The art of losing isn’t hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster.
Four years ago today, I almost died.
And while I didn’t lose my life, I have had to master the art of losing nonetheless.
The first thing I lost was my health. I’d been almost rudely healthy up to that point. I’d never been seriously sick beyond a couple of bouts of flu in my 20’s. I had the occasional migraine and I’d generally get a cold or three in the winter, but in terms of physical illness, not much beyond the time I broke my wrist when I was 9.
So dealing with a sudden onset situation that I didn’t understand beyond “you have gallstone pancreatitis but it should clear up pretty soon.” Spoiler: it did not. It was 3 months before it was “cleared up” and during that three months my pancreas decided it would be fun to digest itself. This is really really really painful. And I wasn’t getting enough pain medication.1
All the complications that Johns Hopkins lists for pancreatitis? I had all of them.
And my medical team was composed of a bunch of surgical residents whose attending wasn’t supervising them properly. They discharged me multiple times when they should not; one time sending me home with 55 pounds of fluid and telling me that it would “resolve on its own” and spoiler: it did not. It put me into renal failure.
It was only when my GI doctor came on the scene about two months into my illness that things started to change. He or someone from his office came by every day during daylight hours to talk to me and let me know what the plan was. He removed a 15 cm section of dead pancreas endoscopically–and that was what really helped me to turn the corner and get well enough to be discharged.
Anyhow. Necrotizing pancreatitis is incredibly painful and I wouldn’t wish it on my worst enemy. I take 13 different medications on a daily basis and they’re all essential to my continued existence on the plane of the living. I have eight different doctors that I see on a regular basis and all the required medical tests that go along with that. Between July 2018 and February 2021, I was hospitalized 18 times and most of those times were for at least a week.
Since I really don’t have a pancreas anymore, I’m also on the diabetes merry-go-round,2 which so far has involved a Durable Medical Equipment supplier (DME) sitting on the order for my insulin pump for five months because they needed me to sign the financial responsibility form–except they weren’t actually telling me that, they were telling me that they needed my insurance to provide a form that didn’t exist. I had to get a healthcare advocate involved to resolve the situation. I’ve had to call my mail order pharmacy multiple times to try to get them to send me my insulin. I had a different DME demand a $700 up-front payment when I changed insurance because they didn’t take down the correct information when they validated my insurance and decided that I hadn’t fulfilled any of my deductible yet.
I am still not resigned to the loss of my health, even though I know that my current level of wellness is about as good as it’s going to get.
Then there was my career. When I got sick, my career was on the upswing: I was a recognized expert throughout the company in my specific niche, I was on a team that was developing the process for the spin-off company I was slated to go to, and things were just really, really good.
I returned to work in November 2018 and for the next year, I worked to get back to full capacity. In September of 2019, I was transferred to a new manager, someone who had previously been a peer. I thought things would be fine.
Then came my performance review for 2019, which she somehow managed to hijack despite only being my manager for one month when I turned in my self-evaluation. She somehow managed to steamroll my former manager–he was obviously pretty mad about it–and somehow managed to give me the lowest possible performance rating but didn’t put any of the Serious Problems in writing and got around putting me on a PIP.
Let me put it this way: the two years before I got sick, I’d gotten the highest possible performance review which was unheard of, so to go from that to the lowest in literally two years should have raised a bunch of flags with HR, but it didn’t.
My manager told me that 2020 would be a “reset” year for me and I was fool enough to believe her.
In February 2020, I went to the on-site nurse with the paperwork from my doctors for ADA accommodations. My manager was notified and she was able to convene a shadow HR process called a “Medical Review Board” in which my need to work 2 days a week from home so I could conserve my energy for actually working instead of commuting was denied. At the time, there were three people in my role under this manager. One of them was a full time work from home employee in Canada. I am on the East Coast, and the other was in Iowa, at the same location as our manager. There was literally no need for me to be in the office except for the one in person meeting I had with IT each month.
On February 27, 2020, I was told that I was being put on indefinite disability leave because my accommodations were an undue burden on the business. They essentially read the paperwork with the worst possible interpretation and did not look at how I’d been using my FMLA time outside of hospitalizations–I was averaging 11 hours a month, which was not excessive. We all know what happened two weeks later–everyone who could was working from home.
And none of this was put in writing. So when I went to my doctors to ask them to revise my accommodations, it looked like I initiated the change. I think, at this point, my manager was hoping I’d go out permanently on long term disability.
Instead, I was back to work by the beginning of April. And I started documenting everything I was doing to achieve my goals. I was color coding every single hour I was working so I could show that I was actually working.
I thought things were holding together and that I was making good progress–and that’s what my manager was telling me while at the same time she was telling me that I couldn’t have a monthly call with a peer to talk about instructional design, even though I was going to be responsible for writing a lot of technical documentation in 2021.
I was also doing the main part of my job, despite significant barriers around getting the data I needed because instead of letting me be in charge of the reconciliation from beginning to end, she made me rely on my two colleagues who were always late or revising numbers from previous months.
Every time I told our manager that they were consistently putting me in a position where I was re-doing work multiple times, she emphasized how busy they were.
Every time I told her how difficult I was finding my workload, she would laugh and tell me hers was worse and then about a week later she’d find another special project to dump in my lap.
I stopped mentioning it to her. I also stopped taking lunch breaks.
I was hospitalized three times between late September and mid-December for sepsis. Specifically, I had a bacterial infection in my blood. That’s incredibly serious. Me being out was a serious problem for my manager, as my two colleagues didn’t even try to pick up any of my tasks, even though I covered for them when they took vacations.
So when review time rolled around again, despite the eight pages of accomplishments, she rated me as low as possible again. And again, didn’t provide any sort of substantive critique in writing. If my work was so poor all year long, why wasn’t I on a PIP? Why were there no written reprimands in my record?
And then she lied to my face about this making me vulnerable if layoffs were to happen. I was laid off a week later as part of a mass layoff, where nearly everyone else who was laid off was at least 10 years older than me and had at least 15 years of service more than I did and were making a lot more money.
She gaslit me, she isolated me, she shifted the goalposts, she made constant appeals to authority, and the result was that she not only destroyed the reputation I’d spent most of two decades building but also my confidence in my own competence.
I should have seen that I was enmeshed in a sick system, but I didn’t. And it took me most of last year to dig myself out of the hole I found myself in.
Last year’s Hugo season and the aftermath was incredibly difficult, especially as it happened as I was in the middle of grieving both my health and career loss.
I was a finalist because I wrote an essay that used Very Strong Language to call out a Venerable and Wealthy Older White Man for making the Hugo ceremony in 2020 about himself and how great things used to be instead of calling attention to the incredible slate of finalists and their accomplishments. And people put it on their nominating ballots.
There was a segment of fandom that thought my essay had caused this Venerable Personage to cancel his plans to attend Worldcon in 2021 (not likely, his next book is like decades overdue at this point) and that was Very Bad. There was also some folks having the vapors over whether or not my nomination was a violation of the convention’s Code of Conduct (it wasn’t) to the point where they decided to try to drop the internet on my head.
And that would have been dealable, it truly would have, as the main actors where already people I knew to be assholes of the highest order.
It’s what happened after the Hugo ceremony that did me in.
A large multinational company that has made a lot of things was the sponsor of the Red Carpet and there was a branded backdrop and a logo in the program book at the awards ceremony and they were thanked at the end of the ceremony along with the other sponsors.
One of the things this company makes is missiles and drones. And they also help make various NASA programs happen. A lot of multinationals operate in different markets with products that both benefit and harm humanity. I made the mistake of mentioning on Twitter that one of my partners works at this multinational as part of a conversation between myself and two other people–in other words, I didn’t just bust out with it on my timeline, it was buried in replies and wouldn’t have been surfaced by the algorithm for most folks.
Folks looking to gain a bit of clout were doing indiscriminate searches for the name of the company and found my tweet and well, context collapsed on me. I found myself under siege by the same group of individuals who brigaded another writer off Twitter in December 2021. I found my words being quoted derisively in a podcast that claimed to be about a non-existent trend they’d noticed in SFF and calling out two prominent and Very Online White Male SFF Writers as the problem when really they were using the non-existent trend and the engagement they knew they’d get from at least one of the writers mentioned by name as cover to continue to harass me.
And no one stood up for me.
Okay, that isn’t exactly true: other fans stood up for me. But in terms of platform and reach, all the people with those things–people who I’ve attended conventions with, broken bread with, paneled with–none of them said anything. For the most part, they didn’t even notice that I was being harassed because the entire discussion was dominated by how stupid their non-existent trend is.
And my heart broke into a million pieces when I realized how invisible I was because I was merely a fan. And as everyone knows, we’re fungible .
I am here. I am alive. I am filling in the holes in my life (and getting new holes in my head).
And yet: I have so far to go–
the art of losing’s not too hard to master
though it may look like (Write it!) like disaster.
The hospital I was in has a policy of not actively offering pain medication. You have to ask for it. They’re supposed to write on the patient info board when your last dose was, but that doesn’t happen. So I spent a lot of time in excruciating pain. Because, like, I was barely capable of talking for the first month I was sick because I’d had a fucking stroke and they were expecting me to be able to tell time? ↩︎