In Their Own Words

In each issue of the Journal, we will bring you a column that presents the experiences of our members.  Their stories are presented In Their Own Words by way of letters they have sent us.  We are most appreciative of their willingness to share their very personal stories.  It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves.  It is our hope that the stories will help us all realize that we are not alone.  We are particularly grateful to those people with Acute Disseminated Encephalomyelitis who wrote articles for this publication of the Journal.  You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.  Please be sure to clearly state that The Transverse Myelitis Association has your permission to publish your article.

Strong and Proud

She is probably one of the most beautiful women you have ever seen in your life.  Her short, brownish-red hair, neatly shaped around her oval face.  Her long eyelashes stand out as she stares at me with her kind blue eyes from the wheelchair that has kept her for five years now.  She is a great person, a woman in her mid forties, and she is my Mom.

We sat across from each other, talking slightly over the sound of the television.  I told her that I needed to interview her for an English class and mentioned that of all people, she would be of most interest to me.  We began talking, and took a look a few years back.  I asked her if she felt comfortable talking about the subject and without any hesitation she answered, “yes.”  We went on and I began asking some questions. 

“How and when did you become paralyzed?” She began slowly, as she wasn’t sure of where to start.  Just as I was about to tell her that we can skip that particular question, she began to give me an answer.  “You know, you were still in junior high, in eighth grade in fact.” As I began remembering, she went on, “Transverse Myelitis is the name of the disease, or so they say.  It has been holding me in this stupid chair for five years now.”  I was somewhat shocked as to how calm she was on such an intense subject.  As time went on, I began asking more background questions.  I asked how it felt to suddenly be taken off your feet for the first time in over forty years.  She told me that at first it took her by total surprise and that she felt as if it would pass in a week or so.  She explained that as a year went by and then another, it became even more of a reality than it had been in the beginning. 

I remember her being in control.  Running to the grocery store right after work, cleaning the house, doing the laundry, after cooking a wonderful meal.  Why do bad things happen to good people I asked her, and she replied simply with this, “its destiny and this is what G-d had set out for me.”
 
While we went through the question-answer process, I learned a few things that I had yet to know about my own mother.  Ever since being paralyzed in 1996, she went through a complete change.  She began to see life from a different perspective.  She was, in a way, given a chance to see how good the things in life really are, and how shocking it is to lose them.  Right now it is February of the year 2001, and she has somewhat adapted to the idea that what you want doesn’t necessarily come to you that very second.  I asked her if she had seen improvements since the day that she became paralyzed, and she gave me a definite yes.  She even showed me that she could take a few steps with a walker; something that was virtually impossible a few years back. 

A disease of this magnitude can take years to recover from, and even then there is no guarantee that my mother will be back to 100% as she was before.  My only hope at this point in time is that stem cell research, the only probable cure for this sort of health issue, will be able to bring answers and hope to my mother and the millions suffering around the world.  As I look at her, I idolize her.  My mother is one of the most incredible people I have and will ever meet in my entire life.  She has been handed a misfortune, but still somehow remains strong and proud.

Max Glikman
February 20, 2001