Chronic

it’s very hard to accept that yrmama won’t get well.* Evidence of that difficulty is that I really do think I will get well soon, but genetic collagen defects are forever, man. Plus my advanced age is kicking it in. For example, yrmama was limping like a zombie yesterday, swaying stiffly side to side and constantly on the verge of losing her balance. My foot hurt, but I wanted to keep working, so I did. It was 70F, sunny and I was planting things, clearing brush at the edge of the woods and filling the car with mulch. I like to do stuff. I hate sitting. But finally I had to stop because it was painfully ridiculous to be wobbling around like that and dragging my leg while trying to use heavy tools. Giving in to the big pain in my foot led immediately to feeling bad about myself: I thought I had this foot thing fixed, I thought I had this under control. Maybe I haven’t been doing the exercises the PT prescribed dutifully enough, maybe I should have worn different shoes. What’s wrong with me? Why can’t I do this when everyone else can? 

Until about a year ago I always said, “It’s going to hurt no matter what so I might as well be doing something I like.” Then I began a summery descent into a whole new realm of pain that led to spine surgery. During that un-belayed descent my doctor advised, “This isn’t the time to power through, yrmama,” and “this kind of pain is humbling.”

You’ll be glad to hear that yesterday I surrendered relatively early in the pain spiral. I washed off the poison ivy, took a big slug of CBD and some gabapentin, taped the bottom of my foot within an inch of it’s life and settled my butt down to work on my Etsy shop. I practiced saying to myself, “yrmama? You are doing a good job. The pain comes, the pain goes, some days you can do this, some days you can do that. It’s not about you. It’s not something you can fix or will away. Be humble.”

Meanwhile, my ego had it’s fists all balled up; “So now I’m supposed to obey pain?”

I replied firmly but compassionately, “yrmama, it’s not about obeying or not obeying. This isn’t about effort.” So Buddhist.

I always believed that I was the weak one, the weak willed and weak-bodied, because everyone else seemed to be accepting ~the way this feels~ (aka life in a human body) so much more gracefully. (Or being a huge pain in the ass and complaining all the time. It’s binary. Either/Or.) They must be better at tolerating the pain, they must be better at exercising/choosing shoes/carrying things/running/throwing balls for the dog. What stamina they have. They’ve clearly done enough push-ups, or something, that their elbow doesn’t pop out of joint when they push a full wheelbarrow. Since the solution to my inadequacy was clearly to be stronger I went to fitness classes at the gym five days a week and lifted more weights afterwards. But when I turned fifty everything that was circling my whole life came home to roost.

It turns out a lot of people actually go about their days and activities with ZERO painful body parts and think that’s entirely normal. When they complain about something hurting it’s because it didn’t hurt at all before, not because it’s worse than normal everyday baseline pain. Who knew?

yrmama says, “get yourself some equanimity.”

*But seriously, none of us will. We will not survive life. Except – Great news! Quantum physics!

p.s. my brain is still saying, “yrmama exaggerates. yrmama is a whiner.”

Pete Buttigieg at Wildwood Smokehouse – May 18

Look. Listen. I was there, saw Pete IRL and left partway through his speech drenched in that greasy kind of sweat that precedes keeling over and embarrassing oneself. For me the best parts of the event were the new best friends I made in line outside, and the second group of new best indoor friends crammed into a corner with me for the second  hour of waiting. 

Both groups were of my favorite demographic; women 10-15+ years older than me. Among us there was genuine enthusiasm for Pete and shared dismay at what we’ve let things come to. We wondered what it will take to get “young people” behind Pete the way they were with Bernie last time around. We ranked our favorites, we compared notes on the various campaign events we’ve been too, we admired one another’s fantastic taste in shoes and eyeglasses. In each group ladies leaned near me and asked in a confessional tone of voice if I thought Pete was “electable.” I reminded them that Donald and Barack weren’t electable either and urged them to not try to second guess their true affections. We talked about Roe v Wade and our embarrassment when we catch ourselves feeling critical of female candidate’s gestures or tone of voice because, WTH, that’s so sexist. In two hours we had time to cover a lot, including our favorite parts of his book, The Shortest Way Home, and how Pete inspires a kind of maternal protectiveness and pride in us. I think we were pretty unanimously all in for Pete.

I heard that the venue officially holds 500 people, but that was a handful of hundreds short of the crowd that showed up. I was in physical squish contact with everyone around me and I think that was a nearly universal condition. The HVAC was inadequate. Pete came onstage once they had packed everyone in and gave us one of the best ever renditions of his stump speech (according to someone I know who has watched A LOT of them on Youtube). But by then things had gotten hazy for yrmama. A woman reached through the crowd and tapped me on the shoulder. “Hi yrmama!” I mirrored her enthusiasm, “Hi!” but had no idea who she was. She wore a name tag but the only person I know with that name lives in rural Ontario. I was so confused.

*Late Breaking Edit: I’ve been thinking about the bit that follows the last couple days because I’m not happy with it. But I’m leaving it. ——–> The conclusion is wrong. ———-> This is right: Power-crazed volunteers will always exist and that’s okay. Victimhood though is useless and not at all yrmama’s brand. She wants to be more ready to stand up for herself. There’s no shame in pain or autonomic “dys”function. There’s no shame in anything because we are just little organized blobs of energy making things up as we go along. Electrons have a moral charge of zero.

Haziness postscript: I left while Pete was speaking and almost embarrassed myself even more by crying in public from disappointment.  I’ve been feeling pretty good lately but had significant back pain that day. Indeed, during the hour we waited outside, my new best friends and I, I was happy to stand. A friendly volunteer patrolled the line offering folding chairs to the gimpy. After about 45 minutes I took her up on the chair not knowing how much longer we’d be waiting. She repeatedly assured the gimpy that there was ADA seating right inside so not to worry. 

But the ADA pen was guarded this time. (Give a volunteer a nametag and a job and the power just goes to his head.) The guard looked me up and down, the cane, yes, but also yrmama’s tanned and muscular limbs. He said, “Well, can you stand?” yrmama said, “not the whole time.” “Can you climb up those stairs? There’s seats up there and I’d rather you went up there.” The “seats” were barstools which aren’t so great for bad backs but he’d successfully shamed me up the steps so I decided to stay and see how it went. How it went was it got more and more painful.

So that’s the lesson for today. Invisible disabilities, like those caused by Ehlers Danlos, are real. Ehlers Danlos, in fact, often gives one super-soft skin not prone to wrinkles hence my perpetually youthful appearance. I look strong because I exercise, and yes, people with chronic pain can exercise. I look good, but not looking as raggedy as I feel sometimes is one of my superpowers. People generally don’t fake chronic illness for the immense social benefits it affords them. They generally fake being okay so they don’t have to deal with explaining themselves all the time.