It’s a rough day. I wake up sick. Nauseated and in pain. My world spinning.
I text Justin as a heads up just to let him know. In case I get a migraine and develop temporary aphasia. It doesn’t happen every time I have a migraine, but perhaps three-quarters of the time when the blood vessels swell and press against my skull, the ones affecting language are compressed, and my speech turns into a jumble of words. And the language of other people becomes inscrutable. It’s salad speak in, salad speak out. A sea of concepts with no meaning.
That’s always been the most debilitating aspect of my migraines. Not the pain or nausea. Those are no fun of course. I’m in agony, but I can still function.
No, the worst part is having my words stolen from me. I can’t read or write. And I speak nonsense.
The first time it happened, my partner at the time thought I was having a stroke. Especially since when I have a migraine, my vision narrows to the point where I’m almost blind, crowded out by constellate phantoms, visual noise not unlike what crops up when you rub your eyes too vigorously. Or look too long at something bright. And as it usually does, during that first migraine, one half of my body had gone numb.
That was alarming enough for me and for him. But when I lost the ability to communicate, he’d driven me to the doctor. They suspected migraine immediately. Gave me a series of injections, which cleared everything up. But my systolic blood pressure had been nearly 200 mm Hg when I first came in, so they’d ordered a CT scan to rule out a stroke or any vascular damage. Which was clear, thankfully.
The first few years after that initial episode were difficult, while we worked out an effective management plan. They sometimes lasted for days. I could go in and get injections, and I’d feel better for however long they lasted. But sometimes the migraine would be resistant to treatment and recur. The next day the medicine would be out of my system and I’d rebound, needing to see the doctor again. Sometimes this pattern lasted for a week. Up and down. In and out. My body confused the entire time.
During those times I’d spend long stretches of time locked in a dark room feeling useless. Unable to see. Speak coherently. Or understand what anyone was saying to me.
But with a pattern of trial and error, my doctors finally found medicine that would work. It was expensive, but I could take one pill the instant I had symptoms. I’d get incredibly sleepy, usually crashing for a nap for an hour or two (and sometimes occasionally three or four). When I awoke, my thoughts would be sluggish and slow. I’d feel like someone had stepped on my thinking hose. My thoughts would flow slowly. And I’d have very little energy.
But I could see. I could talk. And if there was any pain or nausea (I don’t have those symptoms either with every event, it depends on which area of my brain’s circulation wants to swell on this go-round), those, too, were vastly improved. To the point where they were either not there at all or I was able to block them out, plunge them into the background of my conscious awareness.
I’d remain in this medicated, low-power state for about 12 hours, at which point 90% of the time that the medicine wore off, I would have no more migraine. (Ever so occasionally, I’d have a rebound event after it wore off, but it was a much better rate than when we treated it with injections and office visits.)
This morning it doesn’t feel like a migraine. But I text Justin just in case so if I do get nonverbal and I don’t respond to any texts or emails during the day or if he comes home and finds me sleeping in the dark that he isn’t worried.
Justin says nicer things in return than I think I deserve. About how he hopes I feel better. Don’t worry about cooking dinner. Do what I need to do.
I smile in real life and then send him a heart emoji.
I navigate away from that window and turn quickly to try to write as much as I can before I go nonverbal, if I’m going to. It’s like I’m flying down the interstate trying to beat a storm that’s coming in. Except the storm is in my own brain.
I know I’m going too fast. “This is going to have so many fucking typos that I don’t catch,” I grumble to myself. The cat looks at me like I’m talking to him. Which is nice of him, since it’s the more benign assumption, that I’m not that weird girl sitting in her office, talking to herself. So I play along with it and say to him, “It’s okay. I’ll fix them later.”
It’s a close call. I just make it. I have the article for my blog up for the day, and I’ve met my external deadlines (stuff I’m writing for other places, other people).
A lightning strike lights up my vision . And it stays there and then begins to grow and spread from that central point, in all directions. Within seconds, it’s starting to obscure my line of sight. I scramble off to find a pill and a can of ginger ale and head to where it’s dark.
Watching Restoration Videos and Refurbishing Vicariously
I weather that mind storm fine. Like every other migraine I’ve had in the 15 years since I first went to the emergency room thinking I was having a stroke.
Later, Justin and I are sitting in the living room watching videos on YouTube. A man is restoring a Commodore 64 in terrible shape. It seems to have been neglected. The insides of it smell like oil and are corroded.
I watch as the man on the screen meticulously takes the system apart piece by piece. He treats the plastic cover with a carefully calibrated soak of hydrogen peroxide that sits outside on a sunny day in a plastic tub covered by Saran wrap. The process is a bit like one someone uses to whiten their teeth. But with a retro computer case. The results are amazing.
The YouTuber details every edge of the computer in a trial and error fashion, testing one substance after another, to remove corrosion.
Finally, once the bulk of the cosmetic work is done, he plugs in the system to see if it works. It doesn’t. Something shows up on the TV he has the system plugged into, but it’s not the proper boot screen.
Through an elaborate differential diagnosis process that prioritizes what’s easy to test for first, he rules out element after element on the motherboard. Before finally realizing that the RAM is the culprit.
The finished system is beautiful. And more importantly, it works. He plays a game on it to demonstrate.
After that video is over, Justin switches over to one in which a man is trying to restore a VW bus that sat on someone’s lawn for over 30 years. The hippie van is plagued by strange nests that remind me of what’s left over when you run a lawnmower through fallen leaves. But there’s an undisturbed Pink Floyd 8-track sitting next to the driver’s seat. This shit is for real. This is the real deal.
It’s quite a production for the guys to even get the van out of its resting place. They don’t have a great winch or a great line. So there’s this janky process involving boards and backing up the truck they’re using to tow.
Their cable makes truly disturbing noises. Justin cringes with worry. “You’re standing in the wrong place!” he yells at the people on screen. Because at any minute it could snap, crushing them.
But whether what they’re doing is safe, wise, or otherwise, they do eventually get the van up where it needs to go and back to their shop. Where eventually, somehow, mysteriously, after much tinkering and cajoling, they get the motor to actually turn off a new battery they’ve hooked up to it.
“These guys remind me of you so much,” I say to Justin. “Just fixing up things that are old. You love to do things like that.”
He smiles and nods. “I do.”
“It’s one of the things I love about you. You don’t just throw away perfectly good things if they’re broken. You fix them,” I say.
It’s a consumer trend that’s been particularly marked and seems to get worse decade by decade. I remember the broad strokes of it from a documentary I watched with him (we both love documentaries and trivia, that’s the kind of geeks we are, less excited by any given fandom and more into learning about history and how to do stuff, some might call us nerds).
Goods used to be sturdier built. More expensive on an initial purchase many times. But they were built to be fixed, upgraded.
But over time, goods were built cheaper, faster. Meant to be disposable. Most people didn’t want to fix a vacuum anymore. If their cheap one broke, they bought a new one instead.
When I moved in with Justin, I sold a bunch of stuff I no longer needed or used (technical manuals, DVDs, video games, etc.) and bought a really nice vacuum. It was a grand gesture in a way. Since Justin’s a bit of a neatnik. And I’m a stray latchkey kid who was a nomad that lived in other people’s houses and as such have a hard time getting rid of things. Never quite been a proper hoarder, but I relate to them.
I forced myself to pare things down and then bought something to clean with. For my neatnik bae.
That vacuum wasn’t cheap. But it does an awesome job. And it’s lasted longer than any I’ve ever had. It’s been something like six years now and we’re still using it. Justin does maintenance. And a few times he’s had to troubleshoot because it was acting up.
When our oven broke, he whipped out an Arduino and spare parts from the garage and rigged up a new control panel that he programmed custom software for. That was seven years ago. Has that oven been a little janky at times? Sure. Sometimes you need to turn it on and off a few times. But you know, it still baked stuff. (It only just recently died again about a month ago, and we’re now using an air fryer and toaster oven in its place since the fix is more costly this time and we’re looking to renovate our kitchen in the next few years and will install a newer energy-efficient oven then anyway.)
And when I first moved in, you did have to turn on the dryer with a pair of pliers since the knob was MIA. But it worked just fine, too. He’d picked up the washer-dryer set cheap from a guy at work because of idiosyncrasies like that, but honestly there wasn’t anything wrong with it. It worked just fine, or did after a quick diagnostic and a $5 replacement part. Those pliers sat on the top of the dryer and no one moved them. And every time I picked them up and started the dryer, I’d laugh.
When I was a little girl, I’d always wanted to marry Doc Brown or Wayne Szalinski (Rick Moranis’s character from Honey I Shrunk the Kids).
You know, the kind of guy who’d build a Rube Goldberg machine to feed the dog.
And now, here I was, starting the dryer with a pair of pliers. Like Mrs. MacGyver.
Knowing When to Restore and When to Replace
Later as we’re climbing into bed, I ask him, “I know you enjoy fixing things, but there must be times when something’s not worth fixing anymore.”
“Yeah,” he says.
“How do you know?”
He shrugs. “Time and experience, really.”
“Ah,” I say. “Because I was thinking about writing a piece about how I love that about you. How you don’t throw away things just because they’re broken. You don’t treat machines that way. And you don’t treat people that way. I look at how you’ve treated me. I have my issues, but you’ve been so kind. So understanding. But I know the readers will come in and be like ‘well yeah, but sometimes you have to throw something away that’s not working. You have to set that boundary. You can’t keep beating a dead horse.’ And that’s fair. I agree with that. So I thought I’d ask you about where that line is. Might be good for the piece.”
(I did write that piece recently about clear signs it’s time to end your relationship, but I love getting Justin’s takes on things since we often come to similar conclusions but arrive there via different angles.)
“Things and people are different,” he says. “It’s not like that.”
“Ah,” I say aloud. Probably a dumb idea for an essay, I think to myself. And I reflexively feel a little stupid for thinking it was a good idea.
Things Can’t Take Care of Themselves, But People Can. Don’t Throw Yourself Away.
“Things can’t take care of themselves. People can. You can’t really fix a person. They fix themselves. But you can be there for them while they do. And that’s what I did for you,” he says.
He’s exhausted. Seems to drop off to sleep quickly.
As he does, I think on what he’s said. And I realize that’s probably why he loves me and why he keeps me in his life. Not because he won’t give up on me. But because he sees I won’t give up on myself — and that matters.
I try to tuck away that thought for the next time it gets hard. The next time I have a day where my body betrays me by doing something like having a migraine. Or I betray myself by being petty or shortsighted. Or I can’t, for whatever reason, be the person I really want to be that day: Don’t throw yourself away. Don’t treat yourself as expendable. You’re fixable. And you’re worth it.
You might be a refurbished model, but you run great.