By Cynthia Toussaint
Losing my lower body remission in December has been devastating, but I keep my chin up as much as I can. Despite that, and despite what many people tell me, we with high-impact chronic pain can’t think away our fallbacks.
As many of you know, I lost my partial CRPS remission after nearly nine years due to my western doctor putting me on excessive doses of cortisone and antibiotics when I got very ill late last year. Perhaps worse than the remission loss has been the near 10 level pain most every day since.
As you can surmise, this is one of the most challenging times of my life. A big part of that is my fatigue at hearing people say I look too good for this hell. So when I accidentally caught a glimpse of the above image John took while I was writhing in pain in the ER the night this whole damn thing started, it was like BINGO – that’s how I feel! I’m just used to faking it to make everyone else comfortable.
Worse yet a number of friends don’t want me saying that I’ve lost my remission. Perhaps this is due to their sadness for me, not having the stomach for a friendship if I’ve physically returned to where I was three decades ago or thinking my remission loss is too close to home, contagious if you will.
Recently when I reached out for moral support, three girlfriends scolded me for using “those powerful, negative words.” Others have told me to meditate my pain away or be grateful for the character-builder this “hiccup” is providing. Most stinging, one friend told me I could make the pain go away by not thinking about it.
Don’t get me wrong, I know these women want the best for me. But denying my lost remission, while making them more comfortable, hurts and keeps me in a place of perpetual phoniness.
It’s been three months. I know my body and I know my CRPS. After 35 years of living with this disease that makes its own rules, I’m feeling it shifting again into the abyss of how-bad-will-it-get?
Last week, when I shaved my kicking laps down to six (from 72), I was in so much pain I got out of the pool shaking, barely able to walk. A long time gal pal shouted, “You just have to think positively!” With that, a realization sparked.
Perhaps these well-meaning, loving women just feel so damn helpless they don’t know what to say. Like all of us with long-term, high-impact pain, I’m not expecting anyone to fix me. The biggest gift someone can give is to allow me to speak the truth and listen compassionately. That’s how a friend can help me accept what is – and begin to move forward again.
On Sunday, I was able to hobble to church where I was surrounded by a loving community. The folk there had noticed my absence and inability to stand. Twice I fell into the bad, old habit of sharing my circumstance with the capper, “But I’ll be fine.”
They wouldn’t let me get away with it. They countered, “You don’t know if you’ll get back to where you were, Cynthia. You must be terrified.” That’s when the hugs and real conversation began.
Remission impossible? For now. I’ll keep you posted…
Cynthia Toussaint is founder of For Grace, a Los Angeles-based non-profit that works on issues facing women in pain. She is also a frequent contributor to the National Pain Report.