I don't need to arrive at a lesson after every traumatic event.

i had three emergency brain surgeries

Image Description: An illustration I drew of an abstracted character flying in a sky surrounded by floating faces. The abstract character has their hands lifted toward a hole in the sky, where they are entering into. The hole has stars and circles in it, acting almost as if it’s a portal for the flying character. Some stars are on the character, as well as a large face whose eyes are closed. There is an eye on each one of the two hands of the flying character, they are both open eyes. The text in the illustration is handwritten and reads “I Don’t Need to Arrive at a Lesson after every traumatic event that occurs”

TW: mentions of surgery, medical trauma, and bodily fluids

Image Description: a photograph of my partner and I at the hospital. We are both non-binary white people, my partner has long hair, and I have shorter hair. I’m wearing a bandage across my head, and my partner is standing next to me, lying down on the hospital bed. I’m giving a smug uncomfortable look at the camera.

I had emergency brain surgery on Wednesday. That feels pretty freaky to say publicly or share. The hesitancy to share still lingers as I work to advocate for myself and my needs during recovery. My mom and my partner were both with me at the hospital; I’ve been feeling dazed and have been heavily resting these last several days. There’s always art to return to, though. In order to share what’s been happening with me, I wanted to talk about what’s been going on via my newsletter. Early Sunday night, I had a massive headache. To the point, I just couldn’t sleep. To the point, I was screaming in pain. As the headache progressed, the desire to want to vomit every hour came. I wanted to call 911.

I used to brag about how high my tolerance for pain was, but now I don’t wish to wear that tolerance with pride. I see the need to do so was out of a place to ensure I wasn’t a burden to other people. I’m not, though, so if I’m in pain and I need help, I should get help. I kept sifting in my head what warranted a call to 911. I just didn’t feel like myself. I called my Mom first, and I told her I was going to the emergency room. After I called 911, I was promptly picked up at my door by an ambulance. That morning felt like a blur, chopped moments of time diced to create sporadic pacing. Hours felt like minutes. Minutes felt like ages. I was literally screaming in pain to release physical discomfort vocally. Something I had never done; I had never been in so much pain to the point where I just wanted to project my voice loudly and in agony. I see how my high pain tolerance was for the satisfaction and comfort of others and not myself. Why do I need just to hide the physical pain I have felt for so long? Doctors were trying to figure out what was wrong. I hadn’t had a fall or anything.

Image description: My friend Chiomma, a Black non-binary person who visited me at the hospital. Chiomma has pink hair, they’re wearing glasses and a mask giving the camera a peace sign.

Brain surgery is strange, the aftermath, the memories that decide to ping out of nowhere. The things I forget temporarily. I was at the hospital for several days recovering and feeling restless. As often as I had been in hospitals as a child, it’s not a feeling I miss. I felt restrained and restricted. I felt no autonomy. There’s been some pain and intensity in my body. My friends visited me, called me, sent me things, and texted me regularly. I felt surrounded by community, and what a time, too, considering my recent discussions on what that means to me. I had lovely visits and meals sent to me by my friends Chris, Chiomma, Gabby, Adrianna, Kris, Sarah, Meredith, Stephanie, my partner Noah, and their family; my mom drove 10 hrs to see me and helped take care of me in the Hospital as well. If anything taught me the profound importance of reaching out to receive community, it was during the time my hearing aid broke! This very instance reiterated my need to reach out to my community. After the ER visit on Sunday, I stayed in the ICU for a couple of days and then had brain surgery Wednesday to remove a colloid cyst. Friends dropped off soup and flowers back at my apartment. I just felt an abundance of love. Love from friends who’ve been actively present and those who necessarily haven’t been. My partner would visit daily, bringing donuts, books, and other things to bring joy into the ICU for me.

Image Description: A photograph of my partner’s hands holding a colorful book of painted flowers. They are wearing a light green long sleeve shirt. My green hospital gown is being worn, along with me wearing bright blue socks. The book they are holding is called “The Snail with the Right Heart” by Maria Popova and illustrated by Ping Zhu

After the surgery on Wednesday, I was expected to go home to my apartment. The Doctors communicated, though, that if there were any issues, to please return to the ER. I took that advice in but didn’t feel that I would have to go back to the hospital. Sure enough, though, after returning home Wednesday, the next morning, I had issues with a leak in my head due to the procedure. It was pretty strange and frustrating. My head was just leaking a clear liquid constantly. I went back to the ER, though, and was seen immediately by the Neurology department. I was previously told that if the removal of the cyst didn’t go as planned, I would need to have a shunt put into my body to help me recover properly. I was hoping that wouldn’t be the case but was quickly told by doctors that I would need to get that procedure done. Needless to say, I was feeling really frustrated and burned out. I was exhausted from the doctor’s visits. I just wanted to be home, and I wanted my autonomy again.

Image Description: A photograph of a beige sweatshirt with “The Web of Community Makes Us Stronger” written on it, lying on my Hospital bed. The sweatshirt is from Meredith Anne White and was made by them. You can purchase her sweatshirt here.

After returning to the Hospital, I had officially finished a total of three procedures to try and take care of the cyst. I was running on little rest and some pain. I had one final surgery to put a shunt in my body, which just felt like a large straw running inside of me. I had to be on watch again to ensure everything went smoothly before I was finally released to return to my apartment. As I was on the last leg of this process, my friend Jack put together a meal train that allowed others in the community to make me meals as I recovered. I’m so thankful for their efforts in supporting me in that way. I try my best to accept help and care, but there is still some resistance. Each time I accept the care, though, I am met with such grace and love from my loved ones.

I am still in deep recovery. My body is moving so slowly. I’m trying to embrace it. I am sleeping a lot and not engaging too much with others. Writing this and making a drawing has been helping me get back into better-ish spirits and started getting me back into my own usual practice. I don’t want to glorify this slowness, especially due to how I got here. I am trying to figure out how to talk about these experiences in my Disabled body while not just having everything wrapped up in a nice bow with an easy resolution or things seeming like they are just okay because they aren’t. I return time and again to the reason I share these experiences, to make sure others know they aren’t alone in them. It can feel scary when our bodies are suddenly in an emergency. When we don’t know what’s happening to them. I see how and why I had avoided being present in my body for so long as a kid, especially during surgery.

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I am feeling deep gratitude for those who’ve shown up for me as I have recovered from surgeries, the nurses, the Hospital staff, my clients who have shown me so much patience, folks who are supporting my work by sharing it or purchasing things and I am thankful for you taking the time to read what’s been going on. The Instagram post above includes an image description.