Monday, May 11, 2015

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?

9 comments:

  1. I'm so glad you are improving. I hope the medication isn't making you sick at the current dosage.

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    1. Hi Annalisa,
      I appreciate your concern! The fact that I'm taking less medication has definitely made a difference; I'm still not 100% yet, unfortunately, but I'm not getting sick as often as I used to. I hope that one day I'll eventually be able to stop taking the meds altogether.

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  2. That is so hard. Having an ongoing disorder is about taking little steps every day, and dealing with the ones that move you backwards instead of forward. I hope you continue to find ways to cope that work for you and that you do find a cure!

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    1. Hi Emily,
      Thank you! I wish there was a cure for this; my biggest fears are that I'll get even worse than I was before and that I won't get better the next time. But fortunately, I've finally started to get better, so I'm hopeful.

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  3. That is so hard. Having an ongoing disorder is about taking little steps every day, and dealing with the ones that move you backwards instead of forward. I hope you continue to find ways to cope that work for you and that you do find a cure!

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  4. Congratulations on the fact that your treatment is working. That is some good news. I'm sorry that your family isn't supporting you and I can just imagine how much that hurts. I fear losing one of my senses too, but one thing I've learnt about you is that you are a determined woman who can do most things she puts her mind to it. So, if that time ever comes where you lose your vision, you will adapt and find a way to keeping going and live your life the way you want, because you are resourceful and don't ever give up. It's why I admire you so much. But, you don't have to worry about it just yet. It just makes you appreciate being able to see and experience everything in your life at the moment. No matter what happens, we all support you and I hope your health keeps getting better. Don't give up.

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    1. Hi Murees,
      Thank you for your kind words and your support. It helps, truly. I hoped that my parents would be sympathetic when I was in the ER, but they weren't. Even if I do go blind, I will find a way to live on my own or find help from others.
      I hope that you won't ever lose any of your senses; it was only until I was faced with the prospect of losing one that I fully realized how important all these senses are.

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  5. I hope everything goes smoothly with your dissertation! 80 applications, wow! Do you have the chance to apply to places in Canada, too? That'd be neat!
    Glad to hear they were able to reduce the medication, at least.

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    1. Hi Deniz,
      Sorry about my late response! Those applications took a long time to fill out; some applications were several pages long. I did apply to one school in Canada, but I didn't get in. I wouldn't mind living there, especially if it was some place like Montreal or Quebec. I'd probably have to learn French, though, which would be fine.

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