Daily writing prompt

What advice would you give to your teenage self?

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I developed cervical dystonia at age 13. Talk about traumatic. It’s hard enough to be a teenager, but developing a movement disorder that makes your head constantly shake is even harder. And to add insult to injury, I was on stage when it hit me.

I felt like an old lady. After all, weren’t old women the ones with shaking heads?! While I believed that fallacy in my teen years, I now know that anyone at any age can develop dystonia.

So what would I do differently at 13? What advice could I give my teenage self, besides telling her/me that the stereotypes don’t always apply?

1. Don’t be afraid: Not everyone is staring at you. Developing a neurological disorder out of seemingly nowhere can be scary. I already felt self-conscious, simply because I was a developing teenager. But with head tremors, I thought all eyes must be on me. I remember going to a concert with my family, and they decided to sit in the front row. I held onto my neck and head the whole time, as I thought it must be SO obvious to everyone behind me that I was shaking. In reality, I almost never get comments or stares. In fact, the comments I usually get are when I’m in the doctor’s office: A practitioner will ask me a question, and my head will shake, making them think I responded by saying “no”. I’ll have to correct them if the “no” wasn’t my actual answer. Otherwise, no one ever comments on the tremors!
2. This will make you stronger. I obviously had no idea at 13 what my life would bring. I’ve been through some really crazy and bad stuff. Having to navigate a life-changing disorder taught me flexibility, resilience, strength, and grace.
3. Take care of your body. I had always tried to have good posture. In fact, I’d say it’s only in more recent years that my posture has declined. However, many things in my life I’ve done on and off: working out, eating healthy, getting good sleep, taking vitamins, stretching. I do wish I had done more of those more consistently the past couple decades.
4. There are others out there with this disorder, and they want to connect. While cervical dystonia alone is considered a rare disorder, dystonia itself is actually the third most common movement disorder, right after essential tremors and Parkinson’s. All the subtypes of dystonia are what make them rare (that is my understanding as a non-medical-professional, anyway). There is a large community and many support groups for dystonia. There are in-person events and annual walks to support the search for a cure. I’ve learned a lot from others who have the disorder, and I’ve felt very supported by their encouragement and understanding.
5. God knew this would happen. This is no surprise to Him! He has everything under control. Dystonia need not be the most devastating part of my life, because it’s all part of His plan, and I can trust that He’s got more in store for this disorder in my life.
6. Life is beautiful. There is so much to enjoy. While I had to give up some things I loved, there is so much more to explore and discover. Dystonia doesn’t need to steal my joy.

I can’t go back in time, but I can share my experiences and try to encourage others who are struggling with this disorder. Hopefully we can all make each others’ lives a little easier with our love and support. 💙