"Caution - Brain Derailed:
Detour Ahead"
by
Shirley C. Towne
"...on little cat feet"? With a tap on the shoulder and "Excuse me. May I introduce you to...?" Oh, no. Not a gentle nudge but rather a kick in the gut, a 2x4 to the knees, a soapy rag scrubbing away four plus decades of memories, knowledge, and abilities. Why can't I remember how to drive the car anymore? Why can't I finish out the school year? Why can't I find the clinic where my doctor for the past 15 years has practiced? He hasn't moved to another office. Why can't I find him? Have I eaten, bathed, changed my clothes? Why do my husband and son look at me with fear and concern in their eyes? Why does a friend drive 75 miles to bring me lunch and insist that I eat all of it? Did I? Why don't I remember any of her other visits?
Why? Because there are scars on my brain and spinal cord, not from an accident, but from Multiple Sclerosis. From what? You know, MS, the disease that puts people, mostly women, in wheelchairs. But I was demolishing opponents on the tennis court two weeks before this attack. My fingers didn't tingle. I had no trouble with my vision.
I wasn't falling down.
No one in my family has had MS.
I followed all the rules – no speeding tickets, always stopped at the train tracks when the lights were flashing, bills paid on time, healthy diet, kind, helpful, well educated, happily married to the same man for 26 years, two wonderful sons . . .
How could MS come crashing so suddenly into my life? Why a loss of memory as the first clue? My neurologist said my loss of memory is very uncommon for MS patients. Many do have some cognitive dysfunction but not the complete loss I experienced. Maybe epilepsy?
A whack on each elbow!!
But I am writing this. Three weeks after the derailment, Prednisone straightened the tracks; family and friends picked the cars up and set them back on the tracks. A loving husband taught me to drive again so that I could attend a graduate class at a nearby university that summer (I got an A!). Two of the ABC drugs kept me mobile and aware the first seven years after my diagnosis then Novantrone tried its best for the next three. Although there are currently no drugs available to slow the advance of my progressive MS, a variety of drugs keep me moving although
at a much slower pace.
Are there bad days? You bet! The two sets of tennis on a Saturday afternoon are long gone. A walk to the pond with the dog ended up with me lying flat on my back in the field wondering how I had gotten there. But Mario was there licking my hand, looking at me as if to say, "Hey what are you doing? This is not nap time. Get up!!
I want to go to the pond and swim!"
I had landed on the grass so no damage done. Now the dog is gone; my cat doesn't have
any desire to go to the pond for a swim.
But there are short walks on paved surfaces with MaviS, my walker. I decided several years ago that I'd rather have my students ask me "What do you need that thing for?" than "Are you hurt? Can I help you get up?" And there are rides on the stationary bike while watching President Bartlet and his team try to decide if the people will re-elect him to the presidency after learning that he has MS.
Do I wish I didn't have MS? Of course. I hate the worry I am causing members of my family – "How'd you get that black and blue on your back, Mom?" "Are you OK, Shirley? Let me help you up. You hit awful hard." I don't like having to tell people who look at me suspiciously that I'm not drunk. I'm staggering because I have Multiple Sclerosis and the legs aren't working too well today.
I have learned to smile while I'm saying that and also use the opportunity to provide some information about MS to those who don't know about this disease. I've read many articles about the positive value of laughter so have made humor an important part of my life. I've even had my husband guffawing at some remark I've made (but not while I'm beating him at Jeopardy!)
which rarely happened in the past.
The kids at school would say, "Mrs. Towne,
you're not funny!" when I tried to make a joke,
but they were smiling as they said it.
I did have to retire from my position as a high school librarian, a job I loved for 29 years. MS made it impossible for me to escort my students out of the building quickly during a fire drill or bomb threat – yes, I could have used a wheelchair – or to get upstairs to eat lunch with other teachers – yes, I could have used the elevator as I am not claustrophobic so would not have panicked like the teacher who was trapped for two hours when the elevator got stuck between floors – or to remember my next sentence when giving a book talk
with the notes right in front of me.
No, a wheelchair or elevator could not help get the brain back on track then. I also wanted to leave while people were still able to think of me with a smile, many rolling their eyes as they were thinking, "She isn't funny, is she?" as I made another lame joke or comment but nonetheless smiling as
they thought about my attempt.
So no more getting up at 5:00 a.m.! Now what to do with all my free time? My original journey to Retirement had included six more years of teaching. So confident was I of reaching my destination by the route I had chosen that I had included no plans in case of an emergency that forced a detour.
So, here I am, traveling on strange roads with
no clear destination in sight. Lao-tzu said
"A good traveler has no fixed plans and is not
intent on arriving." It's all in the journey. So maybe I am on the right track. I helped the VT MS Society organize its library so will look for other places to share my talents which will not
include stints as a stand-up comedienne
(I can see your eyes rolling!)
I've taken online writing classes that assure me that
no matter how uneventful my life has been, I do
have a story to tell that others would like to read.
I spend some time every day learning more about
the intruder that has reshaped our lives since 1994.
The National MS Society website and my local MS
chapter have given me accurate information
about many aspects of this disease. I've met some
wonderful people on the MSWorld message board
who have given me much needed support
during the bad times.
And it is encouraging that programs like the West Wing, Law and Order, and Larry King Live are bringing attention to this disease which may result in more funding for research to find a cure.
Best of all I've met some really wonderful people
who are willing to donate their time and energy
to participate in the MS Walk and Bike Tour to
raise funds for research. So although there are
difficult days, I remain optimistic and look forward
to the day when no more brains are derailed
on the MS Line!
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