Working through a hard thing

Today is a hard calendar date. 

It was January 19, 2021, that I woke up in excruciating pain, unable to move my right (and dominant) arm. I spent the day in an Urgent Care, mystified every doctor and NP I spoke with, and was sent home with a sling and a bouquet of painkillers (which I had to stop taking after a week because they caused my stomach to bleed). That same night, I wrote about the experience on social media humbly and even with a note of gratitude. I realize now that I didn’t write that way because I felt that way, but because I expected the crisis to be short-lived. I expected things to go back to normal, because they tend to do that. I’ve been very lucky that way.

For five weeks, Galen had to help me get dressed for work and church, and get undressed at the end of each day. He brushed the side of my hair that I couldn’t reach. Once he tried to help me put my hair in a ponytail, but that was disastrous so I learned how to do it by myself by becoming a bit of a contortionist. Much of that sounds nice and intimate, but if you’ve ever worked with or seen an elderly person who needs help but doesn’t want it, go with that image instead. It is humiliating, not being able to dress yourself – even when it’s in front of the person who makes you feel safest.

It took a few weeks to get in to see an orthopedic, who told me that I had Parsonage-Turner Syndrome. Google it, if you’re curious – it’s wild. PTS is a neurological disorder that nobody really understands, but it seems to be brought on by a virus (like the stomach bug I had the weekend before my arm stopped working) and it convinces the nervous system that a specific area (generally an arm/shoulder combination) is in intense pain, when nothing is actually – structurally – wrong. The doctor said to wait and see, because most people’s symptoms go away within 1-4 weeks. 

I’ve spent the year since waiting and seeing – when I’m not hanging out in the clinics of other specialists, that is. Everything has been imaged, all the nerves have been zapped and all the responses measured, my blood has been checked for irregularities. Everybody agrees that the original answer still seems to be the best one, so that’s the one fact I carry with me to each new doctor I see. But nobody knows for sure, so everybody asks me the same questions: Did anything unusual happen before your symptoms started? Did you lift anything heavy, or do any unusual movements? Do you have a history of shoulder issues?

Add to all this the fact that an intense pain started in the right side of my abdomen a few weeks before the arm incident, and suddenly all answers (except PTS, apparently) get blown out of the water. Did the side pain cause the arm pain? Did the arm pain cause the side pain? Are they related at all? No one knows.

There’s no way to talk about a hard thing in your life without sounding self-piteous or relentlessly obsessed with your own tragedy, particularly if you’ve mentioned it before. But for various reasons, which I’ll probably talk about some other time, it’s important to me to talk about it a little today. I don’t have a grand conclusion to any of it, no bow to tie or positive spin to spin. Today is a reminder that last year, 24 hours ago, I could get something down from a high shelf, adjust the shower head, strum a guitar, or write on a whiteboard with my right hand. It’s just hard.

Now, thank God, after those five weeks (and except for a month-long relapse to the “acute stage” in June and a huge general set-back in late December) my mobility has increased some and the pain has gotten manageable. I can dress myself in the morning. I can, actually, look like a totally normally functioning person as I go about my workday. My elbow stays at my side, that’s all. And most of the time it feels like a giant cheese grater is stripping bone away.

This has all obviously caused a big shift for me in many areas – physical, emotional, spiritual, relational – or at least shaken them up a good bit. The most recent change is that I notice every time something doesn’t hurt. And I don’t even mean that in a sad way; when the thought hits me that the thing I just did didn’t hurt, or that it hurt less than it did a while ago, it comes from an actual sense of gratitude and happiness. It’s like a barrage of spontaneous, positive thinking, and here’s the dumbest thing: I’m can’t accept it yet. Instead of feeling glad that I’m generally more mindful of gratitude and small mercies, I get mad at myself. Why be grateful for something that should be normal, that was normal?

That’s one of those things you never say out loud, because as soon as you do you know that it’s idiotically selfish and immature, but that’s where the battlefield is this week. Celebrate small wins or berate them. Accept current limitations as normal or keep trying for what you know as 100%. I know which option sounds more thoughtful and mature, but I also know which one sounds like accepting defeat.

A good friend let me cry in her office for an hour today while I talked about all of this. She has been through all of it herself and is farther down the road than I am. I have a lot to learn. I’m terrified of learning it.