My take on having MS

I have Secondary Progressive Multiple Sclerosis.  I was first diagnosed with Relapsing Remitting MS in 1991, the kind whose symptoms come and go.   Optic Neuritis was my first clue that something was wrong; I lost partial sight in my left eye.  (This is a first  symptom for many with MS.)   Thinking that my eyes were exhausted from grading piles of essays, (I was a High School English teacher), I finally went to my optometrist, who sent me to an ophthalmologist, who blithely said, after many x-rays and tests, “Well, you either have a brain tumor or Multiple Sclerosis.”  After seeing a childhood friend’s mother suffer greatly with MS, I almost hoped it was a brain tumor.

He sent me to a neurologist who ordered three different MRIs, a spinal tap, urinalysis, resistance tests for my arms and legs, and a host of blood tests.  The capsule of the MRI terrified me; no amount of head phones can ever block the pounding of the magnetic imaging.  And, if I never have another spinal tap it will be too soon; the resultant body-slamming three-day headache continues to give me nightmares.  Results came back –and yes, it was determined that I had MS.   After days of intravenous steroids in the hospital, then steroid pills, my vision came back to normal; lingering weakness in my left arm and leg rarely surfaced.  I began taking vitamin D and calcium and resumed my beloved teaching career, graduate school, raising my three terrific children, enjoying running, and, basically, lived a normal life.

Off and on I had some effects from MS, but nothing life-altering.  Oh, well, there was tripping and falling, once resulting in a broken rib and the other in a fall that bloodied my face so badly I went to school wearing a sign that read, “You should see the other guy.”  I stopped seeing my first neurologist–the over-an-hour-commute to his office was time-consuming–and went to see a neurologist with a near-by office.  He did not press me to have disease modifying injections, which had recently been approved by the FDA.  I told him I did not like the side-effects, and my distaste for needles was over-whelming.  My symptoms were mostly minor and infrequent, although when they did occur, my life was seriously affected.

I was hiding from the fact that this disease could take a nasty turn, thinking it won’t happen to me.  After all, I was active (I had been a track coach!), loved raising my children, enjoyed my teaching career and my writing–some of my poetry was being published– and I handed flare-ups well.  So what do you know, in 2004, thirteen years after I had been diagnosed, my left leg decided to stop working on one of my two-mile walks on the Delaware Canal.   I chalked it up to my left hip replacement in 1999, but soon was at my former neurologist’s office, agreeing to more MRIs, injections of Copaxone, and a host of other treatments for MS symptoms.  I also had a new diagnosis–Secondary Progressive MS.

In 2007, I retired from teaching after twenty-eight years.  MS fatigue, hand and leg weakness, and double vision difficulties are not compatible with teaching fifteen to eighteen year old students the gifts of F. Scott Fitzgerald, Arthur Miller, or Emily Dickinson–or the best way to craft a poem or essay.  Although I loved doing just that,
the wisest choice for me was to retire.

So, I live with MS.  Not very well at times, but I do the best I can.  All of my ‘helpers’ are vital.  My husband, Steve, most of all.  My quad cane, walker, and motorized scooter for long distances, are necessary for me to partake of the world.  My friends are wonderful in their understanding.  My children support me in any way they can.  The medicines I take to modify nasty symptoms of MS are also important.  What is most important is that I keep on with my life–writing, publishing, entertaining, cooking, reading, going to poetry readings and workshops, give readings when asked, and watching birds against the bright  blue out our sun room windows.

And I write–often of MS.  Survivors in the Garden, my book of poems published in 2012, mostly concerns my life with MS.  On other pages on this website, you’ll find some of my poems on MS.  I’ll be posting newer ones also.

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3 Responses to My take on having MS

  1. suej says:

    I’m with you on living with MS, not very well at times, but “What is most important is that I keep on with my life”…. and that is the key. Like you, I retired (way too early) because of MS fatigue and visual issues. Of course our lives are different now, but I’m determined to keep the grey matter going in some way! People have said to me ‘don’t you think “why me”?’ And my answer is “why not”? We all have different problems… I’m just off to have a wander round your blog… 🙂

    • mariered says:

      Thanks, Sue! Yes, “Why not me?” is the perfect response. Keeping “the gray matter going” is vital–luckily I can still write, although my hands are beginning to be affected. I can use voice to type if I have to, although that is my least fav. way to write. I’ll check to see what you are up to!

      • suej says:

        I seem to be posting mostly photographic bits at present, I have some poems that I will one day post, one of which was written soon after my diagnosis, and I won an award locally.

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