I'm no hero, I just have MS

On April 28, 2002, the Larry King Live show was on Multiple Sclerosis (MS). From Mr. King's intro:

"Tonight, four high-profile people fighting one still-mysterious disease. TV talk show host, author, activist Montel Williams, who has multiple sclerosis. My good friend and lawyer Mark Barondess. He has MS too, but he hasn't let it slow him down. Alan Osmond, one of the famed singing Osmond Brothers, another MS patient. And the amazing Nancy Davis. She also has multiple sclerosis. Her foundation is behind the famed Race to Erase MS.”

As I watched the show, my initial interest gave way to a vague discomfort. I became more and more troubled at what I was hearing and seeing and finally turned away in disgust.

Now don't get me wrong. I like Larry King. I watch his show a lot. And I'm grateful that the public is being made more aware of MS and how widespread it is. But are TV Talk Show Host Montel Williams, Alan Osmond, the “amazing” Nancy Davis, or a practicing lawyer who is still able to not “let MS slow him down” really representative of people with MS?

What about those of us who have MS and are not remarkably “stout and courageous”? Frankly, if I hear one more “hero” story I think I'll scream. I'm not a hero. My wife, Karen, who is equally affected by my MS, is not a hero. We are everyday people, with everyday feelings, and everyday fears.

The “snap shot” testimonies of Larry King's guests were just that, “snap shots”, and remarkably tarnish-free snapshots. But my life and my MS isn't a snapshot, and can't be understood that way. My MS is progressing. My wife and I struggle to keep up with my limitations, which change in the way they affect us on almost a weekly basis.

And we aren't the only ones.

Karen recently went on a MSers' caregiver's retreat. She met caregivers whose partners’ MS is similar to mine. Not one of their stories sounded anything like Larry King's guests' stories. They talked about wheelchairs and scooters, marks on the walls, making changes to their homes only to have their partners worsen before they could use the improvements.

And they talked about death.

Karen met a woman whose husband died a couple of weeks before the retreat. He had been diagnosed with MS only two years before. MS had diminished the quality of his life to the point where he was in hospital when he died.

You know what he died of?

He choked to death. He had had difficulties swallowing (a condition caused by MS and one with which I am very familiar). So though he didn't technically die from MS, he died from complications arising from his MS. (Where were the nurses?)

I think the public should know that.

And it should know that not only are there people with MS like Larry King's guests – strong and brave, good-looking and well off – but there are also those of us who don't have the time or the energy to be strong, brave, or good-looking. And we certainly are not well off! We spend all our time and resources just trying to manage our symptoms.

The public needs to know that MS is different from person to person, that for a person with MS, the symptoms often change from day to day, and even from hour to hour. Sometimes I can think clearly, sometimes I can't. Sometimes I know where I'm going, sometimes I forget and get lost. I used to alternate between my cane and my walker. Later, I alternated between my walker and a wheel chair. Now I use nothing but my wheel chair. I don't often go out. Most often I sit at home. It's easier, and safer, that way.

You see for me, MS is a debilitating and progressive disease. I don't jog everyday, climb mountains, leap tall buildings or wrestle alligators.

So there was little in Larry King's guests that I could relate to. They were so confident, so polished, so professional, and so attractive.

I, on the other hand, have trouble peeing. The high point of my day is a bowel movement.

I have trouble swallowing, often choking. My left side feels sore and numb at the same time. My left arm, left leg, and the left side of my face and mouth are not “working” very well. My writing is almost illegible. Walking has becoming much more difficult. My vision is worse. My head aches almost constantly. I have a numbness or a fog in the center of my forehead. I can't remember to do things. I can't find the right word. I can't concentrate.

Yada, yada, yada. Nothing anyone who knows MS and who didn't learn about it on Larry King Live hasn't heard before.

You see, neither my wife nor I were on the Larry King show. Neither of us is from a famous family and neither of us has our own TV show.

I just have MS. And bladder issues don't make for good ratings.