The last few weeks have been nuts. I knew we wouldn't necessarily be "immune" to the physical impacts of COVID forever even as I was savoring the extra time at home not needing to commute. But right after my last post, Chris started feeling really ill. It started with unexplained fatigue and then rolled into chest tightness, shortness of breath, body aches, headache, and nausea. Some of those symptoms are textbook coronavirus... but on the other hand, he hasn't once had any kind of cough, and never once had a fever. The fever is being touted as such a trademark for the virus that we kept doubting whether that's what he was experiencing or not.
On May 6th, Chris left for work, but then came back an hour later saying he was exhausted and didn't think he should be out in public feeling like that. (He's an electrician so has continued working.) He slept all day and night, and wasn't interested in eating. The next morning, I was in a meeting when I got a phone call from him in the next room saying he needed help and thought he should see a doctor. He was so disoriented, in pain, and his chest felt very tight. He felt like he wasn't getting enough oxygen and I worried about his brain being affected.
We did a symptom checker and given that he was experiencing chest tightness and shortness of breath, it advised us to call an ambulance. They arrived within 10 minutes and took Chris to the hospital. They checked his vitals, which were luckily safe, did a covid test, and then I picked him up and brought him home. The relief when he called me to pick him up was immediate because I'd read so much about families not even having time to say goodbye to a loved one before they enter a hospital or ambulance and then they never see them again.
It was good to have him back home, but he didn't improve. He couldn't even sit up in a chair. The following week, the test covid came back negative and that concerned us more, even acknowledging that the false negative rate is high, the swab was taken very early in his symptoms, and he didn't have upper respiratory symptoms that could better trigger a positive.
Over the next three and a half weeks, he were in high alert. Neither of us left the house, nor did our roommates. Friends and family delivered us groceries. He quarantined in the little room where he works on music and I brought him all of his meals. I kept a digital "menu" of all of our groceries so he could tell me what sounded good, given that his appetite wavered. We wore a mask around each other at all times when I entered his room. I wore a mask around the apartment too in case I was exposing our two roommates to whatever he had. He sprayed the bathroom down every time he used it and brushed his teeth in his room, spitting into a trash can. We talked on the phone every night and tried to sync up movies or TV shows so we could watch them "together" from our separate rooms. Some days he was okay during those viewing periods, others he was really weak and could barely make it through the first few minutes. The only time I spent more than a minute in his room was during virtual appointments so that I could take notes and make sure he was asking all the questions we needed to cover.
A few days in, he had his first virtual call with his PCP. After two weeks with no improvement, he advised him to return to the ER and get another covid test, as well as a blood panel and chest X-ray. The ER staff denied everything but the blood panel and they told him that they "just didn't think he had covid" because his vitals were stable and he didn't have a fever. They sent him home within 30 minutes upon arriving. The blood panel was very broad and nothing turned up. Naturally, his PCP was upset that these services were denied and he advised that we find a private option for testing, so we eventually tracked down a covid testing site in Waltham at a CVS. The PCP scheduled an X-ray at his facility's onsite lab and later that afternoon he had the second covid test done. The chest X-ray came back clear and the covid test again came back negative. Who knows how much all of these hospital visits will end up costing with Chris's insurance. We haven't gotten any bills yet.
With the two negative covid results, his PCP had him come in for an in-person appointment. But before that could happen, Chris's symptoms got even worse. There was one night where I was worried he was having a heart attack. He felt like someone was sitting on his chest, which is exactly how my dad felt as he was having a heart attack. I almost brought him to the ER but as he weighed his options he started to feel better enough to sleep and our newly purchased blood oximeter showed normal readings. I slept on the floor next to his bed and checked on him every hour to make sure he was breathing. The next day, he was feeling a little better but really just not in crisis as much and after the previous night didn't want to take any chances, so we brought him to the ER for the third time. They did a full workup. EKG, another chest X-ray, blood test for clots, Lyme test, and some others. They gave him an IV with aspirin as a precaution. But again, everything came back clear and negative. They sent him home saying that maybe it was psychological and he should try exercise and meditation, and also made some comments about him coming to the ER three times in three weeks. While we knew this was because they couldn't find anything, given the state he was in with shortness of breath and chest pain, he could barely walk down the hall to use the toilet let alone go for a run. Not to mention his PCP had sent him to the ER the second time, the tests he'd ordered to get more answers had been denied, and assuming that their "it's not covid" assessment was correct, we had no way of knowing what was causing his chest pain, aches, and various other symptoms. How were we supposed to know if it wasn't something dangerous? Aren't you supposed to go to the ER when you have severe chest pain and pressure?
His PCP reviewed the test results at the in-person appointment the following week, and decided to schedule further tests after doing yet another EKG and not seeing anything abnormal. So on Friday, we went to the hospital for a CT and ultrasound. Both of those came back clear from what his PCP could tell, and now he has an appointment with a pulmonologist next week.
LUCKILY, within the last couple days he has really turned a corner. He has been making his own food, doing light chores, and walking. So our assumption now is that it was covid after all, and it just didn't show up on the two swab tests. If/when antibody tests become more available around here, I'd like for both of us to get one to better support that hypothesis. Because as much as I'd been social distancing and wearing a mask, it seems unlikely that I wouldn't also catch it and maybe just be asymptomatic. I was washing all of his dishes and laundry after all.
As if all of that wasn't enough, I have also been managing my own health issues. In March, I noticed a pink mark on my face next to my right eye. As a child I'd had a disease called Linear Scleroderma en coup de sabre, which caused hyperpigmentation and translucent skin on my right temple, as well as alopecia and a deep bone depression on my scalp. In college, a version of scleroderma reappeared on my side and back and again went into remission after 3 years. So when I saw some activity in the mark on my face, I started to worry. I checked the lesion on my side, and it appeared to be active as well. I monitored it for a couple months, hoping it was just a blip, but the signs didn't go away and the lesion on my side seemed to be progressing.
So taking stock of that fun development, just as Chris was getting sick, I was getting in contact with my pediatric rheumatologist from childhood, who has since retired, hoping he would have some recommendations on specialists in the Boston area. He responded quickly (and gracioulsy!) and I was able to secure a virtual appointment after some back and forth with his referral's office and making sure it was in-network with my insurance.
The concern at this point was not just that I could be sick again, but also that it might be active on my face again and en coup de sabre can cause neurological complications, even epilepsy. On top of that, scleroderma is an autoimmune disease and treatment involves immunosuppressants, and I have asthma, so both of those put me in the high risk bracket with a compromised immune system and breathing trouble. With my partner actively battling a likely case of COVID-19, it felt like terrible timing to say the least.
My doctor ended up having me go in for a lab test to explore diagnosis (scleroderma can cause specific abnormalities that show up in an SCL-70 and ANA test). This was the first time I left quarantine and it was very nerve wracking to be out in public after 2.5 weeks shut in the house. The tests came back negative, which is good because it does not point to more systematic forms of the disease that can cause organ and joint involvement. But the tests also have limited sensitivity and given the cosmetic signs on my skin, the diagnosis was fairly obvious. As such, as of two weeks ago, I'm now on mycophenolate (a medication that suppresses the immune system and is often given to organ recipients) and hydroxychloroquine, a disease modifying anti-rheumatic drug (same one that was being explored as a covid treatment and eventually proven otherwise). I'm at a half dose of mycophenolate right now, and assuming my biweekly labs continue to come back normal, will hopefully be at a full dose by early July. I'm relieved that I was able to start treatment quickly because the progress hasn't slowed down and I've even started to experience headaches. I've traditionally never gotten headaches, only a handful my entire life, so this development and the fact that the disease has changed the shape of my skull in the past is cause for concern. The doctor asked me to periodically photo document my scalp for changes over time, and if something looks or feels different, I'll have an MRI.
The med schedule is annoyingly finicky, mostly because when I'm supposed to eat/not eat is confusing, and one of the drugs needs to be taken 4 times daily. My last treatment therapy was much simpler: one 15mg methotrexate pill once per week. We discussed this, but apparently Brigham & Women's supports the myco/hydroxy combo for scleroderma more than methotrexate and have tracked better results. Which is interesting because as a 5-year-old I was originally on hydroxycholorquine until my specialist switched me to methotrexate for the same reason!
Once I'm on a full dose, a typical day will look something like this:
While all of this was bubbling up, I ultimately decided that I needed to take a step back from work. I started working 75% my normal schedule (30 hours/week) and I've found that I've really needed it. In normal circumstances, having an extra two hours a day would mean I have more time to draw, but I can tell I've needed it because I've spent most of that extra time just decompressing. There is a time and place to push myself but given that autoimmune diseases are exacerbated by stress, now is not the time. To add to everything, for the last month I've also been taking calls with job candidates in Tokyo starting at 6am twice a week; while also cooking and cleaning for Chris and myself and checking on him between every meeting and traveling to all of our various appointments and tests, work got to be too much.
That said, I have still been drawing even though my pace has slowed to about a half page every week instead of a full page. I've started posting content here since it was getting hard to follow on the blog.
I have some reflections on the Black Lives Matter movement that I will share next week, but wanted to get all of this personal context out of the way so I can move on. But for the record, I fully support the protests and riots, condemn the police, support reform and abolition (immediate reforms, with abolition as a longterm priority), and would be out protesting with my fellow citizens if it weren't for the new immunosuppressant + pandemic challenge. I'm finding other ways to support and donate while staying home!
This is the scene I mentioned earlier that is a flashback within a flashback (actually... within a flashback because the whole story exists in the memory of myself in 2016).
I'm still working on it, and might end up splitting the text of the last panel into another one, but hoping it comes across clearly.
This scene fits in with the central introduction of me as a child, pouting because of my own sensitivity. My grandpa happens to be telling my dad about how my mom learned to swim, and how at first she was afraid of the cold lake water. I'm hoping this will juxtapose well; I go from being really scared of fishing to alerting my whole family that an alligator is right near the dock. The goal is to show my childhood self through a similar growth in hardiness/courage, and how that was inspired by both my grandfather and my mother.
We'll see how it comes across once it's colored and inked!
It has been such a wonderful week at my parents' house. As you can see from all the photos below, the main attraction was my niece and goddaughter, who is the sweetest baby ever. She's always so happy and only cries when she is uncomfortable and needs to change positions, take a nap, or eat.
I arrived last Friday afternoon after a rainy, misty drive, and Juliette arrived with my brother and sister-in-law the following evening. JJ had some dinner, took some time to bang a wooden spoon on the table (provided by grandma), and then prepared for her nightly routine. This included a bath in the kitchen sink, pajamas and a fresh diaper, and bed. They have this big suit they put her in that makes her look like a marshmallow, but it prevents her from rolling in her sleep so she stays on her back.
The next day we mostly hung out with the baby and I (clearly) took as many photos as possible. I also took quite a few videos, particularly of her testing out a a goofy blubbery noise with her lips that was quite amusing. At one point we went back and forth making the sound and I was laughing so hard I could barely make the sound back.
On Christmas Eve, mom handled the cooking, and Juliette was passed around from lap to lap. My parents call this a "pass-around pack". We did a couple of small photo shoots, including one with the guinea pigs to compare to a similar pose of my brother with my parents' guinea pigs Jemima and Manfred. We took another of Juliette in my dad's old cap from when he was a baby, and another with a HESS truck (my brother was fond of those as a kid).
We opened Juliette's presents on Christmas Eve afternoon, before dinner, and at that point she was a little tuckered out and had just woken up from a nap. Then we had a traditional Ukrainian dinner of fish, pierogies, and mushroom soup while Juliette sat patiently on Andy's lap. From there, it was time for the Christmas Eve service at church; she got a kick out of the carols, and eventually fell right asleep, even as candles were passed around for the final hymns. My dad's congregation got a big kick out of her and it sounded like they had heard a lot about her and seen photos over the last six months.
On Christmas morning, the baby and family needed to head out to Buffalo where my sister-in-law's family lives, so we had a quick breakfast of French Toast Casserole (prepared to perfection by grandma), and then we packed up the car, the baby, and the dogs, and they were on their way. My parents and I stayed behind and exchanged the remaining gifts.
Since Christmas, I've been very sleepy and have been doing a lot of napping. It may not have been the most productive week of my life in terms of art, and I had been pinning a lot of high expectations to this week in terms of progress on my comic, but I think given that it was Christmas and I'm so rarely near my family, I made an exception and softened the pressure I was putting on myself. Next week it will be back to work again, but at least it will only be a three-day week.
This afternoon the Buffalo crowd swung through once more to pick up some remaining items and break up the trip back down to Long Island. Luckily, we'll be seeing everyone again in February for Juliette's baptism, so it wasn't as hard to say goodbye as it was the week she was born, or the weekend we babysat and weren't sure the next time we would see her. I'm just amazed by how quickly she is growing! Would it be selfish to extend a "free babysitter" offer every other month so I can spend some quality time with her?
Anyway, vacation is quickly coming to a close. Tomorrow we're going out to Friendly's for breakfast, then I'll make the drive to Boston. We are having a New Years Eve Eve party to celebrate our roommate Hardik who is moving to San Francisco in a couple weeks. But it will be nice to have a mellow New Years Eve and New Years Day to settle back into the groove. Happy 2019!
Check out this adorable Christmas gift from my sister-in-law and Juliette! A Christmas tree finger painted by Juliette and embellished by mom. Plus these post-crafting photos. It sounds like she enjoyed the painting, but not mom preventing her from putting her hands in her mouth, or being dirty afterward. I sense an artist in the making!
This weekend, Chris and I went out and got our first full-sized tree. This has been a dream of mine since I first moved in, though there was at least one year where I settled for decorated a floppy houseplant, and several with a four-foot tabletop tree.
Since moving out on my own, setting up holiday decorations has always made me feel closer to home. My mom always had an extravagant collection of humble-looking wooden Santa figures on the mantlepiece. Every year my brother helped my dad with the Christmas lights, and I sat and untangled the gold beads as my mom hung them in loops around the tree. On an afternoon that was free of precipitation and preferably above 40 degrees, my dad wrestled with white Christmas lights on our rhododendron and burning bushes, and a petit pine tree out front.
Decorating the tree was a family affair, usually done in front of Peanuts Christmas and The Grinch Who Stole Christmas, both recorded on a VHS tape from an airing on cable in the very early 90s. Closer to the holiday, we would watch The Snowman and drink hot cocoa.
Our tree never had a theme, but rather it was made up of heirloom type ornaments that hinted at our various interests. We had three mini carousel ornaments; one could even be hooked up to a Christmas light socket, causing it to slowly rotate with a quiet "bzzzzz". The carousels all connected to our upbringing in Broome County, NY, the carousel capital of the world.
There were plenty of book-related ornaments, some made of glass, others of wood or metal, representing my parents' careers as librarians. I was always partial to a brown-haired angel in a light pink dress, mostly because it was pink and sparkly. It was one of those delicate frosted glass ornaments that need to be packed in wads of tissue paper, and I usually hung it on a lower branch along with about 15 other ornaments that my parents covertly redistributed over the course of the evening.
There are little Victorian house ornaments whose windows are illuminated by a planted light, reflecting my parents' interest in history and architecture. Here and there are golden ornaments from the annual White House collection, which my cousin Jackie sent periodically while she was working in the FBI. For a while, there was a light-up Starship Enterprise because of my mom's obsession with Star Trek, and later we added a Zeppelin, referencing Randy from A Christmas Story shouting "It's a Zeppelin!" on Christmas morning.
As a kid, we added an assortment of Harry Potter and American Girl Doll ornaments to celebrate the younger generation, and a significant collection of basset hound ornaments to celebrate our family dog. Most of the former have been passed back to me to hang on my own tree, partially so I have things to hang, but also because my parents have more ornaments than they can fit on the two trees that they usually install. There have also been some recent additions of Big Ben and the Eiffel Tower to celebrate trips to Europe.
Over the last few years, my mom has started making ornaments out of her pysanky, and she creates a new design for each year. The first one that I received broke after a tragic hammer related incident, and I keep the other two very safe when not displayed.
Chris and I have also started growing our own collection, including a large blown glass orb from his mom, a ceramic BB-8, and a Tom Brady. While I don't have any Santa figures, I do have some glass snowmen and little trees and pine cones that I decorate with twinkle lights. My parents also gave me a small wintery vignette made of wood with built in lights, which they found in Rothenburg, Germany (a walled town tracing back to medieval times).
They say that nostalgia does not mean living in the past, but bringing the past forward. I like to think that by continuing to decorate my tree with old and new ornaments, I'm bringing forward a lifelong tradition into other parts of my life, while also creating slightly varied traditions in my own household.
After finishing decorating the tree, my family would sit together and play a round of "I spy with my little eye...." while calling out specific characteristics of an ornament on the tree. The only light would be from the colored lights of the tree, which reflected in our eyes as we admired our work. I'm looking forward to having a rich enough selection of ornaments to keep the "I spy" game going in the years to come.
I got this mug during my return to Alfred last spring; my memory card had just failed right after I had finished documenting a painting of mine that I stumbled upon in one of the administrative offices. I was really excited to see it, so figures that I didn't end up getting a photo of it. By the time I realized there was a glitch, the offices were closed, so instead I wandered around the book store looking for a replacement and getting nostalgic, wondering why I had never stocked up on school memorabilia before (answer: I was an existing student and was poor). I got a couple of t-shirts and this rather simple cup. I'm not really a coffee drinker, but every now and then I will have half a cup to avoid falling prey to dangerous weekend nap impulses.
Here are a couple of photo updates on the comic I've been chugging away on. I haven't shared much about it in writing because I am still figuring out where I want to take it (though I do have a lot of storyboarding done, and have a growing set of Google documents that include a story framework and various thoughts, ideas, and memories). That said, I have very little time to work on this project with my full-time work schedule, not to mention 2 hours of commuting every day. But I'm still trying to chip away on the weekends for now, even if each set of week days seems to negate my weekend momentum.
I recently listened to a really wonderful interview with Debbie Tung (creator of "Quiet Girl in a Noisy World"), hosted by The Introvert, Dear Podcast. She talked about the struggles of choosing to quit her full-time job as a developer and pursue art full-time instead; they asked her if she recommends this choice to other artists out there, and she was hesitant to encourage that choice because it makes life quite hard economically. Not to mention, Debbie lives in the UK, so there are not the same concerns about student loan debt and access to healthcare. Here in Boston, it's almost impossible to afford rent even with full-time work - not to mention a mortgage (condos around here typically start around 400k, and houses are basically inaccessible unless you are up for paying 600k or more). I sometimes daydream about moving out to the country into a little cottage, where I can be alone with my brushes and pens and enjoy an uninterrupted creative process, but it's something I'm far too anxious to pursue in this stage of my life. Right now, I have health and dental care through work, a 401k, and a stable paycheck, which is a lot more than I had working in retail. Plus, comics are very hard to make a living off of unless you have proven success through a book deal. It's not the same as running an Etsy or doing commissions, which I take here and there but don't actively pursue or advertise. For now, I'll continue to cherish my free time and continue my work during the week.
Hannah Dunscombe is a painter and portrait artist based out of Mansfield, MA.