Waiting

There’s a traffic light near our house that’s red 88% of the time. I’ve counted. It doesn’t matter what hour, what day, which of the three lights on the mile-and-a-half drive to the grocery store — something turns red on cue. Fifteen, twenty minutes, for a trip that should take four. That seems to be most of the traffic lights that fall under the city’s influence.

I used to think that light was just a local annoyance. This week I realized it’s actually the whole theme of my life, condensed into intersection form: waiting.

We’re a month into Melody’s new treatment. A few more weeks before we know if this is the one that finally works. That’s healthcare in a sentence — hurry up, then wait, not because anyone’s cruel, just because that’s how long a body takes to answer. Emory, as you’ll read about in next week’s episode, despite its size and volume of patients, runs fairly efficiently within the Winship ecosystem — if we were computers instead of humans, I’d say they’re linked with little lag in sync.

Monday, on its own

One vendor pays on a set date. I’d planned around it — needed it to cover my own payments, after already begging one of my creditors for an extension. It arrived two days late. Now it’s arrived, and we wait for it to settle. A different vendor routes payment through a separate service entirely — 24 to 48 hours to post, fees taken along the way. Wait. Wait. Wait. That was Monday, all by itself, before anything else even started. By Thursday, all the payments were in and settled, minus whatever got skimmed off the top along the multiple stops.

Tuesday. Emory day.

Usually it’s a Monday thing, so for one delusional moment I thought I might get an actual day off this week — we both did, in fact. Monday was not our proudest day, just one of those whatever-can-go-wrong-will days. Emory, though, went surprisingly well and moved more quickly than usual (we know the flow by now). Great, I thought — we’d be home sooner, and payments should be there today.

Instead: I forgot to lay her protein out for dinner, and Melody was coming off a chemo appointment, not really interested in eating — which means I break out the ancient mystic techniques, something with the right smell and familiarity, and watch her flip from “don’t mention the word food” to “I’m starving.” Popeyes — the one food that works no matter how bad she feels. I had a “visa card” from a vendor meant to cover it, except it turned out to have more restrictions than places willing to take it. Delivery: failed. Ordering direct: failed. Fine — I’d drive. (There’s a whole separate reason I didn’t want to drive.) That same adventure would rinse and repeat, for different reasons, at a different location, later in the week.

I got there just as the food came out — faster than I’d ever seen — and then watched the card reader “fail” on chip insert, twice, quietly placing a pre-auth hold each time before the third attempt just declined outright. I called. Fifteen minutes on hold. An agent who recited my own transaction history back to me, told me how I felt, and — when I said plainly that I’m Autistic and just needed her to stop repeating the FAQ and actually help — told me I wasn’t. Three hours into the simple task of feeding my recovering wife, wrung out from Emory, wrung out from the drive, and now this.

I got the food eventually. Walking out, there was a rainbow over the restaurant’s sign. I’ll take it.

Rainbow over the Popeyes sign.

The back pain nobody ignored

Last week’s blood pressure experiment worked — but it came with an uninvited passenger: sharp, stabbing lower back pain, worse by the day. Here’s where the week actually surprised me. I sent a follow-up note to her team, based on the cardiology appointment suggestion — a routine update with an unrelated scheduling question tacked on. The doctor didn’t just answer the question — he followed the thread on the pain. Doctor and nurse both kept responding, fast, for days, until they suggested the ICC. Melody’s favorite place in the entire medical system: quiet, private, built for patients like her instead of the general chronic-illness churn. She really does respond better there, usually.

I asked point blank — should we call and triage, or wait until Monday? (It was near the end of the week by then, and we already had Monday’s appointment coming.) Melody is like a battleship — she can push through at levels that would shock you. But before we even had to decide about calling, the ICC called us. A slot offered, then a callback because someone else took it, then a time held just for her. Not a general ED wait. Not hours spent proving you’re sick enough to be believed. A room reserved for Winship patients only, at a scheduled time, during what they told us was already a busy stretch.

Remember how this series started?

That’s rare enough to be worth writing down.

Small good things, logged for the record

Two audition redos got submitted. I’d failed to set the right setting originally, but near the end of the sixth hour, I realized an easier fix I could have done in about an hour for both. Such is my life — if I’d just set it correctly the first time, I wouldn’t have spent two days in the booth fixing it. Two new Voices auditions came in, one client handed me four more projects — technical, medical terminology, right in my range — and an unexpected blessing arrived in the mail. Both vendors finally paid what they owed. Melody signed on to a home-hemodialysis research study — it involves me too, with a small stipend — and now she says, only half-joking, that she has a job.

That’s life. Ours just seems to be more of this kind of fun, over often very little. It reminds me: when you say you’ll do something, you should — especially when you’re paying the lowest-level contractor or the smallest amount. That small payment may be a big deal to them. Food for thought.

The night that wouldn’t end

I’m not sleeping much these days. No particular reason — just not sleeping much. Awake around 3am most nights whether I want to be or not. This week: up at 1, back down, then jolted awake at 3:13 by silence — the house’s power had blipped on a breaker, and the machines that keep Melody’s room at 30 degrees with an air purifier running had gone quiet. That hum is what lets her sleep. I flipped the breaker, and our bedroom dog got up with me, which meant she then spent the next twenty minutes loudly scratching and chewing at dry skin — one of those sounds that, for someone wired like me, is close to unbearable. Then she pooped in the foyer. She never does that. I think she was just tired of me yelling at her to stop making the noises. Fair enough. Up for good by five. This is what caregiving looks like at 3am. This is what being Autistic looks like at 3am. This is just Tuesday. (Well — actually Friday.)

The cost underneath the cost

Two weeks now of nausea and vomiting, worse this week, her anti-nausea medication not doing what it used to. Waiting on the ICC appointment, she stayed still and quiet on Saturday, mostly just to keep from throwing up. For anyone who doesn’t live in dialysis-world: everything is calibrated against a number called dry weight — pull rate, the math, the whole apparatus — and sometimes you only find that number the hard way. She found hers the hard way, and it added to her suffering, but it’s just one of those things that come with the territory. Mixed together, she’d been miserable for most of the week — both ends, and dialysis every other day.

She’s not feeling great. Her labs, though — her labs are great. (That’s the joke we tell now.)

I caught one bright surprise: I won tickets to a Coral Reefer show, good seats too. Then the ICC appointment got set. I’m a Buffett fan, but even with free tickets, I couldn’t make it. My last set of tickets, I also couldn’t attend because of Melody’s health — I’d gone annually for as long as I can remember. That last time was with her, before she started dialysis. Goodness, it’s been a minute.

Saturday night, the sky opened up right as we needed to leave, so we gave ourselves about an hour and a half of buffer. We stopped at Popeyes — our favorite, and by now you know why — forty-five minute wait, and they still managed to get the order wrong. Then, right before the highway, one traffic light in the next county over was completely out. Should’ve been a simple four-way stop. Instead I got a fresh reminder of how many people on the road could stand to take a refresher driving course. We rolled into the appointment ten minutes late.

By the time Saturday rolled into Sunday at ICC, I was closing in on thirty-six hours awake. The working theory: medication side effects. She needed a transfusion. It worked — blood pressure had started at 180, climbed after, and peaked at 235 before it settled. Twelve hours in, another round of vomiting. Chronic illness treatment causing its own damage is nothing new — chemo patients live this same trade every day — but knowing that doesn’t make the bone pain, rated 7 to 9, any easier to carry. Or the nausea. Or what came with it.

“I’m tired of being sick.”

What. A. Week. This week’s laundry check: only three days to get it done — the simple wash-dry-fold-put-away. Three days, for my laundry.

That’s the wait underneath all the other waits. Not the traffic light. Not the callback. Not the payment clearing. The wait for the medicine to just, finally, work.