How I'm living with a hole in my head: everything you wanted to know about it!
Hello, I'm Felix Warren and I live with a hole in my head. I also make my living from online tips, so here's a link to my tip jar. How am I doing both of those things? Read on and you will learn.
How do you have a hole in your head, Felix?
That's a great question. I have had a hole in my head since about the age of four. I was in a car accident in the early 80s, which due to laws and regulations at the time put me in the passenger seat of a pick-up truck during a head-on collision with another vehicle. My head hit the dash or the windshield or, you know, something up in the front of the truck. I don't really remember and no one's told me as many of the details as I would like to know, so, as anyone with a hole in their head would say, I'm somewhat of an unreliable narrator.
Anyway, after they took me to the hospital, they basically saw I had a large fracture in my skull, around where my hairline was, and they kinda... wedge the pieces back where they should be, sewed it all up, and called it good for the next... uh, forever. I had an MRI in 2022 for disability purposes which showed me my left forebrain has a two centimeter region in it that's just dead tissue and uh... whatever else. Like that's what's left in that area! Just a hole in my head!
Dude. Didn't someone check up on that sometime before like thirty years went by?
My mother brought me to a neurologist when I was about fourteen or fifteen and I was getting regular migraines, seeing tunnel vision and stars when standing up in P.E., and generally having Trouble With Life. The neurologist diagnosed me with migraines and prescribed me 600 milligram ibuprofen, and I got to sit out of P.E. and other physical activities when I had a headache. This did, essentially, nothing for my condition. I do recall having an MRI when this happened but I do not know the results.
Wait. I'm getting the idea that your parents were not very invested in your health and medical welfare.
Yeah my father is a deadbeat and my mother was the driver who head-oned into the other car, so neither have been very proactive in followups. My mother minimized the pain and still forced me to play soccer for the school team until I changed schools to a small school where they didn't have their own sports teams. Not because she was trying to get me out of sports, mind. She said I could play for a local school in town that I didn't even go to.
Is your mother like... homicidal?
Yeah. But anyway that's why I haven't had much help on this from the family side of things, and why I had to do the research on this into my adulthood starting a few years ago, because in 2020 my conditions got so bad I couldn't work a day job anymore. So yeah, you've gotten some explanations on how I got here but let me break down what it's like to LIVE with this head injury.
What's it like to live with that head injury?
There are two factors I deal with when it comes to the hole in my head. One is the occasional headaches which disrupt everything in my life because there's too much pain to function. They happen in response to incredible stress or to factors such as barometric pressure and U.V. light exposure. The second factor I deal with is permanently not having a piece of my left forebrain tissue. That means that at all times I face cognition challenges or cognition differences from other people. The left forebrain does logic stuff as well as language and communication skills, so, typing this is hard! But I like writing so I do it anyway.
I want to get into the headaches later, and talk more about the cognition stuff now. So, the cognition stuff.
Yeah, the cognition stuff. I basically just don't brain like other people do. It's honestly hard to figure out how other people brain because I've been doing the brain damage gig since I was 4 years old, and I don't remember anything before that, so this has sort of been MY normal all my life. And my normal all my life is that cognition is a moving bar. Sometimes I can tell you the isotopes of Uranium, Plutonium, Neptunium and etc in the decay chain that powers regular nuclear fission in nuclear power reactors, and sometimes I can't make lists in my head that are longer than 2 items. I don't get to pick when it's one or the other.
A lot of it depends on stamina and fatigue. If it's a day I haven't done a lot of cognition yet, I can definitely tell you the history of the cold war as it relates to the Kennedy, Johnson and Nixon presidencies. If I've been working super hard on cognition already then instead I'll have trouble telling which side of the street I should be catching the bus on. This has been really great at day jobs, because for a couple weeks I'd construct a new system for websites where the code checks out super clean and everything worky-worky, and then for three days I wouldn't be able to do anything besides search stackoverflow for code help, blink at the community's most commonly accepted answers, and then be completely unable to type any code. This was extremely difficult to explain to my supervisors, especially since explaining things is a skill that uses a lot of equipment located in the left forebrain.
I think the most difficult part is that since sometimes I am capable of really squeezing this melon of mine for info and ideas, I know I CAN do it, and I WANT to do it all the time! I do not want to do it only some of the time! When I can't do higher cognition stuff, I usually still WANT to, and I get very bored because I like it when brain go fast. I'll get a book and have to stop halfway in because my brain just stops being able to read it, and I'll want to know what's in the rest of the book, but I'll have to wait until my brain gets enough gas again because it slow slow bad brain no read no input words. I am a voracious reader but sometimes I just can't do it.
How do you get through the times when you can't think?
Ugggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggh. I try to take a nap. I watch other people play video games on youtube. I listen to music. Sometimes I do art and sometimes I don't even or can't even or won't even do art. Arrrrrrgh!!!!!
Anyway I guess we can talk about the pain now.
So what are those headaches like?
The scar where the fracture happens often hurts, and sometimes the hole in my head hurts. Like, I can feel where in my left forebrain the dead tissue is because that area... it just feels weirdly sore and tingly inside. Often the top of my head hurts, due to pressure or my scalp being tight. Bloodflow under my scalp is really... a situation. Let's call it a situation.
Besides pain in my head from the injury, I often get pain from U.V. light exposure. Fluorescent lights as well as sunlight do this. I wear U.V. blocking sunglasses to cope with this and otherwise try to avoid... well, light. This means I don't have a whole lot of activities I can do when this flares up for me. Sometimes I can listen to audiobooks or music. Honestly I prefer to stand in the shower with the lights off and let the sensations drown out the different types of pain I feel.
When I close my eyes I often see throbbing light shows where colors radiate and move, and sometimes I just watch those for awhile with my eyes shut. Sometimes I even try to draw them. Sometimes they make me feel nauseous and I try to focus on other things using meditation techniques. Sometimes I solve math problems in my head or, when my head can't do math because it's a bad brain day, I try to work out stuff for fiction stories I write, or just imagine what nuclear fission decay could be depicted as metaphorically in art. Sometimes I just pet my cat and can't think about anything besides focusing on that physical sensation.
Well, that's what it's like to live with a hole in my head. If you learned something, please consider tipping me. If you do, my life improves, which I enjoy. Also my cat would appreciate it. Thank you.