Kaz DeWolfe
I woke up on September 1st, 2017, and I knew that it was bad. Instinctively. I just had a gut feeling that everything was terrible. My head hurt. I felt nauseated. I am a synesthete, I have sensory processing differences. I have color associations for letters, words, days, and weeks. “September” for me has always been red. So that morning on September the 1st, that morning that was overwhelmingly bad to its core, every time I saw something that was red, it popped out at me with such intensity that my head started spinning. Everything grew dark. I started to faint, barely catching myself each time.
School had recently started, and my child was going to Kindergarten. My kid is possibly autistic, though I see no reason to force an identity on her. I imagine when she’s older she might find a home within the autistic community. When put in sensory demanding environments full of loud kids, she sometimes lashes out and sometimes has meltdowns. Within that first week of school, she had already been sent to the principal’s office and had been referred to the STEP behavior program. I had to have a meeting with the teacher and the BCBA (Board Certified Behavior Analyst). Knowing the horrors that autistic kids have suffered at the hands of BCBAs, I was terrified.
So that morning, as I dropped my child off, I was overwhelmed and scared and my head hurt, and everything was just bad, and the color red was making me light headed. I thought if I got some fluids and lay down my head would stop hurting.
It didn’t.
It didn’t stop hurting for days, and then weeks, and then months. I had a chronic migraine. At first a shot of toradol had managed to quell it for a while (though not completely) but it came back. My vision started getting weird. I was seeing some things that are pretty common migraine aura phenomenon. Shadows in my vision, snow, zig zag or wavy lines. But then it became apparent to me a few weeks in, that I had seen some things that I had thought were real, but didn’t exist within consensus reality.
I saw a padded room next to the STEP room and heard a child banging on the door in there. The principal told me about an incident in which my kid threw a chair and had to be taken to the STEP room, and I was sure they had put her in that padded room. I was terrified for her. I posted in a community group asking for resources on homeschooling, saying that my kid had been put in the padded room at her elementary school. I was ridiculed by the community for saying this, because the elementary schools do not have padded rooms. I was delusional. I was mad.
One morning, shortly after dropping off the kid at school, I got a call from the BCBA. She said I had to come get my child, or she would be forced to restrain her. I screamed. I swore. I kept screaming. I rushed to the school, and burst into the STEP room, rushing by the teacher and a staff member. And then I saw where they put kids in distress. In the back of the STEP room was a closet with cutesy words hanging on string above the door reading “big feelings space”. The BCBA had her hands on my kid and was “escorting” her into a closet. I screamed some more. I took pictures of the closet for evidence of this abuse. The padded room had been but a vision, but the “big feelings” closet was absolutely real.
A small percentage of migraine with aura sufferers have what doctors call “complex hallucinations,” what I am calling visions. Maybe my vision of the padded room was summoned from my own fears of Applied Behavior Analysis and the well known abuse of autistic kids in these programs. I had worked in an ABA program when I was young and naive, and while that program didn’t use seclusion, I was well aware of how traumatizing such programs can be. Or maybe I had psychic powers. Maybe I had seen into another universe in which that school did have a padded room. Maybe it was a vision sent by G-d, as a warning, though I am pretty sure I do not believe in G-d.
What creates the visions is not actually of interest to me. But I have felt, frequently over the last 9 months, that I have been given a super power. A painful superpower that I actually would rather not have, but a superpower nonetheless. I’ve been able to see things that others cannot see, and each of these visions has been a revelation of the way things actually are. It has been quite a dangerous gift.
Over the last 9 months my head has, more often than not, been in astonishing pain. During that time, I’ve made some huge shifts in my home, personal, and professional life. Some changes were merely because chronic pain has been disabling. But many big changes have been because of my terrifying and astonishing visions of reality. I took my kid out of public school and found a secular homeschooling community and a bunch of homeschooling/ radical unschooling resources. I’m trans, and in another big shift to my existence, I started hormone replacement therapy, because I could see sometimes when I looked in a mirror, that I am supposed to have a beard. I can see it. I also stopped working as a patient representative, because I could see too much horror every time I walked onto the psych units. I saw violence before it happened. I saw in graphic detail, corporatism and capitalism and the state killing oppressed people everywhere I went.
I’ve also seen awe inspiring beauty, sometimes simultaneously with the horror. I haven’t had much energy for creating art lately, but I have seen so many things to inspire future work. I feel like I am possibly turning a corner on this migraine, and things are starting to look normal again. Perhaps soon I will have the energy to draw from all these experiences and paint and write poetry. I want people to see what I have seen. I think it might be really important.
While I’m inspired, and transformed, and largely grateful for this experience, I’m also just fucking sick of the pain and I need it to stop. Its worn me down and nearly ruined me. I am proud of my experiences and I fully believe that mad people shouldn’t have to recover from visions, voices, or the ability to have extreme states. But I’m also just really connecting with the desire many have to overcome immense physical, emotional, or spiritual pain by any means necessary. I’ve tried over a dozen different medications. I’ve tried supplements. I’ve been to 5 different doctors (not counting ER doctors), 4 of whom were specialists. And when nothing has worked, I have considered just killing myself to make it stop.
I’ve talked to people who have found Mad Pride to be off putting at first glance, because they were suffering and needed relief from that suffering. And here we are saying we should be proud of extreme states and voices and visions and there is nothing wrong with us. I think both can be true, are true.
For many of us, our pain is caused by things outside of ourselves. Its caused by violence, marginalization, capitalism, oppression, war, poverty, misogyny, abuse. Even when its not caused by any of those things, we still have to interface with an oppressive and paternalistic system in order to access relief from that pain, and many times we cannot access the relief that we need. Many times the treatments we are offered are ineffective at best and damaging at worst.
We’re put in terrible circumstances, and we can be proud of how we respond to those circumstances. We can fight collectively for relief from our pain in all of its forms. We can work to liberate ourselves from oppression and work to end paternalistic healthcare practices that are leaving us in ruin. Some of us don’t want to recover and some just feel like we cannot recover. Also, recovery can mean something different to each person. And whether we are working towards some form of recovery or not, we can fight to address the systemic causes of our suffering and be proud of ourselves all the while. I think Mad Pride can be for all of us.