My life isn’t so much peaks and valleys these days. It’s more prairies and valleys.
Since this pain nightmare started in June, I seem to cycle between total despair and a little less despair. When a loved one kindly offers, “I hope you have a good day”, it feels like a monumental disconnect from my reality. Semantics are powerful, and in response to these well-intended wishes, a part of me wants to scream “But, how the fuck do you expect me to have a good day or even a good hour when my vagina is constantly on fire?”
(I subscribe to a community-forum blog called Chronic Babe, and the founder always signs her emails with “I hope you all are AWAP”, meaning As Well As Possible. Perfect.)
The degree of constant discomfort has made it impossible for me to have a great day, let alone a good day, in four and a half months. No peaks here. The best I get are the prairie days, when I happen to cope a little better than the valley days. On prairie days, even when the pain is the exact same, for some unknown reason, I can look out above the dehydrated field of pain and catch glimpses of my strength and stamina still rustling in the wind, near the horizon. But over the last few days, I’ve dipped into another valley, where I’m weepy and feel hopeless.
But a few hours ago, I was reminded that, while I may not be able to claim a single good day since late June, I can claim good, even great moments. And I just had an especially sweet one, the kind that reminds me: people can be so good.
Writing is one of my coping mechanisms, which makes me a prolific Facebook poster. This is what I wrote a few days ago:
“Twice a week I get IV treatment with an alternative compound for pain. So far it’s not working. And today just having the needle in my arm hurts. And I’m a weepy mess. I seem to cope okay with this pain for a few days at a time and then I hit a wall. Anyway, an old man named Joe, with jeans, flannel shirt, suspenders, and a warm smile that melted my heart, came in and sat in the treatment chair next to me and saw me crying and said, as if my crying was the most natural thing in world “hard day, huh?” Exactly, Joe, a hard day. Thank god for the Joes of the world.”
When I post these kinds of updates, I’m not just sharing a story, I’m admitting and broadcasting a real-time craving for love. You can slam Facebook all you want, but when I post like that, the love often flows from unexpected corners. And each time I read a comment, it’s one more deposit of sweet moment to balance out a lousy day.
Among the supportive comments on this particular Facebook post, was one from a very loose acquaintance named Joseph, who doesn’t live in Boston anymore. Here’s what he wrote: “I will be in town tomorrow afternoon and can offer you a Joe hug.”
I was so touched by this generous offer from someone I barely know, that when I read his comment from my IV treatment chair, for that moment I forgot about the stinging needle in my vein. But being the elusive, slippery, introverted gal that I can be, I didn’t reply to his comment, until this morning:
“Joseph, sorry I missed your offer of a drop-by hug, but the kind offer really made me smile.”
A couple hours after posting my Facebook comment to Joe this morning, I was on the couch with my laptop, just about to research another insanely limiting diet that occasionally helps women with vulvo-vaginal pain, when my doorbell rang.
I live on the third floor, and if I’m not expecting someone, I’m prone to ignoring the bell. But this time, something made me get my ass downstairs, without spying over my balcony, like I often do, to see if it’s someone worth the two-flight descent. (Now that my secret’s out, if you really want me to answer my doorbell, ring more than once.)
I was totally surprised to open my door and see Joseph. But I also knew immediately why he was standing there. So we hugged and I started to cry because that’s how I roll these days. This time the tears fell because I was overwhelmed by his kindness and follow-through. Joe and I never hung out socially. Before he moved, we were just neighborhood acquaintances who’ve gotten to know each other more by the things we post on Facebook.
After we hugged, Joe said: “I wanted to respect your privacy, but then decided ‘fuck it’ and just stopped by. I know we don’t know each other well, but I just think you are awesome, so I wanted to give you a hug.”