Re: Bill's question/Julienne's response

Amy Thropp (athropp(AT)mindspring.com)
Thu, 31 Jul 1997 08:53:45 -0400

At 02:12 PM 7/31/97 +0000, you wrote:
>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
>
>

Mary,

Speaking as the significant other to Steve who is the one with TM, it can be
very difficult to watch your spouse suffer and be helpless to change
anything, but I have learned that I can survive just about anything and this
bout we are having with TM is just another step in life. I am going to
share something with all of you that has caused us great pain and has
contributed to Steve's suffering more than TM ever could.

Our 16 year old daughter ran away from home 3 weeks ago and we have no idea
where she is. I don't tell you this to gain sympathy (but any prayers on
Rachel's behalf wouldn't hurt). I just want to remind people about the
effects of stress on TM and how it is possible to cope even with the most
difficult of times. Steve has been steadily recovering, although slowly.
You can review some of my previous posts to see his progress. This episode
should have set him back tremendously, but he is so focused on getting
Rachel home and keeping up our strength for our son who is only 8 and has
been away for the summer and doesn't know yet that his sister is gone. It
has been a nightmare for us, and yet, Steve hasn't had a significant
increase in symptoms or problems related to his TM, although I do see him
wince or grab his side when it starts spasming, but it doesn't seem to be
any more than usual.

I guess that when it comes down to it, everyone with TM or a chronic disease
like it should really try to put their energies into something that
completely absorbs them. It's amazing how you can put aside your bodily
symptoms by intensely focusing your mind on something else. I know this
sounds crazy, but if anything good could come out of Rachel's leaving, it is
that Steve found out how to cope with his disease. Now he is focusing on
work, our son, his music (he plays the piano) and our life going forward and
he still slowly continues to improve. He's coming up on the 1 year
aniversary of his TM attack and I have to say that he is significantly better.

We are all stronger than we give ourselves credit for. Keep the faith, folks.

Amy