this is exactly how i feel
thank you
susan - phx, AZ
On Jan 26, 2012, at 12:22 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 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
-----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
