I wrote this three years ago and came across it again recently. For me, it is more relevant than ever and I thought it was worth posting again. I hope that you agree.
I don’t remember all the details, but the moment is forever etched in my mind.
One day I was talking with a woman. We were just getting to know one another and she began to tell me about her life. It was extraordinary and amazing. I had never met or even heard of anyone whose life was filled with so much tragedy. It was truly extraordinary.
Her parents had died in a car accident when she was young.
Her first child was born severely retarded.
Her husband died leaving her with two children to care for, both under the age of ten.
She herself was battling cancer.
I think that is a lot for any one person to have to deal with. I even told her so. Then I asked “How do you do it? How do you get out of bed every day and face the world?”
Her answer was so simple. But at that moment it struck me as profound. Four simple words that I have repeated so many times since that day we spoke and that I will never forget. “The options are limited.”
Sure. She had a choice to make and every day she chose to get out of bed and face the world. She was alive and chose to live. In spite of her problems, her past traumas, and what seemed like insurmountable odds, she wasn’t done yet. As long as there was breath in her lungs, she was going to live her life the best she could.
Am I faced with challenges? Of course. We all are. Having problems is a condition of being alive. So I say bring it on. Let me face every problem as an opportunity. Let me deal with the challenges that I face in a way that makes me feel alive. Let me always remember the strength, courage and wisdom of the woman I met who taught me that “the options are limited.”
I love being alive. After all, the options are limited.
Participate. Make a difference. Live a life that matters.
Showing posts with label Reality. Show all posts
Showing posts with label Reality. Show all posts
Tuesday, January 31, 2012
Wednesday, December 7, 2011
Old Stories
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.
Sunday, October 30, 2011
Jim Morrison taught me how to sing.
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.
Tuesday, September 13, 2011
I was abducted by aliens.
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.
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.
Sunday, September 26, 2010
The Medical Report
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.
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.
Wednesday, June 30, 2010
Rejection has never felt so good.
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.
Monday, May 17, 2010
Doing the best we can. Part Two. When is failure a success?
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,
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.
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?
Participate. Make a difference. Live a life that matters.
Sunday, May 2, 2010
Do the best we can. Who could ask for more than that?
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.
Saturday, February 13, 2010
Because it is Valentine's Day
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.
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.
Friday, January 1, 2010
It starts with the decision: "It can be done."
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.
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.
Wednesday, December 2, 2009
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.
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.
Saturday, November 14, 2009
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.
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.
Sunday, October 18, 2009
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.
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.
Sunday, September 13, 2009
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.
Participate. Make a difference. Live a life that matters.
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.
Saturday, August 22, 2009
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.
Participate. Make a difference. Live a life that matters.
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.
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