I tried sending this with an attachment and it did not go thru...I am
trying it again with a cut and paste and hopefully the group will
receive it!
I have been reading all of the many posts many of which are
heartbreaking. I can only relate to my own personal experiences. First
of all living in a large urban area where access to excellent medical
facilities are in abunbdance helped me. Within 24 hours I was taking
1000 mg per day of prednisone (steroids) which I believe limited the
damage to my spine. After going to numerous Drs, physical therapists and
even chiropractors I came to realize that after passing the one year
mark I would not get much better. Ten years ago I started seeing Dr.
Kerr and have done so once annually since then. He gives me very little
hope of a cure in the near future but he does treat my symptoms
(banding,hot/cold,numbness etc,)....I therefore view my condition as one
requiring pain managemnt vs a cure. I think acceptance of our condition
is imperative...I try every day to not let TM dictate my life. TM has
not reduced my "bucket list" it has simply made me make some adjustments
due to what I am capable of doing physically.
What make this group (as well as my New Jersey support group) so special
is that we are discussing our problems and limitations with people who
understand and are eager to pass on their own sucesses in order to help
all of us.
It appears that recently this site is doing exactly what it is meant to
do...post questions,get answers and help us to all remember we are not
alone. I recently posted an essay I wrote (for no reason except I wanted
to put down on paper what I could not or would not speak aloud). The
title of the essay is "normal". I am attaching it to this email for the
new members and the ones who have not previously read it. I encourage
all of you to put down on paper your feelings regarding TM...and
hopefully by doing that it helps put our head in the right direction.
Life is short...do everything you can to live it to its fullest...TM is
a challenge and the ones that handle it best I believe have acquired
some acceptance.
OK that is more than enough for one writing!
All the best!
Rob in New Jersey
NORMAL
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 3 MRI's and 2
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 Neurologist
at the top 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 3 weeks in the hospital 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 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 6 months...then it continued to a lesser extent over the
next 6 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 normal people and not someone to be pitied?
I don't know! I drive 40 miles each way to work in New York
traffic. Work an 8-10 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 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.
Ok...after never ending story I have come to see being "normal"
somewhat differently. The people I have come into contact 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 in New Jersey
