I wrote recently about how my childhood illness, scleroderma, has come out of remission and I just started treatment. Something I've been existentially grappling with is that one arm of the disease is systemic and can affect the joints, leading to mobility issues. I don't have any of the tell-tail signs of that part of the disease (Raynaud's phenomenon, joint tightness and pain, calcium deposits, widened blood vessels, or esophageal dysfunction), though my fingers have occasionally been sensitive to cold in the last couple weeks and I did notice this weekend that both of my thumbs and index fingertips have suddenly developed rough and peeling callouses. I can't pinpoint where they would have come from since I haven't even been drawing much in the last week (and obviously not with my non-dominant hand) and haven't come in contact with any irritative cleaning products. I'm not washing my hands anymore than I normally do in these times and the rest of my hands are unaffected. Peeling and irritation of the fingers and hands is one symptom of the wider spread disease, which I've seen crop up frequently in an online scleroderma support group. Many who suffer it eventually lose the ability to write clearly, or completely lose any skill involving fine motor skills. The prospect of losing mobility in my hands has sent me into an (unhelpful) panic and the last three nights I've had nightmares about the disease progressing both neurologically and digitally. In one, my parietal bone cracked open as if it was a set of tectonic plates with one crashing over the other, and I could feel blood coming out of the resulting fissure. In another, I watched the color drain from my fingers when I held something cold and felt all of my fears confirmed.
I'm trying to not fall into the trap of believing every little ache and pain is a symptom. But I'm also grappling with the reality that time is a limited resource. I spoke with a friend yesterday about how much I am holding myself to the expectation that I should be drawing all of the time, otherwise I will never make significant progress when I go back to working full-time and commuting into work every day. She reminded me that we are living in troubled times, made up of violence, a social justice movement spurring necessary pain and self-reflection and learning, the ongoing pandemic, and a personal illness whose treatment puts me at higher risk of the coronavirus; it's not healthy to put additional pressure on myself. But at the same time, I worry that a couple years from now I will no longer be able to draw and I will lament the days I wasted when I still could. The only way to make myself feel better is to keep working hard, but at the same time, I don't want the drawing itself to be a source of stress. Stress doesn't result in good work and it doesn't exactly slow down autoimmune diseases.
Anyway, that's just a little bit of where my head is at this week. I'm still chipping away at the comic. I just don't have my head in the game like I did back in March and April.
I heard about a small bright spot coming out of the Cambridge community this week: Danielle Geathers just became the first black woman to serve as Student Body President at MIT. In the article linked above she reflects on the importance of prospective students seeing their own culture and background reflected in the student and staff community - especially in leadership positions.
The Greater Boston community has a long way to go though. I work in an MIT-owned building in Kendall Square, a Cambridge neighborhood and business community often criticized as an ivory tower exponentially driving up property prices and rent largely due to the presence of Google, Facebook, Amazon, plenty of biopharma companies, and more. My company’s main function is to provide affordable and flexible workspace and accessible networking opportunities for startups and innovators, in an otherwise expensive, exclusive, and densely occupied business neighborhood. But, as the price of rent continues to sky rocket, the company ends up having to charge more per square foot just to cover our own rent, which works in direct opposition to the goal of accessibility and affordability. (Note, we offer free events and donate space to/partner with various community-oriented initiatives and nonprofit orgs, but this is obviously not enough to fix the issue of inaccessibility overall.)
With the current exclusivity in our neighborhood in mind, last year, the Kendall Square Association kicked off a monthly Diversity, Equity, and Inclusion learning community bringing together local KS business leaders. The focus of this discussion group was "Can Kendall Square pilot and scale ways of building inclusive institutions, by applying its [Research & Development] mindset to the diversity, equity, and inclusion (DEI) issue?"
Since that group started, it sounds like there has been a lot of openness to accountability and self-criticism and lots of thoughtful ideas for future changes and initiatives to support the goal of making KS a more equitable and inclusive community. But of course there is still a lot of work to be done and a lot of those ideas are far from being rolled out. (Read more on the KSA DEIB initiative here.)
Because it’s easy to point to everyone else and whether they are/are not doing enough, I’m trying to turn the mirror on myself as a cog within the greater Kendall Square wheel. My big questions for myself within this context are:
1. What can I do as a member of a Talent Acquisition team in a Kendall Square business to make sure I am helping create a company that provides a welcoming, safe, worthwhile, and engaging community for existing and prospective BIPOC staff?
2. How can I work with my company to bring more BIPOC into positions of leadership and other parts of our work that are not accurately reflecting the community and population within which we operate?
Given that my team works in hiring and HR, DEIB (Diversity, Equity, Inclusion, Belonging) naturally surfaces in our work every day and it's something we always address up front when hiring for the Talent Acquisition department. But I am challenging myself with the questions above because my professional identity has always felt secondary to me; I've often felt like my individual identity is that I like to make art and that my professional day job is a way to pay the bills while I also work on creative things during my free time. But I'm recognizing that with my line of work, that's a place where I can make a tangible impact in the Black Lives Matter movement.
Here's some sobering context: Boston was recently voted last in a survey on how welcoming eight major US cities are to people of color. Last. In a region of the world know for being extremely progressive and liberal. On average, I interview anywhere between 5 and 25 people every week, have worked on entry-level to C-level searches, and my team reviews hundreds of resumes and applications from all over the world each month. We are responsible for finding valuable contributors who reflect the fabric of the community around us. And right now, we have a number of ongoing initiatives to keep ourselves accountable... but we are continuing to listen and learn and admit where we can do better.
Layla F. Saad held an Instagram Live lecture on the topic yesterday, titled "The Revolution with not be Colonised... by White Business Leaders" and this has been a nice resource to make sure I am pointing the finger back at myself and my company whenever I think about racism. She reminds me that it is a shield to simply call out others who are not doing enough when the most effective calling out should be happening within myself and my immediate sphere. View Layla's full session here.
Some helpful words written and emphasized by Layla that white business people like myself should keep in mind:
“The revolution will not be businesses, brands, and leaders who have silenced black voices for all these years, only now to post a black square and proclaim “Black Lives Matter”. The revolution will not be white-washed into a movement where people with white privilege get to feel like benevolent white saviors once again. The revolution will not be slotted into capitalism and used to sell white supremacy back to us.”
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!
Hannah Dunscombe is a painter and portrait artist based out of Mansfield, MA.