My world came to an abrupt halt. Barely able to walk following a class that I taught, I went to my sister's house and crashed into a Hypokalemic attack that changed my life. I was helped to bed and woke up hours later unable to get up. I managed to reach for my phone and text my brother, who took me to the emergency room at Providence Hospital. By the time I was seen, I could no longer use my limbs or trunk. I was in an episode of flaccid paralysis. Thankfully I could still speak, but the ER doctor interrupted me as I tried to explain what needed to be done. "Yeah I know what it is", he said. Great, I told him. Finally someone knows what it is.
Then I was given a sodium chloride
IV, despite my opposition, and was released in
just as bad of shape as when I arrived.
Since then, I am weak 24/7 and crash almost daily into
episodes of paralysis...sometimes unable to move or speak. I returned
to another emergency room in May - Infirmary West - in full blown
paralysis, and I was mocked and mistreated the 20 hours I was helplessly
in their "care". I was jabbed repeatedly in the chest, yelled at,
mocked, called a fake, accused of drug seeking...I have yet to get over
it and I pray to God I never
experience such a nightmare again. I would rather die, I'm almost sure of it.
After this happened, the MDA finally acknowledged me (I
had been trying to get an appointment with their clinic for over a year
prior), and the doctor concluded that I am permanently disabled. On my
best days, I can walk with assistance of crutches or a walker. There are
times when I can drive short distances. I shop and get around large
places with a borrowed power chair. I looked at buying a used power
chair the week of my birthday. Who shops for a wheelchair for their 34th
My mother says she supports me yet rejects my
condition (in the name of religion) and won't listen to or read any
information about it. The MDA doc urged me to make my family understand,
but she said she doesn't want to hear it or know anything about it. My father is
deceased and didn't believe me when he was alive. My siblings care but
have their own lives to worry about, they don't want or need to be
concerned with me. I love my relatives...God knows I do, but many are apathetic,
skeptical, and make me angry at times. Do they realize it could have easily been them traveling this
road? Because it could have.
In spite of my efforts over the past year, my condition
has not improved anywhere near the function that I once had. My body is
completely different now, severely weak and unstable on a daily basis
from the chaos of this progressive disease. I'm grateful for what I
have, but I can't help but grieve for all that I've lost and all that
could have and should have been.
I am broken.
But, I'm not dead yet. I'll never stop trying, and I won't stop hoping for better days.