It is my fervent belief that yoga saved me from a life of chronic illness, but when my neurologist at the time, Dr. Purcell, suggested it, I didn’t have any idea of the healing powers that yoga offered. I was just so desperate to be well that I would have done anything that might actually help. It was only later that I came to understand why yoga healed me the way that it did.
It shocked me at the time that my nausea went away almost instantly after starting yoga classes. I couldn’t account for it, but I was grateful for it beyond words. The constant year-long nausea and vomiting had been the worst part of my illness, by far. After that, I quickly re-gained the strength, stamina and motivation that had abandoned me, and I began to live again.
It took years to obtain the diagnosis that eventually led to a coherent treatment plan. It wasn’t until well after I recovered that the label “spasmodic torticollis” came into my life. I had to google it to understand exactly what it described, having never heard of it before. It’s such an unusual and odd sounding term that when people ask for my diagnosis and I give it to them, they usually give me a blank look and say, “What was that again?”
In his book, Healing Yoga: Proven Postures to Treat Twenty Common Ailments—from Backache to Bone Loss, Shoulder Pain to Bunions, and More, Loren Fishman, MD has a fortuitous little blurb about my condition. He writes, “A third condition that occurs in the neck isn’t as common, but if you’ve had it or even if you’ve seen it on someone else, you won’t forget it. It’s called spastic torticollis—literally spasmodic turning of the neck. It happens when one group of muscles gets really tight and turns the neck. Sometimes the head turns in jerking motions, and sometimes it turns and stays in an unnatural place.” (Fishman 122-123).
For some time after recovering from the worst of my illness, I had the jerking motions Dr. Fishman describes above. My head would involuntarily turn to the right over and over. It was embarrassing. During the day, when I was in public, I would fight the head turning with everything that I had, and completely exhaust myself. At home, when I was alone, I would relax and let my head do what it would, leading to half watched TV shows and great difficulty in keeping my place when reading. Fishman writes, “This is a condition so painful and so intransigent that you may need a yoga therapist or a doctor who can give an injection that will alleviate it at least temporarily” (Fishman 122-123).
Dr. Fishman’s assertion that spasmodic torticollis is extremely painful is, I think, the reason that my diagnosis and treatment took so incredibly long to obtain. I don’t have much pain at all. I have the odd headache, and my neck and shoulders tend to be a little bit sore, but I really don’t have significant pain. In the very beginning of my illness, my ears and my scalp on the left side of my head hurt, making it difficult to sleep or wear a headset, but that pain went away fairly quickly.
Doctors kept asking me about pain, and when I said I didn’t have much, they immediately dismissed me as a “hysterical woman” trying to get attention for something that wasn’t really very bad. I would like to point out that pain is not the only thing that makes an illness terrible. In fact, I probably would have preferred pain to the ongoing nausea and vomiting that I endured for a year and a half. At least people that are in pain can eat, and they don’t starve to death.
However, Dr. Fishman is right about the injections. Every three months I go in to see my current neurologist, Dr. Matich, who is wonderful and warm and helpful, and she uses a machine to measure my involuntary muscle contractions. She does this by inserting a probe into each affected muscle and listening to the sounds they create through a special machine. Sometimes my muscles whoosh and growl like storms. Dr. Matich then injects botox into the extra loud muscles to help them relax, and I can hear the muscle-storms grow calm. Over time, this has been a helpful addition to my care, but I honestly don’t think it’s nearly as helpful as yoga.
In Healing Yoga, Dr. Fishman describes how “Laboratory and clinical studies have confirmed that pain from upper cervical joints and muscles can be referred to the head” (Fishman, 121). I think this was exactly the complicating factor in my own illness. I believe that what happened to me goes something like this: the whiplash injury that I endured caused the upper cervical muscles in my neck to go into spasm, which irritated muscles and nerves in my head, leading to migraine symptoms, but no pain. I had the visual disturbance, nausea, vomiting and cognition problems that go with severe migraine, but the pain never showed up, which confused everyone—including me.
If he had known about me and my illness, I believe that Dr. Fishman would have backed up my neurologist’s suggestion that I treat my symptoms with yoga. Dr. Fishman writes, “Appropriate yoga is good for almost anything that ails the neck and for pain referred from the neck to the head. . . It improves suppleness of the neck muscles and increases the versatility of the joints so they can move more easily in many different ways. It refines the coordination of the various muscle groups, so muscles aren’t pulling against each other with such ferocity” (Fishman, 123). I believe that these benefits are part of the reason that I began to feel much better quickly after beginning my yoga practice. With my neck muscles in spasm, I needed something to interrupt the process of pulling muscles irritating the tissues in my head, and yoga miraculously did that for me.
However, I think there was another contributing factor. I think that the muscles, nerves, and other tissues in my neck and my head were terribly inflamed by the whiplash injury, at least partially causing the migraine symptoms. Multiple studies have shown that inflammation is a leading factor in many of the chronic illnesses that people suffer from, such as fibromyalgia and chronic back pain. Treatments for pain often focus on decreasing inflammation using NSAIDs (non-steroidal anti-inflammatories), such as over the counter ibuprofen, or stronger prescription versions, like Naprosyn. Many people, including myself, take a daily turmeric pill, which is a spice used in some forms of cooking, because it’s been shown to have anti-inflammatory qualities.
I didn’t know it at the time that I started my yoga practice, but yoga decreases inflammation too. Dr. Fishman writes, “We physicians can’t do much apart from medication for swelling of joints; your body can do more by itself, using a molecule called PGC-1alpha. This is a potent endogenous anti-inflammatory that reduces swelling anywhere it occurs in the human body. Gentle activities such as yoga and tai chi, and especially yoga done for long periods of time, encourage the body to release this miraculous substance from your muscles” (Fishman, 122). The joints in my neck were certainly inflamed after the traumatic whiplash injury that I suffered, and I believe that getting involved in yoga significantly helped to reduce that swelling through the release of PGC-1alpha. How miraculous!
Because of its anti-inflammatory effect, I believe that yoga should be a frontline treatment for any physical ailment that is caused by inflammation. Can you imagine the wellness that would result if doctors would prescribe yoga for arthritis, fibromyalgia, back pain, and any of the other ailments that they usually prescribe pain medication for? I truly believe that the world would be a much healthier and happier place.
Speaking of happiness, I’d like to say a little about how chronic illness affects mood. Dr. Fishman writes, “. . .chronic pain does more than cause people to lose days of work. It’s depressing. It produces anxiety. It makes life so hard that sometimes it doesn’t feel worth living. I think it’s extremely important to address pain that could be or is becoming chronic and end it as soon as possible” (Fishman, 86). While Dr. Fishman talks about chronic pain being depressing, I would like to add that chronic illness is depressing whether pain is involved or not. Before my injury and subsequent illness in 2011, I was the happiest I’d ever been. I had found a group of people where I seemed to fit in completely for the first time in my life. I was active and social and enjoying every minute of it. Then, the whiplash injury happened, and my happy life became very small and extremely unpleasant.
As I sought help, doctors kept telling me that my symptoms were the result of anxiety, and they kept pointing out how anxious I was in the appointments, and how sad and alone I was. I argued that I was anxious because I kept seeking help from professionals who dismissed my symptoms, and I was depressed because I was terribly ill and unable to do the things that made my previous life so wonderful. But the doctors continued to insist that my symptoms were the result of anxiety and depression, not the other way around. I found this incredibly frustrating and demeaning, and it’s refreshing to have Dr. Fishman acknowledge that chronic illness leads to a life that doesn’t feel worth living, because it absolutely does.
However, it appears that the psychological effects of chronic pain and illness are even worse than I previously thought. Dr. Fishman writes, “. . . there is a less-recognized reason: chronic pain that lasts more than a year seems to have negative effects that last much longer. A study done at Northwestern University shows that a year of chronic back pain actually shrinks the gray matter in the brain by as much as 11 percent, the equivalent of ten to twenty years of normal aging, and that loss is directly related to the duration of the pain” (Fishman, 86). Ten to twenty years of normal aging caused by one year of chronic illness! Honestly, that blows my mind, but I’ve seen it happen.
In my own case, after my illness went into remission, and I got treatment that made sense, it took a couple more years for me to be able to focus on reading a book, or to be able to write the way that I had prior to getting sick. I’m sure that recovering from brain atrophy was one of the reasons that it took me almost 10 years to get my book project together.
My grandmother became ill within the past few years. Within a year of getting sick, she went from a vibrant older woman who managed a home of her own and loved to sew quilts, to a woman who needed 24-hour care and couldn’t recognize her own grandchildren. Now she’s living in a nursing home that specializes in dementia care, and I’m certain that her illness was a major contributing factor to her mental decline.
Truly, we must take chronic illness and chronic pain seriously. It not only decreases life satisfaction, causes anxiety and depression, it actually causes brain damage. The good news is that in addition to other wonderful effects we’ve already discussed, yoga can help with the terrible mood and brain problems brought on by illness. Fishman writes, “Clinical trials confirm that yoga helps reduce distress and depression and promotes a sense of calm well-being” (Fishman, 191). He also explains that yoga is being used to treat PTSD. “The Naval Medical Center in San Diego and other military VA hospitals are offering yoga to help Marines, soldiers, sailors and others wounded in Iraq and Afghanistan who are suffering from post-traumatic stress disorder. Preliminary military studies have found that the calming effect of yoga can assist PTSD patients in dealing with hypervigilance, flashbacks, depression and anxiety” (Fishman, 201). Honestly, I think yoga is the cure-all that people are looking for, but it is under-prescribed and under-utilized.
Please spread the word about the healing effects of yoga. Even though it’s more work than taking a pill, I think it’s more than worth the effort. It saved my life. It could save yours too. Dr. Fishman lists multiple ailments that he has personally and effectively treated with yoga, including: back pain (both neurological and musculoskeletal), rotator cuff syndrome, headache, weight control, bone health (osteoporosis), insomnia, scoliosis, premenstrual syndrome, depression, restless leg syndrome, bunion, and plantar fasciitis. While this is an extensive list, I’m willing to bet that there are many more conditions that would respond positively to treatment through yoga, and I encourage you to give it a try.
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.