I leave Dr. McHH’s office and head north. I’m exhausted, but my day isn’t close to done. It is the wrong time of day to be driving north. Instead of going home and crawling into bed, I’m driving to Shoreline to meet my friend, Colleen, so we can drive south to downtown to St. James Cathedral. I’ve promised Colleen that I will be her confirmation sponsor. I handed her the kool-aid so it’s only fair. Luckily, Colleen is handling the driving so I can relax a little.
The body tremors are always worse when I’m tired, stressed, nervous, uncomfortable, or some combination. Church is prime time for worsened tremors. Catholic churches are notorious for their hard, cold, unforgiving wooden benches.
Wednesday was Ash Wednesday so we celebrated as a school. As a teacher this means I get to be on high alert. Take off that hooded sweatshirt! Tuck in your shirt! Stop talking! Shhh! Give me that toy! Do not touch the person next to you! No. Don’t.
Heightened alert = increased stress level. My class is in the back row, meaning all the parish adults are behind me, watching. Watching me tremor, watching/judging student behavior = increased stress. Hard wooden bench = uncomfortable.
There’s nothing I can do. My jazz hands are in full recital mode. My left arm does an extra dance occasionally against the top of the pew. A kindergartner stares at me with dead eyes. He can’t look away. I whisper to him that I’m okay. My brain just got hurt. He is un-phased. The kindergartner’s eyes are locked on my hands. The stare is only broken by the procession for ashes and communion.
A day later I’m now heading to the Cathedral with Colleen after a full day of teaching. We go inside and realize we have somehow scored front row seats right next to where the bishop is sitting. It’s cool because now we can see what is going on during the service. Not cool? Exhaustion mixed with hard wooden chairs. I was already stuttering and tremoring and now this? After the first hour (yes you read that right), I am rocking and rolling. Colleen is concerned, but we are doing this! My tremors catch the eye of the bishop. He is kind enough to stare less than the kindergartner, but he definitely looked over at me several times.
As we near the second hour, both Colleen and I are worried I won’t be able to drive home from her house. I sneakily text Dave to let him know that status. We make a plan. As soon as its finally our turn to go up to speak to the Bishop, we leave when it’s done. Colleen offers to leave sooner, but I’m committed. I realize that the neck pain that has been plaguing me and making sleep difficult is due to my body jerking. After our turn with the Bishop, we waste no time heading to the car. Seated in the comfort of a captain’s seat, my body relaxes. It will be okay. I will make it home.
I walk in the door and make a beeline for bed. I’m exhausted. Lying down, the tremors calm, the facial twitches slow down. I wait for sleep to take me. It doesn’t. I get some melatonin. I read. I take some CBD oil. I count backwards from one thousand and yet sleep eludes me. Every time I begin to drift to sleep, my neck pain brings me back to alert.
On two hours of sleep and armed with a cup of coffee, I head to school. I’m also on the first day of an increased dose of gabapentin. I’m stuttering like a mad woman. I quickly let my partner teacher know I’m not going to make it to the end of the day. Some staff encourage me to just go home, but no, I have a science lab ready to go this afternoon. I need to be there for my students. I twitch, stutter, and shake my way through the day. I ask a friend to bring the kids home.
As soon as possible, I head home and straight to sleep. I am awoken by the doorbell ringing, my children asking to be let inside. I heat up the rice in a cloth heat pad Linus made me one Christmas. I continue to reheat it throughout the evening. My neck hurts so badly. Ibuprofen does nothing to cut the pain. I try my old physical therapy stretches which helps. I sleep better Friday night, but the pain continues to haunt me.
Saturday I wake up. I’m not in good shape. I find Dave downstairs. Tears fall down my face as I tell him how frustrated I am. I’ve been doing so well in my recovery and this feels like such a set back. Dave holds me and then spends the weekend trying to lighten my load and be nice to me, even completing things on a honey-do list. I sleep through the entire day and constantly reheat my sack of rice heating pad. Sleep comes easily Saturday night.
“Plush Rush!!!!!”
“AHHHHH!” Eileen decided to wake me up by employing a plush rush as seen in Toy Story 4. My response of sheer terror makes her feel a little guilty. Dave comes in later with coffee and then starts pushing into my back. Dave informs me, “I’m stuffing the bejeezus back in that Eileen scared out of you.”
A little while later I find myself back in church, in the front row no less due to being a supportive confirmation sponsor. I’m doing better than the day before, but I still have two jazz hands, non-stop facial twitches, with a left arm jerk. The older couple from the previous Sunday (the ones who asked about my disease) stops by me to shake my hand as they pass during communion. I guess we’re friends now?
At the end of mass, I go find a maple bar at coffee and donuts before heading to the grocery store. A parent stops me. I know who they are, but they don’t know me since I haven’t taught their kids yet. She appears next to me, tears in her eyes. She tells me that I didn’t know it, but had made a difference for her. She too struggles with body tics/tremors. My bravery to show my tremors gave her strength.
She didn’t know how much my body hurt today or how hard the last few days had been. I needed to hear that today. Just like motherhood, we can gather strength from those who share our journey.