By Cynthia Toussaint, PNN Columnist
My world became unreal and terrifying when I was 18. Literally, everything looked, sounded and felt distorted. While I’ve long known this experience is called “derealization,” I only recently discovered it’s a form of dissociative coping that sprung from childhood trauma – trauma that also seeded a lifetime of chronic pain, including my Complex Regional Pain Syndrome.
During my trauma-release work last year, I learned that dissociation protects us from experiencing what is too overwhelming: perceived annihilation, if you will. My childhood years were so traumatizing, I now see that my mind made everything unreal to escape the horror of my world, which included domestic violence, mental illness, addiction and suicide.
There are five different forms of dissociation (depersonalization, derealization, amnesia, identity confusion and identity alteration), and my trauma therapist explained that, unfortunately, derealization is the least common variety, with scant research behind it. Also, it’s near-impossible to manage.
When my reality imploded a lifetime ago, my derealization felt anything but protective. It invaded me so dark and destructively, I feared I’d gone insane and that my next stop was an asylum.
It all started by eating too many pot-filled brownies while I was on an anxiety-ridden outing with my abusive brother and his posse. To get home, I was named designated driver because I’d partaken less than the others. I was terrified because I felt like I was on a bad trip. Also, I’m awful with directions and knew my brother would mercilessly belittle me for my wrong turns.
Still, I took the wheel. Soon, out of nowhere, or so it seemed, I blew through a stoplight and missed a speeding Mack truck by a hair, my spatial abilities incapacitated. There must have been an angel on my shoulder that day as we all should have died. In a way, I did.
After being relieved of my driving duties, the people around me, the cars outside, even my own body became terrifyingly unreal and distorted, like being in a funhouse hall of mirrors. I also had such severe paranoia that when my brother’s girlfriend took a turnoff I wasn’t familiar with, I was certain she was driving me to hell. And when I say hell, I mean fire, brimstone and the guy with the pitchfork and tail.
The horror didn’t let up for the next couple of weeks as I felt I was looking through a veil of fog. Perhaps the freakiest part was that everyone acted as though they weren’t on the same drug trip. I felt alone, always holding the tears and screams inside. I tried to play along with everyone else’s normal, reminding myself that if I let out my terror, they’d likely have me committed.
Panic Attack
Soon after, when my family took a long-anticipated trip to New York City, I lost my marbles. It was too much of a load of sensory input that I was unable to process in my vulnerable state. One night in our hotel room, I released my panic with a gut-wrenching scream that didn’t let up for hours. Horrified, my family got me to an ER, and I was diagnosed with an anxiety attack. I only wish.
After that, my derealization became my new normal. Good god, it didn’t let up for an entire year. During college and my first professional dancing job, I learned to cope by using distraction and reminding myself that the bad times were temporary, that some days were better than others.
After developing CRPS and seeing my life and dreams crumble a few years later, I had to give in to the spreading, fiery pain by moving back into my mother’s home. Anxiety, fear and despondency took over and my derealization roared back worse than ever. I was debilitated to the point that I could only lie on a bed and stare at cracks in the wall. It was a single crack that looked real to me.
Out of desperation, I saw a compassionate psychiatrist who mercifully blew open my world. I was stunned as he asked questions that lead me to understand that, not only did he believe me to be sane, he actually knew what plagued me. Stunned, I asked him if my symptoms were familiar.
“Let’s just say that if I had a nickel for every patient that came to me with what you’ve got, I could buy something expensive,” he told me. With that, a ton of weight lifted from my shoulders.
This healer put me on a benzodiazepine, Klonopin, and gave me a book that detailed my dissociative disorder. I was no longer alone and, at last, knew I was sane. Regarding the Klonopin, the good doctor added, “I wouldn’t be surprised if your pain lets up as well.”
Within a few days, my derealization miraculously eased by about 80% and, as a bonus, I went into my first CRPS remission. The word “hope” re-entered my vocabulary, and I was again among the living.
44 years after eating that brownie, I still wrangle with derealization. If stressed or triggered, the fog closes in, but it no longer runs me. I’m fortunate the clonazepam (generic for Klonopin) is still effective, as I have a brother who isn’t as lucky. He’s suffered most of his life with derealization, and nothing has ever provided respite.
Trauma brings on so much bad in so many ways, and our minds and bodies go to astounding extremes to persevere. Since my trauma-release work, I’ve arrived at surprising new understandings and feelings. I’ve come to a place of acceptance, even a bit of gratitude, for my derealization. It’s gifted a lifetime of protection by shielding me from what I likely wouldn’t have survived. It was simply trying to do right by me. Still is.
For real.
Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 19 co-morbidities for four decades, and has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”
