miscRob,
This is a really great piece you have written. Sounds so very much like a lot
of the rest of us. I had tears in my eyes reading it.
Good for you for writing this. I'm glad that you too think that 'normal' is
overrated. Me too.
I do hope that you have shown this writing to your wife. Perhaps she will
understand just a little better how you feel.
{{Hugs}}
Heather in Calgary
----- Original Message -----
From: Robert Pall
To: tmic
Sent: Friday, April 24, 2009 12:23 PM
Subject: [TMIC] misc
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
