Written July 7, 2020
CW swearing and sarcasm, opinions about Covid decision making
Ohio has turned into a 5th grade pandemic classroom.
To my right is the kid who supplies the entire school with Mad Magazine, Playboy, and cigs. He wants the class to know that people die everyday from car crashes, smoking, and drinking. Just last week he crashed his bike into a whole mess of kids and infected all of them with his budding addiction and cognitive dissonance. From there his idiocy spread like wildfire. There’s no vaccine. And even if there were, he won’t take it.
To my left is the kid who explains that death is good for the economy. He knows people who died of Covid or who are living with organ damage from it, but it’s mostly their fault for getting it to begin with.
Way in the back is the kid who’s figured out that the bare minimum one must say in public and on social media is that one is pro mask. If one says that then maybe one can go ahead and enjoy cover when one explains how this virus is still a hoax.
Next to that kid is the kid who doesn’t give a fuck and absolutely loves that we have a president who is an extraordinarily horrible human being. She doesn’t actually watch the president speak or really read the news, but she’s enjoying herself.
At the front left of the room is an assault weapons wielding fiend who thinks that it’s a great tactic to intimidate public officials with, you know, weapons. He spends lunch and recess telling people the accurate terms for all of the parts of assault weapons. All his best conversations have happened at gun point in public.
Right behind that kid is a kid who just wants everyone to get along and thinks the world is a real shame and social media is a bully. If you ask her a question or confront her she’ll tell you to enhance your calm. She’s mostly unaware how our government functions which is fine because politics are mean. She votes however she was raised to vote. No matter what.
Next to the window is the kid who thinks that the greatest strength of capitalism is that no matter what it’ll never run out of other people’s labor. He needs meat. So fuck those workers.
He’s best friends with the kid behind him who’s parents for real will not vote for Joe Biden until Joe personally tells his parents that they’re right about everything. His parents also think critical infrastructure should fucking turn a profit so fuck the post office. His parents have no idea that Republican-controlled House and Senate and President George W. Bush manufactured a crisis for the postal service in 2006. No clue they required the USPS to prefund its future healthcare benefit payments to retirees for the next 75 ridiculous years. No clue the PO was required to divert more than $5 billion annually to prepay the health benefits of retirees who have not yet been hired. Down with stamps.
At the end of this row is a kid explaining how his freedom is under tyrannical attack. He’ll see you later at his vector, I mean church.
His BFF is a kid whose best ability is his ability to exist in a world made fresh each day with no collective memory of what the president said the previous day. He does not do Twitter and sees no reason to consider any of the 50,000 tweets the president has vomited up as actual words to consider at all. He’ll only consume heavily edited Fox News videos of the president. He has a velvet picture of Elvis and Sean Hannity on his bedroom wall. And an autographed pic of Rush on his night stand. Fuck Kaepernick. And Greta.
If you look along the back of the room you’ll see the gang of people unconcerned with per capita testing or testing at all. They say Taiwan is doing well with the virus hoax because of Confucianism. When someone explains to them that Taiwan is doing well because their Vice President is an epidemiologist with previous experience with SARS and they have a strong public health sector with an emergency command center they all chorus, “Libtard.” Except that one kid who just “lols” because he’s not that smart and he’s worried someone might ask him something he can’t answer.
Then there’s the kid whose utterly convinced the world is a worse place because she’s learning about an injustice. She’ll give you selected topics you’re allowed to discuss. But not respond.
Confused by things that cannot be turned off, put away, declared a hoax, or shot, the kid who sits behind me and over one seat has apparently been trained to expect instant gratification at all times and since pandemics are long, and boring and horrifically tragic and the benefits of interventions aren’t immediately obvious in real time, it must mean that nothing is working, it’s the deep state, and she doesn’t WANNA do it anymore. Bless her heart.
Her best friend sits next her. She’s against statistics. And vaccinations. Her FB page says, “Nothing is ever knowable definitively. Down with the Scientific Method.” Have a blessed day.
The kid on her left spends all day doodling tattoos on her desk, arms, and hands. “Let natural selection sort it out,” is today’s doodle. She’ll see you later. She has to go pick up her dad’s rheumatoid arthritis prescription and her little sister’s heart medication.
She hangs with the kid who believes there is one operational definition of liberty and part of that definition is forcing other people to comply with her demands and act like everything is normal no matter what. She posts about how the constitution is a document for her to consume personally and to apply to her personal set of circumstances. Her personal set of circumstances are that she does not want to wear a mask. And she really wants to be angry about that. Also her boyfriend hates government. He thinks a national response to a national problem is stupid as fuck. He’s super fucking pissed he has no bleach. He wants you to watch Plandemic.
Sitting by the wall over there is the kid who loves false choices and shuns nuance. He hears your questions, but his default setting response bares zero relation to what you say. He employs the worst of all bad-faith assumptions in assuming that those of us obeying our state's restrictions and supporting the making of science-based policy are enjoying this shit show and don't care how long it goes on. He’s a vocal trump supporter, but also not registered to vote. Cuz voting is stupid.
Hanging in the hallway during class cuz learning is dumb as hell is the loudest group of kids. They think you get less economic damage by letting the virus spread. They demonize what they can’t understand, especially anything related to science. They think hospitals are enough of a solution. Hospitals that many times are working with inadequate PPE and lack of testing materials. They’re okay if you die at your shitty job so that other people can have minimal interruptions in their lifestyles-it's the right thing to do. They think using the DPA to supply this country with all the supplies Covid testing requires, with N95s, and bleach is insane. They just can’t wait for things to go back to the way they were. And they’ll pray for you.
Written on July 15, 2020
This is Hard, This is Fragile
This is hard, like my diamonds
chipped at strange angles
caved in on themselves
etched loud with love
resilient against the noise
of approaching black holes
but fortified with forces
bold enough to change the course
of waves and always hoping
to make long things shorter
leaving to time to leap rather than to fall.
This is fragile, like my diamonds
loose gravel all around slippery edges
reality shifting with the stuff in
gravity wells marking us deeply
so we assessed damage at times
on the way down
and I used to fucking worry
about the landing but some surfaces
never regain their composure
after a fall like that. This is hard
in a world that duplicates and takes
everything along for the ride.
My 'I' at one moment derives
from your 'you' of the previous moment.
In self locating uncertainty
I hover and no one sees me but you
spinning up or down with nonzero
strangeness. By the time anyone
notices us at all the wave has collapsed. And then the surface really has calmed.
There’s just the observation, then,
that this is hard
and this is fragile
exactly at the same time.
*Pic is of my 25 year old wedding ring. We replaced it because it wasn’t really something we could renovate. It’s seen over this thing we’ve been doing, Dennis and I, for longer than 25 years now. It occurred to me that the remnants of everything my hands have touched or done are all over this ring and it shows. Happy Anniversary, Really Tall Guy.
CW chronic disability/illness
Written March 31 2020
In the morning my broken parts come for me before I’ve had a chance to form sentences, to make muscles into memory, and to forge steel for my backbone. There is no easy way to hold space through these wordless moments. They stretch out forever right up to the border of me.
This morning I ready my medication and use some left over Fiona Apple for strength. I glance at my phone as my stiff fingers and slow wrists spill powdered medications and pills all over the kitchen cutting board, onto the floor, and into the cuffs of my pajamas. My borders are easily breeched.
I look at my dinging phone notifications with today’s memory on my Google pic app, where my heart is held lightly, where my days leave tracks across my time, where my children are yesterday, and where my tendency to not delete digital content isn’t even remotely intimidated by threats of full storage.
My fingers pick up dozens of pills, pink, peach, red, striped, all stuffed with life giving forces. I wipe up fiber. My amygdala argues some lies with me. My fatigue begs for more air time and my hips fairly scream as they bear my weight. I think it must be my photo app that steadies me, my hands, my legs, and my heart. I wonder at the power of it. It offers nothing really, just a few images, a couple whispered moments in passing as I hurtle onward through my existence.
There is no easy way to hold space through these wordless moments. They stretch out forever right up to the border of me. All the way through my breathing, deep into my most valuable heart beats, all along the floorboards where the pills hide and the powder is gritty and irretrievable, where days of stale crumbs and dried up shredded cheese remind me of how many months it’s been since I could cook or sweep, where lack of sleep has changed me, and where stretched out in both directions as far as my will could possibly reach, are these pieces and parts of me that are at their most vulnerable when they try to exist in the real world. I scatter easily. I am full of words that I cannot take back.
I gather me up and I hold me.
In the morning my broken parts come for me before I’ve had a chance to form sentences, to make muscles into memory, and to forge steel for my backbone. But now, this morning, I’m holding some raw material for forging. For when I’m ready. What happens at that forging will depend on who I am when I get there.
*pic is of my dog, Luna, hiding from life
The Captain of All These Men of Death or Why You Aren't Infected With Mycobacterium Tuberculosis
In 1992-1993 I was treated for tuberculosis. Tuberculosis is caused by the bacteria, Mycobacterium Tuberculosis. You aren’t infected with the Great White Plague in the United States of America because TB control in the United States is a success story. It’s a success story that highlights the importance of public education and of funding promising research. The story of people taking action to stop the spread of TB is long and it started a long time ago in 1904 when Dr. Edward Livingston Trudeau founded the National Association for the Study and Prevention of Tuberculosis. He realized the treating and funding disease prevention means understanding how interconnected our world is. Although the disease is largely controlled in the United States, it remains a tremendous problem worldwide.
On March 24, 1882, Dr. Robert Koch announced the discovery of Mycobacterium tuberculosis, the bacteria that causes Tuberculosis (TB). During this time, TB killed one of out of every seven people living in the United States and Europe. TB was known as the Great White Plague due to the paleness of the patients infected with TB. You might know TB as Consumption. It was also frequently known as “Captain of all these men of death.” Today, our names for TB tell us where TB is located, pulmonary or extrapulmonary. Our names also tell us how to treat it, drug susceptible, drug-resistant, multi-drug resistant, and extensively drug-resistant.
I lived in south Florida during the Tuberculosis (TB) outbreak of the early 1990s. The incidence of TB in the Unites States was steadily increasing in the late 1980s. Florida ranked fourth in the nation with 1,707 tuberculosis case reported in 1992 for a rate of 12.7 per 1000,000 population. The Florida Department of Health and Rehabilitative Services in collaboration with allied agencies utilized several initiatives in their response to the outbreak. There were latent TB infections (LTBI) driving new case infections as well clusters of multidrug-resistant TB (MDR-TB) in the state of Florida at the time. Identifying and treating people with LTBI is an important public health measure since it not only prevents active TB from developing in LTBI infections, but it also prevents the interpersonal spread of the disease. These MDR-TB strains of TB were resistant to Isoniazid, Rifampin, and Fluoroquinolones. Those are our big gun antibiotics that we use to save lives. The goal of treatment is to keep resistant strains of TB from establishing here in the United States.
TB is spread from person to person through the air. If an infected person coughs, speaks, or sings, then the bacteria is expelled into the air. The bacteria settle in the lungs of people who breathe in the bacteria. Once inside the person’s lungs, the bacteria begin to grow. From there the bacteria can move to other parts of the body. It usually affects the lungs, but it can also affect other parts of the body such as the brain, the kidneys, or the spine. The hallmark of a fully established TB infection is thick and bloody discharge from the lungs.
Not everyone who is infected with TB bacteria becomes ill upon infection. When a body keeps the growth of the TB bacteria somewhat in check for a while, we call this Latent Tuberculosis Infection (LTBI). Sometimes TB bacteria can overcome the defenses of the immune system and begin to multiply making a person sick after infection has occurred. Sometimes this happens relatively quickly, sometimes it occurs years after infection, or sometimes this happens later in life or during a time when the immune system is weak.
When I moved from South Florida, where I was working for The American Swim Coaches Association (ASCA) to Cleveland Ohio in 1993, I was hired for a job with MetroHealth Hospital in their family planning counseling and HIV counseling/outreach program that was funded through several public health grants. I underwent an extensive physical that included TB testing and titer testing for other diseases for which I had been vaccinated. One of the results from my physical was a very positive Mantoux test, also known as a PPD test or TB skin test. The test was repeated. It was still very positive.
A positive Mantoux test is indication of two things: latent TB infection (LTBI) or active TB infection. I had been exposed to a person who had the TB bacteria and I was infected with it. My doctors did several things at this point. They sent me for a chest X-ray, and a sputum sample test. When they realized I had been living in South Florida for a year and a half, they referred me to the Ohio Department of Health for extensive risk assessment, contact tracing and testing/treatment monitoring. The goal of TB and LTBI testing and risk assessment is to identify people who are at increased risk for developing TB and who would benefit from treatment of the infection.
I delayed the start of my job while the Ohio Department of Health worked with the Florida Department of Health and completed contact tracing efforts in South Florida. Back then, this took quite awhile because there was no internet and no really easy ways to communicate rapidly. Using my daily planner (which was on paper back then), I listed all of the places I had been in South Florida. I was in my early twenties then, so I had been plenty of public places. After extensive investigation, hundreds of phone calls, it was clear that I had been several places where there was an increase in active TB infections and I had been several places where the Florida Department of Health was tracking folks who had not been compliant in treating their active TB cases.
Because of the resurgence of TB in the United States in 1987, the Advisory Committee for the Elimination of Tuberculosis recommended strengthening of TB surveillance to improve monitoring and to assist in targeting groups at risk for disease. I was really at risk for disease given where I had been, who I had been exposed to, and the level of compliance of these individuals in their TB treatment regimens.
In addition, because of outbreaks of nosocomial (hospital acquired infections) multi-drug resistant TB (MDR-TB) in New York and Florida during 1990-1992, the National MDR TB Task Force recommended that drug-susceptibility testing be performed on all initial and final Mycobacterium tuberculosis isolates from each TB patient and that the results be reported to the CDC. In January of 1993, in conjunction with state and local health departments, the CDC implemented an expanded surveillance system for TB. Following the resurgence of TB in 1985 and the recognition of nosocomial (hospital acquired infections) outbreaks of MDR-TB in 1991 the Public Health Service increased funding to state and local health departments for TB prevention and TB control activities including directly observed therapy (DOT). DOT means that you meet with a healthcare worker every day or several times a week so side effects of medication and health problems can be dealt with quickly. Also, they ensure compliance of medication regimen.
Lastly, because of my compliance with the Ohio Department of Health and the Florida Department of Health we had a ton of very specific information about me, the status of my TB infection, and the people I had been around. The daycare workers I had worked with upon arriving in Ohio and the babies and toddlers I cared for during my time as a daycare worker had a chance to protect their own health appropriately. For this, I am eternally grateful.
Because of the requirements of my public health job, because of the actions of my doctors, because of the cooperation between the Ohio Department of Public Health and the Florida Department of Public Health, and because of the requirements of the Advisory Committee for the Elimination of Tuberculosis and the CDC, I recovered. It was a ginormous pain in my ass, but I recovered and I did not infect anyone from that point on because my infection was identified and treated properly.
Some of my life was delayed because of this infection and the treatment. I was on a regimen of several antibiotics for twelve months. There were side effects to be managed. I had to stop wearing contacts because my bodily fluids turned orange (side effect of the meds). My clothes were pretty easily stained as well when I exercised. I didn’t have much in the way of money at the time for replacing ruined clothes. I had to stop taking oral contraceptives (OCs) that were treating my painful ovarian cysts and what would be diagnosed as Stage 4 endometriosis two years later. I had several ovarian cysts that ruptured that year because I was unable to take OCs. I missed a lot of work because of this and suffered quite a bit as well. I had to start using a diaphragm for birth control, which caused a series of other problems that needed coping with. Luckily, I had health insurance coverage for the first time in my life through my job and I could finally get consistent and reliable treatment for these issues. I couldn’t drink any alcohol for a year and I had to have my weight, hepatic enzymes monitored frequently. I participated in DOT for a year and I don’t regret one minute of it.
There was a substantial decrease in the number of reported TB cases from 1992 to 1993 reflecting the effectiveness of prevention and control measures implemented during the 1989-1993 time period when the United States Public Health Services realized the threat from TB nosocomial infection and drug resistant infection that overlapped with the HIV outbreaks at the time in New York and Florida and California. Most states during that time period required that laboratories notify the health department about patients with cultures positive for M. tuberculosis. In response to an initial report, local health departments conducted investigations to verify diagnosis of TB and to collect information needed for completion of reporting. In 1993 79% of all reported TB cases were culture positive for M. tuberculosis. Public health intervention was absolutely effective at containing the outbreaks during that time period.
We shouldn’t fool ourselves into mistaking the world as we think we are experiencing it for the world as it really is. The two are related, but the relationship is complicated and its real work to figure it out. Fear is not part of that process. Fear is not a decent response to the world and the diseases that live in it. Any fear that comes upon you sudden enough will unfit you for thinking straight. Embracing bootstrapping or stark individualism wrapped in disconnected pseudoscience is also not an effective intervention for disease management.
I think its’s tragic how so many people embrace the notion that the biological world, the physical world isn’t an interconnected whole, while tiny bits of trees that were burned up a continent away lodge in their airways and a virus variant born on the other side of an ocean changes everything from their national economy to their personal health.
All of this happens while photons from a star 93 million miles away, captured by plants, animates the computer inside their heads to reject evidence of interconnection.
All of this happens while people first deny any mistakes, disasters, and even pandemics that descend upon them. When denial is no longer possible, then the mistake or disaster or the pandemic is assigned a source. I say source because usually the source is nothing of the kind.
Its just blame and blame is a form of make believe. I knew that even when I was very little. People who believe that the world is a disconnected mess and who take these ideas personally enough, will interview and air their grievances in excruciating detail, humiliating detail, spinning the narrative to create blame where none exists. To acknowledge this pandemic, to acknowledge the sickness, to acknowledge the tragedy of long Covid, to acknowledge death means that we must take another shape. We must acknowledge that we are interconnected.
*The photo of the painting is called Sick Child by Edward Munch. It draws upon Munch's memory of his sister Sophie's death from tuberculosis at the age of fifteen. The model was a young girl who Much had observed sitting distraught when he accompanied his father, a doctor, to treat her brother's broken leg. Munch worked on the painting for a year, developing the rapid brushwork and vivid color that suggest the painful memory of his sister's death. He made several versions over a period of about forty years. This was his fourth version.
Written on New Year's Eve 2020
Fuck You, 2020
Fuck you for turning hardships into armed missiles.
Fuck you and the people who find this pandemic neither comprehensible nor fixable.
Fuck you for obliterating linear time.
Fuck you, 2020, since you actually started this year with Covid inside of our borders, but all the airwaves were carrying was the impeachment. You were here, you bastard. There were articles in foreign and domestic papers.
Fuck the deniers.
Fuck the people in 2020 who expected others to ascribe to the idea that everything happens for reasons that are not ours to know, but especially fuck those of you who won’t mask or vaccinate.
Fuck discourse rooted in platitude.
Fuck the little holiday get-togethers.
Fuck the tension between primal reaction and public health decorum.
And fuck that guy who sneezed on me in April in Heinens. Turns out 2020 showed us how many of you there are. Fuck all of you.
Fuck you, 2020, for being a dead thing that so many are trying to keep alive while our federal government is burning up with misinformation and malevolence.
Fuck that dude who was too scared to stick the swab all of the way up into my sinus cavity for my Covid test. Geezus, sir. Get it together.
Fuck you, 2020, and all the people who stayed around a bad man too long. Seriously, fuck all the way off forever.
Fuck you, 2020, for so harshly pointing out that there are few catastrophes, in our own lives or in those of nations, that do not ultimately have their origins in emotional ignorance.
Fuck you, 2020, for being so full of crucial information, the kind that is frequently lodged in our minds without being active in them, and fuck anyone who both understands what we should do and then resolutely refuses to do it.
However, a big fucking thank you, 2020, for showing me what happens when words fail. And thank you for pointing out to me everyone who couldn’t be bothered and for showing me who’s willing to be cavalier with my life.
Now, fuck off forever into the next universe.
Written May 22, 2020
We were out on Lake Erie all day yesterday fishing and playing and breathing in the air, which even a 1000 meters from shore was thick with the sweet scent of blossoms.
The Passing of Ghosts
I can’t remember the last time
the savage thaw fell out of my mouth
and little white hot balls of Sol
bled from my freezing fingertips
the cold muttering of Winter undone,
always much more than the carving
left behind by the dirty melt,
sleety runoff and exacting ghosts
with more stamina than I.
Spring needs immense energy having
suffered from such cold neglect,
having forgotten it’s sturdiness
that Winter often lacks
scentless and remote, it strides
heedlessly past my hibernating
specters begging for release.
In Winter dying is the only way out
and every departure is layered
in self knowledge and will
reducing me to essential elements.
I hold these spirits, gaze into their eyes,
abandon perspective, intoxicated and
heady from blossom scent
1000 meters off shore
an unseen thing bounding
across my lake. My arms held high
eyes closed to the murmuring
of Winter borne, in this way I am
able to feel the passing of ghosts.
Spring is a supremely jealous thing.
Pic is Starve Island, Lake Erie. It’s locally known as Death Reef since it will kill your boat dead if you happen upon it during a moment of inattention or if you forget to inquire about local charts
Protect Your Circle
The attached picture is of a painting, Protect Your Circle, done by the artist (and my cousin), Deborah Hance Wage. She painted it during the Spring of 2020 when Covid was raging, no one knew much of anything, authorities were saying stupid and contagious things, and my husband was quarantined behind closed doors while his lungs crackled and his blood oxygen hovered around 88% for 14 days. When Protect Your Circle went up for sale on Deb’s website, I knew I had to have it.
I am especially sensitive to our circles being undervalued or being compromised from within or from without. So many hazardous uncertainties swirl around us on a daily basis, but especially during these last two years we all have been tested. There’s the constant negotiation with other souls, the fear of failure, the obliteration of future plans, the distrust of others, the pain of physical struggle and emotional loss, the loneliness we have learned to live with or blamed on other people.
I come home to my circle that secures me halfway between here and there, a stopping place where I do not perform to earn love, a holding place where weakness is a matter of context until it gets to be about logistics and then I am lifted up and away from my weakness.
I come home to the place where I extended my arms around my children until their breaths synched with mine, until they were calmed and settled with their bodies surrounded by the protective circle of my own body.
I come home to the place where we felt our children’s need to be simultaneously challenged and protected, where they tested all of their gorgeous strengths and serious weaknesses without questioning whether we could contain them, without fear that our boundaries were not secure, without questioning that we could be the two people in this world to whom they could give a glimpse of the intensity of their needs.
I come home to the place where our kids found method upon method to test the boundaries of our circle, to see how far it extended, to discover how well it would hold, to see where we began and they ended.
There’s a myth that this kind of connection, this kind of circle is DNA based or biological. While it is rooted in the body, it’s not DNA. It’s physiological. Circles of protection are physiological emerging from the delicate dance that we have performed even on days when our circle was open and gaping and we were raw and selfish and unseeing. The circle folds itself around the continuous mental adjustments of our actions and our intentions the same way that my son learned to use a really sharp knife with me holding a hand in his, directing the blade safely, surrounded by the protective circle of our bodies pressed together providing moment to moment feedback; the same way he is learning that the best way to overcome challenging circumstances, distrust, and deep pain is by taking small tangible steps bolstered by connection.
We make our own circles because the world operates without any rules and in the telling of the stories of the world there can’t be any rules. Stories have got to go where they need to go. This isn’t always where I’d want them to go, but this is us in the circles we make. We step outside of our circles, we come, we go, and we come back again, but this is only because our circles secure us halfway between here and there.
We are surrounded by a barrage of words and events that don’t seem to have any meaning on their own, but anything shaped by human hands and inspired by the human heart has a purpose and in a very real way this purpose is the meaning. We make our own circles of protection.
Protect your circle. And visit Deb's website for other inspired works of art. www.deborahwage.com
The Black Bag originally appeared in The Blue Nib in April of 2020.
Written in March of 2020 during the beginning of the Covid 19 pandemic. My husband was Covid positive and quarantined at home for 14 days with an unrelenting fever of 103, a blood oxygen level hovering around 88%, and lungs that crackled like they were turning to something hard and crispy.
The Black Bag
During the big Northeast blackout of 2003, I held my BlackBerry in my hand staring at it like it held all of the answers to everything. This was just post 9/11 and my mind was reeling. My calls to Dennis weren’t going through. No one’s calls were going anywhere. His law office was in downtown Cleveland at the time, 40 minutes from the suburb of Hudson, Ohio where we lived. Much larger than the Northeast Blackout of 1965, in America alone, this blackout affected 45 million people in 8 states. Everyone was instantly cut off. No one knew what was happening.
A software bug at FirstEnergy Corporation in Ohio caused this power outage. When overloaded transmission lines hit untrimmed trees, the alarm didn’t sound to warn maintenance workers. It was a manageable issue that spiraled into a massive problem for the electric grid. Phone services were strained due to the overload in calls. Detroit lost water pressure and was under a water boiling advisory for 4 days after power was restored. Cleveland and New York saw sewage water spill into waterways, forcing many beach closures. Our grand systems built to sustain us are fragile because we are imperfect.
That was the age of dial up. Reader Rabbit CDs. Netflix delivered DVDs to my mailbox that either offered blissfully instant entertainment and unbridled joy for my kids or scratched DVDs that wouldn’t play and my fervent wish that DVDs had never been invented. I didn’t even know I needed to back up my Blackberry back then because I didn’t know what back up even meant. I didn’t get what I Tunes was and I didn’t care. I was wholly unimpressed with our plasma TV. If it broadcasted some content, I was fine with it no matter what I watched the content on. I wasn’t even entirely sure what a browser was. Browsers had nothing to do with autism or cyclic vomiting syndrome or dyslexia or executive functioning skills or Stage 4 Endometriosis. I was deeply involved in homeschooling and caring for my kids and for myself. Those were the issues central to my life. Technology was mostly just white noise to me in 2003. I didn’t even own a portable radio. Only people who lived through the depression had radios and re-used foil. Only old people thought general preparedness for emergencies or for lean times was prudent.
It was only months after the birth of Eamon in 2001 that I committed my first act of preparedness. He was born with severe reflux that morphed into GERD. Eventually a diagnosis of Cyclic Vomiting Syndrome was added soon after his fifth birthday. His health was fragile.
I kept a Black Bag parked next to the kitchen door in case one of us needed to go to the ER. It held everything I needed to care for myself and Eamon if he needed to go to the ER or be admitted. It was the only thing I had control over in situations that were mostly out of my control. That it rested eternally by the garage door in our kitchen was a constant source of comfort to me and helped me to not feel irreparably vulnerable.
Even after several years of deeply present living, I was a slow learner regarding what to prepare for though. One day about 7 days into a viral illness, Eamon’s status changed rapidly. I had failed to persuade an on-call doctor that Eamon needed to be admitted immediately and instead let myself be convinced of a 6-hour waiting period at home before going to admission. He had been vomiting for far too long. By the time I left for the hospital with Eamon strapped in his car seat he was vomiting blood into a bowl. I had to stop for gas because my car was nearly empty. There was nothing in my Black Bag to help me through that. My car doesn’t go lower than half a tank now. Even that makes me anxious.
The time Dennis was gone in Florida for 9 weeks for a trial I experienced for the first time what it was to be incapable of caring for myself and my kids who were 11 years old and 6 years old at the time. Brogan had twisted his ankle after slipping on some crayons that were on the floor and he damaged the growth plate in his ankle. It was purple and swollen and he couldn’t even stand. On top of that both Brogan and Eamon both had a virus with a high temperatures and fever for 8 days. Everyone was so sick. The only way to care of them since Brogan couldn’t even get to the bathroom by himself was to pull mattresses downstairs to the family room for sleeping together. When the power went out for two days it was a good thing the mattresses were already on the family room floor in front of the fireplace. It was a bad thing that I was nearly out of any food that was usable without power. When a migraine settled in with me like it was my new best friend and oral medications wouldn’t stay down and I couldn’t stand up, I sent Brogan crawling up the stairs with the one functioning flashlight we had to the medicine closet for Tylenol suppositories. We had two left. Luckily, they were on a lower shelf so he could reach them.
That was the moment I vowed never to be wholly unprepared again. I promised myself I’d make sure my kids always understood that preparedness was a way of life. That was back before I knew that kids come with their own agendas but I persisted nonetheless. We have one kid who plans for nearly every contingency and takes the safely conservative route ahead of time by wherever possible being informed and armed with information on all possible scenarios. If I put him in charge of anything, I’ll get a bulleted report of ranked choices for all possible actions to be considered with commentary and footnotes. And then there’s my other kid who surveys most situations for about two seconds, says, fuck it, I’m going in, then quickly mounts an excavation into the middle of whatever situation is unfolding. A planner and a pouncer.
Now, on this day, while we wait for Dennis’s Covid test results, I’m uprooted. Floating. Ready. And yet unready. For more than a decade I lived permanently planted in the present. One day at a time. One family incident or struggle or joyful pursuit or fight for improvement or crisis or transition or surgery at a time. There were dozens and dozens of times I was isolated at home for weeks on end only leaving when hired help came to take over so I could go to the doctor or the pharmacy or take one kid to OT or PT or for medical follow ups. Occasionally I went to get my hair cut and afterwards I would sit by myself in the car alone with my thoughts. That was enough for a re-charge. It’s not the isolation that consumes me. It’s not the slog. It’s not that we’re in a distance race with no ending in sight. It’s that the path is not marked at all.
I couldn’t get ahead of myself in an autism diagnosis. The present held too much to attend to. Autism paths have been well traveled by folks who willingly guided me. I couldn’t end a cycle of nausea and vomiting by projecting onto it anxiety and concern. Only calm planning, empathy, a treatment plan, and endless patience will end an episode. I couldn’t expect Dennis to understand where I was in the care of myself and our family if I didn’t even know what kind of crisis I was in at any given moment. These were the hardest times. Now we finally fit together. The two of us. Dennis and I. We can snap together at a moment’s notice and during the times when we don’t, we know it. I am not one anymore. We are two.
Today I stare at my phone fully aware that people who should have known missed the warning signs that my family saw in January regarding this virus. The alarm sounded for us here in this house. We prepared. There are huge gaps in precious supply lines. People in charge who should not be. Lies and temper tantrums on live TV every day. We’ve been flashing red for a while now here in the United States.
I stare at my phone knowing that it doesn’t hold the answers to everything. I know that if he has to go, if Dennis needs care from a hospital, my Black Bag placed carefully in my closet will do exactly nothing to help him and I tell myself that we are used to things that don’t have an end in sight. I tell myself we are not instantly cut off from another. We are connected. We are connected through this.
I text my husband to see if he’s ready for more Tylenol. I want to know what his temperature is. He’s had a high fever for 11 days. It’s been unrelenting. The false negatives on coronavirus tests abound here. No one is sure what they are doing. People have started to believe only in things that will help them. Everything else is superfluous and unreal. I place the meds and a snack outside of the door of his bedroom and retreat downstairs.
“I love you all the words,” I text. “I know. Me too,” he responds. Then I stare at my phone some more looking for answers.
Snowstorm or Blizzard
Everyone in the blinding whiteness has to convince themselves they are safer than they actually are.
Our youngest son was a skier. When he was 11, he went with a teammate to Marquette, Michigan to complete mandatory training before three days of downhill ski racing. I was late in joining him because I was taking care of our oldest son who was ill with a bad virus. Eventually I set out for the upper peninsula (UP) at three in the afternoon just a day before his ski competition was to begin.
Just past Gitche Gume RV park in the upper peninsula, Route 28 runs very close to and right alongside the waters of Lake Superior. The lake is god there. In late January of 2011 at three in the morning, somewhere along this stretch of Route 28, there was a twelve-foot plowed and compacted wall of snow towering over the left side of the road and on the right side of the road was the fury of Lake Superior roaring herself absolutely hoarse. I couldn’t see the lake in the darkness and snow, but I knew it was just a hundred yards to my right because I could see it in my GPS.
Visibility had decreased to zero.
I had stopped 45 minutes earlier at a gas station for caffeine. There was a whole chart hanging next to the computer screen detailing the wind speeds and duration of conditions for determining snowstorm conditions versus blizzard conditions. Route 28 had been listed as ‘open and in intermittent snowstorm conditions’ on the upper peninsula weather screen in the gas station.
In the real world however, everything was ice and wind and loneliness along Route 28. My Toyota Sienna minivan was trapped in a vortex of violence pounding my car so hard it was rocking back and forth.
After the storm consumed my minivan and there was no going forward anymore, my headlights created a desperate little cocoon where I existed in a hurricane of brightness with no way out. Snowplows threatened to crush me from behind or from ahead. I had no idea where I was on the road in relation to the lake on my right or in relation to the giant plowed snow bank on my left. I hadn’t passed another car for hours so I assumed I would for sure be dying by snowplow.
There was danger everywhere, but mostly inside of me. The whiteness had consumed me.
Everything seemed binary on Route 28.
Death by snowplow or death by frostbite and hypothermia.
Fight or surrender.
Survival or erasure.
Maybe everything is a little of all of that.
I can’t say how much time passed as I came to an understanding with myself in my mini-van on Route 28 in the upper peninsula. I was there an indeterminate length of time, with no control and with no purpose. Fear distorts time.
In the end, though, I was furious. Fury is always the last emotion for me before true understanding sets in.
I opened my car door, hung my body out of the minivan as far as I could, leaned my head down as far as possible between my door and the car, and by the light of my headlights, which was reflected everywhere, I found tire tracks to follow. I barely looked up at the road knowing the tire tracks were my lifeline. There was nothing to see anyway. Even if a snowplow were headed straight for me, I would never see it.
I inched my minivan forward this way, constantly searching for tire tracks, for evidence that someone had been here before me and had known the way.
Forty minutes later I was free of the worst of the storm.
I’ve told this story a lot over the years and the reactions are interesting. They range from irrational to bluntly accusatory to supportive.
Every so often someone hits on the meat of the real issue: “You could have died.”
After so many tellings of this tale, I’ve realized that the reactions of other people are not about them impugning my driving or my decision making skills. It’s about them being unable to accept that just driving could put them seconds away from death.
In every Covid conversation, in every Covid post, every single one, there are people who comment that the Covid disabled person or a person dead from Covid or a person hospitalized with Covid must have had a pre-existing condition.
“Well. They musta had some condition or disability. Right? Right?”
"They didn't take care of their immune system."
"They shoulda been more careful."
What they really mean is, “I so very badly need to justify why I’ll be safe, even though others have not been safe.”
There’s no real distinction between a snowstorm and a blizzard when you’re driving in one. All of our charts, maps, graphs, and apps can’t change this. Control is a savory illusion. I was nearly taken from the world by nothing more than water. That’s the way it is.
Everyone in the blinding whiteness has to convince themselves they are safer than they actually are.