This is one of the hardest blogs I’ve ever had to write, because every time I start really thinking about it, “water comes out of my eyes,” as Lucy says. I didn’t expect to get home after two weeks in the hospital and spike the football in the end zone, proclaiming myself all better and swiftly moving on… but I don’t think I expected this either.
If you’ve been reading the incredible women who kept this blog over the past two weeks, you might have a sense of the medical goings-on of my “atypical acute pneumonia”. I thought about keeping the emotional quotient to myself, but I’ve been doing that for a while now, and it hasn’t gotten me anywhere.
Yesterday, Tessa put it best: you pay a weird price for cheating death. The only way I can express how I feel is to recount the worst of it, so I hope you’ll bear with me while I try to sort it out.
By the 2nd day of my hospital stay, I noticed I could no longer do things like play simple games on my phone, hold conversations longer than a few seconds, and let my mind drift. I was already on my fifth day of fever, and the agony in my muscles was unceasing. I had to rock my legs back and forth, in a quasi-cycling motion, just to create a sort of Aspergian sensory-integration coping mechanism. I did this all day and all night.
Into the evening, my breathing got difficult, and each inhalation felt like I was huffing lighter fluid. Worse yet, I could feel my body catch fire, and my temperature shot up to 103°, and I remember thinking, “oh yes, I see, this is how it happens.”
But that’s not how it happens. Instead, you stay alive, and for five solid days, I fought for each breath, pain wracking my limbs, actively wondering how long I could keep it up. It felt possible only if I could just have a break; a short break, even 20 minutes rest, enough to go back to battle again. But I remained conscious the entire time except for a brief respite of Ativan-induced sleep that my wife wrote so lyrically about here.
The hardest part was each night around 10pm, when Tessa had to go home so she could sleep long enough to be up with Lucy in the morning. A few nights I asked her to stay, even though I knew it wasn’t going to happen. She would massage my arms and legs, and tuck me in, but when she left, I felt my hospital bed turn into a little dinghy.
My little boat would be shoved off into the dark ocean at night, and I’d be told to find the land over the horizon (morning), but I had no idea how to get there, or what would happen to me while I was drifting. It was the solitude that got me, even in the daytime, the sense that I was totally alone, even as so many people came and went.
Finally, about four days in, I reached the end of my tether. I begged my doctor for more drugs, I exhorted Caitlin that surely something more could be done, but I was told none of these were an option, because it would decrease my “will to breathe”. Then Tessa told me I was not getting worse, but not getting better, and I’d most likely be in the hospital another week.
Up to that point, I was still living the self-deception that I was one or two good days away from getting out, but that shattered the foundation of my delusion. It was like cresting a desert mountain only to find more endless desert in front of you.
That night, as my dinghy was shoved off into the black water once more, and the hospital quieted to a blank whisper, I tried to sleep, but kept bolting awake with the nasal cannulas and rebreathing mask stuck to my face. I kept thinking they were suffocating me, even though they were the only objects keeping me alive.
I’d pull them off, gasping for real air, and then the blood-oxygen meter would alarm, as my body went into hypoxia. So I’d suction the mask and cannulas back onto my face until the loud beeps stopped, awake and unable to sleep anymore.
It’s amazing how many ropes you reach the end of. It’s also amazing how much misery you plan on bearing, and how much more you’re asked to bear. What I was going through wasn’t all that special, I thought, how many other patients were feeling what I’m feeling? How many soldiers in WWII and Vietnam had lain in a field, wounded, wondering how much more they could take?
I tried tricks – I discovered that if I took mental journeys to places in real life (my house, etc.) that I would be plunged into misery. So I would invent hallucinogenic mindscapes, floating in castle turret rooms full of warm water, drilling holes in the wall for the pain to flow out. Very Heavy Metal, very Game of Thrones, fantasy D&D kinds of places that took me far away from my quotidian world.
Lucy’s self-portrait, on the wall in front of my bed, had gone from being a lovely rendering of her sweet character to a source of… resentment. I couldn’t bear to have her look at me, expecting something, when I had nothing to give her. Nothing.
My misery wasn’t unique, but it was mine. And I finally reached a point where something in me was breaking, actually cracking in two. So I culled back from all the therapy I’d ever had, all the 12-step ideas I’d gleaned, the AlAnon meetings, even Dr. Lucas’ class at Carolina from 1988.
I tried Step 1: accepting that I was powerless over the affliction that was tackling me, and my suffering had become unmanageable. But that was as far as I could get; there was no Higher Power to turn myself over to. I was already beseeching whomever would listen with whatever voice I had left.
So that wasn’t going to work. But then I thought: how can I take away the pneumonia’s power? How can I rob it of its ability to make me suffer? And the answer was immediately clear. I must no longer fear death. And I must no longer fear loss, either mine or anyone else’s.
Rocking back and forth in my dinghy, eyes closed, I chanted very softly, “I do not fear death. I do not fear loss.” Over and over. And as I began to sink in, I began to feel free. I was still in such sad, horrible shape, but I was 5% better, and that was good enough.
The next day, I got the news that my X-ray showed that I hadn’t got any worse. One doctor even called it, “a tiny, tiny bit infinitesimally less bad.” Even though this was supposed to be good news, I allowed myself no more hope. Hope doesn’t matter; I don’t need it; I do not fear death; I do not fear loss.
It was around this time that Salem showed up, having traveled all the way from North Carolina, and a huge turning point happened when he said he’d spend the nights in my hospital room. Suddenly my dinghy had an outboard motor, and then it became a nice little ship, complete with co-captain, one that I could sleep on.
And I got better. In a way, it was worse, getting better, because I could sense how far I’d gone under. But with Salem, and Tessa, and Caitlin advocating for me at the hospital virtually around the clock – and my own body healing – I left the dark underworld and could see being a real person again.
I had another week in the hospital, learning how to breathe on my own once more, learning how to walk without falling, and of course the optimism-suffocating drama of having my picc line tied into a knot, but 12 days into my stay, I was finally let free. My friend Stasia told me that when her water broke only five months into her pregnancy, she lay in the hospital room in September, imagining Thanksgiving and Christmas decorations. It got her through the bed rest and a healthy delivery, when every doctor said she’d never make it.
I dreamed of walking out of the hospital, with my fists in the air, wearing a nice shirt, proclaiming victory. But when it happened, I couldn’t do it. I was just sapped. I didn’t care.
And so I find myself, now a week out of the critical care ward, struggling to find meaning in a world I let go. Of course, snuggling with my wife is immune to such vacancy, and Lucy has resumed her status of a shining lighthouse, and the reason why I still find such irrevocable beauty seeing the world through her eyes. Even her self-portrait has become my new favorite piece of art once more.
But I’ve been searingly unhappy, and not just because the recuperation period has been an exhausting slog. I have trouble finding the motivation for all the little things you need to do in order to be a functioning person. Every act is a force of will, a joyless transaction.
I have no doubt this too will pass, and I’m always lifted from blankness by reading the letters many of you wrote through Tessa, and by the prospect of being at our farm in a few short days. And maybe I’m just a Patty Preciouspants who just needs to get over it; I can accept that.
But those unending days of breathing, the will to go five more minutes, then five minutes after that, for so many days in a row that I would have begged for intubation and a feeding tube if it had promised relief… I feel like it has changed me. I feel like I crossed over to a place that has left me with an accent. Perhaps Tessa was only partially right: it wasn’t just the price I paid for cheating death, it was the price for accepting it.