I don't need to arrive at a lesson after every traumatic event.
i had three emergency brain surgeries, my store has returned and announcements for 2023
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TW: mentions of surgery, medical trauma, and bodily fluids
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.
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.
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.
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.
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.
Four Things For You!
Our LGBTQIA+ community is in mourning and needs deep support. Please consider donating to this gofundme for the Club Q Families and Survivors. Click here to donate.
I’ve been reading “Rest is Resistance: A Manifesto” by Tricia Hersey, and it’s been so lovely to read!
- A post shared by Nia Gibor| Chronic illness & Disability Writer (@the_chronic_notebook)
I really appreciated this thread by Nia. The Instagram post includes Image Descriptions in the captions.
I am always in awe by how much I still learn about my Deafness and find new ways to share my experience. This Instagram post is really resonant and includes Image Descriptions in the captions of the post.
I was asked to write a piece for Sarah Faith Gottesdiener’s Many Moons 2023 Lunar Planner, and I received some copies of this beautiful planner this past week during my recovery! It’s my first officially published piece of writing, and I am SO thankful to have played a small part in this planner with so many talented artists, practitioners, writers, readers etc. You can order yours today! The planners look amazing and are such a great tool to work with the astrology and moon phases of 2023! Sarah puts so much work and intention into these planners.
After a short break away from maintaining my online shop, I am back with a bit more of a subdued version of the shop! You can pick up a mug or some stickers at the shop and all items are on sale! I am almost done with adding new prints to the shop as well, including prints of some of the pieces I’ve had in this newsletter. Visit barryleeshop.com if you wish to do so.
As always, thank you so much for taking the time to read my newsletter, and I look forward to sharing things with you soon! Please feel free to comment on this post and share anything that connects with you, to a loved one, or on social media if you wish to do so. Please tag @barryleeart in your posts when sharing. I hope that you are staying safe and well. <3
So glad you are on the mend. After your partner posted the first time I was checking often for updates. Is it possible to pay for an entire year of the newsletter? I would prefer that.
so much love for you my friend.