In January of 2010, I met dystonia head-on for the first time. I was going to teach at a primary school, and I remember feeling a little out of sorts when I left the house the morning—sort of as if I had a migraine aura, but amplified. As I walking into the building, I remember a parent calling out to me, “Are you okay?” Her voice was less concerned and more accusatory. I think I waved her off with “Yes, I am fine.”
I later found out that I was walking (and even driving) as erratically as I felt inside, my limbs loose and not fully under my control—and that parent assumed I was drunk. I didn’t know it at the time, but she had called the police and told the principal of the school, who called me into her office when I checked in.
I don’t remember the principal’s exact words to me that morning, but it was something to the effect of, “You don’t look like you’re feeling too good.” I replied, “I’m okay, just tired.” She suggested in a patronizing tone that I should go home and get some sleep. I wanted to protest, but she was firm, so I somehow made my way back to my car and started back home.
During the drive, I felt a terrifying panic as I tried to steer around the tight curves of the road, but my arms wouldn’t cooperate to move quickly enough and I found myself driving into a snow bank. I was fortunate that it was a relatively soft pile of snow, so I could easily back myself out. When I finally pulled into my driveway at home, I went to put on the brakes, but my legs refused to listen to my brain and my car rammed right into the garage door. I managed to put the car into park, but not without seeing the police car in my rearview window.
Gee, thanks for watching out, guys.
Struggling to understand what was happening with my body, I fought to defend myself from the accusations of driving under the influence. Convinced I instead was suffering from a debilitating medical condition, the officer sympathetically said he wanted to protect my safety as well as that of others as he temporarily took my license away. I would need medical clearance to get my license released from DMV.
That was two years ago. Two years of involuntary movements that painfully jerked the muscles in my face, head and neck, caused my arms to tremor, or made my legs do what I called the chicken dance as they struggled to come under control. Sometimes I would freeze in poses as if in a pained pantomime. Other times, I would simply lose all muscle control and fall semi-conscious. There were countless, dangerous falls in the bathtub, in store aisles and parking lots.
It has been a baffling illness that, at times, had me bed bound, in a wheelchair or in the hospital under DNF (Do Not Feed) orders, for fear I would choke when I tried to swallow. And forced me to be shuffled from doctor to doctor to doctor—each specialist offering up a different cause for this condition, which they labeled dystonia or dyskinesia.
Finally, through my own research, chronicling my symptoms and listening to my body, we determined the main cause of this movement disorder in me was autoimmune disease, itself triggered by a motor vehicle accident. Since then the challenge has been controlling and treating the disease, antiphospholipid syndrome, which has had its own ups and downs.
Sometimes I still think back to that first day in January, and the parent assuming I must have been drunk. Like dystonia activist Rogers Hartmann said in a recent post, the problem would be much easier to take care of if I had just been coming into teach little children buzzed. I could have just slept it off and woken up anew. Unfortunately, dystonia doesn’t work like that.
There are days and now weeks where I am completely symptom-free—for months, prednisone, kept it largely at bay—and I begin to hope that finally, I have this thing beat. These reprieves, thus far, have been mini remissions. However, I am easily at least 90 percent better than even five months ago, and this knowledge gives me the inspiration to keep pushing ahead toward that day when I will wake up again fully anew.