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.  It is important to bear in mind that all newsletters and journals are archived on our web site.  Should someone do an internet search of your name, your article is likely to be identified in their search results.  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.

Normal
Rob Pall

Normal ... what a simple word!  This is a word I took for granted until one week past my 50th birthday.  What did normal mean to me?  Normal meant being like everyone else; it was being able to run, walk, exercise, climb up stairs, play sports; basically, being able to do everything that “normal” people do without giving it a thought.  I guess I figured, as I got older, I would slow down a little; maybe replace basketball with golf.  Perhaps I would have to exercise a little longer to stay in shape.  No big deal … this was “normal.” Sure, like all normal people, I would get sick from time to time and maybe break a bone or two, but I always knew that I would get better.  And until one week after my 50th birthday, that was just how life was … normal.

Now, let us go back 11 or so years where in a period of several hours, I went from “normal” to cripple.  In a few hours, I had zero feeling from my waist down.  That can’t be possible.  I had played ball all weekend.  There had to be a simple answer; maybe a pinched nerve or something like that.  The idea that I would never be normal again never crossed my mind.  I was sure it would be just a matter of time until I was all better … and “normal again.”  Even after three MRI’s and two lumbar punctures, I was certain that Dr. House would figure out the problem, give me some medicine and I would be all better.  I would be normal again … just like everybody else I knew.

Three weeks after being crippled from the waist down, I was told what I have … Transverse Myelitis.  What the heck is that?  I never heard the words before and had no idea of their meaning.  The top neurologist at New York City Hospital explained it to me.  He said he was sure I would eventually walk again, but he could not say for sure what assistance I would need.  Perhaps a walker (how embarrassing), maybe a quad cane (better but not great) and if I was lucky, perhaps, I could graduate to a straight cane (better but not normal).

After spending three weeks in the hospital, I was transferred to the Kessler Rehabilitation facility in West Orange, New Jersey (the same place where Christopher Reeve did his  rehab). Slowly, over a period of three months, I started getting a little better.  I went from a walker to a quad cane to, upon leaving the rehab center, a straight cane.  I was surely getting better.  I would prove all of the doctors wrong.  Oh, just one little side note.  While it was true that I was learning to walk better, there also came some small side effects.  When I first came down with TM, I had no feeling and, therefore, I had no pain or discomfort.  But, as some feeling came back, these feelings were so so bad.  Where previously I felt nothing, now one of my legs was pins and needles and numb (how is that possible?)  Whereas my other leg was numb with excessive banding (tightness) which caused me to walk with a “stiff leg.”  But at least I was walking and it seemed that I was getting better everyday.  Soon I would be all better … I would be normal.

The improvement was constant for the first six months.  Then, it continued to a lesser extent over the next six months.  Then, I just stopped improving.  How can this be?  I know, I just have to work harder at getting better; just keep exercising harder and longer.  I was so determined to prove the medical profession wrong!  But it turned out that they were right, and I was wrong.  I hit a plateau where all I could accomplish was abnormal fatigue.  I was not getting better and worse yet, I probably never would!  However, I would keep all of the pain and discomforts probably for the rest of my life!

Now, for most people, walking with a limp and being in weird discomfort 24/7 would be bad enough, but not for me.  For me, not being “normal” was the worst part of the condition. I did not want people to see me as crippled and feel sorry for me.  So, I did my best to look normal; even though this hurt and fatigued me more.  As far as my friends and family were concerned, I had made such great strides in getting better.  They could not see the unrelenting pain and discomfort that never went away.  But I guess I was happy that they still thought of me as normal.  After all, is that not what I wanted to act and be treated as - a normal person - and not someone to be pitied?

I don’t know! I drive 40 miles each way to work in New York traffic. I work an eight to ten hour day and yet when I get home, my wife still doesn’t understand why I am so tired. Just a couch potato! I suppose she just wants me to be normal. I know she tries to understand how I am and what my limitations are, but unless you walk in my shoes, how can one truly understand.

That is probably the main reason I have started the New Jersey Transverse Myelitis Support Group. We had our first meeting in the spring and I was amazed at how many of the attendees had never before met anyone else suffering from TM.  It was both enlightening and emotional to be with other people who truly understood what I was saying and what they were saying. I was also amazed by how normal most of them looked. Until they started discussing the horrors in their lives, they looked and acted perfectly normal.  In some cases, just from outward impressions, I was jealous; until they spoke, and in no uncertain terms, convinced me they were as bad, if not worse, than me.
           
Okay … I have come to see being “normal” somewhat differently.  The people I have come into contact with in the TM community are probably more normal than most.  We are a people who struggle with life, yet embrace it.  Most of us do not let our condition define our lives.  Instead, we value the little things that normal people take for granted as wonderful gifts.
           
Maybe, just maybe, being “normal” is overrated!
 
Rob Pall
New Jersey Support Group