Why Social Distancing Matters

This week on social media everyone has taken a break from being a recreational political pundit and shifted to their part-time gig as armchair epidemiologists and prepper-come-lately, trying to stay ahead of the internet snark with their hot takes about who is buying too much toilet paper and exaggerated concern about how little other people have been washing their hands up until now. I find myself in a never-ending cycle of closing individual apps due to virus fatigue, then logging back in minutes later to see if there are any updates I should know about. I am constantly torn between pulling my oldest out of school and just choosing to remain calm and stay the course (and, if we’re being honest, weighing the realities of being with two kids 24/7 vs the likelihood of him being a disease vector). My family lives in a whole new world now, thanks to cancer. For what it’s worth, I’m glad you’re stocking up on Charmin. If it keeps your sick self out of the stores, go for it.

I am equal parts embarrassed and proud about my preparedness—I am not now, nor have I ever been a Doomsday Prepper. I have, however, mostly since becoming a widow, begun to stock up on extras around the house, in the event of an unforeseen emergency. I like knowing that I have backups of not only food to last a few extra days but knowing that we have luxury items like wine and chocolate to tide us over in the event we’re homebound. I think of it as responsible pet ownership to have an extra bag of dog food on hand, in case we’re snowed in, or the zombies come. I think it’s responsible parenting to keep extra meds on hand so we’re not in a position to decide which member of a household with a sick kid has to go get Tylenol in the middle of the night. When I was alone in parenting, the choice was even more dire—take a sick kid with me? Wait until morning when someone can deliver? I am also of the opinion that it’s responsible partnership to ensure that you and your spouse have enough vodka to spread out over a two-week lockdown with three children and a dog that you might eventually be forced to feed to the zombies. Our household love language is “mixers.” So, yeah, I stay ready. When the panic over COVID-19 began to hit Twitter, I knew that all I needed to do was shore up some supplies like frozen meats and make sure we have enough diapers for the toddler, a backup supply of boxed wine and, yes, toilet paper, because I don’t know what is wrong with you people, but if I am stuck at home for half a month, I absolutely want to be able to wipe. I cannot speak on anyone else’s take, but... I have a decent supply of TP.

Joking aside, I have the space for a toilet paper shelf and a wine shelf. I have practice in making sure my household is prepared for minor emergencies like an ice storm or something of that nature, where going out is inconvenient and somewhat dangerous but not life threatening. Now, however, something as simple as needing to run to Wegmans for toilet paper and mixers could, indeed, endanger actual lives in this household. Vivian doesn’t go anywhere but the hospital. So that’s awesome—zero contact with the outside world, except for the one place that people with the highly contagious novel virus are certain to be. She doesn’t really interact with people outside of our family—just her brother who is in public school, a place that, by his own admission, is “really gross sometimes, and not great at washing hands,”; her younger sister who is in daycare, so…snot. Her stepfather works outside the home, and me, the one who takes her to and from that same hospital, the one who pushes the elevator buttons and the wheelchair. The one who signs us in and pays the parking garage fees. Outside the home she has contact with her grandparents, one set of which care for elderly great-grandparents, and another grandmother who works with cancer patients--a literal herd of immunocompromised people-- every day. Our bubble is small, but it is fragile in some very key areas.

While we may mock the simplicity of advice like “wash your hands” with the retort “are people not washing their hands?” I am here to tell you: people are NOT washing their hands. Viv got an E-Coli infection in January. You can look it up, but I’ll give you the basics—it’s a gastrointestinal bug. It’s a poop germ. People don’t wash their hands. And you know who else doesn’t wash their hands enough? Probably you! I have a very sick kid, for goodness sake, and I would like to think that I went from a “normal” amount of hand washing to a more serious and conscious regime upon her diagnosis. We have sanitizer around the house and are always reminding the kids to wash, and to wash well. Now that we’re all hyper conscious of washing and keeping our hands away from our faces, the extent to which we may not have been washing properly in the past is pretty clear. Did I always wash my hands when I entered the house? Was I always vigilant about who sneezes and how close to me they were? Certainly not. Pretending that we have all, individually been the paragon of hygiene while the rest of the unwashed world have been blissfully blowing their noses into their hands is not helpful. You have almost certainly given someone else a virus in your life, almost certainly without intending to. Likely it happened before you knew you were sick. That time you mentioned to your co-worker that you “felt like you might be coming down with something” while you made coffee? You exposed them to your “something.” When you stopped by the drugstore on the way home to pick up chicken soup and tissues? You put your lil germs on things. Sorry, I know you were content to hide behind the strength of your memes, but you, too, have carried and transmitted viruses. You are not an evil person for having sneezed on the train or coughed on the elevator, and those who contract COVID-19 are not bad people either. We’re human and disease is something that comes with the territory.

Here’s a scenario that is real for us, because it happened two weeks ago, a little mini-glimpse into the decisions we are faced with: There was a chance Vivian needed to be admitted to the hospital overnight for a non-emergency, but there were no beds available. Luckily, we didn’t have to stay, and the issue resolved itself. The floor that Vivian stays on is for kids with blood cancers and related disorders. They all have low immunity. So, hypothetically, when little Kennedy in room 6 is admitted for an infection, and Xander in room 7 is admitted because he was just diagnosed yesterday and has to be in the hospital for a month, and Lily in room 8 has chest congestion, while Brendan in 9 is here for Interim Maintenance, which involves 4 day stays for 8 weeks…and suddenly rooms 1-4 are pressed into service for children who have been exposed to COVID-19, let’s hope that room 5 stays open for Vivian should she come down with any number of the routine complications that threaten her everyday life, and that it is also available when she comes for her scheduled chemo stays. I shouldn’t have to worry that there won’t be hospital beds for her because people decided that the illness is a hoax and isn’t much worse than the flu (which, I might mention, is no walk in the park! Getting the flu is downright miserable and disruptive, even in healthy people!) Worst case scenario is that the hospital and staff are overburdened with very sick children to care for, and nowhere to put them. Best case scenario, kids like Vivian have their life-saving treatments delayed until the demands on the hospitals lessen and the medical professionals have the ability to deal with non-critical, but very essential cases. Every delay in her treatment increases the chance of relapse in her future.

In many ways, the “this is no worse or deadly than the flu” arguments are right. People get sick (which I remind you again, SUCKS! The flu is NOT fun! Stop acting like you don’t want to evaporate into the ether when you get sick. I’ve seen your Facebook pages. A sinus infection has you laid tf OUT and a minor foot injury has me looking at pictures of your black & blue toes for a month. Don’t play like you just get the flu and carry on with your regular lives)  Realistically, if you are a healthy person, wash up and try to keep yourself well fed and rested to avoid getting sick. Try and reduce the number of places you go where there are lots of people—regular advice that should be expounded upon every flu season. But aligning this outbreak with the flu is misleading, because the flu seems ordinary to us now. The reason people are panicking about COVID-19 is not because this is some horrifying flesh-eating virus—indeed, I think that is more of why people are complacent. We want our pandemics to be sexy and scary. We want them to disrupt the world order in a way that allows us to live out our Walking Dead survival fantasies. We want our outbreaks to star Gweneth Paltrow. We don’t want them to be a sneezing disease that kills grandpa! Grandpas die of lots of things! Grandpas are always dying! Wake me up when I get to hunt down the psychopathic one-eyed villain who has the weapons cache and access to fertile soil! This pandemic doesn’t star Brad Pitt, so let me put it plain: your refusal to engage in social distancing—and that’s what stockpiling toilet paper is about-- because you think it’s silly or because the stakes don’t seem high enough is selfish. You all love your kids, right? You love your dogs and your moms. You love your nieces and nephews, your students and your neighbor’s kids. You wouldn’t want your sick pupper to have life-saving treatments delayed, would you? You would be crushed if you learned that your nephew was left in agony with a broken leg because emergency departments are overrun with people experiencing shortness of breath. Do you want to rush to grandma’s deathbed because the complications from her COPD and a bout of pneumonia last year compromised her so much that one sneeze from someone who swears that the virus is “politicized” couldn’t be bothered to send someone else to pick up his prescription and stood behind MawMaw in line? Do you really want my daughter dying of an illness that could have been slowed by more people just taking it seriously and stocking up on toilet paper? Because that’s what I hear when I read people’s callous qualifiers like “only the elderly and immunocompromised will die from this.” The immunocompromised are us. If you don’t fall into the category of people who will die from this, would you please now consider yourself someone who falls into the category of people who have a duty to protect those who will?

When the Price is Right

October 23, 2019, just a Wednesday. I can't recall what we were doing, only that the kids were playing in the beautiful sunshine of the afternoon, and I looked over to see my middle child dreaming in the sun. She was studying a leaf, or maybe a flower. She stayed like that long enough for me to try and get a good shot. One picture has the unmistakable curl of our dog's tail in the foreground. The next features the toddler, dressed in her hand-me-down ladybug Halloween costume, preparing for the following week's attempt at trick-or-treating, stomping away in a huff. I didn't want Viv to catch on that I was being Camera-Mom, so I grabbed a few more shots and went about my business. My phone shows that the weekend before that, we had gone on a mile-long hike along the river that backs our home. It was an adventure for all of us, parents included. We had snacks and backpacks, a stroller, more snacks, bug spray and sunscreen. The sunlight was so remarkable, and the leaves were at their height of color, so it was the perfect opportunity to grab family selfies. October 25th has us dancing in the living room, the girls dressed in matching t-shirts, singing and dancing together. On the 27th I recorded their frosting-smudged faces as they made jack-o-lantern Rice Krispy Treats. Then the photo roll skips to mid-November, then early December...Viv stopped wanting her picture taken once her hair started to fall out.
The hair thing doesn't start right away, it turns out. It took maybe a month before she was mostly bald. She has some strands of hair left, still, even 4 months later.Viv has long, shiny brown waves. It took years for her hair to really start to grow to begin with. She has the perfect little head and I always thought that if she ever fancies a pixie style cut, she should have no fear about pulling it off. She had her first haircut when she was five, that's how long it took for her hair to grow any substantial length. It broke my heart to tell her that it would all fall out, now that it was starting to achieve the glamorous length for which she had yearned. "It's just hair," we'd say to her, and to each other, day after day. This is a small price to pay for keeping her alive. When you look at it that way, of course it is. The hard part is, it's not the only price to pay. Sure, $5.00 is a small price to pay for a mortgage. It's only when you add in the other $1,459 does it become burdensome.
We are in the woods far too deeply at this point to begin to add up all the small prices she has paid, and will continue to pay. She was so excited to be something "scary" for Halloween, this year choosing to be a vampire. She was admitted to the hospital in the early hours of October 30th. Her stepfather lovingly packed up and delivered her vampire costume the next day, complete with plastic fangs, handmade (read: sloppily made) blood-red and rhinestone choker, and bright red lipstick that I had allowed her to purchase just for the occasion. The hospital staff assured us that they celebrate Halloween in a big way, and that it wasn't to be missed. Vivian couldn't walk or get out of bed on Halloween. She missed the celebration to try and sleep off the pain in her knee.
We made it home for Thanksgiving, though she didn't leave the house. She was still using a walker to get around. She had to skip the Christmas parade in which she had been selected to play the role of Becky Thatcher to her brother's Huck Finn in the town's Mark Twain themed float.
She hasn't been to school in 4 months. She missed her sister's 2nd birthday while in the hospital in February. She hasn't been to a store or a social event in same. The sum total of her social life boils down to her older brother begging her to play Minecraft with him, and watching other children play games in YouTube videos. Everyone else in her life is in scrubs. That's a small price to pay for her life, though. Surely it is. Surely.
The Tuesday after she was released from her first month in the hospital, the Tuesday that falls two days before Thanksgiving, we were back in the hospital for a long day of tests and surgery. She was slotted for a bone marrow biopsy, a mediport placement in her chest, removal of the pic line that had been in her armpit for 3 weeks, and an echocardiogram to check for blood clots. She was ordered not to eat after midnight. Her surgery didn't begin until about 2:30 in the afternoon. By the time they wheeled her down, we were all in tears. She'd been through more in one day than most of us would be able to stand. And her surgery was just starting. Waiting for her to come out of the operating room was one of the most excruciating experiences of my life. I wanted to both implode and climb the walls. I wanted to sleep forever, until it was over, not wake up until I was sure it was safe. Our waiting room chairs faced the doors to the pediatric palliative care unit. Small price to pay.
Overall she was super lucky and made it though most of the winter without having to be readmitted to the hospital. Her good luck streak ended January 27th, when, just as we were leaving after a long day in the outpatient clinic, her fever spiked remarkably. She became pale and started to shiver. There was nothing to do to warm her up, and it was clear that her body was battling an infection. While nurses and doctors made arrangements to admit her, I could do nothing. Nothing for my child except watch her tremble and cry. I was frozen with fear and all I could think about was you never realize what lengths you will go to for your child until you realize you are out of lengths. I knew right then that if I had to carry her across burning deserts to get her to safety, I would. If I had to forge rivers with her on my back, I would not think twice. I would enter any and every lifeboat for her and with her to keep her safe and make her well. Thank god for modern medicine. Thank Alexander Fleming for antibiotics. After 11 days we were sent home with steadily rising white blood cell counts and robust platelet numbers. And best of all, with her bone marrow tests showing no leukemia cells present. She was starting to do this, she was halfway through the first six month hellscape that is typical B-Cell A-L-L protocol. The price, the price that I wasn't paying, but instead, watching my daughter pay, was beginning to show returns. Every poke and re-poke with a needle into her mediport, every long drive to and from the hospital with a barf-bucket on her lap, every night sleeping behind a hospital curtain while nurses come and go on the hour, every missed holiday and class project, every CBC and every bone marrow biopsy, every strand of hair left on her pillowcase. We were finally getting close to that payoff-- remission.

Jeremy Bearimy

Where did it all begin, this time around? Where do I start this story, on this timeline? The Tuesday morning that, after a year or so of therapy where I worked hard to accept that the good things in my life are here to stay, and I don't need to live in constant fear that they will be taken from me at a moment's notice, when I stepped in the shower and thought "you know what? I think I will start to reframe my thinking. I can't sustain a life where I am constantly waiting for disaster to strike"? The Tuesday when I received a message from my daughter's teacher that my 6 year old's stiff knee was causing her so much pain that she couldn't walk off the school bus and suddenly everything was not ok? 
When I rushed her to walk-in hours at her pediatrician for those aches and intermittent fevers that had kept her out of school the week prior? 
Do I begin with those fevers, vomiting and subsequent ER trip where we were told, after a flu swab, that she was just "sick"?
 Do I start with her long, deer-like running stride in the back yard that had me convinced she was destined to become a stellar athlete, just the month before, an image I can't shake?
With the photo I took of her laying in the grass, dreamily contemplating a flower on a sunny late-fall afternoon, a week before our lives changed? 
Or with her father's death, five years ago, from testicular cancer? 
Does this story start when I got the "faint line is still a line" on the pregnancy test in 2012? The joy and, yes, surprise, when I realized I was going to have a second baby that I wasn't sure I was ready for? 
If you have ever watched the television show The Good Place, you're familiar with the episode where Michael describes how time works in the afterlife, and that when displayed visually, it looks like the name "Jeremy Bearimy" in cursive English. I can't point to where this story begins, as it has always been happening, or coming, and, at this point, feels like it never wasn't. It's our own Jeremy Bearimy, with the dot over the "i" being at once Tuesdays, and also July. And sometimes it's never. 
My kid has cancer.

After I pulled her off the bus, after I took her to the doctor, to get blood work done, after the doctor called us with the troublesome results of her labs and told us to get to the nearest children's hospital, after we spent hours in the emergency room, just waiting to be told what I already knew in my heart, after finally being assigned a room on the seventh floor, with the same view that her father's ICU room had, after falling asleep fully clothed from my contact lenses down to my shoes, I woke up in a chair. The room was dark, I didn't know where I was, or how long I had been asleep, but my brain was so quick to remind me "your kid has cancer." Just that one, echoing sentence as I got my bearings and remembered where I was. Cancer. She's six.

The next morning we met her doctor and he broke the news, again. It felt like maybe the 3rd or 4th time someone had told me Leukemia. B-Cell A-L-L. I'll never forget the nurse staying with me as I sobbed-- we would be in the hospital for a month. Treatment would be at least 2.5 years. Any parent would break down with this news, I am sure they were familiar with the scene. What they couldn't know, mostly because I couldn't speak though the sobs, was that I was crying not only from worry about her life. I know now and I knew then that we were in good hands. They couldn't possibly know that we had just, only a month earlier, passed the 5th anniversary of her father's death. And that our toddler at home was the exact same age as Vivian was when both of her parents disappeared from her life: her mother for days at a time to be with dad, and eventually, her father was gone forever. At 18 months, both of my daughters were forced to stop nursing, were suddenly left without their mother's care, for untold amounts of time. What a cruel way to start a life. And what a cruel way to revisit the anniversary of what had, up until that very moment, been my life's most defining trauma.
The smell of almond coffee flavoring fills the lobby of that hospital. For five years, when I smelled almonds, my stomach turned and I began to feel panic. Now, I lived in that smell. The hospital that I couldn't escape fast enough in 2014 was now my temporary home while I watched the treatments that couldn't save my husband attempt to save my daughter. Who, I kept reminding The Universe, is six. She's six and we have already done this once. Not only have we already done this once, but, in the grand scheme of things, we did this just the other day. 
Universe, I think you got our file mixed up with someone else's. We would like a hearing to challenge this finding. We object. Can we speak with the manager? Is there not some way out of this? Can you take me instead? Or...or or or, now hear me out...we just stop giving people cancer, like, at all. No more little babies or school aged kids. No more awkward teens and no more dads. Nobody's grandma and nobody's mom. No aunts, no uncles. No dogs, no cats. My Guinea Pig had it, for goodness sake. I mean, give it a rest.