Here's some history. I apparently had TM when I was 5 in 1968, but nobody
knew what was happening to me then. In fact, I only got what I feel was a
proper diagnosis this year when I was referred to Dr. Linton Hopkins at Emory
U Hospital in Atlanta. He spent about an hour with me, after his intern spent
her time gathering prelim info, and really listened to what was happening to
me now and what has happened over the past 28 years.
That was, as many of you know, a delightful and surprising experience. Many
of the things I had been telling docs through the years Hopkins knew without
me trying to convince him. Which is what convinced me his diagnosis was
correct.
I was paralyzed from C3 down for a period of weeks when I was five (blind for
three days -- but never lost the ability to breathe on my own, thank God). I
recovered a substantial amount of use of upper body and got good
compensational use of my legs (I don't have control of the "lifters" in my
upper legs, so I sling them instead, but I walk well with a cane and that's
great). I have nearly no bladder control and finally learned to self-cath;
still having lots of bowel control probs and would apprecitate any feedback on
that issue.
But my point is this: I went through 28 years of having all sorts of med pros
tell me I should be able to fully regain -- everything. That meant I spent
lots of time self-castigating and being depressed over things like
bladder/bowel control. I was actually so relieved when I learned that I had
done much better than might have been expected had anyone been willing to
listen to the patient instead of talk over my head at the wall or something
and try to treat symptoms without trying to gain insight into the whole thing.
A lot of you guys are probably still at the "I'll be better soon" stage.
Here's what I can say from my viewpoint: First, you should always maintain
the ability to believe in yourself. It will never fail you. But don't be
scared of the tools that will help you. For years, since I was supposed to be
better, I tried to avoid all manner of "crutches", whatever the type.
I've since learned that I can actually go places and do things I haven't been
able to do in years -- but only if I accept the tools that make that a
reasonable effort. I got a golf cart so I can travel around my place in the
woods in style. All my fully mobile friends are jealous of it -- especially
the kids. I got a handful of neat canes that make people stop and say "where
did you get that?". They make me happy even when my legs are so tired I don't
think I can make it back to the car. I got my handicap parking permit (I
still hesitate to use it sometimes, because I can walk, but some days it's
really a life saver). And I learned to smile at folks who stare. My gait may
be funny, but it works. You guys who can't get the legs to sling, either,
know walking is worth it even if it is hard work. And I learned to self-cath.
After so many embarrassments, that's probably the best "crutch" ever. I
didn't even know it was possible....
Those days when you put one foot down and it folds like paper sometimes make
you think you should just give up. And everybody's dealt with relationships
that fell apart when the significant other says "I just can't take it" and you
wonder, "what the hell do you have to take?" And I've spent plenty of time
wallowing in self-pity and/or snack foods, Dickell and dog-kicking.
But after so many years of thinking it was just me, that I was somehow
inadequate because I reached a certain point and couldn't get any better than
that, it's great to know this is where I am and I can deal with it. And
if/when it gets worse again, I can deal with that, too.
I have to say Julienne's right: Congratulate yourself on excellent coping
skills. We've got that stuff down. So what are a few nights with the
Pringle's cans? You can destroy the evidence the next morning and who's to
know?
A new/old member of the club...
Later, Ellen
PS: Anybody else know of long-term misdiagnosis cases? Or kids just learning
to cope who could deal with some words of wisdom from someone who remembers in
great detail what that feels like?