Re: Bill's question/Julienne's response
mlmohm (mlmohm(AT)prodigy.net)
Thu, 31 Jul 1997 14:12:09 +0000
Ellen Wilson wrote:
>
> I'm new to your dialogue, but would like to share some thoughts re:
> 1) The head screaming "don't do that, you'll be better soon"
> 2) Dog kicking, substance abuse, Pringles abuse, etc.
> 3) My own experience....
>
> 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?
Ellen Wilson
That was the best letter I have read in a long time. I'm afraid I still
have a lot of coping to do, but your letter shows that it can be done. I
have reached the pont of accepting the fact that I will slways have TM
so get on with it. Its my significant other. I worry that I am a
albatross around his neck and he will want out. Any others feel that
way? Mary