Sorrow, Bright-Eyed Now, After Meeting Her Death

for Belma González

BIPAPSTWhen Gretchen landed in the hospital again with pneumonia in 1993 she learned she had something called sleep apnea, plus chronic respiratory failure and minor heart damage that she, only 27, could expect to heal with proper treatment. At the first Wednesday morning meeting following her return to work a few weeks later, the West-Hesperidan women’s free clinic staff apologized to her. Even with her cane, Gretchen couldn’t stand long enough for fourteen women to express remorse so everyone stayed seated instead of making a circle around her. The gist was that while they knew Gretchen had muscular dystrophy, they still hadn’t thought of her “like that.” They said they were sorry for not respecting that Gretchen had a disability and for assuming that she had been lazy and napping at her desk when she was, in fact, semi-conscious and unconscious, depending on the time of day.

Gretchen, who had made the same mistakes and for a much longer period of time than they, said as much to Helena when they met later to go over how Gretchen’s job as Administrative Manager should be adjusted. Helena said getting her a part-time assistant was the thing to do but it would have to wait until the next fiscal year. Gretchen didn’t care. She had stopped pretending that she could do anything she set her mind to. When Helena looked at the younger woman and asked if she was really doing okay, Gretchen said, “Absolutely, nearly dying was definitely worth it,” and laughed before Helena’s expression made her say more soberly that she just couldn’t describe what had happened. Where to begin? Helena looked at her and the stuffy little health education room with the patchwork-cushioned benches filled with the sound of them breathing long and deeply together.


This was what happened. You woke up in the ICU. Spring, late April. You were in the University of California, San Francisco Medical Center, blocks from your flat in Cole Valley. You’re stretching and there’s this plastic thing over your nose with a hose attached to it. You can barely see around it. The whole contraption is snugly on your face. There’s a whooshing sound synching with the puffs of air going into your nose, and you breathe out in little snorts, and they are all being push- pulled by something outside you. The force turns out to be coming from a box on a cart to your left. The hose runs from your face to where it is attached. You’re very toasty and relaxed and sprawled in what is actually a very sick-bed but instead of being all warmed-over, death-wise, you’re St. Tropez sunny, hit the casinos later, what. You touch a solid crust of drool down one side of your face and neck. It just doesn’t matter because lying there is so blissfully comfortable, not drugged comfortable, which is just fine if memory serves, but this isn’t it, you’re quite alert. This is like walking down a minor incline after slogging up a major incline for a very long time. You are in a pale yellow room with a glass-windowed wall with a sliding door. Weak sun is coming from somewhere. Nurses walk by outside the door. You went to – sleep? – last night in a different room so you have been moved. Impossible to tell what time it is but it’s probably early morning. The drool is for the most part dried but a new dribble is eking out; you can feel a chill breeze across the waters on your neck. You can move easily enough. Rearranging your arms and legs brings a little shock of surprise, a familiar room that still exists after a long trip. You dab at your neck with the absurdly cuddlesome cotton blanket. There are two draped across the sheet. It’s enough to lie there. The rhythm of the machine’s pulse is the ocean inside, a tidal swell as the breath is huffed in and then an expansive caress inside, and the wave hugs the shore as the breath expels seemingly on its own — and that is some relief, the old body of yours is making it clear in no uncertain terms. You feel fresh as a daisy, mentally speaking. What you will remember of this morning: the feeling of a hand in your chest, less the constriction of the cardiac patient than a warm reassurance; the lung-tickle of a pneumonia; ease, as you are breathing without strain, and at full volume, for the first time in who knows how long; the sense of seeing in color after seeing in monochrome; the shitty coffee in the brown plastic mug and the cherry Jello; that you can’t get enough of either. The coffee really does taste good, even if you know it is shitty, and the second bowl of Jello is as good as the first. Fruity.

The explanation of where you are – ICU on the morning following your admission to the hospital for pneumonia the day before – comes from Pamela, your own personal ICU nurse for the duration of a twelve-hour shift that started an hour before you woke up. She is that indeterminate age of attractive, healthy women who wear a substantial amount of make-up. Dark hair and sympathetic eyes, bearer of coffee and Jello. She can laugh and write fast on your chart at the same time. She removes the thing on your face by ripping a Velcro strap under your right ear. It slips off your head and you see it, a skullcap of white fabric with four Velcro straps, just the one dangling, the cap attached to an oversized nose-guard and plastic hose. You can talk more easily now.

She calls it a Bi-Pap and says you seem to have sleep apnea and that you were brought down late last night because you weren’t breathing, and when the oxygen they gave you made you worse, they realized eventually that the real problem was that you weren’t expelling the carbon dioxide, and this was bad. Especially since they hadn’t figured the problem out before they upped your oxygen twice. You have no memory of being brought to the ICU. There were three, Pamela says. Crises. And the third was particularly frustrating for them. You were quite the mystery before they hit on the idea of sucking the CO² back out of you. And you cussed out the attending who was trying to get the Bi-Pap mask on you. You say something contrite but it’s like apologizing for someone else. She slips a finger meter on you to check your oxygen level. Eighty-eight. She says that’s just dandy compared to where you were but it has to be watched. When the antibiotics kick in, the level should rise. You have a nasty pneumonia or bronchitis, they’re not sure which. She loops the tubing of a nasal canula over your ears and positions it in your nostrils. Safe side. After the Bi-Pap’s gush of air, the canula’s assistance is like two dribbles.

A nasal canula is the standard prop on film and tv for denoting serious illness. You’ve often seen them on the faces of strapping women and men playing characters near death. On soap operas, the women actors wear an astonishing amount of make-up under their canulas. You doubt anyone will ever be seen on screen who looks as bad as you know you look now.

You start to remember the night before: the regular hospital room where they had put you with your pneumonia, all tucked in with a dainty nasal canula that felt like twin boogers crossed with an air-vent, blowing tiny twin streams of pure O² up your nostrils, maybe five pounds pressure or some such. You were still with it and you were watching early evening tv after your boyfriend left (“Go, go, I don’t mind hospitals, they’re hotels with extra bacteria.”), praising god you have a room to yourself. Television distracts you from the twin airstreams blowing into your nose.

Lying on your back, you are breathing but unaware that even as the air goes in, in, in, less and less is coming out, out, out. Death doesn’t have a very loud knock. Walks in socks. Quiet, patient, death takes the remote from your slackening hand and changes the channel. You go from watching Seinfeld credits to a different kind of inventory.

Now, how in the hell could trusty O² hurt you? You were admitted that afternoon from the outpatient clinic when the resident found you had blood gases in the upper sixties. Pass out time. O² is what you need. This is not incorrect. It is, however, incomplete. A little knowledge. The CO² is building up in your system and that is called CO² narcosis, and that slow, peaceful process is death smoothing the hair back from your brow and saying, Let me tell you a story about everything there is while we’re waiting.

You are not being strangled or having a pillow put over your face or struggling in any way. You’re just crapping out by degrees, not very dramatic ones. It doesn’t set off any alarms, apparently.

You are watching the television screen. There is no story. There are words. The common names of everything, everything there is in the world.

Sedately flowing upward on the screen, words in simple black type on a white field, your two eyes watching the words go by, next to your friend the end, and this is going to go on for a while, the weight of the time involved to read the list of everything that exists in the world is one big-ass amount of time, almost unacceptably great, as in it cannot be accepted for reasons of simple dimension. The list scrolls without any Lucy and Ethel speed-up. This list, the inventory of the world’s contents, reveals itself as all there is, and – that’s it, folks, it’s Monday morning seven days on this list flowing decorously and ever upward, black type ascending, a jarring step into what appears to be a deep puddle but that turns out to be no more than a sliver-thick liquid smear on the walkway, what were you thinking there would be more to it than this; it says its name from behind you, despair, invisible. You see your gut cradles a factory’s crankshaft and you’ve been trying to turn that crankshaft sucker for a while and it’s not budging. You keep straining and pushing and you have a clear sense of futility, there is no hope of making that sucker move an inch but your legs are braced and your weight is thrown, there is no, no, no hope no hope at all; it moves, it was all your effort and you had nothing to do with it, this power and its force. It wasn’t you moving it but it was, and it’s Saturday morning where it had been Monday. The list is still scrolling and each word — cough, candle, quasar, and on and on — is a wrapping around a present that could be anything. They balloon sails, those markings from the sailors of Phoenicia. This is all there is, the words scrolling; it was not enough and then it was.

This is distilled into a euphoric whisper you share with the closest of the people ringed around your bed, a shiny-haired resident. She looks relieved as you continue waking up. The first time that night.


The time finally came to hire Gretchen’s assistant over a year later. Penny was as elfin in person as in her cover letter, bubbly and bright and thrilled to be applying for such an AMAZING administrative assistant position because the HORRIBLE job market was making her first real job search HELL. Gretchen was wary though amused by the all-caps writing. In her interview, Penny flooded with such sympathy when Gretchen waved off the sore spot on her nose caused by the Bi-Pap as “the mark of the mask,” that Gretchen wondered if she was, once again, suffering much more than she realized. But Penny proved herself a great choice in the first months. She organized the piles on Gretchen’s desk, filed for her, and ran the clinic’s laundry to the wash-and-fold through the winter rain. After three months, Gretchen trusted her with the deposit for the bank, much of it cash donations in small bills. Gretchen’s all-caps applicant who shook with excitement throughout her first week in their Haight Street clinic was just fine.


Clear-minded in the ICU if still exhausted, her vital fluids cared for and calibrated, Gretchen’s oxygen-fed memory dripped the past year into her thoughts. She had been conscious throughout the time of course but moments had pattered on dried and airless soil and run off, away. Absorbed, they bloomed now, ludicrous blooms of memories. She had woken more than once at night panicked and airless, bolting up to sit on the edge of her bed, dragging air inside the way she pulled something too heavy for her to move, a dull aching hole opening in her middle. And then back to sleep, waking at the alarm to the gunshot headache in her temples that subsided through the morning. She had suffered, apparently. Asphyxiation in the dark, she decided, was so much worse, not just because of some atavistic fear of the Great Out There but because in the light, even in utter physical panic, she still had evidence of what remains and that included the auto- feed gift of sensation, with the King Sensation for her being sight, the WATS line to her insta-heart, I saw you and I knew, and in the arc of dying, anything my eye falls on is the beloved. Crucifix, spouse, crumpled tissue, it’s on the inventory of the world she was leaving, and if the lights were on, she could be on the train pressed against the window watching the platform recede, precious overhang I never appreciated you, how can I leave you, newspaper bin, cigarette butt, mother, smaller than I was when I got on the train a minute ago, holding your pocketbook against your side as if I am there and six again. Oh, that is some grief. This would crack her right open, this regret, remorse, all the re- words, re-ally. She slept a great deal in the ICU.


Penny arrived one day trembling and teary and Gretchen hustled them off to the clinic’s little back porch and the little purple table for a little talk.

“It’s nothing, she said, and Gretchen said, “No, it’s something.” She shrugged. Gretchen leaned toward her, face averted, giving the one ear for whatever Penny would choose to put in it.

Penny spoke with a surprising bitterness, “You don’t understand. I’m not like you.”

“Of course you’re not,” Gretchen said. “You’re you.”

“You’re…fine.” Penny whispered. Gretchen, hearing a little sister, said, “Tell me, Penny, tell me what’s so wrong.” She asked if it had anything to do with…whatever the housemate’s name was, the one who flirted all the time.

Sheepishly, Penny nodded and the odd unpleasant tension was broken between them and Gretchen, hearing the story, said she’d been through the very same business; Penny would be fine, as Gretchen had been fine after a good chunk of time and it was such a hard thing but there was always some problem with housemates. Best not to sleep with them. Now it was probably time to get back to work.

Penny said, “Thank you thank you thank you thank you!” She was vibrating with gratitude. Gretchen, caught off guard, assured her it was nothing and that she would get through it. If she, Gretchen, had, anyone could.

“No,” Penny insisted, “I’m not like you at all.”

Gretchen, who had just hauled herself into a standing position, leaned against the table. “Why do you keep saying that? I mean, I’ve never thought anybody was ‘like me,’ but you are like me. You’re smart, you get excited about things you want, you’re probably nicer than I am.”


“Well, what else is there?”

Penny shrugged hugely. “You deal with stuff.”

“That’s my job.”

“No, I mean — ” She gestured to what was clearly Gretchen’s physical situation.

“Well, not much choice about that.”

“I’m not like you.” Penny was downcast again. “I don’t know how to manage stuff.”

“Penny, look at all the experience of you managing things.” Gretchen’s expression was pained. “You’re doing well.”

Penny shrugged. “And then I always mess it up.”


Treat a person badly and there’s a good chance their reaction will be to turn around and treat someone else the same way. Not so with the body. Deprive it of oxygen and overload it with CO² for at least fifteen years, then stop all that and see what happens. It immediately starts to feel gooood. It sets about healing heart tissue and such, no hard feelings, no continuing the cycle of abuse, thank you very much. It’s unfair that the PR’s been so bad for the body for so long. It’s a model citizen.

Sunday evening, four days after the Inventory Incident, while Gretchen was still in the ICU, she spent a few minutes alone with her medical chart because she was fed up with residents and medical-puzzle freaks asking her the same medical history questions. It was tiring. She kept asking, Have you read the chart? She was winded by the exertion it took but she managed to grab her chart hanging at the foot of the bed. Sitting up made her dizzy but it felt good. Easier to breathe sitting up straight. Let’s see what they’re not reading about her in this bone shop.

It was a miracle she hadn’t had a leg amputated and been given a Thorazine enema, the writing was so bad. She found a nearly blank sheet with notes dated from inventory night. The writing was in thick black marker, entered by the shiny-haired resident who’d welcomed her back. Well now. Gretchen had whispered as she leaned down, “Life is good. Write it down. Life is good.” Simple declarative sentences. “Patient uttered gibberish.”

Well that was a bit strong. So what if they knew the chemical composition of euphoria? It was still euphoria. It could have a basis in physical reality. But maybe it was her thirty-fifth hour of a thirty-six hour shift, not a good time for hearing big truths. She closed the chart and slid it toward the end of the bed and lay back down on the pillows, being careful not to land on any of the many lines that were connecting her to the surrounding machinery.

Doctors. What kind of person signed up for that kind of learning process? It weeded out so many people who could empathize with a weak, physically damaged person, and thus had a leg up diagnostically. When it came to a doctor understanding a disability, it was like a cop’s understanding of human nature. A nail tends to see a lot of hammers.

Psychologists had to go through analysis as part of their training. Why not? What, a big toe for the aspiring surgeon? Induced disk compression for the chronic pain specialist? Nothing tragic, just…mild discomfort. A partial for the dentist. Hormone injections for the ob-gyn; don’t forget the couples counseling with this one. Those who have had childhoods marred by disease, preferably chronic ones they were trying like the devil to work around right now, this was their lucky day: You’ve had your mild discomfort, just don’t ever be dumb enough to forget your first and best medical professor. Ladies, gentlemen, say hello to Disease, who will not just be providing you with a fascinating career but will also scare the shit out of you, if not personally, which it is almost certain Disease will, but also professionally, by making you feel like a big, fat failure when you just can’t control Disease, much less get Disease to lay off permanently, because if there’s one thing Disease is not, it’s optional. Disease is definite. Disease has this vertical-integration deal going with Degeneration and Death, and you, Doctor, though a D-word your own self, are the poor schmuck who moves the furniture around the offices of 3-D Enterprises, An All-Natural Company, Inc., “3-D’s Always With You.” Start bragging about how they’re going to make you a partner and guarantee it, an irregularly shaped mole will appear on your body within two weeks. What’s the difference between a doctor and God? God doesn’t think he’s a doctor.

Such were her thoughts as the first week ended. Her boyfriend’s Sunday visit seemed to last all of a minute and she was realizing the Bi-Pap machine was with her forever. No more last-minute sleepovers and it made a hell of a noise. And the whole time it had been discussed, fitted, not one single person has responded to – much less offered a comment on – the most incredibly obvious problem with the thing: She wasn’t sure even she’d fuck her if she saw herself in that gizmo. There was an echoing slide-rule silence in the room every time she said this in more polite terms to the enthusiastic respiratory therapists and residents. And then: ”Don’t worry, your parents can help you put it on.” Her parents were great but they were 3,000 miles away. After a week of this, she felt like she had no reflection.

When her boyfriend called that evening, she was so low she accepted his offer to set up a healing for her that night from the student meditation class he was in. A bargain thing.

The next night, after dinner, she was lying there still feeling crummy but nursing a cup of coffee and watching Seinfeld, and it happened. She started to feel like the ICU was quite a swell place and laying around on a work-night sipping coffee and laughing at tv wasn’t so bad. She was back, baby. She knew one hundred percent who she was, and no matter what happened, she would always be herself. She had completely forgotten about the healing until her boyfriend asked gingerly if it had helped and she said, “How about that? Me of little faith.”


Two weeks after Gretchen congratulated her for successfully completing her probation, Penny didn’t show up for work on Monday afternoon. Gretchen was more concerned than critical when Penny walked into the crowded back office two days later with coffee and a limp excuse about needing to get away sometimes. Her gentle probing led to nothing but Penny’s promise to call Gretchen if she couldn’t come to work. Gretchen took the plunge of asking her to Sunday brunch and a Reality Bites matinee at the Kabuki. When Penny didn’t arrive at the restaurant, Gretchen moved on to the movie theater where she bought her ticket and settled in. Penny plopped down next to her as the credits rolled, offering Junior Mints apologetically. She’d come in late and couldn’t find her in the dark.

Out on the sidewalk, Gretchen suggested coffee but Penny said she had to go. She hugged Gretchen hard and said thank you three times and walked off in her corduroy jacket. It was a typical San Francisco day, overcast, damp, and chilly but ugly in a new and frightening way.

She and Penny had parted in Japantown and Gretchen did something she seldom did. She set off wandering on foot with her cane, ending up several blocks away at the church waggishly called “Our Lady of the Spin Cycle” because of it’s resemblance to a washing machine’s agitator. A service looked to be underway and she drifted around outside on the vast concrete terrace that overlooked the city’s south side. The vista ought to have been stirring but it was ghastly, a lunar landscape in cold, harsh light a million miles from human warmth. She could just make out people inside the church through the dark brown glass. She wanted to cry, the desolation was so strong.

She caught the 43 bus and felt better once she clambered aboard, surmounting the ridiculous first step only after two hands gave her an underarm boost from behind with a, “There you go, little sister,” and she tumbled into a seat at the front, catching the eye of her benefactor to whom she nodded thanks, then rested, winded and riding the waves back to home where the late afternoon fog was flowing oceanically, silently over the pine trees on Tank Hill.


There is a difference between not being able to breathe in a room with light and not being able to breathe in the dark. Not being able to breathe in the dark is asphyxiation squared, an order of magnitude worse than high-noon asphyxiation. Gretchen couldn’t watch those showboat magicians do their buried-in-a- coffin-for-forty-days televised specials anymore, or crime dramas where they referenced being buried alive. Those made her sit forward in her chair and take big breaths to show her self the old-fashioned way that we’re breathing, we’re breathing.


When Penny didn’t come to work the next day, Gretchen was annoyed. There was no answer on her group house’s phone so she glared at the tidiness of Penny’s folding-table desk and set about matching purchase orders to packing slips and invoices, tuning out the racket of platform-soled outreach workers pounding up the front stairs, clinicians yakking about the mystery of missing speculums, and the volunteer coordinator calling health educator applicants for interviews. When she mentioned it to the outreach manager with whom she shared a desk, Therese shook her head. “That girl. She was just telling me how she had really gotten her life organized. I was about to ask her if she would please do something about mine.”

On Tuesday afternoon, Gretchen called again and someone picked up. Ten minutes later, she put the phone down and went to find Helena. Penny’s housemate had told her Penny had killed herself in her bedroom the day before when no one was home. She had used vodka, tranquillizers, and a plastic bag. Her room was in perfect order; they had found her lying on her bed with a Hemlock Society pamphlet next to her; its instructions in perfectly ordinary words: tranquillizers, plastic bag. They, her housemates, knew she had been upset about one of them, and how their relationship hadn’t worked out. They hadn’t known she’d stopped taking the medications they found lined up, a short row of unwilling sacrifices, on her dresser. Prescribed, her note read, so she could pretend to be the kind of person who was fine. Who didn’t need medication. Who wasn’t like that. They didn’t know she’d stopped taking them some weeks before because they didn’t know she took them in the first place.


Asleep under the Bi-Pap’s mask, Gretchen dreamed the following night that she met Penny in the narrow hallway of Gretchen’s therapist’s office. They bumped into one another and Penny caught Gretchen’s arm as she stumbled and Gretchen grabbed her, taken aback at her bony solidity. Penny was no ghost. She was smiling broadly, shaking her pixie head at Gretchen’s concern and, truly, she had a happy face. Gretchen said, “I just didn’t expect to see you…” and Penny shrugged and Gretchen noticed Penny’s shirt. It wasn’t one she recognized but it was Penny-like, a long-sleeved jersey with tiny stripes, a shirt a young child – or Gretchen herself – might wear. But it wasn’t only the shirt that caught her eye. There was a snippet of bright blue pinned near Penny’s shoulder. She saw it was a fragment of what looked like a theater ticket, torn across the top and bearing only an A in bold black type. The ticket was held in place with a tiny gold safety pin. Penny saw her looking and said, “See? Nothing to worry about.” Gretchen suddenly needed to have Penny’s corporeal presence be appreciated by someone else and she turned to look for her therapist, who would get quite a kick out of it. When she looked back, Penny was gone but wearing the ticket that denoted her, Gretchen surmised, as needing something like pre-boarding assistance.


The city approved the clinic’s request to dedicate a tree in Penny’s name in the AIDS Memorial Grove, the difference in diagnosis outweighed by loss. After much discussion, they all settled on a flowering quince. That Wednesday morning they made the short walk from the clinic to cross Stanyan into Golden Gate Park, Gretchen holding Helena’s arm and the two of them falling farther and farther behind until they reached the planting site, already encircled by the unusually quiet staff. “Where to begin,” Helena said. But they kept to the plan, each saying something in turn while the sun and clouds traded turns above them. After they’d gone round and sat in silence for several minutes, they rose up, some nimbly, some painfully, and started back for the first appointments. Gretchen was helped to her feet by Helena and Therese, and decided to continue hanging onto Helena. Therese handed Gretchen her cane, sighed, and sighed again, and left. Helena followed with Gretchen, slower even than usual on the grass. The clouds had won out and it was chilly in the grove, summer or no. The fog rolls through the grove twice a day, day after day, the sun shines hot enough to dry the drops on the leaves and the grass-stems, and the mist grows into raindrops that grow into a little network of rivulets, some spreading outward to storm drains, to reservoirs, to underground creeks, and finally to the bay, the ocean; Gretchen, Helena, Therese, and the rest, starting only blocks away from the grove, continue spreading outward, too, and away, an oceanic and ceaseless flow of words, meanings, and memories out from those within their circle while they lived.


Their flowering quince is a delicate tree and lives alone as all trees do or seem to. It is time that brings a tree to the others. It happens underneath and overhead, water and light wake leaves again and again to color and begin the bending, the bowing, to the others still at a distance but coming closer as the years pass; deeper roots find common water and the branches, of whatever sort, pass the time with their leaves breathing, gossiping, nudging, colliding, sometimes crowding those within their reach — the smaller, the weaker, which every tree has been and will be again — but just as often standing shelter, giving refuge because it needs refuge before the inevitable fall to the dry, the deluge, the storm.


5 thoughts on “Sorrow, Bright-Eyed Now, After Meeting Her Death

  1. “Lying on your back, you are breathing but unaware that even as the air goes in, in, in, less and less is coming out, out, out. Death doesn’t have a very loud knock. Walks in socks. Quiet, patient, death takes the remote from your slackening hand and changes the channel. You go from watching Seinfeld credits to a different kind of inventory.”

    This is profound. Great writing, as usual.


  2. Pingback: Before I Resist and Persist, I Must Exist: Bioethical Choice, Living “Like That,” and Working the Early Shift of Cleaning Up Ableist Narratives | Tales From the Crip

  3. Pingback: #IAmaPreexistingCondition Says NO to #AHCA and YES to Protecting People Not Profits | Tales From the Crip

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