Hoo boy, the past few weeks have really been something! But before getting into hospital stays and antipsychotics and whatnot, I think it’s important to talk about something really major that happened in late April: I got a haircut! It had been ages. It was overgrown way before the pandemic. In desperation, I even chopped some off myself at one point. It’s not easy to find someone who can come to the house, and I can’t handle going to an actual salon. Thankfully, Brendan has an old pal whose husband is a stylist; he kindly came over and gave me a trim. Few homebound folks enjoy such a luxury, so I feel really fortunate. If you need a fresh cut or a dye job, I highly recommend Brandon Groswald (IG: brandon_groswald) at Logan 14!
Gettin’ my hair did.
I hate beards, but shaving uses a lot of energy, so I typically don’t bother. However, now that I have this handsome hairdo, I’ve been trying to keep my face relatively clean. Thanks to Abilify, my CFS limits have eased up just a hair (see what I did there?), and I can handle a little more hygiene. I’m more comfortable taking selfies now.
Clean face, no mop.
In any case, the Big Event from the past month was my six-day stay at Jefferson Headache Center, a hospital unit in Philadelphia. I spent three agonizing days at Jefferson last August, and I got about six weeks of significant relief afterwards. This time, I managed to stay longer, and I got some additional meds, so hopefully, I’ll get more relief.
The night before my admission, Brendan and I stayed in a pretty decent hotel suite in Philly. The next morning, I was feeling unusually good, talking up a storm. But just as we were leaving, I walked into the other room of the suite where, unknown to me, Brendan had been watching the television on mute. I only glanced at the massive, silent flat screen, but its bright intensity hit me like a sucker punch to the brain. I immediately fell over. It took about ten minutes for me to regain enough stamina to crawl into my wheelchair. It was a rough start, but we still managed to get to the hospital on time.
In spite of being a migraine treatment center, there were still big windows in my room, with really ineffective blinds. Brendan brought a ton of blackout material and covered them up for me. He did a great job too! For light, we just used my little green Allay lamp–it’s specially made to be less bothersome for people with light sensitivity.
Brendan blacked out the windows pretty darn well.
After settling in, getting some blood work, and taking a quick Covid test, it was time for my PICC line. They inserted a catheter through my arm, all the way up next to the right atrium of my heart. This allows for constant medication drips, much like a chemotherapy regimen. They used an ultrasound to carefully place the line, and they confirmed the placement with an X-ray.
Inserting the PICC line.
Once the line was in, they started a Lidocaine drip, which helps dampen pain signals. They also gave me DHE, a vasoconstrictor; Haloperidol, an antipsychotic that inhibits dopamine; and various other, less important drugs. Honestly, it doesn’t feel great to be pumped full of meds. Pretty much immediately, I panicked and wanted to go home, but my body slowly got used to being sedated & tethered to machines. Nurses and techs were constantly in and out, taking EKGs, getting blood samples, changing meds, and adjusting my heart monitor. Often, I had to correct the nurses about my daily medication doses, which was disconcerting. I didn’t eat much, and all I could really do was sit or sleep. Brendan stayed in the room with me all day, helping me communicate with the staff and silently keeping me company. It was exhausting & intense, but somehow, I didn’t get any migraines or CFS crashes while I was there.
By the time I got discharged, I was basically brainless from all of the Haloperidol. It’s hard to describe, but I just couldn’t do anything. I couldn’t read or play music or scroll through social media or think abstractly or solve problems. I just… stared at the wall. This lasted for about seven days.
We had no idea that I would be so non-functional after the hospital trip! Brendan had planned to go to New Orleans a week after my stay, but he had to delay his trip by a few days to help me recover. I told him it felt like I was driving with the windows fogged–I just couldn’t think or solve problems on my own.
On top of all that, I was having terrible trouble sleeping, and I would get so damn restless that I couldn’t stay in one place for more than a few minutes. I don’t know how I avoided a CFS crash; I just kept moving from my bed to the couch and back, over and over again. After day seven, I was finally functional enough for Brendan to fly to NOLA and see his niece. I toughed out the remaining restlessness, insomnia, and brain fog on my own. It took another week before I felt normal.
Since then, my headaches have been way, way down. I’ve had very few migraines, and I can usually stop them with meds before they kick in. It remains to be seen how long the effect will last: It could drop off completely in a week, or I could feel great for six months. It’s possible that breaking the pain cycle for long enough could reduce my overall headaches indefinitely, even after the treatments wear off.
Considering how many people don’t have access to basic healthcare, I feel pretty damn lucky to have the time, money, insurance, & connections that allow me to try the latest inpatient migraine treatments. It was hell, but if the results are dramatic enough, I might even do it again next year.
Oddly, the punishing, post-treatment restlessness had an upside too. It revealed that my CFS limits have expanded a bit more than I thought. If I’m not glued to a screen all day, I can move around the house a little more. Before the hospital stay, I was starting to move between rooms occasionally during the day, and now I’m trying to lean into that more, as safely as I can. Remaining stationary all the time has not been good for me; physical activity (within my limitations) actually helps with many of my symptoms. It’s a tightrope, but I’m walking it.
While Brendan was away, I wasn’t just suffering though; I managed to survive three (!) different visits from friends. I can’t remember the last time I had three friends visit in a year, let alone a week. It felt good! I have to be careful not to let anyone stay much more than 20 minutes, or else I start to suffer consequences, but even a short hello is good for the spirit.
My musical collaborations have been good for similar reasons lately–working with other people pulls me out of my small world and makes me less self-conscious. Convos & Collabs subscribers heard my latest, “Kids,” a co-write with my friend Tommy Siegel. The song came out great, and I never would have casually written about domestic life like that otherwise. I suppose I tend to worry too much about whether or not a song represents my particular aesthetic; when I don’t think about that stuff, like when I collaborate, I can work way more quickly, and any number of ideas might crop up in my lyrics.
Faye Webster’s latest track is real nice.
The “Kids” lyrics remind me a little of this new Faye Webster track I’ve been digging, “I Know I’m Funny haha.” The languid pedal steel and the conversational, folk-singing aren’t so similar, but I like how she drifts through the sort of random anecdotes that come with a long-term relationship. Little ups and downs, disagreements and inside jokes. No big, painful ending, no thrilling new beginning, just the sort of hazy, mostly pleasant, in-between times. I think that’s what I was getting at in “Kids,” from a slightly different angle. It’s not a big breakup or a new affair, but it’s real, and I like that.
Business Note: For the past year and a half, I’ve been delivering three Patreon posts per month. As a result, I’ve pretty much only had time to work on music for Patreon posts, and I haven’t been able to work on a Soft Punch record for a while. I’d like to change that. I can keep getting you the highest quality material and still have time to work on my own records, if I just slow the pace down to three posts every two months, instead of every month. For a $9 subscriber, that means you’ll see something new every two or three weeks. Still plenty of thoughtful writing and music on a regular basis, but with a little extra room for me to breathe (and more time for you to digest the posts!). Let me know if that’s an issue for anyone!
Hope you’re enjoying a gradual return to nightlife. Stay safe!
PS If you’re still catching up on my health story, here’s the Cliff Notes. If you want these updates in your inbox, head to my profile page, scroll past the subscription levels, & click Follow (it’s free!). If you know anyone who might be interested, please share!