Chapter 6

I awoke Sunday exhausted. The constant twitching jerking had pulled a muscle in my upper back. As I slowly came into awareness, my body jolted awake as well. Having been lightly tremoring all night, my new alert state set off the tremors like fireworks.

I had no control as all my facial muscles rapidly moved in strange ways — painful teethy smiles with squinty eyes, pursed lips — much of it not unlike how a chimpanzee makes faces. It’s one thing to watch a cute Chimpanzee in striped pajamas in a 1960s Disney movie make a range of faces, it’s another to have it be your own face and unable to stop it. Meanwhile, the rest of my body would trade off on where the tremors went.

Feeling hopeless, I just laid in bed and cried. I didn’t want this. What if it was permanent? I spent my childhood feeling alone, misunderstood, ugly, and awkward. As an adult, I had fashioned myself as someone who overcame my ugly ducklingness. I lost weight, bought cuter clothes, fixed my teeth, fixed my hair. I learned to speak more assertively. I became someone who led instead of followed. I thought of myself as capable. I was good teacher, a good friend, and a good wife and mother.

It doesn’t matter if you look put together if you are stuttering, shaking wildly, with strange facials contortions. People will move away, stare in fascination or be scared. Unable to speak clearly and constantly shaking, I cannot teach. I can no longer drive. I’m not safe on the road if I can’t control my body or promise my eyes will be open. I can’t meet up for stuff or take my kids on adventures. Who wants to hang out with someone who is suddenly “weird” and requires energy? Would Dave still want to be with me when I could no longer work and he had to do everything, even just making a phone call? I would not even be a marriage of convenience. I’d be a marriage of inconvenience.

My life was suddenly felt so out of balance. My entire identity was being threatened. I truly believe my closest friends wouldn’t abandon me. But society? I don’t think my social shunning would be intentional. It would be a gradual happening. I know my principal sees my value as a teacher, but does it make fiscal sense to pay someone who can’t teach?

Would my kids pull away? Would they stop viewing me as mom, an figure of love and authority? Would I simply become that lady they visit occasionally?

Am I being dramatic? Yes. Are all my feelings valid? Absolutely. Who am I without all the things that make me “me?” Keep your touchy feely stuff to yourself! I’m a child of God, blah blah blah. No one wants to hear that when they have lost control of their body. It’s not fair. I can’t even make a phone call to schedule an appointment.

I spent the day in bed. I cried. I slept. Then I cried some more. Sometimes Dave joined me in the crying. We had slowly started telling family what had happened. Dave was suddenly tasked with sending emails, answering texts. Crawling on the bed beside me, Dave snuggled in and said, “The hardest part is telling people because it makes it real.”

That evening Robin, my 6 year old, came up to me and ask me to give him a bath. I lifted myself from the bed, shakily trudged down the hall, and turned on the water, like I’ve done a million times. I asked Robin if he wanted me to shampoo him or let him relax for a bit, just like I’ve done a million times before. I let him play and then shampooed him when he was ready. I dried his body and helped him into his pajamas. It was a moment of normalcy. Dave told me later he sent Robin up to me so I wouldn’t feel like a invalid. Dave knew just what I needed.