In 2011 a severe neck injury left me incapacitated. Not with pain as most people expect from neck injuries, but with an illness with all of the symptoms of a severe migraine, but without the pain. I couldn’t hold any food down, eating was revolting, my vision was often blurred or doubled, and my thought process was so terribly impaired that I often couldn’t make simple decisions, like whether to turn right or left. This went on for over a year-and-a-half without explanation or relief, until an inspired neurologist suggested that I begin practicing yoga, and my healing ensued. I maintain that yoga saved my life.
Through a lot of hard work and time, I’ve healed to the point that I live my life fairly normally. Eating is enjoyable again, and I can keep my food down. I love my body in a completely new and different way after realizing that having a few curves means that I’m healthy enough to eat the delicious food around me, which sustains me and feeds my curious mind. Working isn’t a problem because my thought process and ability to make decisions has been restored, and while the aging process has led me to need reading glasses for close work, my vision is normal again.
However, there are some frustrating and somewhat embarrassing chronic problems that I deal with every day. The most visible is the fact that the injury to my neck distorts my face a little bit. Probably most people think that it’s just how my face was made, but whenever I look in the mirror, and especially when I see myself on film, I cringe a little bit. While I used to have even features, post injury, the lower half of my face pulls to the right, which distorts my mouth and gives me a slightly lopsided appearance. I do my best to love my face anyway, and thank my body for healing to the point that I can live my life normally again, but I have to admit that it rankles some that my face bears the mark of my illness so clearly for all to see.
The worst of the chronic symptoms left behind by my injury and illness plays out in my sleep. The stress on the muscles of my face and jaw cause clenching, and I have to wear a mouth guard. Still, I wake up many mornings with an aching face and jaw. Yet, it’s something else that plagues my rest.
It started to happen just as the nausea, vomiting, thought process and vision problems began to subside; a strange, involuntary pulling in my neck muscles that turned my head to the right, back, and to the right again, like a tic. It was humiliating when the women who sat behind me at work noticed. I could hear them talking about it behind my back. One even ventured as far as to ask me if I was OK when I was having a particularly difficult pulling episode. I simply said I was fine. A lot of the time, the pulling made me want to close my eyes. It was difficult to keep them open, and when I was alone, I would sometimes sit for hours with my eyes closed, allowing my head to move how it wanted, instead of straining to keep it straight to avoid the humiliation of people staring and whispering.
In addition to the pulling and tension, which I have learned to push back against so most people don’t notice, there is a sensation of moving and crawling under the skin of my upper back and neck. This is what keeps me awake at night. Somehow the pressure of my pillow against my head, neck and upper back makes the crawling feeling worse. Often I sleep without a pillow for less surface area affected by the pressure. Sometimes I end up laying on the floor instead. A hard surface means an even smaller area of pressure. Sometimes, I just don’t sleep.
Working with my neurologist, I started to receive botox injections into the muscles of my neck and upper back every three months in order to get the them to relax out of their constant state of contraction, known as dystonia. The injection process makes me sweat. My amazing and gentle neurologist apologizes as she inserts a probe into each of the muscles of my neck and upper back so that she can listen to the level of contraction on a machine. Don’t ask me how this works, but it does. Sometimes my dystonic muscles sound like thunderstorms.
The decibel level of my muscle storms helps my neurologist determine the amount of botox to inject. During the three month interval between injections, the dystonia storms decrease for a time, and then increase again. I do my best to maintain my physical inner stillness through yoga, chiropractic, meditation (the crawling sensations make this incredibly difficult), and massage. All of these treatments help. Together, they keep me sleeping just enough.
This past month, the appointment for my botox injections was canceled due to COVID-19, and since then my muscle storms have been extra loud. I’ve been spending hours of my nights on the floor, and awake. While I’m tired and uncomfortable, I count my blessings because my patients tell me stories that are much worse.
I’m working with a man who has severe back pain, to the point that he struggles to get out of bed, can’t function, and is desperately depressed. His pathway to obtaining the surgery he needs to be able to function is blocked by COVID-19. I’m worried about his ability to wait it out.
Another woman I work with has lupus, which is controlled via the medication hydroxychloriquine. The scientifically unfounded assertions that this medicine can be used to treat COVID-19 have resulted in a shortage so severe that she can’t get her prescription filled for the chronic condition that it is actually intended for. When she told me this, my mouth dropped open in consternation. Untreated lupus has severe medical consequences.
The world is currently held in the clutches of an acute and life threatening virus, and I understand that my appointment for the botox injections that help me to live a more comfortable life were canceled to prevent exposure to both myself and my neurologist. I’ll be OK. However, I question the compassion of a world in which people take a life-sustaining medication away from someone who is uses it for its intended purpose, and redirects it based on dubious, non-medical assertions.
I also question a medical system that makes the cruel decision to keep a man in debilitating pain for months without treatment, relegating him to an existence of despair. It seems to me that COVID-19 can be dealt with appropriately, and still create space for him to receive the help that he needs. Our therapy appointments leave me feeling powerless, but I know my distress can’t even touch what he is going through.
My thoughts are with the people with chronic syndromes who are being left behind right now. Please don’t lose hope. I still see you, and I hope that in writing this piece others will see you too. This situation can’t last forever, and I know that the hearts of the world, and the medical system, will re-open to you soon. In the meantime, I suggest you try some online yoga classes, get outside for fresh air, do whatever you can to interact with your loved ones, and be gentle to yourself about the struggle we’re going through communally. When in doubt, I always recommend increasing self care, because you deserve it.