My Bucket List Just Got Shorter.

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

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

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

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?

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

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?

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.

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

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!

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

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

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

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.

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Why my disability is better.

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.

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

“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.”

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Reality Check

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.

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Ball and Chain

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

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Can I Sing The Bass Line?

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?

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Twenty-nine years ago today.

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

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?

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From 13 to 30

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.

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Cynic or Optimist. Which are you?

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.”

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Choosing our perspective

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.

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What if you couldn't?

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.

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Do we really have a choice?

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.

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Everything in life happens for a reason.

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.

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What defines you?

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.”

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Changing the world one song at a time.

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.

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

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.

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Watch Your Language!

"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.

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