Rob,
I read this when you first posted itand reread it today. It's good,
true, and enlightening. I have also met normal looking TMers and
realized how hard it would be for a non TMer to know what we endure. It
allows me to forgive others and myself for trying to put normal in a
box.
Patti - Michigan
.
On Thu, Jan 26, 2012 at 2:22 PM, john snodgrass wrote:
Thanks Rob.
I needed that!
___________________________________
From: Robert Pall <[email protected]>
To: [email protected]; [email protected]
Sent: Thursday, January 26, 2012 1:25 PM
Subject: Re: [TMIC] Everything is relative
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 I took for
granted until one week past my 50 th 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 50 th 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
-----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
