The Most Uncomfortable Read I’ve Ever Had
My Father’s Autobiography & Me: Setting the Record Straight
“Pre-Autism,” Edgar Cayce & More Urine Injections
In 2016 my father sent a Word document to me, an autobiography he had been working on for 4 years. He had lived a remarkable life and the text that he wrote about his childhood in Korea, living under Japanese occupation, was truly fascinating. But once he started writing about me I knew it was going to be difficult to read.
Both of my parents are deceased, so in a sense it’s all water under the bridge. There is nothing that can be done to change the past. But I can change the way I feel about it.
By writing down my experiences, I am trying and sometimes succeeding at taking back a narrative that has spiraled out of control my whole life, one that was aggressively defined and curated by my parents. This goes to the heart of my motivation to write. I was told so often, so forcefully that my wants/needs/experiences were something altogether different from what they really were that it became difficult for me to discover and explore my personhood, my humanity.
The quotes I include from my father contain the following alterations: my mother’s name, the name of the person who gave me urine injections and identifying information about our address. Other than that, I have quoted directly from his text as-is:
Douglas developed some health issues and was tested to be suffering from allergies. Martha found a doctor in Philadelphia who specialized in custom making anti-allergy serums. Dr. Simmons unorthodox treatment method was based on the same principle that Mahatma Gandhi had used. Martha had read that Gandhi drank his own urine every day to boost his body immune system. Human body makes chemicals to fight diseases and the excess immune chemicals are supposed to be flushed out in the urine. By drinking one’s own urine one is recycling the chemicals to build up the immune system against diseases. Dr. Simmons made a serum from Douglas’ urine and injected it into him to cure his allergy problem….
The matter-of-fact way he writes about these dangerous and bizarre procedures is representative of his ongoing cluelessness in his own role of the systematic abuse I experienced. He invokes Mahatma Gandhi in justification for drinking one’s own urine. However Gandhi never did that. Even if he had, it doesn’t explain how that would extrapolate itself into the benefits of having me injected with my own urine.
My father refers to my “allergy problem.” There was no allergy problem. That was something my parents made up. I would occasionally sneeze when I dusted, but that was it.
He said “Dr. Simmons made a serum from Douglas’ urine and injected it into him.” There was no serum. I was injected with my own urine straight-up. Not that either would have been acceptable, but the idea that a serum might have been concocted seems to imply that there was some sort of science behind it, like a third party lab might be part of the process, legitimizing it. But no third party was involved. My guess is that if that had been the case, they would have reported Dr. Simmons to the medical board, although I’m not convinced that Dr. Simmons was actually a doctor.
In 1992 my therapist asked me to have my parents join in on sessions, as the work we were doing involved residual emotions from their previous behavior toward me. To my surprise and to their credit they consented and attended 3 sessions.
I had intuitively known all along that urine injections were not a legitimate medical treatment. No one else I knew, or had ever heard of, had received them. But as an adult I had done enough research to demonstrate that they were dangerous to the extent that at least one person had died from them.
In the safety of my therapy session, I confronted them about what they put me through, in particular the injections, the goo, the coffee enemas, the extensive allergy testing, the fasting, the megadosing of vitamins and amino acids via both injections and pills, hospitalization, etc.
They deflected responsibility and said that I had been sick (not true, until they made me sick because of the “treatments”), that they had been expressing love toward me by doing those things which were necessary for my health. They said some version of “We did the best we could.” My therapist didn’t point out to them that they were still not accepting responsibility and I was too emotional to process it at the time. We stopped inviting them when it was clear that their participation wasn’t helping.
Douglas also had nightmares, and often his tempers flared up, shouting, throwing vases, and unpredictable in his behavior. We couldn’t understand.
I was having night terrors, not just nightmares, a significant distinction for anyone who has had them. As far as my “tempers,” I remember throwing an object across the room, when I was alone, when I woke up from a night terror, while still being in a sort of waking state of terror. I never threw anything at my parents or anyone else.
That said, yes, I was very angry with them and the world, and I would snap at them frequently. I hated them. I told them I didn’t want to be taken out of school every week to go to Philadelphia to get urine injections. I told them I was being bullied at school. I told them how much I hated going to all those doctors and getting painful shots, how nauseated their concoctions made me, that the things they were doing were making me sick. I would yell at them to leave me alone. I tried to assert myself, but I was powerless. They ignored me.
When the symptoms continued we got concerned and Martha took Douglas to doctors. One of them thought that Douglas might possibly be pre- autistic. In addition to seeking doctor’s help Martha sought out non-traditional treatments as well.
Martha and I were scared and prepared to do anything to prevent his autism. I went along whatever she suggested if it helped Douglas. Martha discovered healing methods espoused by Association for Research and Enlightenment (A.R.E.), an organization practicing holistic treatment of illnesses. A.R.E. was founded by the late Edgar Cayce in the 1930s.
The person who told them I might be “pre-autistic” was the same person who was injecting me with my own urine. My father says my mother took me to “doctors,” plural. She was doctor-shopping and went through several, insisting that I was “pre-autistic” until she found one that told her that I “might possibly be pre-autistic.”
According to The Journal of Neurodevelopmental Disorders, “The pre-symptomatic period is generally considered the time before and during the emergence of core symptoms of ASD in the latter part of the first and second years of life.”
In other words, the pre-symptomatic period for autism (what my parents seem to have meant when they used the term “pre-autism”) is usually in children ages 1–2. I was 7. This was another thing my mother made up to justify whatever bizarre procedures she decided to put me through. If my father had chosen to question this, it wouldn’t have been difficult to uncover the truth. But he didn’t.
Martha attended many A.R.E. meetings at member homes and I drove her there for she was afraid driving at night. I would be waiting in the car dozing ‘till the meeting was over. This went on for some time, and I did not complain. I did not complain because I thought somehow through what she was doing Douglas’s ailment was getting help, and since Martha was such an enthusiastic participant in A.R.E. that I believed it made her happy….
“It made her happy” and “she was such an enthusiastic participant” is an understatement. She was a true believer in all of it and I was the proof.
