Hi to whoever reads this, whom I know is a person just like me, with likes, dislikes, joys, pains, etc. This is Anlor once again. My book: Being Seen/a Memoir about me: an Autistic Mother, a French Immigrant and a Zen Student will be out on March 20, 2016, look for it on Amazon! This post will be about a chronic pain in my neck, deeply connected to my autism, I have had for the past 16 years.
In the middle of the night (The Night) sometime at the very beginning of the millennium I woke up suddenly during the darkest night hours with an absolutely horrible pain in my neck. I wanted to throw up and in order to throw up in the nearby toilet, I crawled like a snake to the bathroom and retched, and retched, and retched. Exhausted I lay down on the cold floor until I had gathered enough energy to crawl back to my bedroom and lay still and fully awake until dawn.
When the sun finally came up, I found that I could not turn my neck to the left and the pain on the left upper side of my body was searing, but at least I was able to stand up. In order to turn to the left, I had to turn slowly from my torso. I did not have any health insurance but twice I dug in my hard-earned pennies to go see a different chiropractor, but the half-hour sessions did absolutely nothing to alleviate the pain. The first five weeks, driving was a challenge, but I had no choice because I had to get on with my life – which at that time was all about my eight-year-old son.
Even though I kept doing things like going back to San Francisco State University, teaching and some sitting meditation, the pain in my neck was always there, and sporadically unbearable. For the next six years I simply repressed the pain that neither I nor anyone I consulted could alleviate. The tense knot meant I had to find ways to adapt in order to do many tasks, and flare-ups increasingly took place. Once during yet another night I had to go to the emergency room, but my sensory problems made this a nightmare. I speak about this experience in my book:
“Since I was now working full-time for the first time since my arrival in California, I had health insurance. Thus, when a spasm intensified the pain in my neck, I took a chance and went to the nearby hospital emergency room. I could not take a cab since I could not take the chance of being exposed to the taxi driver’s potential loud radio or perfume without my neck tensing, so I had to drive myself. It was a dangerous feat since I could not at all turn my neck to the left but I’d rather dare this than risk a potential increase in the pain. At least it was during the night so there was not much traffic. The doctor who saw me that night only gave me a muscle relaxant and a prescription for pain killers which did nothing to address the root of the problem. In the next few days the spasm in my neck relaxed enough that I could resume work, but the painful tension was still there underneath.”
Six years later, in September 2006, one morning it all came to a head: I became fully paralyzed in my upper left body and could not move my left arm more than 3 inches. I can’t find a proper adjective to describe the pain that then radiated down my back and left side, creating a limp. It was, as I heard someone say one day about other autistic people, like a jolt of painful electricity. I used crutches to go see the doctor at the traditional medical clinic. I still don’t understand how it came to pass: the doctor believed that my limp meant my knee was the problem. Later I came to understand that this was a testimony to my inability to communicate at that highly stressful time in my life. He apparently thought I was imagining my illness, and despite the number 9 on the scale of pain I indicated on the emergency form for my neck he referred me for further knee exams.
Back at home, the only thing I could do was physical therapy by myself. Just before I went to bed, the first few nights, I made a make-shift ice pack and hot pad and used them alternately for a total of two hours. Still for the next few months I woke up in pain each time I had to turn around in bed. Every morning for the next several years, I spent up to two hours a day lying flat and rolling my neck and spine in various ways, using of course the ice pack and the heating pad, and adding various massage implements, with legs up and knees bent.
The more I was in pain, the more I was sensitive to all sensory stimuli like noises, smells, lights, movements, etc. Many stories about these times can be found in the third part of my book. The only two I will describe here are the one that stand out most in my mind:
> The only place I could go outside was for a walk in the hills. Still I stayed out of the trodden path in order to meet fewer people (meaning, for example, less loud voices of music and less fragrances). One time I walked far up and down on the other side of the hill near my home: the closer I was to the noisy road traffic, the more the knot in my neck tensed. When I finally backed up, I felt like an underwater diver coming out of the pressure, the tension in my neck released with each step away from the source of noise.
> Twice an individual whom I trusted told me off in no uncertain terms. Each time the pain immediately shot up, I had the runs, had to lie down for a few minutes while sobbing uncontrollably, and when I finally stood up I limped in acute pain for three days and had to use my crutches.
Becoming further and further crazed (literally) with pain, I was at the same time unable to earn money. With much difficulty I kept doing my daily zazen, it was the only thing that made sense and did not hurt me further. My sensory problems gradually became so acute that I could no longer go outside. At the very last minute my financial survival was secured due to the Social Security Disability award I received with the help of calWORKS, a welfare program that gives cash aid and services to eligible needy California families. Two years later I automatically received Medicare, a medical insurance which allowed me to see a good neurologist thanks to the help of a friend who took me there despite not believing me. The neurologist immediately diagnosed my autism and I was given proper medication.
When I was thus helped in several ways, the chronic unbearable pain in my back gradually started to diminish. Another two years later, when the pain finally became bearable and I could better go in public, I found a way to regularly see a chiropractor and a Jin Shin Jyutsu therapist, thanks to a Patient Assisted Funds at the nearby Sutter Pacific Medical Foundation Institute for Health and Healing Clinics. The chiropractor told my neurologist that in thirty years of his work he had never seen such a case. Now in 2016, the pain is still there, but it no longer impairs my daily life. In complete synchrony with the lessening of physical pain I can withstand sensory challenges much better.
The short video below is an example of the type of spasms I still had in 2014. I am the patient lying down and my chiropractor is the one extending my arm, while someone else from the staff is filming.
During the entire 16 years of ordeal, I have kept up my sitting meditation, known as zazen, and I believe that it is exactly the underlying reason the quality of my life improved, allowing the wheel of my life to slowly come back on track. As I do zazen every day I often reflect on this pain, it is difficult to forget since with each breath I can feel the tenseness in my upper back/neck/left shoulder! I think I can’t be the only one in the world who feels this way.