Living with Multiple Sclerosis, and Poems About Doing So

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.  The medicines I take to modify nasty symptoms of MS are also important.

And I write–often of MS.  Survivors in the Garden, my book of poems published in 2012, mostly concerns my life with MS.  Below are some of the poems from the book.  I’ll be posting new MS poems also.

The following essay about writing and MS was published in the Delaware Valley MS Connection Newsletter, Winter, 2013, and contains some of the information above.  I was the “Face of MS” for the issue.    This essay is on page 26.
See:

file:///Users/marie/Desktop/Newsletters%20_%20National%20MS%20Society_files/MS%20Connection%202013%20Issue%201.html

“I was diagnosed with relapsing-remitting multiple sclerosis in 1991 at the age of 39.  I was angry, scared, and worried.  What would happen to me? My family? My children?  My job? At first, I coped with the symptoms, but the disease worsened, and I was diagnosed with Secondary Progressive MS in 2004 and three years later, retired from teaching high school English—a job I loved.  I reacted with horror whenever fellow writers and friends suggested that I write about my disability.  Why would I want to hang that shingle on my literary house?  Display my failing, flailing body to the world?  Admit that I was, in fact, disabled?  Better to ‘disembody’ my writing, to mask the lagging leg and its brace, my double vision, spasticity, numbing fatigue, cloudy mind, increased dependency on my husband—to hide MS by never mentioning it.  If I didn’t write about it, then it was not important to the poet—or person—I was.

“I’m 61 now, and often write of MS.  Why did I write Survivors in the Garden?  Because I forgave myself, forgave this disease.  I knew that while poetry could not, would not, bring back my other, ‘whole’ self, this new self—with leg brace, quad cane, walker, scooter—could enable me to write about what all of that means.  Writing was touted as a way to deal with this diagnosis so that maybe I could conquer it, learn to live with it.  But that is not accurate.  I’ve learned that writing poetry about MS and its impact on my life is to face the demands of this disease, to refute or accept those demands, and to bow under or defy their effects.  My poetry often concerns the unpredictability of living with MS, how it inhabits my life, and alters my life.

“If you have been recently diagnosed with MS, read, read, read about it, ask questions, find a neurologist you trust, share with loved ones.  You are not the same person you were before this diagnosis; my best advice is to find out who you are with it.”

© Marie Kane

Following are some of my poems concerning MS.

This Is the Life

So what if gods, fates, genetic
mysteries haven’t been kind?
We all have our crosses and I don’t
believe in the ecumenical notion
that all crosses are equal so no cosmic deal
with God would allow me
to place someone else here.
Hell, I don’t want to be here.

Lying on the bedroom floor after falling,
thirty minutes pass while I
straighten my spastic legs, roll over on my
stomach, hunch knees and carbon fiber
leg brace under my chest, use my husband’s dresser
to pull myself upright, praying
it doesn’t topple.  Sudden realization—
practice acceptance—agree,

concur, assent, swallow whole.  And what if
I choose refusal, opposition,
disagreement, rejection?  Now, here are the important
questions: why didn’t I revere running
when I could?  Adore pain in calves and shins?
Be smitten with knees that creaked?
Why didn’t I worship the dirty kitchen floor
clean it on hands and workable knees

Rock climb or salsa dance?
My disease raises its head and solemnly
asks the same questions and I want to smack this
betrayal of all things manageable—
using an escalator, turning over in sleep,
standing to make spaghetti sauce.
In my scooter, I could trail my leg brace
behind me as a sea anchor,

sail down mall halls, wave at those too slow
to keep up.  “Whee,” I yelp,
halting the contraption to gape at skinny-leg jeans,
red high heels, bikinis,
knowing that before this new life I never
wore them, and wonder why not.
Why ever not.

© Marie Kane

Wordgathering. September, 2011.

 

What Not to Say to Me Now That I Am Crippled

Try not to tell me to take your time when holding the door; if I could lag behind by choice
I would (sluggishness is not an option with MS) and I do appreciate that my sometimes

blind left eye discerns your kind face ignoring my conspicuous left foot drop, and that do    good is your mantra, but refrain from suggesting that my walking will improve if

I comply with these cures: having a hysterectomy, or its opposite—pregnancy, the repeated sting of honeybees, or the sipping of Aloe Vera juice at a bank-account-emptying spa

at Versailles—any of which ought to turn my question mark spine into an exclamation          point. Should I ask for a bathroom never, ever tell me that I can wait. And for the life

of me, when I relate recent successes, don’t cry out “Good for you!” (as if I were five and      had just learned how to tie my shoes)—when I walk, stand, or stay awake more than I

thought I could (“Good for you!”)—drive my car to physical therapy (“Good for you!”)           —shower by myself (“Good for you!”)—publish poetry, a book (“Good for you!”)—

and when you spy me on my motorized scooter, don’t saunter by and claim sotto voce to my husband, “I need that more than she does,” nor should you whisper that your mother,

father, sibling, neighbor died of MS, then tell me that I look Fantastic! Delightful! Splendid! Your flood of words insists that I am a marvel; my doctors say I am doing well, considering.

© Marie Kane

Levin, Lynn and Valerie Fox, eds. Prompts for Poets. Texture Press:  Norman, OK,                         2013