On Disability

It happened in October 2023. Believe me, I wish I could put a finer point on it — the SSDI system loves precision, expects it from you, in fact. “When did you become disabled?” they ask, as if you’re supposed to remember the very hour you “got sick.” The minute your body started rioting against you. The second you slipped the category of “employable adult.” With how distant and mercurial the whole welfare-state apparatus appears from the outside, you’re encouraged to be as specific as possible about the nature and timing of your disability. Give as much detail as you can, even if you don’t think it’s relevant. Who knows which crumb of data will be the one to tip the scales in your favor?

Anyway, I had just flown home from Edinburgh, where I’d been attending my own graduation from the Creative Writing Master’s program at Edinburgh Napier University, when I started to develop a tickle in my throat.

Now, I’ve had Covid plenty of times — that’s what we’re building to, by the way — and I’d always made a more-or-less full recovery. Don’t get me wrong, there were bouts of what we’d now call “long Covid” here and there: I remember a month or two where I had to stop taking the stairs on Napier campus the first time I caught the bug over there. But those bouts of disease always burned themselves out before they could do much lasting damage.

This time was different.

~ ~ ~

I think the key variable, ironically enough, was my desire to improve my health; I’d joined a run club some months prior, and with few other social engagements on the calendar, I was loathe to give it up. That was stupid of me.

Before, when I’d been sick, I’d kept my activity level to a minimum. I’d just sit around the house, bored out of my mind, patiently waiting for my body to give me the all-clear. My natural laziness worked to my advantage, I guess. But I was trying hard to be a Different Jed in 2023, doing my best to get in shape, to socialize, to scrap my life back together after a couple of trans-Atlantic moves had ripped it apart.

I remember jogging about 2 or 3 miles one night alongside my wife and a couple of our best friends. Upon returning to the bar we’d started at, we sat down for our usual round of dinner and drinks. But when the conversation kicked up, I remember realizing that I simply could not follow what was being said.

I know what to call that feeling now. It’s called “brain fog,” and it’s become my worst nemesis over the past 3 years. It creeps in when I overexert myself in any way: physical, mental, emotional, or social. If I dare to drift into that much-vaunted “flow state” while I’m writing, for instance, old brain fog will come by to snatch me right back out of it. It robs me of my wits and my ability to focus, turns me into this weird, guileless, childlike shell of a man for hours at a time.

Another thing I know now is that I should have listened to the dread I felt in that moment at the bar. I should have stayed away from physical and social activity for a while, given my body and my brain time to recover. But inaction doesn’t come naturally to an otherwise healthy 32-year-old man. With vanishingly little public guidance on the dangers of long Covid, how was I supposed to know I was driving myself into disability?

~ ~ ~

I’ve had Covid at least 6 times.

Every time, I come back sicker.

The virus seems to view me as a piece of prime real estate, and I wish I knew why. Doctors can’t seem to detect anything weird about my immune system, and believe me, they’ve checked. As far as anyone can tell, I’m just Like This. Genetically predisposed to pick up this virus again, and again, and again, no matter how vaccinated I am, no matter how often I mask, how thoroughly I sanitize my hands after touching anything out in the world.

Anyway, I should be building to a point right about now, shouldn’t I? Let’s see… how about:

No one thinks about disability until it happens to them.

Of course, now I can’t stop thinking about it. It hangs over my life like the shadow of a child’s Reebok over an ant, threatening to crush me if I step a toe out of line. Prior to the pandemic, I was gainfully employed, sharp and lively: not exactly a social butterfly, but far from a shut-in. Now, I’m lucky to be able to leave the house, and anxious whenever I do. I don’t know when the next infection will hit me. I might pick it up along with the milk and eggs next time I manage to get to the grocery store. My spouse might bring it home from work. My friends, who would never wish me harm, might nevertheless infect me yet again with another course of this life-ruining virus.

Oh, another point for you:

The pandemic is not over.

I feel like people say that all the time, especially vaguely lefty people like myself, to the point where many folks outside my social milieu have written it off as another tedious socialist catchphrase. But it’s demonstrably true. The virus is still out there, still mutating around our countermeasures. People are still getting sick, still dying. Still developing sequelae. You will catch a variant of it again. I’m going to do my damnedest, but odds are, I’ll catch it again too.

~ ~ ~

All this would be… well, not exactly tolerable, but a touch more reasonable, if I could get on disability. But as far as the US government is concerned, long Covid is not a recognized disability in and of itself. And Chronic Fatigue Syndrome (the sequela of COVID-19 that most closely matches my case) is a pretty hard sell. It’s not like there’s a blood test you can upload that says “yes, this guy has Sick and Tired Disease, give him some money so he can start trying to get better.”

I’ve learned that the default stance of the American government towards people with disabilities is suspicion, if not outright aggression. It’s always up to you to prove that you’re not “faking it,” as though anyone would sign themselves up for the kind of life I’ve been living. It’s up to you to schedule appointments and attend follow-ups and pay out the nose for specialists and stress tests and physical therapy before the government will give back a cent of your tax money. Nevermind that one of the hallmark symptoms of CFS is an inability to see to daily commitments. It’s a catch-22: either you’re well enough to fill out all the forms and schedule all the tests and visit all the doctors within a 100-mile radius (therefore not severe enough to warrant a disability claim), or you lack the energy to make the appointments in the first place (in which case, good luck proving it!) It’s enough to drive a man crazy.

I don’t think I’m all the way to crazy yet, by the way. But some days…

Some days I look ahead and I’m not sure what I see. The future stretches out before me in a heavy blanket of gray, fizzing like TV static. Will I improve? It’s possible. There are plenty of good-hearted doctors out there working to help people like me, and science marches on despite the current administration’s hostility to the field. But will I worsen in the meantime?

Without knowing which way the road is going to break, I can’t plot my way forwards. All I can do is take things day by day. Write a little, when I can. See my friends when I have the energy for it. Stretch my dollars as far as they can go. Spend them in bursts when I’m feeling lonely. I’ve taken up MMORPGs again with the launch of Everquest Legends, which is never a good sign, but at least that kind of game lets me exercise my social muscles in a limited fashion. Your people skills decay if you don’t put them to work, you know.

For now, I’ll leave you with this: reach out to your disabled friends, if you have them. You don’t have to have any particular reason, just say hello and ask them how it’s going. Invite them to vent — they probably need to. Talk therapy is great, but in my experience, there’s no substitute for a good old-fashioned gripe session with a friend.

Okay, that’s it! I hereby give you permission to go think about something else for a while. Me? I’m gonna go take a nap.

-Jed