Saturday, November 29, 2008

I am not embarrassed.

I am not embarrassed by my wheelchair or walker. I am not embarrassed when I need help with meals or transportation. I am not embarrassed when my legs or hands are trembling or even when I fall down. I am not embarrassed by my disability. It is just life. My life. And, I would much rather have it than not have it.

Some people are embarrassed by their disability and I wish they weren’t. The fact is that every person on the planet has some level of disability. It is just that some are more obvious to the outside world than others. The truth is that everyone needs some help or assistance from time to time. I just happen to need more than most people.

If you are like me and you listen to the news, almost daily we get some new medical statistic. “Four percent of the population will get this disease.” “Six percent will get that.” “Two percent will get another.” The list goes on and on. The fact is that if we are lucky enough to live long enough, the chances are that we will all have some health issue to deal with in the future.

A few months ago a survey was completed which showed that more than 50% of Americans would rather die than live with a disability that prevents them from leading an “independent life.” I can only assume that these people don’t know me, or the more than 50 million people in this country who do live with a disability.

I am no expert on surveys, but WOW! What an awful number! In fact, it is worse than awful. It is terrible, shameful and a cry for more education and understanding. It also tells me that I, and many of the other 50 million people who live with a disability, are not doing a very good job of being a visible example to the rest of the world of what it means to live a full life with a disability.

My goal is this: to increase the visibility of disability. I want to change those survey results. I want to be an example to all that, even with a disability like Multiple Sclerosis, I am fully engaged, out there, alive and living a full life among the ‘more able bodied’. I want to show the world that life is worth living with an able heart and mind, even if the body has its challenges.

I am not embarrassed by my life. I am proud of it. How about you?

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

Sunday, November 23, 2008

Thanksgiving. My mother's legacy.

Thanksgiving is one of my two favorite holidays of the year. I am sure that my feelings have much to do with the fact that this was my mother’s holiday when she was alive,. She would squeeze 30+ people into every inch of space she had in her small home and serve a feast to everyone who was mandated to attend, and anyone who needed a place to go. After all, everyone needs a place to go on Thanksgiving.

Each year’s dinner started the same way: with the reading of the menu. It took her some time to read the list of the 14 or 15 items she had prepared, followed by thanking everyone else who had contributed. “I want to thank David for bringing the butter” or “A big thank you to the Jones’ for bringing the extra folding chairs.” The truth was that people wanted to help and bring things, but this was her show, her Big Night. Occasionally, she might allow someone to bring string beans or sweet potatoes. But that usually meant we had a choice of the guest’s dish or her version of the same item.

Probably the most unusual or crazy thing that she did for the holiday was a TRIAL RUN. The weekend before Thanksgiving, she would prepare all her dishes, pack them up in Tupperware and bring them to our house, about an hour away. The holiday itself was such a source of joy and pride, I imagine that doing it only once was not enough for her. TWO THANKSGIVING DINNERS and each one was so much work. Who do you know who does that…….or wants to, for that matter? This was truly a labor of love.

She judged her success by the smiles on everyone’s faces and there were always plenty of those. This was her day to shine and she did. On Thanksgiving, she was a Star and we all knew it. Every year on this day, she got all the praises, attention, love and affection she so richly deserved.

I was lucky enough to spend 46 Thanksgivings with her. Now that Mom is gone, my great wife, Gail has inherited the holiday and she does a great job of filling Mom’s shoes. Now the holiday has become her night to shine and she does.

I had intended to write a holiday blog about Thanksgiving, more of my usual stuff about gratitude and perspective. Instead you got a story about my amazing mom and incredible wife. You will just have to trust that I do feel extraordinarily thankful and grateful for both of them.

Happy Thanksgiving.

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

Tuesday, November 18, 2008

I am a survivor. We all are survivors.

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

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

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

The simple and seemingly trite answer is that when the world changes, we need to change too. Because of my disability, I already know this to be true. When I gave up driving more than three years ago, I wondered if I would sense a loss of independence. When I had to give up working more than a year ago, I worried about how we would make ends meet. As my disease progresses, I wonder what the future will be like. What I have learned and know is that with whatever challenge comes my way, it will be dealt with. I will make the necessary changes and adjustments in order to get by. I will survive this ‘change’, because survival is what we do. It is a most basic human instinct.

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

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

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

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

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

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

Sunday, November 9, 2008


“Use it or lose it.” This statement applies to me in a lot of different ways.

Living with a disease (multiple sclerosis, for those of you who don’t know) affects almost everything I do, every minute of everyday. What it has also done is make me appreciate all that I do enjoy and take nothing for granted.

My health. I used to be a jogger. I jogged a 5K almost daily for years. Then I got busier and busier at work, took less and less time to jog, until I had taken jogging completely out of my schedule. Now I don’t walk so good. Would I walk better today if I had kept up the jogging? Maybe. Who knows? What I do know is that what walking ability I do have, won’t be taken for granted. I exercise my legs almost daily to insure that I preserve what ability I have for as long and as well as I can. In other words, I use it, so I won’t lose it.

My relationships. I have been married to the sweetest and kindest women on the planet for over 28 years. From the moment I was diagnosed with MS, I have been grateful that I have her to accompany me on this journey. I know that my life is easier, better and fuller because I have her by my side. For the most part, we have always had a good relationship. Yet it was easy for me to take her sweetness and kindness for granted. I spent a lot of years not fully acknowledging, or acknowledging her for the difference she makes in my life. Now I let her know it everyday and even with the challenges we face, our relationship is better than it ever has been.

My money. For many years I made a good living. Today I am not able to work. I now get federal disability and have a private disability income policy. I earn less than I used to. But, I sure am grateful for the income we do have coming in. For many of us who were in the mortgage industry, it was easy to take for granted the kind of income we enjoyed. Now with our current financial crisis, we realize just how good we had it for those many years. Now that I do not have the ability to earn income at all, I am extremely grateful for the income I do have.

Gratitude is the flip side of taking things for granted. “Use it or lose it” means ‘don’t take anything for granted’ and reminds us that the gifts we enjoy (Health, people, money, etc.) may not always be there. By not taking them for granted, we may be able to keep or preserve those gifts for many years to come. It also allows us to be grateful for those gifts while we have them and not postpone our gratitude until they are gone.

I have learned that my happiness is directly related to my ability to experience gratitude. The gratitude I experience seems to be directly related to how much or little I take for granted. My disability has helped me learn not to take things for granted. It has also provided me with the opportunity to be grateful for so much more than before and in ways that I never could have imagined.

“Use it or lose it.” Knowing that helps me to wake up happy everyday.

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

Wednesday, November 5, 2008


I am changing the way I celebrate my birthday. I hope you will join me.

My birthday is the time for me to celebrate my life. My life is filled with scores of amazing people who make a difference to me. It is the time for me to acknowledge everyone who makes my life “My Life.” If there are any cards or presents to be given, they will be given by me to those who matter most. It is now my one and only day a year that I celebrate birthdays – MINE. It is my day to celebrate you.

Instead of several times a year having to worry about whose birthday is remembered, sending cards and buying gifts, I do all of that just once a year. Think how nice it would be if on our birthday we all gave to those who matter most to us. That somehow seems incredibly appropriate.

If I make a difference to ten or twenty people, then instead of my getting cards and gifts from them once a year, I am getting acknowledged by them all year long, throughout the year on their birthday. The people closest to me are calling me on their birthday to tell me that I make a difference in their lives. My birthday is spent calling them to say "you make a difference in my life."

Hallmark won’t like it. Retailers and bakeries may not like it either. If I do buy presents for people, than my birthday may become more expensive. But it is only once a year. I better start saving now for next year.

If you are reading this, than you make a difference in my life and thank you. In honor of you and to celebrate my birthday, I have made a donation to the National MS Society.

Not getting any cards on your birthday? Good. It will be easy for you to get started. Just start making a difference to someone today.

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