Imagine waking up one day and realizing that your life, every aspect of it, is forever changed. That is what happened to me the moment the doctor said “You have MS.” Actually, by the time he told us (Us being my incredible partner and wife, Gail and me) on that Monday morning, we had already concluded that would be the diagnosis. We had the whole weekend to think about it, worry about it and be afraid.
At the moment that we knew what it was, we cried. We held each other and cried. We were afraid because this was a disease we knew nothing about. We only knew enough to know that our future was uncertain. But then again, whose isn’t?
That was on a Saturday. After we cried, after the shock or pain or reality began to sink in, we made the decision that whatever it was, we would learn about it, learn from it and be an example to our children, family and friends. I believe that is exactly what we have done.
When the diagnosis arrived that Monday morning, it was really more of a confirmation of what we already knew. I have MS. Okay. Now what?
Aside from starting to take medicine, at that time a daily injection, life was pretty much the same. I had my routine - work, eat, sleep, occasional exercise - but over time I started having some balance issues and my legs were getting a little wobbly. I started using a cane and everyone felt better after I did. Not too much later, I got a pretty severe staph infection and checked into the hospital for sixteen days. After I came out of the hospital, I started using a walker. That episode has been the most impactful one physically since my diagnosis.
Bla. Bla. Bla. Bla. Bla. If you are not bored yet by these details, know that I am.
My symptoms include the following:
Heat sensitivity (If I get hot or a fever, I can’t move)
My hands get tired quickly from typing, eating, etc.
I use a wheelchair whenever there is more than very little walking to be done.
I have osteoporosis (I take Boniva just like Sally Fields does)
I have severe sleep apnea. (We are now treating that)
I can only sit up at a desk for an hour or two before needing to lie down or use a recliner.
I can only stand for seconds at a time and need a walker to hold on to for that.
I get something called Lehrmittes Syndrome. Sometimes it really hurts. I can only guess that it feels like being tasered. It causes me to use expletives! It is not everyday and it doesn’t last for long….so I can live with it.
There are many other common symptoms that I do not have and for that I am grateful.
What else can I tell you?
I need help and I have learned to ask for it.
I need help throughout the day.
I need help getting my clothes out (I still dress myself).
I need help getting food and drink. I cannot get it on my own.
I fall down. Sometimes twice a week and sometimes twice a day.
My fine motor skills are limited. It takes me an eternity to button a shirt.
That is my disease. What it is not is who I am.
I am a happy man. I wake up feeling happy every day of my life.
I lead an amazing and very active life, filled with family and friends.
My marriage of almost 29 years is better than ever and I love my wife more today than I did on our wedding day. We go places and do the things that others only dream of.
Together we participate in anything and everything we can. We are active with our chapter of the MS Society. We have one of the biggest teams at the Greater LA Walk MS. We are active with other charities and truly feel that we make a difference in the world. Our lives are full, rich and so very worth living.
Together, we are absolutely who we want to be in the world around us.
Do I have challenges? Yes. Some days are clearly more difficult than others. Are we having a hard time making ends meet? You betcha! But all of that has nothing to do with who we are. Our circumstances do not determine our happiness.
Sometimes people say that they feel sorry for me because of all that I miss out on. I don’t feel that way at all. In fact, I wish that everybody could be me for just a day to experience the happiness and joy that I experience.
There is one that thing I write about and talk about often and that is gratitude. My MS has taught me more about gratitude than I ever could have learned from a life without incident. It is that knowledge and experience of gratitude that enables me to feel the way I do and wake up happy everyday of my life.
I suppose that I do have a disability. But that disability has caused me to have some super-abilities too.
Participate. Make a difference. Live a life that matters.