I have posted this before. It was my way to put on paper what I could not put
into words.
NORMAL
Normal….what a simple word! This is a word Itook for granted until
one week past my 50th birthday. What didnormal 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
dowithout giving it a thought. I guess I figured as I got older I would slow
downa little…maybe replace basketball with golf. Perhaps I would have to
exercise alittle longer to stay in shape…no big deal…this was “normal”. Sure
like allnormal people I would get sick from time to time and maybe break a bone
ortwo….but I always knew that I would get better…and until one week after my
50thbirthday that was just how life was…normal.
Now let us go back 11 or so yearswhere in a period of several hours
I went from “normal” to cripple. In a fewhours I had zero feeling from my waist
down….that can’t be possible…I hadplayed ball all weekend…there had to be a
simple answer.Maybe a pinched nerve or something like that…..the idea that I
would never benormal again never crossed my mind…I was sure it would be just a
matter of timeuntil I was all better…and “normal again “. Even after 3 MRI’s
and 2 LumbarPunctures I was certain that Dr. House would figure out the
problem, give mesome medicine and I would be all better…I would be normal
again…just likeeverybody else I knew.
Three weeks after being crippledfrom the waist down I was told what
I have…..Transverse Myelitis….what the heckis that…I never heard the words
before and had no idea of their meaning. TheNeurologist at the top New York
Cityhospital explained it to me…he said he was sure I would eventually
walkagain…but he could not say for sure what assistance I would need. Perhaps
awalker (how embarrassing), maybe a quad cane (better but not great) and if
Iwas lucky perhaps I could graduate to a straight cane (better but not normal)
After spending 3 weeks in thehospital I was transferred to the
Kessler Rehabilitation facility in West Orange, New Jersey (same place
Christopher Reeves rehabbed in).Slowly over a period of 3 months I started
getting a little better…I went froma walker to a quad cane to upon leaving the
rehab center a straight cane….I wassurely getting better. I would prove all of
the doctors wrong…..oh just onelittle side note…while it was true that I was
learning to walk better therealso came some small side effects. When I first
came down with TM I had nofeeling and therefore I had no pain or
discomfort….but…as some feeling cameback these feelings were so so bad. Where
previously I felt nothing…now one ofmy legs was pins and needles and numb (how
is that possible?)…whereas my otherleg 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 bettereveryday…soon I would be all
better…I would be normal. The improvement wasconstant for the first 6
months…then it continued to a lesser extent over thenext 6 months….then I just
stopped improving. How can this be? I know…I justhave to work harder at getting
better…just keep exercising harder and longer…Iwas so determined to prove the
medical profession wrong! But it turned out thatthey were right and I was
wrong…I hit a plateau where all I could accomplishwas abnormal fatigue…I was
not getting better and worse yet I probably neverwould! However I would keep
all of the pain and discomforts probably for therest 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 menot being “normal”
was the worst part of the condition. I did not want peopleto see me as crippled
and feel sorry for me so I did my best to looknormal…even though this hurt and
fatigued me more. As far as my friends andfamily were concerned I had made such
great strides in getting better….theycould not see the unrelenting pain and
discomfort that never went away…but Iguess I was happy that they still thought
of me as normal…after all is that notwhat I wanted to act and be treated as
normal people and not someone to bepitied?
I don’t know! I drive 40 miles eachway to work in New Yorktraffic.
Work an 8-10 hour day and yet when I get home my wife still doesn’tunderstand
why I am so tired. Just a couch potato! I suppose she just wants meto be
normal. I know she tries to understand how I am and what my limitationsare …but
unless you walk in my shoes how can one truly understand.
That is probably the main reason Ihave started the New
JerseyTransverse Myelitis support group. We had our first meeting in the spring
and Iwas amazed at how many of the attendees had never before met anyone
elsesuffering from TM. It was both enlightening and emotional to be with
otherpeople who truly understood what I was saying and they were saying. I was
alsoamazed by how normal most of them looked. Until they started discussing
thehorrors in their lives they looked and acted perfectly normal…in some
casesjust from outward impressions I was jealous. Until they spoke and in
nouncertain terms convinced me they were as bad if not worse than me.
Ok…after never ending story I havecome to see being “normal”
somewhat differently. The people I have come intocontact in the TM community
are probably more normal than most….we are a peoplewho struggle with life yet
embrace it. Most of us do not let our conditiondefine our lives. Instead we
value the little things that normal people takefor granted as wonderful gifts.
Maybe just maybe being “normal” isoverrated!
Rob in New Jersey
-----Original Message-----
From: Regina Rummel <[email protected]>
To: tmic-list <[email protected]>
Sent: Thu, Jan 26, 2012 1:19 pm
Subject: [TMIC] Everything is relative
Hi everybody,
I visited a friend who had surgery Monday on her hammertoes and bunions (both
feet).
She told me that she has no patience to wait before she recovers, drives again,
and gets to wear her designer shoes. The waiting is driving her nuts, she said.
In response, I said "Susan, just think that you'll soon have perfect walking
feet and go on with your life as usual, while I'll never be well and back to
normal".
Back home in checking my email, I saw a teenager paralyzed in a hospital bed,
sadly struck with TM as such a young age. I said to myself, my lesion is low,
I am so lucky.
Everything is relative.
R in Marin County
