I have frequently been, the past few months, in a state of strong but controlled rage. What anyone reading this has to understand is that the rage is not only for my own situation, but at how large the situation, and similar and worse situations, are, for a whole lot of people in the world. If it were only my own situation… well then I might not need to write about it so much, and I wouldn’t be this mad about it.
At some point I started realizing the back pain I was experiencing lately was familiar. The part that made it somewhat obvious was the kind that starts at one spot in my spine and radiates either upwards or downwards. I remembered that. What made it even more obvious was when the pain was terrible, and I was twisting around into all kinds of positions on the floor trying to find one that took the pressure off the parts that hurt the worst. Then I remembered what it’d been like in my late teens. And I remembered what was done about it.
I’d been able, somehow, to say something that got people’s attention about the pain that I was feeling. It was intense. Almost as intense as it’s been lately. I was having not only back pain but periodic migraines and the pain that is now being called some form of trigeminal neuralgia. I was only able to articulate a lot of it in vague ways, if at all, but I did articulate it.
At one point I was sent to my general practitioner about this. He told me to bend over. He told me that since I was obviously quite flexible, there was no physical problem in my back, and therefore nothing to worry about. (Even though I have a family history on my mother’s side of spines so flexible that they induce pain and other problems.)
Then someone suggested that I check into some alternative concept about this pain. It had to do with energy. There was supposedly a snake curled up at the bottom of my spine. My problem, of course, was that the snake was jumping up my spine, creating all this pain. When it thrashed around in my spine, that created the different positions I twisted myself into. When it thrashed around in my head, those were the migraines. This was an acceptable thing to believe in California. They had therapists for it.
I went to see a therapist for it. She showed me diagrams of the different areas down my spine and what they all supposedly meant. She told me that the snake awakening in me had something to do with spirituality. At one point she told me that autism was just being born with the snake awakened. And the different parts that hurt had to do with spiritual progress or spiritual blockages.
Nobody offered me physical therapy. Nobody offered me pain management. Nobody offered to try to find the source of the problem. All I got was the woman my father dubbed the “snake lady”, whose main advice was that I ought to stop praying and join a cult because there was no way I’d survive — literally, she said I’d die otherwise — without a guru with a long Indian-sounding name and a big following of well-off white new-agers.
Meanwhile, I had been trying to function.
I had had to drop a class in college because I got terrible headaches. (Headaches, I was later told, were a sign of higher spiritual advancement, and I just needed to get the snake to jump out the top of my head in order to get release from this pain, the problem was I just had these blocks that wouldn’t let me.)
I tried to go to university when I was in so much pain that I spent a lot of my time writhing into different positions on the floor, crying, moaning, or screaming. I didn’t know it wasn’t only being autistic, but also the pain I was in, that was keeping me from functioning there. I didn’t even know fully how much pain I was in, or that I was in pain so severe that most people would stay in bed, call their doctor, and not even attempt anything close to what I was attempting.
I didn’t even make it to class most days. I thought I was dumb, weak-willed, and crazy. I felt the pain, it wasn’t that I couldn’t feel it, but I couldn’t connect the feeling to the severity of what I was experiencing, or the limitations in what I could do. I kept straining to do more and more and being able to do less and less. And when the snake lady and similar previous people got hold of me, I began to see myself as lacking in all kinds of spiritual qualities, and began praying desperately for help and guidance (which I did receive eventually, and said guidance told me to get the heck away from all this snake crap) and viewing myself in general as having some horrible deficiency related to the symbolism the assorted snake-obsessed people taught me about whatever area I had pain in.
People around me didn’t see me as in pain, either. Because I was autistic and had spent my adolescence in both inpatient and outpatient versions of the psych system, I was simply proving that crazy autistic people who go off their meds don’t belong in universities. They were perceiving me through a specific lens, and therefore unable to perceive what was really happening, even though it was right in front of them, and if I had been ‘normal’ it would’ve been clear as day to them why I behaved just like someone in severe pain, and why a person in untreated severe pain might not be able to function in a university environment.
I left university and found the snake lady.
And eventually I left the snake lady too. (As I got into the car with my mother after announcing my intentions to do so, she screamed at me and my mother all about how I was making a mistake.)
There was someone else who was heavily active in the same circles as the snake lady. The snake lady looked down on her because of the fact that the disease she had did not go away. The snake lady seemed to see that as a sign of lack of spiritual progress. This person died of the disease she had, still convinced it was a spiritual problem.
It took the pain I’ve experienced the last several months to remind me what it was like back then. I’m now in complete awe of the amount of things I tried to take on in a state so reminiscent of what I’ve been feeling like lately. And I’m also enraged. Not in a way that consumes my life or anything. But a quiet rage that shows up whenever I think about this whole thing. And I don’t think it’s at all misdirected
It’s directed at all physicians who treat some people as if we’re not the same as their ‘normal’ patients, and as if our expressions of pain don’t exist or don’t mean anything.
It’s directed at all physicians who simply refuse to treat severe pain, or to try to find out why it exists.
It’s directed at at the parts of the new age movement that step in where the physicians have failed to, and encourage people to view people with chronic pain, including that which comes from life-threatening diseases, as experiencing a spiritual block of some kind, and thus being either higher or lower spiritually, but definitely not in need of something like, say, pain management or treatment of the actual problem or anything like that. Don’t get me wrong, I’m all in favor of genuine spirituality, and even don’t mind the possibility of genuinely considering where our bodies fit into our religious beliefs, but this is not it.
For me, in this particular case, it was eight years of missing out on possible treatments for severe pain while wondering at times why I couldn’t function. For other people, it can be longer. And for still other people, a disease can take their lives while doctors are standing around doing nothing and the new-age movement is stepping in to tell them their pain either means they’re on their way to enlightenment or they’ve sinned in some way to cause it. There is nothing good about this situation, but maybe writing about it will be one step towards changing it. And doctors, take note, when you refuse to treat this sort of thing, the people who eagerly step in to take your place have an even worse effect on your patients than nothing at all.
Edited to add: Another thing doctors should take note of, is that sometimes the new agers (or whoever else teaches these strange things) have gotten to your patients first, or sometimes your patients have extremely different interpretations of the sensations in their body than you do. I wish I could remember the web page I once saw where a doctor had written down some stories he’d told his medical students.
One of them was about a man who came into an emergency room screaming that the devil was squeezing his heart. At first, the people who worked there didn’t take him seriously, figuring he was “just schizophrenic” (which was, in fact, a diagnosis he’d received at some point), and that therefore any odd perception he possibly had must be a hallucination or delusion and have no grounding in reality at all. They were proven wrong about those assumptions when the man had a heart attack.
The moral of that story is, just because someone tells you that the devil’s squeezing their heart doesn’t mean nothing’s wrong with their heart, and just because someone tells you there’s a snake jumping up and down their spine wreaking havoc doesn’t mean they don’t have some kind of genuine back or neck problems, migraines, MS, referred pain from any of a number of internal organs (I’ve felt pain in the middle of my back from gallbladder disease and reflux personally, and at the time I saw the snake lady I had untreated nerve pain that amplified any pain of that nature to cover a larger area than it did after treatment), or other things that might cause that kind of pain. Whether their perceptions are distorted to begin with, or whether they’ve been taught to view things in a way that seems distorted to you, or whether they just happen to have a very colorful way of saying things, it doesn’t mean there’s nothing behind what they are telling you.