Hello this is Chris Tatevosian, author, MS suffer and longtime member of Mandy's Maze. As most of us know already Mandy's Maze and MS Central are enlightening, informative and educational sites dealing with multiple sclerosis among other ailments. Mandy's Maze, designed and written by Mandy Crest who like myself has and deals with MS every day. The Maze has so much to offer to all individuals, not just those of us dealing with MS.
Recently I read this article written by Mandy Crest following a recent interview on the Oprah show. I thought that I would add my two cents..... I have added my thoughts in italics to the following superbly written article by Mandy Crest. I hope that you enjoy and please let me know what you think via e-mail at firstname.lastname@example.org or by visiting my web site and signing my guestbook. www.Lifeinterrupted-nolonger.com
The Montel/Oprah M.S. Misfire, March 2009
March 2009 Mandy wrote:
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
As an author and multiple sclerosis suffer who has lived with MS for more than 29 years now, I can truly understand as do most of us with MS , from where Montell's concerns, fears, anxiety and demons stem. It's simply the unpredictable, unexplainable course this disease will take during one's lifetime.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.
As I try to explain to readers in my book, Life Interrupted, It's Not All About Me, those of us suffering from MS, whether afflicted or acting as the caregiver for one who is afflicted with MS or any chronic illness for that matter the future is unpredictable. Especially when dealing with autoimmune diseases like multiple sclerosis. I tell readers, yes the disease is miserable, but it's your decision whether to go through the rest of your life smiling or crying and depressed. It's likely that we will always have the miserable disease whether we're smiling or crying and depressed, so how do you want to spend the rest of your days? It comes down to one of two choices? You can have your MS/chronic illness, basically your misery but you can have that misery and smile and try to make the best of it or you can have that misery and add your emotional misery to it.
Having written my self-help memoir dealing with this specific topic has afforded me the opportunity to slow down and examine my life. The obvious fact is, we have the choice to go through life dealing with whatever trials and tribulations we must with either a smile or a frown. Yes, we have an affliction, but that doesn't mean we should just sit back in a downward spiral plummeting into a state of deep depression that feeds on our own self-pity and feelings of worthlessness. As in my case, this only leads to the development of one's relationship destroying poor me attitude.
Mr. Williams suffers from depression, a side effect of MS and as Mandy states "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. I have chosen not to hide because of my MS. No, I made my life an open book hoping to show others in similar situations that life isn't over and that your life can be great again. Having read my story, you know I'm living proof. Obviously, Mandy has not chosen to hide, but rather help others manage and live wonderfully happy and successful lives all the time living with MS.
I pray that Mr. Williams recognizes that he has the platform that would allow him to reach out and help millions of individuals around the world who are suffering in one way or another. Doing that would only make Montel Williams feel better by again having a purpose in life. Thus allowing Mr. Williams to see the positive influence that he could once again contribute to the world. Of course he first needs to get help and successfully overcomeof his depression. One would think that with his resources he could easily ascertain the best medical attention Why he has not already achieved this task is beyond me.
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.
Hello it's Chris again. Here are my two cents. Having been there myself, I would have to say that Mr. Williams likely gets depressed in this situation as did I, because feelings of low self-esteem and self worth as his wife has to do more and more for him. This is difficult for a guy to accept. We're supposed to be the strong ones, the protectors, heroes and breadwinners, at least that's what we think. This is something we have to just get over, because one's frustration and anger takes a serious toll on one's relationship. I learned that lesson too late, but I'm a better spouse for it today. This is something Montel must quickly realize, otherwise he too could lose his wife.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.
Two more cents, smile: One must remember white, black, turquoise, what ever MS or not, any one of us could be gone tomorrow. Here's a quote from my book "worrying about the future, almost always insurers that the future for which one hopes never happens." More negative actions and feelings like depression, anger, worry and frustration takes a toll on relationships and over time can prove to be too much for one's spouse to bear."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.
My final two cents: Initially the fear of losing the ability to walk is a daunting an haunting concern, but I have found the longer one lives with MS and the more knowledgeable one becomes about MS the more we find that losing the ability to walk while initially devastating does not rank highest on my list of most horrible symptoms of this disease. Every face of MS is unique. We may not have control over our physical losses, however we do have control over our emotional losses. MS can become emotionally crippling, don't you let it.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?
Chris at a book signing event.