Struggling and Growing with Dystonia

All my life my dominant right arm would clench and curl whenever I wrote or held something. No one could tell me why. It wasn’t until my senior year in high school when I was finally diagnosed with an incurable rare neurological movement disorder called Dystonia. 

The doctors told me my Dystonia may or may not get worse but I shouldn’t worry about it until it happens.

A few years went by and I did some volunteer and mission work overseas. At the age of 24, while working a full-time job, my body started turning on me. It started with slight tremors in my neck. It was easy to shrug it off and blame it on working too much but as the tremors got progressively worse, denying it became impossible. 

My primary symptoms were nonstop pulsations through my neck which caused my back to hunch and my head to rock. I would get dizzy and have the hardest time doing the most simple things. My tongue would push up and out causing my speech to slur and spit to fly. 

I stubbornly tried to keep working for far too long. At one point I was taking sixteen muscle relaxers a day, trying to neutralize the symptoms, before I finally listened to my doctor and quit my job. The reality that I was now disabled wrecked me. I struggled to get used to my new normal. The isolation was extreme, going out became so much work. I remember waking up one day and crying because I knew I had to go shopping. I couldn't exercise and I wasn't eating well so I gained a lot of weight. There were so many little humiliations. 

I struggled so much with shame and feeling like I had failed somehow. The church I was raised in implied often that some people are sick because of their sin, so as a deeply closeted gay kid I constantly wrestled with self-condemnation. The church, in general, hadn’t prepared me for this. Usually, the only time disabled people are talked about from the pulpit is either when they’re being healed in the Bible or when they’re a prop in a story, meant to make the “normal” people feel more grateful for their lives.

Then came the people at church: so many people only interacted with me to ask “how I’m feeling” and to say they were praying for me. Prayer was wonderful and fine, but when that was nearly everyone's interaction with me, it felt degrading. Like I am nothing more than an illness. I never felt like I could be honest with most of them. Extreme guilt would flood over me if I complained. I thought my new calling from God was to be a happy, disabled Christian. I would go to church and just lie to everyone. I felt so much pressure to be a good example and to not share my hurt and anger.

Fortunately, I had a therapist and a wise pastor I met with regularly who gave me permission to share my disappointment, confusion, and anger towards God and to grieve for the life I wanted. Not just about being disabled but realizing I would never be straight. Over that year my body slowly started to calm down.

Stress is a huge trigger for my Dystonia, so when I eventually learned to love and accept myself fully as a gay man, with God’s help, my body took another huge leap forward. I decided to try working out with a trainer to try to gain more control over my body and straighten out my back. Although I still can’t do some of the exercises, and resting is key for me, I gradually improved and lost 40 pounds. I also get botox injections every three months to try to weaken the muscles in my neck and shoulders. It’s about 9 to 12 shots. I’m used to it at this point but I still flinch at every shot. I eventually tried going back to work again. I had a really good experience with my employer but the tremors returned, so it didn’t work out.

Living on disability and food stamps has its own unique challenges. Being brought up in a conservative area, I don’t remember anyone saying anything positive about food stamps or the people who had to use them. I knew I needed it but I internalized that shame. I felt like I was doing something wrong every time I bought food. And if you try to eat healthy your food stamps will never make it to the end of the month. Getting on disability was so hard. I was denied disability benefits several times and it took years for me to get. Everyone who knew how this process works told me to expect that. When I would tell certain people about my frustrations they always would blame these phantom “other people” who abused the system. It was never the fault of their politicians who consistently defunded, villainized, and added roadblocks to the process. These people would gaslight me and try to explain why it had to be so hard. Meanwhile, I was broke and struggling to understand how I wasn’t disabled enough. If it wasn't for my parents' support I would have been homeless. It was infuriating and soul-crushing. None of my symptoms, doctor's notes, genetic testing, or participation in a clinical trial with NIH convinced the government. It took me hiring a lawyer (Katherine Niven) and contacting my congressman (Scott Perry) for anything to really happen. When I finally got disability pay I was shocked at how little it was - it’s basically a quarter of what I made at my last job. I’m grateful, but it’s not much. I still depend on my parent's generosity. I hate that I’m still a burden to them. I hate that being on disability means I’m basically just a burden to America, and I struggle with feeling that my dependence on others to survive/live means that I, and my opinions, matter less.

At present, I’ve made a lot of strides, and most days I feel good but if I’m being honest I think I’ve just gotten used to feeling uncomfortable. Sporadically some pain will return. My doctors have informed me my speech will never recover and could get worse. I no longer have the luxury of knowing I’ll be understood. Meeting new people is a constant roll of the dice. Some people will understand me or pretend to while others speak to me as if I’m mentally ill.

Talking to people can be a mental mind game. Imagine you’re meeting someone new and they ask “what do you do?” Do you make things awkward and tell them you’re disabled? Do you explain what happened? How much do you share? Do they understand you? Or imagine there’s a conversation you want to contribute to. Should you even bother speaking up? If they don’t understand you how many times do you keep trying to get your point across? The worst situation is when people pretend to understand you or answer your question with a ”good point”, or ”oh really”. I’ll be forced to ask ”did you understand me?” Sometimes there's a look of fear or dread in their eyes. Often the most merciful thing I can do is just say ”never mind.”

I’m taking sign language classes in case my speech gets worse. It's been a fun challenge. The classes are a bit pricey and my arm and fingers struggle with the dexterity, but I'm looking forward to learning more.

I’ve learned so much going through this. For starters, there are too many gaping holes in our society that vulnerable people fall into, and far too many people and politicians simply don't care. As a society, we villainize the poor and we believe they don't deserve nice things. This experience has opened my eyes to so many social justice issues we all need to start caring about. I’m striving to learn and understand the plight of other oppressed groups. Disability looks different for many people, so we need to stop making assumptions about one another. If I'm stressed or if I just overdo it, my back and neck can easily revert to how they were so I'm learning to make myself a priority. 

There have been various odd blessings I've begun to recognize by becoming disabled. Realizing all the privileges I used to have and still have has been humbling. I've had to lean on my faith more and recognize life just isn't fair. I’ve had to work on discovering my own self-worth. My endless amount of time used to be a curse, but I now fill it with informative podcasts and audiobooks. I’ve also found that I’m quite the artist. (Please Feel free to follow my artwork on Instagram @dorringingerich and on Facebook at Dorrin Gingerich’s Art.) I’d also love to write a memoir one day. So if you know any Editors or Ghostwriters I’d love to connect.

Something I still struggle with is owning my disability. I’ve recovered quite a bit. It’s not always obvious depending on if I’m having a good day, that I have a disability. When I’ve told people I’m disabled some people look at me as if to say “what scam is this guy pulling”? Or some people can tell right away there's something wrong with me. Once, on a first date, this guy's first words were “Well, obviously there's something wrong with you.  What is it?” I wanted to say the same thing about his wardrobe. But I held back. I think I’d just like to fit into my category easier. It’s a ridiculous, dumb, and privileged situation to be in. 

It’s really important to say this next part: I feel like most days I’ve come to terms with my disability, but I still get really sad and frustrated sometimes. I went to a conference recently. I had a wonderful time but it also devastated me. I met so many people around my age with seemingly beautiful lives - people who travel, date often, and have spare money to spend. It was really hard not to compare my life to theirs. After I returned home I went to a friend's house and just sobbed for about 10 minutes. I kept crying, I hate that this is my life, I hate how people look through me, I feel trapped, unable to progress. Grieving these things is normal and healthy so I no longer punish myself for feeling that way, and it’s happening less and less. I think that’s growth.

Why am I sharing all this now? I'm trying to own this part of my story. To remind myself how blessed I am and remember all the amazing people who got me through. This is not the life I wanted or dreamed about, but I’m trying to make the best of it. I’ve been encouraged and blessed by other people's stories but I haven't shared a lot about my own. If I continue to hold back my own story how can I be an encouragement and blessing to others?