Falling asleep in incredibly difficult for me these days. Once I get to sleep, I’m fine, but getting there–oof. There are nights it takes me 3 hours to get to sleep.
One of the things I do as I toss and turn in bed, trying to get comfortable, trying to turn off my anxiety, is compose elaborate blog posts and essays which never get written. Except for this one.
Three years ago today a gallstone got stuck in my pancreatobiliary duct and changed the course of my life forever. When I emerged from the hospital three months later, I thought that I would eventually recover. That has not been the case.
In the last three years, I have been hospitalized 18 times and have had 56 procedures, both in-patient and out-patient. So far this year, I have had 50 different appointments with doctors and other medical providers. I’ve been to LabCorp more times than I’d like to count.
Approximately every two weeks a doctor sticks a 3″ needle into my belly before inserting a catheter to drain fluid into a large plastic jug. So far this year, I’ve had 56.5 liters drained. Each time, it gets a little more difficult for me to tolerate. Some doctors have better hands than others; when I get my favorite doctor in that department, I know it will be fine because we’ll chat about books until he’s done (he asked me how he could stuff the ballot box for the Hugos this past week; I told him he’d have to buy a lot of memberships to do that).
Let me use a picture to explain why things have been so difficult for me:
Do you see the bottom right corner–the one with the walled-off pancreatic necrosis? That’s me. It is literally the worst possible outcome and I feel that I’m very lucky to be alive. The doctors call it a “difficult course of necrotizing pancreatitis.” I call it hell on earth.
Right now, the goal of my treatment is to keep me stable and hopefully get me to a point where I can have surgery to remove my gallbladder, spleen, and repair my umbilical hernia. That’s not looking very likely, though, and I’ve been working to come to terms with the fact that where I am now may be as good as it gets. That’s been really hard to come to terms with.
And then there’s the other thing I’ve lost, more recently. My career.
I used to love my job–both the people I worked with and for and the actual work itself. And then I got a manager who alternately gaslit and love-bombed me and who isolated me from other members of my team. Every time I tried to tell her that I wasn’t getting information I needed, she made excuses. Every time I told her my workload was too much, she gave me another special project. She claimed that she was committed to my success and then she kneecapped me at my last annual review by telling me that I was unreliable and inconsistent. And once I was in a vulnerable position, it was easy for the company to eliminate my position. There were other layoffs that happened at the same time, but almost all the other people affected were in positions much senior to mine both in level and years of service.
So that’s been a big change. For the last six months, I’ve been trying to figure out who I am without my career. It’s been incredibly difficult. But it’s also clear that my job–in its final, abusive and toxic state–was making me sick. I haven’t been hospitalized since the beginning of February. I’m feeling stronger and more able to get by on a daily basis. I’ve really been able to focus on the quality of each day, not just getting through each day and praying for the weekend.
Dealing with loss and trauma is really hard and I don’t like it.
I try to journal regularly and shortly after I start each new notebook, a theme emerges. My current journal’s theme is about loss and being lost and learning the new landscape of my life. John M. Ford’s “Against Entropy” and Elizabeth Bishop’s “One Art” also feature prominently. And random bits of Yeats, but there’s always random bits of Yeats in my journals. Oh, and Marissa Lingen’s “Flow,” which is one of my very favorite short stories.
Much of my anger has subsided, leaving behind what I envision to be a large dark room with a very small box in the center. This box is very dense and it is leaking, its sides bowed from what’s inside. And every so often, I go look at the box and am overcome with feelings I don’t know how to process.
My therapist says that I’m finally finding my way to grieve for everything I’ve lost. For the past three years, I’ve been so focused on survival and on work that there hasn’t been space for grief. I don’t know how to grieve. In the past, I’ve been able to shove the emotions away and pretend they aren’t there. And now, there are too many of them and I don’t have much choice except to deal with them.
And it’s hard. It’s so hard. I want my old life back in the most desperate sort of way. And that’s not going to happen.
So now I have to keep moving forward, charting my progress, one day at a time.