I have had Tourette’s Syndrome since my earliest memories. It used to be really bad and painful. I could hold it in at school, but the greedy monster of needing to have a tic would come crawling out of shadows when I got home. The more I tried to satisfy the urge, the more the repetitive motion hurt me; then, the more I had to do it.
Age and wisdom has taught me my triggers. I have small, yet painful tics. I sat in the office of a neurologist at the Mayo Clinic, giving my history, while having tics, yet the doctor said he never observed any. That’s how well I hide them, but they are still quite painful.
However, extreme stress brings the tics out in the most vicious way. The tics present in a way that is entirely new and different.
If you follow me on Twitter or Instagram, you know that spent awhile at the Mayo Clinic. Talk about stressful. Packing. Traveling. Sleep deprivation. Uncertainty about appointments. Doctors who didn’t listen. After a day of travel and the first two days of appointments, I broke down. All of this was after even finally letting my dad push me around in a wheelchair because I couldn’t walk any longer. I just had nothing left to give – not even to walk.
I reclined back in my hotel bed. (Shout out to Megan for recommending the bed wedge!) I was fatigued and crying, yet I couldn’t sleep. I tried to hold a book to read. That didn’t work because my head was out of control. Dystonia normally causes my head the pull backwards and sideways. My tics are normally very hidden.
Yet, I couldn’t stop pushing it forward, rolling it from side to side, clenching my jaw and neck muscles, and finally throwing down my book. The tics that normally feel like a sneeze or an itch, but I was out of control. Stress took my normally small tics and made them large, uncontrollable, and horrifically painful and embarrassing. I couldn’t let my dad into the room.
With tears in my eyes, I though about how if I could see a video of how I looked, I would be embarrassed of myself. I would be horrified of how I looked. How pathetic and stupid I must look. I might have looked stupid. I might have looked like a worthless person.
What does that say about me? Because I move my head in a painful manner, I have no worth? I would never say that about another person. I would never think that about another person.
I rail against the stigma of handicaps and mental illness, but as the stress of seeing doctors (yeah, go figure) for two days had me moving in ways that had me locked away into the hotel room, and I realized that I was judging myself in the same way I wouldn’t want to judge someone else. I wouldn’t want someone to judge me. I’m sick. I’m not stupid. I’m in pain. I would give anything to be able to just cry and fall asleep when I get stressed out, but instead my body reacts differently.
I started to wonder if my different was bad. I wondered what people would think if they really knew. My emotions tell me that my body’s neurological problems are “bad,” and other people react “good.” The false good and bad dichotomy that I’ve learned and lived by since I was very young was at work. Sitting still and getting good grades is “good.” Moving around and getting bad grades is “bad.” I want to be good. Yes, there are good things and there are bad things, but not everything falls neatly into either. In this case, my embarrassing and painful health condition was neither. So, when I hurt myself from repetitive motions because I am stressed out, I believe I am bad and worthless because I am not normal. I am not being the quiet, A+ student.
I don’t have any answers. This is just my story.
I want other people to know that they aren’t bad when their health conditions make them abnormal. Aside from what is normal?, because maybe a lot of people go to their bedrooms and act out in private, I just wanted to write this because I know that I can’t be the only person who feels like this about my health conditions.
Rationally, I know that I’m not a lesser person because I have health conditions and odd neurological reactions to stress – not just odd, but really, really embarrassing. I am writing this because I cannot be the only person who deals with feeling embarrassed of myself, even in private. I cannot be the only person who feels like a hypocrite because I judge myself in a way that I would never to do another person.
I suppose, I would encourage you and myself to embrace ourselves and treat ourselves with the same kindness that we would show to other people. I know that golden rule is to treat others as yourself, but when you treat other people better than yourself because you are mean to yourself in your mind, remember that your emotions lie to you. Try to replace some of your emotionally driven thoughts of embarrassment with the kindness you would show to someone else in your situation. I know it’s easier said than done, but if I can practice it, you can too. I’m really stubborn and resistant to change, but that kind of thinking is self destructive, and I don’t want that pain anymore.
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