A while ago I said I would write about the physical issues I have dealt with over the years, and I have struggled with the possibility of writing about them. In fact, I had no idea how difficult it is for me to be honest about this particular part of my existence until I seriously considered writing about it here. Discussing my mental issues was somehow easier—as if those are not my fault but somehow my body’s physical failings are. But I joined an online support group recently, and realized how important it is to be candid about things and how cathartic it can be.
First, let’s discuss the definitive issues. I’ve had problems with digestion my whole life, and had my gallbladder removed when I was 17. By the time I had surgery to remove it, I was consuming maybe 1000 calories a day because every single thing I ate made me ill. I also had a wicked fast metabolism as a youngster, so I spent part of my teenage years as a cold, tired, malnourished waif who so desperately wanted to eat food that I would sometimes gorge myself knowing full well that I would spend a day and a half afterward in agony. I mostly subsisted on beef broth with egg noodles. And doctor pepper and cigarettes, of course, because that’s what all teenagers need. Parents, take heed… don’t let your teenagers do whatever they want. They will make terrible choices.
Perhaps the biggest monster in my life is a neurological disorder I have called Cervical Dystonia (CD) or Spasmodic Torticollis (ST). It is considered a movement disorder, in the same category as Parkinson’s and Huntington’s. Some sufferers experience painful twitching in addition to severe muscle spasms. I don’t get the twitching very often, but my muscle spasms are sustained whereas sometimes they are intermittent. Mine have not gone away, ever.
The disorder manifests uniquely in just about every patient. Mine was initially diagnosed when I was 18 years old and the Sternocleidomastoid (SCM) muscle on the right side of my neck went into a severe spasm and seized. The SCM has been seized for so long that the muscle has shortened and is now made up of a lot of scar tissue. It will never be a normal muscle again. And twelve years of little relief suggests that my brain will not cool its jets and ease up anytime soon, either. So I live with this disorder, that has no cure, and mitigate its symptoms to the best of my ability.
CD can be caused by a variety of factors, and its onset may be triggered by trauma or stress or seemingly nothing at all. In my case, I was born with something called Wry Neck. I was born breech, meaning butt first, and the umbilical cord was wrapped around my neck. Apparently, in the early 1980s, c-sections were not common enough for my mother’s doctor to go ahead and perform one instead of yanking me down the birth canal with the umbilical cord wrapped around my delicate fetus neck. Yay, medicine!
I know it was the 80s and not the 30s, but I imagine a cocky white dude smoking a cigarette and yanking on a baby foot extending from my mom’s vagina. His voice sounds like Troy McClure’s. Hi, I’m Troy McClure. You might remember me from your extremely traumatic birth!
So I sustained damage to my neck, and they gave my mother the option to put me through physical therapy or allow them to perform surgery which may or may not correct the problem and could have resulted in further damage (like brachial plexus injury).
Not being super pumped at the idea of someone performing surgery on her newborn’s neck, my mom opted for physical therapy. For most of my life, my neck was okay. I tended to favor the right side—especially when I was tired—but we figured it was just residual from the infancy, and didn’t suspect it had any major implications.
When I was 18, my living circumstances were less than ideal. I didn’t get a lot of sleep or much to eat and I technically did not have a place to live. So I slept on couches, in cars, wherever I could find a warm place to be. One of the common places I landed for the night was in a friend-of-a-friend’s basement in a pitch black bedroom constructed of plywood. There was almost definitely black mold and I probably ingested on average 1.3 spiders a night.
In this windowless room, I slept on a very old, very worn pullout couch. The ancient mattress offered little support and the bed bowed up in the middle so your feet and head were lower than your torso. You could feel every metal bar and cross-support on the frame. My only pillow was a dingy scrap of fabric stuffed with worn, lumpy pieces of cotton that I assume was as grayed as the threadbare fabric covering it.
As awful as it all sounds now, having a warm and safe place to sleep was a huge blessing then, even if it was uncomfortable. I had another friend I could stay with and sleeping conditions were much better there, but she had young siblings and my serving job wasn’t always conducive to getting there at a decent hour. But when I managed to get there, and I got to sleep on the Teenage Mutant Ninja Turtles sheets on a mattress on the floor, it was glorious.
My serving job was also a blessing and a curse. It offered me the possibility of food—stolen french fries and bites of soup and leftovers if the manager on duty was feeling generous—but I also had to carry huge trays loaded with plates of food that I couldn’t afford to eat, and it was hard on my neck.
I started getting headaches, and muscle aches, and generally feeling terrible. As one of America’s working poor, I took over-the-counter pills and pushed through, ignoring the problem for a few months. When I finally went to the doctor, she diagnosed me but gave me little direction on how to address the problem. I think maybe she gave me a prescription for Vicodin with no refills. An acute, short-sighted fix for a long-term problem. Given that I was a medicaid patient at the time, it made sense. Treat the most acute symptoms and send the patient packing. My medicaid coverage ran out shortly thereafter, and I spent the next several years trying to mitigate the symptoms to the best of my ability, bouncing around to poor folks’ clinics and using the emergency room a couple of times as a last resort if my symptoms were unbearable.
Then I went blind in my left eye in 2007. I had been playing a lot of rummy online (not for money, I was just addicted to playing rummy) and one evening the vision in my left eye seemed blurry. I figured it was just from too much staring at a glowing screen, so I went to bed. And by the next morning I was blind in that eye.
Loss of vision? Muscle spasms? Multiple Sclerosis!
That was the first thought. Except I did not present definitively with MS. I did have a couple of small spots on my brain, and vision loss is a hallmark, especially when coupled with muscular issues. But I was not having trouble walking or with balance. So I got bounced around from doctor to doctor, wracking up all sorts of medical bills, until I eventually gave up for a while.
In the past seven and a half years, I have seen one opthamologist, one neurosurgeon, one neuro opthamologist, a rheumatologist, a physical therapist, a physical medicine and rehabilitation specialist, and four neurologists. Plus I have been to one pain clinic, gone through physical therapy, and have had five primary care physicians. Our health care system is the best.*
Ultimately, what we know is that I have autoimmune markers in my blood. I have lesions on my brain. And once in a while I get weird autoimmune symptoms where it seems my body is giving itself the finger. I have had shingles, pleurisy, facial rashes, body rashes, body temperature spikes and valleys, vertigo, sciatica, an inexplicable drooping eyelid, and even a brief period of sustained arrhythmia. I get numbness and tingling in my limbs, spasticity, restless legs, migraines with aura, spasms throughout the muscles in my head/neck/shoulders, and the left side of my body seems particularly unhappy at having to exist. Oh, and my body rejected two of its own teeth in recent years. You read that right. I have had to have two of my own fucking teeth pulled because my body cannot get its act together.
The dystonia has become progressively worse as I have aged. I started aggressively seeking treatment for it last year, when I finally had stable health insurance for the first time. I have used a combination of chiropractic care and massage therapy over the years to help me maintain the ability to move and at least function. There is no pain quite like dystonia, especially when it is at its worst. The support group I recently joined has several women, many of them mothers. All of these women agree that dystonia pain is worse than childbirth, which is our cultural measurement of the worst pain imaginable. They all agree that the pain is not only more severe, but one of the perks of childbirth is that there is an end in sight. You can bear it in part due to the knowledge that it will be over at some point. The same is not true of dystonia.
Last year, I started receiving injections of Botox into muscle groups in my head, neck, and shoulders. This is the second-to-last stop for folks with CD. The final hope is deep brain stimulation, which I assume to be about as pleasant as it sounds. Sadly, this is the best option for some CD sufferers because it is the only thing that touches their symptoms.
So far, Botox has had mixed results for me. The first round impacted my swallowing muscles, so I choked every time I ate or drank anything for a couple of weeks afterward. Imagine something go down the “wrong pipe” constantly. I then contracted mild pneumonia from all the food and liquid I inhaled. On the second round, we managed to move the injection slightly so that I would not choke as much, but it also impacted the therapeutic effects. Basically, these injections are an art form as much as they are a science. The doctor sticks a teflon coated needle into your muscles and digs around until she sees electrical activity on the screen via the diodes that you are hooked up to, and then she injects a portion of the medicine. It is imperfect. It is painful. And it is expensive. I am lucky to be able to afford it. I am lucky that my condition isn’t worse than it is.
I was registered as a disabled student at the university where I obtained my bachelor’s degree because there are days when I am literally incapacitated. Nowadays I have a potent cocktail of muscle relaxers and narcotic pain medication at my disposal, which is a double edged sword. While it is nice to be able to dull the pain slightly so that I can at least function, typically that comes at a cost—pain begets pain. Pushing results in a worsening of the problem. People with similar disorders and diseases that are sometimes characterized by “flares” can relate to this. It is a constant balancing act. And if you are plagued by the nagging desire to just be normal, it is exponentially worse. I like to act like I am just like everyone else (whatever that even means) and have no limitations.
The only person I have ever been entirely honest with about all of my health issues is my mother. I struggle to be upfront about it in part because I fear that it makes people uncomfortable, and also because it terrifies me. I am in pain 100 percent of the time, and the delightful grab-bag of other unpredictable symptoms scares the living shit out of me.
Will I go blind again? WHO KNOWS!
Will the numbness and inability to grab anything with my hand that comes out of nowhere definitely subside after a while? ANYBODY’S GUESS!
Will I wake up in the middle of the night tonight with spasticity in my legs? MAYBE!
I had to switch primary care physicians again last fall because of changes to my insurance, but I expect to stay with him for as long as I possibly can. He is seemingly a great advocate. At his behest, I will start to see a new neurologist sometime in the coming weeks. I was already scheduled for another MRI this spring. Although I am terribly afraid of my own health, I’m hopeful. And matter how awful my bad days get or how much I might wish I would just cease to exist sometimes to make the pain go away, that persistent hope that just won’t burn out. It flickers, it dims, and there are days when it emits almost no light… but still, it remains. I think that’s what they call the human spirit.
*Despite working like a dog for all of my adult life, I have only had a “real” job that offers me steady insurance for just shy of a year. My previous position was with a municipality that essentially exploited me for a project that it had severely under-resourced and understaffed. That is another rant for another time.