My Story so Far

I was born with Charcot Marie Tooth, or CMT. It’s a currently incurable nerve disorder that means I was already born with incomplete nerves in my body. I was rather weak as a child, and I spent most of my time reading or day dreaming, and I was a bit lonely since I couldn’t cope with both my disease and a social life so young. My life still looked normal though, and I could learn to eventually cope with my disease from birth.

When I turned 11 my appendix burst, and I soon had a dangerous case of Sepsis. I was thankfully saved with a last minute surgery, and I had to spent a long time in the hospital, but this would haunt me for years. The Sepsis managed to give me, of all things, CIDP. So I had a double whammy of nerve diseases on me now, and rapidly my body started to degenerate. It took only a year for me to have complete drop foot, and to start losing my ability to write. The Doctors, thinking this was my CMT, said they couldn’t do anything about it, and just gave me AFO’s to wear and told me to wait it out.

But by age 13 my right foot was mutated, and I was losing my ability to walk. I almost dropped out of school since I couldn’t cope, and I soon found myself stuck at home most of the time due to cramps and fatigue. I started to write and study classical music at this time, as well as Buddhism, since I had little else to do. I had to cope somehow. When I was 14 I had to get surgery since my right foot was so mutated and growing strangely that I risked never being able to walk again. They fixed my foot, moved some muscles around so my foot went back into a proper position, and then put me in a cast for three months for this major operation to heal up.

During this period I started painting and writing, and I did it mainly to help my hands since they were steadily growing weaker and weaker. It worked a bit, and I had more flexible and responsive hands, and in the time of this I became a pretty good painter, and I was an alright writer. At least during this period I had the artistic aspirations to keep me going… and honestly, I felt little pain when I painted and wrote.

Well eventually my 16th year came along, and by now the surgery to correct my fallen foot had been reversed. The muscles in my feet had worn down a lot, and I was having constant fatigue attacks, and also I was having trouble walking again. Not from mutations anymore, but from a lack of strength. This is when the doctors I was seeing started to wonder if I just had CMT, since CMT usually doesn’t progress this quickly. I was almost paralyzed, and I was having near constant attacks that kept me in my bed. I still managed to snake by through high school, but it was hard.

During this period I worked on some short stories and my first novel, and I nearly finished my novel at that despite being barely able to write. I was using a combination of typing and voice software to write now; I’d type in the punctuation, and say the words, and this allowed me to write at an alright speed.

Eventually a new Doctor I was seeing suspected that I may have CIDP. She started to find nerves that were almost completely gone in my hands, and I started to show respiratory problems as well as a curving spine. She put me on IVIG treatments shortly after I turned 18, and then checked to see if I was improving or if my progression had stopped. The results were quick. I started to regain a small amount of muscle in my hands and back, and my progression stopped completely. I finally had a correct diagnoses.

Well, I did a bunch of very stupid things at this time. I could barely walk, and I had trouble writing, and I was often weak, but I wanted to be ‘normal’. I gave up my writing, got a job, got friends, and went down a messy road full of alcohol, drug abuse, and self destruction. I nearly became an alcoholic, I worked myself until I was sick, and I went to IVIG treatments constantly in hope that my CIDP will be completely reversed. Despite me having to go through so much during my early teen years, my 18th and 19th years were by far the worst. It was mostly due to my own stupidity, as well as my depression.

When I turned 19 everything fell apart at once. I lost my job, I lost a lot of my friends, and then I broke my ankle from a fall due to my own idiocy. I had a suicide attempt shortly afterwards in that I overdosed on sleeping pills, but I was saved after my grandparents found me and took me to the hospital. For a couple months I was stuck in my room, thinking and wondering and worried. I gave up the bottle and tried to reverse what I did in the last 2 years. I started writing again, composing music, and even gave an attempt at painting. Painting was difficult though, since by this time my hands were almost useless. I also worked at dealing with my depression.

A part of me wants to be normal. I know that along with my diseases I also have a passionate gift for the arts that has carried me painlessly through rough times. But even with this there’s a part of me that wants neither. I always hoped I would be cured of everything, and be able to get a normal job, have a normal family, and enjoy my normal vacations to normal locations and never have to worry about my health, or even my artistic obligations. But I have little choice anymore. I have to accept that I’m not normal, and likely won’t ever be.

I should mention my grandparents. They took me in after my Mother abandoned me when I was very young, and they have worked hard at raising me and making me feel better. They have been through much stress over the years over me, and half of their life revolves around me and well-being. I was selfish for what I did during my 18th and 19th years, and I can’t apologize enough. They are very loving people, and if it weren’t for them I would not be who I am today.

Well I’m 20 now, and I am writing again. I’m working constantly on my next novel, and reading a fair bit. School is too stressful for me, and people learn more quickly through self-learning anyways, so I am opting out of college and university. I have a library card, the internet, and my voice software, and that’s enough to help me pursue my goal.

Ahh, my goal. I just want to be a writer. I want to write about what is in my head, and share my ideas with the world. I want to help other people, and spread compassion to those that read my words. I want to uplift people, and inspire, and live my life through words and laugher. It will work, and I know it. My disability will not keep me from being a great writer.

The years ahead of me will be strange. I have CIDP, CMT, and a strong artistic passion; and this will make for one hell of a strange combination. I’m going to work on keeping my health in check at the same time, and have hope.

I just wanted to share this story since I thought it was worth sharing. Thanks for reading.