Tuesday, April 10, 2012

One Year Ago

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 me fussing that it would make me worse, 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, screamed at, mocked, called a fake, accused of drug seeking...I have yet to get over it and I wish I could sue them to this day. The ER at Infirmary West is an utter disgrace. I still despise them, 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 birthday?

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. She refuses to be a caregiver, take me to the doctor, help me with medication, or have me in her home while I'm seriously ill. 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 although many are apathetic, skeptical, and cowardly and make me very angry at times, but mostly sad and weary. Do they realize it could have easily been them walking this road? Because it could have. To be part of such a huge family, I feel like I'm not a part of it at all. Truth hurts, doesn't it? Yes, sometimes it does.

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.