My poor timing is a running joke among my family and friends. My original surgery date was March 25th. As I watched the pandemic begin to unfold in the US on my birthday (now known as Black Thursday), I had a gut feeling that once again fate had other plans. I was soon proven right, and ended up having the procedure 4 months later than scheduled, on July 29th. I went in with a mantra: I’m a bad ass bitch and I can do this.
My surgery took about three hours longer than it was supposed to. The neurosurgeon discovered that I had a hyper-vascularized dura (like that of a child) which meant I was much more vulnerable to bleeding out than a typical 20 something. His words to my mother were “I had to do all these techniques with fancy French names that won’t make a difference to you, but it took a lot longer than I had planned.”
The first thing I remember after waking up was being in the worst pain of my life and trying to scream—but being voiceless. Later, I heard the nurses on the other side of my curtain talking about something that had happened to me after surgery. I still don’t know the details, those early memories are incredibly blurry. I just remember that first night in the ICU it felt like days, not hours, were passing. I’d been given a morphine pump, but was delirious enough that I wasn’t aware of it. I don’t think, in my state, I could’ve even found it among all the equipment I was hooked up to. So the pain was bad. But the ICU day nurse, Naomi, was warm and matter of fact—exactly what I needed.
When I moved to the med/surgery floor, I didn’t realize I was being sent to any available adult bed instead of a section dedicated to neuro patients. I was surrounded on all sides by joint replacement ortho cases. My neighboring patient screamed at all hours of the day.
Before my procedure, I had read a lot of people’s post-op experiences when they were on my neurosurgeon’s service. It is clear to me that the care pre and post Covid has been drastically different. I’m not entirely sure why. I don’t know if it is staffing or burn out or struggling to find normals with a backlog of elective procedures. I have a lot of compassion for my surgeon, his team, and the hospital—they’re trying to deal with an impossible situation. But there were definitely things that were overlooked that meant I didn’t do as well post-op as I might have six months previously. One nurse told me not to take an important medication my neurosurgeon had prescribed, another left me on the floor of the toilet for 30 minutes and subsequently forgot to give me my pain meds.
I wasn’t in a state to advocate for myself, so in order for me to get the care I needed, it became clear my mom would need to be authorized to stay with me in my hospital room. This proved to be complicated because of rapidly shifting protocols about hospital visitors and the ongoing rules of the New York Department of Health. At one point, my mom was told that she wouldn’t even be allowed to visit me because she hadn’t quarantined a full 14 days, even though she had just tested negative for Covid. Eventually, however, she was put on the exceptions list and more or less moved into my room. They didn’t have a place for her to sleep properly and she didn’t get a blanket until her second night. But things got better for me after that. It felt like holding her hand was the only thing tethering me to the world. And whenever I woke up and didn’t know where I was or what had happened, I would look over and see her in a chair in the corner and know that it was alright.
As you might expect, the mood swings after brain surgery can be quite intense. I remember at one point, I opened my tablet and saw a video of a mama hippo and her new baby at the top of my page. Partway through watching it, the page reloaded and it vanished to somewhere further down the feed. I’m not exaggerating when I say it suddenly felt like my heart had been pulled out of my chest and there was no longer anything in the world left to live for. It was definitely a roller coaster. I spent most of my time sleeping or staring at the ceiling, trying to wade through the pain and confusion. Videos from Jess and my sister Allyson helped.
I did encounter some truly lovely nurses, LPNs, and patient techs. It was important to me that, once I was sufficiently conscious and aware, I learned everyone’s names. Maria, Alfred, Ayisha, and Jack were standouts. They helped me feel human, and that is everything.
I could go into further detail, but I think you get the gist. That first week post-op is certainly among the worst of my life and dealing with it has been and will continue to be a process. Thankfully, since I’ve experienced it before, I know how to recognize the effects of medical trauma and have developed ways of managing.
Physical recovery is going to take a long time too. I’ve already seen how hard it is for other people to understand just how slow this progression is going to be... So let’s just say you won’t see me on a treadmill any time soon. 😉 Right now I am working on neck exercises and trying to spend a little more time with my feet on the floor while I sit. Working on this blog has been my primary mental exercise, along with some word puzzles and nonograms.
Hope for recovery has been tentatively bubbling up in my chest, the strongest I’ve experienced since I became ill. I’m not going to lie, after everything that’s happened, that hope feels pretty foreboding. I’ve adapted to my situation by shutting out any health-related optimism or looking forward to anything that could fall apart (which is basically everything). It may not be the best coping mechanism, but it has spared me a lot of pain as, time after time, things haven’t worked out. I’m trying to open myself more to that hope now. We’ll see how it goes.
Next up: surgery from my mother’s perspective...
