Saturday, September 27, 2008

The difference between nice and kind

As children we are taught that being nice is a good thing. “That was very nice of you.” As parents we teach our children to be nice to each other. “Be nice to your brother.” Generally speaking, we learn about being nice. We don’t learn about kindness.

Kindness is not something we are taught. It is an instinct. We either have it, or we don’t. I know this because as a person who lives with a disability, I am the beneficiary of random acts of kindness each and every day. As a result, I have also learned the difference between being kind and being nice. Nice is passive. Kindness never is.

As a healthy person living in the city, I never would have anticipated that the world was such a kind place. Have you ever tried to change lanes on a Southern California freeway? It often seems that most other drivers are just not letting you in. You have to ‘push’, be aggressive, make your way in to that next lane. We are taught to ‘drive defensively’ and that takes on a whole different meaning around here, especially on the freeways.

We are taught that nice guys finish last. We run to get a place in line at restaurants or movies so that we will beat others to it and don’t have to wait so long. We are taught to look out for Number One, because if you don’t, nobody will. Right? Not necessarily.

MS is a progressive disease. This means that my physical disability has become more evident over time. The more evident the disability, the more acts of kindness are bestowed upon me. Sometimes it is a small gesture, sometimes big. Often it comes from complete strangers. Regardless of the source or size, being that beneficiary has taught me that the world is an extremely kind place.

The instinct to help, to go out of your way for another person and to show consideration to a complete stranger, exists in a big way in our modern world. Whether it is the opening of a door, helping with a bag or chair, or just the offering to help, it is a constant in my life. It is also something that I never expected or would have anticipated.

Nice is good. But you can be nice and do nothing. Kindness is outstanding. It only exists when somebody is doing something. Do you know what kindness did for me? It changed the way I see the world.

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

Wednesday, September 24, 2008

The Disability Paradox

Are you familiar with the French Paradox? The French eat more of the richest foods in the world, enough to make your cardiologist’s head spin, and yet, they have an extremely low rate of heart disease. That is the paradox.

The question is why ? How could that be? There are lots of theories to explain this. It is because of the amount of red wine they drink. It is because they eat smaller portions or because they walk so much. Whatever it is, ‘good for them.’

Better than the French Paradox is what I call the Disability Paradox. That paradox is this: Many people living with a disability, with greatly limited physical ability, do the most amazing things. There are no studies to back up this claim and my evidence is purely anecdotal. But I have seen it over and over again. Hundreds, thousands, maybe even tens or hundreds of thousands of people who live with a disability, have the ability to do things most able bodied people would never do……or even dream of doing.

They run marathons, climb mountains, compete in the Paralympic Games and write books about their lives. They motivate and inspire us by their example. They do fundraising for organizations. They often are amazing parents, spouses and friends. These people have a disability and they make a difference in the world.

In January of this year, my wife, Gail and I attended the “Tournament of Champions” This event was hosted by the National MS Society and its purpose was to honor their biggest fundraisers from around the country. (HURRAY! We made it!) While there, we met dozens of the most amazing people, many with severely advanced MS and all of whom had done some fantastic fundraising for the association.

How could that be? So many people with such limited ability, who accomplished such great things. How did they do it? What was different about them? What did they have that enabled them to do so much…….so much more than most able bodied people?

My answers are only guesses. Perhaps because of their inability to do some things, the things they can do matter more. Maybe they don’t work and have more time to dedicate to doing these activities (often not the case). Maybe they care more about making a difference. Personally, I think it is because they care more.

I found a definition that defines a paradox as follows:

Person of opposites
A person of seemingly self-contradictory qualities

Maybe that does define a person with a disability. It sure does describe a lot of them for me. It definitely explains the paradox.

Certainly there are many able bodied people who also do amazing things and I know a lot of them. My observation is that they care more too. Imagine a world where everyone, whether able bodied or not, cared even more, participated more and made more of a difference in this world. I suppose that if everyone participated, there would no longer be a paradox.

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

Thursday, September 18, 2008

New symptom. New opportunity.

Living with a disease like multiple sclerosis, or many others for that matter, can be very unpredictable. One day you feel strong, the next day you don’t. One day you are asymptomatic. The next day you have a new symptom that won’t go away. Diseases are just like life. Every event, every instance falls into one of three categories:

The things we control
The things we influence
The things over which we have no control

I choose to exercise as much influence and control over my disease as I possibly can. Let me explain what I mean by that………

A few months ago, my right hip started to give out. Typically, when this happened I fell down….and I don’t like falling down! I went to see the chiropractor to get an adjustment. I went to the orthopedist and got an x-ray and an MRI. I went to see my neurologist and my physical therapist, too. Since nothing showed up on the x-ray or MRI, the consensus was that the weakness was caused by a weakening of the hip muscles…..caused by MS.

So here is what I did about it: I started exercising my right side. I exercised it at least four days a week. In time, I started exercising my left side too. Now, I exercise five to six times a week. Do you know what happened? My hip got stronger and stopped giving out and I stopped falling down.

About two months later, I started having lower back pains. I saw the chiropractor and the acupuncturist and that helped for awhile. But then, a few weeks later, the pain was back with a vengeance. It was so bad that I could not stand up or walk. I could barely move. At home, I normally use a walker to get around, but for a few days, I used a wheelchair in the house. The chiropractor came to my home. So did the acupuncturist. I was able to move, but only a little. I saw my neurologist and my physical therapist. Again, the consensus was the same: the disease was progressing.

The physical therapist explained it best: my quadriceps (the muscles of the thighs) had become so weak that the way I walked was putting a great amount of stress on my lower back, which wasn’t that strong either. “THAT’S GREAT NEWS” I said. “That’s something I can do something about.”

So I did something about it. I added exercises to my workout to strengthen my ‘quads’, lower back and core. Guess what is happening? I am getting stronger. These new symptoms may be the best thing that has happened to me in these past few years because they have put me in control of how I manage this disease. I am getting stronger, more disciplined and more determined to not allow this disease to overtake me, at least not yet. In fact, the physical therapist calls the exercises we do today “pre-gait exercises.” Pre-gait means “before walking.” Am I going to improve my walking? You bet. Will I be able to walk without a walker? We will see. What I will do is the best that I can.

We may not always have the ability to do something about what is happening with our bodies and our diseases. We can be defeated or energized. We can do all we can to combat what is happening or we can do nothing at all. We can focus on all the abilities that we have lost or focus on all the abilities that we still have. One thing is for sure, we always have a choice in how we respond.

New symptom? Bring it on. Teach me how to respond to it, manage it, beat it and be stronger. It is not easy. But it is my disease, my condition and it is my job to do as much as I can about it for as long as I can……which I plan on doing for a very long time.

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

Thursday, September 11, 2008

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

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

That is my personal slogan. That is my motto, my creed that I live by. Living with a disability, I am not able to do as much as I used to and that’s okay. I don’t have to do as much as I used to. Only as much as I can.

It is a very simple formula. Saying it backwards explains it all. Want to live a life that matters? Then make a difference to something or someone. How do you make a difference to something or someone? Participate. Participate in something that you really care about.

What do I participate in? As much as I can. When I worked (I am on disability today) I was very involved with my industry trade association. When my children were in school, I served on committees, chaperoned field trips and never missed a function. I did not just join these organizations and activities. I was an active participant. Today I am active with our chapter of the National MS Society. For the past two years we (my family and I) have had our own team at the MS Walk. This past year we had nearly 150 of our friends, family and a few strangers join us. Together we raised over $45,000 for the MS Society. As a team leader, I call that participating.

My best friend of the past 32 years is a theatrical producer. Several years ago he produced a musical called “The Last Session” and in it is one of my favorite songs; “When You Care.” Below is a video of the original Los Angeles cast doing a benefit performance of this song. I hope you will take a few minutes to watch and listen. I think these lyrics are as true as any I have ever seen or heard. I hope you do too.

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

Can't see the video? Click here:

Thursday, September 4, 2008

The options are limited.

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.