08 January 2010

If MS Is A Gift, Where Do I Go To Return It?

My mom always told me I had a bad attitude.

When I was a kid I never understood what she meant by that, but now I not only see what she was saying, I'm starting to think she may have been right. Particularly around the holidays, so many people seemed to be recounting the blessings conferred by MS, or some other chronic condition. It makes them a better person, brings them closer to God, deepens their appreciation for life, family, whatever. I suspect I should find these essays inspirational and thought-provoking. I find them thought-provoking, all right. They provoke me to wonder, "Are you f%#king nuts?"

I do not see anything good about having MS. Nothing. I do not feel blessed in any way. I do not see it as an opportunity to become a better person. I'm perplexed by the general assumption that, when you have a chronic disease, it's important to maintain a positive attitude. Why is that? Can somebody point me to some real, convincing evidence that positive thinking makes a rat's patoot worth of difference, to anything?

I'm not talking about wallowing in self-pity, here, making yourself and everyone around you miserable. I don't see any point in that, either (although I admit I do it sometimes. I try not to wallow, but sometimes I put my feet in and swish them around a little). But isn't it positive enough to take one day at a time, enjoy what you can, appreciate the good stuff, and just slog through the rest?

Projecting a relentlessly positive attitude is hard work. I know. I do it all the time. Most people who ask me how I am don't really want to know, not really. "I'm fine..." I say, "I'm good...", and we talk about something else. I wonder if forcing yourself to be artificially positive might even have a negative effect. I find it very stressful to pretend I'm OK when I'm not.

Inspirational affirmations make me itch. "Life isn't about waiting for the storm to pass; it's about learning to dance in the rain." "When life hands out lemons, squeeze out a smile."

"I have MS, MS does not have me."

I admit I'm being deliberately obtuse, here. I realize that the people who say this probably just mean they are determined to maintain a life outside of MS. They will not let the disease define who they are. That's all good. I try to do it myself. But every time I see this, what I hear is "If I fight hard enough, I can beat MS. I can keep it from changing my life."

Maybe you can. I hope you do. But I couldn't. MS has totally kicked my sorry butt. Maybe I should have fought harder. Maybe I wasn't positive enough.

I'm pretty sure MS has not made me a better person. When I finally had to retire from work, one of my coworkers told me, "You've been an inspiration to all of us as we see your courage and grace." It was such a nice thing to say, I only wish it were true. Have you ever noticed that obituaries always talk about fighting a brave battle against disease? I'm afraid mine will have to say I was a pitiful spectacle, a total cringing whining craven coward. I'm not being brave. If there were another option, I would take it. I'm just not aware of any.

I've even had people tell me "You're a survivor." I guess I am. We all are, aren't we? Until we aren't. Then we're dead. To borrow a headline from The Onion, "Despite Best Efforts of US Medical Profession, Death Rate Remains Obstinately High at 100%." Does being a survivor, when the only alternative is being dead, make me a better person? I'm not seeing it.

Maybe it's just my bad attitude.

-- Mme. Crabbypants


  1. Hi Zoomdoggies,
    Please come by my blog and pick up your award.

  2. LOL, excuse me for laughing but I am a naturally happy person. Ka Zing! My neurologist told me once that I was going to be OK because I have such a good positive attitude. All I could think was,are you crazy? You don't know me at all. What I think people see in me is my "whatever" attitude and my sense of humor. I do find MS to be hysterical, seriously, some of the crap it does? Hot is cold, cold is hot, blah blah---it is a cosmic joke. Here is the REALLY crazy part, for the first years I BELIEVED that Dr., yeah, man, it was my "positive attitude!" Now, after 20 years, clearly my attitude had NOTHING TO DO WITH IT. My MS has taken the natural, most common course,PERIOD. Same with cancer, all a positive attitude does is make OTHER PEOPLE feel better about your condition. Ya sure, moping around and self-pity is a downer and I'm sure your body won't dig that, but I hear ya. The better than thou positive/got me God MSers make me sick. Better person? I was a fine person BEFORE MS, thank you very much. I was aware, I was solid, loving, thoughtful and good(damn it!) LOL
    I get the "you're a survivor" too, like you said---WHAT'S THE ALTERNATIVE?? Geez

  3. Oh Zoom,

    So, inspirational sayings only make you itch? Depending on my mood and the context, they make me want to spit nails.

    I can appreciate the upside of working on our attitude. Really, I can. And, I do find many things to be grateful for in spite of being sick. But being grateful for chronic illness, nope.

    I think the relentless need of our society to elevate the status of people with illness is out of hand. It reeks of a discomfort with acknowledging the reality of an unpretty situation. And of course, stories of martyrs are better for fundraising.

    I saw a sign in the grocery store, "All breast cancer survivors are heroes". So just what the heck does that mean? What about those who died? And, those who survived got hero status for early detection, good genes, or what?

    When we say crap like hero, brave, etc., it puts a burden of expectation on those who are sick to be even more positive and perkier than average healthy folks. Now what's up with that?!

    All right Madame Crabbypants - quit pushing my buttons ;)

  4. Only "MS Sucks" is acceptable to Patti. You tell her anything else and you will likely get a tongue lashing in not so lady like language.

    Caregivingly Yours, Patrick

  5. I often tell my wife the only positive thing I've gained from having MS is the many ways I've figured out how to work "bite me" into the conversation.

  6. So well said. It needed to be said. thanks for doing so.

  7. Amen sister! Have been wanting to go "medical"on all who profit from my misfortune in having ms(inept MS specialists, big pharma, the insurance industry and the health no care system.). And please it is not my angrey 'stage' of grief. This sucks- it has ruined what is left of my life.