Dear Fund donors —
This is one of the most difficult things I’ve ever had to write. Pete is still with us, but has decided that he cannot fight this fight any longer. Here is a window into what I have witnessed behind the scenes: I have never seen someone battle in such a heroic way in my life. Starting last summer when we first discovered that there were possible cures available for the very deadly pancreatic cancer he has, Pete was informed that if he tolerated the Abraxane/GEM chemo protocol that he was on, and if his numbers continued to fall, he would be a good candidate for the trial at the end of the year. In an effort to continue to be in the trial he essentially poisoned himself, refusing to complain or change course, with a 100% dosage for over 6 months (apparently a very rare thing) to get himself to the finish line when the next trial was scheduled to start.
He was hospitalised more than once with septicaemia due to the toxic levels of chemo in his body. He compared it to a Russian-style nerve agent poisoning. His glorious brain went deeper and deeper into a state of confusion and he had trouble thinking straight. His body started falling apart and his usually exquisite sense of ultimate limb and body control started to abandon him, and he began to take frightening falls. But this reaction to the chemo was all in service of his making it to the trial so he continued on, even though the whole thing was devastating and brutal.
When the time for the trial came, when we launched this GoFundMe, we were threading a needle. He had gone off the chemo to give his broken body and mind a break. The original lab in Portugal that was going to do the trial did not have their new lab ready and so sent him to a new-to-our-team lab in Germany. Pete’s team in the UK waited quite a while to put him back on a chemo protocol. When they did put him back on, they chose a protocol that had been more tolerable for him during his first bout in 2021, when they were trying to get him operable (and did!). As this chemo pause and shift to a new team was taking place, his once very low cancer markers were rapidly, more rapidly than anyone thought would have happened, rising in his body.
He was recently put back on Folfirinox, his once well-tolerated chemo protocol, and he just could not spend another day on it. It was terrible for him. The lab in Germany did the initial evaluation of his tumour and blood at a cost of €16k from this GoFundMe fund (which cannot be refunded), and found things there that have given them some optimism, but the vaccine takes 10-12 weeks to produce, and without a chemo protocol keeping him alive, he more than likely doesn’t have those weeks left to wait.
He is being put in palliative care now. The world is losing one of the greatest musicians, rhythmic theorists and just lovely and decent human beings ever to exist. I am heartbroken. I have been privileged to have met him when I was 19. We were a romantic couple when we were kids, from the time I was 20 until I was 25. We were in 2 amazing bands together. And he has allowed me to go on this illness and end-of-life journey with him. He is truly a hero to me.
His wife Cheryl is a beautiful human being. They have been together for 20 years. They adore one another. She is the perfect partner for him. Calm and loving. Understanding and kind. Smart and practical. I’ve seen over the years how much he loves her. I am heartbroken for her too.
He’s been extremely nervous about this GoFundMe should we have needed to halt it for any reason. He’s been incredibly touched by everyone’s beautiful, kind and loving contributions to his health and well being. We have been discussing a strategy regarding the remaining money in the fund, and are going to work out an amortisation based upon everyone’s overall contribution to the fund, and will refund according to percentage. This is Pete and Cheryl’s wish for the monies.
That is all I can say at the moment. I am in a great deal of personal pain, but that is to be expected because it is perfectly in proportion to the amount of love I have felt for Pete in every role he has played in my life. If you haven’t taken a moment to look at the videos of him playing polyrhythmic drums and explaining what he’s playing as he’s playing it, please do that now. Then, if you’re so moved, you can send him a message about it while he’s still here. I know he’d appreciate that.
First thing after her breakfast, Snow White climbed into a small, half-filled paper and cardboard recycling box. It was barely wide or deep enough to contain her. Her little brother Mango instantly appeared, sliding into a position that was barely an inch from the box. As Snow White arranged the papers and cardboard beneath her, Mango watched with tremendous concentration.
Moments later, with a pretty little jump, Snow White abandoned the box, striding off in the direction of the living room in slow, deliberate, dignified steps.
Seizing his chance, Mango leaped into the box.
As soon as he had settled in—the work of an instant—he turned his head to gaze at Snow White and confirm that she was watching him.
But she was still slowly walking away, not paying him the slightest mind.
So, half a moment later, Mango too sprang out of the box, sauntering off meaningfully into the front hall.
Two swimming pools hold an almost holy place in my heart:
The indoor pool and gymnasium of the Chatham Center Hotel in Pittsburgh, where our family lived before our house was ready for occupancy. And where the gym manager Mr Kaufman, a mountain of lazily contented flesh who was never without his lighted cigar, unfailingly greeted my brother and me thusly: “Hello, boys. How’s your mother?” And where I taught my younger brother Peter to swim. We would hold our noses and hang upside down, our legs gripping the edge of the pool. When water went up our noses, we would shout “Angela!”, emulating some character on a TV show who had shouted that name, and cracking ourselves up over nothing, as only two close siblings can. After swimming, we would have spaghetti in the Howard Johnson’s that served as the hotel’s restaurant. That world is long gone.
The Big Pool at the Grand Floridian hotel in Disney World, several summers in a row, starting when my daughter Ava was six. The hotel is on the Magic Kingdom’s grounds. Entering the park an hour before general admission began, we’d hit our favorite attractions for an hour or two, while the temperature and humidity were still bearable. It’s a Small World and Pirates of the Caribbean were of course our favorites, but we also enjoyed the singing bears, and even the dreaded hall of presidents. Before lunchtime, our Magic Kingdom needs sated, we’d have returned to the hotel for a long day’s lounging in and around the pool. We made up imaginary and ridiculous Disney movies, describing the trailers to each other. (In “The Dog Who Shit Nickels,” when the suburban neighbor, pointing to a pile of coins, complains to dog owner Arnold Schwarzenegger, “Look what your dog did on my lawn!”, Arnold says, “Keep ze change.”) We splashed, we swam, we paddled. We floated on our backs, gazing at the palm trees and getting giddy over the ducks who roamed the grounds and used the pool as their toilet. My nostalgia for those moments is enormous. They will never come again. For we will never again travel to Florida.
Snow White pushed a stack of ceramic espresso dishes off of the kitchen counter this morning, to see how many of them would smash into a thousand tiny pieces. The answer was most of them.
I couldn’t find my broom, so I had to clean the scattered ceramic chips by stooping over a dustpan. Which made me wheeze and gasp for breath.
So the whole thing turned out great, because I’ll be able to tell my doctor, when I see him on Tuesday for my first annual physical in two years, that my COVID long-haul symptoms have not improved one bit. Which I might otherwise have lied to myself about.
As a child, I loved summer—no school! I could stay indoors all day and read! But summer camp, which I dreaded, ended my romance with that season. Even as an adult, no longer forced “for my own good” to do things I hate, the humid misery of August in New York is a hell I wouldn’t wish on anyone. Where were we? New York has two glorious seasons: Spring and Fall. They last only a few days each, it feels like, but that bitter brevity contributes to their sweetness. Spring has a slight edge over Fall in my heart, especially after the twelve months we’ve had.
“Why are you uncomfortable having a nonbinary cat?”
…my teenage daughter demanded as we sat together on the couch.
Daughter Ava wrote this for you.
“Ava, you need to understand that there’s something wrong with you, actually, quite a few things.” I listened closely, sitting in the large orange chair, making stick figures with my nails on the fabric. “You have this disease that’s very common with people your age who’ve gone through some of the things you have… it’s called autism, and together we can cure it with time.”
At age six, I knew what autism was, or at least I had a vague idea based on the movies I’d seen, and the bullying I’d observed given to my fellow child-outcasts. I didn’t really understand what the big deal about it was; I mean, my grandpas were both autistic and they were fine… kind of, along with my uncle, and some cousins—I didn’t see where Doctor A. was going with this speech.
“Ava, I have spoken to some of my colleagues, and we are going to give you the diagnosis of ‘unspecified mood disorder.’ No one can know that you’re autistic… there’s still hope for you.”
I panted, she continued:
“A lot of the kids out there in the waiting rooms outside aren’t gonna be able to overcome this, and I believe that you can. With the right treatment we can cure you of your autism… but you can’t tell anyone that you have it—not your mommy, or your daddy, or your friends!”
“Why?” I asked, feeling a ball of shame start to build at the bottom of my stomach.
“Because Ava, if they know, they’ll see you as different, and it will be harder for you to overcome, I promise there is hope for you Ava. There might not be hope for your dyslexia, or A.D.H.D., but I believe that if you stay with me, we will get you through this together.”
Ever since pre-k, I’d known I was different, but for a good couple of years, I didn’t have the shame.
Looking back now, I think it’s pretty obvious that I was not a neurotypical kid: at age four, I refused to leave the house without rubber gloves on my feet because I liked the smoothness on my soles. At age six, I couldn’t talk to kids my own age about anything besides the Wizard of Oz books, explaining my theories about their cultural symbolism, and how L. Frank Baum was an innovator and genius, not just because of his vivid imagination, but because he proclaimed trans rights (for the time), and pretty much invented the blueprint for the home landline—my teachers were not pleased.
What really brings light to my Asperger’s, though, is that my first crush, at age nine, was on Steve Buscemi’s character in Ghost World—I had never related more to a character (except for the protagonist of the same film, played by Jewish goddess, Thora Birch), and I liked seeing someone like me who only talked about his hyperfixations, and found it hard to talk to people. Sure, Terry Zwigoff didn’t mean to portray his character in a romantic light, but even to this day, I find Seymour and Steve Buscemi to be the epitome of male sex appeal.
I first started seeing Doctor A. when my parents separated, after I left a handprint of excrement on the walls of both of my apartments (thankfully, I have no recollection of creating that art). I had a hard time making friends or abiding by social norms, and when there were tiles on the floor, I would count every one of them. When I first moved into my (then) new apartment, I counted each log strip on the ground, and cried when the total wasn’t an even number, or perfectly aligned across the floor.
Doctor A. refused to give me medication for these issues, or for the depression and anxiety that I had at that early age, saying “It would impede [my] progress for these curable diseases.”
I am now sixteen years old, and I know autism isn’t a disease, it’s a neurological condition that people have from birth. I remind myself of that every day, but sometimes, facts can’t curb the shame.
When I started public school I was bullied very badly because I didn’t talk like a normal kid. I would only speak about things that I was interested in, couldn’t make regular eye contact (an issue I still have), and didn’t abide by any of the child-edikit that most kids learn by copying their peers. Kids beat me up in kindergarten because I was so “weird,” and my teachers chalked up my inability to pay attention in class and my unique behavior to my parents’ separation, which is honestly one of the least traumatic traumas of my childhood.
My parents eventually transferred me to another public school because I wasn’t accepted into my neighborhood school’s I.C.T. program, and my bullying was pretty unbearable.
When I transferred, for the first time in my life I was popular, but as my peers got to know me better, I quickly became isolated again. I eventually repeated the second grade because I hadn’t been able to learn anything in my previous school due to well… all that dogshit, of course; and being left back didn’t help me adjust socially at all. On top of the Asperger’s and being the new kid, I was now not simply the weird girl, I was also the dumb girl. Kids bullied me, calling me a ret*rd, and telling me to kill myself. This period of having no friends (apart from fourth grade when I actually had kind and qualified teachers) lasted all of elementary school and into seventh grade.
In fifth grade I forgot how to smile… when I looked at photos of myself, I freaked out because I was scared that I wasn’t smiling properly. Every day I would spend thirty minutes in front of a mirror practicing smiling, moving my mouth with my fingers, using my school protractor to measure the angles of my smile. I felt like a freak, and sometimes, when I look at photos of myself, or actors with great smiles, I forget how to smile once more. Every couple weeks I go to my bathroom mirror and practice smiling. Sometimes it’s for five minutes, sometimes two hours.
Socialization comes easily to other people. I don’t know how to make proper eye contact still: people always tell me I either never make eye contact, or stare at people so aggressively, it creeps them out. I also overshare to everyone about my political opinions and my sex life, because I still don’t understand social norms in America.
The other day I had an argument with my parents about not needing to wear pants when I go outside, underneath my hoody: “They won’t know what I’m wearing under this giant thing anyway… Why does it matter?” I still don’t know, and sometimes people think I’m faking not knowing these things to get attention. Truth is, I just don’t understand these unwritten social rules.
I don’t understand why I can’t talk about sex, why I should be ashamed of one of the most natural things in the world. I don’t understand common dress codes, I think they’re sexist, bullshit, and meaningless—and it’s not simply that I’m a feminist, it’s also that my Asperger’s impairs me from understanding these things that everyone else seems to have no trouble with.
Autism isn’t just social and mental, it is also physical, coming in the form of sensory processing disorders. If light is too bright, I can start crying; when people (including myself) chew too loudly, it feels like I’m being stabbed in the ear; and when I freak out or get really scared, my body shuts down, I can’t move, and I especially cannot say anything. I am ashamed because whenever strangers see these behaviors I am criticized. Even people who know and love me criticize me about these things. I feel like no one understands besides other people with these conditions.
That’s the thing, the shame is bullshit, the hatred I have over my Asperger’s is bullshit, wishing I could get rid of my autism is bullshit. The smartest and most talented people in the world are almost always autistic, and always atypical: Einstein, Stephen Hawking, Neil DeGrasse Tyson—but not just scientific geniuses, artists like David Byrne, Bob Dylan, Picasso, Max Ernst, Leonardo Da Vinci, and famous writers like Ernest Hemingway and Emily Dickinson.
You may have noticed that only one of the people on that list is a woman. That isn’t because men are more likely to be autistic, it’s that men are more likely to be diagnosed with autism, as women are taught to suppress their feelings and individuality.
And fuck it, the pros of my Asperger’s far outweigh the social cons, at least at this point in my life. My creativity and vivid imagination, my natural leadership, my ability to work alone and feel confident in my own choices, my unique empathy toward others and compassion for animals, the fact that when I become interested in something I’m practically a walking encyclopedia for that topic—my sense of humor, and the way that I always say what’s on my mind, a trait that women are told not to have, I have because of how my autism affects my executive functioning and my inability to abide by social norms.
I’m trying to stop freezing up when people ask me why I’m so strange, or if there is something wrong with me. I’m trying to not let people’s ableist comments get to my head, because I know deep down that in ten years these people won’t be able to produce an original idea to save their lives.
I have one thing to say at the end of this: fuck off, ableist assholes; fuck off, Doctor A.—I’m not ashamed of who I am; and fuck off, shame—you pit of piss at the bottom of my stomach, you don’t control me! The problem is society’s attitude towards people with neurological differences—not the differences, themselves. After all, in ten years, whatever cool ass shit I’ll be up to, the same kids who bullied me as a child are gonna wish they had my zesty Asperger’s funk.
Dear mom and dad, I know things are harder for me than the average teen, but I’m gonna be okay, because my brain is awesome, and my tits are huge. And to any other atypical person reading this, young or old, from mild A.D.H.D. to Rain Man levels of autistic spice, know that you have a powerful brain and are one of a kind, and these neurotypicals are really just jealous that we have all the hot geniuses and good music.
Tell your shame to go fuck itself.
For about a week, now, my bedroom floor has been torn up due to under-floor flooding created by a malfunctioning window air conditioning unit.
The A/C unit began leaking during the summer months when I lay in bed with COVID-19, and, in my sickness, I initially did not notice the leakage. When I did notice, I was too sick to do anything about it, other than turn off the air conditioner. Summer in New York did not make that sustainable.
Months passed, I began to recover, and repair people began to work in people’s homes again as New York flattened the curve and began carefully easing restrictions. Six weeks ago, I hired an authorized air conditioning repairman to make a house call and check the air conditioning units. (There are three window units in the apartment; one leaked and all three were radically underperforming.)
I thought the fancy repairman had stopped my bedroom unit from leaking, and apparently so did he. On that basis, I authorized a floor repairman to rip up my bedroom floor and replace all the warped floorboards. It took me three weeks to get the floor guy to come here.
He came, he pulled up some of the floorboards, and he immediately stopped working. It was impossible to continue the repairs, he explained, because the under-floor was badly flooded. He asked why I had waited to so long to get him in. I told him I’d been trying to get him to come for three weeks.
So, anyway, he ripped up more of the floor, then went away and told me to wait a few weeks for the under-floor to dry out.
A week passed. The water under the floorboards didn’t seem to be in any hurry to evaporate.
Then this morning I couldn’t open or close my bedroom door, because the floor area near the bedroom’s entranceway had suddenly begun to buckle. By pulling with all my might, I was able to open the door, and I will have to leave my bedroom open until my floor is fixed.
Why was the leak spreading, I wondered. And then I noticed that the air conditioning unit had begun leaking again. There was a fresh pool of water on the floor beneath the unit that hadn’t been there last night.
So I called upon Damir, a porter-slash-handyman who works in the building. He’s exceedingly courteous and warm-hearted, happy to take on odd jobs, and remarkably competent at diagnosing and repairing the many things that can go wrong in an apartment.
(Be thankful I’m only boring you with this tale of the flood, and not listing the many other home repairs that have become necessary since around the time the quarantine began.)
Damir elevatored up to my apartment and immediately found the twin causes of the bedroom air conditioner leak. First, there is filthy gunk in the guts of the unit that prevents the water from draining. Second, because of the way it was first installed, the unit is angled forward into the room instead of tipped slightly backward. As a result, all that icy, backed-up water leaks down into my apartment instead of spilling harmlessly out the window and into the alley behind the building.
Over the months I was sick, enough water had quietly leaked into the room for all that cold wetness to find a weakness in the flooring—a point of entry—where the water secretly settled like a doom in the darkness under the floor.
Damir brought up a hand truck to lug the A/C unit down to the building’s basement, where he will hose out the guts of the machine. Then he will reinstall the machine and build a shim under it to tip it backward so future leaks go out the window. It looks like he may get everything finished by tonight.
While Damir was making ready to cart the A/C unit away, he emptied my vacuum cleaner and vacuumed up the bedroom. Meanwhile, I moved all the stored items (boxes, drinks, rocking horse) out of the hall that leads to the bedrooms, so there would be room for Damir to cart the huge air conditioner away.
Damir and I were both wearing masks, of course, and in my post-COVID weakness, I found myself breathing heavily while I lugged the junk out of the hall.
Remember, several weeks ago, I paid several hundred dollars to an authorized air conditioner repairman who didn’t do any of the work Damir is doing and didn’t even notice the cause of the flooding or recognize that the flooding would continue. Damir, a building porter, would seem to be a better air conditioning repairman than the authorized air conditioning repairman was.
If the work Damir does today finally stops the A/C from leaking into the apartment, then the next step, after the under-floor dries out, will be for the floor guy to finish pulling up all the floorboards, replacing them with new ones, and buffing and enameling everything to turn those planks into a floor.
The hardwood floors are one of the most beautiful things about this apartment; I hope, some months from now, some semblance of what they used to be will be restored. Although at this point, I’d probably settle for ugly linoleum and the ability to shut and open my bedroom door.
Update: 60 minutes later…
Damir cleaned and reinstalled the bedroom A/C, mopped up a lot of the flood water on my bedroom floor, built a shim to tilt back the window unit after installing it, and checked 60 minutes later to be sure it wasn’t leaking. (It isn’t.)
He also cleaned the filters in the living room unit and Ava’s bedroom. I thought I had cleaned them but I did a poor job. Two words: cat hair. It gets stuck in all the units, causing them to malfunction. Basically, Snow White + my poor home upkeep skills + five months with COVID-19, not really paying attention to what was happening in my apartment, led to all this.
Thank goodness for Damir.
(I tipped him very well; that’s my job.)
People have kindly asked how I’m doing, so here’s the answer: I’m doing better. Most days, I’m doing a lot better. My doctor says it sounds like I’m making a good recovery. Making a good recovery, not recovered. Sounds like. I’m what they call a long-hauler.
I came down with a virus in late February, was diagnosed with COVID-19 on 20 March, and stayed bedridden at home until mid-June, when I began returning to work. My company has a remote work force and a non-exploitative attitude toward its employees, so I was able to work from home, in sleepwear, at my own pace.
Initially I could only work a few hours a day. As I kept working into July, I built up a tolerance to fatigue and discomfort, while also slowly shedding the disease’s more intense symptoms.
Generally, I’ve felt more and more like myself—except when I carry a few light packages, walk more than ten paces, or stoop to clean the floor. When I do those things for more than a few seconds, I have to stop and fight for each loud, wheezing breath. The discomfort lasts a minute or two, and then, as I rest, I feel “normal” again.
I’ve been viewing the lung stuff as post-COVID damage, which I hope someday will go away. But I might be wrong to think I’m past the disease. Two weeks ago, the lung stuff aside, I would have said I’d finally recovered from COVID-19, even if my doctor, that very week, would not say so.
But then last Monday, attending a virtual conference, I worked too many hours in a row—and for the rest of last week, I was symptomatic. Tuesday, Wednesday, and Thursday, I sat at my desk working as well as I could through bruising migraine headaches, nausea, and periods of fatigue that were hard to wave aside.
I took Friday off and slept. I slept Saturday. I slept Sunday. My migraine and nausea continued through all three days of rest. I took today off as well and felt better. But now I feel bleh again. Tomorrow, however I feel, I will return to work.
I have friends who’ve also been symptomatic for months, and I’ve swapped stories with dozens more. I also know folks who died from this disease, so I’m grateful to just feel lousy.
The chiming of my iPhone woke me from an afternoon of profound sleep marked by a long, unsettling dream involving basements. I’d taken to bed out of equal parts respect for my own exhaustion and the desire to escape a particularly pungent headache. Both are symptoms of my endless post-COVID-19 “recovery” period. It’s a virus that hangs on like an unrequited lover, and a disease that can leave you weak and debilitated for months—or longer. But we don’t think about “longer” yet, as I’ve only been sick for three and a half months.
Before the afternoon sick bed, I’d been working quite happily and even productively, until—wham!—a wall of symptoms smacked me in the head, and I had no choice but to listen and obey. On my way to bed, I just managed to feed my COVID-sick child, who is bound to her bed all day every day except for the early afternoon brunch and early evening dinner.
After the afternoon sleep—after the phone ripped me from the sinister architecture and unworthy companions of my dream, and while my heart was still pounding from a shocking sudden change of realities—I hurriedly tugged on gloves and a paper face mask, shoved my feet into still-tied shoes, threw open the door and hurried down the hall to the elevator bank, to meet a rolling hotel cart filled with newly delivered groceries that was on its way up to me.
(Bledar, the doorman on duty in my apartment building, had kindly accepted a Fresh Direct delivery on my behalf, stacked the bags on the building’s hotel cart, phoned me, waited 60 seconds ((to give me time to mask up and scramble down the hall)), and then rolled the cart into an elevator into which he’d punched my floor number. This is how we do it in this building.)
I rolled the packages to my door, packed them into the apartment, sent the cart downstairs again, unmasked, fed Snow White her afternoon meal, washed my hands, and put the groceries away. Then I had to sit down. What time is it? What day is it? When will I be well again? When will my child be well?
Photo by Malik Shibly on Unsplash
Corona Virus Week 6. Recovering, bit by bit. Still get winded carrying a light package more than a dozen steps. I can sit up in the morning, make breakfast, and listen to music for several hours. Am exhausted and useless by 1:00 PM—but it’s an improvement over the 24/7 exhaustion of the previous weeks. Tomorrow I will try working for a few hours. Fingers crossed.
My daughter and her mom have the virus, too, and they’re in the throes of it. Fortunately, they’re only miserable, not in danger. And I’m just recovered enough to help them, now, as they helped me when I was flat on my back, day after day, in sweaty sheets.
Other people I love are also sick with the virus, but that’s their story to tell (or not tell), not mine. If I could, I’d ask you to keep them in your thoughts.
This thing is no joke. If you’re sick, I pray that you recover. If well, please do everything you can to stay that way.
I’ve had Coronavirus for five weeks. My daughter has it, now, too. Her mom’s had it for weeks, but only recently recognized it for what it is. It sneaks up on you, disguised as a persistent headache, a seasonal allergy, some other unpleasant but harmless annoyance—until you can’t stand at the sink washing dishes for five minutes without immediately needing to lie down and catch your breath. Then you know.
It’s not just here in New York. A dear family member who lives far away (and who also has an underlying health condition) has come down with it. I think of them with hope, terror, denial, panic. We ping each other. You still there?
Some things are getting better.
For four weeks I could not get a grocery delivery slot from Fresh Direct, no matter what time of day or night I tried. This week I finally secured one. Four weeks ago I could not get Tylenol for love of money. This week I was finally able to order some—and it arrived today.
The grocery delivery slot means more workers are available, fewer are out sick. The arrival of the Tylenol (actually a generic Acetaminophen—you still can’t get branded Tylenol) suggests that supply chains and delivery chains may be doing a little better than they were during the first four weeks of the crisis. (By which I mean the first four weeks of March, even though the crisis was actually upon us in January—but we civilians didn’t know it.)
It’s a rotten disease.
This morning I woke at 5:00 AM. Ingested two espressos and a bowl of cereal and immediately went back to sleep. My daughter woke me at 11:00. She was sick but sort of hungry, so I got up and threw together a breakfast. We watched TV. I worked for an hour while she slept. Then I went back to sleep. That one hour of work took everything out of me.
It’s a rotten disease. You’re well enough not to need hospitalization, but too weak to do anything useful.
At 6:30 PM the kid woke me again. She was weak and exhausted and craving a sweet.
I got out of bed, threw on mask and gloves, and ventured out of my apartment for the first time in about a week. Picked up Oreos for the kid at the little deli across the street.
Then I visited my postal mailbox for the first time in over a week. It was flooded with junk. Nothing stops junk mail. Not signing “do not deliver” lists and opt-out lists (but of course junk mailers ignore those). And apparently not even Coronavirus can stem the junk-mail tide. The mechanisms of our dysfunction outlive us. Somewhere, surely, there’s a postal worker who contracted a fatal case of the virus while delivering junk mail to a dead woman.
Forgive me, I came hoping to spread cheer. Oh, well.
I’m grateful. Most people who die of this thing die right away. We lucky ones who survive just feel rotten for weeks. Rotten beats dead. The longer my kid feels sick, the safer I’ll feel about about her prognosis.
Rotten beats dead, but it’s still rotten. I wish those for whom this whole thing is an abstraction could see what I see and feel what I feel. The tragic unthinkable horror in the newspaper is the tip of this iceberg. Recovery is going to be long and hard and sad. The world we return to will be different.
Finishing Week 4 with Coronavirus, heading into Week 5. I’m home—haven’t needed to go to the hospital, thank God—and my fever petered out last week. So all that’s left are cold and cough symptoms and a totally debilitating complete lack of energy. Oh, and lower back pain: a bad cough threw one side of my back out, and lying in bed 18 hours a day somehow hasn’t unkinked it. Go figure.
I’m recovering. Slowly and unmeasurably but pretty definitely. Sitting at a desk to type these thoughts is something I can do today. Last week, not so much.
So lucky. My daughter is with me and, for the first time in over ten years, I have family in the building. We have enough food. Sure, it’s mostly lentils and pasta, but I know at least two delicious ways of serving those staples. And despite low energy, I still cook. It’s what I do now: sleep and cook.
The doctor who diagnosed me couldn’t test me.
There aren’t enough tests, but you read the papers, you know that. But my symptoms told the tale. I don’t know if he reported me as a case. So much data that could save lives isn’t being recorded because, well, you know why.
I reported myself to my company and our team (who are incredibly, brilliantly supportive), and to the MFA program where I teach one day a week, and, of course, to my wonderfully stalwart conference team. So many cases will not be diagnosed or reported. So many will spread the disease without knowing. So many will die and we (as a people) won’t be sure what took them.
I live in a hospital zone in Manhattan.
There have been morgue trucks on my block for weeks. I don’t look out that window much.
I’m lucky. I’m insured. I live in a safe neighborhood. And…
Not everybody thinks so, and it’s not a club I’m particularly proud to belong to anyway, but it’s still conferred massive privileges on me all my life. Some of which I recognized as a child. Some of which I’m still blind to. The point is, the people the virus is hurting the most are not white. Which is one reason the white people in charge have been slow to take it seriously.
But I get to stay home. I’ll get to work remotely, when I’m well enough to start working again. Privilege and dumb luck. Life and death.
I’m undeservedly fortunate and I’m thankful. To my colleagues, doing my work while I rest. To the medical professionals who live in this building and work in the hospitals around the corner. To the workers who toil in this building and haven’t the luxury to shelter in place. And to you who’ve been texting and emailing and DMing well wishes. Thank you. It helps.
Stay safe, stay strong, and be kind.
For the past two years, I’ve been publishing a daily work-and-life diary on Basecamp, sharing it with a few friends. This private writing work supplanted the daily public writing I used to do here. In an experiment, I’m publishing yesterday’s diary entry here today:
YESTERDAY, Ava and a few of her schoolmates participated in a giant, citywide Math Team competition. Hundreds of kids from public middle schools in Brooklyn, Queens, the Bronx, and Manhattan took part in the big, noisy event, which was held in The Armory in Washington Heights from 10:00 AM to 1:30 PM.
I woke at 6:30 to be ready to roll, but made the mistake of drinking my espresso and Diet Coke eye-openers in bed, where exhaustion from two weeks’ nonstop work and travel soon knocked me out again. At 9:30, Ava woke, burst into my room, and woke me by shouting, “Let’s go!”
As we live off First Avenue at the East River, we were able to quickly Uber up the beautiful FDR Drive to 177th Street, arriving on time despite our late, last-minute start. Inside the giant arena, Ava found her team, and I joined hundreds of parents, siblings, and well-wishers up in the stands.
In our last-minute rush, I’d forgotten my glasses, so I couldn’t really see much, but, after all, what was there to see? Hundreds of teens quietly solving math problems while a traditional sports announcer tried to keep the audience hyped by belting out the kind of ra-ra hype you’d hear at a ball game or wrestling event.
Each team had a poster representing their school, and of course Ava designed her school’s poster, a demented two-sided cartoon satire somewhere between R. Crumb, South Park, and tagging. It reminded me of the kind of stuff I used to draw in eighth grade to amuse my hoodlum friend Mike G_____.
(Needless to say, I was no mathlete, nor was Ava’s mom. I took photos and videos during the event and shared them with Carrie, so she could participate from Chicago; she and I joked about our misspent youths, and marveled at how our kid is turning out.)
After the competition, Ava and her pals and teacher joined me up top. Judging took a long time—hey, it was math!—so the event coordinators tried to amuse us by having Middle Schoolers breakdance. Ava and I left as the winners were being announced. (Her school didn’t win, but that’s fine.)
A leisurely ride down the FDR offered breathtaking views of parks and bridges in the Bronx and Queens, and eventually brought us home by 3:00. Where I made our first meal of the day: vegan black bean burritos for Ava; scrambled eggs, cottage cheese, and a sweet potato pancake for me. After our big late breakfast, we played Episode.
Then Ava went off to paint a Mother’s Day portrait of Carrie—and discovered that Maria, who cleans our apartment once a week, had thrown out her watercolor paintbrushes. (“Not her fault, she probably thought they were dirty,” said Ava.) No brushes, no painting—what to do?
Art supply stores in New York close at 6:00 PM on Saturday; we discovered that the brushes were missing at 5:30.
So we raced out of the house and made it to the nearest art store: DaVinci, on 2nd Avenue below 23rd Street. Sadly, the place is going out of business. Fortunately, they haven’t closed yet. We grabbed what we needed and came home.
Ava spent the rest of the night (until quite late) working on her Mom’s Mother’s Day portrait and chatting with friends via speakerphone. I listened to music and did what I could with the iPhone 7 photos I’d taken during the competition and the two long drives.
THE FILTHIEST men’s room in New York is on the 8th floor of 291 Broadway. You would think the men’s room at Penn Station or the bus terminal would beat any other for filth and stench but you’d be wrong. 291 Broadway’s is worse. There are five years of crushed insects on the walls. They never get scraped or cleaned away. There is stranger’s urine in every porcelain receptacle in the place. Weeks of it. It never gets flushed. You can try flushing it, sure, but it never goes down. Men urinate fresh streams atop gallons of other men’s stale urine in perpetuity ad infinitum. It sickens the soul. Chills the blood. Is enough to make the pope doubt God’s existence.
This bathroom is not in a slum. It is not in a poor third world favela. This bathroom is in a fancy NYC skyscraper, a stone’s throw from the historic Woolworth Building. I visit this bathroom once a week from the waiting room of a fancy office where, this being New York, I drop $250 per session. This is a court appointed specialist so I can’t choose another—say, one in a building with a clean and functioning restroom. This specialist deals with serious human misery. The kind that comes when families are torn apart. She does a good job of helping people. I doubt she has visited the men’s room here. If she had been to it, even once, even just for a moment, I doubt she could find the will to carry on in her good works. There are many filthy places in New York. Places that breed addiction, crime, and despair. Places no sane person would willingly go. Cesspools of the human spirit. Places where hope dies and light is extinguished. They are all better than the men’s room on the eighth floor at 291 Broadway.