Why I Am What I Am

March is Multiple Sclerosis Awareness Month as proclaimed by the National Multiple Sclerosis Society. Just in case you have missed something I’ve said, not read something I’ve written, or not seen certain pictures of me; let me make you aware that my body doesn’t work.

My wheelchair or scooter is what I need to get around.

Towards the end of August 1996 – I can’t remember the exact date – a doctor told me she suspected I had Multiple Sclerosis. More specialized tests the following month confirmed it. Thinking back, I felt the first symptoms in 1993.

For some reason, antibodies intended to devour germs and bacteria that make us sick, start eating the jelly-like film that protects neurons in our brain and spinal column. Just like an electrical wire, when the insulation is good, electricity zips through the wire at blinding speed. But when the insulation is damaged or removed, the electricity gets interrupted. Thus is the problem with the “wiring” in my brain. The body tries to repair itself by covering the damaged insulation with scar tissue, but that further hampers the body’s “electrical grid.”

The damage messes up the messages from the brain to the muscles. Muscles don’t do what muscles are supposed to do until the brain tells the muscles to do what they’re supposed to do. If the path between the brain and a specific muscle is damaged, the muscle “hears” “mumble, mumble, mumble.” If you do not fully understand what your teacher at school or your boss at work wants you to do, chances are good you’re going to fail at your assignment. Same goes for muscles.

My problems are below my waist and with my left hand, which is a real pisser because I’m left handed. The writing of this entry has already taken four times longer than anything else I’ve written. My sense of feeling in my hand is not as acute as in the past, I can’t control my pinky finger very well (instead of hitting the “A” key, I hit the “Caps Lock” button), and my left hand is weaker. I’m now using my right hand to eat because I can’t hold my food-loaded fork as securely as I like.

From 2010. I have a better scooter now.

My left leg also is worse than my right leg. Both legs feel like they have 20 pound weights hanging on them all the time, but I also can’t pick up my toes on my left foot when I walk, so I’m always stubbing my foot on the ground, or a rock, or a blade of grass. Since my balance isn’t very good, any little thing that hampers my gait causes me to fall down. I use a wheeled walker in and around my home and a wheelchair or motorized scooter everywhere else. I have a device that allows me to depress the accelerator and brake pedals on my van with my hand instead of my feet so I can still drive.

And when by body wants to release liquid or solid wastes, it’s going to do it no matter where I am. Yes, I’ve had plenty of “accidents” and embarrassments. The good side is I can tell you where all the quickly accessible bathrooms and large, full bushes are anywhere in northern Arizona.

There is no cure for MS because everybody with MS is completely different. You and all of our friends could have MS and we would each have different symptoms and severities. Some of us may not even know we have MS. MS is called “A Designer Disease”, which is why a cure-all medicine is still out of reach.

Right now, the various MS drugs on the market just slow down the progression of the disease not stop it. Kind of like a closed but unlocked door. If the door is open, you walk through without hesitation. But if the door is closed, you need to spend two extra seconds to stop, turn the knob, and pull the door open before you continue on. Research has been going on for more than 40 years and progress has been made. A cure will come. I’m not confident it will come during my lifetime. I hope I’m wrong, obviously.

What I am completely sure of is Multiple Sclerosis will not get me down. I have gone through the periods of anger, depression, why me, and worry only to discover that I still have a whole lot to live for. Multiple Sclerosis itself is not a fatal disease. Because of MS I could stumble and fall in front of an oncoming locomotive, so I tend to be careful around train tracks.

I can do a lot of thinks, like Sled Hockey!

I’m still breathing. I’m still able to see the blue sky, feel the sun’s warmth on my face, hear the birds chirp, have my dog jump on my lap and lick my chin, read a book, eat a perfectly prepared steak, kiss my sweetheart and tell her “I Love You”. And most people want to help me. Most people ask me if I need or want something, and will get it for me. Most people will hold a door open for me as I approach. Those that don’t have their own issues to deal with. I go places I want to go to, and do the things I want to do. It may take me longer to get there or do something than it will you, but MS is not going to stop me.

You may be thinking “Scott, you have a wonderful attitude.” Attitude is the key to living with Multiple Sclerosis. I know people who have had MS for decades who only look at the negative. A couple of years ago, I read about Jeanne Goldy-Sanitate, or “Jersey Jeanne” as she’s become known. Take a couple of minutes to read about all that Jersey Jeanne does and has done at http://www.va.gov/health/NewsFeatures/2013/March/Veteran-with-MS-Adaptive-Sports-Champ.asp#.
Why would I, or anyone of any ability, not want to live like Jersey Jeanne or have the experiences she has?

Living with MS is a challenge, but it will only defeat me if I let it. The victor of this fight will be me.