V. H. King's Ink

Last night I had dinner with a friend I met just before the pandemic started.  By the time you read this, it will be weeks later—because they were visiting for the weekend of the 4^th.  So this isn’t your last night, but it’s mine, because time is a strangely (un)shared thing.  Point being: I went to dinner and I met the friend they were in town to see.

This feels funny to me—to say I met someone.  I feel like I haven’t met anyone since the conference where I met the friend who reached out to me.  I have, probably, but my memory is middling at best.  I was looking forward to a casual evening out, plus an excuse to dress the tiniest bit fancier than I would have.  For me, that means not wearing a t-shirt.  The distressed denim shorts and my favorite pair of Vans stayed, but at least I had a fresh manicure to spice things up.

I never went out much—even in undergrad, my friends and I were more likely to watch shows in our dorm and make snacks than to go out to restaurants and bars.  In grad school I was always working or studying while my body was falling apart in the background.  And then after school it was just working and dying. 

The inevitable questions came up over the course of the meal. Where was I from? Had I lived here long? And the kicker: So what do you do? I gave a wry laugh, a gracious smile, and said Nothing.  My answer was met with laughter and I wish!—which I had expected, and even counted on, because it gave me time to figure out the rest of my answer.  The standby the last year and a half has been something along the lines of I’m either going to doctor’s appointments or doing paperwork and every now and then I get a break before more appointments.

Usually that’s just uncomfortable enough for someone’s sad face to flicker through as their brain rehashes my words to find a positive spin.  Well, it seems like you’re getting better!  Aww, I hope you get to rest.  You’ll be fine, you just have to give it time! 

I usually smile and nod at this part and the small-talk window slides past without me having to do much else.  Then it’s on to the appointment, or the phone calls about the appointment, or the paperwork I need to file.  But this was dinner, with friends, on my own terms.  So I told them—

“It’s been a transition.  When I have time and feel up to it, in between appointments and paperwork, I like to write and draw.” 

The conversation meandered, and when it circled back to my art, I offered a few pictures of my recent works.  But that was it.  There was no diving into Tragic Back-Story. I wasn’t pitied.  There was the understanding nod—because of course it’s hard to transition your life when disability progresses—but there was nothing in the conversation or body language that relegated me to some broken doll to be left on the shelf, only to be smiled at with sadness and shame. 

I don’t often get to talk about my life outside of a medical perspective or my work capacity.  Even my extended family mostly asks how my health is doing, but not me.  And on that front, the news might be disappointing to them.  I’m not getting any better.  I have no career or social prospects for them to brag about or be proud of.  In some ways, my life is boring at best but mostly depressing.  To them, I had so much promise—and now it’s wasted.

They miss the vision they imagined my life was, assuming I was on the up and up.  Undergraduate degree, grad school, professional conferences, full-time job, committee chair.  Higher rungs of success for them. Deeper levels of hell for me.

The friend I had dinner with, I met at a professional conference in March 2020.  Lockdowns were in place not two weeks later—which was fine by me, considering my body and splintered apart after spending three days walking a dizzying mount of stairs and halls and streets.  I didn’t have any mobility aids back then, but I ordered a rollator immediately after that conference.

I find it harmonious to consider this return—that when I first met my dinner acquaintance, I was at the edge of a cliff, and that when we met again four years later, the dust has mostly settled on the canyon floor.  And from this new vantage point, I met another friend.  I spoke in my own words of my lived experience, without it being exaggerated into a catastrophic tragedy.  Because while my family might miss the trajectory of their dreams for me, I can do without. 

When I was working, I was constantly in pain.  I still am, but I don’t have the stress of keeping up with a never-ending landslide of forms to process and emails to answer.  I don’t miss my body screaming for a break and being forced to smile through it just to get through another meeting. 

I don’t miss there being an 80% chance that I might end up unconscious before the next sunrise.  I don’t miss sleep paralysis and night terrors and seizures.  And in the aftermath of that nightly gauntlet, I don’t miss slogging through the next day, suffering through another week of attempting work when my body was so clearly destroying itself.

I don’t miss wondering if I would end up in a coma, or die in my sleep, and no one would notice for a week because I had no one.  I don’t miss wishing for that to happen, just so I could have the smallest respite from the horror of trying so damn hard not to die. 

Lately I’ve been getting used to my disability progression in new ways.  My mom says I have so much going on, and she wishes we could trade places—so that I could enjoy all the things she’s been able to.  I think she sees a long life ahead of me, full of…more pinched nerves, splitting migraines, cloudy memories, and overstimulated everything. 

Maybe my life is that, but it’s also resting when I need to.  My life now is choosing if and when I push myself beyond my capacity.  My life is being able to choose fatigue in order to show up for the people I love in ways that are meaningful for both of us, instead of that same fatigue jeopardizing whether I’ll make it home safely, or live through the night. 

My body needs what it needs and I’m on a path of greater agency to say how I can provide myself with space to rest and room to grieve and time to process what my life has been up until now and what I might want it to look like.  At dinner, we talked about a Black artists exhibit that was up, along with a Black Arts Market happening the next weekend.  I highly recommended the exhibit and mentioned I would be at the arts market.  My friends lit up with interest and asked—

“Oh, are you tabling?”

I tilted my head and, from the safety of my reflective sunglasses, I looked over their shoulder to the evening sky.  Blue with promise of a sunset worth seeing; small clouds sailing their way across mirrored skyscraper windows.  I smiled.

“I’m not there yet, but I would love to one day,” I said.  “It’s something I want to work my way up to doing.”