Why I Stay Positive About My Dystonia While Others Remind Me of the Negatives

I will never forget September 17, 2015. That was the day I knew something was very, very wrong with me. I remember waking up that morning and struggling to move my legs. I was overwhelmed by charley horses surging from my calves all the way down to my toes. I took my emergency medication but, after two hours, I still hadn’t found relief.

By then, I was curled up into the fetal position, crying and paralyzed with pain. It was so intense, I couldn’t even move. My entire body was completely locked up — so much so, I was unable to uncurl my fingers. When my mom came out of her bedroom, she found me howling in agony and called 911.

Within five minutes, several first responders arrived at my house. They desperately tried to figure out how to move me from the couch without making the pain worse, but there was no way around it. Being carried from the couch to a stretcher that first day, I had no idea the same thing would recur two more times within that week alone.

After being discharged from the hospital, I made an appointment to meet with my pain doctor. I hoped he would be able to tell me what was going on. On the day of the appointment, I told him everything. I explained the sudden pain, the feeling of charley horses, the curling of my feet and toes, and the way I had to be rushed to the hospital. When I’d said all I needed to, I was nervous to hear the doctor’s response.

In hindsight, I understand why I was so nervous to hear what the doctor had to say. His response was one I hoped I’d never get. He said, “You have dystonia. If your body locks up again, you need to go to the emergency room immediately in order to break the dystonic flare. I’m sorry but I can’t treat this.”

I left his office with tears rolling down my cheeks. I tried to hold myself together because I needed to attend class later that day. I couldn’t let my diagnosis stop me from living my life.

I prepared to head out the door for class when something unusual happened. I stood up from my desk and immediately had to sit back down. The toes on my left foot began curling inwards to a point where they appeared to be touching the bottom of my foot. I knew, deep down in my gut, that I would have to go back to the emergency room.

As I was leaving, I started to limp; the charley horses were back and they coursed from my left calf to my toes. Though the pain was unbearable, I kept telling myself to keep it together. I didn’t want anyone to notice that I was biting my lip and using the wall for stability.

I called my dad and he agreed that I needed to go to the emergency room. He asked me if I was able to drive and I said yes. As I was driving, I felt muscle spasms surge through my right thigh. I rubbed it, hoping it would stop, and continued on. However, things only got worse from there.

When I turned down a side street, I was overwhelmed by the worst charley horse I’d ever felt in my life. I glanced down at my foot and saw that it had completely contorted itself. On top of the continuous charley horse, the muscle spasms were getting more intense. I pulled over as fast as I could and called my dad again.

While on the phone, my fingers curled in and locked up. My hands looked like they were in fists. My dad told me to call 911 and asked for my location. Once I hung up, I realized I was no longer able to press any buttons on my phone, so I used my elbow to hit the voice command on the steering wheel. I was able to contact 911 and, in a shaky whisper, told them where I was. A few minutes later, the paramedics arrived and carried me out of my car.

The doctors at the hospital tried a few different medication combinations but nothing seemed to help. I ended up being kept there for nine days. A few medical practitioners told me they believed the ordeal was psychological because my test results came back normal. I knew they were wrong but I couldn’t dispute the professionals.

Later on, I was transferred to a physical rehabilitation center where a team of neurologists diagnosed me with dystonia, a neurological disorder causing involuntary muscle contractions and twisting movements. I stayed there for six weeks and was transferred to two more hospitals before I was finally discharged.

After returning home, I was bounced around between three or four neurologists; all of them said my case was “too complicated.” One particular neurologist was willing to take my case but there was a three-month wait to see him. Hopeful, I bided my time by working with a pain clinic who developed a treatment plan for my diagnosis: functional dystonia.

Through my journey with dystonia, I have learned giving up is not an option. This is usually my motto I live by, and I remind myself this daily. I don’t want to give up my dreams of becoming a social worker, and even if I have to adapt my career choice, I know I can still make a difference. Dystonia doesn’t define who I am. I am learning my limitations, and living my life the best I can.

It is so hard to stay positive, when doctors keep reminding you of the negatives: “It’s all psychological… your case is too complicated… there’s nothing I can do to help you…” It is easy to give up at this point when you feel so isolated and alone. The key thing to remember is that there may be a doctor out there that will help. It may take time to find this specific specialist, but there is always hope. All you can do is stay positive in the hardest of times. It is easier said than done, but you have to stick with it.

There are so many things I wish other people would understand with my experience, or even my diagnosis. A current theme I am seeing is strangers asking me “What is wrong with you… why are you on crutches… how did you break your leg…” I get asked these questions minimum once a day. Don’t get me wrong, I am happy to spread awareness, but there is a time and place to ask me what is wrong. All I ask is for people to stop staring because I use crutches. As young children, we have been taught to not stare, point or laugh at strangers. It is interesting to see how many adults will do this as if there is nothing wrong with it.

Since being diagnosed with dystonia, there have been a couple of people who were very close to me who could only identify me as “dystonia.” One of the only things I ask is for others to see me as myself, not just a label. One of the hardest things I had to do was eliminate these individuals, even if one of them was a family member. I want to be known as who I am, not just my diagnoses. Fourteen years of complex regional pain syndrome and functional dystonia do not define me.

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