Things I learned in 2020 (a late reflection)

medical trauma

I know, I know, it's almost February already. I'm late to the party in terms of 2020 reflections.

Part of the reason I'm late is because I've hesitated to share anything about 2020 at all. It was a year of collective trauma and talking about how I've survived doesn't feel quite right considering how many people did not. My survival wasn't due to any sort of moral virtue. And yet, surviving last year does feel like an accomplishment. I suspect surviving this year—assuming I do—will feel like one as well.

I've also hesitated to share because, while the Biden/Harris administration does give me hope (and also some pause), the pandemic is still raging, the virus is more transmissible than ever, and a lot of people are still dying.

But I am writing and sharing this anyway because everything is multiple things at once and I learned so much in 2020. It was personally the biggest year of change I've had in my 30 years, even outside of pandemic-related changes. The person I am today is different than the person I was a year ago. I want to recognize how I've adapted and grown. I want to place a digital marker in the ground to remember it. So I did the thing that you do when you have a website and a blog that you sometimes post things on: I made a list.

In 2020, I learned:

What my "worst imaginable pain" is.

In March, I developed an abdominal cavity infection as a complication of my tube placement. It was painful. Multiple doses of dilaudid and fentanyl did nothing for it. As a person with chronic illness, I've been asked to rate my pain on a scale of 1–10 so many times over the years. I never knew what 10/10 pain was for me. I do now.

Dying doesn't necessarily feel any different than living.

This sounds dramatic. I wouldn't say I'm dying now or anything, but I would have died without having my tube placed. It is weird to say that and also it's true. Before my feeding tube, each day felt like any other day. Perhaps that means I wasn't actually dying. Or perhaps it means that steady deterioration had become increasingly my normal.

People love me more than I know.

There were a few moments in the last year when people said incredibly kind things I didn't know they felt.

Being loved doesn't mean people show up for you.

I suspect it's because maybe people don't know how to show up for me. I don't know what to tell them. I don't know that love without support—or even basic presence—is enough. Is it love at all?

I've often just assumed my expectations are too high, that I should cut people more slack because it's hard and uncomfortable to be friends with someone so sick. And yet there are people who do show up, who repeatedly make space for me and all of my illness despite their discomfort, who are honest when they don't know what to say.

Doctors work for me.

I don't have to put up with their abuse. If I have a shitty doctor, I can fire them and find a new one. There are people out there that call this "doctor shopping" and suggest that ill patients who find other doctors are just looking for someone to tell them what they want to hear. I think doctor shopping is good, actually. Because so many doctors aren't very good and refuse to believe we are actually sick. We deserve to be believed. We deserve to have knowledgable doctors. We deserve to have access to treatment.

Taking medications to manage my symptoms doesn't make me a failure.

Suffering through pain, nausea, and discomfort isn't noble. It's misery. I deserve relief, even if it's minor.

Choosing to seek medical care is choosing to try to live.

I chose to try to live when I had my feeding tube placed. I chose to try to live when I went to the ER those times when the pain was terrible and I didn't know why. I chose to try to live through each uncomfortable procedure and test. It was not always an easy choice.

To unapologetically ask for what I need.

I don't need to apologize for asking my spouse if he can get me the thing I left in the other room because it's very hard to wheel my IV pole over there and carry a thing back. I don't need to apologize for asking my colleagues to not schedule meetings over a specific block of time because I need uninterrupted time to focus on a project. I don't need to apologize to my doctor for bugging them for the third time in a couple of weeks because something seems weird or wrong with my feeding tube. Over time, I have been taught that I am a burden. I have learned to apologize for it. It's past time I unlearned it.

I am grateful to know all of these things now. I am not grateful I had to learn them. I suspect in the rest of 2021 I will continue to learn things I will be grateful to know but not to learn. Maybe that's just a part of life.

There are things I'm hoping to learn this year, though.

I'm hoping to learn to love myself and my body more, which is not an easy task when it's constantly in pain. I'm hoping to learn to understand what my body needs. I've always been good at listening to it, but these days it often feels like it's speaking a completely new language. Even 10 months after this tube was placed, I still feel new pains, new discomforts, and new sensations.

These aren't easy tasks. I suspect the year will bring additional challenges that'll make them all the more complicated. But I'm hoping I can make some headway. And I'm hopeful that if I do, I'll start to feel a bit more human—whatever that means. I'm hopeful I'll start to feel more alive. Only time will tell.