On Tangerine Skies and Thestrals
Learning How to Live On Purpose
While I write this, the sky outside my window is orange. The turtle doves that were playfully pushing one another off of the cables yesterday are nowhere to be seen or heard. The air smells singed, sweet, and for a Bangladeshi immigrant, vaguely nostalgic. The reel below summarizes my feelings exactly:
Today, the air quality in New York City is worse than in Dhaka or Delhi. Climate change has caused extreme temperatures and drought in Central Canada, causing wildfires that started in March 2023 and have worsened ever since. This week, they have blanketed every American state east of Michigan with smoke. We should have been notified by Monday, when the city had enough information to warn New Yorkers that, at least, there could be hazardous air conditions. A reasonable plan with timely notification would have featured cooling center plans and warnings about possible health risks. Despite seeing endless news stories featuring before-and-after photographs of the New York City sky and screenshots tracking the increasing numbers, there seems to be little discussion of the health risks associated with inhaling toxic air. Perhaps this is designed to distract from political irresponsibility, prevent panic, or both. The major effects of poor air quality on the healthy and able-bodied include asthma attacks, bronchitis, risk of respiratory infections from fine particles, headaches, irritated eyes and sinuses, fatigue, chest pains, and increased coughing. Those who have histories of respiratory infection and lung disease are at most risk. Repeated or prolonged exposure can result in cardiovascular disease, neurological disorders, gastrointestinal disorders, kidney, liver, and skin diseases, and cancer. This is relevant; while the “smoke wave,” as Mayor Eric Adams called it, may pass by the end of the week as the wind patterns change, the Canadian fires are likely to rage for months unless they are blessed with plenty of rainfall. This means that there may very well be multiple phases during which the Northeast will be painted with orange smoke. We will all have repeated exposure.
The possible consequences are myriad for those of us with existing health conditions. In my particular case, a fifteen-minute walk back and forth from the pet store to get food for my cat, Kubo, caused an immediate migraine and sent me to bed for no fewer than four hours. While I now feel better, I’m dehydrated, and my brain is foggy. My head and limbs feel heavy. I live with one of the most commonly reported long-term medical consequences of long-COVID: Postural Orthostatic Tachycardia Syndrome, or POTS. For those of you who are unfamiliar, POTS is an autoimmune condition that affects the autonomic nervous system. One’s heart rate increases more than normal in the transition between sitting and standing. The body fails to coordinate heart rate and blood pressure. While people who do not have POTS have about 15% of their blood move below their heart when they stand up, we have far more blood move down, causing light-headedness, fainting, dizziness, nausea, headaches, chest pain, sweating, and a variety of other symptoms. About a solo cup’s worth of blood pools into our calves, often causing tightness and pain in the shins and ankles. The most relevant part of this for the risk to those who have survived long-COVID and live with resulting conditions is that POTS also causes shortness of breath. This means that a large number of people in affected areas who have survived long-COVID and have POTS and/or other respiratory conditions are at great risk of further complications during what promises to be a summer painted tangerine and charcoal many times over.
It’s hard not to have dejavu. Bill De Blasio waited more than two weeks to shut down the city, close schools, and keep people safe. On the federal level, we were not told the virus was airborne when they already knew. We watched from our windows as people were taken out of their homes in body bags and packed into vans of dry ice, and three years later, have lifted all vaccine mandates and obligations to mask despite evidence that we can still become sick in ways that can cause long-term conditions, and that there is an uptick in mysterious respiratory conditions hospitalizing young children. I was recently at a party where a medical professional who works in oncology told me how much I would love the upcoming dance party because “COVID’s over, the pandemic’s over, you can dance and be with people, it’ll be like it never happened! Party it up, babygirl!” My life has changed radically since I contracted COVID in March 2020, making the possibility of my attending a party, let alone a dance party, extremely rare. No, I did not punch the medical professional, despite the impulse. I left before the dance party ever happened. I try my best not to feel left behind or fear-monger when people expose themselves to dangerous medical situations, but it’s hard not to wonder why there are still New Yorkers jogging or biking around the city today, often without masks on. One would think that we had practice enough of staying indoors, but schools remain open, and most events were not canceled. I cannot help but believe that there will be a wave of illness. Smoke waves may very well prove themselves not only medically hazardous but deadly, and once again, we may only admit that publicly when it’s too late.
Once again, I must urge everyone to listen seriously to the disabled and become familiar with disability justice principles. I’m also increasingly interested in how the disabled and chronically ill speak to each other about being ill, and am considering doing a series of interviews to—and forgive me for the almost surreptitious soft announcement here—include in the reissue of my chapbook The Relativity of Living Well on the fourth anniversary of the COVID pandemic sometime next year.
I had an incredibly nourishing conversation with filmmaker and actor (and my cousin) Nashwa Zaman a couple of weeks ago about the connection between trauma, disability, and chronic illness, and particular attitudes toward self-care and healing. So many of us are intelligent people capable of creating or utilizing available resources to take good care of ourselves, but struggle. There is a particular flavor to this kind of personality. Those of us in this club tend to come from childhoods in which we were discouraged from having autonomy or the right to design our fates. We often know that something is deeply wrong, but are unable to articulate the nature of the source. We all have a long-standing ache that has more power over our choices than we are often willing or able to see and admit. Many of us are artists. Many of us are manic overachievers, workaholics, alcoholics, addicts, charming avoidants, or serially in codependent love. Many, if not most, of us have chronic illnesses, autoimmune conditions, and nervous system ailments hooked up to restless souls.
Nashwa and I discussed the consequences of lives lived with these aches. They prevent us from believing what we are capable of even as we show the world, and those of us who share the trait can see each other from afar. Nashwa grew up in Canada as a big Harry Potter fan and used the symbol of the thestral as a metaphor for what this feels like. (I grew up in Italy and had access to Harry Potter but lost steam and interest somewhere in the middle of a hundred-page quidditch game. At this age and stage, I do not have time to re-engage or care to give any space to the work of a primary figure fighting against transfolks’ legitimacy and right to exist, work, receive healthcare, etc. What morbid irony that the same person who gave young people so much hope in possibility and magic has become so consequentially toxic. It breaks my heart.) For those of you who, like myself, are unfamiliar with Potter lore, a thestral is a skeletal, winged creature the size and shape of a horse. It has a reptilian hide, and white eyes, and can only be seen by those who have seen death. The only one of his friends who had witnessed death at the time of this creature’s arrival in the narrative, Harry, upon seeing it, thinks he’s gone mad. This metaphor feels deeply apt. Those of us who have seen, well, some shit, and have not come out unscathed, can smell it on one another without necessarily knowing exactly what it is we’re seeing. We tend to band together to bear witness, to support one another, but also because we feel less alone in how stable or unstable we may be at any given time.
As we grow older, Nashwa and I are observing how fellow thestrals become and remain ill. Many have digestive issues that they do not identify as chronic or syndromic, headaches, migraines, skin issues, and other inflammations. Some of us, like me and Nashwa, accepted our diagnoses with a measure of gratitude. Having been gaslit most of our lives into questioning our experiences of abuse, neglect, and abandonment, we are vindicated when the body keeps the score in explicit, undeniable ways. As she wrote in a vulnerable Instagram post about her Crohn's Disease diagnosis, it proves to us that our lives actually happened. Additionally, it pushes us beyond an amorphous well of aches toward understanding the messages our body has to give about its many years of survival. Physical ailment often also sheds light on how our lives have reshaped our thinking and emotional health in ways that make us bad at the work of living.
The well of ache I carry manifests, among other ways, as a massive wall of limiting belief. Despite the faith that many have in me, and assume I have in myself, I am often paralyzed or self-sabotaging in the face of my own goals. This is what was gestating in The Neutral Zone (the Michael Bridges concept I discussed in my April Substack with the same name): The fall of the wall of limiting belief. Many have prompted me to write about my long and arduous route to shedding traditional South Asian filial duty, my struggle with food-related abuse, subsequent eating disorders and struggles with addiction, and my return to food through cooking. My experiences of violence and trauma have been sublimated in various journeys, habits, and artworks as a way to survive, if not heal. Observing the stunning work of writers like Melissa Febos, Tanaïs, Fariha Róisín, and Megan Fernandes inspire me and intimidate me in equal measure. In classic academic fashion, I cannot help but feel that I need further qualification in order to write my own experience. How deeply does the white supremacist, patriarchal, and elitist nonsense of institutional academy seep! So I’m taking a leap. I am challenging myself to begin writing about these journeys as I live them, here, in real time. If my musings bring any solace, inspiration, or even a sense of being less alone to anyone, I will be satisfied.
Adult survivors of child abuse and dysregulation—thestrals—often begin only by surviving on the understanding that we may not do so for long. I did not expect to survive. My doctors, at one point, did not expect me to survive. Like many others, I made attempts on my own life as a teenager and, upon failing, continued living as if by circumstance, by accident. We see ourselves as a mistake that keeps occurring, over and over again, every sun-up, consumed by guilt or confusion. We keep not dying while fully assuming that there is no real reason we would survive. Eventually, we wake up at an age we never expected to see. I am turning 36 this month, and can only think: Now what? One has to choose to live with intention, which also means planning for a future. This can mean financial stability or identifying passions, partners, cities, homes—chosen ways to live out the rest of our remaining days, however few, like we deserve them and are entitled to them.
This realization left me absolutely gobsmacked. In the name of “getting out of the house,” I spiraled. I leaned on my worst vices with my least stable thestrals on their bandwagons to avoid the implications. I looked well, got work done, and seemed fine while imploding. Then, eventually, I’d had enough. I hit a wall, and could see the difference between one kind of thestral and another. Some of us choose to live and find one another to figure out how. I have taken many steps back from said vices. I am returning to the creative blessing of food. I am writing as the expert of my own experience. I wake up early and go to yoga, am continuing meditative practices like crocheting and adult coloring, and revisiting Sufi submissions to something like divinity. I am holding myself accountable to a life I intend to continue living, on purpose. On the way, I am soaking myself in the art and wisdom of others who understand what it means to move from living as a life sentence to living life as a precious, delicate gift. Today that means canceling all of my plans and staying at home with plans to mask indoors and outdoors until the numbers come down. I hope those of you in affected areas will do the same. Until next time.
At the risk of fawning, I'm consistently struck by how excellent your writing is.