[TMIC] Older case of TM
Dgtizr2(AT)aol.com
Thu, 08 Apr 1999 10:34:19 -0700
Hi!
I have just in the past few days found the Transverse Myelitis Support
Group, and am not sure if this is how to get in touch with anyone in charge.
I wanted to add our story to the ones I have already read.
When I was 14 years old (I am the oldest of 4 kids), one day we were
coming home from school on the bus. We lived in West Virginia, on a
mountain, and a neighbor was our bus driver. He let his kids off the bus,
and then looked in the mirror at me, and said "Norma, I think y'all are
s'posed to get off here. Your mom is sick".
Those words changed the rest of my life, and everyone elses' in our family.
In those days, the telephones there were on a party-line setup. (1969).
My mom had been making the bed, and started feeling funny, all tingly in her
chest, like electricity was running all thru her. Then she started to hurt,
so she went in and asked the people on the phone if she could use it. She
proceeded to call her Dr., and call Daddy at work. She said while she was on
the phone, she watched her stomach muscles let go, then she slid out of the
chair an onto the floor. The phone went with her. So she finished the
conversation laying on the floor, with the phone by her head. One of the
neighbors she had interrupted, the bus driver's wife, knew something was
wrong, so she came down to see if she could help. She dressed my mom, and
stayed with her until Daddy came home. He took her to the Dr, then to the
hospital, and she ended up in University of VA at Charlottesville, where
Christover Reeve later was treated. She was in there for a long time, then
transferred to a hospital in Charleston, WV. I got to go see her once, in U
of VA.
My youngest brother was only 4, so during the day, he stayed with wives
of the guys my dad worked with. Each one would keep him for a week. Our
babsitter came to stay with us for a couple weeks, and she would be there
when we got home. I was 14 at the time, and already knew how to do all the
housework, but was not allowed to babysit. My brother 2 yrs younger is
extremely mean and violent, so he was not left with us. We would get off the
bus and stay at a neighbor's house until about time for Daddy to get home.
Daddy and I took turns fixing supper, and sometimes it was not very
wonderful. But we had a policy: if you don't eat it tonight, you get it
tomorrow night, leftover. So we got by. I took care of the dishes, laundry,
ironing Daddy's work shirts, doing my homework, and cleaning the house,
besides going to school. Some nights Daddy was in bed before I was done with
the housework.
After 4 months, Mommy got to come home. She had been partially
paralyzed between her shoulders, but could walk if someone held onto her
around her shoulders. She had no bowel or bladder control, had a catheter,
had no control over her emotions, had no use of her fingers at all. When she
sat, her legs jumped and she had to move them a lot. For a short time an
aunt came to stay with us, but she was more trouble than help, so she left
before too long. So, Daddy and I took care of my mom, while he worked, and I
went to school, did the housework, cooking and laundry, plus taking care of
the other 3 kids, and the garden, mowing, and outside chores. For Mommy, I
had to wash and curl her hair, take care of her in the bathroom, clean up her
accidents, take care of periods, give her baths and shave her legs, redo some
of her clothes to accomodate velcro. She had pretty much turned into an
unpleasant shrew who screamed at me from the minute I got up in the morning
until the minute I got on the bus for school, then started again as soon as I
got home. I had 4 years of that, every day, and was not allowed to get a job
or date, or go anywhere, I was supposed to stay home and take care of my Mom
and work. My brother 2 years younger spent a lot of time running away from
home, in and out of jail for stealing and breaking and entering. My sister 5
years younger is my Mom's pet, and spent most of her time sitting around
reading and playing. My poor little brother was passed around the whole time
during the school year until he got in school. He does not remember the
mostly nice person my mom used to be, he only knows the shrew. Every time
there was a gathering at church, like an ice cream supper or something, my
Mom would throw a tantrum and end up staying home usually. My parents
actually told me I was not getting a job, I had to stay home and work. That
is a hard thing for a high school senior to face. I ended up getting
married, and moving away. I felt like it was someone elses turn to be
screamed at and still be stuck with most of the work.
I do not feel like that any more, but when I go back to visit, my Mom,
who I know loves me, still falls right back into the
boss-me-around-treat-me-like-dirt rut, while showing me all the time how much
she thinks of my little sister. That is so prevalent, I began to wonder if I
was adopted or something. Even my Dad's parents and sibling notice it, and
can't figure out why. Anyway, some of the things that I noticed since then;
are things like "shorts" in my mom's memory. She starts talking about
someone who is my friend coming to see me, and it is a person I have never
met before. And insisting that I refused to go to summer camp. I was never
offered the opportunity. Then there was the time, couple of years ago, when,
with my husband right there, that she threw a screaming fit and accused me of
having the FBI after me for not paying for a vacuum cleaner. I have no idea
where that came from, I still have the only vacuum I have ever bought. Paid
off in the 90-day-same-as-cash time period. I have had that vacuum for 23
years now. Anyway, she always told us that the Drs. never figured out what
was wrong with her. I now have back problems, and after talking to my DR.
about my mother, asked her to have her medical records transferred to my Dr.
They were sent to me, so imagine my surprise to read some of them, and find
out that, back in 1969, they diagnosed her with TM. Then, I found out that
she told her family, but gave my Dad's family the same story she gave me
about no diagnosis. She still has no use of her fingers, and now it has been
30 years, so her hands look really different, because most of the bulk of
hands is muscle, and most of hers has not been in use for 30 years. She
still talks about what she is going to do when she gets well. She has a
droopy left side of face, has trouble with potty control, loses her balance
easily, and can be just standing there and sort of comes unhinged at the hips
and does the splits sideways and bruises everything.
She falls easily, and has had 2 bad falls on cement and stone, banging her
head. Refuses to go to the Dr. She does drive, even tho she cannot hold
onto the steering wheel with her fingers, and years ago had a wreck and broke
her neck and had to be screwed into a halo. Besides all that, she drives,
gardens, sews, cooks, does ceramics, paints, and is very pleasant (to her
friends and strangers). She is still pretty awful to me and Daddy. He has
since retired, and spends most of his time working in his wood shop or with
his sawmill, to be out of the house. My husband's mother is 84, my Grandma
is 82, and they are both in better physical shape than my mom. So I think
aging will be rough for her, in the shape she is already. Because of her
changeable moods, and violent temper tantrums, I never leave my children
alone with her. I would not go off shopping with my sister and leave the
girls with their Grandma, they would not be safe.
So, I am sorry to be so long-winded. I was surprised to find out that
the Drs. actually did know what was wrong with my mom, and I immediately
started looking up whatever I could find out about it, and found you! I just
wanted to tell someone our story. Do you have any others who have been
afflicted with it that long ago? If so, I would be interested in writing
them, to see how they are doing now.
Thank you for your time, and keep up the good work. It helps just
knowing others are out there, and all pulling for each other. I am also glad
they have new treatments, and more hope for people with this affliction today.
Please write!
Dgtizr2(AT)aol.com