Hello list,
We have just finished a 16 night Panama Canal Cruise, and I must say, that
it is sure the easiest way for us to travel these days. We had a wonderful
time, and the service that was given to me was just incredible. I felt like a
pampered soul the entire time, and it sure is a wonderful feeling. Although
I don't ask or require anywhere near the amount of help that was extended to
me, it made me feel good to know that if I did need it, I would not need to
worry that I would be able to still have a good time.
We are now spending a few days in Orlando before returning to our home in
No. CA. Today we met a lady named Erica, and when we were talking she asked
if
I had an accident since I was using the wheelchair. I have had a lot of
spasms the past few days and not walking very well, even with my crutches.
Anyway, when my husband told her that I hadn't had an accident but that it was
caused by a virus, she immediately asked if I had Transverse Myelitis. When I
said YES, her eyes welled up with tears. It was a real intense moment. Her
father had gotten TM and it was a slowly progressing onset for him, and he
had a very hard time getting a diagnosis. They thought he had Guillian-Barre
(sp?). It took one and a half years to get the TM diagnosis, and he was in
excruciating pain. Unfortunately, he just couldn't deal with it, the pain
made
him crazy. He didn't want to get involved with any support groups either
and wouldn't go onto anti-depressants. He was one of the unlucky ones who
didn't get any improvement. He ended up committing suicide to end his pain.
This was a real bonding moment for the 3 of us.
I can't tell you how much pain this woman and her family had gone through
due to this. She's better now, but she says that her brother is still really
a
mess.
I say this only because I want people to know how much TM affects us and
those around us. We know how hard it is to try to be in a positive mood most
of
the time. When my pain gets unbearable to deal with in front of people,
it's usually when my spasms are pretty bad, I excuse myself and go into
another
room and spend some time alone until it passes. I don't want anyone to have
to see me like that anymore than necessary, and my medication usually makes
it easier to deal with once it kicks in. It's generally when I've overdone
it or have taken it off schedule (my fault), but still definitely not any fun.
Erica has made a friendship with another TMer, and his name is Neil McNeil.
I may not have spelled it correctly, but the name sounded familiar to me.
Neil, if you are out there in TMIC land, please send me an email and let me
know.
Hugs to all,
Barbara A from Auburn, CA
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