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.
Saturday, February 13, 2010
Tuesday, January 26, 2010
Staying in the race.
I love to run. Now that may come as a surprise to many of you, especially since I use a walker or wheelchair today, but it’s true.
I started running about 15 years ago, late by most runners standards, and I was not a typical runner. Truthfully, I was a jogger and some runners would say that jogging is not the same as running and they are right. So for arguments sake, let’s say that I love to jog.
When I started jogging I weighed about 234 pounds, a substantial amount for anybody 5’8” tall and especially a jogger. I started out, probably like a lot of people, on a treadmill, first with walking and then jogging a few steps, then walking and then jogging again and so on. Eventually I got to the point where I could jog constantly for 30 minutes. At that point I had become a real jogger.
How much jogging did I do? A fair amount. I would get up and jog a 5K almost every morning, at least 5 days a week. Do you know what happened? I lost weight? Do you know what I discovered? If I jogged, I could eat whatever I wanted and not gain weight. What a great deal that was! I jogged, which I loved to do, and I got to eat whatever I wanted. I had found the formula for a happy life.
In time I did a number of 5K events, even a few 10K’s. But a 10K is only 6.5 miles and I needed to go further. Joggers and runners talk about being in the zone. The zone is both a mental and physical state that enables you to keep going. It transcends distance and exhaustion and you keep moving. It is difficult to explain or to expect someone to understand unless they have been in the zone, too. For you non-joggers, you are just going to have to trust me on this one.
Early one Saturday morning I set out to jog a greater distance. I did not know how far I would get, but I was going. I put my wife on alert that she may have to pick me up at some yet to be determined location and I was off. A few hours later she picked me up. I had jogged 13 miles, a half marathon. I did it and I still had a lot more in me. I was about to become a long distance jogger.
No matter how you do it, jogging, walking or running, it still takes a lot of time to go 20 miles. That distance, 20 miles, became my regular weekend run and it took me 4.5 to 5 hours to do. I would leave my house between 5:30 and 6:00 in the morning, drive to Beverly Hills, park the car and head to the ocean…..and back. A pretty good run, or jog, by almost anyone’s standards.
I kept up my jogging for many months, though in time it was less and less. Why? Mostly because of work. It got to a point where I usually worked six days a week and 10 to 14 hour days were more common than uncommon. Eventually work had replaced jogging altogether.
A few years later, I started having problems with my legs; numbness, tingling and weakness. I called the doctor and in a matter of days was diagnosed with multiple sclerosis. Since that time, the disease has progressed and my walking is very limited and requires a walker. Obviously my jogging days are over.
Today I use jogging as a metaphor. I get up every day and ‘put my sneakers on’, metaphorically speaking, that is. I still sign up, register and prepare for life’s big events and know that to be a participant, I have to go the distance to cross the finish line. We all do…..if we choose to.
About two years ago I was introduced to Mitchell, an extraordinary man who has survived incredible life events including a plane crash and motorcycle accident. Today he is confined to a wheelchair and says "Before I was paralyzed there were 10,000 things I could do. Now there are 9,000. I can either dwell on the 1,000 I've lost or focus on the 9,000 I have left." Clearly he is focused on what he can do. (www.wmitchell.com )
I can’t jog anymore. But not being able to jog doesn’t keep me out of the race. I still participate. I do what I can and focus on what I can do. In many ways, I am busier and happier today than I have ever been. I write, travel, skydive, speak for the MS Society, socialize and much more.
I am still in the race.
Participate. Make a difference. Live a life that matters.
I started running about 15 years ago, late by most runners standards, and I was not a typical runner. Truthfully, I was a jogger and some runners would say that jogging is not the same as running and they are right. So for arguments sake, let’s say that I love to jog.
When I started jogging I weighed about 234 pounds, a substantial amount for anybody 5’8” tall and especially a jogger. I started out, probably like a lot of people, on a treadmill, first with walking and then jogging a few steps, then walking and then jogging again and so on. Eventually I got to the point where I could jog constantly for 30 minutes. At that point I had become a real jogger.
How much jogging did I do? A fair amount. I would get up and jog a 5K almost every morning, at least 5 days a week. Do you know what happened? I lost weight? Do you know what I discovered? If I jogged, I could eat whatever I wanted and not gain weight. What a great deal that was! I jogged, which I loved to do, and I got to eat whatever I wanted. I had found the formula for a happy life.
In time I did a number of 5K events, even a few 10K’s. But a 10K is only 6.5 miles and I needed to go further. Joggers and runners talk about being in the zone. The zone is both a mental and physical state that enables you to keep going. It transcends distance and exhaustion and you keep moving. It is difficult to explain or to expect someone to understand unless they have been in the zone, too. For you non-joggers, you are just going to have to trust me on this one.
Early one Saturday morning I set out to jog a greater distance. I did not know how far I would get, but I was going. I put my wife on alert that she may have to pick me up at some yet to be determined location and I was off. A few hours later she picked me up. I had jogged 13 miles, a half marathon. I did it and I still had a lot more in me. I was about to become a long distance jogger.
No matter how you do it, jogging, walking or running, it still takes a lot of time to go 20 miles. That distance, 20 miles, became my regular weekend run and it took me 4.5 to 5 hours to do. I would leave my house between 5:30 and 6:00 in the morning, drive to Beverly Hills, park the car and head to the ocean…..and back. A pretty good run, or jog, by almost anyone’s standards.
I kept up my jogging for many months, though in time it was less and less. Why? Mostly because of work. It got to a point where I usually worked six days a week and 10 to 14 hour days were more common than uncommon. Eventually work had replaced jogging altogether.
A few years later, I started having problems with my legs; numbness, tingling and weakness. I called the doctor and in a matter of days was diagnosed with multiple sclerosis. Since that time, the disease has progressed and my walking is very limited and requires a walker. Obviously my jogging days are over.
Today I use jogging as a metaphor. I get up every day and ‘put my sneakers on’, metaphorically speaking, that is. I still sign up, register and prepare for life’s big events and know that to be a participant, I have to go the distance to cross the finish line. We all do…..if we choose to.
About two years ago I was introduced to Mitchell, an extraordinary man who has survived incredible life events including a plane crash and motorcycle accident. Today he is confined to a wheelchair and says "Before I was paralyzed there were 10,000 things I could do. Now there are 9,000. I can either dwell on the 1,000 I've lost or focus on the 9,000 I have left." Clearly he is focused on what he can do. (www.wmitchell.com )
I can’t jog anymore. But not being able to jog doesn’t keep me out of the race. I still participate. I do what I can and focus on what I can do. In many ways, I am busier and happier today than I have ever been. I write, travel, skydive, speak for the MS Society, socialize and much more.
I am still in the race.
Participate. Make a difference. Live a life that matters.
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.
Tuesday, December 22, 2009
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.
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.
Friday, December 11, 2009
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!
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.
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.
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.
Thursday, November 26, 2009
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.
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.
Friday, November 20, 2009
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.
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.
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.
Thursday, November 5, 2009
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.
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.
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