Saturday, April 24, 2010

Wishful Thinking--or, the Decay of an Intelligent Mind

Hello all,

Albert Einstein once said the definition of insanity is doing the same thing over and over and expecting a different result. I hope he made an exception for MSers.

Maybe a more rational MSer would take Baclofen every day for muscle spasms and simply accept the accompanying weakness and fatigue. But not I. As much as I liked Gumby and Pokey, as much as I indulged in bending those squishy rubber-covered wiry arms and legs to my childish will, I never wanted to BE them. Those clayheads never struggled to blow-dry their hair or to stand upright in a shower for seven minutes without sinking to their knees. They were pampered puppets with a posse that bent to their every whim.

I had hoped that Gumby Syndrome would eventually subside and my body would adjust to Baclofen. Maybe I didn't give it enough time, but for me, two months were time enough and I stopped taking it. I honestly believed that the painful spasms were simply a temporary acute episode and would quiet down. For two weeks, I had no cramping, no aching back, I even strapped on my AFO and took some short walks. My hypothesis seemed valid. Then one cold, rainy day, my legs seized up and my back started screaming obscenities (the lumbar spine is the RUDEST part of the body). After several days, I had to give in and resume my original dosage.

Insanity, or wishful thinking? Believe that I did much soul-searching about this. My conclusion is that I simply cannot wrap my head around the fact that I am disabled. Some part of me thinks that I will wake up some day and this will all be gone, the MS diagnosis was a whopping mistake, my enlarged facet joints will miraculously restore themselves, and I will walk and talk like a normal 52-year-old.

Denial, I have surmised, is a positive survival tool. Ask our MS friend, Dawn, the long-distance runner, who fears that if she stops running, her legs will fail her in a very final, irreversible way. To her mind, running is good ju-ju, the good luck fetish that will keep the evil MS spirits trapped inside a distant mountain.

It could be true. I could wake up some day with a complete remission and Dawn could stay strong as long she keeps running. Like prayer, our irrational rituals might render the screams of the evil spirits only a distant echo.



  1. Good morning Kim,

    It was worth stopping the Baclofen to see what would happen though. At least now you now more than you did before you stopped.

    Of course denial is a part of our therapy! How could anyone think otherwise? We need to be able to fool ourselves, if only for a little while, into believing all will be okay, if not permanently then at least for a while, you know?

    Don't be afraid to try some "start and stop" therapies with you various drugs. Experimentation is the only way we will know if the drugs are working for us and if the side effects are worth it.


  2. Hi, Dave,

    Thanks so much for your very wise, supportive comments. I don't feel quite so idiotic now.

    After completing my little experiment, the jury's still out on Baclofen. I'll probably take 40mg until I get sick of not being able to work in the garden, neglecting my personal hygiene, and letting the dishes pile up because I'm too weak to stand.

    And so, the battle rages on!