Bathroom Monologue: The Catch

The breath caught in Ade Akingbola's throat for the last time as the doctor explained his heart condition. Well, the second to the last time, and as he looked at x-rays and listened to possible surgeries, he calculated to not permit the true last catching of breath for a damned long time.

He explained to the others that they'd be losing their second-best shortstop. How he loved softball, and he'd still come, and still bring the home-made limeade, though he'd add less sugar from now on. That, too, was a loss.

More doctors, these cardiovascular elites called "specialists," explained that the condition was spreading to his lungs. Except "spreading" here meant "atrophy" or "corrosion." In a month, it was in his bones too. How did your heart rob your bones? By being too weak.

In a month the softball season started up again, too. By then he needed a wheelchair. A second wheelchair, actually, a motorized one after he could no longer safely move him. The effort, you know, was often hard on people.

The spring was too hard on too many people. Ade only had to visit the hospital three times a week; his friends had to lose at softball on four. He couldn't play shortstop, he couldn't even yell to support them. He could dump vodka in the limeade, though, and by Week Five, he strongly suspected it was helping more than their coach. They still lost – he'd been their second best shortstop because all but Nelson and Idrissa lacked reflexes – but they were cheerier about it an hour later. Sometimes they played morning games hung over, and no hangover changed how badly they lost. Sometimes they came closer to winning, sliding into first while trying not to throw up on the opposing team.

Ade watched every game from his mechanical chair, a sippy cup of water to keep himself hydrated and an iPhone full of cardio stats he had to monitor. There was, it appeared, an app for your heart turning against you. An app for it taking your lungs and bones with it.

He used the phone to count the unhappy winners. Team after team waddled off the field as softball season grew deep, complaining about their backs, frowning at their bats, squinting at their cars as though they hadn't played a game for several hours, as though softball had been a square traffic jam and the dugouts a miserable off-ramp preventing them from hitting their cars. God, Ade hoped he'd enjoyed playing more than all these winners did. He remembered himself having loved it, but also remembered complaining more than he liked, the mere memory making his breathing speed up, which he couldn't abide. Not if he wanted to postpone the last time his breath would catch in his throat.

Ade Akingbola found his lips smiling – had to raise his hand and feel his mouth to be sure of it, and moving his hands idly like that was no easy task anymore. He was fondling his own smile as a winning relief pitcher, who'd shut out Ade's friends for the last three innings, grimaced, spat chaw in the red dust, and walked for his Volvo. Ade pushed the switch to wheel backward, to get out of the miserable winner's way. The miserable winner wouldn't look him in the face; looked him in the chair, sure, briefly, before ticking his head away. Winning must have been so hard on some people.

My Foot Stopped Working: What Chronic Pain Is Like

It strikes me that in some of my earlier neuropathy posts that I’ve neglected to inform people about my basic health. You know that I’m losing feel in my feet and legs, and sporadically lose the ability to move parts of them. Perhaps you don’t know why the numbness was so immediately apparent.

Since age 13, after some catastrophic medical malpractice, I’ve been in constant pain in every part of my body. It’s been so long that I don’t know how not hurting feels, except for this new alternative: not feeling anything at all. The first time that my toes irrevocably went off the grid, I was terribly frustrated. I’m used to navigating with them, and feeling the twinges of pain in their second-from-last joints as the curl, the bellwethers of how putting my foot down in each step will feel, and how sharp the pain will be in my arch and ankle.

Perhaps the best analogy is to remember the last time you had a really bad flu. That deep ache that settled on your flesh and in all your tissues, that made every movement a deliberate labor and reminded you of all those organs you take for granted. Sometimes one part, like my spinal column, hamstrings or kidneys will ache worse, and the chief pain can even be a means of focusing through the disorienting general pain. The worst is when the fog of pain is so great that I can no longer speak or compose full sentences. That general pain is so distracting, because the reports come from so many parts of the body, that my biggest daily problem can be thinking straight. This has been the last two decades of my life.

It's a little tragic that I miss the pain in my feet. I'm too used to it. The human mind is a remarkably adaptive thing, and at present I'm wondering if I could eventually adapt to not feeling anything at all, perhaps over a course of decades.

I learned to deal with chronic pain, since the alternatives were dying or getting hooked on morphine. I know I’m good at dealing with it because most people are surprised to learn there’s much wrong with me. Argue ableism and disableism all you want, but from my teens on, the ability to blend in with relatively healthy has been a source of pride. Often, also a source of protection. The kid who limps and props himself up against walls is a great target for beatings.

Finally seeing the neurologist on Friday. It's been a long month of no leads or answers. Feeling a bit hopeful today.