chronic illness – MOIRARTS

Day 365

We knew this day would come. One year ago, I was so anxious. I was a ball of tension waiting to collect my child and bring them home that Friday, knowing that schools and workplaces were closing all around us and having resisted the urge all of that week to keep us all at home ahead of the decision we knew was coming. Parents were distancing, we weren’t hugging, we were using hand sanitizer. My friends who are microbiologists were emphasizing all of this as absolutely necessary; I was closely following what had happened in Italy and stocking our pantry and freezer well ahead of our area’s shutdown.

This year, I learned the ways in which anxiety has served me and pushed back against the ways it has not. I have struggled to relax out of hypervigilance for decades; I felt a degree of relief when my nervous system’s level of alertness aligned with the events going on around me, even if only through the early part of the summer. Once my child and partner were both working and schooling from home, I was much less anxious. This was an actual full-blown crisis, and my body is calm in a crisis. It’s a state of being in which it expects to exist at all times, an expectation that causes so many problems for me when there is not a global pandemic during a rise of fascism threatening all our lives. Last year, my nervous system was like, look, see, I was right all along. There is a lot to be said for not being right sometimes.

It is not my desire to recap the entire year we all just lived through. It was awful. Many people died. Many people became and are now ill. From COVID, from isolation, from stress, from an inability to access necessary care for ongoing health conditions. It remains awful.

Somehow, we are all going to have to learn to live again. Newly. Now, in this post-2020 state. With our survivors’ guilt, with our grief, with the health impacts we don’t yet know the full extent of. I have been thinking a lot about the AIDS survivors I knew the 90s, mostly gay men who had either dodged HIV entirely or had lived long enough with HIV to arrive at the state where the drugs began to keep people alive for good. In 1997, a longtime survivor was someone who had lived with HIV for 10 years. We don’t even use that language anymore, but believe me when I say that survivors’ guilt around HIV endures among older LGBTQ people. Why me, why not me. All of us who are here now, still, will have to grapple with this, in ways we have likely been skirting the edges of throughout. Why me (with/out a job), why me (with/out an infection), why me (with/out a home), why my loved one, why a stranger.

I will say what activists and scholars have said for decades now about HIV/AIDS: there is no moral message in a virus. Who gets it, who does not. Who dies, who does not. There is no morality here, no good or bad. There are odds and chances, near misses and sudden deaths. We have survived. Others have not. It is not because of what any of us individually did or did not do, although it is true that systems and policies failed many of us in profound ways. We did our best in a situation largely beyond our control, made choices within frameworks presented to us, frameworks that are uneven and unequal. We can spend the rest of our days shrinking ourselves down to fit into a place of guilt or we can find a way to grieve and live.

Today, I dropped off a piece of art at a local art center, for consideration as part of a show of community work that will go up in a local coffee shop, a collage I made in an online class I took through them this fall. I am wearing a t-shirt commemorating an online concert by one of my favorite bands, streamed in the early month of the pandemic as a fundraiser for the food banks in their home state. I am typing this on the new computer I had to buy when it became clear that my old computer would not rise to the needs of the situation when we were all online all the time. Next to me is the new phone I eventually caved and purchased once I accepted that no one got my texts on time and I was largely unintelligible on my old phone, which had become the way I connected even with my friends on the next block. Farther into this room is my child’s work desk, with a school-issued computer; the repurposed train table now covered with LEGOs; a stack of books waiting to be read by authors I’ve supported through online book talks; my trusty paper planner that’s filled largely with notes about when I cooked what so that we don’t go through all of this only to die of food poisoning in the end.

There is nowhere to rest my eyes that doesn’t reflect some adaptation to what we faced last year. The question is: what situation do we find ourselves in now? Not just where do we go from here, but how. Just yesterday I talked to a friend on the phone and we vowed to embrace each other’s weird, awkward, un/inhibited behaviors when we see each other again. That’s what I wish for all of us, as we emerge blinking into the light of 2021. The pandemic is not over yet, but we can start to learn a new way of living, together.

Day 31

A month, we’ve been here in the house together. All day, every day. A few times, we’ve gone for walks alone; four times, one of us has gone to the store. Otherwise, three people, one house, around the clock.

It’s a bizarre situation, to know that we are so fortunate to have a home that is spacious enough for all of us to be comfortable; to have each other to interact with; and to have our incomes be so far unaffected. I am acutely aware of how many people are sheltering alone in apartments; are continuing to be at risk in jobs they cannot do without and cannot be done from home; and how many families have each other but not the space to be out from under each others’ feet. I am actively grateful for our yard multiple time every single day; I grieve for my friends struggling to stay healthy in small, lightless spaces.

At the same time, we are challenged by the impacts of my chronic illness and inability to access my typical maintenance treatments. My fatigue ebbs and flows, even while the demands of school and cooking do not; our stable income relies on my partner being essentially unavailable for 10 hours a day, regardless of my capacity; and my pain and musculoskeletal dysfunction are increasing day by day. I still manage, but I’m starting to have persistent aches and areas of constriction that will not ease with the treatments I have available at home. I try not to worry, but it’s impossible not to wonder when I will be able to get back into care and how much I’ll be limping when I finally do.

We also have the specter of food scarcity looming. While we are all unclear on if, how, or when food shortages will start to manifest, our family’s need for a regular supply of specific allergen-free foods makes that uncertainly feel more urgent. I would like to believe that state governments will act to adapt our food systems to redirect the tons of food that are being trashed and discarded, from restaurants and institutions that are closed to the food banks and pantries that so desperately need it. At the same time, I know that if our household becomes food insecure, two out of the three of us will not be able to eat the common carbohydrates that are provided as the bulk of the sustenance. Striking a balance between mindful preparation and anxiety-driven stockpiling is nearly impossible while we can only be guided by supposition and speculation.

What we have learned in this month is that there are some ways in which our family is resourced to live this way for long periods of time, namely those aspects that touch on our physical living space and our temperamental suitability to working or learning from home and through screens. In other ways, we are watching the clock and our diminishing stores of rice and meat, despite knowing that way madness lies.

Balance. What that has meant for us is an ebb and flow of interaction with those we can’t currently sit with and share a coffee or a romp in the yard. My child exchanges video messages with their friends wherein they mostly demonstrate their prowess with the silly effects and drawing features. I have been checking in with Wallace and Jay whenever my schedule allows, for my own enjoyment in being enveloped by smart, music-loving, city dwellers as well as for my contribution to a friend’s connection to the world outside a small apartment. We’ve been donating money to food banks and migrant services, participating in phone and letter drives to urge officials to support stronger relief measures, and bartering with friends who are willing to make us masks for the low cost of our gratitude and some extra material to put towards masks for others.

As so many are now emphasizing, physical distance does not have to mean social isolation, and all that we can do to see and hold each other emotionally is support that could turn out to be life-saving. Anything we can do to contribute to ensuring that people have shelter, sustenance, and safety, we should do. In the words of the old anthem, we fight for roses too, and those roses are us and our sanity. Every day, often before I am even out of bed, I am holding you in my mind’s eye and I am thinking so vehemently, just survive.

Day 27

The days are starting to blend together. Days when we finish schoolwork early feel like Fridays, days when we are bored and cranky feel like Mondays. We’ve settled into routines, but they require us to forget that we haven’t seen friends in almost a month or hugged anyone outside of the three of us in that same amount of time. Working from home, managing school online, both require a huge amount of physical, mental, and emotional energy. At the same time, we seem to be doing okay. Spring keeps offering us flowers and blue skies and small birds and we keep inviting it in.

I have been a little fixated on why we are doing okay. Are we numb? In denial? Then the other day I read one of several excellent pieces about how disabled people are used to living lives that are socially restricted and it clicked: I’ve been living much like this ever since becoming seriously ill three years ago. I have to carefully manage my energy during the day to make sure we have school, food, and home covered, and there’s very little left by the end of the day for going out in the evening. I know how to work for a while, take a walk, rest with a book, plan our cooking so that it all gets done when it needs to, throw in some laundry when I have the oomph for the stairs.

If anything, being quarantined has created a socially legitimate reason for me to not be at all the openings, local bands, dance parties, and whatever else is going on. I have folded my kid’s schedule into my regular day, working mostly in the mornings when I have peak energy, resting and prepping for dinner in the afternoons. Not having to manage the trips to and from school in the morning and afternoon opens up a surprising amount of space in our lives. Staying in reading or watching TV at night because I’m too exhausted to do anything else doesn’t feel as isolated when I know everyone is doing it.

The grief that many are feeling at the loss of freedom, the restrictions, letting go of what you thought this year was going to be: I went through that acutely three years ago and have been living in that space to varying degrees since then. Only now had I begun to reclaim a life outside the home, making art and sustaining friendships with those who stuck around through the years when I felt like I was barely living.

What I can tell you from those years is that this is a life. This is also living. It took me a long time to move out of feeling like I was only losing time or being held in some kind of potentially endless pause in my real life. Eventually, I accepted that I can’t know how long this will go on, whether my situation will ever change. If it does change, it will not go back; I will not get to start again when my child is 7 or 5 or 2 and have those years of struggle back again in different form. There is no return, no path to before. Only this now, only whatever comes next which we have no acceptable choice but to live into and through.

This is not meant to be one of those rise and grind pep talks that are treating COVID-19 like a sabbatical or a Kripalu retreat. Nobody here is trying to be our best selves. Or rather, we are going to be the same best selves we always are, the selves who are going to survive this. Who are getting up every day and moving through anxiety, pain, exhaustion, and the weight of all of it, and finding our moments of peace, laughter, and connection, but also anger, fear, and fatigue.

We were always living, this was always a life. All we need to do is survive. To live into who we are.

Day 13

This week has been rainy. We have still gone outside every day, but the lack of sunshine has exacerbated the depressive aspects of our family quarantine. I’ve been reading too much news too often for too long and it’s definitely negatively affecting my spirits. On the other hand, not regularly reading the news enhances my fear that I will miss something important and be blindsided by it when it’s too late to prepare. Usually that’s an unfounded anxiety I can reassure myself out of, but lately not so much.

Last night, my partner had to go into his office building to get his computer, as the work computer that lives at home crapped the bed, to use the 70s vernacular of our parents. On the one hand, only a handful of people have been in the entire building in the past 12 days and the computer has been locked in a closed room since then. On the other hand, just yesterday one of the people who works in my partner’s division reported that they are sick. The risk of an earlier transmission is small, as that person had already been out of the office for 3 days when the entire agency went to telework. Nonetheless, the abstract knowledge that unknown people around you are carrying the virus is qualitatively different from the concrete knowledge that specific people around you are carrying the virus. So. That was anxiety-inducing. Now we’re home again and I’ve logged the trip in my daily planner, which has been repurposed as a backward-looking record of our trips now that we have no planned events in the near future.

Looking out the window by my desk, I have a view of the most secluded corner of the garden, the little stretch of the back yard that is wedged in next to the basement stairs and bordered on three sides by fences. I converted it to a garden from scruffy grass about ten years ago by adding some shrubs along the border fence and various ferns and what have you. It’s a favorite spot for birds, with various places to land or perch and an ever-present leaf litter full of–I can only assume–delicious bugs and seeds. If I’m lucky, I can catch a hummingbird visiting the coral honeysuckle or the seasonal visit of the migrating Yellow-Bellied Sapsucker snacking in the dogwood. Thanks to a little bit of planning, there’s almost always something flowering to catch my eye.

It’s a beautiful spring out there. When the sun comes out we head out for our daily walks and it’s truly lovely. Flowering trees, all sorts of daffodils, the little clumps of spring bulbs that my neighbor brought back from Martha’s Vineyard so many decades ago now. Once it becomes even a bit less chilly than now, and the hibernating bees have all emerged and the overwintering eggs have all hatched, we will go out and clear up the stalks and sticks and spend some time with the dirt. Peace peace peace.

Day 7

Yesterday, I needed a beat. The cherry trees are gorgeous here, all up and down the block. We’re fortunate to have a park at the end of our street with a creek that can be forded by children at numerous places. Every day, and often twice, we take a family walk down to the park, peering into the Little Free Library without touching it, crossing the bridges without leaning on the railings. Nature is still here, and it’s a beautiful, perfect, mild, early spring outside.

Over the last year, two of my 90-year-old relatives and three friends my age have died, two from cancer and one from suicide. Yesterday, I couldn’t stop thinking about them. About how frightening this situation would be for those five specific people who would each be particularly vulnerable. I couldn’t stop thinking about the versions of those people whom we all have in our lives right now, who are facing this crisis, whom we are worrying about while trying to keep sane alone in our apartments, or stay upbeat in the face of a child we’re trying to protect from knowledge.

I have lived with anxiety my whole life, in conjunction with or as a corollary to my PTSD. I have never used pharmaceutical medication, despite periodically asking my care providers if they thought I needed to. Always I’ve been told that I’m coping well enough for the potential negatives to outweigh the benefits. Always I have reluctantly agreed and I’ve weathered the ebbs and flows of strains on my mental health.

It’s been several years since my strategies have been as severely tested as during this past week; this experience is already one of the most challenging of my life, and I have no doubt it will continue to rise in the ranking. So, I needed to step back from media that has, up until now, kept me connected with writers, thinkers, and social analyzers around the country and world. I needed to step back from other people’s heartbreak and worry while I took stock of my own.

What, then, of days six and seven? We went to the store, successfully stocking up on frozen vegetables, a category of food it had not occurred to me to buy when I initially stocked up two weeks ago. I hope I was only mildly stressful to my fellow shoppers as I nervously babbled my way through my shopping trip with fairly wild eyes. We completed the first week of remote school, capping it off with a music lesson where an entire class of kids played recorders along with their teacher. (Thankfully, she had each child mute themselves so we could only hear her and our one child, which was surprisingly bearable.)

To celebrate the arrival of spring break, such as it is, I baked a crisp and we pushed back bedtime, allowing the child to swing on the tree swing in the cooling dusk. It was nice. It would have qualified as nice before. I hope everyone is able to take a beat when they need it too.

Day 5

The best thing I did today was successfully avoid checking the news on my phone for the entire morning. After my exhausting anxiety spike last night, I woke up before dawn so tense that I couldn’t breath without crying and I realized that I am going to need to make some drastic changes to my media consumption to get through this with my health intact, virus or no virus. I can’t let my nervous system get stuck in rapid cycling and crashing without weekly access to acupuncture or physical therapy for the first time in over a decade.

So, I turned the phone off and stashed it in my bag. I remembered being on the daily path of our neighborhood fox a few years ago and sitting out on the porch to watch for it each day, so I went outside and enjoyed the chilly morning wrapped in my decades-old wool tartan blanket. No fox, but I watched a family of young squirrels romping around on our maple tree and listened to the crows get going. (As much as I love doing that with a cup of coffee, that probably should go too.)

The morning was taken up with school, which wasn’t nearly as bad today as it was yesterday. We both knew what we were doing and he was able to work pretty much independently. I went in a different room entirely and sorted all the papers that have accumulated over the past few months, recycling many and shredding more. For the past few years we’ve been hauling our shredding in to the work shredders in small batches, but since that’s not an option I resorted to actually using the small, slow, incredibly loud home shredder that’s been sitting in our basement this whole time. No more cash advance checks for us!

With the rest of my not-copious-enough spare time today, I read. I love to read; with the library closed indefinitely, this seems like the perfect time to read all the books I have purchased or free-libraried. Typically, I struggle with choice paralysis and end up ordering new releases from the library. Yesterday, I decided that I would just go to the shelf of books I haven’t read–because I loosely grouped them that way a few months ago–and just start on the left and begin reading. Which means that today I finished Exit West, by Mohsin Hamid, and moved right on to All Passion Spent, by Vita Sackville-West. Next up is (I think) the flight memoirs of Antoine de Saint-Exupéry. I have eclectic reading taste, to say the least. At some point on this shelf is also Hitlerland, and relating this tidbit to my partner prompted him to say, “That shelf is a perfect example of why I only read science fiction and fantasy.”

For the rest of the day, I tried to make things seem as normal as possible for a nine-year-old while not panicking about how long this is going to need to go on. I also reached out to the woman who cleans our home and got an address where I can send her payment. I don’t know how long we’ll be able to continue to afford to do that, but we will pay her for as long as we are being paid ourselves. I hate to think of all the small businesses facing abrupt closures and loss of income.

Tonight I’m hoping that we’ll see quick and effective action by our elected representatives and that we’ll continue to join together in communities to advocate for ourselves and protect the most vulnerable among us. Not just from this deadly virus, but from houselessness, hunger, and destitution. At the end of the day, we are all we have.

Cooking for the apocalypse

This morning I realized that I have skills and experience relevant to surviving this apocalypse without losing our minds. Namely, cooking all your meals for yourself in your home without having it take all your time and energy. For most of my adult life, I’ve been limited in what I can eat out. For the first decade, because I was a vegetarian. Then my body took a turn and progressively stopped tolerating the majority of the foods I used to eat, requiring me to start cooking for myself just about everything that touched my lips.

With a child whose system is as reactive as mine, I have years of preparation for what we’re facing. In our family, I’m the cook because I have the most experience cooking with food restrictions and experience translates into speed in preparation. I also hate cleaning, so I’d much rather be the cook. In the spirit of helping everyone not freak out, I offer up what works for us.

Eat the same thing for breakfast every day. Each of our family members eats the same thing for their breakfast, although not the same thing as each other. I eat yogurt with raspberries and honey. My partner eats cereal with milk. My child eats turkey sausages with buttered toast or oatmeal. All of these things are easy to get out of the fridge and prepare when you’re still mostly asleep.

If you love scrambled eggs, bacon, and pancakes–and let’s be real, who doesn’t–I recommend making those foods as a breakfast-for-dinner meal. Frittatas are also a nice way to get eggs and vegetables.

Keep your other meals simple. This is a necessity for us, since we can’t eat a lot of the things that make sauces delicious (onions, garlic, peppers, tomatoes).

Dinners consist of rice (or rice noodles, although those don’t reheat as well), meat (or occasionally lentils), and vegetables. Ideally, we have two vegetables per meal, sometimes three, and sometimes the vegetable is pickles. Most of what we eat is roasted, as I like the flavor and it’s the easiest way to prepare them (in my opinion).

For lunch, I have the same thing as dinner, and my partner and child choose between dinner food or PB&J sandwiches with a side of chips, popcorn, or pretzels. Snacks are a choice of carb plus fruit, and nuts or cheese for me. (I seem to have the only child alive who doesn’t really like cheese.) We keep a stock of all the snack food my child can eat and then I try to bake something a couple of times a month for snack food, usually muffins.

Plan to use your microwave. The biggest shift in our style of cooking has been to cook everything ahead of time and reheat portions as needed. Basically, we are constantly eating leftovers. We always have rice in the fridge, as I make a large batch at a time; I feel less bad about this since reading that cooling and reheating rice causes the oil to bond with the carbs and improves the nutritional content.

On the days I have the energy for vegetable chopping, I prepare and roast or sauté three vegetables at a time. Most commonly, I roast cauliflower, broccoli, rutabaga, brussels sprouts, butternut squash, and sweet potatoes, and sauté chard, bok choy, cabbage, and mushrooms. When I can get good green beans, I steam those.

We cook meat as needed, most commonly bratwurst-style sausages or roast chicken. I have a ground beef dish I made up that doesn’t meet anyone else’s standards for food but I like it. (Brown ground beef in a covered pan with garam masala spice and salt, add finely chopped zucchini, cook until the zucchini is mush, eat with rice. Yes, this was originally a way to get zucchini into my food, but now I have come to like it.) I bake chicken thighs which my child and partner then slather with Adobo salt (green, natch).

All of this goes into the fridge and gets assembled into individual bowls of foods that each of us can and will eat for dinner and then heated in the microwave.

Make a double batch of anything that requires extra effort and freeze half of it. About once a month I make soup, lentil or squash, and put half of it in the freezer. We do the same with meatballs. Then when the rest of the family is tired of eating chicken and rice, we can pull something different out for a few meals.

Baking definitely requires extra effort and most families will devour baked goods in less than 36 hours. In our case, my kid really likes muffins for snacks but also runs out of steam for them after a few days. I always freeze half the batch and then (wait for it) warm them individually in the microwave for 30 seconds. Cookies and brownies freeze well too, if baking for relaxation is something you like to do. I’ve never tried to freeze cake or bread, but I hear it can be done.

Rely on processed food when you just don’t have it in you. Sometimes I want to eat cheese for dinner and don’t have the bandwidth to cook. On those days, my child gets chicken tenders and fries, or tuna salad and a bread and butter sandwich, with pickles as a vegetable. My partner loves those days because he can eat all the food we can’t, like frozen pizza and burritos. Normally I’d suggest mixing in tacos or pizza out if you can, but since all the restaurants in our state just closed, we’re going to have to rely on our wits and our homes.

Lastly, just make sure you eat. The most important thing is to just make sure you get fed. I can tell you from experience that your adrenal system is not going to love subsisting on fear, coffee, sugar, and alcohol. All of those will probably play a role in our lives in the weeks and months to come, but food is necessary too! Be fed, be safe, stay well.

Day 3

Today, I’m exhausted. Part adrenaline crash after the past week of high anxiety and running on cortisol, part staying up too late night after night either glued to the news or trying to avoid the news with bad TV. Oh, and there’s the small matter of my chronic illness that leaves me with maybe half the energy of a typical healthy person on a good day, which I’ve just been ignoring while I rush around trying to prepare for our lives under voluntary quarantine. (I continue to believe that “social distancing” is insufficient to capture the risk of contact and how absolutely critical it is for people to isolate as much as they truly possibly can, but I also want to emphasize that we have not been identified as at particular risk based on contact with someone sick. I am sadly sure that will change.)

In addition to all the physical stressors that made me crash out and need a nap at 2pm, it’s been emotionally challenging to provide honest but reassuring support to a sensitive and worried child while trying to take pains to protect my own sensitive self from worrying too much. But it’s impossible not to worry! At least, I tell myself, this is (finally) something real and significant for my brain to worry about. Instead of worrying, I just keep moving.

One of the things we did today, once my partner went up to start his work day, was sitting meditation and a little bit of yoga. I need daily movement practices if I’m going to get through this without increasing pain and decreasing function, as I don’t expect to be able to get my regular physical therapy or acupuncture treatments for the foreseeable future. In addition to my own (still frustratingly unclear) risks, all my practitioners are over 60 and I’m wholly unwilling to contribute to their risk of death.

So, we stretched. We walked. We sat. We rested. Then we played a board game before bed that I was mildly petulant about losing despite trying not to be, because I am the most sensitive and easily frazzled of the three of us who needs the most space and time to myself–like, most of every day–and whoo boy am I not going to be getting that need met for a long time.

Tonight, I’m hoping everyone was able to find shelter, food, and all the loving supports they needed today, particularly the children and families who rely on the apparatuses of the state for basic needs. I know we fail so many people every day, but I continue to hope for everyone’s safety and security. Hope at night, fight for change during the day. Peace peace peace.

Day 2

I don’t know if I’ll be able to keep up the habit of daily writing, as I have almost never in my life been able to sustain a habit of daily anything. But for now, writing is what I have always done to process my life and still my whirring brain, so writing is what I will continue to do. I’ve been going to my desk first thing in the morning, with coffee in my favorite mug from Acadia on my rustic wood coaster from Wexford. Rather than the endless cycling of worries and rehashing, I’m making a concerted effort to record what’s going on outside my head. Will I be contributing to the historical record in any meaningful way? Probably not. But I’ll be contributing to not losing my ever-loving mind, so there’s that.

On our first day home together yesterday, we had a bit of a manic rah rah go team energy going all day long. Today, I think we all had a bit of a rah rah team energy hangover. My edges were fraying with the growing awareness that 2:30pm on March 13th was the last time I was going to be alone for a very long time. My partner’s edges were fraying with the awareness that I was going to be incessantly bossy–despite my best efforts–for a very long time. Our child was beginning to see that having two parents in the house with them at all times could mean seemingly endless opportunities to be assigned a chore when you were just innocently walking around in a costume trying to find something less boring to do.

Also, both of them neglected to eat a meal in the morning, breakfast and snack respectively. I didn’t think that an item on our family meeting agenda needed to be “no skipping meals!” but apparently I am not the perfectly insightful team leader I believed myself to be. We clarified that over a double-sized lunch.

Lunch is also when we agreed that nobody is allowed to have their feelings hurt when mom puts on her noise-cancelling headphones. Even if you thought you were in the middle of talking with her. (Speaking of noise-cancelling headphones, Roxane Gay deserves credit for probably saving my family’s lives during this period of household isolation, as I followed her recommendation in requesting said noise-cancelling headphones for my birthday a year ago and they are proving to be indispensable.) We’re all adjusting, some of us to being with fewer people all day and some of us to constant human contact.

Still, today was in many ways just another weekend day. We cooked, we cleaned, we planned for the week. We set up an admittedly haphazard work-from-home area in the bedroom for my partner, who spends most of his day talking to people about confidential stuff. We agreed that academic work (i.e. that chunk time that requires me to be actively involved in what my kid is doing) would take place during my best time of the day, which is in the range of 9:30am to noon. Most of our morning routine will stay the same, as the rounds of wake-up pills, waiting, empty-stomach pills, waiting, with-food pills and breakfast, then waiting to feel normal is a fairly non-fudgeable process for me.

Today, despite the “dampish coldish” weather, I am grateful for our porch and yard. So many people do not have outdoor space that is not shared with other people and being cooped inside is no joke. I am grateful that it is spring, that we have so much we can do in the garden, having fairly well neglected it beyond the bare minimum for the past few years. I am grateful that my health is relatively stable; the prospect of going two months without the weekly treatments that keep me moving is daunting and not ideal, but it does not throw me into a panic of wondering if I will be able to get out of bed or walk up and down the stairs a few weeks from now.

On our walk through the park today–during which we assiduously moved well off the path the rare times we came across other people–I collected a fully intact tulip dogwood blossom from the ground. I love these trees, so bold and colorful, blanketed with silky petals before their leaves come out. So many worries are weighing on me, the virus already affecting work and travel plans and starting to appear in people I know in a variety of cities. Most of them will be ill and then recover, but I fear for those few who will not. I’m not a churchy person, but I am also grateful for the several ministers among my friends and the heartfelt prayers I know they are sending up on our collective behalf. All the world fears, all the world grieves, and still beautiful flowers rain down around us in this uncertain spring.

Calling people hoarders is ableist

For all that people online talk a big talk about disability rights and support, I’m seeing a whole lot of bullshit policing and attacking what people are putting in their shopping carts. Cries of elitism, selfishness, and hoarding are everywhere. Assumptions abound that everyone is abled who is not visibly disabled, and therefore not meeting any real need with their purchases. And I have to say, it’s fucked up.

First off, the language itself is ableist. We’ve spent years pushing back against words like lame, spastic, crazy, moron, idiot, crippled, not to mention the r-word, and now we’re labeling everyone we see buying more food than we think they need “hoarders”? Even if they are, in fact, hoarding, hoarding is a serious mental illness. But it’s okay to label and insult people for it now?

Second off, we seem to have completely reverted to not understanding the existence and large prevalence of invisible disabilities. Many many (many!) disabilities affect what people can and can’t eat. Not all of us have the luxury of walking into the store and just grabbing whatever’s left on the shelf, now or in a few weeks when production and delivery of groceries has slowed and replacement of specialty items has declined. It is difficult enough to find food on the shelves in the best of times, so we already stock up when we can. It’s understandably anxiety-inducing to wonder how much longer we’ll be able to.

Once we reach outbreak status, as we are on the cusp of in DC and already see in Seattle and New York City, many of us will not be able to go out and shop nor will we necessarily trust other people to be able to do it for us. My child has a list of 17 food allergies to accommodate that only 2 people besides me and my partner ever reliably screen out of his food; I have more foods beyond that which I can no longer eat due to my tissue disease. While able-bodied people are shopping for 1 or 2 weeks and assuming they’ll be safe to go out and restock then, we are anticipating needing to live off what we are able to procure for 3 or 4 weeks at least, until the incidence of the virus subsides enough in our area to make it low risk to be in contact with other shoppers.

Lastly, the obsession over how much toilet paper people are buying is really yanking my chain. Guess what? People shit! Lots of people shit at work and lots of kids shit at school, but for the next few weeks every single one of those shits is going to take place in homes. People with disabilities that affect their digestive systems shit particularly frequently. So yeah, we don’t want to be wiping our asses with our high school copies of Romeo and Juliet, if that’s all right with you. Medications that make us have to pee a lot are also incredibly common, so women in this situation need more toilet paper too.

Of course there are people being assholes in all of this. Profiteering off of a supply problem is an awful way to behave whether you’re a corporation or an individual or a government. All of those people should rot in hell. But the assumption that everyone you see at the store stocking up is in that category is corrosive to our ability to work together as a community right now. The empty shelves are a problem related to the profit model of grocery supply chains, because all the thousands of people who rely on this store were told to buy 2 weeks worth of all their food and toileting needs at the same time and the restocking assumptions are not designed to accommodate that. Stores now get daily instead of weekly deliveries and have very little food on hand “in the back” to replenish what sells out.

There are disparities we absolutely should be questioning. Are there necessities that, in the absence of increased supply, should probably be rationed based on the numbers of people in your household? (But do we really want to force people to tell the clerks about their IBD and increased need for toilet paper?) How are we going to help people who can’t afford to buy two weeks of groceries at one time, even if those groceries were in stock? How are we going to help people with food vulnerabilities get what they need to replenish their supply in two weeks? What can we do to pressure local and state governments to influence the grocery supply chain?

As so many people have already noted, this pandemic is revealing all the vulnerabilities in our social systems. Nobody should be entirely dependent on charitable donations to food banks at a time when supply is strained and people’s ability to continue to donate is uncertain. We will not come out of this unchanged, as individuals or communities. Many many people are going to sicken and die, and those who cannot self-quarantine for financial reasons are going to be disproportionately affected. We need to do everything we can to push for protections and supports for our most vulnerable community members; we are all in this together.