My MS Attitude
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My MS Attitude

My MS Attitude

I lost my job, I'm a quadriplegic, and I'm the luckiest man in the world.

by

The value of having the right attitude cannot be overstated. This has been especially important for me because I have suffered multiple sclerosis (MS) for 24 years.

While I'm a quadriplegic now, it wasn't always this way. Rather, it's been a slow progression. I used to swim one kilometer each day, and walk, run or bike many miles at a time. Over the years, this yielded to a stroll around the block. I've now been in a wheelchair for almost 15 years. For 23 years, I taught political science at the college level. When it got to the point where my students were pushing me to class, signing my papers, and so forth, I decided it was time to retire.

More people than I can remember have said, "What a great attitude you have." I don't mention this as a matter of hubris, but simply as a fact. This flattered me, and it caused me to examine my attitude more closely.

What distinguishes how I approach life? Two things: acceptance and reasonable expectations.

Acceptance was hard won. Denial, contrary to the old joke, isn't just a river in Egypt, but a regular item among MS sufferers. This is perfectly normal. After all, none of us wants to acknowledge that we have a chronic illness, a condition which will only get worse. MS is a neurological disorder in which the insulation of the nerves (the myelin sheath) is eaten away. The electrical impulses from the brain that make the muscles "fire" are thus prevented from working. It's like an electrical appliance: If the insulation protecting the cord isn't there, the appliance will short circuit.

For more time than I want to admit, I did everything possible to find any sign that I didn't have MS. Whenever I exhibited some dexterity or strength, I would say, "See, I don't have MS!" I was really proud of this fiction, or more accurately, this self deception.

My fiction came to a crashing halt.

Until the day my feet felt as if they'd suddenly had grown to size 12 and were trying to fit into my size 7 1/2 shoes. Instantly, my fiction came to a crashing halt. Oh no, I said to myself, I really do have MS.

Then came the usual wailing and crying. Why me? Why now? What did I do to deserve this? My wife wasn't about to indulge me in any of this nonsense. She knew just what it was. As a child neurologist and a pediatrician, she'd seen hundreds of children with painful, terminal conditions. "What do you mean, you clown?" she scolded in as loving a way as possible, "You had 30 good years. What about those infants?"

Being diagnosed with MS also caused me to appreciate the Almighty's control of the world. I have no idea why I got MS. No one does. I had to accept it as a part of the grand scheme of the universe that was beyond my comprehension.

Self-Definition

Acceptance is the crucial first step, but it's only the beginning. What to do with it was still the problem. My days of riding a motorcycle sprang to mind. I recalled how a dog would chase me, barking and yelping. I would stop, look it squarely in the eye, and say, "Okay, brilliant. Now that you've got it, what are you going to do with it?" Now that I had MS, how was I going to react to it?

Two alternatives presented themselves: Either I could let MS define me, and pursue my life as a victim (and become an "MS-er," as one of my neurologists described his patients), or I could continue life as normally as possible.

As someone who's always prided himself on being independent, the idea of defining myself by MS, as a victim, grated on me. How could I maintain my self-respect, while allowing this illness to define me? Has there ever been a tombstone with the words, "Here lies a good MS-er?" It held out the prospect of my being despicable as well as miserable, neither of which I wanted.

If MS has taught me anything, it's that God is in control.

Pursuing a life guided by reasonable expectations begins by accepting the reality that we're not in any position to have unreasonable expectations. Doing so would imply that we're in control, and if MS has taught me anything, it's that God is in control.

I'm no longer set on changing the world as I once was, as most young people are. These days I'm occupied writing, corresponding with people all over the world, reading Torah, the news, and being the best husband, father, brother, and friend I can. A voice input computer and the Internet have made the first four things possible.

For the immediate future, I'm intent on writing things that will help people, especially those with MS. In the long term, I'll be satisfied if my children will continue to be a credit to my name, and if people will always remember me for the good things I have done.

Emotional Needs

As alone as each of us is, we must also realize we're dependent on everybody else. As my disabilities grew to the point where I'm now quadriplegic, this has become ever more clear to me. What's true of my physical needs is true of all of us, each in our own way. As the poet John Donne said, "No man is an island unto himself." We each have needs we can't fulfill. Whether it's an emotional or psychological void, we each have something that someone else can help us solve.

Our situation is as good or bad as we choose to make it.

Thinking less about your own condition is a good place to begin. Our natural inclination is to think that our own situation is the worst in the world. As my doctor/wife has pointed out, no problem is small if it's your own.

It is defeatist to mourn over what we used to be able to do, but can't do anymore. First, it denies God's sovereignty. Second, it's an exercise in frustration -- and that's the last thing we need on top of everything else.

Our situation is as good or bad as we choose to make it. If we view our life as miserable, people will treat us accordingly. But if we see our life positively and act that way, that's how people will react. You reap what you sow.

Finally, I would like to share a poem that I wrote:

I'M TIRED

Of being a quadriplegic
Of always having to sit in my wheelchair
Of needing someone to dress me every day
Of needing someone to feed me every day
Of not being able to sign my name
Of not being able to hold the telephone
Of needing someone to push my wheelchair
Of needing someone to toilet me
Of needing my wife to roll me over in bed
Of not being able to hug my wife or children

But I'm also very grateful for
A loving wife
Two beautiful daughters
A wonderfully supportive extended family
Good friends
Being able to write things that people find interesting
A voice input computer that allows me to write
All things considered, I'm the luckiest man in the world.

Published: April 9, 2005


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Visitor Comments: 38

(38) Ellen, March 4, 2013 9:50 PM

M.S. topic of the article by Stephen Baron

I am lost and feel alienated by my MS. This article helped me to find another way of coping with lost of "what defines me". Please more articles.

(37) Roger Goble, August 27, 2012 11:45 PM

Blessin bh MS

I have had MS since 1988and it has really been a blessing to me. It made me slow down and smell the roses and gave me the time to help others. Sure there has been days that i did not feel good and could not do much but is did not give up. I am 71 and still going strong with this mess and i just keep on going. One has to keep a postive attitude and learn to live with it adn not for it.

(36) John, December 6, 2011 3:27 PM

I enjoyed reading what you had to say, the one thing that sticks in my crawl is one of the reasons my wife left me was MS and now I am destined to live alone for the rest of my life. I am happy for you that you still have a wife and she is understanding.

(35) Bryan Payne, October 13, 2007 4:22 AM

Take Care!

Hello Stephen!
I am a 35 year old man with MS.
Been looking for jobs for MS-ers when I came across your site. Having had one episode of quadriplegia, I know what you are talking about. I'm struggling with fatigue but I'm slowly but surely doing all things I want to do through extensive planning & continuous introspection. You are lucky to have made a family life when it was time. Thats the principal trace of your presence in this world.
Take care!
Bryan

(34) David Akers, August 21, 2007 5:09 PM

I am proud of you, my wife has MS and every day it is a struggle for her. I wish that I could understand more. I am not in her shoes, I am only looking from the outside. Its ok because this is what I signed on for. I love her but she just does not understand. Maybe one day she will get better.

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