The Fifteen Years I Have Been Thawing

I woke up the morning of my fortieth birthday on December 10th to the crushing sensation in my chest I had had since contracting bartonella from a dog bite a few years earlier, that felt like a vise. The sink was piled with dirty dishes downstairs. The atmosphere was an anvil on my chest. I had planned to celebrate my birthday with my lover the next day, mainly because I wanted to play the birthday messages from friends to myself without being yelled at. I was so weak that day, somehow managing to take quick pics of myself with “40!” written on a Post-It, then collapsing on the big organic mattress in my living room.

Over the next few days, I would get yelled at repeatedly by my then-lover (it always happened) who had barely finished the four-hour drive to my house before the roads began to grow impassable. As soon as the sounds of ice freezing and cracking were replaced by thuds of branches and trees, the power went out with a kind of finality I was not used to despite going through several Nor’Easters. It knocked out my electric heat and well pump when I had no working generator, and then we finally got a tiny one from a benevolent Quaker that could only run one space heater at a time. We both had dangerous symptoms of hypothermia by the time we got it. It would be called the worst ice storm in thirty years.

Then I was alone again because my lover left once the power seemed to be back on, days into the outage. Neither of the two Personal Care Attendants I had on hire then would show up, despite the winter storm preparedness training I had given them a few weeks earlier, when I told them to just come to my house without asking in an outage. The nice PCA, the one Mom’s age who was also named Mary and was way too sick to still be working, lived at a higher altitude and could not have gotten there. The other one — who lived close to me — unapologetically played truant to stay home with her exotic cats.

She pulled up several days late for work as the EMTs were loading me into the ambulance, then followed us down the Valley like a cat chasing string, likely aware that PCAs would not get paid for any days I was admitted to a hospital , a punitive Medicaid policy. She was the absolute last person I wanted in the emergency room alongside me. She quit almost immediately after my hospital discharge.

My life changed forever fifteen years ago that December 11th, the night the ice storm hit. I was hospitalized until December 19th, only wheeled outside one night of fresh air relief by a kind nurse who showed me pictures of her brother and her boyfriend stationed in Iraq, and her big floofy dog, as snowflakes started to dance in the air around us. The rest of my hospital stay was toxic and devastating and is still crystal clear since it sharpened itself into focus to become the hyper-lucid flashbacks I’ve had since then, of that and the much-greater trauma that followed. I have been slowly working on a book about these events for over a decade.  The period that followed starts and ends with near-fatal abandonment and neglect exacerbated by familial hostility and indifference.

I spent over seven months after the hospital unable to move or speak or bathe, trapped in the corner of my bedroom, only able to stumble-crawl each day to the adjoining bath a few steps from bed, where I had to lie all day every day next to a filthy toilet, because I could not even get enough help for toileting thanks to the inhumanity of my family, and I was ultimately gasping and heaving for breath in respiratory failure, barely able to lift myself from the floor to the odd wooden toilet seat.

When I began to recover in the years after I first described these events in my post called We, Tuskegee fourteen years ago, I had to slowly build up cognitive stamina to write for ten or fifteen minutes at a time. It was all a version of leaning to walk again by learning to crawl. My brain still works poorly since my near-death. Writing is hard on a level it never used to be, even though it was super challenging from the early weeks of severe ME/CFS due to how extreme the cognitive dysfunction gets — but it’s impossible for me to hold a train of thought and I am not the same person I was before the ice storm. I am significantly more disabled, and I was already a severe ME/CFS patient with secondary Lyme and coinfections.

So, this update will not be inspiration porn, and will be unapologetically discombobulated with headings for clarity. It is hard for me to finish anything at all, because I begin flipping through the hundreds of tabs on my screen that serve as my memory bank. I start doing a visual project that will not tax my brain as much. I start scouring Sally’s Baking Addiction for new holiday cookie recipes. Like anyone recovering from complex trauma, I also don’t want to rubberneck at the terrified, helpless person lying on the bathroom floor, trying not to flash back. To me it all just happened yesterday, not fifteen years ago today.

The Aftermath First

Some people initially expressed skepticism at my story but yes, I really did spent 12–15 hours a day lying next to a filthy toilet for over seven months (then kept fighting for my life less continually for years, in this thaw-out period). Yes, I was alone for 24 hours a day most days of that, with PCAs working a few hours a day downstairs then plunking food beside my bed while I was in the bathroom. I did come as close as I believe is possible to dying there, crammed between water bottles and notebooks and my netbook, lying on wadded towels and unable to even move my toe without risking convulsions and retching for air. Yes, it was torture. Yes, I was unbathed except for wiping down some part of my body with baby wipes each day or two.

And no, I could not have even pulled off a suicide on my own, unless I had used the razor cutting tool I found in the vanity next to me, as even that required more strength than I probably had and I could not get to any other needed supplies. I had to consider the razor despite its potential for failure, as I was growing too weak to ever even lift my body from the floor to the toilet seat to use the commode. I get so sad when I think of this, as I wanted to live. Yes, I begged for help via any means I could as I was slowly suffocating there in respiratory failure. 

But the fifteen-year update after the ice storm starts with my family, who saw how bad it was, knew that the cost of leaving me without care was death, and left me to die there. Since the ice storm, I have been largely estranged from all of them, ever since they abandoned me without adequate caregiving when I would almost certainly die from that neglect, when the bathroom was as far as I could stagger each day from bed for over seven months while I begged them for familial or hired caregiving and they each only agreed to assist me for a few days (Mom covered more, around two weeks in total, then refused to get a replacement caregiver of any kind when I was out of options).

Since then, they all went no contact with me in the form of giving me the silent treatment and stonewalling me every time I tried to press them for accountability for their near-fatal neglect, aside from an email I get once a year or so from my Mom around the holidays, when she sends me a birthday and a Christmas present. It is a classic stalemate: the truth-teller calling out abuse, and the perpetrators covering their children’s ears so the next generation will never know. 

I had no option to go no contact myself, nor did I desire it since for people living in extreme isolation from severe ME/CFS, that is a brutal pill to swallow. I wanted a family who could give any fucks about a disabled person. But mine apparently cannot, and my aunt and Grandma — the last two people who did — died during this time, in 2011 and 2018 respectively. I read the silent treatment is only given in adulthood by narcissists and emotionally immature adults. And that tracks about my family.

The collapse of my family relationships is more nuanced, but it is also essentially that. I have been scapegoated, split out, tossed on the mercy of a world that does not want severe ME/CFS or chronic Lyme or MCS patients, and my family — the people tasked with caregiving duty in the US — almost ended my fragile life by fatal neglect. I have spent fifteen years fighting to fully recover from these events, trying every treatment available and imaginable; some pretty extreme, most ineffective. Fifteen years out, I accept I may never get back to the level of already-poor health I had before the ice storm (I haven’t, but have made some progress), and I am lucky to be alive.

A Night Right Now

Between three and five am, I now wake up most nights, and often am awake for hours, or just never fall back asleep. I listen to YouTube tracks on my phone next to my pillow to think about something else, with my eyes closed —usually about near-death experiences, family scapegoating, stuff about simulation theory and parallel dimensions, or whatever Hertz will heal my tissue or mitochondria. The other night a Black preacher really spoke to me, talking about how God will isolate people who are chosen, how isolating individuals is a way that God singles them out. I am not a religious person, but his next video was about how God especially chooses the people who wake up between 3 and 5 am — whom he instructed to remember meaning and symbols in our dreams and then meditate and pray on our role as watchers against evil in the twilight hours — and it made me feel purposeful in my trauma, as if I have been chosen offset to amorphous evil and human cruelty by just lying there awake, dealing with whatever comes up.

I listen to the near death experience stories because, as I later tentatively told my acupuncturist who had also become my friend, I think I did die then, and she exclaimed she’d witnessed my soul leave my body at that same time. She had tiptoed into my room several times, inserted needles, and left to wait downstairs because I could not handle the stimulation of someone standing or sitting next to me for long. I genuinely feel like a significant part of me left my body in those terrible months after the ice storm, and five or six years out, I managed to listen on the phone (not speaking except a brief whisper) to a Shaman in Asheville lead me through a Soul Retrieval, and tried to start getting myself back.

I believe I died in the most metaphysical sense, as the part of my spirit that stayed behind had to also relearn how to be human, because the disgusting, dehumanizing reality I lived through completely broke me. I also have something like Cotard’s Delusion now, where I often must remind myself I’m not dead and my mind doesn’t fully believe it. And sometimes, listening to a simulation theorist on one of these channels or some lecture by Bashar about shifting between parallel vibrational realities, I’m fairly convinced I’m just dead in the world I once occupied, and that my family stopped talking to me because they literally think I don’t exist, even if I’m screaming for them to listen.

The Question That Has To Be Answered

Question: who will you depend on if you become suddenly disabled and need lifelong caregiving? 

Some adults know the answer, if they have spouses or committed partners who won’t freak out or file for divorce as composer David Foster did to former Real Housewife and Lyme sufferer Yolanda Hadid. Most college or graduate students — the age I was when I became suddenly disabled at 23 — would say family, if they had any answer at all. Would it surprise anyone in oft-neglected GenX that I — unlike millennials and GenZ and some people in my own generation — had no reassurance I could go home again?

But my family sure spent years dangling carrots around caregiving, pretending they would prioritize my survival needs while avoiding any inclusive (of me) conversations about it. Because of this, and because there is no backup system anyway in this country besides family for the severely disabled people like me, I had to believe that their love and morality would prevail. But the opposite happened. When challenged, they proved they were capable of very terrible things.

In the US, 79 percent of care for disabled adults is paid for or provided directly by families or friends, according to the National Center on Elder Abuse, and most friends disappear when one gets this sick. Another 11 percent of disabled adults rely on a combination of volunteer and paid PCA (personal care attendant) services. Only ten percent, the sad category I fell into, are care orphans, without volunteers or family to do the bulk of the caregiving work.

The percentage of disabled adults who are forced to rely on self-paid care or Medicaid-funded PCA systems often navigate wait lists years long just to qualify for these services because many states have limited slots, so a game of musical chairs ensues with many people simply dying while on wait lists. Between 2018–2021, the number of people on these wait lists fluctuated between 820,000 and 556,000 in the US, with 73 percent of them comprised of adults with intellectual and developmental disabilities, and 24 percent of them adults with physical disabilities; the remaining 2 percent were medically fragile or technologically-dependent children, people with traumatic brain or spinal cord injuries, and people with mental illness. These are serious medical issues that urgently demand caregiving, and people cannot get it. 

To this day, people are in denial that the extrafamilial backup system could be so atrociously bad in this country, but it is — and it is in many other countries too, even in medically-humanitarian places like Canada and Scandinavia. Poverty, a lack of stable housing and medical care and services, and families not picking up the slack kill a lot of us. In Canada, two high profile cases of legal assisted suicide were profiled in 2022, both of patients with multiple chemical sensitivities (MCS) (a common comorbidity to ME/CFS and Lyme and now Long Covid, and one of mine). Both pursued legally-assisted suicide because of the lack of affordable subsidized housing (safe, nontoxic housing is often the only way MCS patients stabilize or heal) and below-poverty disability payments. 

In Anne Ortegren’s farewell letter before she chose assisted suicide in 2018, she wrote: “Sadly, for all the work done, we still don’t have adequately sized specialized biomedical care for ME/CFS patients here in Stockholm, Sweden — or hardly anywhere on the planet. We still don’t have in-patient hospital units adapted to the needs of the severely ill ME/CFS patients. Funding levels for biomedical ME/CFS research remain ridiculously low in all countries and the erroneous psychosocial model which has caused me and others so much harm is still making headway.”

Mind you, this is what Long Covid patients — many of whom have ME/CFS diagnoses now — walked into around the world: a terrifying black hole where services should be.

Nobody can expect to receive caregiving as an adult in America, and that responsibility is shuttled over to families who our culture insists will be functional, generous, able-bodied enough to take on the task, and willing. So, I had to keep begging mine. My only option for caregiving is still a Medicaid-funded “waiver” program for PCA services at home — a program with different rules, different requirements, and different levels of care in every state. Some of the absurd requirements in my own state are these: I can’t get married because if I needed that person to be my PCA, it would be illegal to hire them as my spouse. Also: I cannot ever leave the state and expect to get comparable PCAs services in an adjoining state, as Connecticut for example (CT and VT are the closest states to where I live, the only ones that I could ever conceivably move to at my level of disability as they’re both at a distance I could travel maybe once every 7–10 years) has a wait list of several years, with no guarantee that after I gave up my Massachusetts residency, waited a few years to qualify for PCAs (impossible for me), that then I would get comparable care hours to what I receive in Massachusetts.

In Wait

By the time the ice storm hit, I had spent over sixteen years nudging and then begging my family to step up and become my part-time or full-time caregivers, as I plunged into increasing disability from primary ME/CFS and then secondary tick-borne illnesses invading my heart and nervous system  —namely Lyme, a strain of bartonella I contracted from a dog bite (likely b. vinsonii berkhoffi, which is highly cardioaffinitive) and babesia duncani, which is sometimes called “babesia on steroids” — a parasite resembling malaria. They pretended for over a decade that a care plan was just around the corner, as I basically swung from one hasty, clinically-dysfunctional (often dangerous and abusive) relationship to the next so that I would have a local emergency contact or someone to rush over in the middle of the night. The rare times I had gone to emergency rooms, I usually had to call a cab home. I was just too floundering and sick all of the time to establish a good contingency plan. 

For four years before the Ice Storm, I spent my days lying down with my legs up on a wall and my ass on a pillow, as it was the only thing that relieved my bartonella-induced heart crush, going from bed to mattress to bed. I could almost never leave my house, could rarely interact with people, and assumed this strange posture of waiting for my family to fulfill the caregiving duty that only families in our country ever effectuate. I was so desperate for them to act like reasonable people and not draft dodgers, that I tried and failed to get approved for Adult Foster Care, a program that is supposed to give abandoned adults some invested people to call, but is designed — I soon learned — for developmental and dementia-related disabilities and not mine.

I will not list all of the effort I put into finding a functional back-up system, but from my vantage point, my efforts to survive were both wildly creative and Herculean. Volunteer or “It Takes a Village”-style care for the severely disabled is a myth for most of us. As I often posed that question to my family members, would your best friend quit her job, and devote the rest of her life to being your full-time caregiver? Of course not. My family’s dodging of this familial caregiving duty is a study in demand avoidance or narcissistic traits.

But they are smart, charming and fun, so how could we become the Stanford Prison Experiment? I saw my Mom and sister every four to six months (often almost never seeing anyone else) until 2008, and I had no reason to believe they were just flat-out lying to me about their efforts to get into a position to help me more. My Dad stayed involved but he is a little stunted at interpersonal intimacy while being astonishingly personable on the radio. I wrote in high school on my only real trip to Western Massachusetts before I got trapped out here by illness — a prospective colleges trip with my Dad — that as lovely of a time as I had with him, it felt like I was always being interviewed. Still, if that’s the worst thing a teenager can say about her Dad, that’s pretty positive. My stepparents were more of a challenge but I’ll get to that. I have seen a lot of way-more-dysfunctional families than mine step up when someone needs caregiving. In many families, this is a sacred idea, no matter how bad things get. My sister later tried to claim her promises to move closer for years and be my primary caregiver were not really promises, just statements of hopeful intent. But please.

My family’s cruelty started off quietly, like they were slowly ramping up the electroshock dial. In 1998, just before I became too ill to ever travel home to Illinois again, I had begged my Mom to allow me to move in with her for caregiving, which meant I needed her to get a hypoallergenic dog as I starting having anaphylactic-like reactions to most other breeds. She wanted a dog, and I only asked for this small accommodation — one, for the record, the Obamas readily gave to their daughter who was allergic to dogs, and that’s why White House dogs Bo and Sunny were a notoriously hypoallergenic breed. All other family members had pets I was severely allergic to. So, what did she do? She met with bichon frise and Portuguese water dog breeders on my behest, and then one day adopted a shedding terrier mix my abusive stepdad wanted. Yes, the same guy who used to have two hypoallergenic standard poodles. 

Mom knew this gesture would make spending even an hour in her house prohibitive for me, and the final trip I made home after that, I had to stay in a mobile home Mom was fixing up for a relative with air filters running, in the same trailer park where my Grandpa had killed himself in 1985, when he left a note saying his health was failing and he didn’t want to be a burden because he might need care, but the local paper had reported that “fear of cancer” led to his suicide: a phobia, basically. I was sixteen when he did it — and he did it in a trailer bathroom . I was temporarily-abled then and an active, straight-A student, and as you might have guessed Grandpa's suicide is a focal point in my upcoming book — the moment when the burden of erasing oneself fell squarely on each sick person in my family. 

My stepdad had always been verbally and emotionally abusive and Mom enabled it. “Peggy is my Sagittarian daughter” Mom would say about me, as if my fire incited his. At the time, I still could not imagine that Mom would be willing to go so far as to end my life to placate her husband, as she later proved — just as my Dad would show he was willing to end my life to placate his wife — because I was always close but also too enmeshed with Mom. But the scapegoat thing grew more and more literal, until I became the literal goat cast out to die smeared in blood to represent the sins of my family. 

My sister did promise from 1998 or so until she got married in 2003 that moving closer to me was her number one priority in life, told me regularly that I was her best friend, and then abruptly took this reassurance back. In the ensuing years of her difficult first marriage, she became increasingly frustrated and ultimately infuriated with me for staying sick, even staging a bizarre intervention of sorts in 2007, which I later saw on Intervention does happen to non-addicts who simply “refuse to treat” their diabetes or whatever else.

Out of Providence

We had tossed about multiple ideas after I had arrived at my rural, chemically-safe house in a wooded town up in the hills after pulling off a massive move (for me) one state over from Rhode Island to Massachusetts in 2004, but my parents insisted every idea would mean they would have to leave my stepparents, a nonsensical retort since my stepmom had loved Western Massachusetts and would have enjoyed the proxomity to New York City, and my stepdad is the only one of us with family in Massachusetts. We discussed them living in New England part-time or only coming out for six months to secure a functional care plan. My parents were both in stages of soft retirement then, and had the liberty to move basically anywhere, but randomly they bought second houses in other far-flung states without consulting nor considering me. Mom and my sister briefly conspired to push Dad to date a woman with a disabled daughter in New Hampshire when he was on a trial separation with my stepmom so that he would want to support and travel to see me more (but he refused to stray), and friends and PCAs and doctors and health care providers wrote letters to my family begging them to step up, including letters from other patients too sick to move or to travel, a reality my family would not believe. They just would not step up.

They tried to make it seem like a fun project, though, to pin my care needs on whoever else would do it, a game of toss the disabled potato. In retrospect, this is as sick as it sounds, but at the time, I agreed with my sister that getting Dad to date a woman who was not ableist and did not hate her own disabled child (as my stepmom apparently did with me) seemed like an answer to the impossible problem of nobody wanting to care for me. My sister also repeatedly asked friends of mine who were on the verge of moving out of state at several points if they would care for me indefinitely (gratis), and they of course said no.

I had no choice but to go along with these Hunger Gamers (though Katniss Everdeen in the real Hunger Games volunteered to be Tribute and risked almost certain death to protect her younger, frailer sister, and that would be me in this lineup). My sister’s ex-boyfriend at University of Southern California where she got her undergrad degree — a dude named Hardy — went on The Dating Game while they were still together, and won, then took a trip with a random woman to Tennessee. We used to crack up while watching the VHS of this episode on repeat every family holiday; it was hilarious to all of us even though he had basically cheated on her, but five minutes of fame to Central Illinoisans made that irrelevant. Getting me a caregiver who would be devoted to me for life was just like a matchmaking game to them. If they won, it would be the ultimate jackpot, exempting them from familial caregiving duty to focus on the fun stuff.

Rebranding Crazy

Instead of working out a care plan, my family started turning toward erroneous psychogenic theories of ME/CFS, as this became their out. They began to blame my symptoms and immobility on me, my thought process, and an alleged lack of toxic positivity, and began acting like people in a New Age therapy cult. A lot of it was subtle at first.

To this day I do not know if they are actually in a cult because many cults that specifically try and recruit social progressives — from Twin Flames Universe to the Bikram Yoga cult to Jonestown to Scientology — preach physical and emotional healing or via mind control and shaming discipline. In Scientology, this takes the form of their pseudo-psych process called thought “auditing” along with infusions of nutrients as well as their “Purification Rundown” which is a detox program of saunas, nutrients, and exercise. These are considered standard cures for many physical and mental illnesses in a style that is barely different from the approach of many integrative docs I have seen who have given me Myer’s cocktails or IV chelation and told me to try brain retraining (which didn’t help me), and for me — a person who has at times gotten some benefit from far infrared saunas combined with other detox methods — some of it sounds totally reasonable, even though I believe everything Leah Remini says. 

The “Auditing” process is also less weird than the oddly-legitimated suggestions of William Reeves, Fred Friedberg and others the NIH funded around ME/CFS who might as well be spinning plates in front of our eyes, like Friedberg’s idea that pursuing “uplifting experiences” would somehow treat my illness, or Reeves’ papers pushing the idea that ME/CFS patients have kinesiophobia, aka fear of movement. Scientology’s own website describes a primary purpose of auditing as “helping the individual rid himself of any spiritual disabilities,” but their treatment of “spiritual disabilities” is not far afield from the way many officials insist that ME/CFS be treated via pseudo-psych, or spiritual-sounding concepts like “uplift.” 

Jim Jones’ method involved demonstrative faith healings, and Jonestown was initially funded — in large part — by the social security checks of Black devotees sixty-five and older, who were often seeking a safety net as they aged and needed community care. When they were all mass-murdered in the isolated compound in Guyana, when over two-thirds of the residents were Black, many of them also simply didn’t have the physical mobility to even try to get away (“The Demographics of Jonestown” by Rebecca Moore). Yet this racist, ableist, ageist mass murder — and its ultimate dosing of cyanide into a generic fruit-flavored drink done by white women with nursing skills who surrounded Jones (mostly his lovers, see “Jonestown: The Women Behind the Massacre”) — is reduced to a cultural meme about brainwashing and Kool Aid, not a story about people so desperate for a social safety net for themselves that they entered an abusive situation. Jim Jones appealed to people via not just utopian ideas, but by recruiting those happy to hand off social security checks to anyone who offered more than a social security check could ever buy.

My family managed to present as caring about me, while covertly (and ultimately, in open air) calling my disabilities “phobias,” “delusions,” “hysteria,” and akin to the work of an “actor in Hollywood.” But I was diagnosed with ME/CFS by a Harvard-trained infectious disease doctor, went through decades of re-proving my disabilities to the social security administration, and have had the support of at least three different Ivy League-trained doctors who confirmed I cannot move or travel in signed letters, and still my stepdad referred to the people who believe in my disabilities or my inability to flown out to “Mayos” as he called the Mayo Clinic, as a cult who are “drinking the Kool Aid too,” a line he said in front of witnesses with a running video camera in 2010.

Jim Jones’ megalomaniacal persona meant he needed to look good in other people’s eyes, to combine what psychologist Sam Vaknin (author of Malignant Self Love: Narcissism Revisited) describes as a dangerous blend of victim identification plus virtue signaling — a combination Vankin notes is also common in many other conditions that can include narcissistic, grandiose, antisocial, alexithymic, low empathy, or psychopathic features in sizeable subsets, including borderline personality disorder, antisocial personality disorder, ADHD, and other diagnoses that are ubiquitous.

Vankin thus believes there should be just one personality disorder in the DSM, with overlays. Intimate partner violence expert Lundy Bancroft has likewise cautioned against the trend of calling all abusers “narcissists” as shorthand not only because it’s inaccurate and discounts the comorbidity of these traits and diagnoses, but because it exempts societal responsibility for the attitudes that lead to abuse. This last point is critical about ableist abuse and violence, as these are socially endemic and more often than not perpetrated by families. If we assume that all of these families are clinically NPD, it exempts the rest of us from looking at the spectrum of narcissistic and grandiose traits in our culture, and in ourselves. 

So, I agree with Bancroft that it’s dangerous to stick all abusive and violent behaviors under the umbrella of “narcissists” and spare the bystanders, but I also got a lot from one YouTube video I saw by Dr. Ramani Durvasula (author of Its Not You: Identifying and Healing From Narcissistic People) called “Why Narcissists Don’t Like Sick People,” in which she lays out the dramatic aversion narcissists have to physical illness, and those with narcissistic traits will — like my family members — promise but not deliver on caregiving, and express hostility toward the chronically ill and disabled people in their families while jockeying to look heroic or simply virtuous. 

Because Jones combined virtue signaling along with acknowledging the legitimate social victimization of the groups he targeted, he successfully recruited people from the margins — by preaching about oppression and envisioning an idealized society in which community care and socialist concepts would result in everyone getting their needs met, even the disabled and elderly and single mothers who could not afford childcare. What interests me about this is how much it reflects upon the fact that then and now, the safety net for disabled and aging people who need caregiving or financial support is abysmal, pushing people to see a doomsday cult as a viable option, or directly paving the way for people in a doomsday cult to murder the vulnerable — as with Lori Vallow Daybell, who murdered her autistic son JJ along with daughter Tylee whom Vallow Daybell claimed was in constant pain and had undiagnosed health problems, though Vallow Daybell also claimed her children were possessed by demons and zombies. 

I would be lying if I didn't say that Daybell's speech at her sentencing hearing, where she talked about how much her daughter had suffered and how her children forgave her from heaven after being brutally and tragically murdered, sounded to me exactly like most people who murder disabled relatives, aside from the retro demons and Hollywood zombies.

Vankin notes an infiltration of people with narcissistic, psychopathic, and grandiose traits in social media and politics, and in general, I can speak from personal experience that something about chronic illness and disability creates a magnetic attraction for grandiose people who want to look good while being terrible. Doctor Ramani suggests planning for care well in advance of needing it if one is surrounded by those she considers narcissists. The problem with that is that we live in such a narcissistic and ableist culture. The harder truth of society is not that there are Malignant narcissists lurking in every business meeting or bar, but that friendly Midwesterners can abandon their beloved daughter and sister to die next to a filthy toilet, and they don’t think they did anything wrong. 

Popularizing Psych

People often ask me, how did it come to this with your family? Like anyone gravitating toward anything cultish, they wanted a faster-food solution to a complicated social problem. My family members all had a penchant for a spiritualism mixed with Pop-psych toxic positivity. My sister used to join Christian-lite churches and often invited a hilarious local Unity Church minister to play Encore at my Grandma’s house. My parents were dabbling in unusual religions like Baha’i at the time I was born (and named me Peggy after a Baha’i friend of theirs — Baha’i believes in “the essential worth of all religions and the unity of all people”), as a reaction to Mom once wanting to be a Christian minister and then changing her mind after spending a year in Beruit. We were Unitarians as kids. Dad was the radio voice of the left in an area that usually voted red. Mom opened and ran the longest-running natural foods store in my hometown, and used her masters’ degree in psychology to ask my friends probing questions. I grew up working at Mom’s delightful store and cooking dirty rice with pine nuts and mushrooms for vegetarian potlucks.

While a lot of these pursuits were revolutionary and cool, and my own YouTube playlist is not that far off the nose — each of my family members also had character traits that would predispose them to the teachings of a therapy-style cult that pushed mind control-disguised-as-therapy or self-improvement, and I soon learned they were holding secret meetings with therapists I did not know about and that these therapists included one of the highest-paid ME/CFS pop psych peddlers out there: the aforementioned Fred Friedberg, who believes taking ME/CFS patients out of their dark, dank bedrooms into “uplifting experiences” can heal. 

A couple of years prior to the ice storm, Dad had already begun to pepper his emails to me with references to how I needed to go to therapy — not just any therapy (which I had of course already done), but to talk to advisors he chose for me (including Friedberg, who he was pushing me to talk to in 2006) — if I wanted him to continue any financial support. My parents gave and still silently give me enough support above my below-poverty SSDI benefits (which have been on the lowest rung since I got sick at age 23 and was officially considered disabled and unable to do any gainful employment by the social security administration by age 25 — in 2023, these benefits finally increased to just over a thousand dollars a month) to afford essentials like food and heat but not caregivers.

As a Midwesterner with a stoic backbone, I wasn’t supposed to need their help, especially Dad’s. I was supposed to figure it out, and perhaps live like my high school friend who spent that one summer in Urbana eating only potatoes with an occasional side.  Any Midwesterners reading this will fully understand when I say that I was also floored to learn that people in New England seemed to have no reservations about moving home after college, for whatever reason. Even my Grandma, when I interviewed her back when I was seventeen, about being seventeen, said she was afraid at that age of "going out on her own" and "being independent," as it was expected of her, and she had twelve siblings.

Because I did not know Fred Friedberg’s name at the time my Dad met with him in 2006 just over the Connecticut-Massachusetts border (in an initial appointment arranged by my sister), the connection only registered later when I began to research the therapeutic brainwashing of my family members. Friedberg had presented a revival tent story — claiming he healed himself of ME/CFS by pursuing those “uplifting experiences” and other versions of toxic positivity, along with the more-reasonable idea of “pacing,” which has been used abusively on ME/CFS as it was in the PACE trials — former New York Times writer David Tuller dissected this in depth.

At a time when psychogenic ideas about ME/CFS had only gotten worse through the ’90s and into the ’00s, Friedberg ascended to become the President of the IACFS/ME, the largest professional ME/CFS organization in the world, where a psychologist did not belong and his rulership sent a dangerous message. Government ME/CFS appointees including Stephen Straus and William Reeves were already pushing the NIH and CDC’s strategy of viewing ME/CFS as a “mindbody” illness, which to them meant a somatization disorder with kinesiophobic aspects. This trend has gone semi-dormant but never went away. During the pandemic, Friedberg continued to be deeply affiliated with the IACFS/ME which is now recruiting Long Covid professionals, and he proceeded to publish more papers on “uplifting experiences” as a treatment for ME/CFS as late as 2022, as a frantic effort to retain the idea that mind could control body even with something as virulent and catastrophic as Covid. The 2023 IACFS/ME conference was held at Stonybrook University, where Friedberg is a professor, and he seemingly had a heavy hand in it. 

Friedberg received millions in NIH grants to do his ridiculous studies on “uplifting experiences” and similar, with much of this research based at Stonybrook. Meanwhile, legitimate ME/CFS researchers reported having to face NIH rejection repeatedly and often had to rely on private funding. Several somatoform DSM diagnoses have managed to stay influential for decades. These include “Illness Anxiety Disorder” and “Somatic Symptom Disorder,” which was only added to the DSM when it was published as DSMV in 2013, and borrowed from the language of legitimate physical illnesses to try and push the agenda that ME/CFS might just be neo-hysteria. 

My sister did her intervention-style maneuver around 2007, when she blindsided me by flying out from Illinois before a medical appointment that had taken some two years to get to just half an hour away, then tried to convince me to get on an airplane, while storming off repeatedly each time I reminded her that travel was extremely dangerous for me. She later confessed to me that the family had been meeting covertly with a local therapist as well, at a center run by Dad’s former radio bff that also ran substance abuse programs, the likely explanation for my sister's behavior.

Mom then began to throw around the word “kidnapping,” including when I was hospitalized after the ice storm and she suggested busting me out of there and taking me to Illinois (“haven’t you ever heard of kidnapping?” she said as I frantically tried to summon outside help). For several years, there were veiled threats about what they planned to do to me, probably much like the ones Britney Spears was receiving from her parents by then before they plunked her into an abusive conservatorship in early 2008 (the year of the ice storm), in the midst of those same DSM trends.

These threats were already terrorizing, and my family had begun intimating that I had “psychological factors” (another DSM term, officially “Psychological Factors Affecting Other Medical Conditions”) that none of my doctors agreed with, and that they might force me to treat these alleged “factors” that aligned with the DSM’s “factitious disorders” or somatoform diseases category. The committees for the DSMV revision years before its 2013 publication were starting to create vague but more-palatable-sounding labels for factitious disorders that psychologists and psychiatrists could use to brand people with legitimate physical illnesses, to appease drug companies wanting to hammer us with more antidepressants and sleeping pills since ME/CFS patients still, and it's almost 2024, only have the option of off label meds to treat our illness which makes us fair game for predatory Big Pharma factions.

If my family could redefine part of my illness — say, the severe part — as mental or even “mindbody” with a wink and a nod toward the government’s somatization version of that term, then they could insist I needed some form of lockup care they could not provide at home anyway. And get back to the fun stuff. 

Nesting Ovens In the Dark Woods

At the time of the ice storm, because Medicaid programs are typically income-and-asset-based, the PCA “waiver’s” eligibility (it is called a “waiver” because it’s an alternative to institutional care that Medicaid doesn’t want to pay for anyway) was based on the requirement to stay poor on paper and have less than $2000 in savings and very limited assets. Just getting on PCA services (I was in year twelve of ME/CFS before I did) does not assure that functional or competent people — or any people at all — will take the job, show up, and do it. There is a massive caregiver shortage in this country that got even worse in the pandemic for obvious reasons.

This is why, during the seven plus months I was trapped in the corner of my bedroom and the adjoining bathroom after the ice storm, my friend in Canada spent about twenty hours a week making phone calls, just trying to get PCAs to show up and fill the hours I had for them to work; several quit without much if any notice, some came without vetting and let themselves into my house in the woods via a key above the door. The hours I got then from Medicaid were not even close to adequate for my care needs anyway, and the gaps and instability were nonstop terror for me. I only got some relief when a mini fridge I ordered was placed beside my bed in early April, so PCAs could leave extra food and water there and I knew I would have food and hydration for a few days.

Even though I had approved PCA coverage for several hours a day, every minute right then was life-threatening, and that coverage didn’t mean people would be there or know how to do anything. Around February, 2009, when all of my chemical and sensory stimulation sensitivities were amplified to the point that exposure felt like neurological torture, one PCA melted a large, plastic-covered toaster oven I stored in the regular oven as I had nowhere to put it — but there was a sign and instructions alerting PCAs to that weird fact. She not only filled the house with noxious smoke that quite literally could have killed me, but she had a tearful meltdown and my Canadian friend had to spend hours talking her down on the phone, to keep her from walking out right then while I was upstairs gasping for air. I could not even fire her, and she quit within weeks anyway. 

One of my three reliable PCAs from that time, Melissa, described the absurd impossibility of trying to help hire replacement PCAs for me:

“Most of the people I spoke to sounded as though they were barely able to care for themselves, let alone someone who is seriously ill. Many of the people I interviewed were looking for an easy paycheck, they really didn’t want to do much. More than a few of the folks I talked to seemed to have trouble responding appropriately to a simple telephone interview. One woman went on about herself for ten solid minutes (and nothing about the position, just about her life, her bad back, her difficulties with men) I could barely get in a word edgewise. Eventually I just hung up the phone, there was no way she was hire-able.

There is no training offered for PCAs, nothing is required to be a PCA except for a job as a PCA. There are no regulations, registrations, or even expectations extended by [the fiscal agency], or by the state. As a result, the pool of prospective PCAs contains some sketchy folks. I don’t know that I would have trusted most of the people I talked to to house sit for me, let alone care for someone I care about.”

My disabled friends often describe their caregivers as sociopaths, psychopaths, abusers, unemployable people, or thieves. Yes, some PCAs are awesome, but often those devoted, genuine caregivers are just a welcome, happy blip in a sea of bad actors, because they tend to move on quickly to other jobs that have more advancement potential or decent benefits on the level of Amazon or WalMart — both of which pay more/have better benefits locally than what my PCAs get here. Full-time PCAs don’t even receive health care benefits in Massachusetts, a state which also penalizes them if they don’t buy into a health care plan.

The Ice Storm Revisited

When I woke up the day after my birthday on December 11th, I did not know how I would ride my stairlift downstairs to find food since the dropping barometer had made me even weaker and my heart felt withering and whispering in my chest, but at that point there were only storm warnings. 

With my lover four hours away when the power went out again, I made that dreaded call to 911 and landed in the small local hospital that knew absolutely nothing about ME/CFS and was outright hostile toward chronic Lyme disease and coinfections, plus missed obvious signs of deathly complications from babesia duncani.

When the flashbacks hit in early morning now, I hear the horrible sound of ice encasing branches and then cracking and shattering; the terrible wind whistling through the walls of my house that “used to be a camp,” said the realtor before I moved in, when I could not have imagined some New England homes would be so poorly-insulated. In that brief window when the power had returned, I saw the NOAA map online: my town was completely blacked out, the epicenter of the storm, with 100 percent of residents without power. Though my address was on the town’s vulnerable residents’ list and that is why my power came back on briefly, no town official checked to see if I was alive for over two days. I got a message at some point that my friend’s PCA had also gone AWOL, though the PCA was a volunteer firefighter in the same town, and my friend had quite literally almost frozen to death before she was rescued by our disabled friend’s partner.

During that horrific time post-hospitalization in late 2008 and 2009, when I was only able to crawl to my bathroom floor and lie there all day trying not to die, my family almost killed me by fatal neglect, a stunningly effective way that people snuff out unwanted disabled relatives. My sister, mother, and father (with my stepparents watching) brutally abandoned me without care and refused to pay for or help recruit a caregiver after I managed in haphazard efforts to cover a short amount of time with people too disabled to actually help me, when I could not cross my room, bathe, or speak and was going into respiratory failure and septic shock.

To this day, people express disbelief that anyone could be just discarded as I was, even though Medicaid in recent months kicked off ten million Americans off Medicaid (the primary payer for non-familial caregiving for disabled people in the US), terminating their coverage largely for “procedural” issues after cursory reviews — and many of these Americans are in assisted living facilities with severe disabilities or dependent on Medicaid-funded home care and are now wondering how they will survive (and I’m certain many won’t). DisabilityScoop reported in November, 2023 that “Millions more are expected to lose Medicaid in the coming months” and that these 2023 events that just happened are “predicted to be the biggest upheaval in the 58-year history of the government health insurance program for people with low incomes and disabilities.” I have heard barely a whisper of outrage.

In my years of researching the systemic problems of caregiving in this country to slowly tell the story of how these failures left me at the mercy of an unstable family that chose to scapegoat and gaslight me while making a twisted sculpture of clown balloons out of inflated promises and then almost killing me, things have only gotten worse — despite some outrage momentary stirred up by the pandemic when disabled people died in disproportionate numbers.

As soon as Covid officially struck the US in 2020, I read numerous stories of disabled people who had been on PCA services in their states and “had to” move in with aging parents or into nursing homes despite the pandemic risks, because their PCAs split town. I was struck by the words “had to” in many of the articles — words I hear from disabled people a lot (“I had to move home, it was my last resort”), but also hear from families (“I had to care for her”). It feels almost shameful to say that I couldn’t move home both before and after my Mom barred me — even before 1999 which was the last time I could travel, move, or be moved more than one state over  — because my family doesn’t have the sense of duty that would lead to them thinking they “had to.” After she was kicked out by her “Boomer Narcissist” parents (as she called them) while peeing in a bedpan, my late friend Nicole once wrote me a fantasy about showing up on her parents’ doorstep attached to an IV drip of morphine, because they would “have to” deal with her then. Unsurprisingly to me, nothing in society mandates care for us, the way it does for children. Nobody has to care for a grown-ass adult who needs more care than a toddler. 

I only had about $1400 in savings when the ice storm hit, did not control my own house and thus no equity to borrow against, and made around $900 a month then in SSDI income. My family has only ever agreed to pay for caregiving (for over three decades that I have now been sick) in the form of paying one person for 2 months via a mutually-agreed stipend, structured like they were paying for an artist-in-residence and not a caregiver. In reality, I needed then and beyond (and still do really) a preposterous 100,000 dollars a year to pay a functional, full-time caregiver — the cost ME/CFS expert and Stanford researcher Ron Davis stated a severe ME/CFS patient needs to pay a caregiver above what insurance including Medicaid provides. There is simply no way to make this fiscal equation work, which is why most families know they "have to" provide some hands-on care.

For over seven months, as I slowly suffocated to death while plunging deeper into a level of weakness I could only describe in my journal then as “the vacuity,” I barely had the physical strength to drag myself around the wall my headboard flanked onto the bathroom floor, where I had to lie all day with my right knee flopping against the toilet bowl or my left hip almost touching the baseboard heater — in that dinky, narrow bathroom. Since my family was so inhumane they refused to get me enough care for toileting, either I had to stay by the toilet so I could occasionally muster the strength to lift my collapsed body up to use it, or die in my own shit in bed.

Each day, I counted the parquet tiles from my bed to the door across the room but could not get there, though three different times I managed to lunge toward the door and then paid dearly for that with horrific seizures, gasping for air, and prolonged terrifying trembling and crashing. It is uncommon but possible for severe ME/CFS patients to go into respiratory failure as I did, but numerous studies and anecdotal reports from Lyme doctors show that Lyme patients do die from respiratory failure. I could only lie next to that toilet every day, gasping for breath, having regular convulsions, staying as still as possible since even moving my arm to the side caused me to crash, repeating the word “fight” in my head all day long to try and push my lungs up to breathe. I could not speak out loud. I could not bathe. My family members all acknowledged in emails and notes that they knew I was dying, yet soon grew angry and annoyed about it. To this day, it winds me to speak much, though I have worked on increasing lung capacity for fifteen years. 

My situation was uniquely bad due to my secondary infections and particularly babesia duncani which can kill rapidly by acute respiratory distress syndrome (ARDS), cardiac complications, and death. The mechanism of how babesia duncani collapses the vascular system and invades the lungs causing ARDS is very similar to descriptions of early Covid deaths. When I read nurse and doctor accounts of those deaths in the first months of the pandemic, they sounded like exactly how I was dying in 2008-2009. My case had snowballed due to the infections but especially my 2007-acquired babesia duncani (WA-1) — the last of which was found in mice studies to cause “endothelial cell alterations, leading to pulmonary edema and acute respiratory failure.” This is almost exactly how Covid leads to acute respiratory distress syndrome (ARDS) also, as noted in this Lancet article from 2022 entitled, “Endothelial cells are major players in SARS-CoV-2-related acute respiratory distress syndrome.” Babesiosis also causes cardiac complications in humans that can lead to fatal outcomes, and in my case it compounded the pre-existing constrictive cardiac condition I had from bartonella. 

Penultimate Breaths

My inability to breathe grew more and more desperate, hitting a point by March 2009 (just before I was abandoned by everyone except my remaining PCAs) where I was retching, gasping, choking for oxygen. I was blacking out regularly from hypoxia, desperately trying to survive by huffing down whole oxygen tanks. Finally in late March right after an EKG done by paramedics in my bedroom showed I had Low Voltage QRS, a cardiac sign linked to seriously lethal conditions (like cardiac tamponade) that matched my symptoms, I had a chance at survival when I obtained injectable antibiotics that are typically administered intravenously but that I had to jam into my ass on a filthy bathroom floor while trying to maintain aseptic procedure and while barely able to roll to the side — I had gotten these a few days before the final stay by my mother, after which I was left with no care besides the few hours a day of PCAs. 

I then fought like hell then to get my noninvasive Bipap ventilator, which took over a month after I got the injectable meds. Then, it took many months after obtaining the BiPap before I could leave that room, and every minute of this was terrifying. Most days, I did not see a human face for 24 hours a day, so I endured all of this in total solitude.

People ask why doctors would not help me, as a severe ME/CFS patient, and why I couldn’t just return to the only hospital around with its ranting infectious disease doctor. The answer is obvious to most people with ME/CFS, MCS, or chronic Lyme. I had snapped a picture of myself in that hospital in December with the blood pressure monitor behind me, showing how low my bp was at 75/52 even with continuous IV fluids (this should have led to quick suspicion of sepsis), but sepsis should have also pushed past reasonable doubt due to my known infections, unrelenting tachycardia, low white blood cells, and low body temp — all indicating I was also trending toward septic shock, which has high fatality rates that increase by the hour of withheld treatment, and then collapses all other bodily systems as they are starved of oxygen. It’s frequently accompanied by acute respiratory distress syndrome (ARDS).

The Surviving Sepsis campaign recommends administering IV antibiotics within an hour of presumed sepsis, before death rates climb precipitously, but the angry infectious disease doctor instead threatened to take away even my oral antibiotics, treating my need for antimicrobials as drug-seeking behavior, and would not give me the IV line that three outside medical offices called to recommend for me along with more cardiac testing, and that the hospitalist has reassured me I would get. Instead, it took me six more years of struggle against red tape and Lyme ignorance to actually get the line because they’re typically placed in-hospital, until I had later bouts of repeated life-threatening symptoms including prolonged, precipitously low blood pressure in the 60s/40s in 2014. Once I finally got a PICC line (a central venous catheter) and IV antibiotics in 2015, my blood pressure finally stabilized as long as I stayed on them — though I had a severe recurrence of septic shock symptoms five years later when my intravenous antibiotics were suddenly cut off after I contracted likely Covid in early 2020, and this pushed me into new symptoms.

The infectious disease doctor was so opposed to the idea of chronic Lyme that he refused to believe I could have septic shock, stating to my face there was no way I had infections at all since my white blood cells and temperature were low not high (which are clinical signs of septic shock). To those who don’t believe this denial is possible, I suggest reading about the “Lyme Wars” which have been going on for decades now, between two primary camps of Lyme physicians, some of whom deny persistence of Lyme in tissue despite copious evidence it exists and requires prolonged antibiotic treatment, and some of whom treat via protocols that commit to treatment on the level of years.

In the only hospital I could reach (then and now) — a small-town operation that to this day averages 2.8 stars out of 5 on Google reviews (back then it was even lower) — that doctor was my one hope, and like many severe ME/CFS patients, I already knew that most medical providers would be grossly ignorant and patient-blaming. My past ME/CFS support groups had regularly discussed how to do a cautious reveal of ME/CFS in any hospital because almost inevitably, one is met with a deranged level of bias. Certainly, in 2008 this was true — the NIH, Mayo clinic, and other websites a doctor might consult said little then about the core symptoms of ME/CFS like postexertional malaise, orthostatic intolerance, and extreme sensitivities to sensory input, chemicals, and allergens — and they pushed doctors to consider ineffective and dangerous treatments like cognitive behavioral therapy and graded exercise therapy (CBT/GET) for ME/CFS patients. As I explained in We, Tuskegee, hospitals are extremely dangerous to ME/CFS and MCS patients and can cause prolonged or lifelong crashes, even death. 

So, the very day I left the hospital, knowing I would crash catastrophically and then I did, I begged everyone I knew via email missives sent from a tiny netbook to consider coming for any amount of time to be my caregiver, and kept hearing no. Ultimately, as my acupuncturist later put it, I “had no one,” and I was totally alone except for a few hours a day of PCAs plunking food at my bedside and then shuffling around preparing food and cleaning up downstairs, while I was in the bathroom.

By the beginning of May, Dad was arguing against my need to get the ventilator to breathe, saying finally he would pay one thousand dollars and that was it, but only after lecturing me about how he felt I really needed a psychiatrist and he wanted to talk about the great financial hardship my disabilities had been for him. The only reason I got the BiPap at all was due to my own desperate persistence and the efforts of my friend in Oakland to buy a used machine off of a respiratory therapist on a street corner, and FedEx it to me. And I would almost certainly be dead without it. I read about some Covid patients, early in the pandemic, saving their own lives with BiPaps or even CPAPs at home, but the noninvasive machines were not used in hospital settings since they can spew viral particles into the air. 

My family’s abuse in the form of near-fatal neglect was obliterating and came a hair’s breath from ending my life. To this day, fifteen years later, I am still gathering information about how few fucks my family gave right then about my survival. Someone just told me, for example, that despite claiming to everyone that that they were coming up with “a plan” that never materialized, my family was doing absolutely nothing to get me ongoing care, except for argue with each other about how none of them wanted to care for me themselves.

The message from my family members was abundantly clear then and now: they were bored with supporting my life. Our relationship was not just transactional to them but a transactional liability, a drain on their bank accounts. They no longer saw me as human.

No One is Coming

I read a horrific story about the residents who died in the 34-unit complex in Lahaina in the Maui fires on August 8, Hale Mahaolu Eono, which was built for people over 62, disabled people, and those with limited mobility. One of the residents had called the emergency number, where dispatchers would never flat-out say “no one is coming,” so the 911 operator just said, follow your instincts and leave if you think you should. That person fled and they lived; others stayed and died. Nobody would tell those terrified, older and disabled residents the truth, that no one was coming, even though many could not escape without assistance, and died there.

While a similar scenario has replayed in every recent natural disaster and in the global pandemic when generally those who are older or have limited mobility die in criminally high numbers, there is no feeling of terror like realizing no one is coming. 

It happened in slower-motion for me, but the red alert level was high the whole time from when I left the hospital in December of 2008 through most of 2009. I could only communicate by writing on notepads or typing on a small netbook, and one of the last notes I wrote my Mom when she briefly came out and initially refused to stay beyond four or five days at the end of March, 2009 was this, and I broke off the tips of several pens writing her that day, as I was so angry. “Who is coming here when you leave?” it says in my frantic, smeared script (possibly with tears that sometimes would run off of my face and threaten more gasping and heaving for breath). “Who is going to help me?” The answer, it turned out, was no one was coming. 

I managed to get her to stay a few days longer, via the threat of Adult Protective Services doing an investigation they never did do. My Dad had come out for two days only during those over-seven months, then refused to leave the hotel room until the 2nd day which was St. Patrick’s Day, and then he only spent about ten minutes at my bedside dropping off a dinner tray, and refused to stay overnight in my guest room so I could buzz him on a walkie talkie. My sister covered a few days in the early part of 2009.

For most of those seven months and particularly after early April, though, I truly had no one, as I had no local able-bodied friends and basically nothing in that tiny town where my house was surrounded by trees and I never had a chance at getting connected. Each of my family members heard pleas from long-distance sick friends who understood I was dying, or my acupuncturist who sat my Mom down and told her point-blank how dire my situation was, and was in shock when Mom just left. This is your fucking daughter! she exclaimed later about the shock, in an interview for my book. 

My family had seen my startling visage, and left me to almost certainly die next to a toilet. These are people who regularly support animal charities. But there I was, filthy and feral, my unwashed hair that always tangled as a child re-braided by me once a week or so because otherwise it would have formed large, dirty mats. My skin had grown leathery, my muscles had receded in front of my eyes because even tiny movements caused me to go into convulsions that would not stop, and gasp and heave for air until I blacked out. Each night, when I got back to my bed, I felt like I was being rolled off a steep cliff, and was stunned to wake up and still be alive.

For months on end, I expected to die any second and just tried to control my breathing so I would through a minute or an hour, while repeating “fight, Peggy, fight” in my head all day long to motivate myself to survive. I read printed articles on the qualities of people who survived the impossible (“remember: there is always something else to try” became my mantra of flexible survivalist thinking). I had Zen books stacked next to me in the bathroom that I would read between meditating to control my breath so that the awful, gasping, terrifying, wind-tunnel sounds wouldn’t come out of my throat.

Flat on a bath towel, with another towel wadded behind my head to prop me up on the tile, I had to lie perfectly still except for a hand sometimes carefully grabbing myriad objects crammed next to me, and it took what felt like hours to stop blacking out and having seizures from the exertion of three or four staggering steps to the bathroom floor.

My acupuncturist later told me that she had seen me stop breathing, and was just waiting for the call that I was dead.  Other friends long-distance were recording my funereal wishes.

The Ones Who Somehow Hang On

While I got some skeptical response for surviving all of this when I first posted the story fourteen years ago, I can only say that I barely got out alive, and the past fifteen years has been touch and go a lot too. The road to recovery has been long with a lot of switchbacks and scary drop-offs.

At some point several years ago, I read an article about a woman who was doused with gasoline by her abusive ex-boyfriend when he tried to burn her alive. She spent the next decade or so advocating for other victims while in constant, intractable pain, having surgeries, and repeatedly almost dying. She did die a decade or so later as a result of her injuries, and I read it and thought to myself, that sounds like me. 

Six or seven years ago, the sensation that I could die any day became less frequent. I had periods of terrifying relapse and prolonged septic shock symptoms over these past fifteen years, including after the bout of presumed Covid when my antibiotics were also yanked away in early 2020, and a lot of my slow gains were undone then with new symptoms cropping up. I have never returned to exactly where I was after the ice storm, but it took a long time for the threat of returning to feel a safe distance away.

The bedridden are especially vulnerable to fatal neglect and the absurd “choice” argument against their lives that insists they are choosing something like severe symptoms, dependence, or total immobility, which is almost always phrased the same way my family has used it. “You had choices,” my sister chastised me once I had no one in 2009. “What choices??” I implored her. She had no answer. The implication was that symptoms are laid out on a smorgasbord, and we all get to choose which ones or how severe.

In the disability community, killing a disabled relative is called filicide — and the perpetrators are most often family, who choose “fatal neglect” so often as a weapon that it is its own subcategory on the Disability Day of Mourning website, which documents these deaths. Murders of disabled adults by fatal neglect are, unfortunately, very common in all age groups. 

In the long list of filicides by fatal neglect last year are a couple that stood out to me, involving bedridden individuals: in Texas, bedridden 57-year old Patricia Martinez who suffered chronic illnesses included diabetes, was neglected so severely by her three adult children she had mold growing on her body, despite her adult children receiving training to care for her. In Indiana, 34-year old Jason Wilke who was mobility impaired with suffered developmental disabilities and had been bedridden for several years from a vehicular accident was neglected to death by his 71-year old mother who had been tasked with his care. Jason had bone-depth pressure sores that led to sepsis, and as covered in feces when he arrived at a hospital.

The case of Shannon Lloyd, 46, haunts me. In late October of 2020, while the pandemic obscured his death, this man in Racine, Wisconsin who had a TBI and injuries from a vehicular accident that left him dependent on his mother was murdered by her. Her mentality in the aftermath is typical but utterly grotesque, as described at the Disability Day of Mourning website:

“When he fell, she allegedly did not call for help; instead, she dragged him to the bathroom and waited for days. Concerned family members had been unable to reach him or his mother, and finally asked the police to do a welfare check. Shannon was found dead on his bathroom floor, and his mother was arrested. Police say that she said she didn’t want to take him to the hospital even though she knew he probably had broken bones, and wanted him to 'die a peaceful death.'”

The “dying a peaceful death” or “dignified death” line is used frequently by perpetrators of filicide. The Anti-Filicide Toolkit reports that this narrative and narratives of pitying the heroic caregiver and vilifying the care recipient are regularly reported in the media without critique. 

Racine, Wisconsin where Shannon Lloyd was murdered by fatal neglect on a bathroom floor is some three and a half hours from my hometown where my parents live (for some of the year now, as far as I know). In 2003, Dad reluctantly agreed to drive up to that same area to pick up the bouvier des flandres puppy (the hypoallergenic breed I knew I was not allergic to) I named Leroy from a breeder who temperament-tested bouviers for working dog roles including service dogs. Mom was going to keep the puppy for a year until he was old enough for service dog training — this was five years or so after she had adopted the heavy-shedding rescue she still had — and deliver him to Massachusetts to train with my friend who had become adept at service dog training and had worked with bouviers. This puppy was an envoy of peace, like China with the pandas. 

Maybe sixteen years after I had also been to that area of Wisconsin before I got sick -- on a super fun camping and cycling trip where we rode fifty miles along rails to trails -- I truly needed that dog to pull off my move to Massachusetts from RI in 2004, as he would be able to do things like run to a neighbor with a note in a backpack in an emergency, and bring me items in bed, or help put on my warmer socks and then brace me to get up and around. In this way, the service dog could have helped me get through the gaps in PCAs. I had created a fenced-in area, gotten automatic food and water dispensers, and installed a dog door activated by an infrared collar tag, so that I wouldn’t need much help for dog care.

Instead, Mom decided to keep the dog for herself, after an incident where Leroy’s frantic puppy energy resulted in him knocking her to the ground and causing an injury (before he was ever trained). My sense was that Mom had gotten attached to him, and I had to let it go, but nobody would talk about my service dog needs again. Dad went off on a rant that year, also, about how much it had inconvenienced him to make that trip to Wisconsin, as he had to leave my stepmom for an entire weekend (I have no idea why she didn’t go with him). He chastised me for my selfishness. Then several years later, when I needed to keep breathing, he chastised me for that too.

“Protection”

While it is a miracle I survived near-fatal neglect, I’m unlikely to ever recover to where I was before December of 2008, because of my combination of postexertional malaise (PEM) and sequelae from acute respiratory distress syndrome (ARSD) and septic shock, including the long-term prospect of recurrence. My life is extremely limited now, but I’m closer to the upper end of “severe” versus crossing over into “very severe” which is a critical distinction in ME/CFS. A small example of my losses is that I used to keep up with friends by talking on the phone regularly though it wiped me out, and now I can pull off 3–4 phone calls a year (beyond voicemails) and have to reserve those for medical appointments. There are a thousand other paper cuts like that, ways my life has become more limited. But I’m extremely fortunate to not be trapped in the greater hell that the sickest five percent of ME/CFS patients can exist in indefinitely, because I was there. 

Since disabled people are devalued and dehumanized, even Adult Protective Services usually won’t intervene in situations like what happened to me, and I would know, as six reports were filed to APS on my behalf (in 2009 and 2010), including one from me (here, it’s called the Disabled Persons Protection Commission, or DPPC). Five of the reports (four of which I did not know about until I sent out a freedom of information act request in 2016) were from PCAs who did stand up for me, and five consistently described my family’s abuse or mistreatment of me. But these were contradicted by one lying-ass report from my sister, who had hers recorded just to cast doubt on the others that were filed by me and three separate PCAs, in my case by using a TTY phone from bed at the beginning of April, 2009. My sister called them from Illinois hours before I could pull off my TTY call, to pre-empt me telling the story first since she knew I planned to call late that Monday morning. She acted like she was witnessing the events in my bedroom, which consisted of me begging my Mom not to leave until she at least found a replacement caregiver, which she refused to do. My sister attempted to make me look combative and crazy when literally the worst thing I did was damage my own pens angrily writing Mom that note begging for my life in the form of care continuation. I cried with absolute, doubled-over despair when I read my sister’s lies. When I cry like that now — which is rare because it messes me up — I’ll start heaving for oxygen again so I have to force myself to stop crying, as my lungs can’t handle it. 

The DPPC did absolutely nothing to help me, and did not even investigate, and I will never know how much my sister’s lying-ass report impacted that decision, but it confirmed the centrality of her role in my family's hate and violence. While at least two of the reports explicitly stated that I was imminently going to die of life-endangering neglect, the person I called on TTY phone told me they probably would not investigate since I did not have bedsores, even though I did not have the strength to turn myself over, and my sheets were never washed for over 7 months and literally filling with dirt and dead skin. I learned in my research that the DPPC investigates only a small percentage of calls, and serves as yet another agency to turn criminal activity against older or disabled adults into an administrative concern to unburden the police. Crimes against disabled people in Massachusetts are supposed to have elevated penalties, but if you call any Adult Protective Services to describe a crime, they will probably just file an administrative report that grows dusty. 

But They Do Know

My family at times treated me like the golden child, for most of my life. My sister wrote me in the early months of 2009 and told me I was an “angel” and did not deserve what I was going through, and seemed in that moment to be one of my strongest supporters. Then she did a vicious and inexplicable turnaround as I desperately pleaded for my life, and she filed that evil false report to DPPC. To one of my email pleas for caregiving around June of 2009, she responded with one angry word: “filed.”

My family’s growing vitriol toward me had just secretly and insidiously crept up into a dark ideology in the years before they decided I was better off dead, but most of their ableist comments were delivered with a spoonful of sugar, often test plays see how able-bodied people around me would react. Lundy Bancroft has detailed how abusive people will recruit allies, often aggressively and from one’s own circle of friends or associates, and how the resulting silence or turn coating of those friends and associates bolsters the abuser’s cause. People in the Midwest are way more confrontational than their friendly reputation suggests, but people everywhere often lack the sure-footedness or language around ableism and ableist violence to confront these, and silence is a common response, so I’m sure my family felt emboldened by other people’s muzzled reactions. Some of the allies of my family’s ableist beliefs and behaviors were also therapists.

As a tween, I had been dragged with my sister to family therapy to talk about my stepmom’s “jealousy issues” about Dad’s two daughters (we were sitting right there), and in early 2009 when I was slowly suffocating on the bathroom floor, my sister wrote me to tell me my stepmom was threatening to divorce him if he had anything more to do with “his family,” meaning my sister, her kids, and me. My parents’ codependent derangement — and my sister then moving home to Illinois in her 20s to enable it further as I grew too sick to ever get there again — just created a perfect level of vulnerability for high-control individuals to swoop in on them, and for me to be an exceedingly helpless target. 

My family is remorseless fifteen years later. My sister and father are in a sullen silence. My Mom refuses to talk about what happened. On the rare occasions they do communicate, they use rote language that sounds like it’s coming from a therapist’s template (I’m fairly sure it is). They absolutely sound like people in a cult, but who knows. Despite irreparably damaging my body and mind, their ghosting is a brutal reality over the holidays when I also celebrate my birthday each year the night before the most triggering date of the year, when the ice storm began. My sister’s fiancé (husband?) acted as their spokesperson and contacted me a few times, refusing to hear anything about my family’s abuse that led us to the estrangement, then repeating wispy and manipulative phrases like “Come home to us, Peg!” though my entire family knows I have been too sick to move or be moved the thousand miles to Illinois for almost a quarter of a century now, and that they implant that phrase in their allies as a provocation, a way of reminding me of my sister’s “You had choices!” bullshit.

The heartbreak these past fifteen years is difficult to describe. My Mom once told me I was her soulmate. My sister used to say I was her best friend. Dad used to marvel at our shared sense of humor. The man whose middle name was “Morning” on the airwaves, who won a prestigious national radio award called the Marconi Award and commanded the highest Nielson ratings nationally for a show with his audience share, never would have allowed dead air and now forces me to exist in it.

I last saw my father and sister in person in 2009. Mom came out to see me briefly in 2013, and it quickly turned dark and confrontational, thanks to her Sagittarian Daughter lobbing questions from an anti-gravity deck chair. I told her it would help if she would at least acknowledge what she did to me, since she never had admitted she nearly took my life. “I’ll do it now,” she declared then, and paused a second. “I almost took your life.”

I was shocked when she finally said it out loud, though her tone was expressionless, not touchy-feely or aware of the gravity of her words. Plus, I had to draw it out of her. Despite seeing her own father dead from suicide on a bathroom floor, she still held the line on this being a “dignified” death for me. 

Switching to a lighter tack, she started talking about growing up on the farm outside of Gibson City, about how rural living is not all its cracked up to be. Mom was bored as a child and especially as a teenager on the farm on a windy plain. It was hard work, and dirty, and when she was younger they only had an outhouse. Of course, Mom would never join the elite who could pay for a nanny or a real caregiver. But she and my Dad have done well for themselves, they have a great life and a good retirement. I have this horrible damage. 

She was looking out on the vista my current house faces, fifteen minutes from the place I nearly died but at a slightly lower altitude with not-quite-as-harsh winters. “My job as a child was gathering the eggs from the chickens,” she said then. “I hated it so much. Because of course they want to peck you to death, and try to! Of course they do, because you’re taking away their child!” We both laughed. I love that dark Midwest humor.

I thought we were getting somewhere though, my gut was starting to unclench. I still felt terrified of her and of all of them, due to the regular images that flashed in my head of my family’s cold faces when they heard me begging for my life and then decided that I would be better off dead than disabled. I kept thinking a white cargo van might pull up to my house, with thugs hired by Mom jumping out to kidnap me. After her admission that she and the family nearly killed me, and some implied allegory about chickens protecting their young and a little laughter, Mom actually instead asked me what I needed from her since she refused to move closer and give me caregiving. “A care fund,” I said, explaining what that would mean. She assured me she would discuss it with my Dad and they would do something this time. They never did.

There I was, counting my chickens again.

But her chicken story was not an allegory or a statement on how a mother should act, at all. Those were just chickens, hocked up on a maternal protectiveness and fury my mother had tamped down in herself, a raw neurology. Chickens — like humans — have a lateralized (a right and left) brain, and are said to be social, emotional, to be on par in many ways with mammals. But otherwise, they’re not us. And nobody knows for sure if their right brain’s emotion battles their left brain’s logic, or vice versa.

It was simple, her job with the eggs. Grandma used eggs to make breakfast every day. Grandpa ate his eggs and biscuits and then drew grids over the almost-unearthly flatness with a tractor or a combine. The whole energy there was comfort food. It was Zen. Grandpa had trained Mom in nonattachment, in how to reap and sow. He trained her how do the things a farm child has to do. So, I had to, said Mom. I had to get the eggs and deal with getting pecked half to death. And it really hurt!

The next day, she tried to recant what she’d said about almost killing me, taking life, as I lay on my daybed and she was reminded of my fragility. She hated how the family’s destruction was painted on my limp flesh, how the wind was knocked out of me from nothing at all. I reminded her again of what she had said, how she knew what she did to me. Who abused you as a child to make you like this? I finally asked, and her face went ashen. Why are you like this? She turned her head to the side, to remind herself how close the doorway was. 

When she finally spoke, she flipped to a scripted intervention mode as my sister had done. The egg itself would break, right, if you poked or pecked it instead of squeezing it in your fist? Mom had to iron-fist this, to contain me with her quiet force. 

There is nothing I can say to that, she answered with finality, then left my house with crisp expediency. 

I have not seen my Mom in ten years.