The Montel/Oprah M.S. Misfire

Patient Expert

I admit it -- I don't watch Oprah. But so many people told me about Montel Williams' March 17 appearance on her show that I had to get my hands on a copy. I heard it was an extremely powerful piece about multiple sclerosis.

Immediately, I was startled by Montel's outpouring of raw emotion as he spoke of his MS progression. Repeatedly breaking down in tears, the former marine and all-around tough guy described his road to diagnosis, battle with depression, suicide attempt, and ** chronic pain**. At times I completely forgot that I live with the same disease, so drawn in was I by his circumstances and brutal honesty.

Weeks later, still haunted by the segment, I decided to write about it. My intention was to point out the most unusual and intense way in which MS was portrayed -- highlighting one man's reality with this disease.

I also wanted to point out a few factual errors. Oprah didn't seem to have much knowledge about MS, nor did she take charge of the interview. The doctor who appeared on the same show made some odd statements that truly demand clarification. A follow-up show with an MS specialist is definitely called for.

But a funny thing happened on my way to writing that article. Searching online for a clip to share, I became completely sidetracked by reading the comments on this topic posted across the blogosphere. (Oprah's site does not offer the clip, but does provide a ** transcript**).

A lot of people who watched were rightly concerned about misinformation and set about to correct errors. Now it's not those errors I want to address, but reaction toward Montel Williams personally. Apparently, many who viewed the Montel/Oprah interview were angry at Montel for his very public display of emotion.

Mr. Williams deals with crushing depression, a common symptom of MS, which lead him to thoughts of suicide and at least one attempt. He says things may have been different if he had been made aware earlier on that depression is a symptom of MS. That doesn't make him an unacceptable role model. It makes him a human being who, despite MS and serious depression, chooses not to hide.

Looking back on his own talk show days, Montel spoke of having to lengthen commercial breaks in order to rest from the constant pain and burning sensation that plagues him 24/7, reaching from his shins to his feet and has now affects his face as well.

He follows a strict regimen of vitamins (lots of them), exercise, and healthy diet. He demonstrated his daily ** injection**, a constant reminder of his condition. "Can't I just forget it one day?" "It" being a disease without an obvious cause or cure, and allowing for little control. "I'm tired of being sick."

Saying "I can't run anymore -- running is gone," he continues to work out every day in order to stay as strong and healthy as possible.

What really hit home for me was his description of how his wife, Tara, "has the ability to get her arm under mine and make me look like I'm holding her and drag me to another place." Those of us with loving care partners understand what that's all about.

There are dark moments, he says. African-American men, as a group, do not fare well with MS. At 52 years old, he considers the average life expectancy of an African-American male, and the slightly shortened lifespan of someone with MS, and sees his remaining years possibly numbering in the single digits.

"I could quit and say that's it. Stay in bed and not get up. Or I can get my butt up every single day, being a contributing member of society, and try to figure out how I deal with it."

Asked his biggest fear when he wakes up in the morning he replies, "not being able to walk." Boy, can I relate.

So what do his critics say?

Well maybe if he didn't work out so much he wouldn't be in pain -- he's supposed to rest... How come he didn't name all the vitamins? He should be sharing that information... How do we know that injection is for MS -- that could be anything... What's the big deal -- if he were diabetic he'd take more than one shot a day... He just feels sorry for himself, it's sickening... He shouldn't be crying like that on TV... Why didn't he talk about marijuana?... All he needs to do is give up diet soda... MS is not life-threatening and he shouldn't be such a whiner... Children die, why should we cry for him?... He's rich and has insurance -- he doesn't know what we go through... He's too negative -- he should be more positive in public... Oprah should have REAL people on her show...

Why DID he say this... Why DIDN'T he say that... real people?

I don't get it. We say it all the time here on Multiple Sclerosis Central. "My MS is not your MS." We understand a basic fact about MS -- that with all we have in common, no two cases are alike. Some people with MS barely register it as a blip on their radar screen; others face devastating disability; and the rest of us live in the million shades of gray in between. It's bad enough that we "look so good" that our symptoms are invisible to the outside world. For us to attack each other for how we appear in public is a mistake.

The man lives with chronic pain and depression. Are we really going to beat him up for admitting that? I would not expect him to feel positive all the time and certainly would not want him to fake it so that we can all feel better. I deeply resent it when other people presume to know my reality better than I do, or tell me how I should feel. And by the way, uncontrollable crying is a (rare) symptom of MS.

There is no one ideal public face to put on MS, no role model that will encompass all there is to this disease. Whether it's the healthiest looking person in the world or the bedridden nursing home patient -- each of us represents the face of MS. Because Montel Williams' MS does not resemble my MS does not mean one of us is wrong.

Your face, my face, Montel's face -- aren't we all the face of MS?