Perspective Is Everything

New Year's resolution: Meet Michael J. Fox

2012-01-14T11:58:00.000-08:00

Michael J. Fox is one of my heroes. This is not because he is famous or one of the world’s great actors, although he is very good. It is because he uses the power of his celebrity to do good in the world. He also maintains an extraordinary attitude while living with a chronic disease.

A few years ago he wrote a book: "Always Looking Up: The Adventures of an Incurable Optimist”. What a great book. It is about his life and more importantly about living a happy, productive and full life in spite of living with a chronic illness: Parkinson's disease.

I wrote him a letter and received a form letter in return. Silly me. He probably receives hundreds of letters every day from his fans and my letter was just like all the rest, but not to me! In it I explained that while he may be suffering from "Incurable Optimism", I was living with a condition that is far worse. You see, I have "Chronic Euphoria”. The doctors have told me that I am far too happy for my circumstances and that there is no treatment.

That is what my letter to Michael J. Fox was about. Not your typical fan mail. I would love for him to read it and, if the opportunity is made available, would love to meet him. I am hoping that somehow, someway we can get this letter to him. So I am asking for your help. If you happen to know that "McFly" guy, or knows someone who does, would you please pass my letter on to him? The letter is posted below.

LESSON: If you don't ask, you don't get.

I will let you know what happens….and thank you.

Dear Michael;

While you may be suffering from Incurable Optimism, I live with Chronic Euphoria. The doctors have told me that I am far too happy for my circumstances and there is nothing they can do.

My condition is a challenge for me. I have to wake up happy everyday and am not able to see my world as a glass that is half-full. Instead my glass is always over-flowing. I have more blessings than I can begin to count and have had to hire a new accountant to help me do that.

Next week I am seeing a cardiologist because my heart is always full. Then, I am going to the ophthalmologist because I seem to be having a problem with my perspective.

Clearly, my condition is much worse than yours……..don’t you think?

Thank you for taking the time to read this letter. When I heard about your upcoming show, immediately I wanted to write to you and say “Me too”. Like you, I live with a disease, multiple sclerosis, that has greatly affected my physical abilities. Yet living with a disability has taught me about gratitude, much more than I ever could have learned in a life without incident. Again like you, these past several years have been some of the happiest years of my life.

We are not alone. I have found many people, often severely impaired by their disability, who have discovered the key to waking up happy every day of their life: GRATITUDE. That is my theory and philosophy. I imagine that yours is similar.

I also have a confession to make. You are one of my heroes. I say that because you have and continue to use the power of celebrity to do good in the world. You are a visible representation to the world of what it means to be alive, functioning and living with a disability. My goals is to increase the visibility of disability. You do that today.

I am not in the entertainment business, but have met a number of celebrities over the years. Truthfully, I am not impressed by someone because of their status. But, rather who they are as a person, who they are in the world. You, sir, are someone who impresses me. If the opportunity was made available, I would be thrilled and honored to meet you.

With warmest regards and my very best wishes,

Michael B. Gerber

Cell (213) 804-1249

michaelbgerber@gmail.com

www.mgerber.blogspot.com – “Perspective Is Everything”

Participate. Make a difference. Live as life that matters.

Lasagna in your trunk.

2011-12-20T10:10:00.000-08:00

December 12th was the 8 year anniversary of my mother's passing away.

Regardless of one's religious or spiritual views, one thing that we can all agree on is that people live on in the hearts and minds of those that knew and loved them. For some, that is a lot of people. It certainly was in my mother's case. She touched the lives of hundreds, maybe thousands of people during her short time with us. She cared more than most. She went out of her way more than most. She made a difference to those that she knew and loved and to strangers too.

Strangers? I can remember that when I was a teenager, she saw a homeless man and for some reason he really pulled her heartstrings. She ran home and got blankets, sweaters, snacks and went right back to deliver them to the homeless man. She needed to do something for him.

She had a huge heart that knew no boundaries. Some would say that she cared too much. I would never say that. What I would say is that she was a little crazy…..maybe more than a little. For so many years it seemed as though she never left her house without a cooked turkey or a sheet of lasagna in a cooler in her trunk. After all, you never know when you might meet someone who needs a turkey or lasagna! When my cousin Jon married Marcella it seemed as though it was months before they made their own dinner. Why is that? Because early in the morning my mother would drop off a complete meal for the two of them. If my mother wanted you to have something, she figured out a way to get it to you, whether you wanted it or not. She was a master of covert operations.

While it may sound like she was more than a little annoying, she wasn't and nobody minded her eccentricities because it all came from a place of love. It all came from her heart. She spent her life taking care of those that she loved most, often neglecting her own needs and health. That is part of the reason why when diagnosed with cancer it was already at stage IV. Our lesson learned: you can't take care of others if you don't take care of yourself.

My mother taught us many things. She taught us how to share and to care more and how that can make a difference. She taught us how to give without expecting anything in return. She taught us that when we do things for others, and it comes from our heart, there is no limit of how much we can give.

December 12 may be the anniversary of the day she died. It is certainly a day to remember her. In my case, so was 2 days ago And 4 days ago and 11 days ago. I can honestly say that I think about her every day and that I am not alone. She was extraordinarily close with my wife and my children, my brother and his family, cousins, neighbors, her accountant, insurance agent, colleagues and more. The day that she died may seem like an unusual reason for remembering her. But I see it as just one more reason to remember her. After all, I do it every day.

You may be gone, Mom. But you are still a part of our lives and that is how we keep you living forever.

Participate. Make a difference. Live a life that matters.

Old Stories

2011-12-07T22:59:00.000-08:00

Age is different than it used to be. When I was a kid and my grandfather was 65 years old, he was a little old man. Back then many companies had mandatory retirement at age 65. Today people in their 60’s are an active, vital part of the workforce. It was rare that you met someone who was in their 80's and today it is a common occurrence. More and more I meet people in their 90's and I love it. Especially when these "mature” members of our community are still active and vital and ALERT!

Over the years I have gathered a few stories about these “Super Seniors”. This blog is written to share a few of these stories with you.

Meet Uncle Sam and Uncle Larry

Uncle Sam and Uncle Larry were identical twins, always have been and as far as I know, always will be. Sam lived to be 94 years old. When he passed the doctor said that Harry will probably pass within 30 days and he did. This is not uncommon for identical twins. It is also great that they both lived so long.

The story about Uncle Sam

Uncle Sam was a happy man. Most days were started with a couple of Bloody Mary's followed by a visit to the putting green right outside his door. He was happy for several reasons. One is that his hearing was not so good. I often say that he was happy because he hadn't heard anything that anybody said for 20 years. (Maybe we could learn from that!) Everyone knew that he had a hearing aid because we could all hear the ringing noise that it made. That is, everyone could hear it, but Uncle Sam.

After my great, wonderful and beautiful Aunt Elaine, Sam's wife of many years, passed away he got a much younger girlfriend who was only in her 70's.

The story is that one morning Sam's grandson's wife called to check on him and the conversation went like this.

" Grandpa Sam, it's Jenny"

" Who Is it?"

" it's Jenny. Steve's wife, Jenny.”

" I can’t hear you and don't know who this is, but I can't talk right now. I have just taken a Viagra and my girlfriends coming over." CLICK

There goes a happy 94-year-old man.

The story about Uncle Larry

One day I was out with my family and we ran into Uncle Larry at a deli close to where he lived. We had just a short conversation and he said one of the greatest things I have ever heard.

"Uncle Larry, how are you feeling?”

"The closer I get to 100, the worse I feel."

If that is not the good news and the bad news all rolled into one, then I don't know what is.

My friend's aunt

My best friend's aunt passed away recently at the age of 91. Her mother had passed 14 years earlier at the age of 100.

The story is that when the aunt was only 77 years old and her mother was 100 years old, she was visiting and talking to her mother and at one point her mother interrupted and said this:

"What are you complaining about? You have got your whole life ahead of you!”

That is something that most 77-year-olds don't hear from their mothers.

The Old Testament and my 93 year old grandmother.

The Old Testament tells us that we are to live to be 120 years old. It is common among Jewish people that on birthdays our birthday wish is "you should live to be 120".

My grandmother lived to be 93 years old and her mind was sharp and quick up to the very end…. except for one thing. She could not remember the punchline to this one story……

Molly Picon, a well-known actress within the Yiddish theater (she also played Yente, the Matchmaker in Fiddler On The Roof) would always greet people the same way on their birthday by saying “you should live to be 121.”

Someone asked “Molly, most people say that you should live to be 120. Why do you say 121?”

She replied saying “So you shouldn't die suddenly.”

May we all lead long and healthy lives. May we all live to be 121!

Participate. Make a difference. Live a life that matters.

30,000 Hits and No Bruises!

2011-12-02T19:01:00.000-08:00

Today is the day. Today my hit counter says that my blog has been visited 30,000 times. Actually, the last time that I looked it was 30,154. When I started this, I never dreamed that so many people would read and comment about it as well. My views, my thoughts, my opinions all seem to have resonated or touched many people who read my blog . Wow!

It is quite a pat on the back, or at least a confirmation that my views are valid. It tells me that what I have to say means something and not just to me but to you as well and that is why I write. I have always felt as though I have been blessed with a good attitude and perspective about life. Your visits to my blog tell me that I am right and encourage me to keep going. I have not always been consistent in my writing. Earlier this year I went almost 3 months without any new entries. Now I am back on track, motivated by your visits, support and comments.

I know that there are other blogs out there that get 30,000 visits a month, maybe a week or more. That's not me. My blog is not a business. It is an outlet for me when I have something to say. Truthfully I have a lot to say and just don't always make the time or discipline to sit down and write it. That may be a good thing for all of us.

I do have a new favorite blog and it is doing quite well and rightfully so. It is called "Phoebes Stupid Cancer" and is the daily news about my friend's daughter's journey with cancer. It details her treatment and incredible perspective and spirit. It also tells us about the amazing people she is surrounded by and what a difference they are making to her. She has been writing for 30 days now and has already been viewed more than 4,000 times. I feel privileged to be included in her journey and humbled by the attention that she is getting and deserves.

It is the year's end and the beginning of the gratitude season. It is time to take stock of the many blessings and all the good fortune that we have had during this past year. It is time to make plans for the new year.

My goal, my resolution is to give you all many good reasons to hit me, or at least visit my blog.

Participate. Make a difference. Live alive that matters.

What are you doing on Thanksgiving?

2011-11-23T18:03:00.000-08:00

Thanksgiving is my favorite holiday. I suppose that the food has a lot to do with it. I also love seeing so many of my family and friends that I could never see often enough. We also do a lot of reminiscing on Thanksgiving, or at least I do and have every intention of doing the same thing at this year's Thanksgiving.

A day to give thanks. Really? Really? Just one day? To me, giving thanks is something to be done daily, if not several times a day. My good friend, let's call him Jim, has been in a program for many years. While in the program he had a sponsor and they spoke to each other almost daily. Every conversation started the same way. " What are you grateful for today, Jim?" WOW! That is powerful stuff. Imagine if we all took the time to think about what we are grateful for, or thankful for each and every day. Do you think it would make a difference in our world? I do.

At the risk of being redundant and repeating myself and being redundant, as I have said many times before, gratitude is the key to happiness. Gratitude is the same thing as being thankful. Being thankful is what we are called to do today. This has nothing to do with religion or faith. It has entirely to do with how we choose to live our lives and see the world.

I recently saw a video of a man speaking about "The Happiness Advantage". In it the speaker discusses how so many people believe that they will be happy " when…". His argument, and it is a good one too, is that people who are happy are more likely to be successful than those who postpone their happiness until something happens. (The video is long and he does not start speaking until 33 min. into it. I promise you it is worth waiting for.) I say why wait? If gratitude leads to happiness, then Thanksgiving seems to be as good of a time as any to start being thankful.

I am asking everyone to do one thing today. After the greetings and the hugs, maybe even before dinner and drinking, take a minute. Think about what and who you are thankful for. If you are gathered around the table, tell everyone what you are thankful for and ask them to do the same. Give this Thanksgiving its full meaning and purpose. Be thankful, and then be happy that you have so much to be thankful for.

For me and my family Thanksgiving is a very special holiday that I have written about in the past. For one thing this holiday is definitely a big part of "My mother's legacy"and I suppose that has a lot to do with why "Today I feel thankful."

Happy Thanksgiving everyone. Enjoy the holiday……. and all of your leftovers.

Participate. Make a difference. Live a life that matters.

Our circumstances have nothing to do with our happiness

2011-11-15T15:38:00.000-08:00

I wrote this more than three years ago and came across it again recently. In today's world, it seemed appropriate to publish it again. I hope you think so too.

Sick or healthy. Rich or poor. Thin or fat. Tall or short. Curly haired or bald. None of it matters when it comes to waking up happy everyday. What does matter is gratitude and perspective.

What makes a man rich? It is not money. There are plenty of poor people – “economically challenged” – that feel wealthy in ways that are beyond their wildest dreams. They are ‘loaded’ with family and friends, rich in experiences, and participate in life like tycoons. They are showered in immeasurable riches of making a difference to someone and to the world in which they live. These are the people whose vocabulary does NOT include phrases like “I will be happy when…”, or I would e happy if…”

These people know that there are two keys to happiness. Those keys are gratitude and perspective and they go hand in hand.

Gratitude comes from the recognition of just how much you already possess. Gratitude is the opposite of taking things for granted. The challenge for most people is that they don’t know what to be grateful for or where gratitude begins. There are hundreds of items on my list. Below are some of my favorites.

1. Eyes to see and read
2. Ears to hear and listen
3. Arms to hold. Hands to touch
4. Mind to think and understand
5. Heart to feel and care
6. Roof overhead & bed to sleep in
7. Food to eat and tongue to taste
8. Friends to care for & care for me
9. Family to love & spend time with
10. All of my good health. (Other than my MS, I have a lot of good health that I don't take for granted.)

These are all items that you can’t buy and that cannot be taken away from you. Even if I lost one of these, say sight or hearing, there is still much to be grateful for.

Recognizing the value of these assets is a matter of perspective. What’s your perspective? Where does your gratitude begin? Just how rich are you? It is my hope that if you are reading this, you are already a very wealthy person.

Participate. Make a difference. Live a life that matters.

Jim Morrison taught me how to sing.

2011-10-30T16:43:00.000-07:00

Jim Morrison, the artist, the poet, and legendary lead singer of The Doors taught me how to sing. I know this is a crazy notion. He died in 1971 and I did not learn how to sing until 1973. But, it's true.

I grew up in Whittier, California until I was 14 years old. Then we moved to Huntington Beach and as a sophomore in high school, I was the "new kid", a less than enviable position to hold. I missed my old friends and old surroundings. That longing made it harder to make new friends. Without friends, I had a lot of time to myself and developed new habits, one of which was to come home, put on the headphones, turn on the stereo, and sing my heart out. In particular I loved to listen to the "Doors Live" album and would sing along, with my friend Jim, for hours at a time. The vocal range, the pitch, and tone all seemed perfect for me to sing along to and that is how I learned to sing. Practice. Practice. Practice.

You're probably asking, didn't you know how to sing before? Sure, anyone can sing, but not everyone can sing well, on pitch, on key, and with no flats or sharps. My older brother seemed to have great musical skills. He could sing and play the guitar. Wow! At one holiday gathering we got up to sing together and I was nicely asked "why don't you let your brothers sing this one." I got the message. I did not have his natural singing ability. In fact I was just no good at it... until I met Jim.

Once I learned how to sing, my world changed. I got involved with the school choir, starred in the school musicals and had found a new way to meet people and make friends. I also learned much more.

I learned, and wholeheartedly believe, that everyone can sing. People who say "I can't sing" usually don't. How are you going to learn anything if you don't do it? Perhaps you don't sing well, have perfect pitch or a voice like Madonna or Jim Morrison, but you never will ifyou never do it. That was an important lesson and has stayed with me

ever since.

Years later, as my kids approached their teenage years, both felt as I

did: that they could not sing. So I pressured, harassed, encouraged

and sang along with them and do you know what happened? They learned

how to sing, got involved with choir and were in the school musicals.

Our son, who had less confidence in his singing then his sister,

became so confident that when he went to college he started an a

cappella group. Both of our kids learned this lesson too.

Singing is also good for the soul. It is a form of expressing almost

every emotion. Joy, sorrow, excitement, loss, love and so much more.

"That is exactly how I feel" Is how we respond when someone has

already put the words and music together. Singing allows us to

verbalize, vocalize those feelings. Expressing those feelings can only

be good for the soul.

If more people sang, the world would be a happier place. We don't have

to join hands and sing Kumbaya (not that this is a bad idea) and we

don't have to sing today's Top 40. What we can do is sing, sing more, sing out loud and sing because it is good for you.

I like the sound of that. Don't you?

Participate. Make a difference. Live a life that matters.

Lessons from a dog.

2011-10-15T21:00:00.000-07:00

Our dog is extraordinary and wonderful. (Whose isn't?) She seems to be happy all the time. Always ready to play. Always ready for affection. Always ready to go outside or for a ride in the car or for a walk to the corner. I know that if she could talk she would never tell you that it was gloomy outside.

This thought occurred to me this morning when asking about the weather and was told "it is a little gloomy outside." Not something our dog would ever say. “Outside” is always glorious, a wonderful opportunity for adventure, intrigue and excitement.

Why is that?

Our dog greets every day with enthusiasm and excitement. A new day is a new opportunity to meet new people, make new friends, go new places, play new games and most of all to get her belly rubbed. Even when engaged in seemingly monotonous activities like " fetch", she exudes a happiness rarely seen in people. Maybe there is something to be learned here.

She seems to greet every moment of every day as an opportunity. Wow! What a great perspective. Do I do that? If not, then what am I missing out on?

Imagine how different life could be if we saw every moment as an opportunity. There is no question that every moment and every experience is an opportunity to grow, feel, learn and much more. The question is what keeps us from being as excited as a dog in greeting every moment of every day that way? I suppose a simple answer is that we are busy, or other things get in the way. Dogs don't have to pay bills, go to work, or be responsible for pretty much anything. If they were, I wonder if they would greet those activities with the same enthusiasm as they do everything else?

As I think about it, my guess is that our dog probably would greet each day, each task and each responsibility that same way. Maybe it is time for me to re-think how I approach every minute of every day.

Maybe “it's a dog's life” isn't so bad after all.

Participate. Make a difference. Live a life that matters.

Bells Will Be Ringing

2011-09-27T18:01:00.000-07:00

Pride, joy, excitement and anticipation are a few of the feelings we have had since we learned of our son's engagement to his girlfriend Abby. It always seems as though everything in life happens at just the right time and this marriage will be no exception to that rule.

We are very proud of Adam's decision to marry Abby. She is everything we could want in a daughter-in-law. Sweet, loving, kind and she makes him very happy.

Together they make a beautiful couple and seem very good to and for each other. What else could we ask for?

For as long as we can remember Adams's goal in life has been to get married and have a family. He wants to be a husband and a father and I think those are noble aspirations. I am also certain that he will be great at both. (Abby will see to that!)

Abby has every characteristic and trait that our son could want in a partner. She is smart, beautiful, playful and affectionate. A life and a family are also on her list of dreams and desires and we have every bit of confidence that she can and will have both.

What I like most about both of them is their grateful spirit. They are both filled with a deep sense of gratitude and that will bring them much happiness for many years to come

Abby is a small town girl from the Midwest. Adam is a big city boy from LA. They met on the East Coast. It must have been their destiny. B’shert!

Participate. Make a difference. Live a life that matters.

I was abducted by aliens.

2011-09-13T18:20:00.000-07:00

I was abducted by aliens. My dog ate my homework. My grandmother…….. Well, you get the idea.

Many years ago I learned that you either have results or reasons why not. I have a lot of reasons why not, but the fact of the matter is that I have just not been writing. I have started to. I actually have 2 dozen blogs that I have started and not finished. I could blame it on my MS, my family, or any one of 100 other distractions that are more commonly referred to as life. It's funny how life can get in the way of doing other things. Isn't it?

Readers are generally less concerned with the blogs I have started than the ones I have finished. That is pretty much how life is too. As I said earlier you either have" results" or "reasons why not", more commonly referred to as excuses. Let's look at that for a minute.

People who do things never have excuses. Excuses are what people who don't do what they say they are going to do always seem to have. I know this is obvious, but we don't always pay attention to how it relates to ourselves." I tried losing weight but I couldn't." I tried to quit smoking but it was too hard." " I tried to exercise every day but I just don't have the discipline." if this sounds familiar, raise your hand. ( Both of my hands are in the air!)

You can tell when an excuse is coming by the language we use. "Try", "should have" and "almost" are the words used by people who don't get results. People get results say things like " I did it"

What is worse is since we all use excuses, we are always ready to excuse others. We even have phrases like" at least you tried", or " try, and try again". We even say" that's okay. I forgive you" as though that lets someone off the hook for not doing what they said they were going to do. What we do not do is hold people accountable.

Imagine that if we or someone we knew was dieting and not losing weight. What would happen if we asked" what did you do instead?" It might give us or the dieter the opportunity to tell the truth!" I decided to have the cheesecake(or ice cream, or seconds, or cookies. You fill in the blink) instead of diet".

Why haven't I been writing blogs? All I can say is that it had nothing to do with aliens, the dog, my grandmother. I am pretty sure that it had something to do with me.

From Now on I plan on being much more consistent with my writing…….. Unless, of course, something really fantastic gets in my way.

Participate. Make a difference. Live a life that matters.

How to be beautiful

2011-05-21T17:25:00.000-07:00

One of my favorite greeting cards reads "For your birthday I was going to get you a day of beauty for $175. But all I could afford was a day of relatively attractive for $35."

Just a couple of weeks ago I went to the movies with my wife and my travel companion, my wheel chair. While there a woman approached me and much to my surprise said "You're beautiful. Oh my God, you are beautiful" and then began to awkwardly apologize. She went on to explain that she wasn't used to seeing attractive people in a wheelchair, but I think she was saying much more than that.

I am not beautiful. There are no beauty pageants in my future. No one has ever come up to me and said that before. What she was really confessing was that her image of a person in a wheelchair was of someone 'unattractive'. That a wheelchair somehow suggested a deformity or disfigurement and thankfully, I don't have either of those. What I do have, and many of us with disabilities have, is to have combat those expectations of being unattractive, deformed, mentally incompetent (STUPID), hard of hearing or somehow less than ``the more able bodied occupants of our planet'.

So let me tell you what I do. I smile at people and say hello. I start conversations with strangers. I make it a point to be seen as the happy guy in the wheelchair….whether at the movies, the grocery store, the doctors office or the airport. Some of the places we go to regularly know me for that and if I have somehow changed their expectations of a guy in a wheelchair, than the world is a nicer place and we are all better off.

Do smiling, saying hello and being friendly make someone more attractive? I think so and apparently the woman at the movie theater thought so too.

Whether in a wheelchair or not, become known as the happy guy. Change people's expectations of how people are and how you are. Smile, say hello, ask a stranger "how are you today" and see what happens.

My guess is that before too long, someone will tell that you are beautiful

Participate. Make a difference. Live a life that matters.

Ten things to learn from Japan

2011-05-14T12:52:00.000-07:00

I received this e-mail the other day and thought it was worth sharing. I hope you think so too.

1. *THE CALM*

Not a single visual of chest-beating or wild grief. Sorrow itself has
been elevated.

2. *THE DIGNITY*

Disciplined queues for water and groceries. Not a rough word or a crude
gesture. Their patience is admirable and praiseworthy.

3. *THE ABILITY*

The incredible architects, for instance. Buildings swayed but didn't fall.

4. *THE GRACE (Selflessness) *

People bought only what they needed for the present, so everybody could
get something.

5. *THE ORDER*

No looting in shops. No honking and no overtaking on the roads. Just
understanding.

6. *THE SACRIFICE*

Fifty workers stayed back to pump sea water in the N-reactors. How will
they ever be repaid?

7. *THE TENDERNESS*

Restaurants cut prices. An unguarded ATM is left alone. The strong cared
for the weak.

8. *THE TRAINING*

The old and the children, everyone knew exactly what to do. And they did
just that.

9. *THE MEDIA*

They showed magnificent restraint in the bulletins. No silly reporters.
Only calm reportage. Most of all - NO POLITICIANS TRYING TO GET CHEAP
MILEAGE.

10. *THE CONSCIENCE*

When the power went off in a store, people put things back on the
shelves and left quietly.

With their country in the midst of a colossal disaster - The world can learn much from the citizens of Japan.

Participate. Make a difference. Live a life that matters.

The power of the internet to do good. More about Chelsea's Hope

2011-04-24T19:02:00.003-07:00

I wrote a blog about 18 months ago called "What if it was your child?' It is about my niece, Chelsea who has an extremely rare and always fatal condition called Lafora Disease.

It is so rare that there are only a couple hundred known cases worldwide. There is also no treatment and no cure. Here is what we know about Lafora today:

Kids are typically diagnosed in their early teens

The mental and physical deterioration occur rapidly

No one with Lafora has lived to be 30 years old

Life expectancy is usually about ten years from the date of diagnosis. Chelsea was diagnosed almost six years ago.

What does all this have to do with the internet? Plenty.

Increased awareness means increased funding for research and treatment. Chelsea, or rather Chelsea's Hope, a non-profit organization founded by her incredible parents is now in the final round of a contest sponsored by Toyota.

If we win, a car will be decorated and dedicated to Chelsea's Hope. To win we need votes which you can do every day until May 1st. We need your vote. We need your friends to vote. We need you to go onto Facebook or MySpace or Linked In or whatever social network you belong to and help us generate as many votes as you can. That is the power of the internet to do good in the world. But if we do nothing, nothing will happen.

Voting is simple. Just CLICK HERE.

To learn more about Chelsea's Hope, CLICK HERE.

To make a difference I the world, TELL A FRIEND.

That is the power of he internet to do good in the world. I hope you will help us to do that.

Participate. Make a difference. Live a life that matters.

What do bingo, drag queens and MS have in common?

2011-03-07T00:03:00.000-08:00

Plenty…..especially if your bingo is hosted by a well known drag queen named Belle Aire and all the profits go the National MS Society.

Tonight was our night and we (The JiggyWiggits) hosted our first fundraiser of the year and it was a hit. We netted just over $3,000, all for a great cause and all for a great organization. It was fun, entertaining (and how!), inexpensive and we gave away dozens of great prizes that were all donated by friends, friends of friends and businesses that we frequent. We kept it simple, low cost and I am sure that we will do it again next year and the next year and the next.

I am telling you this because I am very proud of what we have done. My wife and daughter took the lead on this event and made it all happen. It was definitely something different. More importantly it was something.

The key to fundraising is to do something. Girl Scouts sell cookies. Students sell chocolate bars. Churches have yard sales. Even neighborhood kids set up lemonade stands. If you want to raise money you have to do something.

The National MS Society gives people opportunities throughout the year to participate, raise money and make a difference. Then there are scores of people who do their own events be it concerts, tennis tournaments or bake sales.

The question for us is always what else can we do? Your question is what can you do, or better yet what will you do?

I recently read about a man who since 1999 has raised over one million dollars for the Society (Momentum Magazine - Winter 2010: “The Gillespie Whirlwind”). He has MS Walk teams in eight states, does a big wine tasting event and has enrolled the help of many others to achieve these results. I know that I can do more and he is my inspiration.

Bake sale? Carwash? Or just drag queen bingo? That is up to me. What will you do? I would love to know.

Participate. Make a difference. Live a life that matters.

My Year With MS

2011-03-01T14:18:00.000-08:00

We live an extraordinary life and 2010 was certainly no exception. We went to

Australia

for two weeks and it was incredible. One of the most beautiful and friendliest places we have ever been. Then we went on a big family cruise to the Mexican Riviera. Swimming with dolphins is amazing and something everyone should do….and that’s just the beginning.

Living with MS and traveling, which I love to do, does take its toll on me. The trip ‘down under’ included two fifteen hour plane rides. While there I spent all day every day in the wheelchair. My bad. When I got home I had less ability and confidence when using the walker. Then a few weeks later we went on our cruise to Mexico. Again no walking, all wheelchair. Guess what happened next? I got a blood clot which landed me in the hospital for three days on anticoagulants. OY! Long plane rides put everyone at risk for blood clots, especially people like me with limited mobility to begin with.

Then in September I started experiencing weakness which came on very quickly. In fact, because of the rapid on-set, we were certain that it must have been an infection and rushed to see a doctor. (Have you ever tried to see a doctor at Cedars-Sinai on a Jewish holiday? Good luck!) Exam, blood, urine, the works and there it was; an infection. Thank G-d. Now we knew what was causing all of this and could treat it. Right? Not quite.

The most common form of MS is Relapsing-Remitting MS and is characterized by exacerbations, or flare ups. Periods of greater weakness and often other symptoms that last for shorter periods, usually weeks. They are followed by a recovery, often full and all too often leaving the MS’er with less ability or more symptoms than they had before the flare up. I don’t have that.

I have what is known as Secondary Progressive MS. This form of MS is characterized by a slow, steady progression of the disease without flare-ups. Or as my doctor put it “You don’t get exacerbations….unless you do.” That was me. Years without an exacerbation until 2010 and then BAM! I got one.

We will never know which came first, the infection or the exacerbation. My ability to move, stand and walk was already pretty limited. Once the exacerbation hit, the standing and walking were gone. I also could not transfer from one chair to another on my own and needed a caregiver to help me to the wheelchair, toilet, shower, back to the chair. You get the picture.

This went on for a few of months with no improvement. Then in January of this year my right calf started to swell and harden. Another blood clot? I called the doctor and he said to go the emergency room. I did. No blood clot. Hurray. They did, however, admit me and gave me three days of IVIG, an infusion treatment for acute exacerbations. While there I was evaluated by the physical rehab’ team and accepted into the program, extending my stay by another two weeks and receiving 3.5 to four hours of therapy everyday……and do you know what happened? I got stronger.

Evidently five months of not moving can really contribute to muscle loss. Though I did make a lot of progress, I am still not walking with a walker and barely (and rarely) able to stand. But it’s a start and I’ll take that.

There is also more to MS than just disease activity…...at least there is for me.

I run a monthly support group in our area for the National MS Society that continues to grow in size and value. Also, Gail and I have served three times as co-facilitators at a weekend relationships program for people with MS that the Society puts on and we have loved doing this. We hope to do it again and again. Our 2010 Walk MS Team, "The JiggyWiggits", was again one of the top fundraisers in the country bringing our four year total dollars raised to just over $130,000. (Our next Walk is April 3rd and everyone is welcome to join us. Just click JiggyWiggits.) Finally, although my blogging has slowed down a bit, it still gets a fair amount of traffic and is a very rewarding experience for me.

It must read as though our lives revolve around MS. They really don’t. There is so much more going on than I can fully address in this letter. Gail runs (and I help) her dad’s foundation (www.zachorfoundation.org ), we are starting a new business, we take time with family and friends and we manage to have things to do most every hour of every day. Add to that the fact that my beautiful wife has had some of her own health issues to deal with and we stay very busy.

And then there is MS which is like having a gorilla in the room. It can’t be ignored and when MS wants our attention, it lets us know.

My year with MS was certainly a year of challenges and changes. It was also a year of learning more about MS and about me. This year, 2011, is off to a good start. I feel fortunate, blessed and privileged and much of that is because of the people around me. My wife, my children, my family and friends all show up and all contribute to this amazing journey we call life. They make it possible to do all we do and to make a difference and that makes me very happy.

When I went to the hospital I wrote “I am happy to be here.” Now that I am out and home, I have much more to do. Will I continue to exercise? Will I continue to exercise my influence over this disease? Will I continue to participate and make decisions that result in my happiness regardless of circumstances? That’s up to me. That’s my choice. That’s what I am choosing to do.

Support me in this year's MS Walk. Join our team and contribute to the JiggyWiggits by clicking here. You, and everyone affected by MS, will be glad you did.

Participate. Make a difference. Live a life that matters.

I am happy to be here

2011-01-27T22:46:00.000-08:00

Be where? Paris? Honolulu? No, in the hospital.
In fact, I have never been happier to be in the hospital than I am now. Why am I happy to be in the hospital? Because I am about to begin an estimated two weeks of physical rehabilitation.

Last year was a very challenging year for me physically. My ability to walk with a walker continued to lessen until I no longer could. The same is true with my ability to stand with a walker… and I am not ready to give those abilities up.

My rehab’ program will include several hours of exercise every day and what I will really be exercising is the influence I have over my body and this disease. I may not have control, but I do have influence and it is up to me to exercise it and I will.

Exercising our body, or our influence may be one of the most important things we can do for our health. It is also important to exercise our influence in other areas of our life as well including relationships, finances, careers and much more. We may not always have control but exercising our influence may be the difference between success and failure.

I can let my MS take over, but instead I have chosen rehabilitation as my way of exercising influence over the course of my disease. How do you exercise influences over the events and conditions of your life? I would like to know.

Linsday Lohan and Robert Downey, Jr. , Look out. I will be out of rehab’ soon and have no plans to ever go back again!
Participate. Make a difference. Live a life that matters.

Practically Famous

2011-01-18T14:14:00.000-08:00

A few months ago I was contacted by an organization, Health Central, and asked if I would be interested in doing some videos about MS for them….and so I did. They came to our house, filmed and I never heard from them again….but I did hear from my mother-in-law.

One day she was surfing the internet and there I was, talking about living with MS. I did a little research and found five short videos featuring ‘yours truly’. I decided not to give up my day job, but did want to share the links with all of you. Enjoy.

http://www.5min.com/Video/Attitude-and-Perspective-for-Better-Living-with-MS-500242114

http://www.5min.com/Video/Best-Exercises-for-Living-with-MS-516932385

http://www.5min.com/Video/How-to-Recognize-the-Early-Signs-of-MS-500251885

http://www.5min.com/Video/Adapting-Your-Home-to-Make-Life-Easier-When-You-Have-MS-485893499

http://www.5min.com/Video/Alternative-Treatments-for-Living-Well-with-MS-516932438

Wishing you all an extraordinary new year.

Participate. Make a difference. Live a life that matters.

Labor of Love

2010-12-27T19:20:00.000-08:00

It happened on Christmas Day 28 years ago. It all began on the 22^nd. We thought it would happen on the 23^rd, but it didn’t. Then for sure it would happen on the 24^th, but it didn’t. Finally, after 57 hours of active labor, our beautiful daughter was born. Can anyone beat that?

By active labor I mean contractions at least every ten minutes. Once that was happening, and late that evening of the 22nd, we got our bags and headed to the hospital knowing that at any minute we would become proud parents…..and we waited. After a few hours the hospital sent us away. They suggested we take a walk and come back later and so we did. Our baby wasn‘t ready to come out yet.

We returned the afternoon of the 23rd. This time they checked us in. Contractions were still coming every ten minutes, but now we were dilated to two centimeters. We called the grandparents-to-be and a few friends. Soon the waiting room was filled with our entourage and anticipation………and they waited.

With few exceptions everything after that is a bit of a blur. Late morning of the 24^th, the doctors decided to induce labor and gave our soon-to-be mother Pitocin. Two hours of wild contractions later (and language that would make a sailor blush), still no dilation. “Mom” got some Demerol so she could rest and relax still contracting every ten minutes. They gave me nothing. That was how we spent December 24^th.

Then on the morning of December 25^th, they were preparing us for a Caesarian procedure. Finally. Just get it done….until someone made a suggestion. “Why don’t we try the Pitocin one more time?” and we did.

BAM! Wild contractions and we went from two to ten centimeters in just ten minutes. ”A baby is coming. A baby is coming.”…..or so we thought. The dilation was then followed by two hours of pushing and then “Voila”. A perfect child, our beautiful girl was born and brought into this world. The new mother finally had her healthy, beautiful child in her arms and finally got to rest.

Since then she has done everything a child is supposed to do. She has brought us endless joy, heartache, pride, grief, love and affection. Now that she is 28 years old, we can look at her and see the extraordinary woman she has become. She is beautiful, kind, smart, caring, independent and so much more. Looking at her today, I wouldn’t trade one minute of those 57 hours.

That’s what we were doing on Christmas 1982 and the day before and the day before that. What were you doing?

Participate. Make a difference. Live a life that matters.

Birthday Balderdash

2010-11-05T17:22:00.000-07:00

I have written about birthdays in the past, yet they seem to keep coming. What’s the deal with that? Sure, I am getting older but I was getting older yesterday too and nobody said anything then.

Birthdays are like a law of nature. They are going to happen no matter what we do. We inhale and then we exhale. We continue to wake up each day and we continue to have birthdays. As sure as the calendar changes each day, a birthday is likely to occur.

What’s changed? What is different? Technology. Today I received (and the day is not over) nearly 50 birthday greetings on Facebook, a half dozen e-mails and several birthday cards. I expect more before the day is over. (For some reason I haven’t got anything from Plaxo or Linked-In. Hmmmm???)

What’s good about getting older? AARP membership? (Now you only have to be 50) Restaurant and movie discounts? (I am not old enough yet. But soon.) Medicare? Social Security? More people calling you Sir or Ma’am? (Of course, I can’t hear them anyway)

What blows me away about getting older is how long you can say you have done things for. Graduated high school 35 years ago. Friends for almos t 40 years. Had my real estate license for 32 year. Children who are 26 and 28…….and my favorite, been married for over 30 years.

I’ll tell you what’s good about getting older.

Getting older, for many of us, is an opportunity to be more grateful, more appreciative of all the good things that fill our lives. In particular, relationships, both old and new. It is also wonderful to be thought of by so many people that you know that took the time to send a birthday greeting. Evidently, the world is filled with a lot of kind people.

I like getting older. Firstly, it beats the hell out of the alternative. Secondly, it is a great reminder of all the people that matter to (even if it is just a Facebook greeting) and that matter to me. Third and finally, I usually get some presents.

Birthday balderdash? I don’t think so. I made donations to honor my friends this year, but clearly, I could never give enough.

Happy birthday? You bet it is.

Participate. Make a difference. Live a life that matters.

The Medical Report

2010-09-26T13:24:00.000-07:00

I remember laughing. It was almost 30 years ago and if you called my mother-in-law and asked “How ya doing?” you got the answer, the whole medical report whether you wanted it or not. Well, here it is, almost 30 years later and if you ask me, or my wife, or most of our friends “How ya doing?”, you are likely to get the whole medical report.

What happened? We got older. More importantly, our bodies got older too and with aging bodies comes more ailments, diseases….and medical reports.

The truth is that those we care about and those who care about us want to know how we are. It’s more than a morbid curiousity. But rather an “I made it” –“Did you make it too?” type of curiosity. The fact is that we are getting older and to me, that’s the good news.

For many years I have said “If we are lucky enough to live long enough, we will all have something to deal with.” That’s the good news. It means that we have lived long enough to have something. That’s life and I would rather have it than not have it. Some of us are ‘lucky enough to have our health issues earlier…..like me.
God willing you are in your 50’s, 60’s, 70’s or older and are healthy and strong. What a blessing. But chances are that if you have lived that long, you know someone who has had to face serious health issues and chances are that when you ask “How ya doing?”, you really want to know.

Little did I know that way back when I asked my mother-in-law “How ya doing”, the meaning and significance those three little words would take on not that many years later.

Participate. Make a difference. Live a life that matters.

Eating Children.

2010-09-04T11:03:00.000-07:00

The title of this piece is correct. It is about eating children.

Many, many years ago when my kids were born (now 26 and almost 28 years old), I wrote poems. Some of you may identify with them…..or at least I hope so. For years people have told me to publish them. So here are a few of them.

WARNING: Some are about eating children.

My Daddy’s Trying To Eat Me!

My Daddy’s Trying To Eat Me!

He’s nibbling at my feet

He’s chewing on my fingers

And telling me I’m so sweet

My Daddy’s Trying To Eat Me!

He’s sucking on my cheek

I am getting smaller everyday

I think I’ll be gone next week

My Daddy’s Trying To Eat Me!

I can tell from his kiss on my head

Because I am sure that what he’s doing

Is taking little bites instead

My Daddy’s Trying To Eat Me!

He calls me his Little Lamb

That’s a favorite food of his

And he thinks that’s what I am

My Daddy’s Trying To Eat Me!

He calls me his Sugar and Spice

I guess that’s the price a little girl pays

When she tastes so nice!

By Michael Gerber

There’s A Baby Inside That Lady’s Tummy!

There’s A Baby Inside That Lady’s Tummy

And she won’t let him out for nine months

She won’t let him have toys,

Or make any noise

Or even watch TV, not once

There’s A Baby Inside That Lady’s Tummy!

And we’re told that she eats everything

From the way she is showing

And her tummy is growing

I’ll bet that she’s bursting a seam

There’s A Baby Inside That Lady’s Tummy!

And you better be fast on your feet

Because inside her belly

It stretches like jelly
And you’ll be the next one she eats!

By Michael Gerber

If Kids Were Cookies

If kids were cookies

I’d the fresh every single day

I’d like to know how many kids

That I could put away

Yes, I’d eat these kids with ketchup

And even day old stew

Yes, I’d eat them by the dozen

If kids were cookies too

And when all the cookies are eaten

I kkn1ow just what I’ll do

I’ll make the rest into Kiddy Cake

And Kiddy Jello Too

By Michael B. Gerber

I hope you enjoy these. Feel free to pass them on to new or expecting parents. I always do and they seem to enjoy them.

You know you have a great mom when........

2010-08-20T11:10:00.000-07:00

Moms don’t get all the attention and credit they deserve…..or at least the great ones don’t. I know this because I had a great mom.

Great Moms are committed and preoccupied with the well being of their family, especially their children. They are selfless, generous and always doing for others. Often they will cook, clean and make costumes for the First Grade Circus. Sometimes they are just plain nuts (like my mother who used to do a trial run of her Thanksgiving dinner the weekend before. Who wants to do that twice???). They are there to comfort and protect us. It is their role, the reason they are here.

If a child is sick, they will move mountains or dig ditches to find a treatment or cure. The word “No” is not in the vocabulary of a great mom when it comes to caring for their children.

Great Moms reach extends beyond their own family. They are often ‘maternal’ to and towards a lot of people, regardless of their age. They counsel, advise and care for everyone close to them and seem to have an endless supply of band-aids, hugs and kisses for anyone who needs one.

Usually girls learn to be women from their mom and in today’s world, boys often learn how to be men from them, and I don’t think that is a bad thing. They are teachers, playmates, nurses and disciplinarians. They are God’s gift to us all. Perhaps they are his angels on earth.

I know all this because I had a great mom. If she were alive, today would have been her 75th birthday. She died of cancer almost seven years ago and although she is no longer with us physically, she certainly left her mark on our family and she is often spoken of. Her presence is known and felt in our home. I think of her everyday.

My mom and I were close and spoke often. We saw her regularly and she was a big part of our family and lives. Now that she is gone, I don’t think that I gave her all the credit and attention she deserved. Maybe no Great Mom gets all they deserve.

Happy birthday, Mom. You will live forever in our hearts.

Participate. Make a difference. Live a life that matters.

Marital Advice From An Expert.....Me!

2010-08-04T13:59:00.000-07:00

I am not a psychologist or therapist and have no formal training on how to counsel others. What I do have is a very happy marriage of 30 years and that is what qualifies me to give advice…….experience.

Ask couples who have been married many years what the secret is and you will get a variety of answers. “Respect”. “Friendship”. “Never go to bed angry”. All good answers, all valid. But I believe that my answer to the question trumps all of those answers.

My advise is different and if you follow it, all those other pieces will fall into place. My advise is to be grateful.

Remember why you fell in love and all the things about your partner that you are grateful for and tell them. By telling them you remind them, and yourself, of what it is you love about them. Gratitude is the key to happiness and to staying in love. Unexpressed gratitude is useless. It must be expressed. Otherwise it is like buying someone a present and never giving it to them. Useless.

The opposite of gratitude is taking things for granted. Whenever things go awry in a relationship, one of the parties always feels taken for granted. Don’t let that happen.

Make expressing gratitude a habit. It has taken some of us a long to learn this, but I can tell you from personal experience that it works. Gail and I just celebrated our 30th anniversary, and I can honestly say that I am more in love with her today, then I was on the day we married and I am more grateful too. Rarely does a day go by without me telling her that I love her and why. And guess what? She does the same with me.

The last several years, and in particular, living with a disability, has taught me more about gratitude than I ever could have learned in a life without incident. But don’t wait for a life changing event to learn these lessons. Remind yourself, and your partner, today why you fell in love and do it all over again.

You, and your partner, will be glad you did.

Happy anniversary, Gail. I love you more today than yesterday.

Participate. Make a difference. Live a life that matters.

It takes a village…..or at least it’s better that way.

2010-07-27T15:56:00.000-07:00

There are always at least two ways to do everything. Right or wrong. Good or bad. Alone or with others.

I like to do things with others. In fact, I am certain that my life is better because of all the people in it. I can say with certainty that as a person with a disability, my life is also easier because of all the people in it.

If I need help, someone is there to help. If I need someone to talk to, someone is there to listen. If I need a laugh, someone is there to play with or share a joke. When I am there to listen to someone else, than I know that I am of value to another person.

Having people in your life and being involved with others is a great reminder that you are alive and worthwhile. It can also help one forget about their troubles for awhile and that is always a good thing.

I recently read an article about isolation (InsideMS /Healthy Living / Isolation) that was written by my friend Alison Dale. It turns out that isolation is a pretty big problem in our MS community and is often a problem for anyone living with a chronic condition. I am guessing that it is a problem for many people without a chronic condition as well. (Isolation can lead to depression and that can be a serious problem. If you or someone you know suffers from depression, please get help.)

There are many reasons why and how a person becomes isolated. Some may have to do with physical limitations or disability. Some with fatigue and sometimes it is just the belief that no one understands or cares. Whatever the reason, isolation means being alone and being alone is no way too spend all of your time.

If you are alone and don’t want to be, do something about it. Call a friend and invite them over. Go to church or temple and find ways to get involved there. Join a club or service organization. Volunteer. There are hundreds of ways to get involved with others and millions of nice, caring people in the world. Finding them is not difficult. It just requires a little initiative.

If you are not a likeable person, become one. Learn to ask questions of and about others and listen to their answers. Practice gratitude. Say hello to strangers and learn to smile. You will get back what you put out and will soon find that you have created your own community.

If you are not alone, go find someone who is. Make a difference in someone else’s life. You will both be glad that you did.

Life is better when you have people to share it with. For some people that may mean marriage or family. For others, it may mean friends or belonging to a group.

Having a full, rich, meaningful life requires people to be in it. In my case, it takes (or at least I have) a village.

Participate. Make a difference. Live a life that matters.

Rejection has never felt so good.

2010-06-30T11:10:00.000-07:00

Is it the good news or the bad news? This past week and for the third time, I was turned down as a participant in a clinical trial. Getting into one of these trials as a volunteer/participant is tougher than I thought it would be. This time, however, being turned down was the good news.

This particular study was to see if exercise could improve the cognitive function of those of us living with MS. You needed to have a minimal level of physical ability and some evidence of loss of cognitive function. The doctor gave me a physical exam and then the Clinical Director administered a test of 60 questions to measure thinking skills and memory processing speed. The good news is that I answered 59 of the 60 questions correctly. A high score.

The bad news was that because of my score, I was not an eligible candidate for the study. Geez……..I may never get into one of these clinical trials.

More than half of the people living with MS will experience some level of cognitive dysfunction. Another fact is that over time, the great majority of us will experience some physical disability. Given a choice (which I am not), I would choose to have the physical disability over the cognitive disability every time. Luckily for me, that is how the course of my MS seems to be going.

Acceptance seems to be one of the best ways to live with a chronic condition….really, to live life under any conditions. By acceptance I don’t mean complacency or resignation. I mean accepting what is true, what cannot be changed and making the most out of whatever abilities I do have.

According to the test, my cognitive function is great. Will it always be that way? I can only hope so and can take steps to maintain the status quo, both mentally and physically. But if it changes, I know exactly what will do. Make the most out of whatever abilities I do have.

Will I ever get into one of these studies? I can only hope not.

Participate. Make a difference. Live a life that matters.

Doing the best we can Part Four: "Never Underestimate The Power Of A Smile"

2010-06-23T09:16:00.000-07:00

I found what I hope is the perfect ending to this series on doing the best you can. It is a very short video taken from ABC News of a graduation speech given by a very special young man. The video takes less than three minutes to watch and shows us all the power of what can be done when we do the best we can.

Student's Inspirational Graduation Speech

Participate. Make a difference. Live a life that matters.

Doing the best we can. Part three: Life and love.

2010-06-07T20:01:00.000-07:00

Sometimes doing our best has nothing to do with physical accomplishments, careers or travels. It has to do with how we approach life, living and love. All too often, when faced with a chronic illness, a person dismisses the possibility of love and romance. After all, who would want to sign up for that in a relationship?

That said, meet Dan and Jennifer. They met several years ago, fell in love, got married and have been happy ever since. A typical love story, except for one thing. They both have multiple sclerosis.

Dan has relapsing-remitting MS and it is not as severe as Jennifer’s (or mine!). He works, he walks and he jogs about three times a week. He also cares for Jennifer.

Jennifer has secondary-progressive MS. She cannot work or walk. But she is a caregiver to Dan, helping in every way that she can.

Dan and Jennifer have something else too. They have a tremendous spirit and attitude that propels them to make a difference in the world. As a result, they are an example to everyone who knows or knows of them.

Having MS does not stop them from participating. In fact, just the opposite is true. They lead and inspire others. They fundraise, advocate and speak. They receive rewards and recognition and are featured in articles and videos. They have even figured out how to dance together. They are alive, in love and living with a chronic illness.

They are not only doing the best they can, they are doing great.

I have never met Dan and Jennifer, but have been a fan for some time now. I am always touched and inspired by the things they do and their extraordinary love for each other. Read Dan and Jennifer's blog and learn more about them. Learn about two people doing their best in life and love and be inspired to do the best you can.

Dan and Jennifer have a prayer that say every night and part of it is as follows:

“Gracious God, help Jennifer and me to accept your will in our illness. As your children we believe that you cause all things to work together for our good, both of body and of spirit. But sometimes in the midst of illness and pain we forget or doubt. Forgive our weak faith. When we become impatient, encourage us by your word. Despite our worries and suffering, help us by our lives to reflect the radiance and confidence of those certain of your promises of help. Restore us to sound health if it be your will, and enable us with new vigor and enthusiasm to serve you zealously for many years to come. O Lord, have mercy. Hear our prayer. Amen.”

I think their prayers are being answered.

Participate. Make a difference. Live a life that matters.

Doing the best we can. Part Two. When is failure a success?

2010-05-17T00:24:00.000-07:00

When is failure a success? Every time we do the best that we can do.

Recently I was introduced to Wendy Booker. Have you heard of her? She is an extraordinary person who does amazing things. She used to be an interior designer. now she runs marathons and much more. She also lives with Multiple Sclerosis.

Wendy is a 55 year old single mom and was diagnosed with MS twelve years ago. After getting her diagnosis, she learned of a team of mountain climbers, all with MS, who were training to climb Mount McKinley (Denali). The team attempted their first climb in 2002 and due to weather, did not make it to the top. But that didn’t stop Wendy.

In 2004 she went back and made it to the top. She then decided to be the first person with MS to climb the highest mountain on every continent: Kilimanjaro, Denali, Mt. Elbrus, Mt. Aconcagua, Mt. Vinson Massif, Mt. Kosciuszko and Mount Everest, the Seven Summits. So far she has completed six of those climbs. How amazing is that?

After months of preparation, in April Wendy set out to climb Mount Everest, the world’s tallest mountain and a climb of more than 29,000 feet.

A climb like this requires much more than physical strength and determination. Many of the obstacles are unknown and unpredictable until the climber gets there and discovers how their body responds. At over 17,000 feet, Wendy’s body could no longer tolerate the lack of oxygen and extreme temperature changes, all compounded and magnified by her MS. She did not make it to the top. She did not realize her goal.

Does not making it to the top mean that Wendy failed? I don’t think so. In fact, I consider her a huge success. She did more than she ever did before. She has done and accomplished what few able-bodied people can do. She did what no other known person with MS has ever done. She has set the bar for herself and others who may want to accomplish a similar goal. She did the best that she could do. Fail? I don’t thinks so.

Wendy has set an example for all of us. We all have ‘mountains to climb’. The questions are will we and will we do the best we can?

I encourage you to learn more about Wendy by visiting her blog (http://wendybooker.wordpress.com ) and website (http://www.wendybooker.net ). Then go climb a mountain and do the best you can.

Participate. Make a difference. Live a life that matters.

Do the best we can. Who could ask for more than that?

2010-05-02T20:03:00.000-07:00

I spent 26 years in management and came from the school that said “you either have results or excuses why not”. It was an approach to managing salespeople in particular that did not allow for excuses, reasons and stories about why not. We wanted results and this approach is both valid and effective in that arena and in many areas of my life today. Yet today, my view seems to have changed….softened. There are some things that we just cannot do or control.

I bring this up because I recently received an e-mail from one of my new ‘internet friends’. I had asked him to participate in something and he responded telling me why he could not attend, then saying “I can see you shaking your head and thinking; excuses, excuses.” His response hit me like a punch in the gut. OUCH! Do I really convey such a lack of understanding or sensitivity? I hope not and trust that his comment had more to do with his knowing how active I am and then comparing himself to me.

Two issues are at stake. The first has to do with excuses and the second is comparisons.

Excuses

We all have excuses. We use them to justify ourselves for the things we do or don’t do; our reasons why or why not. The question we must ask ourselves is do our excuses keep us from doing the things we want to do and can do? Please know that I am less concerned with what others think of my, or your, reasons and excuses than I am with why I, or you, have them.

The first question we must ask ourselves is can it be done and then, can it be done by me, or you?

Comparisons

Maybe it is human nature, or some flawed instinct that many of us possess. Whatever the reason, to varying degrees we all tend to compare ourselves to others. We do this at the most superficial levels and without regard to other considerations such as physical health, socio-economic factors, genetics, personality and a whole host of other reasons that make us all different.

While it may be human nature, comparing ourselves to others is just wrong. We are each unique in a million different ways. The only person that I can honestly compare myself to is me.

Did I do what I said I was going to do?

Did I do as much as I could do?

Did I do the best that I could do?

If I needed help, did I ask for it? Did I get it?

Am I being the person I want to be?

I do a lot of things and very few of them do I do alone. I have an extraordinary support system that surrounds me and allows me to all the things I am able to do. Everyone needs support and help. Some of us just need more or different help than others.

My hope for you, for all of us really, is that if we need help or support, that we are able to get it and that we do the best we can do. Who could ask for more than that?

Over the next several weeks I will revisit this issue of doing the best we can. I hope to include stories of others who do amazing things and make a difference in the world. I hope you will check back and let me know your thoughts and stories……or at least, do the best you can.

Participate. Make a difference. Live a life that matters.

Five Rules for a Happy Life

2010-04-13T12:53:00.000-07:00

I have my share of problems and challenges. I have stress, financial worries, children to worry about and a million other daily “life issues” just like everybody else does. I also have a disability and chronic disease that keeps me from working and walking. But none of that keeps me from waking up happy every day of my life.

I have broken down ‘my approach’ to life into five simple rules that I want to share with you. Why? Because they work for me. Maybe they will work for you too.

The rules are as follows:

RULE ONE: The last person you should be thinking about is you. If you are thinking about yourself, then have that thought start with “How fortunate I am”, “How lucky I am”, “How blessed I am.” Or ask questions like “How can I help?”, “What difference can I make?” But if you are thinking “Poor me”, get off the pity pot! Happiness begins with gratitude and making a difference to others.

Don’t get me wrong, we do have to think about ourselves sometimes. We have to take care of ourselves and our physical and spiritual needs. “Necessity is the mother of invention” and many of the advances that we enjoy today were the result of somebody having a problem and solving it. But if focusing on your own problems is getting you down, try focusing on and helping someone else. It will help. Remember, things could always be worse.

RULE TWO: Trust everyone. You will find that you make mistakes sometimes, but being trusting is a much better way to approach life. If you live and work in such a way that your life is an open book, you will have nothing to worry about, people will trust you and be trustworthy.

RULE THREE: Know that everything in life happens for a reason. Expect life.

Scott Peck begins his book “The Road Less Traveled” with three simple and powerful words: “Life is difficult.” He goes on to explain that the challenge many of us face has to do with our expecting life to be easy and it isn’t. He then goes on to say “that once we see this truth, we transcend it.” In other words, just knowing and expecting that life will be difficult, makes it less difficult.

Some people I know say “always expect the worse and you will never be disappointed”. I disagree. Remember, everything that happens in life happens for a reason. We get to choose what the reason is. Find something of value in every event and circumstance and you will never need to expect the worst.

RULE FOUR: Make a difference. Be involved with something. Don’t just be a member. Be a participant. Show up. Don’t sit on the sidelines and watch everyone else have all the fun. Do more. Give more. Play more. Write more. Love more. If you want more out of life, if you want to be able to say “I got more then I gave”, be a participant.

RULE FIVE: If you are not happy about something, change it. If you can’t change it, then change the way you feel or think about it. The one thing in life that we can control is how we feel about things, our judgments. Exercise that ability and you will build strong character and be a happier person.

Problems? Challenges? Sure. I have as many or more than the next guy. But those problems don’t mean that my glass is half empty or half full. My glass is overflowing.

Participate. Make a difference. Live a life that matters.

Knowing what to be grateful for

2010-03-23T06:23:00.000-07:00

I get “A Quote of the Day” from the website “All About Gratitude” (http://www.AllAboutGratitude.com ) and love it. Gratitude is a recurring theme in my own writing and I believe that when it comes to being happy, it makes all the difference in the world. I also believe that many, if not most people, don’t know what to be grateful for.

Paul Taubman of “All About Gratitude” found this on the internet. I thought it was worth sharing. Enjoy!

I am Thankful:

For The Mess To Clean After A Party Because It Means I Have Been Surrounded By Friends.

For The Clothes That Fit A Little Too Snug Because It Means I Have Enough To Eat.

For My Shadow That Watches Me Work Because It Means I Am Out In The Sunshine

For A Lawn That Needs Mowing, Windows That Need Cleaning, And Gutters That Need Fixing Because It Means I Have A Home.

For The Teenager Who Is Complaining About Doing Dishes Because It Means She Is At Home, Not On The Streets.

For The Taxes I Pay Because It Means I Am Employed.

For All The Complaining I Hear About The Government Because It Means We Have Freedom Of Speech.

For The Parking Spot I Find At The Far End Of The Parking Lot Because It Means I Am Capable Of Walking And I Have Been Blessed With Transportation.

For My Huge Heating Bill Because It Means I Am Warm.

For The Lady Behind Me In Church Who Sings Off Key Because It Means I Can Hear.

For The Pile Of Laundry And Ironing Because It Means I Have Clothes To Wear.

For Weariness And Aching Muscles At The End Of The Day Because It Means I Have Been Capable Of Working Hard.

For The Alarm That Goes Off In The Early Morning Hours Because It Means I Am Alive.

And Finally, For Too Much E-Mail Because It Means I Have Friends Who Are Thinking Of Me.

- As seen on the internet

Participate. Make a difference. Live a life that matters.

What will you do?

2010-03-08T13:28:00.000-08:00

The National MS Society has declared March 8-14 “National MS Awareness Week” and the MS Foundation calls March the “National MS Education and Awareness Month”. With that said, the question is “what will you do?”

Over the past few years we have become increasingly involved with the National MS Society. What I have learned from that involvement is that most everybody wants to help. They just don’t know what to do. Below are a few suggestions and I hope they will help you.

Join one of 600 MS Walks taking place from coast to coast
Better yet, join our team, the JiggyWiggits on April 18th at the Greater LA Walk around the Rose Bowl in Pasadena. The Walk is a great way to spend the day and participate in raising money to find a cure.
Click here to Join or Donate or Find A Walk Near You

Become an MS Activist
This is easy to do, free and makes a huge difference. The more voices we have, the more we are heard. The more we are heard, the better the research funding, legislation, services and more for people living with MS.
Be an MS activist.

Be a volunteer
Volunteers are needed and make it all happen. They assist with all the big events (The Walk, the Bike Ride and Challenge Walk) and with individual support and activities (Peer counseling, financial aid, referrals and resources).
Click here to Volunteer

Learn something new and share it
There is so much to know and so much information available that it is impossible for any one person to stay on top of it all. Fortunately, the National MS Society does a pretty good job of that. But having the info on their website is not enough. It needs to be read and shared with others. Learn something new about research and treatments and share it with someone you know.
Learn Something New About MS Research and Treatment

Join an MS Support Group
If you live with or are caring for someone with MS, then there is probably a Community Support Group near you. These groups provide a forum for the exchange of information and ideas on living better with MS. Join the community. No one has to go through this alone.
Support Groups In Southern California
Find a Chapter of the MS Society near you.

Host your own fundraiser
Carwashes, bake sales and lemonade stands. There are a million ways to help raise money for research and treatment of MS. All you need to get started is to click here:
Host your own fundraiser

Ask somebody to donate to the cause
For many people, fundraising is a four letter word. But after years of experience, I know how to make it easy. Ask the people that you give money to for help. Ask your doctor, lawyer or accountant to donate. Ask your insurance agent, electrician or plumber to help. And, if you ask everyone that you give money to for a donation, they will do it. It is a very simple concept. “You wash my back and I will wash yours.” But if you don’t ask, you don’t get. So do it today. Send them to our link. You’ll feel good and they will too.
Click here to Join or Donate

The first step is to increase awareness. With increased awareness comes increased funding. With increased funding comes a cure. We can all be a part of the cure for MS. The only question is “What will you do?”

Participate. Make a difference. Live a life that matters.

A Pill That Is Not Hard To Swallow

2010-03-03T12:49:00.000-08:00

This entry is specifically for people with MS.

Today I was contacted by a representative from Acorda Therapeutics to talk about AMPYRA, the newest drug to be approved by the FDA specifically for people with Multiple Sclerosis. The drug is designed to improve walking speed and ability. They want to get the word out to our community and have contacted several bloggers to help them do that. That’s where I come in.

I am also uniquely qualified to talk about this drug because its main ingredient is 4-aminopyrodine (4-AP for those in the know), which I have been taking for the past several years. The good news about 4-AP is that it works. The bad news is that it is not an FDA approved drug, is only available through compound pharmacies and insurance companies won’t pay for it. Now all of that is changing.

To varying degrees, many of us with MS have difficulty walking. In clinical trials AMPYRA helped improve walking speeds by as much as 25%. Having taken 4-AP, the main ingredient in AMPYRA, I can tell you that I walk better and feel stronger when I take it and that is a good thing. Keep in mind that AMPYRA is not a substitute for one of the disease modifying drugs and will not impact the course of an person’s MS. But it will improve walking ability for many who take it.

Were there side effects? Yes, there is a risk of seizures and we knew that when I started on the drug. At first I took 10 mg a day. No problem. Then 20 mg a day and then 30 mg a day. No problem. Then I took 40 mg and BAM! I had a seizure that night. I dropped back down to 20 mg. a day and haven’t had a problem since.

The recommended dosage is 10 mg. twice a day. There is no evidence of incremental benefit with increased dosage, so don’t take more or you might have a seizure! Also, do not take AMPYRA if you have kidney or renal problems.

Here is what they won’t tell you…..4-AP is a leading brand of bird poison. It causes seizures in birds and that is what keeps them away. Who figured out that it might be good for people? I love modern medicine.

Acorda Therapeutics, the company that is marketing AMPYRA, is making the product very affordable for almost everyone. Like many drug companies, they have a program for the uninsured and under-insured who qualify, to receive the medicine at no cost. For those of us with insurance, the company has agreed to limit our co-pays where allowed (Sorry Massachusetts residents) to $40.00 per month. This is much less than what I pay the compounding pharmacy each month and that’s a good thing.

To learn more go to:
http://www.ampyra.com/consumer
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm198463.htm
Or watch a video from the National MS Society at:
http://www.youtube.com/watch?v=8E7DUwkAQv4

Walk better. Then sign up to do one of the more than 600 MS Walks taking place from coast to coast. Bring a friend or join us. You, and your friend, will be glad you did.
Join Us At National MS Society - Walk Event:

Participate. Make a difference. Live a life that matters.

Because it is Valentine's Day

2010-02-13T22:40:00.000-08:00

Recently, one of my oldest and dearest friends had a stroke. He survived, yet it was a shock to all of us. Then, just a few weeks later, another dear friend had a heart attack and survived. It seems as though they have both fully recovered, but WOW! What a wake up call, not just for them, but all of us who were paying attention.

After my first friend’s stroke and just before my other friend’s heart attack, my little half-sister fell and broke her leg. Following her surgery, she had complications with her breathing. You see, our little Naomi did not know how to swallow correctly and her lungs filled with fluid. Soon she was on life support, and shortly after that, it became clear that she would never recover. As a family, we all agreed that taking her off of life support was the right thing to do. Naomi died just a day later.

Naomi had severe developmental disability (It is no longer considered appropriate to use the term “retarded”.) She was 39 years old and others who had a similar condition had never lived beyond 30 years of age. Though her life was not particularly long, it was not a short life. It was certainly long enough for her to have had an impact on a number of people.

I tell you this because it is Valentine’s Day. Though Valentine’s Day is traditionally reserved for lovers, I think it is a good time to tell everyone you love that they matter and make a difference…before it is too late.

Telling people that we love them would be a great habit to have every day. But if you are like me, you may not take the time daily to communicate this message to those you love most and just assume that they know. If that is as true for you as it is for me, then I encourage you to use Valentine’s Day to get the word out.

In fact, if you are reading this, please know that you make a difference to me and I love you for that.

Participate. Make a difference. Live a life that matters.

Staying in the race.

2010-01-26T13:46:00.000-08:00

I love to run. Now that may come as a surprise to many of you, especially since I use a walker or wheelchair today, but it’s true.

I started running about 15 years ago, late by most runners standards, and I was not a typical runner. Truthfully, I was a jogger and some runners would say that jogging is not the same as running and they are right. So for arguments sake, let’s say that I love to jog.

When I started jogging I weighed about 234 pounds, a substantial amount for anybody 5’8” tall and especially a jogger. I started out, probably like a lot of people, on a treadmill, first with walking and then jogging a few steps, then walking and then jogging again and so on. Eventually I got to the point where I could jog constantly for 30 minutes. At that point I had become a real jogger.

How much jogging did I do? A fair amount. I would get up and jog a 5K almost every morning, at least 5 days a week. Do you know what happened? I lost weight? Do you know what I discovered? If I jogged, I could eat whatever I wanted and not gain weight. What a great deal that was! I jogged, which I loved to do, and I got to eat whatever I wanted. I had found the formula for a happy life.

In time I did a number of 5K events, even a few 10K’s. But a 10K is only 6.5 miles and I needed to go further. Joggers and runners talk about being in the zone. The zone is both a mental and physical state that enables you to keep going. It transcends distance and exhaustion and you keep moving. It is difficult to explain or to expect someone to understand unless they have been in the zone, too. For you non-joggers, you are just going to have to trust me on this one.

Early one Saturday morning I set out to jog a greater distance. I did not know how far I would get, but I was going. I put my wife on alert that she may have to pick me up at some yet to be determined location and I was off. A few hours later she picked me up. I had jogged 13 miles, a half marathon. I did it and I still had a lot more in me. I was about to become a long distance jogger.

No matter how you do it, jogging, walking or running, it still takes a lot of time to go 20 miles. That distance, 20 miles, became my regular weekend run and it took me 4.5 to 5 hours to do. I would leave my house between 5:30 and 6:00 in the morning, drive to Beverly Hills, park the car and head to the ocean…..and back. A pretty good run, or jog, by almost anyone’s standards.

I kept up my jogging for many months, though in time it was less and less. Why? Mostly because of work. It got to a point where I usually worked six days a week and 10 to 14 hour days were more common than uncommon. Eventually work had replaced jogging altogether.

A few years later, I started having problems with my legs; numbness, tingling and weakness. I called the doctor and in a matter of days was diagnosed with multiple sclerosis. Since that time, the disease has progressed and my walking is very limited and requires a walker. Obviously my jogging days are over.

Today I use jogging as a metaphor. I get up every day and ‘put my sneakers on’, metaphorically speaking, that is. I still sign up, register and prepare for life’s big events and know that to be a participant, I have to go the distance to cross the finish line. We all do…..if we choose to.

About two years ago I was introduced to Mitchell, an extraordinary man who has survived incredible life events including a plane crash and motorcycle accident. Today he is confined to a wheelchair and says "Before I was paralyzed there were 10,000 things I could do. Now there are 9,000. I can either dwell on the 1,000 I've lost or focus on the 9,000 I have left." Clearly he is focused on what he can do. (www.wmitchell.com )

I can’t jog anymore. But not being able to jog doesn’t keep me out of the race. I still participate. I do what I can and focus on what I can do. In many ways, I am busier and happier today than I have ever been. I write, travel, skydive, speak for the MS Society, socialize and much more.

I am still in the race.

Participate. Make a difference. Live a life that matters.

It starts with the decision: "It can be done."

2010-01-01T18:12:00.000-08:00

It starts with the decision: "It can be done."

It's New Year's Day. As is our custom, we woke up, turned on the TV and began watching the Rose Parade and then I saw them. The Ohio State School for the Blind Marching Band. WOW! A blind marching band. Who thought of that? The answer is "somebody did."

To me, it was both impressive and beautiful. Their story is better. The band existed, but did not start marching until the Ohio School for the Deaf revived its football program and requested a marching band. Fantastic on all accounts. (Learn More)

The fact is that doing the impossible always starts with someone having the idea that it can be done.

This is true for any and every advancement that we as a species have ever made. Advancements in science, politics, sports, human rights, technology, the arts and so on have all resulted because someone decided it can be done.

When Roger Bannister broke the four minute mile barrier in 1954, our world was forever changed. He did it because he believed it could be done and the impossible was suddenly possible. Since that time, scores of people have run a four minute mile. Is a three minute mile possible? It won’t until someone decides it can be done. For me, I have learned to never say never.

I am relatively certain that I will never run a four minute mile (or five or six minute mile either!). But because there are people who can and do believe that things are possible, the impossible, the unthinkable, the unimaginable has become possible. Today we know that you can never prove a negative. That is, you can never prove that something will never happen. What we can do is continue to make advances, even if only at a fraction of a second at a time.

The treatments we have today for cancer, diabetes, heart disease, AIDS and MS were all non-existent just 30 years ago. Will we cure all of these diseases? We won’t unless we think it can be done.

It is a now 2010. It is a time for me to ask myself “What can I do?” I have a few ideas and if I do them, I promise to let you know about them. My hope for the new year is that you will ask yourself the same question.

Participate. Make a difference. Live a life that matters.

My Bucket List Just Got Shorter.

2009-12-22T10:01:00.000-08:00

I have wanted to do it for years. I was going to do it for my 50th birthday and couldn’t because I weighed too much, so I waited. I lost weight (30 pounds) and for my 52nd birthday, I did it. I jumped out of an airplane and went SKYDIVING.

Like most first-time jumpers, I did a tandem jump. This means that I was tied to, strapped to and hooked to an experienced jumper. It also meant that I did not have to worry about opening my parachute. It was done for me.

There was nothing for me to worry about. When I was at the door of the plane readying to jump, there was no time to say “Wait, wait, wait!”, or even think about it. Before I knew it, my ‘travel partner’ and I were out of the plane and free-falling.

Free-falling. Now there is a term. Let me explain what freefalling is like.

Imagine a roller-coaster ride. The ride climbs to the top and then WHOOSH! You are dropping at about 75 to 85 miles per hour and the drop, rarely more than 100 feet, lasts for two to three seconds. Although you are safely strapped in and seated in a metal car, your hands are in the air as you scream with delight; perhaps the longest two or three seconds of your life.

Free-falling is different. Your airplane climbs to 12,500 feet and then you jump. A small chute opens quickly so that you are face down and slowed to 120 miles per hour. You ‘fall’ at that speed for just over a mile, about six thousand feet, and for about 30 seconds. (Want to know how long thirty seconds is? Count it out saying “One thousand and one, one thousand and two”, etc) Also, there is no metal car. Just your own personal cheerleader, riding on your back and encouraging you the whole way down.

Sensory Overload. My arms instinctively spread wide like a bird. The goggles protect your eyes, but my cheeks were flapping in the wind, while my heart raced and my mind went numb! Too much to absorb. Too much to take in all at once.

I looked down and was amazed at how high up in the air I was. As far as I was concerned, I could see for hundreds of miles. The thrill, the excitement and the adrenaline were like nothing I had ever experienced before. I quickly understood why so many make this there sport of choice.

Finally and suddenly the parachute opens. The next seven or eight minutes are spent coasting to earth…..albeit at a much faster speed than I had expected. Most of that time was spent regaining my composure, high-fiving my travel companion and trying to absorb everything I had just gone through.

Jumping with me were my son, Adam and my good friend Randy. It was Adam’s first time too. But it was Randy’s 359th jump and he goes solo. While the rest of us were outfitted with helmets and jumpsuits, Randy wore only a t-shirt and shorts. He jumped first and did about eleven summersaults before opening his parachute. What a guy. What kahunas!

There were other experienced jumpers on the plane, jumping in groups of three to five and doing aerial formations on the way down. What a sight. Poetry in motion…..very fast motion.

Of course, I had something that no one else on the plane had: a disability. I was prepared and the crew was ready for me. It turns out that this particular skydiving location accommodates people with disabilities regularly and they knew just what to do.

They wheeled me out to the plane and instantly lifted me onboard. Their skill, knowledge and confidence made me comfortable and secure. My only question was how would I land? They had an answer for that too.

My legs were strapped together around my knees and ankles. As we descended towards our landing, the ground crew was waiting for me. They were there to make sure that my legs stayed up, in front of me and did not fold underneath me. Smooth and gentle, just as I like it….and expected.

The whole experience was very different than I expected. Years ago I took a flight lesson in a small Cessna four passenger plane. The sense of flying I felt was like nothing I had ever felt before. It was as though I knew just how a bird felt as they soared across the sky.

Since then, I have wanted to try other flying activities like gliding and hang gliding. While I never did either of those, I have gone para-sailing and loved it. It too gave that sense of soaring through the air.

I did not have that feeling at all while skydiving. Even after the parachute opened, we were still moving too quickly to feel as though we were soaring through the air. I did not feel like a bird, but I sure did feel a whole lot else.

You may know or have already guessed that skydiving is not cheap. In fact it is expensive, about $200 per person for a tandem jump. But you can do it for FREE!

There is a new no-profit group called Skydive4free.com and they have affiliated with skydive locations all over the country. All you have to do is raise $500 for your favorite charity and you are good to go. Visit their web site at www.Skydive4free.com and get all the details.

Do good in the world. Raise some money and do the jump. Then cross another item off of your bucket list.

Participate. Make a difference. Live a life that matters.

Topsy-Turvy

2009-12-11T13:19:00.000-08:00

Topsy-Turvey. Sometimes called higgledy-piggledy. But whatever you call it, that is how we roll.
On-line dictionaries define it as:

1. with the top where the bottom should be; upside down.
2. in or into a reversed condition or order.
3. in or into a state of confusion or disorder.

Yeah. That’s us. That is my wife and I. I don’t think that we would have or want to do it any other way. Our lifestyle would drive other people nuts, but it absolutely how we live our lives.

We are constantly going, doing, hosting, inviting, including, having, making or participating in something. When we are home, our home is always open and the parade of characters constantly coming through is endless. We are almost always spontaneous and are known as the “Late Night Gerbers.” Yup. That’s how we roll.

A good example was this year’s Thanksgiving dinner. OY!

We decided to do a little work on our home before the holidays and instead opened Pandora’s Box. A little work turned into a lot of work. The day before the holiday we still had painters, electricians, plumbers and artisans all working in the kitchen! We actually had to set up a make shift kitchen on our back patio to prepare the holiday feast. Except for the oven, the kitchen was off limits to us. In fact, the day of the dinner we still had some workers their up until 30 minutes before guests arrived. Madness, mayhem and chaos right down to the wire.

In the end, we had 23 guests for dinner, the house looked beautiful, the food was great and a good time was had by all.

The only question is why? Why would anyone want to live their lives that way?

The best answer I can give is that we both choose to be involved in as much and as many activities as we can. We also love the people we love and want to give them as much as we can. What we can give them is our home, a safe place, a refuge and a respite…..and sometimes a warm meal. We can also lend an ear, share a joke or tell stories about our latest adventures.

Our lives are full, adventurous and exciting. We are rich beyond our wildest dreams in every way that really matters….except for money that is. Most of all, we get to be exactly who we want to be in this world and that is a great privilege for which we are extremely grateful.

Does it come at a price? Of course it does. It means that our lives are chaotic, upside-down, disorganized……Topsy-Turvy. We wouldn’t have it any other way.

Participate. Make a difference. Live a life that matters.

Exclusivity

2009-12-02T13:16:00.000-08:00

People with a disability are excluded for one of two reasons. The first reason being that they are actually excluded because of their disability. The other being that they exclude themselves because of their disability. Both may be valid. Both may be wrong.

Two years ago we travelled to Paris, France, truly one of the world’s greatest cities. “C’est magnifique!” I loved it and yet, found it to be a very challenging place to travel to. In a very short time we noticed an absence of people in wheelchairs and soon discovered why. Nothing is accessible. One evening we spent over two hours looking for a bathroom. While we found the people very accommodating, most facilities were not.....which explains why we saw few people in wheelchairs. They are excluded because of physical and structural limitations. (In all fairness to France, the government is quite aware of this problem and is working hard to remedy it.)

People, with or without disabilities, are often excluded because of their own physical limitations. You can’t sit in an exit row of an airplane if you can’t walk. You must be a certain height to ride a rollercoaster. You must weigh under a certain weight to go skydiving. All limitations driven by safety and liability concerns. Very valid. Very reasonable.

Less reasonable or valid are those instances where a person is excluded from participation because it may inconvenience someone else. How much inconvenience should one be expected to endure? Having doorways and aisles that are wide enough for wheelchairs. Putting bars on the wall in bathrooms. Modify a workspace for an employee. That is a personal choice or a subject for our lawmakers to debate. Generally speaking, here in the states there are many laws in place to insure the inclusion and protection of those of us with disabilities.

My bigger concern has to do with the countless instances where a person with a disability has excluded themselves from participating simply because of their disability. We know this happens when we see an absence of, or less than representative participation in activities by those with disabilities. This is true in politics, medicine and business. It is also seen in sporting activities, talent shows and at job fairs. The list goes on and on. Certainly there are exceptions, but it is definitely not the norm…..and it needs to be that.

Much of our world has been made greatly accessible to those of us who have disabilities and yet, we often do not participate. Why? Inconvenience? Embarrassment? Whatever the reason, it may not be good enough.

Not participating means not living life to the fullest. “To the fullest” is different for each one of us. But at the end of our days there is only one question. Did we? Did we visit family and friends? Participate in events and activities for our loved ones and community? Did we do all that we could have done?

Did we go to school or work and make a difference in the world? Did we go skiing, fishing or climb Mount Everest? Did we play sports, travel or go skydiving? Did we go to every concert, presentation or event that we could have and if not, why? The world is filled with people with great physical limitations who do amazing things. The world is also filled with great opportunities for those of us with disabilities.

Those of us with disabilities need to take advantage of what has been made available to us. How can we ask for more or better treatment when we don’t take advantage of what is already there? My personal goal is to increase the visibility of disability. When we do that, or when we have done enough of that, then we can expect our inclusion to be the norm…..even in the most exclusive of settings.

Participate. Make a difference. Live a life that matters.

Today I am thankful

2009-11-26T11:29:00.000-08:00

Happy Thanksgiving. I have a very long list of all that I am thankful for. This is just a part of it.

At the top of the list is my wife. She is everything to me. She gives me a life and love. She is my companion on this journey and being with her makes everything better.

Then there is my family. Our two great kids who are both good, smart, kind and a never ending source of joy. Then my siblings, which includes my brother with his huge heart and sister, who continues to become more extraordinary every day. Then my parents. My father, who is always teaching by his example and my deceased mother, the most amazing woman ever, who is still with me all of the time. My family also includes my mother and father-in-law whose support of and for us is endless. I can’t imagine our lives without them. That is my immediate family and I am thankful for each one of them.

Then there are my friends and what a wild and crazy bunch they are. Their commitment to us is constant, as is their companionship. There is not enough time to spend with all of them. But there is more fun, entertainment, support, encouragement and love than I ever could have hoped for.

Then there are my abilities which I do not take for granted.

I used to jog everyday. Now I can walk just a little and am very grateful for that ability and all of my abilities which are many. I can see, hear and listen. I can feel and care. I can think and reason. I can speak and communicate. I can make choices about my life everyday, wake up happy and grateful, make each day good for me and others, make a difference to someone or something or not.

These are some of the things I can do everyday and for all of them, I am grateful…..and thankful.

Our world is filled with millions of people who are struggling, starving, at war, abused, lost their jobs, homes, faith or hope. I do feel for all of them and yet, am thankful that I am not among them.

Today is Thanksgiving and today there is much that I am thankful for. I hope that you are feeling very thankful today too.

Participate. Make a difference. Live a life that matters.

Are we having fun yet?

2009-11-20T23:06:00.000-08:00

The real question is, if we are not having fun, why not? Fun is a choice, a perspective and an attitude towards life. So if you are not having fun, it may be time to ask yourself why not?

Life’s challenges and circumstances provide all the fodder any of us need to have fun. Being able to laugh (especially at ourselves) and have fun make having to deal with our challenges all the more do-able and bearable.

In our house we like to play a game that I call “Fun With Hearing Loss.” My hearing is just not as good as it used to be and there is no telling what I am going to hear. In fact, what I hear sometimes is pretty funny stuff. Our MS Walk Team is called the “JiggyWiggits” and the name comes from my constantly singing the WRONG lyrics to a song a like. Can you guess the song?

When I am out and about in my wheelchair, especially at hospitals or airports, I have made a habit out of pulling my chair up next to someone “older” than me that is also in a wheelchair and asking “Are you here for the races?” The response is almost always the same. First they are startled by the question and then they laugh. The wheelchair allows me to spread a little good cheer that I could not have done otherwise.

My doctor never knows what to expect from me. Not long ago he wanted to check my coordination. He sat in front of me on his little round stool (doesn’t it seem like every doctor has one of these?) with his hands on his knees and said “Go like this”, He then flipped his hands over repeatedly and quickly. So I did exactly as he did. I reached over, put my hands on his knees and began flipping them back and forth. The look on his face was priceless. I am sure that no patient had ever done that before. A memory I am not soon to forget, all because I was willing to have fun.

I am not the only one who thinks that having fun is a good idea. Even Listerene has gotten into the act and created a mouthwash for children. Where there is plaque on the children’s teeth, the teeth turn blue (Only temporarily! It’s easy to rinse.) The blue encourages kids to do a better job of brushing and that can’t be a bad thing.

The fact is that having fun and making things fun can and does make the world a better place. It makes people laugh, brings smiles to faces and can break up the monotony or tensions of an otherwise mundane activities or ordinary day.

Recently I received an e-mail which directed me to a website hosted by Volkswagon at www.thefuntheory.com. On the site it reads “This site is dedicated to the thought that something as simple as fun is the easiest way to change people’s behaviour for the better. “ Wow! What a concept! I was blown away by that idea.

Spend a few minutes on the website and you will discover some of the fun ideas they have implemented to get people to take the stairs instead of escalators, throw away trash and recycle. It is brilliant clever and wonderful.

What is also wonderful is that they are looking for more ideas and having a contest and the entry deadline is December 15th. Do you have an idea that could change people’s behavior and make the world a better place? If you do, I hope you will take the time to visit the website, enter the contest and help us all to have more fun.

Hmmm……..Having fun when and where it is not expected? Changing people’s behavior for the better? That sounds like a choice we could all make.

Participate. Make a difference. Live a life that matters.

The Lesser of Two Evils

2009-11-14T13:36:00.000-08:00

This blog was written with the help and editing skills of my good friend, Vicki Bridges.

Life does not always give us perfect choices. If it did, decision making would be easy. All too often the decision to choose one thing means choosing to not have something else. And then, of course, there is the risk involved with any decision, even the ones that seem good for us.

For instance, have you ever watched and listened to a television commercial for a pharmaceutical drug? They are funny and scary at the same time. If you listen to the lightning speed disclaimer at the end, you have to ask yourself "Why would anybody want to take this?"

"May cause nausea, vomiting or dizziness."

"May cause liver or kidney failure."

"May cause stroke or heart attack."

"People who are pregnant, smoke, breathe, have a pulse or who want to live should not take this drug!"

The fact is that virtually every medicine we take to combat a disease or condition has a side effect. The question is, how do we decide? Some decisions are easier than others. Sometimes it comes down to choosing the lesser of two evils.

Recently I had to make one of these decisions. I have multiple sclerosis which is a currently incurable disease that effects the central nervous system, but some of the many symptoms can be managed or eliminated. One of my symptoms can best be described as electrical shock activity in the body, sometimes annoying and sometimes downright painful.

My doctor suggested I try Trileptal to reduce the neuropathic pain and it worked. The problem was it also gave me a side effect: fevers.

Fevers? That doesn't sound so bad. Take two aspirin and call me in the morning. But this is MS and it is not that easy.

Many of us with MS are sensitive to heat and this includes fevers. Though the pain went away, my energy was sapped away by the fevers and I could barely move, barely walk (with a walker) or even get out of bed. For me, that was an easy decision to make. I could readily live with the MS evil of recurring pains better than I could with the side effect of constant, extreme weakness. But not all decisions are so easy.

In the MS world, there is a newer disease-modifying "miracle drug" called Tysabri. It has improved function and quality of life for tens of thousands of people with MS. But it does have many side effects including: severe brain damage (PML), liver damage, and death. The side effect (called PML) has only affected about 23 people out of more than 40,000 who are currently using this treatment. Technically, I suppose that there is a very low risk of being "adversely affected," but I could be number 24. So for me, that side effect is too great a risk to take.

How do we make the difficult decisions about which drugs or treatments to take?

Below are my considerations when making these decisions. It is not an all inclusive list, but if it helps anyone, I am glad that I wrote it.

Have a doctor you trust.

Talk to your doctor and insist that he/she explains things so that you understand.

Are the side effects worse than the condition?

What is the benefit to be realized?

What is the risk and are you willing to accept that?

What is the risk of not taking the drug?

I would love to hear about your experiences and suggestions too. Perhaps together we can develop an all inclusive list.

Participate. Make a difference. Live a life that matters.

What can I give you today?

2009-11-05T11:14:00.000-08:00

Today is my 52nd birthday and I do not have a gift picked out yet for all of you.

You may recall that last year at this time I published a blog about my birthday philosophy (Click Here). That is that my birthday is a time for me to celebrate those who are closest to me and those who make a difference in my life. This includes family and friends, and it includes all those who read, comment and inspire me through my blog. To me, that means that some of you deserve gifts, some acknowledgements and others need to know and trust that you really do matter to me.

I don’t drive, so I did not go shopping. Besides, money has been very tight this year and I can’t afford to buy all the gifts that my friends and family deserve……and they are very deserving. So what can I give them instead? What can I do to express my gratitude and affection for those who matter most to me?

One of the things that I think I do best is having relationships with people. I care. I communicate. I listen. I support. I truly want the best for the people I love most and I think they know that.```````````

So my gift this year is to do the same…….more of the same. I will continue to care and listen. I will continue to offer you my perspectives on life and I (we) will continue to keep our doors open for those seeking respite, companionship, laughs and friendship.

Yes, there are many things that I cannot do physically or fiscally. But what I can do and give is more of the same.

Hmmm………More of the same is my gift to you? I think I have just figured out what to give myself.

Participate. Make a difference. Live a life that matters.

Kind of matters.

2009-10-31T09:49:00.000-07:00

Have you ever tried changing lanes on the LA freeway system? Fought for a parking space at Costco on a weekend day? Waited in line only to have someone jump in front of you and had to say “Excuse, but I think I was next???” If you have, and have had those experiences repeatedly as I have, then you will understand why I say that I never expected our world to be a particularly kind place. Each man for himself. Survival of the fittest. Dog eat dog and so on.

It turns out that I was wrong. Our world is filled with kind people. I know this because I am the beneficiary of random acts of kindness from complete strangers almost every day of my life. Living with a disability has taught me that.

My disability has progressed as my disease has. In time I needed a cane, then a walker and now use a wheelchair from time to time. As my disability became more visible to the outside world, I began experiencing more and more of these acts of kindness.

I used to travel for work and often someone, a complete stranger, would see my awkwardness, grab my bags and help me get on or off a shuttle to or from the airport. One day I was getting in my car and dropped something as I was fumbling with my keys. A stranger driving down the street pulled over, jumped out of his car and handed me the dropped items. Random acts of kindness from complete strangers. WOW!

These repeated experiences have completely changed my view. The world is filled with kind people who are willing and ready to help a stranger. Random acts of kindness are much more common than I ever dreamed of and as the beneficiary, I make it a point to acknowledge and thank these people from the bottom of my heart.

But kindness is often more than performing a simple task or favor. Kindness reveals itself in many different ways. It may be in the form of an anonymous donation to a cause or simply picking up an item at a store for someone because it may be wanted or needed.

Kindness can be the act of just listening to a loved one or a complete stranger who just needs to be heard or get something off their chest. It could be as simple as saying “hello” and “how are you” to someone who rarely gets asked at their job or work, like a cashier or bank teller or someone working behind the counter at a fast food franchise.

Kindness reveals itself in a thousand different ways. But it always is a selfless act that for at least a moment, makes someone else’s life better. I know. Acts of kindness continue to fill every day of my life.

I have learned to expect the best from people and am rarely ever disappointed. There are times when I need help and today I am confident that I always can and will always find it. It turns out that the human race is a pretty good one to be a part of. My faith is restored. Kind people are kind people and there are plenty of them.

That has been my experience. What is your experience? Is the world a kind place? Or is it cruel? Do people really care about their fellow man? I would love to know about your experiences.

Participate. Make a difference. Live a life that matters.

Denial: A Basic Survival Skill

2009-10-18T09:37:00.000-07:00

A friend of mine who is a psychologist, told me that I am suffering from “Chronic Euphoria”. She says I am far too happy for my circumstances and teases me about being in denial. The truth is that she is right. I am in denial. In fact, it may be our most important survival skill.

We all live with varying degrees of denial. If we didn’t, we would never leave the house. Fatal car accidents occur every day. But not to me. Houses and buildings burn down every day. But not where I am. I live in Los Angeles and someday there will be a catastrophic earthquake. But it won’t hit my house. A certain amount of denial is required for us to be able to function in this modern world of ours. I consider this a ‘healthy level of denial’.

What is an unhealthy level of denial? Denying what already exists. My psychologist friend is worried that I may be in denial about how my disease/disability affects others around me. I don’t think so. In fact, I think I am particularly sensitive about how my disease affects others, especially my wife who is my primary caregiver. In many ways this disease (multiple sclerosis, for those who don’t know) is harder on her than it is on me. I am aware of that. No denial here.

Unhealthy denial may also occur when we deny that we have control or influence over circumstances in our lives. Or, at a minimum, controlling how we respond to those circumstances, events relationships, etc.

Healthy denial may be denying a possible adverse outcome. Denying a possible adverse outcome is also how many of us function every day. Car accidents, burning building and earthquakes occur almost daily, sometimes more often. If we really thought that these events would hurt or kill us, we would run and hide. We, or at least most of us, live our lives with an expectation that “bad things” won’t happen to us. While it is true that bad things happen all the time, we don’t expect them to happen to us.

I do know people that always expect the worst. To me, denying possible positive outcomes may be the UN-healthiest form of denial.

I live with a chronic disease and there is a great possibility that my condition may worsen. I know that and don’t deny it. But I live my life in anticipation of good things, accomplishing physical goals and expecting new treatments to improve my quality of life. To me, that is healthy denial and that is okay with me.

According to my psychologist friend, there is no such thing as “healthy denial.” Instead, she says that these are coping skills and being able to cope with the realities of life is good….and healthy. She is probably right.

Call it healthy denial, coping skills or whatever you like. Being able to accept reality is always healthy. There is no denying it.

Participate. Make a difference. Live a life that matters.

Get out your POM-POMS!

2009-10-06T17:25:00.000-07:00

I use wheelchair or walker everywhere I go. So you may be surprised to learn that yesterday, for the second year in a row I crossed the finish line at the MS Bike Ride.

Okay. I didn’t do the bike ride. But I was there and had an extremely important job to do: Greet and cheer for all the riders as they rode past the finish line.

My job, all of our jobs really, was to thank and express gratitude to those who are making our world a better place. Very few people have a physical disability that prevents them from cheering and acknowledging those who are making a difference. Besides, it is a lot of fun……..and there is free food too!

Theodore Roosevelt put it best when he said “No man has the moral right to withhold his support from an organization that is striving to improve conditions within his sphere.” I couldn’t agree more.

When it comes to making the world a better place, we can be participants in events, give money (which is always good) or give visible moral support to those that can and do these activities. It is important. It makes a difference. It is our obligation.

I used to be a jogger. I frequently paid my $20 or $25 registration fee, got my souvenir t-shirt and participated in these 5K or 10K events. At that time, it didn’t matter to me what the money raised was for. It could have been for Cancer, Capricorns or comedians. I just wanted to do the event.

Today when I am there to greet the participants at the finish line, I am in my wheelchair. I am a sort of visible representation and reminder of why they are riding and who they are riding for. When I say thank you, they know that I mean it from the bottom of my heart.

We (my family and I) do our own fundraising for the National MS Society. We also make donations to other organizations throughout the year (Diabetes, Alzheimer’s, AIDS, etc.). When we can, we also give money to others raising money for the same causes.

We lend our visible support at the Finish Line. It is our way of saying thanks and job well done. What it also does for us is keep us involved. Being surrounded by all that energy and excitement gets our blood flowing and gets us out of our daily routine. It also gives us an opportunity to make a difference to those who are making a difference for us.

Get involved. Become a cheerleader. Swing a pom-pom. Say thank you. Get a friend to join you. Feel alive. Be at the finish line. You, and the participants, will be glad you did.

Participate. Make a difference. Live a life that matters.

The Family Treasure

2009-09-27T12:34:00.000-07:00

Michael Josephson of Character Counts is one of my favorite commentators. He recently published this story and I wanted to share it with all my friends. It is about choice.

“A 6-year-old girl I’ll call Sarah knocked over a display case that contained a much-cherished vase once owned by her great-grandmother. Her mom loved that vase and frequently referred to it as the family treasure. The vase hit the floor with a loud crash and shattered into pieces. Sarah, shocked and frightened at what she’d done, screamed and began sobbing.

Her mom came running into the room fearing the worst. Seeing the shattered vase, her heart sank. Then she saw Sarah sitting on the floor wailing. “I’m sorry, Mommy. I’m sorry, Mommy. I broke the family treasure!”

Seeing despair on her daughter’s face, the mother’s heart plunged further.
Faced with two powerful and conflicting instincts – one toward anger and blame, the other toward compassion and forgiveness, she sat next to Sarah, pulled her on her lap, and kissed her tears. “Sweetheart, when I ran in here, I was terrified that something bad had happened to our family’s most precious treasure. But thank God, you’re okay. Sarah, you are the family treasure.”

Sarah’s mom turned what could have been a painful incident and a lifelong source of guilt into an enduring source of affirmation and worthiness.

I wonder if I would have had the presence of mind to realize in the instant after an upsetting event that I could choose my reaction and that my choice would have a permanent impact on someone I love.

The reaction of Sarah’s mom was nothing short of heroic and stands as a reminder that, even in the face of powerful emotions, we do have choices – and they really matter.

This is Michael Josephson reminding you that character counts.

This is my variation of a parable told by Rabbi Steven Carr Reuben, which in turn was derived from a true incident from one of his congregants.”

You can subscribe to his weekly newsletter at www.charactercounts.org/michael

Participate. Make a difference. Live a life that matters.

Sense and Sensibility

2009-09-22T22:28:00.000-07:00

When I talk about senses, I am not talking about sight, smell, touch, taste, etc. I am talking about something perhaps a little bigger. I am talking about those senses which give meaning to our lives. I am talking about having a sense of who we are in this world that we live in.

Sense of independence
When I gave up driving four years ago I worried that I would lose my sense of independence. I have not. What I have learned is that my independence is not dependent on my driving, ability to get my own meals or take care of all my daily needs. My independence is found in my thoughts, feelings, actions and words. Yes, my disability requires me to be more dependent on others than I ever dreamed of. But thankfully, that is not where my sense of independence comes from.

Sense of community
We all belong to something that is bigger than ourselves. But belonging is not enough. We must be participants too. Being a participant means that our goals are not driven by just what is good for ourselves. Instead we are driven by what is good for everyone.

Sense of humor
“I don’t think that I should use self-deprecating humor. But I think you should.”
We must first be able to laugh at ourselves. Then we can laugh with the world around us. Laughter leads to joy and joy is contagious. Be the source and cause of laughter. Life is too short to go without it.

Sense of wonder.
Marvel at the world around us. Be impressed by the beauty of life. Find majesty in sunsets and awe in the miracle of life being created. Be inspired by the power of the human spirit. Love the fact that you are alive and savor everything that life has to offer.

Sense of purpose
This can best be defined as the quality of having a definite purpose in life. Know why are you here and find the meaning your life has. Make a difference to someone or something and wake up everyday feeling great about the opportunity that each day offers.

We may lose our sense of taste or smell as we get older and that is okay. What we really want is to develop these other senses. After all, it may be the only truly sensible way to approach life.

Participate. Make a difference. Live a life that matters.

Two Emotional

2009-09-13T17:11:00.000-07:00

There is a theory, perhaps a philosophy, which says that there are only two emotions: Fear and Love. Everything else falls under one of those two emotions.

So why is this important? It is important because if we can recognize our negative or “fear driven” emotions, we might be able to do something about them. When we control our emotions, we control our lives. Of course we may not always have control over what happens in our lives, but we can control how we feel or respond to what happens.

Recognizing our emotions is relevant to every aspect of our lives. How we feel about our relationships, money, politics, health, work, prejudices, and more are all determined by whether we are coming from a place of love or fear.

Racism and prejudice are driven by fear. That a person looks different is the cause of that fear. Being different makes them ‘unknown’ and we are always, or at least often, afraid of that which we don’t know. Once we get to know someone who looks different, that fear and our prejudice goes away. Fear of the unknown is a most basic and primal fear. But we are humans and can reason and rationalize and overcome our fears….and our prejudices.

Using a wheelchair makes me different and I experience a kind of fear and prejudice when I go out in public. I often make it a point to be particularly friendly in order to help others overcome their fears. Once that is done, they can treat me with love and don’t we all deserve that?

Fear based emotions rarely do us or anyone any good. These include hate, prejudice, distrust, doubt, pessimism, disgust and more. Love based emotions would be just the opposite; love, acceptance, trust, confidence, optimism, respect, etc.

Being able to recognize our emotions and fears gives us the opportunity to examine our feelings and ask ourselves “What are we afraid of?” If we can do that, we might not only be able to change how we feel, we just might change the world.

Participate. Make a difference. Live a life that matters.

Why my disability is better.

2009-09-06T00:25:00.000-07:00

As I see it, disability comes to us one of three ways. We are born with it. We have a disease or condition that is progressive. Or, it is the sudden effect of some trauma or event. This is a generalization and I know there are exceptions to these rules, but bear with me.

In my case, I lived many years in good health before getting my diagnosis of multiple sclerosis. The diagnosis was found after experiencing some minor symptoms (tingling, numbness and some leg weakness).Since then there have been many more symptoms and “disabling conditions.” Because it is a progressive disease, these symptoms have “revealed” themselves to me over time, giving me the opportunity to adjust and make necessary changes both physically and mentally.

I consider this time to make adjustments a real advantage to having MS, or any other degenerative condition. Although I may not know what the future will be, I do know that I can count on time to adjust.

Now someone who is born with a disability may feel as though they have an advantage. It is what they have always known and nothing to have to get used to. Nothing has been “taken away” and there is no adjusting or adjustment to be made. Their life is the same as it has always been.

The person who has had an accident or sudden trauma as the cause of their disability may feel differently altogether. Yes, they have had to make adjustments, but typically only once and then they are done. Their physical condition may be forever changed, but there is no uncertainty about their future. What is done is done. They know what they have and what they have to deal with.

We may not have control over whether or not we have a disability. But we always have control over how we feel about it.

Whatever the nature or cause of our disability, or whatever challenges or conditions we may face in life, I hope that you will see and embrace its advantages. In other words, be grateful for what you got. It is the hand we were dealt. Let’s play it as best we can.

Participate. Make a difference. Live a life that matters.

“This is going to hurt me more than it hurts you.”

2009-08-30T23:05:00.000-07:00

“This is going to hurt me more than it hurts you.”

Did your parents ever say that to you? Usually it was mentioned just before giving out a punishment or a spanking (Something we don’t do any more!) Geez! What a bunch of malarkey…..or so I used to think. Living with multiple sclerosis has taught me otherwise.

Not for all, but for some, pain is a chronic, recurring and sometimes constant condition for many people who live with MS. I know this because my MS causes me to have a variety of pains most every day. Sometimes the pains are great and cause me to use expletives!

Some of the pains can best be described as something out of an old horror flick.

Imagine that a mad scientist has strapped you to a table and attached electric cables to your body. The cables are then attached to a machine with a large knob on it. Then, as our mad scientist turns the knob a jolt of electricity is sent to and through your body. Sometimes the mad scientist turns the knob just a little. Sometimes he turns it a lot, sending a giant bolt of electricity to the body. OW! I think that best describes some of the pains I feel. (If you are interested, my friend, Vicki Bridges has written a series of articles about MS and Pain that can be found on Health Central by clicking here: http://www.healthcentral.com/multiple-sclerosis/c/32873 )

But there is another pain that many of us with MS don’t get and that is the heartfelt pain experienced by those closest to us, those who love and care for us most. That is the pain they feel when they see us struggling with our pains and whatever challenges we face with our MS. Living with MS is not easy for me, but it seems to be even more difficult for those closest to me who often can do nothing more than watch it happen.

This is probably true for anyone who cares for someone who is ill and/or living with a disability or chronic condition. It seems that many of us who live with a condition may have accepted our pains more readily than those who love and care for us have. Our remembering that may help us to help those also affected by our condition.

I never spanked my children (although there were times when I wanted to throw them through a plate glass window), although I am sure that I earned my share of “potchkes on my tucchus” while growing up. But somehow today, living with a disability, I seem to understand how my condition “hurts them more than it hurts me.”

Participate. Make a difference. Live a life that matters.

Reality Check

2009-08-22T13:12:00.000-07:00

My big brother, Howard, has always been one of my teachers and role models. He taught me how to tie my shoes and to tie a necktie. Years later, he went into real estate sales. Then I went into real estate sales. He went into the mortgage business. I went into the mortgage business. The list goes on and on. He was and is a great big brother.

He also taught me that there is a great distinction between the events that occur in our life and our experience of them. For instance, my stories come from my personal experiences. Are they actually what happened? Yes and no. What they are is what I actually experienced. There is a huge difference between the events that occurred and what I experienced. Both are valid. Both are true….but not necessarily the same.

I will never forget when this truth about experience vs. what happened first hit home for me. It was back in the early 80’s and I was very involved with an organization called Quantum Management Systems. The group did several things including a weekend seminar. The seminar was the kind of transformational experience that was very popular at the time, much like EST, Life Spring, etc.

Sometime around 1982 my brother took that weekend seminar. As a repeat attendee, I could attend as a guest without paying and sit in the back of the room and I did. At one point, my brother got up to speak and he talked about his childhood, our mother and what it was like for him to grow up in our house. It was a very compelling story and everyone, including me, felt very sorry for him and the challenges he faced growing up. However, as I listened to him, there were two things that I kept forgetting. One is that I was listening to my own brother and two was that we grew up in the same home!

If you had heard both of us describing our childhoods, you would not even know that we were related. Why is that? We were both raised in the same house at the same time, with the same events and the same parents. But we experienced all of it very differently. Who was right? Both of us.

What caused this disparity in experience? Was it our age difference? That he was the older sibling? Did I get more attention because I was a sick kid? Whatever the reason, what is clear is that our history is based on our experiences and not the events themselves.

This may be one of the most important lessons that I have learned from my brother. Our feelings about what happens define our experience and feelings are always valid. They are, after all, how we feel. We cannot change our history or change the events that have already taken place. What we can change is our experience. How we feel is within or control.

That is exactly what my brother has done. He has chosen to have a different experience of his childhood. As he puts it “The events are still the same but I was allowed to perceive those events and, ultimately, my experience differently. It was a simple matter of changing my mind.” It may be more difficult than he makes it sound. After all, we often have a lot invested in stories about our history.

Knowing and being able to make this distinction between events and experiences helps me. It helps me to understand others and better understand myself.

I know that I am right about this. After all, that is my experience.

Participate. Make a difference. Live a life that matters.

Ball and Chain

2009-08-15T00:28:00.000-07:00

August 15th is a very special day for me and my family because Christina is getting married on that day. Who is Christina? She is an extraordinary and beautiful young woman who has taught me more about attitude, gratitude and perspective than anyone I know.

We met Christina when she was eleven years old. She and our daughter Jenica went to middle school together and quickly became best friends. Always a welcome guest in our house, we included her in our family activities whenever possible. She was, and still is one of my 'favorites'.

Christina's mother died when she was only five years old. Less than two years later, her younger sister died. Then, before turning fifteen, her father died. They all died of AIDS. In other words, Christina had no one to call family.

We knew Steven, her father, well and everyone, including Christina, knew how much he loved her. Before passing he made arrangements for her to have a guardian, Ronna, who watched over and guided her as she continued to grow and blossom and that she did.

From a young age she had to make choices of and on her own. What choices did she make? Life affirming choices. She chose to wake up and be happy every day of her life. She chose to be grateful and express gratitude for every little thing. She chose to make a difference in this world and she does.

How easy and understandable it would have been for Christina to have made different choices. But she didn't. Not having two parents for most of her life and having only one parent to see her reach her teens, could easily have been her handicap in life. But it isn't. Instead, it has been a positive, driving force for her.

After her father's death, she chose to join the "Fight Against AIDS." At seventeen, as soon as she was old enough, she joined and completed the AIDS Bike Ride, a seven day, 500 mile bike ride from San Francisco to Los Angeles. Her father, like several others, had joined the ride, but was too sick to make it to the finish line. Later she finished it for him. The ride triggered the making of a documentary, "No Distance Too Far" featuring our very own Christina.

After doing the AIDS Ride, Christina began speaking at middle and high schools and colleges, too. She talked about her own life and AIDS prevention. Later she volunteered and spent several months providing AIDS education to workers in small towns throughout Ghana. Christina continues her fight against AIDS today and works as a Marketing & Prevention Associate for the Colorado AIDS Project.

Today, on her wedding day, Christina, her husband to be and several friends are doing the AIDS Walk in Denver. Their team is called “Ball and Chain.” (http://aidswalkcolorado.kintera.org/faf/search/searchTeamPart.asp?ievent=305922&lis=1&kntae305922=28ECA339159C4DFB875732F71EABD6E0&supId=0&team=3419358&cj=Y )

Christina makes a difference in the world. I know because of the difference she has made in my life. She is marrying Sean today, a great young man. What I like most about him is that he "gets" all of what is so special about her. He is a lucky man. She is lucky to have someone who values her so.

Christina and Sean,

May you blessed throughout your years together. May you both continue to make a difference in the world and to each other. May your hearts always remain as filled with the love and gratitude you feel for one another as they are today.

Love you both,

Michael

Participate. Make a difference. Live a life that matters.

Can I Sing The Bass Line?

2009-08-07T11:22:00.000-07:00

Puberty came early to me. I actually started shaving at ten years old. By the next year I had the deepest voice of any student in my junior high school. (They call them middle schools today.)

Two years later, the Temptations had a number one hit with “Papa Was A Rolling Stone” and I knew then that when I grew up, I wanted to be the bass singer in a black soul group. A heck of a dream for a short, white Jewish kid from East LA.

Move the clock ahead 20 years to 1993 and I am a mucky-muck in the mortgage business, attending a private party in Washington DC for about 900 people. The host had hired entertainment for the evening which included the Four Tops and you guessed it, the Temptations.

Since I was a mucky-muck, I had front row center seats. As was their custom at the time, the Temptations would invite, or drag if necessary, one man and one woman from the audience to join them in singing a song on stage. They picked me and did not have to drag me on stage.
Being the professionals that they are, the lead singer would help the “guest artist” by matching pitch. Immediately I knew what to do and asked “Can I sing the bass line?” They graciously agreed and the bass singer stepped back while gesturing “it’s all yours.”

So there I am, on stage performing with the Temptations. Me, the short, white Jewish kid from East LA realizing his childhood dream of being the bass singer in a black soul group. Together we sang “My Girl.” It doesn’t get much better than that.

The point and the lesson is this: DARE TO DREAM. Sometimes our dreams and wishes do come true.

Today I live with a disability that keeps me from working. What it does not do is keep me from dreaming. I learned from the Temptations that anything is possible.

What is my wildest fantasy today? I want to play Tevye in “A Fiddler On The Roof.” Will it happen? I don’t know. What I do know is that f I don’t have the dream, it will never happen.

What is your dream?

Participate. Make a difference. Live a life that matters.

Twenty-nine years ago today.

2009-08-03T00:01:00.000-07:00

It was exactly twenty-nine years ago today that I was married and my life was forever changed for the better. I was going to write a blog about it, just like I did last year. Then, after reading what I wrote then, decided that last year’s entry said it all. So if you missed it last year, here it is again.

Please read and enjoy. It’s about the love of my life.

It was exactly 28 years ago today (Now 29 years) that my wife Gail and I went to the best wedding celebration ever – OURS. If you could ask any of the 325+ people in attendance, they would all say the same thing – Best wedding ever.

What started out as something great,. has grown into something greater, more important and more meaningful than I ever could have imagined. After 28 years of marriage, we are now in the best place we have ever been. I can honestly say that I am more “in love” with my wife today than I have ever been before. She is, without a doubt, the sweetest, kindest, most caring and considerate, selfless and loving person I have ever known. I am a lucky man and feel truly grateful to be able to spend every day with her.

When you have been married as long as we have, we can look back and recognize the tough patches we made it through. We certainly have had our share of them. We were even separated for 14 months many years ago, from June ’86 to August ’87. During that time an expert on marriage (he’s been married four times!) told me that “staying married is its own reward.” I believe that until you have been married for 15 or 20 years, you can’t really begin to understand how true this statement is. There is an intimacy and level of comfort that comes from knowing someone so well and for so long, that can’t be explained. It is to be experienced.

Ask people who have been married a long time what the key to success is and you will get a lot of different answers. “Respect.” “Friendship.” “Patience.” Those are all good. But I have a different answer and that is “GRATITUDE.”

Maybe it is easy for me to say because I am married to Gail. Or maybe t is easier for me to say because of my disability and my needing so much help that she so readily provides, which makes me feel particularly grateful. Whatever the reason is, I never let a day go by without really letting her know how much I love her and how grateful I am. I believe that if one is truly grateful, expresses it and shows it, than the other stuff (respect, friendship, patience, etc.) will take care of itself. It certainly seems to work for us.

There is a side benefit too. When you really love someone, and feel truly in love, even after all these years, the beauty remains in the eye of the beholder…..and I am truly beholden to my beautiful wife.

Happy anniversary, Gail.

I will love you always,

Michael

Three parts to communication; Listening, Telling and Being Heard

2009-07-23T19:00:00.000-07:00

Everyone talks and most everybody listens. Most of us are better at one of those skills than the other. However, all of us could probably use a little improvement in another area of communication which may be the most important and least considered……..Being heard.

What do I mean by being heard? Being heard means not just hearing, but listening and understanding. Great teachers are often great communicators. They also can tell when their message is not getting through or being understood. When that happens, they go back and repeat, re-phrase or ask questions. Great teachers know that it is not enough to just give students the information. It must be received and understood as well. Great teachers, and great communicators, make being heard and understood their responsibility.

There are a number of ways to improve being heard. Some very simple suggestions are as follows:

Get permission.
Most of us are guilty of walking in on someone and telling them what we have to say, never bothering to see if we have their time and attention. If what you have to say is important, get permission first.

Pay attention to if you are being heard and understood or not.
Ask questions. That may be the best and easiest way to see if people are listening and understanding.

Be sure that your thoughts are clear.
If you are uncertain or unclear about what you have to say, then how can you expect others to understand? Make sure that you know what you want to communicate.

Explain why it is important.
Tell people why you are telling them this before you get started. A classic model for giving a speech is:
1. Tell the audience what you are going to tell them.
2. Tell it to them.
3. Tell them what you have told them.

While that may sound redundant (it is), it does work.

Repeat, rephrase, and re-clarify.
Good communicators can sense when the audience is not listening or understanding. When that happens, they say it again, or find a new way of saying it. They make sure that they are understood.

Clearly, not all communications require this level of thought or forethought. If your goal, however, is to be heard, than taking a few minutes to prepare yourself and the listener, will be time well spent.

Remember, good communicators do more than listen and talk. They take responsibility for being heard and understood. When it comes to communication, what could be more important than that?

Participate. Make a difference. Live a life that matters.

From 13 to 30

2009-07-16T11:25:00.000-07:00

Once I reached my thirties (I am now 51), I was able to look back and realize that I was not as smart as I thought I was. In fact, arriving at this age and time was actually a very humbling experience for me. Maybe you have had a similar experience. That experience was this: From the age of 13 to 30, I thought I knew everything there was to know. It wasn’t until I got to be in my thirties that I realized that I didn’t know anything at all.

For me, this observation was reconfirmed by being a parent. I have two wonderful and extraordinary kids (now in their twenties) who certainly know more about life and the realities of the world than I do. Just ask them.

If your children are anything like mine, then more than once you were told “You don’t understand” or were greeted by a rolling back of the eyes as you spoke to them. The obvious reason for this must be due to one thing: They know more than we do. I am certain that I did the same thing with my parents and I was a great kid (Naturally!).

It is part of the growing up process. A little independence goes a long way towards causing us to feel pretty good about ourselves and the world around us. If we have some independence (part of the growing up process) and are doing well with it, than we must know what we are doing….certainly more than our parents know. That is why and when as younger people we tell our parents things like “There is nothing to worry about” and “Nothing is going to happen.” I am sure that this confidence and belief serves us well as we begin to find our way in the world.

I am also sure that the humility that comes from learning, experience and recognizing that maybe we don’t know it all serves us well too.

The fact is that the older I get and the more I learn, the more I realize how much I don’t know. That is a good thing. It makes me a better listener. It keeps me a little more open minded. It help[s me tolerate being told “You don’t understand” because maybe, just maybe I don’t.

Participate. Make a difference. Live a life that matters.

Cynic or Optimist. Which are you?

2009-07-07T21:50:00.000-07:00

If your experience is anything like mine, than you probably know people who can only be described as “cynics.” What I have found to be universally true among my cynical friends is that they all deny being cynical and all say the same thing. “I am not a cynic. I am a realist.”

Non-cynics see them as cynics. We (and I include myself in that group) see their “realist” approach to the world as cynical, jaded, pessimistic and down right negative. Their reality is different than our own. It is shaded by skepticism, distrust and an expectation of disappointment. They also and always have tons of evidence to prove their point.

Non-cynics, on the other hand, tend to be positive, trusting, optimistic and filled with hope. We (including myself again) are the kind of people who really annoy the cynics in our world. They see us as being in denial, Polly Anna’s and unrealistic. The question is who is right? The answer is it depends on who you ask.

When we believe that something is true, than we are constantly looking for evidence to prove our belief. Below are some examples.

The cynic says “The weather is awful.”
The optimist says “There is no such thing as bad weather, just inappropriate clothing.”

The cynic says “Everybody lies.”
The optimist says “People only lie when they don’t feel safe telling the truth.”

The cynic sees “the glass as half empty.”
The optimist sees “the glass as half full.”

Ironically, cynics have not always been the pessimists we know them to be today. According to Wikipedia (http://en.wikipedia.org/wiki/Cynic ), “Cynicism originally comprised the various philosophies of a group of ancient Greeks called the Cynics, founded by Antisthenes in about the 4th century BC. The Cynics rejected all conventions, whether of religion, manners, housing, dress, or decency, advocating the pursuit of virtue in a simple and unmaterialistic lifestyle.” That doesn’t sound so bad, does it?

Wikipedia continues saying ” By the 19th century, emphasis on the negative aspects of Cynic philosophy led to a new and very different understanding of cynicism to mean an attitude of jaded negativity, and a general distrust of the integrity or professed motives of other people. Modern cynicism, as a product of mass society, is a distrust toward ethical and social values, especially when there are high expectations concerning society, institutions and authorities which are unfulfilled. Cynicism can manifest itself by frustration, disillusionment and distrust in regard to organizations, authorities and other aspects of society, and can result from a negative evaluation of past experiences.”

Hmmmmmm……..based on that definition, (rejecting conventions, advocating the pursuit of virtues, and being unmaterialistic) maybe I should be telling people “I am not a realist. I am a cynic.”

Participate. Make a difference. Live a life that matters.

Choosing our perspective

2009-07-01T15:26:00.000-07:00

What is perspective? It is more than just how we view everything. Perspective is how we choose to view everything.

Do we really have a choice about our perspective?

We make decisions all day long: what to eat, what to wear, what to do, etc. We are in complete control over those decisions. Yet somehow, we think or have decided that there is a distinction between those seemingly ‘practical’ decisions and the decisions we make about the feelings that we have.

The fact is each and every one of those practical decisions is based on feelings. We even use language that confirms that we have control over these feelings. “What do you feel like eating?” “What do you feel like wearing?” “What do you feel like doing?” At a minimum, we all have to agree that we have control over at least some of our feelings. That leaves us with only one question: why is it that we control some of our feelings and not all of them? The answer is simple. It is because we choose not to.

Aren’t some of our feelings beyond our control?

Choosing not to have control over some feelings, serves some people very well. If we do not have control over something, than how can we possibly be responsible for it? There is a certain logic there, albeit flawed logic. The reason it is flawed is because it is not true: if we agree that we can control at least some of our feelings, then logic says we must also have the ability to choose which feelings we control.

As adults we make decisions all day long that are based on our feelings. The next question is what distinguishes the feelings that we control from the feelings that we do not control? Is it the strength of the feeling? Is it rage? Depression? Euphoria? Whatever the reason is, who determines the controllable feeling from the uncontrollable one. The answer can only by us, ourselves. Yes, it is true and it does happen that sometimes decisions are made for us. But no one other than ourselves can decide how to feel. In other words, we may not be able to control all that happens in our lives, but we are always in control of how we respond. We get to choose our perspective.

Perspective is deciding how we feel.

Only we can make the decision about how we feel. Only we can know the reasons or reasoning behind our decision. It may be that we don’t know the reasons why we feel a particular way. But whether known or not, our perspective is our decision. It includes every moment of our history, every feeling that we have ever had, the sum of all the experiences that brought us to this time and place. Our perspective is our choice and no one else’s.

Do we always exercise control over our perspective? No, because we are still human and still fallible. But knowing that we do have a choice and that we can often do better, may help us in choosing a better perspective.

Participate. Make a difference. Live a life that matters.

What if you couldn't?

2009-06-22T13:38:00.000-07:00

This is not about sex. It really isn’t.

My friend has a beautiful, sweet, smart wife that he loves. They have two kids and a beautiful home and life together. What they don’t have is as much sex as he wants. He wants to have sex every morning (what he calls his “Breakfast of Champions”) and every night. His wife doesn’t have his appetite and so they only have sex a few times a week. Because of her ‘unwillingness’, he is thinking of leaving her. WOW! When I heard this I was shocked. Such a beautiful, happy couple on the verge of divorce and for what? Not ENOUGH sex. To me, that was an odd priority to base a relationship on.

One of the benefits I have gained from having a disability is that it makes me uniquely qualified to say and do certain things. This was one of those instances. I asked my friend what would he do if something happened to him and he no longer had the ability to have sex twice a day? What would he do then? I also asked him if he ever got really sick, who would he want by his side?

It was a fantastic moment. He understood immediately what I was asking and the point I was making by asking the question. You could actually see him re-establishing his priorities at that very instant. It is now several years later and they are still happily married. I haven’t asked how often they have sex. But I would bet that it is still not twice a day. More importantly, I would bet that they are going to be together, happily married, for many years to come.

As I mentioned, this is not about sex. It is about priorities and self examination. Most people will never have to deal with these questions. That is a good thing. What is also a good thing is taking the time to ask yourself questions and examine your own identity. “What if I you couldn’t” may only be hypothetical today. Having asked yourself the question and having considered it as a possibility, may prove to be beneficial if circumstances ever change and you are confronted with a new reality.

Participate. Make a difference. Live a life that matters.

Do we really have a choice?

2009-06-14T08:45:00.000-07:00

The moment we choose to have one thing, we are choosing not to have something else.

It is that simple. We cannot choose to lose weight and eat unlimited amounts of ice cream and cookies all day long. We will not have a monogamous relationship if we have sex with multiple partners too. We will never save $10,000 if we spend all of our money. Get it? It really is that simple.

Now the good news, make that the great news. We can have whatever it is that we want. It is such a simple statement and I hope you don’t miss the point of it. We can’t have everything. But we can have whatever we want. Why is that? Because we have choice.

It is true that the moment we choose to have one thing, we are choosing not to have another. But the real beauty and real power is that we have choice. We can choose to have whatever it is that we want.

Hold on! Wait a minute! That can’t be right!

Let’s look at it again. Our choices are limited, but not very. They are limited to whatever is within our control. I can flap my arms for hours, but I will never fly. I can buy a lottery ticket every week, but may never win. World peace? End hunger? That is not entirely up to me.

What is up to me and what I get to choose is whatever is within my control. What I eat, monogamy and how I spend my money are all within my control. Winning the lottery, world peace and ending hunger are not under my control. But they are subject to my influence. How do I influence the lottery? I buy a ticket. Influence world peace and hunger? Vote, make donations or volunteer. Flap my arms and fly? Not within my control.

Wanting things that are within our control may not be enough. We must also be willing to pay the price for them. Sometimes, the best way to know if we really want something or not is to ask ourselves “Are we willing to pay the price?” If not, then perhaps it is not that important to us. If so, we do what it takes to get it or get it done.

Our great challenge is in recognizing whether we control, influence or have no control over the events and outcomes in our lives. Once we know that and recognize that we have a choice, life becomes simpler…..and we can have whatever it is that we want.

Participate. Make a difference. Live a life that matters.

Everything in life happens for a reason.

2009-06-08T18:38:00.000-07:00

Experience has taught me that everything happens for one of two reasons. Those reasons are that we either have something to learn or something to teach, often both. I may not know the reason or understand why things occur and I don’t have to. Just trusting that there is a reason helps.

The real prize is that I or we get to decide what that reason is. It is up to us to find, create or associate a value to life’s circumstances. Why did someone lose their job? Why did someone have to die? Why do I have multiple sclerosis? I can answer that last question.

I have learned volumes about myself, the world around me and what it means to live with a disability. Much of the judgment I held about people with disabilities has been erased and I have become much more sensitive to how accessible our world is to those with physical challenges. I have also learned that though there are some things that we cannot control, we have influence over matters that we often never exercise.

Living with a disability has also been an extraordinary lesson in gratitude. All of us take much for granted. I now take far less for granted than I used to.

Most notably, I have something to teach. My children, friends and family all witness how I choose to live my life. Is it difficult for me to get from Point A to Point B? Yes, but I do it anyway. Do I ask for help when I need it? Yes, I have to and have discovered in the process that the world is filled with kind people. Have I found new ways to express myself and participate in the world? Absolutely.

People who know me can see by my example that “when life deals you lemons, make lemonade.” While all of that may sound like what I have learned (and it is), it is also what those who know me best have learned by observation.

“Everything in life happens for a reason” is not some cosmic or new age approach to life. It is a practical, humanistic approach that allows us to determine the meaning we give to our lives and the events that take place.

One can assume that life is a series of random, meaningless events. Perhaps it is. Perhaps not. Either way, giving reason and purpose to my life makes it all the more worth living.

Participate. Make a difference. Live a life that matters.

What defines you?

2009-05-29T00:14:00.000-07:00

My mom was a beautiful woman. As a young woman, she looked like Elizabeth Taylor in National Velvet. As she got to be in her thirties, she looked more like Mary Tyler Moore. She had a beautiful mane of brown hair and, as was the style at that time, she wore it big. Teased and standing what seemed like a foot over the top of her head. She was very easy to spot in a crowd. She was also the one person you did not want to have to sit behind in a theater. We are talking really big hair.

At some point during the 1960’s, she decided to become a platinum blonde, a fully teased, large mane, platinum blonde. In time, everybody knew her for her hair and she wore it that way for almost 40 years……except for once.

One year for her birthday, we decided to give her a makeover. A friend of ours was a hair stylist who also thought Mom was beautiful and was excited about doing the makeover. So we did it.

Mom looked beautiful. We did not change her hair color, but changed the size and shape and gave her a cut that was much more ‘current’. We changed her make-up and got rid of her orange and white lipstick (I don’t know when this look became popular) and shortened the length of her eyelashes. The makeover was a huge success. Mom looked tremendous and we had brought her up to date in our modern world. We had done something good and we were proud of ourselves.

There was only one problem. When Mom saw the makeover, when she finally looked in the mirror and saw herself, all she could do was cry! “My hair? What did you do to my hair? I look like a boy!”

I don’t think that she left her house for at least two weeks after that incident and I know that she must have spent hours every day looking in the mirror and trying to correct what we had done. Eventually she got a wig that, amazingly enough, resembled her own hair and she wore it until her hair had grown out enough for her to tease and resemble the “crown” she had worn for so many years.
Her hair, her mane, her look defined her. Without it, she was no longer herself. Without it, she cried and could not leave her home for fear that someone might see her. It was how she saw herself and defined herself. It was her identity and for a period of time, we had taken that away from her.

After she got her wig and once her hair grew back, none of us ever mentioned the “make-over” again. However, I don’t think that any of us ever forgot the incident, especially her.

On the surface, this identity crisis may seem shallow and vain. But in actuality, it was much more than that. It was how she saw herself in the world. Suddenly and abruptly, that was gone and she felt that she no longer fit in the world she had known for so many years.

The question is this: what defines you? What if you no longer had your hair? Or could not sing or dance? Or see? Or walk? Would your life be over? How would you deal with a sudden or abrupt change in your capabilities, or worse yet, how you looked? Is it how you define yourself and could you redefine yourself if you needed to?

For many of us who live with a disability, we have had to do just that: redefine ourselves. For me, having a progressive disease has allowed me some time to adjust to the changes my body is making. Others, those who have experienced an accident or some other traumatic incident, had to change their view, how they see themselves in the world, abruptly and quickly. The ability to do that is the difference between moving on with our lives or not.

There are a million reasons why we may have to change what defines us and not all are caused by disease or trauma. A change in jobs, relationships, finances, even weight can be reason enough. The question we need to ask ourselves is this: “What defines me and if I had to change, could I?”

Most people will never have to answer these questions and that is a good thing. Yet, self examination is always a good thing too. After all, if change does happen, we don’t want to “wig out.”

Participate. Make a difference. Live a life that matters.

Changing the world one song at a time.

2009-05-21T11:55:00.000-07:00

While walking down the street in New Orleans’ French Quarter, a friend and I walked by an elderly gentleman sitting on the corner smiling and greeting all the passersby. We acknowledged each other with hello and kept walking. Then I thought ‘he looks familiar’ and asked the friend I was with "Have you seen the video on YouTube of people singing Stand By Me? I could swear that man was in the video."

We turned around, walked right back and sure enough, I was right and that is how I met Grandpa Elliott. But that is just the beginning of the story.

Grandpa Elliott is a fixture, a personality in the neighborhood. Not everyone knows his name, but most seem to know who he is and on what corner he can be found. Spend a few minutes with him and you will quickly understand why.

I am guessing that he is in his sixties, maybe older. He has a full, bushy, white beard, a "jolly" physique, and wears glasses (Really just frames. There are no lenses.) that don't hide the twinkle in his eyes, or the fact that he is blind. He wears a funny, misshapen hat and a grin that you know is genuine and constant. Grandpa Elliott is happy man.

In a matter of seconds you are very engaged in conversation with this very charming and caring man. He wants to know about you and is ready to tell stories of his own life too. Whether talking about himself or you, the conversation quickly turns to song and he wants you to sing too. Don’t know the lyrics? He will start another song right away and before you know it, you are sitting on a street corner singing and laughing with your new friend.

I hope that everyone will take a moment to watch the YouTube video featuring Grandpa Elliott. The message is clear: We are one people, living together on one planet. When we remember that, we make it a better world.

I am certain that the memories of my meeting Grandpa Elliott will last a long time. More importantly, the lessons to be learned can last a lifetime. What is that lesson? That we can all make this world a better place one smile, one hello or one song at a time.

It turns out that I am not the first person to discover and appreciate Grandpa Elliot. If you go to www.youtube.com and search for Grandpa Elliot, you will find dozens of entries including one with me. OY!

Make today a great day for you and for someone else. Smile and say hello. Singing is optional.

Participate. Make a difference. Live a life that matters.

I am a survivor. We are all survivors......AGAIN

2009-05-11T06:50:00.000-07:00

I originally wrote and publshed this piece more than six months ago. Since then, much has changed in our world and economy. In re-reading this, it seemed much more relevant today than it did then. I hope you agree.

What prompted me to write this was not my disability. It was prompted by the current financial crisis that our nation, and our world is experiencing.

Sometimes we have to make adjustments that we never dreamed of making. Certainly, with my disability, that is what I have had to do. I am not alone. There are more than 50,000,000 people in this country who live with some kind of disability, many less severe and many more severe than my own. Every one of us has survived.

Many of my closest friends are struggling to make ends meet. Their world’s are changing and they are wondering what the future holds for them. Some of them have lost their homes and businesses. Some have moved to new cities. Many are wondering how will they pay their rent? Buy food? What will they do for a living? Very real, very difficult questions, all of which can be answered.

The simple and seemingly trite answer is that when the world changes, we need to change too. Because of my disability, I already know this to be true.

When I gave up driving more than three years ago, I wondered if I would sense a loss of independence. When I had to give up working more than a year ago, I worried about how we would make ends meet. As my disease progresses, I wonder what the future will be like.

What I have learned and know is that with whatever challenge comes my way, it will be dealt with. I will make the necessary changes and adjustments in order to get by. I will survive this ‘change’, because survival is what we do. It is a most basic human instinct.

The difficulty for those caught up in our financial crisis may be that they have not yet learned what I have from living with a disability. That is, to trust that they will make whatever changes are required in order to survive. Is it difficult? Yes. Is it painful? Yes. But it can be done and will be done.

Many of us remember the stories that our parents and grandparents told us about their growing up. My mother did not have a bedroom and slept on the floor of the dining room until she was teenager. My father-in-law is a Holocaust survivor and I won’t begin to tell you about what he endured against extraordinary odds. Many of us know stories about the Great Depression, with its breadlines and soup kitchens. God willing, we will never have to endure what others have. And yet, for a great number of people in this country, things may get worse before they get better.

Why am I saying all of this? I am saying it because we are survivors. It is a basic instinct that we all have. We will each do whatever we need to in order to survive. Will we need to get new jobs? Will we need to move? Will we become or take in roommates? Will we ask for help? We can and will if we need to.

It may not be pretty, or nice, or comfortable or easy to do. But all of us will do what we need to in order to survive. It is my hope that knowing that and trusting that is true helps us get through some of our most challenging times.

No one planned for this economic crisis. No one plans to live with a disability. But we do, because we are survivors.

Participate. Make a difference. Live a life that matters.

Watch Your Language!

2009-05-03T20:57:00.000-07:00

"Words are the envelopes that hold a person's experience of another person, place or thing." I learned this almost 30 years ago and knowing it has helped me learn to listen and speak differently. This is a matter of much more than semantics. The words we choose to use can and do make all the difference in the world.

As a person who lives with a disability, there are a few words that are commonly used incorrectly. If we use the right words, we have the potential to change the world's experience of people with disabilities. This applies to the observer and the person with the disability.

Disabled. This is the worst word of all. We disable an engine, which means turn it off. We disable a bomb, which means disconnect it. Last time I checked, I have neither been turned off nor disconnected. I am a fully functioning human being who lives with a disability. Not disabled. Many of us with a disability are often treated as though we have been disabled, turned off or disconnected, and this is wrong. Everyone has something that they cannot do, which means that everyone has some kind or level of disability. Mine, like tens of millions of others in this country, is just more visible than most others. Am I disabled? I am if you disconnect me or turn me off.

Handicap. The World Health Organization defines (in not so few words) a handicap as a person's judgment about a disability. This applies to the person with the disability and the observer. Is a disability a handicap? Only if we let it be. My father gave me a great compliment one day when he said "Michael, you are not handicapped. You may have a disability, but you are the least handicapped person that I know." I hope that can always be said about me.

There are other definitions of handicap. It can be an "added advantage " too. Shorter lines at airports and amusement parks, better parking spaces, discounts for travel, restaurants and more. It is also an advantage given to another in horseracing and golf -activities that many with disabilities don't do.

Person with a disability. This is always the right term to use. It is the term which allows the person with the disability to remain whole in everyone’s eyes. It is the term that contains the most respect and dignity for the individual. It also accurately reflects the condition of the individual.

Accessible. This is another correct term which is now used more and more instead of handicap. We now ask for accessible bathrooms, accessible parking, accessible hotel rooms. It suggests that the facility has been made accessible for someone with a disability, particularly those using a wheelchair. It is a correct term. After all, would you really want to stay in a hotel room that was handicapped?

Because I live with a disability, these words are important to me. I am certain that there was a time when I also used those other terms without much consideration. Now, as a member of the 51,000,000 member community of people in this country who live with a disability, I have changed my language and my perspective.

When we listen to the words someone uses, we can learn much more than the story they are telling. We can learn about their experience and perspective. Are they positive or negative? Accepting or judgmental? Responsible or victims?

When we change our own words, we can change how we see the world. More importantly, we can change how the world sees us.

Participate. Make a difference. Live a life that matters.

A Great Pitcher or a Bad Hitter?

2009-04-26T00:18:00.000-07:00

Michael Josephson is the founder of the Josephson Institute for Ethics and Character Counts. He is also one of my favorite commentators and his weekly newsletter is available for free. I strongly encourage everyone to subscribe.

Below is an excerpt from this week’s newsletter. I hope you enjoy it as much as I do.

“When Ron gave his 7-year-old son Nick his first ball and bat, Nick wanted to play immediately. Ron said, “Son, baseball’s a serious game. You have to practice before you can play well.”

The boy went outside and began throwing the ball high in the air and swinging at it over and over. After an hour, he came in and said, “Dad, can we play now?”

Ron followed him outside and said, “Okay, show me what you can do.”

Nick tossed the ball above him, took a mighty swing, and missed. “Strike one,” he said enthusiastically.

He did it again and missed again. “Strike two!”

Ron said, “Concentrate, Son. Remember, three strikes and you’re out.”

The boy tossed the ball a third time and swung so hard he fell to the ground after hitting nothing but air. Ron winced, but Nick had a triumphant grin.

“Why are you happy?” Ron asked.

“‘Cause I’m great at pitching!”

You have to love Nick’s attitude. He may not turn out to be a good hitter, but he’s likely to lead a happy life. What’s more, he’ll probably bring warmth and cheer into the lives of others because an attitude like his is contagious.

Pessimists might think people like Nick delude themselves by looking at the world through rose-colored glasses. Yet Nick’s world is just as he sees it. His decision to view himself as a successful pitcher instead of a bad hitter will not only make him happier, it may even contribute to his success.

It’s not easy, but if we develop the wisdom to treat frustrations and failures as empowering experiences and generate the strength to let go of self-destructive resentments and grudges, our lives will be filled with a lot more sunshine.

This is Michael Josephson reminding you that character counts.”

http://charactercounts.org/michael/2009/04/a_great_pitcher_or_a_bad_hitte_1.html

Participate. Make a difdference. Live a life that matters.

It is an honor.

2009-04-16T23:49:00.000-07:00

It is an honor for me to be included and recognized by so many people in so many ways.

My blog is now published on four websites and is viewed an average of more than 100 times per day. In just eight months my blogs have been viewed more than 22,000 times. I am truly honored that so many people have included me in their lives.

Our activities with the National Multiple Sclerosis Society continue to grow and expand. This Sunday is Walk MS 2009 and nearly 6,000 people will participate in the event. We expect to have at least 80 people walking with us and on our team. That will be our largest single group of walkers to date.

It is not too late to join and support us. Click here: http://main.nationalmssociety.org/site/TR/Walk/CALWalkEvents?px=4440260&pg=personal&fr_id=10168

As a result of our efforts, we have twice been included in the Society’s “Tour of Champions.” For us, being included in this group of top fundraisers from around the country is a great privilege. The participants are all extraordinary, motivated and caring. They are also all making a difference in the world.

Beginning next month, I will begin leading a Community Support Group for our local chapter of the Society. This monthly meeting is a forum for those of us affected by the disease to discuss and exchange information and ideas on living better with MS. For me, it is the next step in how I can better serve others living with and challenged by this disease.

FINALLY, (I saved the best part for last) I am on TV!
Our local NBC affiliate, KNBC, just aired a segment on "Living with MS" and our upcoming Walk and the segment features ME! If you missed it on TV, you can view some of the footage by going to http://www.nbclosangeles.com/health/topics/Living-with-MS.html There are four short segments to watch and they have really given me an opportunity to share some of my thoughts. If you already know me, there are no surprises. If you don’t me, than this is an opportunity for us to get acquainted.

I cannot begin to tell you how it feels to be asked, included and representing our MS community. The acknowledgement and recognition I get as a result of my participation is extraordinary. It is an honor.

My thanks to all of you for your continued encouragement and support.

Participate. Make a difference. Live a life that matters.