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.
Like the rest of my personality and life, my illness was outside of the proverbial box, and I had difficulty explaining what had happened to me when I was seeking help from medical professionals. Part of the difficulty was due to the cognitive effects of the injury that I sustained, and another part was due to the pure strangeness of the circumstance. Whenever I said that I had a whiplash injury, people would assume that I had been in a car accident. When I said that I’d sustained the injury while dancing, people would dismiss me as overreacting to a minor injury. I actually had several medical professionals laugh.
Since I’m writing this blog in support of the book I’m writing, I’m Sick, Not Crazy: How I Took Control of My Health When Western Medicine Told Me it Was All in My Head, I think it’s important that you understand the injury that kicked off my illness, so here’s the description from chapter one of my book (names have been changed to protect the not-so-innocent):
The night it happened, Michael, who organized the events, asked me to dance. I was a little bit surprised. My relationship with Michael had been awkward, for reasons that I didn’t fully understand, and for months he hadn’t asked to dance with me. He was highly experienced, so he was fun and exciting to dance with, throwing in moves that I hadn’t been led into before. Our dance started out fun and easy, and I relaxed into his practiced lead. Then, to my complete surprise and chagrin, he grabbed my ribcage under my armpits with both his hands, and forcibly flung my upper body backward into a dip.
As my spine curved as deeply as my body would allow, my head flung in an arc. Having trusted Michael to lead me with respect, I wasn’t guarding myself, so my body was warm and pliable. Mid-forced-dip, I did my best to flex my muscles and protect my body, but it was too late. Michael abruptly pulled my body back up and out of the backbend. Centrifugal force had its way, and my head continued backward as the rest of me was pulled upward, and my neck made a loud CRACK sound and stretched out from my shoulders like a slinky with a bowling ball stuck on the end. Something at the base of my skull, on the left-hand side, seemed to become loose and squishy. Wow, I thought, that felt really weird. After what seemed like forever, my head caught back up with my body and I stood upright in front Michael, dazed.
He grinned and said, “I know you like it rough like that.”
I frowned at him. He didn’t seem to notice my distress at all, and just kept leading with a self-satisfied look on his face. Shocked into silence, I unenthusiastically kept following his lead, waiting for the song to end so I could get away without a public confrontation. When the song ended, and Michael let me go, I was relieved. I sat down, shaken; taking stock of my body. Rolling my neck from side to side, checking the range of motion, and moving my limbs around told me that my neck wasn’t broken. I told myself that meant I was OK, and I got up and got back into the dance.
In the morning, concerned for my own wellbeing after the dipping incident of the night before, I went to Urgent Care. The doctor took X-Rays and told me that everything looked fine. No lasting damage. Relieved that it wasn’t more serious, I resolved not to dance with Michael anymore, and mentally planned to get back into my regular routine.
That night, I woke up a few hours after falling asleep and vomited until the sun came up. Over the next few weeks, things steadily got worse. There were days where I felt mostly normal, and days when I felt like I had been filled with poison and couldn’t see or think straight, and the worst was the nights spent on the bathroom floor vomiting into the toilet. Never having sustained an injury that didn’t readily heal before, I thought that if I waited it out, I would start to feel better.
With the attitude that this was all quite temporary, but that I should get looked at anyway, I decided to go and see my own primary care physician, Dr. Benavides, and explained to her the injury that I had sustained and how I was having so many problems afterward. I felt certain that she would know what to do. All of my experience of the medical system before this had shown that they would be able to help me when things got rough.
When I had pneumonia and was so weak that I couldn’t make a fist, there were antibiotics. When I had labyrinthitis and was so dizzy that I had to crawl back and forth from bed to the bathroom until it cleared up, the doctors had known what it was and what to do. I had even been hospitalized a couple of times, but the doctors had been able to diagnose and treat my symptoms effectively. In my mind, I wouldn’t be alive if it weren’t for Western medicine.
Dr. Benavides listened to my story and then had me put my arms out straight ahead of me and resist her while she pushed down. She said that it seemed that my body was stable, and she wanted me to engage in physical therapy. She made the referral and I started seeing David, a physical therapist, a couple of times per week. He was tall and thin, with the coolest hands I’ve ever encountered, which felt delicious when he worked on my neck. The poor man spent an inordinate amount of time working in my armpit, and he kept telling me to place my hands on either side of open doorways and then stretch my arms open against them to open up my chest. He said, “I don’t think you could do too much of that.” I did the exercises he prescribed religiously, but things only got worse.
My buttocks were extremely sore for several weeks, to the point that I had to buy a cushion for my seat at work and sitting down after standing was so painful that it I groaned. I started to have a sensation of strangling across the front of my neck. It felt like I was slowly being garroted all of the time, and sometimes I felt I could hardly breathe. There was numbness and tingling in my forearms and pins and needles in the back of my neck. My head felt unstable on my neck like my muscles were suddenly too weak to hold it up. I was frightened.From I’m Sick, Not Crazy by Jennifer James
Things only deteriorated from there. It’s still not clear exactly what happened inside of my body, although I have some theories. Diagnoses ranged from brain cancer to occipital neuralgia to multiple sclerosis as I went through multiple medical tests to try to find out what was wrong with me and how to treat the problem. The testing process was traumatic, and didn’t ever give a definitive diagnosis. Eventually, I had to accept that my body was never going to be quite the same, and start looking for ways to minimize the impact of the injury on my life, and maximize my ability to live.
As it turned out, Western Medicine didn’t have the answers I needed, and it wasn’t until an inspired neurologist suggested that I start practicing yoga that I actually began to heal. My book describes the descent into illness, and how I managed to pull myself out of the hole through alternative treatments. I believe that those of us with outside of the box illnesses don’t have to rely on a medical system that doesn’t know what to do with us, and often blames us for what we are going through. We can take control of our own healing and move toward wellness through multiple avenues. It can take some trial and error to find what works for you, but I encourage you to explore, and yoga is a great place to start, especially for physical injuries.
Every year in January, I get an MRI of my brain. This has been going on for 9 years now, so it’s not really a big deal to me, and I don’t expect that I’m going to get bad news anymore. It takes about a half an hour of being in the MRI machine, which doesn’t freak me out as long as I keep my eyes closed. I learned my lesson quick on that account when I opened my eyes during one of my early scans and saw the top of the tube right in front of my face, and nearly went into a claustrophobia panic. For the first twenty minutes of the scan, I just lay in the tube and try not to be deafened by the cacophonous clacking of the magnets, and then they pull me out of the tube and inject a contrast solution and put me back into the tube for another 10 minutes. The purpose of these scans is to make sure that a spot they found in my brain during my 2011 illness doesn’t change. As long as it doesn’t change, they tell me that they just want to let it be. I do my best to trust that they won’t ever have to do anything more invasive to my brain.
This year, I scheduled my yearly brain scan in a new location thinking that it would be more convenient for me. Getting ready for an MRI is kind of like going through security at the airport in that they are quite concerned about metals of any kind on your person. They ask if you’ve ever been exposed to shrapnel, if you have any metal implants of any sort, and then they make you strip and get into a hospital gown just in case. I hope they never start doing that last part at the airport.
Arms wrapped around myself to ward off the chill of walking around in a hospital gown, I got into the machine with the help of the MRI tech and the nurse, and was prepared for it to be the same routine as every year for the last nine years, but this time, when the tech pulled me out of the tube to do the contrast injection, it was quite different. Since I have an aversion to needles, I looked away as he prepped me by wrapping a tourniquet around my upper arm and told me to make a fist. Then he told me that there would be a slight sting, and I prepared myself for the usual injection pain, but this time it was so much worse that I started to sweat and got woozy. It felt like the vein in my right arm was going to explode.
I told the tech, “Wow. That hurts a lot more than usual, and it’s making me feel faint.”
He said,”Oh, don’t worry. That’s just the pressure of the contrast against the walls of your vein.”
Trying to take deep breaths against the pain and wooziness, I said, “I’ve had this done a bunch of times and it never felt like that before.” I didn’t want to say it, but I felt like he had the needle in wrong.
His response was, “I’ll just do it as slow as possible for you.”
Um no. “Actually,” I said, “please finish as quickly as you can. I need to get this over with or I’m going to pass out. I have a history of doing that.” This is true. I’ve always been squeamish around medical stuff, but due to my protracted illness in 2011, my medical trauma has made my squeamishness exponentially worse.
He finished the injection, and said, “Never had that response before, huh?”
“No,” I said, taking deep breaths and trying to mentally be somewhere else . . . somewhere cool, like Scotland.
With that, he put me back in the MRI tube to complete the scan.
Now, it’s entirely possible that I just had a bad reaction to the injection, but the tech’s assumption that it was my problem, and not anything that he might be doing wrong was triggering for me. I’ve had blood draws before that were terribly painful and left bruises because the phlebotomist made a mistake, so I know that it’s within the realm of possibility that the extreme pain of the injection this time wasn’t just my own reaction, especially since this is the ninth time I’ve done it, and I’ve never had a problem before.
The reason that I bring this up is that one of the main premises of my book, I’m Sick, Not Crazy, is that the medical system needs a huge compassion overhaul. During my 2011 illness, I was shocked by the number of times I was told that the problems I was having were likely “just anxiety.” They definitely were not due to anxiety. It’s true that I was terribly afraid about the awful and unexplained symptoms I was having, but I knew that they were due to a neck injury I’d sustained. It took months to get any doctors to listen to that explanation.
I went from doctor to doctor without any relief, and a huge increase in stress and sickness. Eventually, I came to a frightening conclusion. I believe that there is an entrenched culture in the medical system of blaming the patient when the doctor doesn’t know what the problem is. I also believe that this bias toward blaming the patient is a major barrier between patients and the diagnoses and treatments that they need. My hope is to spread the word that a small increase in compassion and the ability to listen to what patients are saying would create a huge shift in the wellness of the community. I hope that you’ll join me in the work to spread this message.