I’ll never forget the first time I experienced its mild yet very noticeable attack. I was 12 then. It was an ordinary Saturday. I was in my room when my mom called me from the dining area. As I walked to her, I suddenly lost control of my legs, feet and arms. I limped slowly towards my mom. She watched me perform this epileptic-like act for about 3 seconds, then laughed. The thing about my mom’s laugh is that it so contagious you can’t help but laugh yourself. So I did. And we just laughed it off. Just like that. Only to find out it was a neurological disorder that is permanent, incurable and…weird.
About a year and a half later, my parents and I visited a neurologist. The way she mentioned my disease was very casual as if she would when she’d say, “it’s just a common cold.” That simple. She enumerated the pluses and minuses of FG (my Mom coined it after seeing me during an attack and realizing I resembled Forrest Gump). FG (dystonia) is not lethal; it does not lead to death or worsens so as to lead to death, at least in my case. Attacks may fluctuate and increase over time, but those are the worst cases. It also does NOT impair my memory, personality and other brain functions. However, dystonia is still incurable. There are drugs to help ease the attacks, but not to eradicate the disease causing them. There are only 2 probable causes: genetics and trauma. Since I don’t recall any traumatic experience in my life, I’m guessing my case is a cause of genetics. But how come none in my family has the disease? I was handpicked for it. 😐
An attack varied in the areas it affected, the times it occurred, the duration and the personal effect on me, which I think bothers me the most. There were times an attack would be precedented; sometimes it’s not. Before a major performance or a strenuous activity, I relax and breathe deeply several times because it relaxes the nerves. Sometimes, I can get an attack while lying down in bed or even reading (my eyes blur for a very few seconds). I hated it whenever it haunted me during a conversation, meeting, class discussion, performance or whenever I needed to move really quick (e.g. getting out of the MRT, writing in a contest). I remembered the time we were in a quiz bee and my teammates told me to write the answer. I mumbled words of rejection and a command to let the other person write. He did. By the time the attack ended, we scored a point, but I felt ashamed of myself. “How strange must have I looked!” I always thought to myself. However, the people who see me get attacked don’t seem to notice. Except for my parents. They usually reenact the scene jokingly. Although there were times when I just wanted to tell them, “It’s not funny at all!” I thanked them because it made me forget of the past and move forward.
I always refer to this disease as my thorn in the flesh. I don’t think of it as God’s punishment (He never does that to His children), but I do put it in the “humbling” category. I am thankful that it keeps me from being proud and claiming my achievements for myself, but sometimes I scorned it when I could not do things my “normal-gened” friends could do. Although I disliked doing military stuff, I really wished I could have joined the Flag Corps back in high school. FG kept me from doing so no matter how much I wanted to. Thankfully, military is not my only option. And praise God because dystonia does not and will not destroy my brain’s functions and parts. There’s just a “miscommunication” between the brain and muscles, but that’s all it is: a miscommunication. 🙂
I am still learning to deal with it. I know at times the problem lies in my perception of myself. I tend to think very lowly of myself because of FG. I was encouraged by the words of a website made for helping dystonia “masters”:
“Teenagers with dystonia are just as intelligent, if not more intelligent, than others their age. Dystonia may make you look or move differently than other people, but it does not affect your ability to be liked, make friends, or date. Dystonia does not affect your personality, creativity, imagination, sense of humor, or style. The fact that you have dystonia does not make you who you are. Young people with dystonia succeed at school, make friends, learn to drive, get dates, have sex, graduate from college, develop fulfilling careers, get married, have families, and accomplish great things. Although living with dystonia can be confusing and difficult at times, it is nothing to be ashamed of or embarrassed about.” (Dystonia Foundation)
Please pray for me–not that I be cured, but that I would walk and live by the Spirit in spite of my challenge. The temptation is for me to complain, sulk and throw a pity party. My Father hates that. I should, too. 🙂