By Cynthia Toussaint
I’ve been taking the anti-seizure medication Klonopin for 30 years. It was originally prescribed for my anxiety disorder triggered by high-impact, undiagnosed chronic pain. For me, Klonopin was a miracle drug. Not only did it manage my anxiety, it put me into my first, though short-lived, partial CRPS remission.
Recently John shared the results of a research study stating that folk on long-term, high-dose Klonopin have a much higher occurrence of Alzheimer’s disease. At first, I was frightened by the news that chances are decent I’ll someday forget who and what I love, directions, where things are – even my name.
I had gut anger at the doctor who prescribed my Klonopin because he didn’t tell me that Alzheimer’s was a side-effect. Of course my anger wasn’t rational as this connection has only recently been discovered. I guess when you know you might lose your mind, reasonable thinking goes out the window.
As I pondered my possible path to dementia, something else hit me. An odd feeling. My anger and fear turned to longing, to a place of peace. Even hope.
For years I’ve fantasized about losing my memory as an effective emotional pain killer. This was sparked by the movie, Eternal Sunshine of the Spotless Mind. In it Jim Carrey’s character wants his memory scrubbed clean due to a romantic relationship gone bad. Though Carrey ultimately opts to reverse the process, this struck me as a Hollywood ending. I always knew my CRPS wouldn’t afford me such a rose-tinted outcome.
Yes, with Alzheimer’s I wouldn’t remember how to count to ten. But I also wouldn’t remember the physical and psychological torment I’ve endured for three plus decades with CRPS.
Forever it seems my memory has kept me in depression. I’m always mentally plagued by the people I’ve loved so deeply who left. I’m psychologically poked and jabbed by the career I lived for and lost. A day doesn’t go by when I don’t grieve the child John and I should have had – the parents, the family we would have been if not for high-impact chronic pain that began at age 21.
With Alzheimer’s I’d also forget the doctors who abused me, who told me I was making up my pain when I was desperately trying to re-claim my life. The years of being alone and bedridden screaming in agony. My bitterness of having virtually no one understand. I’d even forget the simple insults like the pity looks I get when I’m in my wheelchair. No more boulders for my memory rock garden.
So much of our pain experience is tethered to what has passed. In fact whenever I fantasize about taking my life, what I’m wanting to kill is my memory. On any given day I find myself going through my archive of assaults, indignities, losses, cruelties, mostly abandonments. And I constantly hear these same words of anger and suffering from other women in pain.
I even speculate that perhaps our memories amp our physical pain and fatigue. Our pasts are filled with negative feelings that drive depression, anger, fear and sadness. Due to the mind/body connection, our memories may indeed be the hooded ghoul that flares our pain – imprisoning us deeper into the Kingdom of the Sick.
I know I’m not alone here. I’m aware of women in pain who self-medicate with alcohol, medicinal marijuana and/or prescription medications. These substances sedate and provide a means to escape our present and, yes, our past.
But memory, even for those of us who feel up-ended by pain, serves a purpose for good. Our memory can be a catalyst for action, for righting wrongs. It lights the fire within. We know what so few people know by surviving the un-survivable. That memory, that knowledge, that wisdom erupts into super human strength, pushing us forward to make change. To be sure our pasts won’t be repeated for others.
“The strongest souls are forged by the hottest fires.” Indeed. History reminds us that all great social justice movements sprang from the previous generation’s memory of suffering.
I’m certain that if we choose to face the flames of our painful memories, we can make better days for our future sisters in pain. We can be their miracle makers.
Perhaps, in the end, our memories are the greatest gift of all. Something I won’t soon forget.
Cynthia Toussaint founded For Grace, a non-profit that focuses on the unique issues facing women in pain. Her organization sponsors the Women in Pain Conference. She lives in Los Angeles.