By Cynthia Toussaint
After years of coming to accept and make friends with my pain, I’m harshly rethinking that.
While slowly making my way back from a lost lower-body remission with too much time wrangling with 9/10 level pain, waging war on my former friend seems like a good idea.
Two weeks ago I was making steady progress with a comeback in sight. I was up to two-thirds of my mile swim, kicking half of them, and doing my full ballet pilates/feldenkrais workout. I was even walking more again, all without increased pain.
Then I had to travel to DC for a week of patient advocacy. I love travel, so this shouldn’t have been a big deal – but somehow my body was telling me not to go. By my second workday morning, the pain in my left leg was barking. But I ignored it as I still had two full workdays ahead along with travel home.
That night after an intense workday and a late dinner with colleagues, I couldn’t go to sleep due to off the charts pain. After many hours of suffering, I called my mom in the middle of her night on the west coast. She was so alarmed (I’m not a complainer when it comes to pain), she told me to go to the hospital. I accepted that I wouldn’t be able to work my final day, took a Vicodin and mercifully drifted off to sleep.
An hour later the alarm jolted me – and I forced myself up and headed off to the workshop. Despite good colleague support and an oversized, comfy chair they scrounged up, it was too late. My friend, the pain, decided to overstay her welcome.
The flight back to LA was pure hell. My hatchet-hot poker-ice pick pain never let up – and I survived one minute at a time. The next morning after my pain eased some I got back into the pool as generally movement is my best medicine. However this time when I got out, my legs were shaking badly.
That night, the darkness set in as my hope of regained remission was shattered. I called three pain sisters who were all amazing and there for me. But it wasn’t enough. After 35 years of living in a tortured body and new post-remission rules that are baffling riddles, I decided to give up. Ending my life wasn’t what I wanted, but I most certainly wanted to end my suffering. I couldn’t host my friend any more.
As friends are apt to do, she cut me a bit of slack. I slept like a dream that night and woke with little pain and good energy. How, why? I can’t begin to tell you. With near giddiness, I answered the phone when my pain sister Hannah called back. Hannah couldn’t pick up the night before because she was in her own hell-storm of agony. But, like me, the clouds had parted for a spell.
Hannah was over-the-moon worried because I had never sounded that bad on a phone message. For comfort, she told me about a conversation she’d just had with Marianne, a close friend with stage 4 cancer. Marianne shared that “It doesn’t matter what the cancer, pain or doctors bring. They’re not going to get me.”
Hannah paused with knowing silence. “She’s just like one of us, Cynthia. We don’t ever quit, no matter what.” She’s right. And it’s the damnedest thing.
Many years ago I “friended” my pain because it’s a part of Cynthia. And I love Cynthia. But since trying desperately to regain my remission, I’ve needed the pain to pack her bags and do the decent thing. Leave.
Part of me wants to click the “unfriend” button. But that would leave my body and mind in a civil war. And perhaps more importantly, if I did that, would I lose something valuable, even extraordinary?
We women in pain surely have super-human strength. We wake up every day and do the impossible. We stare down the abyss. Then we do it again. And again. We know courage and dignity that others can’t imagine.
It is indeed the damnedest thing.
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.