WordPress does a series of daily writing prompts for its authors, and I’m going to put a little spin on the first prompt.
Are there any activities or hobbies I’ve outgrown or lost interest in over time due to my dystonia?
I don’t think people realize how much loss and grief there is with an “invisible illness” or “hidden disability” (although I’d argue that dystonia is not always so invisible or hidden!). There’s a lot we give up and stop doing.
I used to play the violin, and well. In 6th grade, I would take a bus over to the junior high school to play with the older kids. At different points, I was first chair in my age group.
I developed cervical (neck) dystonia at age 13, standing on stage in front of my whole church. I was embarrassed by my new disorder. Though I was homeschooled by then, my sister and I were taking private violin lessons. I couldn’t do it anymore. I couldn’t handle my neck pulling my chin off my chin rest. I felt like I was constantly fighting the pulling and couldn’t focus on my lessons.
I also stopped singing in public. I had been on the youth group worship team at my church, and I enjoyed singing for my church. In the middle of a worship session, I became so embarrassed by my neck movements, I ran off stage. I later told my youth pastor, in tears, that I couldn’t sing with the worship team anymore.
Over the years, I’ve lost the ability to do other things. I did some stage acting as a teenager and young adult, but I tried to position myself in a way where I could look to the right, the direction my neck would pull my head. I tried screen acting, but cameras are way more unforgiving about head spasms.
When I started to get comfortable enough with my head shaking and decided I would try singing again, I developed laryngeal dystonia (vocal cord dystonia; AKA, spasmodic dysphonia). I gave up singing entirely, which was crushing. I also surrendered my dream of becoming a public speaker, and I haven’t tried any stage acting since.
For an introvert, I sure do love performing. I don’t know what the future brings. I’m currently learning the drums, so who knows, maybe performing will be in my future again after all.
While dystonia has taken away all my familiar ways of performing, it hasn’t taken away my desire for it. I’m not totally knocked down yet. Hopefully I’ll be on the stage again someday soon. Even better if I’m worshiping and serving God in the process.
What about you? Are there any activities or hobbies you’ve lost, whether due to interest or time or illness?
Chronic in the Midwest 