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  • Writer's picturePeggy

What It Is To Want for a Vent

Updated: Nov 29, 2023

In high school, on a trip to Europe with my radio-famous Dad as tour guide, Dad and I spent one day alone, after my sister and stepmom went on a day trip to Venice. My Dad — who’d grown distant and awkward now that his two girls were teenagers — wandered the streets of a beautiful, amber-hued spa town outside of Florence called Montecatini, where elderly Italians sought healing through communion on every corner, nobody had heard of social distancing, and Dad commented we were younger than everyone else in town by fifty years. He bought me pistachio gelato, we looked at local art and bantered with our similar sense of humor, but we never got in the famous thermal baths because at the time, it would have been way too embarrassing to do that with my shared-custody Dad who, like me, was really good at appearing to be an extrovert when he didn’t always know how to connect. Still, that day with my Dad was one of the most intimate and one of my very favorites.

In just a handful of years, I would become suddenly, horrifically disabled by myalgic encephalomyelitis (or ME/CFS), a disease that notoriously renders the sickest 25 percent homebound and often bedbound for years or decades, as it has for me. In my case, I was able to do things like occasionally travel home to Illinois and pursue my writing for the first six years — as long as I worked mostly from bed or by briefly sitting up — but for over two decades, I’ve been living the way many people are living around the world now, trapped at home, unable to go anywhere except on very rare occasions. I know this socially-distanced deprivation like the back of my hand, the hand I have sometimes stared at on a flat comforter, watching even its tiny muscles atrophy. Isolation is crushing, and hard, and I wouldn’t wish this on anyone. My family has for years pretended that my disabilities, though, are somehow all about their suffering, or as my Dad wrote when I begged him for money for a ventilator in late April of 2009 as the last (far more understated) pandemic of novel H1N1 hit, “I will not engage more in the futile and thankless exercise of trying to quantify the physical, emotional and financial price I have paid for the misfortune that has unfairly struck you.”

I do know what it is to want for a ventilator, and to have your life selected out as not being worth it, as many vulnerable and elderly Italians (and those in China, Iran, and some other heavily-stricken places) are forced to reckon with, with particularly horrific stories coming out of Italy that make my heart break, as does the spirit of the Italian people singing from windows to break their imposed solitude. I can hardly bear to think about what they’re going through, what those of us in the US are facing now too.

My own Dad — the one who witnessed and greeted those elderly Italians who seemed to not have a care in the world — has been largely ghosting me for over a decade now, since he walked out on me when I was dying and refused to get me ongoing care when it was life or death for me to have it, then openly implied that I didn’t deserve funds for a ventilator beyond one month, when I was gasping and heaving and retching for every breath in respiratory failure and septic shock after a hospital had just ignored critical signs due to my diagnoses, and had sent me home to die. That same hospital just announced this morning that it has two confirmed cases of the novel coronavirus. As it remains the one hospital within range of my rural community, I’m terrified to think I’d ever have to go back.

Dad is now elderly too, but no one in my family knows or cares or checks to see if I’m still alive — me, the one with immune compromise. I wonder what it is for them to have the tables turned though, to be put under house arrest even for a short while, to see the global community vocally disallow denial about the power of pathogens. I wonder what this through-the-looking-glass landscape is doing to their belief that homebound people are hysterics who derogatorily “self-isolate” due to “phobias,” as they said of me (and others with my diagnoses), even to my doctors, not too long ago. I wonder if Dad has re-thought arguing against my life-saving ventilator as I approached my final breaths before I did get a vent in the eleventh hour, and it saved my life despite the eleven years I’ve now had regular shortness of breath and other new impairments, like those who recover from severe COVID-19.

Nobody should ever have to go through this. Nobody should ever have to wonder if they’ll be denied a life-sustaining breathing machine when their lungs stop working. It’s a horror unimaginable. And the US is facing the same horror right now.

Though I’m immune compromised and my bloodwork recently showed clear signs of both hypoimmunity and autoimmunity (as ME and Lyme patients can swing between the two), I’m likely to only get sick from my caregiver now, since in normal life I rarely see or interact with people anyway, as I just physically can’t. I am not the only one, given that people with disabilities are the largest minority group in the world, many of us are extremely fragile right now, and many of us are also pointing out how absurd it is that able-bodied folks are finally noticing that it’s not so easy to get groceries from home, and finally making accommodations many of us have asked for, for decades.

But when I was dying in the corner of my bedroom and the adjoining bathroom — which for over 7 months was as far as I could crawl from bed, so I had to lie on the bathroom floor all day just to have the strength to periodically lift myself to the toilet — by March of 2009 I had begun horrifically gasping, retching, and heaving for every breath, and Dad not only abandoned me that month and refused to pay for a caregiver after that (as did my Mom), but he then told me I didn’t deserve funds for a ventilator as I spent the next month trying to get one, since he had personally and non-medically decided that I had some undiagnosed psychological issue that made me unworthy of life. When I begged him for funds for a ventilator that April, he did acknowledge, “You are very seriously disabled and I understand you could die from your illness.” Then he explained why his contribution to a BiPap ventilator that cost nearly a grand a month to rent would only be a one-time payment of $1000, allowing me to live for exactly one more month after I outright groveled for my life. “I believe your survival, your opportunity to improve your physical being, depends upon your openness to this area of your life,” he said, referring to what he’d just called “psychiatric forces” that he felt were making me sicker. “When you equate such a suggestion from me and others with what you term our refusal to validate your real physical illness, you are simply making a false assumption, are being imprudent, and you are not responding in your best interest. You have the option of seeking psychological and psychiatric diagnosis.” I didn’t, though, have any “option” to do anything since I couldn’t breathe, bathe, or speak at that point, and I desperately needed the ventilator I’d found to rent with the help of a kind doctor, that could be brought to my bedside.

He then elaborated on his belief that “psychiatric forces” were somehow causing my gasping, heaving, and retching for every breath and profoundly low blood pressure and inability to even crawl across my own room or bathe or speak, and concluded, “I believe your survival, your opportunity to improve your physical being, depends upon your openness to this area of your life.” I had long-proven ME plus three serologically as well as clinically diagnosed tick-borne infections, right then as the H1N1 pandemic was starting to emerge and could have been a secondary factor in why I had acute respiratory distress syndrome (ARDS), though I couldn’t get anywhere for tests.

Finally, I got a far-cheaper but still quite strong noninvasive BiPap ventilator model often used remotely or in emergency rooms for acute respiratory distress syndrome (ARDS) or in homes for neuromuscular conditions that prohibit breathing (as Lyme and its coinfections can do in end-stage cases like mine right then), via a friend who quite literally met someone on a street corner, then FedExed it to me and it was brought up to my bedside, where I could swing the tubing around and use it also a few feet away on the bathroom floor. The relief at having assisted breath and getting oxygen finally is hard to describe, but I was ripped from a dug grave, tears finally and carefully sliding down my cheeks since even crying up to that point had worsened my extreme heaving for breath so I didn’t dare. I’m not suggesting that people use emergency-grade, noninvasive BiPaps for COVID-19, though a recent piece in JAMAInsights notes they might be useful and particularly if more invasive ventilation requiring intubation is scarce, Unfortunately, non-invasive ventilators could pose a danger of spreading the virus into surrounding air, which would need to be mitigated. However, I can also say from experience that in a scenario of severe ARDS like mine or what is happening in worsening cases of COVID-19, breathing tanks of oxygen is simply not enough. It did next to nothing for me to stop the retching and heaving for air, until I got the mechanical ventilation I needed.

Right now, I feel a special and terrible kinship with the most vulnerable Italians, those wanting for ventilators as doctors make horrendous triage decisions about who gets to breathe again, and who dies in the suffocative horror that is likely similar to what I experienced(and still have flashbacks about many nights of the year, and especially now). I can say this: there is nothing humane about allowing a person to die without a ventilator. I cannot think of a worse way to die — having felt my throat strain and make terrible, disembodied wind-tunnel sounds as it tried to suck in air, feeling tracheal muscles I didn’t know I had spasm with gruesome noises to pull oxygen into my hypoxic body, blacking out and seizing constantly because that’s what a body does when one can’t breathe. I can say that any comparison to being waterboarded — which is in many ways a temporary reenactment of what it is to drown in one’s own lungs from pneumonia or ARDS — probably understates what it is to experience such torture in the more-prolonged form of being left to gasp and choke and asphyxiate when one can’t get a ventilator. This isn’t to diminish what horrific torture waterboarding is, hence why it’s considered an extreme and unethical form of torture, but it’s to state clearly what is happening to many people right now, without using sanitized language.

A ventilator “flattens the curve,” in its own way, for one person at a time: it flattens the curve of acute symptoms, until an antimicrobial treatment is allowed to work on the raging lung damage. That’s what the ventilator did to me, allowing the injections of Ceftriaxone (an antibiotic typically given by IV) I’d acquired to have more time to work. A ventilator gives people a fighting chance. The problem with COVID-19 is that there is such a shortage of vents, and a “fighting chance” takes a great deal longer for the already-vulnerable like those over 60 and the immune compromised.

The Italian College of Anesthesia, Analgesia, Resuscitation and Intensive Care (SIAARTI) published truly terrifying guidelines for making these decisions as we globally fight COVID-19, guidelines based on “catastrophe medicine” and the kinds of decisions battlefield doctors and medics make in wartime. As The Atlantic reported in its translated excerpts of these guidelines, “Instead of providing intensive care to all patients who need it, the authors suggest, it may become necessary to follow ‘the most widely shared criteria regarding distributive justice and the appropriate allocation of limited health resources.’” — in other words, who lives and who dies for lack of a ventilator. The physician authors don’t mince words about who should get the limited number of vents, suggesting they should be those with the best chance of recovering quickly, thus excluding those with comorbid conditions along with those over a certain age, since precious “resources” in the form of scarce ventilators would be gobbled up by those vulnerable groups. “What might be a relatively short treatment course in healthier people could be longer and more resource-consuming in the case of older or more fragile patients,” they write, adding “It may become necessary to establish an age limit for access to intensive care” and “The presence of comorbidities needs to be carefully evaluated” because “What might be a relatively short treatment course in healthier people could be longer and more resource-consuming in the case of older or more fragile patients.”

The alternative to leaving the already-sick and elderly to die, the authors propose, would be a triage based on who gets there first, aka, a kind of stampede-and-trampling scenario where instead of the elderly and sick suffocating to death, the public would have to accept that able-bodied people would also get trampled on the way to the hospital, or arrive at the gates to find they got there too late in the game, and it was first-come, first-serve, a reality considered less humane than a more directly-imposed Darwinian (or classically eugenic) take.

I don’t envy those doctors making these decisions, which are horrific, nor do I think they aren’t anguished. Many health care workers have gotten sick, some have died, in the line of duty and out of profound empathy for our global community; they have my utmost respect and love for stepping up to the front lines, day after day.

But the guidelines and how little chance my sick and disabled friends would have of getting vents if similar standards are soon applied in the US (as many argue they will be or already are) is one reason why I could never go to a hospital. An already-immunodeficient journalist on Long Island, 27-year old Katie Blasl, wrote about her experience getting tested for COVID-19 as she gasps for breath at home with pneumonia, about the ventilator shortage in New York state, which is so overwhelmed with novel coronavirus cases. She wrote in Riverhead Local on March 15th, “We only have 600 ICU beds and ventilators left in the whole state of New York right now, Cuomo said at his press conference today. The entire state of New York!” Adding, in what I can only imagine must be extreme terror, “If things continue to progress at that rate, in two weeks, we’ll have more than 1,000 people in New York who need ventilators. And right now, we’ve only got 600.” By 3:35 am on Thursday, March 19th, CNN reported that New York was up to 2,914 cases, including 19 deaths; by 8:05 pm on the same day, the number had jumped by 2,384 to 5,298 with 32 deaths (and by the time someone clicks on that link, it will be much higher). In less than 24 hours, the cases in New York have nearly doubled.

As my dear sick friend Katherine cheekily posted on social media, “Speaking a bit for the semi-homebound and homebound, welcome to our world. Aren’t you glad your visit is temporary?” I see able-bodied people encouraging each other to Facetime, hone their home chef skills, have virtual dates, and practice their instruments to get through this (for them) temporary period of social distancing. Unlike other situations where the able-bodied are providing mutual encouragement, I’ve rarely heard a person say “just breathe.” Maybe that’s because it’s in the back of all of our minds, how people in Italy and all over are being cast out to die due to age or additional needs, the very ones who can’t “just breathe” and sing their mellifluous notes out of windows. Please, put them in them in the front of your minds now, and push harder for the socially-devalued to have access to ventilators. It is the first place global funding needs to go, along with making testing more widespread and accessible to those most in need.

Updates to this piece added during early Covid, when information was constantly changing

Update on March 28, 2020: Since I wrote this, stories have come out — for example from Spain and Michigan — about places discussing or adopting policies that prioritize giving scarce ventilators to those without preexisting health conditions or younger than a certain age. As many scramble to address the ventilator shortage and cases rise, one doctor posted this extraordinary video explaining how to use one ventilator for up to four people to save lives.

Update on March 31, 2020: News outlets report this morning that NYU Langone is telling emergency doctors to consider who gets intubated and perhaps withhold ventilator intubations from cases considered “futile.” I just heard from two local people where I live in Massachusetts that people are flagrantly ignoring requests to stay six feet apart in stores, and almost nobody is wearing masks.

Update on April 10, 2020: Massachusetts has also instituted official policies restricting ventilators, in what disabled activists are now openly calling “ICUgenics.” Please read about the important fight against ICUgenics at Fat Rose, and arm vulnerable folks with the amazing Toolkit there. In recent weeks, my own doctor abruptly terminated me as a patient while offering telehealth to others, so I’ve been fighting for medical care and access again. Ironically, he did this after cutting off my IV Clindamycin, which now many folks are saying is the class of antibiotics (by IV) that might treat severe Covid-19 cases (docs are seeing success with oral or IV Azithromycin, often combined with zinc and Plaquinil/Hydrochloroquine). More docs and ERs/ICUs are saying the type of BiPap that saved my life may not work on Covid-19 patients, and risks spewing virus particles into the air as I noted above, but noninvasive BiPaps can be fitted with multiple filters (in-line and on the machine itself), including those that are supposed to work on viruses, so it’s possible this effect could be partly or fully mitigated in situations where patients aren’t tempted to remove a mask and cough into the shared air. My own BiPap meets the higher starting pressure requirements recommended for IPAP and EPAP (measures of forced inspiration and expiration via ventilator), but Covid-19 is very aggressive (see the anonymous ER MD’s comments on this: “Vent settings- Usual ARDS stuff, low volume, permissive hypercapnia, etc. Except for Peep of 5 will not do. Start at 14 and you may go up to 25 if needed” — “Peep” is apparently EPAP, typically the lower measurement). Noninvasive BiPap still may be a viable at-home way to fight for one’s life, as I had to do before, but I don’t know; in a time of triage, people have to weigh their own risk factors and make deeply terrifying and personal decisions.



Writing the shadow spaces of ME/CFS, chronic Lyme, and Long Covid

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