I stopped believing in souls strapped to a gurney in a recovery room, alone, coming back to myself after a seizure. It’s easy to not be you anymore in those moments of suspension. You is a fragmented idea, a shivering collection of colored shards that eventually you must arrange into a frame again. Until the next time, when the colors rain down again in bright lights against your vision.
I vividly recall the first time I read neuropsychologist Paul Brok’s book where he wrote, “When we see the brain we realize that we are, at one level, no more than meat; and, on another, no more than fiction.”
Yes. I thought, that’s it. We’re story telling meat. There is a bit of freedom in that. Every time the frame falls, if there is a bit of me that I didn’t quite get right I can discard it as I try to get closer to the ideal I present. I can carpenter a narrative I can get along with.
But when I was first waking from that seizure I had not read Broks, nor Oliver Sacks, or any of the other numerous books and papers on neuroscience that have since convinced me of my deep humanity and-for lack of a better word-sanity.
I was confused and small and scared and a lot of other ands that come with being young and sick and misunderstood.
A middle aged nurse towered over the bed like the worst sort of childhood monster. The kind that presents in a caretaker role, but quickly shows herself to be another thing entirely.
She pointed her finger at me and announced I was a waste of time.
I was shocked. What did she mean? I felt terrible.
But apparently since nothing had shown up on her EEG they were deciding I’d made the whole episode up. I was being discharged with no further research.
In her defense, people dismissed me for years after that. I made it easy, I suppose. I was a poor punk kid with shredded clothes and at times a shaved head, other times bright green Final Fantasy inspired tresses. I generally didn’t mind not being taken seriously. Generally.
The words added up. There was a period of time I went to the ER afraid I was having a heart attack. It turned out to be costochondritis, but there were plenty of medical staff that made sure I knew I was rather silly for taking it seriously. Still others didn’t even consider the inflammation in my ribcage- or later, the slipped ribs, and declared I was having anxiety attacks.
And after awhile, maybe I was.
I took Xanax and anti-depressants that did not stop my heart from racing, or my chest from aching, or my depression from depressing.
No matter what symptom I presented with, from GI tract bleeding and anemia to rashes that steroids can’t destroy, the conversation would turn to anxiety- and somehow, anxiety was minimized.
If, as a medical professional, you truly believe someone is presenting with pseudoseizures because of anxiety, I strongly believe you should be that much kinder to them. Instead, time and again, my experience showed the more they believed the cause of my distress was psychiatric, the more likely they were to be short with me at best or outright mean at worst.
Our meat is telling our stories- the hitched breath as one tries to explain the radical feeling of CSF (Cerebrospinal fluid) dripping inside the skull when they don’t know what CSF fluid is doesn’t make someone is a liar, even if they are wearing a ratty sweater and Doc Marten boots. Rare disease is often misdiagnosed many times.
My heart beat as fast as a rabbit’s as I’d change out of crinkly paper gowns and see myself out.
I tried to be practical. When enough test results come back normal and you’ve had enough stern people tell you “it’s all in your head” it begins to sound reasonable (although everything is in one’s head- your YOU- the brain- is in your head, but that’s another argument).
Even my process of making myself when I fell apart became suspect. Doctors would send me to therapists who would send me to neurologists who would send me back to primary care and the circle spun on.
I argued the benefit of dissociation with people who preferred me to pick a spirituality. I could not agree to forgive as the way to heal. I didn’t understand why my past would be brought up when I needed a migraine medication.
Its meat in there, I’d repeat to myself. Meat. Fragile, complicated, weird, electric meat. It doesn’t need to forgive to have a migraine or not. It’s made other pathways out of those stories.
I deeply believe one of the worst things someone can do is make you doubt your own experience, and that is what these doctors did year after year.
I could not let go of the wrongness of me. I tried to be a dutiful patient. When a doctor asked me to explain why I was only seventy nine pounds, I said food felt like poison. It does feel like poison. When I eat, my stomach bloats. I get cramps, and at times I vomit. It worms its way slowly through my intestines, inflaming all the way to its bloody conclusion. That would be enough to put any pragmatic person off most food.
I was diagnosed with anorexia and went through an intensive eating disorder treatment program. I gained weight, painfully, but afterwards I was still sick. I was afraid to confess my symptoms in case it would mean another round of eating disorder treatment.
I don’t think I would have gained weight on my own, but knowing what I do now about the medical cause of my digestion problems, I would definitely choose another path to weight gain.
My shoulder dislocated. I could see it hanging weirdly in the mirror. I cried to see it at the time, unused to the angle. On my medical records the doctor wrote I sprained my shoulder because they refused to believe I could dislocate it without an acute injury, despite being able to see my arm hanging oddly right before their very eyes.
I’ve had one long term doctor (before the one I’m with now). I wish I could go back in time and read her medical records so that she didn’t have a chance to make so many. A brief sample:
Pink hair in child’s pig tails
I could dive into the fact that at the time I was attending cosmetology trade school, known for producing all kinds of questionable hair styles. I could say it’s impossible for my hair to be in child’s pig tails as I was an adult.
But instead I’ll bring up the next sentence and the ramifications.
no conjunctival/scleral injection or discharge
Wonderful! I didn’t have pink eye! But I do have blue sclera. Something that the doctor missed having honed in on my “pink hair in child’s pig tails”, even looking at my sclera to rule out pink eye.
Blue sclera is characteristic in connective tissue disorders. It would be another nine years before I would be diagnosed, for a total of nineteen years from the first time I presented with symptoms to a medical professional (not counting the early childhood allergic reactions to such innocent things as immunizations).
Towards the end of my time with that doctor, I requested an ANA test based on my cousin having a positive test. When mine came back positive, the doctor told me it didn’t matter what I have.
She wanted me to go back to cognitive therapy and stop trying to find a medical diagnosis when a psychiatric one suited her just fine.
I researched more. Of course I did. It’s what I do. If I was truly fainting out of a post traumatic response I ought to be able to stop it by rooting out the memory and staking it like a physic vampire, right? I made charts, diagrams, notebooks of thoughts and symptoms- the irony is not lost to me. The notebooks could be used as evidence of insanity. But! Let’s point to Oliver Sacks alone. He had stacks of notebooks. Having obsessive notebooks to one therapist could mean my being mentally unsound, and to another, simply a writer.
My doctor moved into another practice, and I found myself without. I’d always sought out female doctors. However, armed with medical records detailing my hair evolution, when a specialist I liked referred me to my current doctor, Dr. Thomas Gray, DO, I decided to give a man a chance.
I was scared. I’d just read my medical records. What was he going to think of me? I didn’t even know what I thought of me anymore. The cousin who’d had a positive ANA had recently been diagnosed with Ehlers-Danlos syndrome, a rare genetic connective tissue disease.
Whenever I’d brought in family history to other doctors, they’d shrugged it off. Why was I putting myself through this again?
It’s always because of one reason: I feel like death walking. And so, there I was. New doctor. Old heavy weight running through my mind of the glass shards falling down around my non soul; his nurse called me back to the patient room. I eyed the patient bed. Nope. I’m not into it. I sat on a chair, and worried the edges of my Moleskine notebook between my fingers.
My doctor is tall and thin, with bright curious eyes and a ready laugh. He’ll sit wherever. The chair kitty corner from me? Yes. The edge of the patient table? Sure. The foot rest of the patient table? If it’s convenient.
He listened. That was the first thing. Listened with his whole body, his eyes engaged, leaning forward.
After all the listening, he examined gently. Most of the time people hurt me. Oh, they don’t mean to! People with connective tissue problems are fragile and sublux easily.
He noted my hypermobility that very first visit, and explained its potential significance. No one else- not any of the physical therapists, emergency room personal, medics, doctors, specialists of assorted variety had ever done that despite me being a 9/9 on the Beighton scale. He wrote me a prescription for aquatic therapy right then and there.
He told me he didn’t know much about Ehlers-Danlos syndrome, but he would refer me to a geneticist to get tested. And he told me if he couldn’t find a specialist who would help me, he was willing to learn.
Let me repeat that.
If he couldn’t find a specialist who would help me, he was willing to learn.
It took nineteen years to hear those words. It’s not about having all the knowledge, although of course Dr. Tom impresses me all the time with his skill set. It’s about how he applies his knowledge.
He decides to reach out to other physicians. He decides to research; ask questions, actively listen. He always wants to find the next solution.
It’s a choice to see someone at their worst and see past their frizzy hair, to the fatigue beneath, and then perhaps it’s a curiosity in a doctor to chase after why the fatigue is there. It’s so much easier to say its only anxiety and ignore everything else.
I’m not sure why it took nineteen years to find a doctor who had that combination of curiosity and scientific nature but in rare disease, the statistics reveal I’m not unique. Far too many suffer years with needless pain, being told their symptoms are caused by conversion disorders. I hope more people like Dr. Tom find their way to medical school. We need them.
In the year with Dr. Tom and the EDS specialist he referred me to, Alena Guggenheim, ND.; I have had a positive tilt table test. I have Postural orthostatic tachycardia syndrome, which accounts for the rabbit heart rate and fainting spells. He’s helped me get braces for my dislocations. I’ve had physical therapy. I have had a gastric emptying study which found gastroparesis. I have had an echocardiogram so we know my mitral valve is okay-another common EDS comorbidity. I had an abnormal CINE MRI that we’re working on now.
Because of my EDS diagnosis, I went to an EDS knowledgeable optometrist who diagnosed me with idiopathic intracranial hypertension. “It’s called idiopathic because we’re idiots who don’t know why it’s happening,” the optometrist quipped. Left untreated, IIH could result in going blind- and in fact, I have already experienced a bout of temporary blindness.
The best part is I can go to Dr. Tom with my weird electric meat and its stories even as the frame is falling, when we’re changing doses of medication to lower intracranial pressure and tell him how it feels without the fear. The fear of being sent away, to be someone else’s problem, because obviously what I’m describing is insanity.
I can blend the stories together because that is what humanity is, after all- whether the label is depression or dysautonomia, it’s coming from the same body. Part of it will become fiction, and part will stay in my diagnosis; in my mind as it races through its questions and in my doctor’s listening.