Beyond My Control

Every few weeks, I meet with my doctors to continue my medical treatment for my neurological disorder. I have to meet with more than one doctor, due to the fact that I am suffering from various symptoms. Every time I go, I feel scared.

Whenever I visit the clinics and the hospital, I feel very small. I see blind people wearing sunglasses and walking with canes, and I see others being led by Seeing Eye dogs. There are patients being pushed in wheelchairs, which always gives me a flashback to the night I spent in the emergency room, and orderlies pushed me around the hospital in a wheelchair to get me from one unit to the next. At the hospital, I catch glimpses of people lying in bed, hooked up to machines.

I feel sorry for them, and I wish that I could heal all of them. However, a small, selfish part of me hates seeing them, because I can't help thinking, Am I going to end up like them? Is that my future? 

Since September, I have been to more doctors and undergone more medical procedures than I can count. At first, I got worse, and the neurologist who was treating me increased my medication. She told me that if the medication didn't work, I would have to get brain surgery. If that didn't help, I would go permanently blind.

I've always hated that medication. It made me feel tired all the time, and I lost weight because I barely had the energy to finish a sandwich. It also made me sick on a regular basis. I hated that I was dependent on that medication and on my doctors. One of the things about being a Type A personality is that I am a control freak. The fact that my health is beyond my control frightens me.

When I go in for my treatment, I try to focus on getting better. I try not to think about how my life (and my work) will change completely if I get even worse. The problem with a neurological disorder is that if something goes really wrong, that's it. It's not like I can get a brain transplant.

I try not to think about going blind, but I can't help that either. If I went blind, I wouldn't be able to see Lake Michigan, the Chicago skyline, or Grant Park anymore. I wouldn't be able to just go into a bookstore and browse, unless they had books available in Braille. I wouldn't even be able to see the words on my computer or in my journal, which would change my writing process.

I also try not to think about the anger I still feel at my parents for blaming me for getting sick, even though my doctors said they were wrong. I say nothing to my parents about the fact that they haven't asked about my health in months.

I do think about how grateful I am to all of you, for leaving positive, encouraging comments on my blog when I wrote about my diagnosis. I am grateful to those of you who sent me nice e-mails to let me know that you supported me. When I went to the emergency room the first time, I felt so alone, lost, and scared. Reading what you all wrote made me feel better, and it helped me cope with the anger I felt at all the people in my life who weren't there for me.

My doctors say that I am finally getting better, though I still have to stay on the medication (a reduced dosage, at least) and come in for regular medical treatment. They say that what I have is chronic and can't be cured; it could always come back, and then I really might go blind the next time. That's why it's imperative that I find a full-time job with good health insurance that would cover more medical treatment.

I don't know what's going to happen in the future. I hope that I will continue to get better. Thank you to all of you who have been so kind to me. I really appreciate it.

What about you? Have you ever felt like something was beyond your control? How did you deal with it?