While I lay in the local hospital, post diagnosis, but with a small
committee of doctors in disagreement over what to do. yes, they
included a neurosurgeon consult -- as if cutting me open would restore
my ability to walk.
I was in incredibly searing pain; only paralysis itself kept me from
flipping off the bed.
One doctor told me that if what happened to me had happened to him,
he would want to kill himself.
He asked me if I wanted drugs for my mood because he had read that
depression was attendant to TM. I had a mantra for those
decades-long weeks: I wanted a laptop, not drugs. If they procured a
laptop for me, I could read, communicate, work and my mood would
improve. No I wasn't depressed, I told him and a laptop would be
cheaper than the psycho-meds.
This conversation or variants of it was repeated several times.
There was a patient help group in the hospital and they brought me a
phone book and I found a (bless them bless them) rent to own firm,
that generously brought the laptop i rented to me in the hospital and
kindly picked it up when I was
being moved to another hospital. They saved my life, because I was
able to tell my friends across the country and world that I was
knocked down and paralyzed, and they came to my rescue.
With the laptop by my hospital bed, I was able to look up things for
the doctors to consider, I was able to critique my treatment. I soon
bought the laptop that I write from today -- but I needed one to get
one
because at home I had a desktop, and I had been carried from my house
by stretcher (and was unable to return for 2.5 years, but that's
another story).
I'm wandering a bit but to underscore my points
!. Citing other medical advice that was congruent with my beliefs
helped me manage my care and
persuade my doctors
2. Stand firm in your truth --- we each need what we need. There is a
psychological affect to this condition.
3. It's annoying and tiring , but you have to know more than your
doctors. If I had a million bucks,
I would be mobile, because I could hire the help I need to implement
restorative therapies. Since
I'm poor, it's about wheedle,plead, present, persuade.
4. TM has laid waste to my life. I sit in my wheelchair amidst the
ruins, trying not to tumble on
to the shards below, because if I do, I can't even crawl over them.
--
