In the year and a half that we’ve been together, I’m managed to keep this part of me hidden from my love. It wasn’t a conscious decision for me to hide it from him it just turned out that way. He just happened to catch me in mostly good spell. And while I had occasional flare ups outside of his company, I had never showed signs of my movement disorder, dystonia, in front of him.
That’s not to say he didn’t know that I had dystonia and the autoimmune disease, lupus, that doctors feel is causing the dystonia. But a picture of the disease in action is worth a 1000 words. Nobody can possible understand the dramatic manifestation of this disorder until they’ve seen it for themselves.
When You Can’t Hide From the Hurt Anymore
At first it can seem like an extended, contorted yawn. When limbs are involved, it’s another story. When you can’t walk down the hallway without collapsing on the floor, when you can’t get out of bed before your body begins to scrunch up in a ball of fully flexing muscle. When the muscles around your neck and throat become so constricted, it feels like you can’t breath, and you start making choking sounds. When you get stuck like a broken record on words in a sentence, or alternately, when your words and limbs become sludge in the middle of a sentence and you can’t push any more thought out of your mouth. When the strongest man you know cannot push down on your scrunched up leg without potentially hurting you with his force, the enormity of the illness becomes crystal clear.
I never wanted him to have to see this. I never wanted him to have to become a caretaker. After years of living with my parents as caretakers, I was thrilled to have my independence back. I hadn’t had a real episode in many, many months. I was able to drive again. I moved into a beautiful apartment with my boyfriend. I started a new job I enjoyed. But…
But one day at work, I felt my body being overtaken again. My vision became distorted and my hands wouldn’t cooperate with my brain. On the drive home, I began having dystonia episodes. I had to call my parents to come pick me up from the parking lot I managed to pull over in. I went home with them to rest until my boyfriend returned from his day.
Work the next day was fine. So I was surprised when episodes popped again on me while driving. Except this time, they didn’t just disappear. With the exception of 3.5 days symptom-free thanks to the corticosteroid prednisone, my relapse has lasted more than a month now. Braving a return to work for a meeting under the harsh fluorescent lights, my remission completely reversed, and I’ve been getting steadily worse ever since then.
How Does a Relationship Endure a Relapse
My boyfriend has been a trooper, but I know I’ve been a burden. We’ve had to cancel or cut short fun plans. When he comes back from time away, he doesn’t have an energetic and excited person as his sanctuary. He has another obligation, someone he has to be on alert for at all times.
As much as he loves me, and happily is still attracted to me, he never signed up for this. He never signed up for waking up in the middle of the night so that I could go the bathroom without falling. He never signed up for taking showers with me—though sometimes that has proven to be much more fun than expected. And he definitely wasn’t counting on having to keep an eye on me while I am on the toilet, to make sure I don’t fall off mid-episode. As draining and frustrating I know it must be on his end, he’s doing an amazing job at making me feel loved and supported.
My parents, on the other hand, are of the opinion that caring for their sick child is their duty; even if that child is now knocking on the door of 36 years old. For more than three years, they were my caregivers. Yet I still felt the guilt of needing them constantly for so long. Hearing them talking about me behind closed doors, knowing they were tearing up over the uncertainty of it all.
But miraculously, I made a huge turnaround. I was stronger than I ever had been since I was a kid. I was riding miles on bikes, hiking regularly, breaking my own records for pull-ups, going on long trips and performing my music in public again. I discovered my passion for yoga. I found love again. I was able to see a promising future again.
Because of that, I have faith that this relapse too will end. I don’t know when, but I will not accept any other outcome. The uncertainty of how long this relapse will last weighs on both of our minds. We both want to see me running around again. I am on the cusp of getting a sports yoga teaching certification, and I have a place to teach it. We have fall hikes to go on, birthday parties to attend and day trips to take. Sadly, Halloween events are out of the picture. Yet I have even more tools in my holistic toolbox to heal this time around, and I’m not afraid to use them. I will stay strong. I will continue to believe in my innate capacity to heal.
Thank you for sharing your story. As a Dystonia sufferer I can relate to what you are going thru. Thank you for bringing awareness too!!
Tiffany, thanks so much for reading this. It helps to know others can relate to what I’m going through. And yes, the greater awareness about this debilitating disorder of dystonia, the better!
Cathy Testa says
You are an incredible writer. Thank you for sharing your story. I hope things will improve with your condition soon. Cathy
Thanks so much for reading and your kind words, Cathy! I look forward to trading happier stories with you soon
My Aunt who is a yoga teacher sent this to me. I was diagnosed with Generalized Dystonia on Oct. 4th 2013 I feel your pain and it has been a long hard ride. Your story has been very inspirational and I can relate to everything you spoke about. I still have yet to get real good days but I look forward to getting to that point Thank you
Thank you so much for commenting. It truly means a lot to me. Having lived with dystonia for several years now, if you need any support or questions answered, feel free to stay in touch! Wishing some really good days in your near future!