My “recuperation” or “recovery” has not been something I can talk about very easily, so when people ask how I’m doing, I’ve lapsed into a stock answer about being tired, and quickly change the subject. It’s also why the blog has been spotty of late; god knows we all suffer from “trauma fatigue”, and all I’m good for is wearing you out.
One of my doctors told me that you can’t expect to feel anywhere near normal for three days times the number of days you were in the hospital. Mathematically, it looks like this:
3x = y, where x = number of days in hospital, and y = recuperative period
That puts me somewhere next week for the physical stuff, and indeed, I can make it up a flight of stairs without thinking about it anymore. But the emotional stuff is another matter, and it probably has less to do with the pneumonia than the mental state I brought into the hospital.
When I regained sanity after my Near-Death Experience, or whatever you want to call it, I remember sobbing uncontrollably while Tessa sat on the edge of the gurney. I told her many things, but among them was this:
I can’t go home again. I can’t go home to the same home.
I need to re-arrange our bedroom so that we’re sleeping facing a different direction. I need my clothes to be in a different place.
I’m okay if you want to move. Ever. I’m okay with viciously rearranging our environment.
I can’t be the same person I’ve always been. I can’t make the same mistakes again, I can’t fall into the same habits. All those self-definitions: “I’m a night person, I’m a person who blah blah blah”, I want to throw them all away.
And there was such freedom in that, such a weight airlifted off my body, that I was allowed this chance to reinvent the things that had never worked, that I could scrape the bottom of my hull clean and glide unencumbered.
Yet the nature of physical recuperation demands your flesh be weak regardless of your mind’s willingness. I’d find myself on the precipice of truly changing something meaningful, and then collapsing in exhaustion. Worst of all, I discovered that I’d never really left that place where I have spent all my life: believing deep-down that I was in trouble, that I had already forgotten something important, that I was not doing what I was supposed to do, and I was already late.
Tessa and I decided that I should take the summer off from work – our jobs allow a certain flexibility, and our script deadlines could be pushed another six weeks. Even if “not OFFICIALLY working” was an illusion (since I’m always thinking about it anyway), the illusion might help me relax.
But now it’s the other things. It’s the old sense of who I was before I glimpsed the underworld, the traits I’ve always hated, stuck to my window at night like bugs desperately trying to get in. I am still trying to figure this all out, as I start over.
Because something good has to come from this. It was too much fucking suffering, too torturesome an ordeal for me, Tessa, Lucy and the others who cared for me, to simply chalk it up to “one crazy spring”. I was given a chance to wipe clean and rewrite sections of my life that weren’t working, and if I don’t do it, the only lesson I can take away from being that sick is “there is only to survive” – and that, my loved ones, is not remotely good enough.
Reaction: Eyes fill with tears wondering how close I might have been to being utterly disconnected from the universe
Event: See entire episode of Treehouse Masters where Pete Nelson builds an Irish cottage treehouse for a couple in Orange County, CA.
Reaction: Cry because the woman does when she finally sees the finished product
Event: Seeing my daughter utterly engrossed in the audiobook playing on the car stereo, leaning on my mom’s dog Hildy, completely mesmerized by narrative fiction as she always is.
Reaction: Feel lucky I’m wearing sunglasses so nobody can see the water coming out of my eyes as I think how unbelievably lucky I am
Event: Alone in the car with my wife traveling up the BQE, she tells me about the conversations she had with my parents as I worsened in the hospital.
Reaction: Cannot speak for sobbing, still so confused about how to go on from here, still so overwhelmed, wondering when I won’t be such a quivering mess anymore
I write to you wonderful people from Columbia County, NY tonight, in the tail end of an old farmhouse, a paradise of air conditioning in a night of tropical swelter. Frankly, it has been hard to follow up on the last blog, because it put quite fine a point on it, leaving me very little wiggle room for a while.
However, life is for the living; one of our defense mechanisms is that we gradually forget the dead. So if I plan on being remembered a bit longer, I have to scoop myself off the thrumming ground and put myself in the way of things happening again.
Commenter SWF said something striking on the last entry: “I dare say that for most of us reading this, had we gone through the same harrowing experience, would not have found literally hundreds – if not thousands – of souls reaching out to lift us up.”
First off, I hope that isn’t true, and that any one of you going through the same thing would have a similar experience. You can bet I’ll be one of them from now on; one of the first things I told Tessa when I regained sanity was that I wanted (or really, required) to be of service to anyone else who came close to the same darkness I had.
Secondly, I’ve used SWF’s comment to be a rallying cry for my own bones, to get the fuck out of bed, and to believe there is a community greater than the one any of us see every day. It’s awfully easy to complain about Facebook, and god knows I’ve done it for years, but that ends now -the brother-sister-hood we’ve got is to be cherished regardless of source.
I’ve talked about the price you pay for skirting mortality, but there are benefits. Like Michelle H’s fingernails, there are things I find I just don’t worry about anymore. But the greatest gift was receiving the achingly beautiful words from strangers and partial-acquaintances who would never have written if it weren’t serious. We act on nightmares, not daydreams, but when we do act, it’s truly amazing.
Before I kickstart my heart again, I’ll just mention how things are going. Right now, the pneumonia – however it came into me – reminds me of the Hale-Bopp comet in late April 1997. Long past its peak, one could still see it in the early evening, retreating into its oblivion, now wispy and powerless.
Likewise, it’s the nights that still leave me a little plagued, and I cop to a low-level ZZZQuil (Benadryl) addiction so I don’t wake up every 90 minutes not knowing where I am. Staircases are hard, grabbing something off the floor is bizarrely exhausting, and I occasionally feel like I fall through emotional trap doors I never see coming.
So it’s like being young and full of big ideas, then suddenly turning 93 every few hours. I can live with that for now. But enough about me, ladies and gents, how are YOU doing?
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.
Those of you aching for more blogs about politics, food, morons and piss-n-vinegar rants will have to wait, because my recuperation period has taken up most of my mindspace. Thank goodness someone else is writing the blog today, the estimable Dr. Caitlin Reed, who along with Drs. Morton, Sooferian, Goldman and Kuhn, helped me survive through the week.
I’ve known Caitlin for 22 years. All I have to say is this: you know that shy girl with glasses at the party in 1991? You better be a good guy, because she will grow up to save your life.
Here’s her take on my illness, in bullet form, written as a doctor. I’m so glad to have this because, in some way, it might make sense of the madness:
***
Thursday May 30 – Saturday June 1. From Ian: “Tightness in chest that doesn’t feel right. Three days of fever that is unaffected by medication. Early Sunday morning I know it’s time for the emergency room.”
Sunday, June 2. Voicemail from Tessa that Ian’s getting admitted to the hospital overnight for pneumonia and a headache. Sounds like just a precaution. I’ll check in tomorrow.
Monday, June 3. Talk with Tessa. Ian’s had five days of fever, mild cough, bad headache. Had a tough night, fevers, someone down the hall in the hospital is screaming all night. An infectious disease doc is being called. Email from Ian: this is your wheelhouse, isn’t it? Yes. I stop by that evening. To my surprise, Ian is on oxygen, just a small amount, but even this is unusual for pneumonia in an otherwise healthy person his age. He looks pale. He’s warm. His fever spikes while I’m there, and he has shaking chills.
Doctors divide the world into two categories: sick and not sick. We spend years of residency learning this, developing a spidey sense so we can know at a glance which patients we should be worried about. Ian fails the eyeball test. He’s sick.
Tuesday, June 4. Ian suddenly needs way more oxygen. Tessa calls. They are putting him on a face mask. Getting a blood gas. Doing a stat CT scan of his chest to rule out a blood clot in his lung. Moving him to a step down unit for closer monitoring. Good, that’s what should happen.
This time I bring a stethoscope and take a listen. Wet crackles to halfway up the left lung. Not the whoosh of moving air that I should hear. This is not going the right direction. I check the antibiotics: they’ve been changed, appropriately. They are covering a host of possibilities I’m starting to sort through in my mind, in the habitual way that something deeply learned cannot be unlearned.
Banter with the nurses about their shift, my hospital. I want them to know that I’m keeping an eye on him. Ian’s no longer amused. The hospital has stopped being sort of interesting, potential material for the future, a new and different experience. Now it’s frustrating and scary: he is here, he is doing everything he is supposed to do, and he is getting worse.
He shows me a luminous self-portrait of Lucy. I’m glad it’s there in his room. I want the hospital staff to know: he’s a father. A husband. A writer. Beloved by an insanely wide circle of friends. Because they will treat everyone professionally, but if they care about him, they will do their damndest.
Wednesday, June 5. He needs more and more oxygen. A non-rebreather mask gives him 100% oxygen with every breath. This is the most he can get without assistance from a machine. The mask covers most of his face and has a vaguely Darth Vader quality. I am aware that often this is a brief stop on the way to the ICU and a ventilator.
His antibiotics have been changed again, they’re throwing the kitchen sink at him now. On an X ray, air is black and fluid is white. Ian’s X ray shows that his left lung is almost entirely white. His lung sounds underwater and now the base of his right lung sounds similar. He sounds like he is drowning from the inside.
Sitting on the edge of his bed, I promise two things. I’m going to make sure they take really good care of him. And he will not be alone. I don’t promise that he’s going to be OK, because I have learned through hard experience not to do this. I make sure there’s a central line in place in case they need it later in the ICU. Anticipating.
Ian’s breathing is tenuous. He can’t talk. He looks terrified. He wants something for anxiety, for pain. But it isn’t safe. He needs his respiratory drive and medications could interfere with it. I can see that this explanation isn’t satisfying. He’s glaring at me as if to say, “I’m not going to fucking forget to breathe, that’s the only thing I am doing right now.” I say that his doctors are more worried about his breathing than his pain.
He’s conscious but seems far away, deep inside himself. We talk about meditating. He nods, he can do that. Has done that. Will do that. I feel faintly ridiculous because so much of meditation is about breathing and that is the central fact of his life right now.
Thursday, June 6. The ID (infectious disease) doc and I talk. It might be awkward- I’m just a friend, not officially taking care of Ian, but a colleague too, and I’d like to know what she’s thinking and what the tests have shown. No problem. She briefly summarizes his case, and I’m impressed: she has ordered almost every test that I would have, considered the possibilities, remembers even the minor things, like the tomatoes Ian planted in his garden the week before this happened.
Labs are remarkable for a very low white blood cell count; could this be viral? Or early septic shock? We mull this over. ID doctors don’t do procedures, but we pride ourselves on taking good histories and considering all the subtle clues. She marshals the evidence for and against various possibilities: could this be a fungal pneumonia like cocci, and that’s why he isn’t getting better on antibiotics? He did go to Santa Cruz, but he didn’t drive through the Central Valley, the hotbed for this disease in California. What about Legionnaires’ disease – he’s traveled, there’s a hot tub on the farm, though he doesn’t smoke so it’s less likely.
We’ve both seen very severe atypical pneumonia from legionella, but the test is negative. The respiratory viral panel is negative. The sputum culture is negative. The blood cultures are negative. Everything’s negative. But he’s very sick. It might be a viral infection run amok in his lungs, or a “walking pneumonia” that is unusually severe like mycoplasma, even though the blood test is negative, or maybe it’s an aspiration pneumonia somehow related to a bout of acid reflux the week before.
“What about the zebras?” I cite the aphorism drummed into us during training: “When you hear hoofbeats, think horses, not zebras.” Meaning that common things are common, and exotic diagnoses rare. But we’ve thought about all the horses, and still have no definitive diagnosis. And Ian’s condition is deteriorating. Could we be missing a rare diagnosis, something unusual – Q fever? Unlikely, his farm is not the kind with birthing cows in the barn. Brucellosis? I doubt that he eats unpasteurized cheese from Mexico. Psittacosis? No bird exposures and the lack of hepatitis and or an enlarged spleen argue against this. Hantavirus? He did have exposure to mice when cleaning his garage, but his respiratory failure isn’t fulminant enough, and the x ray findings would be unusual. Novel coronavirus? There have been a few cases in Italy, not just the Middle East, but the incubation period isn’t right for his last exposure.
What about those weird insect-borne diseases, anaplasmosis or human monocytic ehrlichiosis from ticks in New York, or murine typhus here in LA? He doesn’t have a rash, or some other findings we’d expect, but she’ll add another antibiotic just in case. I hang up, reassured. She’s good, she’s thorough, she’s compulsive, the word of choice to praise an ID doc.
Ian’s about the same. As sick as a person can be without needing a ventilator. He can’t keep going like this for much longer. He is lethargic. It could be because his carbon dioxide level is rising, a sign that he can’t keep up. The only positive: most of the time, when things go south, they do so quickly. I’m cautiously encouraged that he is still breathing on his own and has not had a fever for two days. Somehow he is not yet in severe distress, not gasping, still calm. Maybe the antibiotics are working.
Tessa’s phone is pinging every couple of seconds with texts, emails, voicemails. The scattered tribe wants to help, needs to know what’s going on. She is coordinating care, anticipating a prolonged recovery, looking into rescheduling plans, figuring out how to be there for Lucy’s year-end concerts and recitals, importing help from family, keeping up with different medical specialists, bringing in treats for the night shift, mastering the hospital hierarchy, staying on top of a million details. She is formidable. And scared.
Friday, June 7. X-ray a little better. Ian feels miserable and is complaining. We are thrilled. His head is pounding, he’s sore all over, he’s too weak to sit up. The flamboyant respiratory therapist that night tells him: you just think you need more oxygen, honey. You want to feel the air flow. And he’s right. They get him down to a simple mask.
Ian is unhappy with the position of a small fan blowing on him. Tessa and I take turns relocating it. Head of bed. Side of bed. End of bed. Different angles. Nothing feels right. But at least he’s talking a little. Voice weak. But talking. Privately, I think of talking as the Ian vital sign. He is not out of the woods. He still needs high amounts of oxygen. But I think he’s starting to get a bit better.
We might never get a diagnosis. All the tests are still negative. Maybe we’ll figure it out by measuring his antibody levels a month after he’s recovered. In a way it doesn’t matter: he’s surviving a life-threatening illness. He’s getting better. We’re going to see him through.
Saturday, June 8 – Monday, June 10. Over the next few days: dramatic, steady improvement. His eyes look brighter. There’s color in his face. Salem arrives, bearing cans of Ensure Plus, vetted for lactose intolerance. He charms the nurses, holds down the fort, runs out for soup, amuses and cajoles Ian into sitting up in a chair. Tessa and the physical therapist get him out of bed for a short, agonizing, but important walk.
I’m anticipating: can we wean down the oxygen some more, get him up into a chair for longer, get that PICC line out so it doesn’t get infected? There are details to attend to. Ian is exhausted to the very marrow of his bones. But he is through the worst.
Tuesday, June 11 – Thursday, June 13. Unbelievably, he and Salem have hacked the hospital TV to stream Apple TV movies, and he’s already planning an excellent hare-brained scheme for the Jartacular in three weeks.
I get a copy of the CT scan and take a look with a colleague I trust. We marvel at how fast Ian has recovered, faster than we’d expect. The CT contains thousands of 2D slices, millimeters apart, through his heart and lungs. Through vast powers of image crunching, the computer has made a 3D reconstruction of Ian’s heart and great vessels: the aorta, the pulmonary arteries.
I can rotate his heart in virtual space with the click of a mouse, almost hold it in my hand. Through this whole illness, Ian’s heart has pumped with the steady lub-dup of life, beat after beat, a vital metronome, reassuring and constant. We can see his heart from every angle, a miracle of science, but who can know the ineffable mysteries of love?
Friday, June 14. Ian leaves the hospital in time to see his daughter Lucy graduate from 2nd grade.
This is Tessa. Weighing in for the last time before Ian starts hosting his own party again. And what a fantastic party that will be!
Okay, this is for clarity:
Pneumonia. Severe Atypical Pneumonia.
On Sunday we went to the ER. Diagnosed. Went home. Unmanageable head pain. Admitted to the hospital later that night.
Monday, chest x-ray is worse. His doctor brings in an Infectious Disease specialist. Monday night, Ian’s fever climbs and climbs and climbs.
Tuesday, he looks good. Maybe we’ve seen the worst. Then suddenly, he can’t breathe. Very low pulse-oxygen readings. He’s moved to a “step down” unit with more intensive nursing. He’s on a breathing mask.
Wednesday, he’s maxing out the breathing apparatus. Pulse-ox not great but they’ll willing to see where this goes. Intubation or a bi-pap is the next step and everyone wants to avoid that if possible. No one is sure what kind of pneumonia it is. Infectious Disease doctor hedges her bets. There are nine antibiotics and anti-fungals hanging from his IV pole. He has one terrifying crash – his oxygen value plummets and we are suddenly surrounded by fast-moving medical professionals in crisis. Turns out the nursing assistant moved his tube to the “medical air” output rather than oxygen. We never see that assistant again.
Thursday, he is barely conscious. But with the non-rebreather mask he’s holding his own. Doctors are not crazy about how woozy he seems. A friend gently advises me… stable is good but he can’t keep up stable. He’s going to get tired. He needs to get better or he’s going to get worse. ICU is still a very real possibility. But, for some spooky wifey reason, I know he’s turning a corner, even if no one else can see it yet. And then for one magical hour on Thursday night, the clouds part and Ian, my Ian, emerges. Lucy gets to visit. Jokes are made. I am insanely (and probably prematurely) euphoric.
Friday sucks again. He still needs a lot of oxygen but the chest x-ray shows the tiniest improvement. And he’s had no fever for a couple of days. He’s still a really sick guy but he’s no longer a guy who’s going to die.
Lots of misery to follow. But not fear. No more fear.
Now he’s home. And every moment is joyous. Every meal a sacrament.
In a few weeks, we’ll start worrying about stupid stuff again. Some days we’ll be undermined and bedeviled, gripey and small. You just can’t ride sidecar with death all the time. It’s too cumbersome. But we will never be the same. We’ve lived inside something epic. A moment so clarifying that time stopped.
At the worst of it, I knew we were forcing life on Ian. The cliché didn’t hold. He wasn’t fighting for his life; we were.
I thought about what we would be doing in another time or in another culture. We might have been chanting or calling for priests, clearing the way for him to go, saying goodbye.
But we have different rituals. Vital signs, IV bags and oxygen, bedside vigils, stories from friends and the thrumming love from every corner of the globe. We were keeping him alive long enough for him to find his will to live.
And he did.
I said a week ago that Ian would miss all of Lucy’s year-end rituals – piano recital, choral concert, the completion of her school goal, a class poetry reading, her ballet performance and graduation. But I was wrong. Today, our head of school arranged a few chairs in the balcony, away from crowds and germs, perfectly placed for an easy exit. And Ian was there to hear his daughter’s name called.
I looked between the two of them. Lucy on stage, beaming up at us with a light stronger than the sun in her eyes. And Ian, weak but not broken, celebrating his lovely, steady child. They caught each other’s eyes and were instantly magnetized back to each other again, because of a million stars, a thousand friends, some excellent doctors, a few pushy nurses, a great school, and one very determined eight year old girl who needs her dad.
Hi, I’m Ian, or at least that’s the body I still inhabit. I lay here in my house tonight, the first time in almost two weeks. The person that walked out of here back then is not exactly the person who came back.
I still need to take two breaths for each sentence, and even walking across the room is difficult, so I’m going to save all the grisly details until Monday. And afterwards, I promise not to make this blog all about one subject, even if that one subject wanted to kill me.
But here’s one thing I need to tell all of you: every email, every text, every note, and every story contributed to me laying here tonight with no tubes sticking out of my body. I never thought such a thing possible, either that it would be so emotionally affecting, or that so many of you would care, but it is true. Even when I was read the list of Facebook “likes” or a wish from someone I have never met, it was real, it helped actually.
I am humbled beyond adjectives by all of you. I’m humbled by my wife’s writing on these pages, many entries I could only read fully days after they were posted. I’m humbled by the doctors who saved me, and the nurses who assuaged me. And a tiny bit of me is proud of my own body for beating back the visiting team, late in the third quarter.
It takes a village, to be sure, but this one had many villages, spread throughout the country like bronchioles, and while my lungs heal, I’m sending out a low hum of love to all of you everywhere.
I’ve had this impulse over the last few days to document. To tell a coherent story. To organize the mosaic of memory into a straight line. A definitive record of events.
But I’ve already forgotten. Like childbirth. And the 80s.
And the stuff I do remember, well, it’s sort of maudlin now. My husband slowly going under, gasping for breath, while his blood-oxygen plummets. Or following him into the ER behind a heavy door where Lucy is not permitted and, for the first of a thousands times, having to choose between my sick husband and my stunned daughter. Or, not so maudlin, the untold kindnesses that made it all bearable.
Tomorrow, Ian comes home to a clean house and a new/old life. If we do it right, this will have changed us. I don’t know how but I do know that we have the chance to find something strong and true. Even in the suckiest stuff. Even in this.
Because Lucy goes to a fantastic and accommodating school, Ian will be able to watch his daughter graduate from 2nd grade on Friday. And eventually, we’ll make our way back to New York for the summer. We will eat meals with friends and make plans with family. We will have stupid fights that end when Ian says something random about Richard Nixon’s teeth and I laugh until I get the hiccups. He will school me in Scrabble while I beat him in Boggle. And maybe we’ll get to live to a ripe old age until a double-decker bus crashes into us.
Don’t try to get anything accomplished during a shift change. If you’re not dying, wait until 8pm.
Wear practical shoes. You’ll be on your feet more than you think. But dress cute. You’re the representative for the family business. Doctors and nurses are your collaborators. Be someone with whom they want to work.
Drink water. Hospitals are very dry and it’s easy to forget the basic stuff.
Don’t feel like you have to answer every text or take every call. Your friends will give you a pass. And let people do stuff for you. Everyone sincerely wants to help.
Figure out who does what and ask the right person for the right thing. Nurses will empty bedpans but that’s really the purview of the CNAs. If you’re switching breathing apparatus, you want the respiratory therapist in the room.
Hospital rooms can get all dorm room in no time. Bring in photographs and drawings. Move the furniture so the flowers are in view. Tidy up. Organize.
Have great taste in people in the years leading up to your life-threatening illness, because then Salem Suber can come and stay round the clock while you try to keep your kid’s life semi-normal-ish while her father is attached to hoses and wires and patches and tubes.
Occasionally doctors can be brilliant but often nurses wise. Listen carefully. Everyone has a lot to offer.
Find a way to stay in touch with friends and family. Social media is pretty genius. Blogs are great. Mass emails work too. BUT make sure your family is hearing from you in a more personal way. They’re suffering deeply. Help them to feel closer.
The hospital is full of amazing resources. Physical therapists. Occupational therapist. Good old-fashioned therapists. Non-denominational chaplains. Pain specialists. Utilize them.
In lieu of flowers, ask for stories. Anecdote and yarn, gossip and obsession, rant and saga, every story inched him closer to life. But a couple of folks sent flowers anyway and, it turns out, flowers are pretty awesome too.
Before you walk in the door in the morning, smell the jasmine, admire the new magnolia blossom, notice the Western Bluebird by the parking meter. You need to bring in the hope and promise of life while someone is flirting with death.
For the love of God, make friends with someone in college who will one day be a brilliant infectious disease doctor. So, okay, I know it’s not possible for you ALL to know Caitlin Reed (which is a shame). Instead talk to your regular non-hospital doctor. Or a MD friend. You don’t want to undermine the hospital staff but you’re vulnerable. A version of Stockholm Syndrome can set in when you’re terrified. And even really smart, well-intentioned people make mistakes and miss things. You need to stay on top of it. Laurie Williams Gilmore suggests a notebook in which you write down everything that is said and every medication that is administered.
If your mom is helpful, ask her to come. Somehow moms can wedge their shoulder between you and the scary bits. At least a little bit.
Realize when you are asking the nurse to get a new medication from the on-call doctor at 3am, this will suck for him or her. There are politics in every hospital that are denser than the Canadian Boreal Forest. You have you have needs and they have a ticket of relationships. Ask for stuff but be thoughtful.
Bring in bagels for the nurses and doctors on your floor. It’s a way to express your gratitude and it doesn’t hurt the staff’s impression of you either.
Takes break when you can. Get out of the hospital. Take a walk. Avoid the hospital cafeteria. It’s not that the grub there is so terrible but there’s often really great food nearby. Doctors are foodies too.
Beware of polypharmacy. After Ian was less critically ill, he woke up to how truly bad he felt. His stomach was a mess. He had migraines. His body ached. And he still couldn’t breathe. Every specialist prescribed a different thing to help. Before long, he found himself in a Janis Joplin dissociative haze. When you can, keep it simple.
Take care of yourself. Try to sleep. Remember to eat. Take vitamins. Tell people how scared you are.
Finally, be a sorcerer. Conjure all the love that’s coming your way and bring that love with you. Touch his feet, rub his legs, kiss his forward, snuggle his shoulder. Remind him with your fingers there are more basketball games to play, songs to write, wacky scripts to dream up, and ridiculous projects to not-quite-finish. A hundred more recitals to sit through, seedlings to plant, and rooms full of friends with whom to crack wise. Dreary afternoons, glorious mornings and sexy gloamings.
Make a spell of love and never stop the incantation until he walks out that door, like a soldier returning from a private war, a ticker tape parade of friends and family cheering from the virtual sidelines and his daughter by his side.
Lucy insisted that Ian sleep with Squelch, her hapless quetzalcoatlus, with secret healing powers
Next up tomorrow… What the hell actually happened?
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