My Story: Our Painful Memories – Friend or Foe?

My Story: Our Painful Memories – Friend or Foe?

By Cynthia Toussaint

Cynthia Toussaint

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.

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There are 6 comments for this article
  1. Steve at 3:38 pm

    Getting on this blog has shown me the most honest, amazing , and resilient people who share their stories and comments that let me know that others also experience what I’m going through. If I can’t meet you in person, at least I do here. Thank you all and GLTA.

  2. Mark Ibsen MD at 8:22 am

    Thank you.
    Beautiful thoughts.

  3. Mary at 10:20 pm

    I was in the very deepest of dark depths! I couldn’t even so much as imagine that there was a flicker of light at the end of the tunnel! But I am thrilled to say I have found the answers I so desperately needed and my life has meaning again! Please no matter what, never, ever give up on yourself! Things can change and for the better FAST! We are all so much stronger than we even actually know! Love you Cynthia, you have been a true inspiration!!!! ❤️

  4. Sara at 7:54 pm

    What a great & interesting post. I’ve been in such a funk lately, because after almost ten years of daily migraine pain, losing my career, not being able to have children, being diagnosed with thyroid disease, celiac, sleep apnea, depression, anxiety and allergies of all kinds, I found out my boyfriend of eleven years was cheating on me & even had a new, serious relationship behind my back. On top of that, I feel under siege from doctors who won’t treat my pain with opioids anymore, one of the only medicines that work for me currently. I’m terrified of having to live in my bed everyday in pain, losing the last bit of contact I have with the “real world”. I would love to just forget everything! But yesterday I thought, if I can get through all of that (even though I’m still going through a lot of it), I must be pretty amazing. Chronic pain patients are very resilient! Too bad the “real world” stigmatizes us so much – they could learn a lot from us….

  5. JoDawn at 12:29 pm

    That was beautiful.
    And you are such an amazing person, I wish I could take away the pain, but on the other hand I’d never want to change who you are. 😊
    I’ve felt the same way about my children, who didn’t get the chance to have the active mother they should have had.
    …but…
    They are so amazing. They are more independent, more empathetic, more kind.
    And that’s something I’d never change. ❤️

  6. Janet Komanchuk at 7:53 am

    Thank you for your well written poi-ant article, Ms Toussaint, one that those of us who have suffered chonic, debilitating pain can identify with. I too considered suicide, an escape from the horrid pain of fibromyalgia, or maybe not.

    “What if I botch my attempt and wind up worse than I am, if that is even possible? What about those I am leaving behind, would I leave them feeling they could have done something to help? What if there is still some purpose to my life? What if there is a light at the end of my tunnel of despair?”

    For me there was such a light. For at long last I did find the unique wellness work that helped me to discover and resolve the numerous unresolved issues in my life, that no matter how hard I tried to ignore them kept resurfacing and making me so terribly ill.

    I am so grateful to be in remission, both pain and prescription free for many years. So grateful that I continued my search for wellness.