I was asked this semester to share a sentence about myself. My sentence was; My mother has Myasthenia Gravis. I know it's Wikipedia, but the pertinent details are there, the things we tried, the things we did, what it is. The translation is odd to me. Myasthenia never had a translation but "hard to do everything" to me, but Gravis was always "Grave." I'm writing this more for myself than to share a family story, but it is a family thing. It's changed a lot of our lives. Myasthenia Gravis, if the link doesn't work, is a neurological disease which blocks the chemicals from cleaning up the receptors which catch the signals to move muscles. The chemicals that tell the muscle to move then build up like plaque on teeth.
In human terms, it gets harder and harder to move every time you repeat a motion. It's called "My Grave" because it can affect the lungs, the throat, the eyes; the entire nervous system. Anything you do on a regular basis, it can attack, and will, eventually. There was no cure for a long time until one was stumbled across in a snake which paralyzes people through its venom. The venom actually cleans off the chemicals coming to activate the muscles! This is horrible if you're not in need of extra assistance, but amazing if you are.
I don't have a family history, or a vast knowledge of Whales to bring you. I barely knew my grandparents. I don't even know what lineage my Grandmother is. I'd ask her, but her life is too interesting and she doesn't like to talk about the rest of her family. Most of them died of suicide. What I'm left with is my close family, my immediate family, and my mother has Myasthenia Gravis.
It's hard to remember all the details surrounding how or when it started. It was at its worst when I was 14. My mother became deathly ill after eating a donut in the laboratory. She had to go to the doctor to find out what it was, but they wouldn't give her access to the MSDS sheets. They fought her about it and refused to allow her a hard copy. She works in a lab, so there were thousands of chemicals she was exposed to in day to day life. Her doctors were asking for them and she couldn't get them. My mother's a fighter, she's a pure blood pit viper, and she called OCEA about it, and she fought with all the mar and blood she could to get better for us.
I remember one day coming out of my room and hearing my mom talking to my dad. "If this kills me, you have to fight, you have to sue them. I've got all the information written down, I've kept a good log. You need to sue them for what they did to me." We were at the third specialist or so by that point. "When I die, you have to fight." I remember sitting down on the stairs looking through the railings, scared for my mother. My sister and I were already sworn to silence about OCEA. It was imperative we kept our mouths tight outside of the house so things couldn't be used against her. We still didn't know what was making our mother sick.
I felt helpless also because that summer I'd just started high school and I'd broken ties with all of my pre-school friends because of emotional mistreatment. The relationships just weren't equal. I would get all of their baggage, get called names, have my house used for their internet activity, and nothing to show for it. My mother helped me realize that friendships need to be give and take, not just give, and give, and give. She helped me realize that my friend was spiraling me down into a depression because I couldn't help her, but she kept asking for it. It was just a cycle of going nowhere, of getting nothing. I went to the friend I broke up with in the gym locker room. For some ungodly reason we had three classes together that year. I told her, "If I don't show up for a week, it's because my mom died." She didn't so much as ask me why.
As she spiraled down, I spent a lot of time with my mom. I was afraid of losing her, but I was more afraid of being that ungrateful child who never even knew their parent. As she deteriorated, we talked, and played video games, and pondered stories in the middle of the night. I found out she actually tried to be a writer, but she didn't have enough emotion in her work. I encouraged her to write again, and she began to write. Our new hobby was her reading what she was writing to me.
After OCEA got the MSDS sheets, after a few more doctors, ranking up to like five or six, we stumbled upon a man called Spitzer. My mom could barely walk up the stairs. She was dizzy all the time. She constantly needed naps every few hours to get any energy at all. That was actually time for her body to clear off her nervous system, we find out later. Spitzer saw her for a while, and sent her to specialists of all sorts. Eye specialists for the dizziness, ear specialists, gut specialists, breathing specialists, she saw everyone.
The breathing specialist, we found out later, had grim expectations. She went back to see him for something and he had to do a double take at the door. She gave her few smiles and asked if he remembered her. He told her "It can't be, I remember you! I didn't expect to see you again. I expected you would die within the year."
Spitzer, on a whim after seeing her one day had prescribed her Mesthanon, as it used to be called [The off-brand drug is called something different], the drug form of the snake venom. She tested negative for Myasthenia Gravis already, but he knew that if she took it, there was little harm. She'd vomit, have the runs, and droopy lips, and stop taking it. If she did have it, she'd get better.
I came home from school one day and my mom was awake. She asked me if I wanted to go out to buy a game I'd been wanting. I nearly cried on the way there as she told me about Spitzer's shot in the dark, and that she didn't want to believe it was true, that it was too good to be true. We had four options at this point, and Myasthenia Gravis was the only one which wouldn't be fatal, and could possibly go into remission. That's what she had. We always say in my family that she gets lucky with the big things. This was huge. She actually bought me Desguia 2, the second in a series of games we'd been playing before she started writing. She wanted to give it a week to really see if it was the Mesthanon or something else before telling everyone, and admitting that's what it was. It had already been two days and she was feeling much better. She was actually out of the house on something other than a weekend, to be out of the house! It was the first time she'd driven with me alone anywhere in about 4 years. That was somewhere in my high school career. I was younger than 16, so probably 10th grade.
Spitzer's off the wall idea saved my mother's life. After her life was saved, it was a fight to get her stable. First it was catheters for blood transfusions, but those plugged up, then it was more intense blood transfusions, which always made her sick. I learned to drive in case I had to drive her home from the hospital after one of those. Even with Mesthanon, she had to take 8 pills a day at her worst, and 4 right after a transfusion.
She had surgery after she couldn't take the transfusions any more, but she was still sick from years of infections growing in a poorly closed C-section, my older sister's birth. The doctors continued to pile up. She had 4 rare bacteria infecting her from that C-section. She went on auto-immune suppressants for the Myasthenia Gravis, so for years we were banned to our rooms if we had so much as a sniffle. If she was sick, she was home practically dead for a week, puking, laying on the couch, dizzy, everything all over again.
Then came the Thymectomy. They broke open her rib cage to remove her thymus (not her thyroid), which should have been the size of a pea in a grown adult, and was the size of a fist. It was probably going to become cancerous if it hadn't been removed. As I said, she's lucky in the big things. In the hospital she was in the ICU until I noticed the nurses were feeding her 8 doses of Mesthanon a day, when she had just had a blood transfusion, and should be down at 4. The 8 had been a suggested starting point in case her breathing gave out since they were not sure how she would respond to surgery. I told them it wasn't necessary, they dropped it to 4, and she was out of the ICU in less than 12 hours, home in maybe two days. She barely remembers any of it, luckily. My sister is the one who was strongest for her then. That was one of the first times I nearly fainted in my life.
It took her at least two years to recover from the damage to her rib cage. Myasthenia Gravis patients heal slowly, so her bones weren't knitting together quickly at all. She was out of work for six months. We had a lot of time to bond. I drove her around at that point. I learned very quickly how to drive like a feather so she wouldn't jostle at all and cause the bones to rub together. I remember we were driving home from somewhere when we discovered the pain of a sneeze. It would expand her chest and jostle her entire frame. I still theorize that it gave me panic attacks about driving cars, that and the driver's education scare tactics. She had a butterfly bean pillow to hug.
It was gotten for me when we went out to my Grandfather's burial. It was wonderful in the car. The Butterfly gained a new purpose when I handed it to her and it fit like a glove in her arms giving her just enough support to hold her arms across her chest in a comfortable manner. She didn't separate from it for at least a year. It went with us everywhere she was.
At the time the doctor had her on so many drugs because of side effects she looked like an old person. We thought she had Cataplexy, a form of narcolepsy attached to emotions, and Rheumatoid Arthritis, and depression, and at least three other things. Each had side effects, and more drugs. Spitzer was trying to cure everything, but time was really what she needed.
Spitzer left. He moved up north. I never remember where exactly. It was either the Sioux locks area or somewhere else like that. She took the drive once with my dad to go see him, but he prescribed her a new doctor. The new doctor saw her once before he left Michigan. They lost her records in the meantime. The thing needed to be lost though, it was thicker than The Complete Works of William Shakespeare. His only advice for her, try to get off one drug.
My mom has always been a fighter. She weaned herself off all of them but the Mesthanon. It worked. Suddenly I had a mom again. She finished her book series about that time. It turned out to be a 12-14 book series. She's still editing and fiddling with the last ones.
Now, after all this time, I'm finally reflecting. I started High School in 2004. I got my mom back in 2013. Finally, we stopped asking her if she needed a Mesthanon. I stopped worrying about her falling. This is my family story because even though she seems as though she's in remission, my mother has Myasthenia Gravis, and it changed my life. When people call to collect for Cancer, I make a point to spread the word. Cancer isn't the only thing that can kill you. There is little research being done into Myasthenia Gravis, more now than when she first was diagnosed with it. I ask the representative; "Have you heard of Myasthenia Gravis?" Maybe it's a cruel thing to do, to ask someone who's volunteering for a horrific thing an offhanded comment about a disease that affects so little of the population, but cancer is being cured. Myasthenia Gravis overwhelms any regular practitioner. It shouldn't have taken 12 doctors to find one who only knew about it because he was a specialist in neurological diseases and had another patient with it. I want people to google it. I want people to look it up.
I have met other people on campus who have had an uncle or a grandfather, or a distant relative who's had it. They recognize it, but not the day to day struggle of living with it. I want everyone to know that this is real, and it's not like cancer. You cannot cut it out. I want it to be more than a House episode that was just a suggestion. People who live through this can't answer "What's that?" They are too tired to even deal with answering machines some days. So here I am, telling a handful of probably 2 people, or a class full of maybe 18, My mom has Myasthenia Gravis. It's a neurological disease that makes it harder and harder to use your muscles the more you use them. This is the extended version, my family's story.