I finally remember why I delayed going to the hospital when I was 11 or 12 when I broke my wrist.

I didn’t want to set foot in an ER. I was petrified of the very idea of being surrounded by people in pain who were scared and unpredictable. At the time, I was still scared of everything. I would hold onto my mom and close my eyes as we walked past Halloween decorations in the store because masks scared the shit out of me. I had nightmares for weeks after watching Ernest Scared Stupid in sixth grade. I was afraid of the shadows in my room because I slept on a bunk bed with a curtained-off nook under it. Every night, I would vividly imagine the troll from the movie grabbing at my leg as I went up the ladder. I don’t have such a vivid imagination anymore. I can’t hold an image in my mind’s eye like I used to (aphantasia due to one concussion too many).

I’d seen the television show ER by the time I broke my wrist. I didn’t want to be anywhere near that environment. I remember liking the show quite a bit but also it making me a bit wary of the very human mistakes made in real life as they’d been presented on television. Like that time Carol Hathaway accidentally gave a patient the wrong blood products and ended up killing them. She pretty much forces the hospital to suspend her during a crisis with the nurses and the next episode is the one where she goes above and beyond during a store robbery committed by none other than Ewan McGregor (side note—that reminds me of how I first saw Mark Ruffalo in an episode of Due South)—the thing is, the ER was teeming with people. I hated crowds.

I get so uncomfortable with being close to that many other human bodies that I do things like hyperextending my thumb and nearly dislocating it to distract my senses. I get very overwhelmed by scent and a hospital is full of a variety of odors that run the risk of making me vomit. I held off on seeking treatment for a broken wrist for two reasons:

One, I was apprehensive of going to the ER because I saw every week that it was a place that was full of people. And sometimes there could be a freak medical error that would make things worse. I did not want to risk seeing something. I was scared.

Two, I compromised and had my mom make me a doctor’s appointment for the following day so I could get out of school early. I wanted to appear tough to everyone around me. I knew it was pretty bad—I’d heard my bone crack because of how quiet the snow made everything surrounding me when it happened. I was sick of being scared of everything. I didn’t want to be perceived as someone who was frightened by so much.

When the doctor saw my x-rays (the positions you have to hold your broken limb in hurt like fire to do) he said I’d broken my growth plate. I had a vision of being an adult with one child-sized wrist after he said that. I was worried it meant my wrist wouldn’t grow any bigger because I’d specifically broken the growth plate. I got put in this thing called a Sam splint until the folks who put fiberglass casts on could see me. It was basically a sheet of malleable metal covered in foam that they formed to my wrist. The fiberglass application was worrying because it gets pretty hot even with the cotton wrappings protecting my skin. (Side note—when they removed the cast weeks later they told me to tell them when the cast got too hot again and then they ignored me when I asked them to stop for a second to let it cool off. Why ignore me when I’m specifically mentioning what you warned me about?)

The doctor who saw me that day was the same one who said that the skin of my thumb becoming dry enough to crack and peel away was because I secretly sucked my thumb. He never believed me when I denied being a thumb sucker. He scoffed and rolled his eyes. He’s the one who cut my ear canal with a scope one time because he just jammed it into my tiny ear.

I don’t have a good track record with medical professionals. They always seem to think I’m a liar. I went to an urgent care for a UTI I’d developed from taking bubble baths every day for a very long time and I was on my period when I gave my urine sample so the nurse was alarmed by the blood. Then she didn’t believe me when I told her I wasn’t sexually active. She asked the same question about three different ways like she was trying to get me to change my answers or something. Every time I read or hear someone else’s ordeal with getting medical professionals to believe them when they say they aren’t sexually active I see some comment defending the idea that patients always lie. I’m not a liar and I resent being treated like one.

Like, I understand the need to do a pregnancy test before a medical procedure like an endoscopy but when the patient hasn’t had any fluids due to the procedure they’re about to go under for it’s really stupid to ask for a urine sample when a blood test is offered. I had dust in my bladder and they made me try anyway. I sat on the toilet with a cup between my legs for twenty minutes, told them exactly why I couldn’t urinate when I came back to the room with the empty sample cup, and then they did the blood test like I’d asked them to before they told me to go pee. And no one would take my word for not even remotely having the chance of being pregnant. I remember on House one of the things he always said was that patients lie. “Everybody lies” was on merch for House M.D. But that’s not true. You can’t just call a patient a liar and expect them to want to listen to your advice. If the doctor doesn’t believe you then what is the point? They aren’t going to care for you properly if they think you’re just a liar.

That attitude has kept me from seeking medical care. I don’t particularly feel like subjecting myself to that kind of pathological disbelief on a regular basis. Besides—all the specialists I saw for post-concussion syndrome ran out of ideas on how to help me. The neurologist referred me elsewhere when Botox made my pain worse. The migraine clinic said we’d hit a wall with treatment options. The Headache Institute kicked me over to pain management. Pain management refused to prescribe me things that worked like Vicodin and Tylenol 3 and instead put me on an NSAID that burned a hole through half my stomach and nearly killed me. Texas has banned delta-8 products so I’m about to run out of my migraine prevention since possessing a mere gram of it could get me jail time. I don’t want to go back to the doctor for it. I hated the medications I tried. I was having migraines almost every day before I started with delta-8.

I got a new insurance card in the mail because the previous doctor I’d been assigned left or something. I don’t know who this new doctor is other than the fact that it’s a man and I’d specifically looked for women doctors when I had to swap from the original Texas Medicaid program (STAR Plus) to United Healthcare (I still don’t know why I had to do this). I should make an appointment as a new patient but I can’t make myself do it. I gained twenty pounds on Celexa and I’m a bit angry about it. The SSRI didn’t even do anything to help with my depression and now I feel worse because my pants and shirts are tight. I don’t want to go to the doctor only to get told I need to lose weight.

I even have a tough time with the optometrist. I’m overdue a checkup by over a year but I can’t bring myself to make an appointment. Last time, it took me an entire day to recover from the prolonged interaction. Maybe it’s because I don’t talk to many people in general that makes my social battery so low. I don’t have the tolerance to withstand social interactions. Plus, having my eyes examined is incredibly uncomfortable—I not only have to respond to questions and make decisions in a split second but the lights are out and the doctor is shining a bright spotlight directly in my eye. I have refused to get my eyes dilated ever since they came up with the machine that can take a photo of your retina without the dilating drops. Purely because the step where the doctor shines a light in your eyes to see whatever it is that they need to see was a thousand times worse with eyes that have been dilated. I’m too photosensitive to withstand that.

My first memory is of being pinned to an exam table (the doctor was leaning all his body weight onto the hand pressed against my entire chest and it was hard to breathe) and having my ear infection drained—or something to do with digging in my ear. I was apparently so young at the time that my mom is really surprised that I remember it. I remember screaming because it hurt and I was scared because of how hard the doctor was pushing on me. I felt like he was crushing my chest.

So doctors have always made me wary. Yes, that pediatrician was helping me with my ear infection, but he didn’t have to nearly crush my chest. The pediatrician in Wyoming seemed to think I was a little liar and treated me like one even to the point of carelessly shoving a scope in my ear so hard that it cut me.

I’m good at masking my pain now. When I was about 13 I pulled a muscle in my back doing jumping jacks in Taekwondo. I had to run the mile the next day in P.E. and I was the last one that day because it hurt just walking. As my best friend walked with me back into the locker room we overheard our teacher complaining to another teacher that I’m always faking injuries. I have never faked an injury—I am exceptionally clumsy. But that was another instance of an adult thinking I’m a liar. From then on I tried to hide when I was in pain.

Now I’m constantly in pain and masking being second nature means people who don’t know me don’t realize I’m barely hanging on. I also know that going to see a new doctor about my constant headaches when it’s been so long since I’ve seen one about them carries the likelihood that this new doctor will think I’m lying. I hit my head so hard on the edge of a table that I got a concussion in 2014 and was quickly diagnosed with post-concussion syndrome after that first neurologist heard my history of concussions (plus the fact that I played a contact sport in high school) and I really don’t want to go over it all again with a new person. My imaging never showed anything wrong with my brain. Honestly, I don’t think anyone will have answers for why I still have a headache after over a decade until after my death when they study my brain (I’m donating it when I die).

That’s a sobering thought. I will never get to know exactly what my brain looks like after I die. I will never hear the pathologist or whoever ends up studying it describe what so many concussions at a relatively young age did to the structure of my brain. I follow Dr. Christopher Nowinski and the Concussion & CTE Foundation and understand how inevitable my post-concussion syndrome was after reading his research on the dangers of full contact sports at the youth level. There was recently a fifteen year old kid who died and was diagnosed with CTE. Dr. Nowinski has started a movement. “Stop hitting kids in the head.” He brings up the dangers of repeated head injuries in youth sports and having been in youth sports I feel very strongly about seeing things like peewee football where there is tackling involved. Concussions aren’t something to brush off.

I got a concussion during lacrosse practice when a teammate tripped me up and I slammed into the ground. I’ve written about it here before—I blacked out, had double vision when I came to, couldn’t stay awake on the way to the ER and in the hospital I was in and out of consciousness. I was out completely when they took my CT. They kept needing to wake me up. I’d hit my head during my very first time at lacrosse practice in my freshman year (didn’t even get an ice pack—all our main coach had to offer me was a slightly cold bottle of water) and got body checked a few times during games. Back then we weren’t required to wear protective gear beyond a mouth guard.

Now, I did wear a helmet once I was a goalie, so I was less worried about further head injuries when I was standing in the crease. Instead, I got pelted with the ball in my extremities (once I got hit directly in my bicep and my hand went limp for a while during practice) or on one memorable occasion during a miserably rainy game when I stepped in front of a shot that was meant to go between my legs but because I’m short it ended up hitting me full speed in the crotch and yes that hurts (especially when the cup in the padded shorts I wore hit me just as hard as the ball did in exactly the worst spot). My point is, as soon as I was playing a position that required a helmet I wasn’t afraid of getting another concussion.

I’m so curious what a cross-section of my brain will look like. Will there be evidence of it all? Worst of all, I’m worried my brain will just look average. I’ve seen my MRIs and I can’t really read medical imaging (though I do know what a brain bleed looks like on an MRI because I looked that up) but I do have a slightly abnormal brain shape. It’s subtle. If my brain looks average after my death, everyone will think I made up having a 24/7 headache.

So, I will never get an answer as to why no over the counter pain medicine will touch my headaches. I tried pain management but they weren’t comfortable prescribing me the meds that actually worked on the headache and thought Indomethacin was a good idea to prescribe “as needed” to someone who has expressed repeatedly to every doctor the clinic assigned me that my pain is constant and NSAIDs do nothing.

That’s another thing that’s keeping me from going back to the doctor. At the pain management clinic I lost count of how many different doctors I saw. It was a new person every single appointment and I had to rehash my entire history each time. I didn’t receive adequate care. In fact, after the Indomethacin-induced ulcer that nearly killed me, I don’t trust pain management to manage my pain at all. I had a medication that worked for me but no. They weren’t “comfortable” prescribing it to me.

I’m the one who is in constant discomfort. I spent so long during the process of applying for SSI proving my condition and trying to find treatment without success because every doctor I saw was stumped on how to treat me. And now it’s been so long since I’ve seen a doctor besides my psychiatrist that I have no desire to try again to find relief through the medical system because I’ve read too many accounts of doctors and nurses being heinous on top of my own experiences with doctors either harming me, downplaying my pain, or telling me I’m lying.

I will live in pain. I may have to spend all my time lying down in the dark to avoid increasing my pain, but I’ve gotten used to coping this way. My life is very limited. I haven’t driven a car in a decade because of how I will have moments where a road I’ve been on countless times no longer registers as familiar and the movement of other cars around me is overwhelming to my senses. It’s not safe for me to drive anymore.

When I was a kid I never considered what my life would be like at forty. I honestly wasn’t sure I’d make it this far. I tend to live one day at a time. I don’t like making plans because I never know how I’ll be doing any given day. I do go to therapy every Tuesday, but I often have to end sessions early because the pain is so bad that I’m having trouble speaking or I run out of spoons mid-session.

I think back on that kid who desperately wanted to be seen as tough—someone who was sick of being called a crybaby—to the point where she went to school with a broken wrist to get called out of class early for a doctor’s appointment to get a cast rather than going to the ER immediately when it happened and showing up to school the next morning with a cast already in place. If I hadn’t been afraid of everything in general I would have just gone to the ER in the first place. Having an appointment gave me time to work up the nerve to actually get myself looked at.

In Mandalorian culture, individuals who had suffered debilitating brain trauma could mark their armor with a unique sigil that would indicate their condition to any who saw it. The sigil was comprised of the Mandalorian runes for M and S, and short for the word mir’shupur-“brain injury,” when translated from Mando’a to Basic. It served to notify others of the wearer’s disability, while at the same time acting as a badge of honor recognizing the wounded individual’s prior service. Mandalorians who saw the mir’shupur sigil on another’s armor knew to treat the wearer gently, and to offer ready aid should they appear to be in need of it. [Wookieepedia]

✨

I’ve been a Star Wars fan since I was six or seven. My sixth grade language arts teacher held me after class one time to ask me to please write about anything other than Star Wars.

Before the prequels were made, I disliked Boba Fett so much that I had a headcanon where he stole the Mandalorian armor he was wearing. I don’t know why I thought that.

(Hey, special shout out to Temuera Morrison and Robert Rodriguez for making me like Boba Fett now.)

So, as a massive Star Wars fan with a traumatic brain injury, the idea of the mir’shupur sigil existing in Mandalorian culture is incredibly comforting.

I got it tattooed on my neck.

My traumatic brain injury means that my behavior may be “off” at times and finding out that Mandalorians had a sigil to identify someone with an invisible disability who may need a closer eye at times was kinda sorta extremely emotional for me.

I got the mudhorn tattoo because I have had so many hits that resulted in concussions over the years that my brain broke, but I’m still standing. I got smacked around by a proverbial mudhorn, but I survived. I suppose it’s a symbol of my metaphorical armor.

In Mandalorian culture, they follow the Resol’nare—the Six Actions.

The Resol’nare goes like this:

Education and armor, self-defense, our
tribe, our language and our leader—all
help us survive.

To me, the most important thing is education. The more knowledge we have of all aspects of the universe and our own existence, the more empathy and understanding we have for the life within it. It’s why I wrote this book.

My armor may not be physical besides the design I drew from Loki’s pauldron I’ve had on my left arm for years and the mudhorn on my hand, but it is a metaphorical armor. Armor in my own skin. I have the mir’shupur sigil on my neck because I don’t have a helmet.

Self-defense is something I’ve been focused on my whole life. I’ve done martial arts classes for Taekwondo and Muay Thai, I took up archery when I was ten, I can predict outcomes of physical actions (and potential reactions) so I have fantastic aim and have fired several guns. But I respect the power of weapons and the capabilities of the human body. I don’t seek to use my skills to hurt people. I seek the knowledge of my own capabilities.

My tribe is humanity.

Language is the second most important thing to me. I may have taken classes in Greek, Spanish, and American Sign Language, but I’ve taught myself so many more. Latin, for example, has made it much easier to work out how to read other European languages. If you know the root word for something, you can understand what’s being said or written with context clues.

I don’t have an specific leader whose cause I would rally to…but I think I do have a responsibility to support those who need help, ergo—

My leader is Humanity.

I wrote this because I think this way of sharing my own knowledge and experiences could be supportive. I may be disabled by a traumatic brain injury and not capable of doing the things that other people can, but I am capable of sharing my own knowledge and thoughts. I’m not arrogant enough to think it will change anything that has consequences, but I do think that someone out there may benefit from what I have shared.

Be it a new idea that sparks ideas of your own, a laugh when you don’t think you need one, or just something to pass the time, I hope this book about my experiences has given you something to think about. Maybe I put another wrinkle in your brain.

Knowledge is power. After all, that’s why it’s so often suppressed by those who are selfish enough to think that other people are less important them.

You, dear reader, are important to me.

Don’t forget to hydrate.

The edge of that table straight up knocked the self-deprecation regarding my appearance—not thinking I was pretty enough

That’s gone.

I am pretty.

I genuinely don’t care what other people think anymore. I used to constantly worry about not being “enough” for everyone else. Or “too much”.

It’s astoundingly freeing—not caring what anyone else thinks.

When I was trying to get a job during the recession, I went on countless interviews after which I never received further contact from my interviewers, and I was frustrated. After one job interview where I was rejected, I was told to come back tomorrow for tips on interviews and more information on a job opening in ALEC for a graphic artist, and he wanted me to look over who they were and what they stood for.

ALEC is the American Legislative Exchange Council, and their main agenda is rewriting state laws regarding our rights so the legal language loopholes make it easy to sneak in things that the right wing can’t obtain by being forthright. They’re also corporate funded. Their beliefs are the antithesis of my own.

The next day, I told the guy I didn’t want to work for someone whose political stance was entirely opposed to my own. He said: “if you want a job, you should leave your own feelings at home. Work is work.”

I reiterated that I couldn’t do that, and he moved on to the tips he had.

“You should smile more—you don’t look like a fun person to be around.”

I started crying. I don’t remember anything else he said because he didn’t stop talking while I cried across the table, but I dissociated until he stopped talking.

In contrast, after I got back from medical leave from my last job, I was still having lots of trouble (proud to say I solved the whole “what’s due when” disorganization by getting everyone huge yearly planners because post-it notes are pointless if you don’t organize your timeline for your projects) with needing to leave work early or lie down for a bit and generally having seriously stressful symptoms, and I was already stressed because I was moving to Texas. While we were going through my schedule so I could pass on my current projects to the new employee, my boss told me that it was good that I was moving, because he might have fired me otherwise.

The last time some job interviewer looked me in the eye and said shit like that to me, I fucking cried in front of them and sat there while they talked at me.

TBI Jenn?

I looked my boss dead in the eye and just raised my eyebrow and left to make coffee. It’s strange having a positive change to my personality. It feels like cheating. No more body dysmorphia. No more shame. I will not take bullshit anymore.

I suppose it’s a trade off for the constant pain. “Sorry I’m making you hurt all the time, here: I fixed your ego.”

I’m a lot more blunt than I used to be.

It’s taken a long time for me to get here. Recognizing my limits and not pushing past them was a slow process.

I’ve come to realize three things:

1. 1. The next concussion will either disable me further or straight up kill me.
2. 2. I find option one a horrifying nightmare existence since life is hard enough already.
3. 3. I can’t change which one happens.

And there is a “next” concussion. I’m not lucky enough to avoid whacking my head hard enough to rattle my brain around for a ninth time.

I’m a pragmatist—not an optimist.

The realistic outcome of another head injury in my case is, simply put, bad all around.

Jokes about helmets and bubble wrap are all well and good the eight hundredth time around, but I need people to understand a hard truth about head trauma:

It doesn’t get better for some people.

It gets less frightening as you get used to your new normal, but that is exactly what it is. The new normal.

And it’s okay that it sucks. It’s okay that I have good days that sometimes trigger imposter syndrome, or bad days when I can’t sit up without more pain, but I can’t stop coming up with things to write.

It is okay that I need to lie down in the dark so I don’t hurt as much.

I did all the fulfilling things in life when I was a child and I lived in so many different places and saw so many different things that most kids don’t get to experience. And as soon as I got to the age where I was finally getting to “adult” and had job security, I got a TBI at work and now I’m restricted to laying in the dark in order to avoid constant cluster headaches.

While I’m angry that all of that school and stress that I went through (all that wasted and expensive effort) still happened, I’m also relieved. I know my limits now and I’ve found contentment with them. I can rest after so many years of stress built up over and over and over.

So, I think being constantly stressed and on the point of suicidal ideation every few years makes this traumatic brain injury feel like something that has upsides to. I may hurt all the time, but I feel a lot less unsure about who I am since the concussion happened.

I think we as a society are becoming more and more aware of trauma and its potential consequences by being more open to the idea that sharing it with others, and it is a good way to cope with it all. I think social media and forums like Reddit are helpful in informing people who need questions answered.

Answered questions make the present feel less frightening, because the more you know, the better prepared you are.

Because my brain has always catalogued quotes—I have a lot memorized and there are two quotes I think about a lot when I remind myself to be patient.

“Proper preparation prevents poor performance,” from Constable Benton Fraser (“Royal Canadian Mounted Police. I first came to Chicago on the trail of the killers of my father and, for reasons that don’t need exploring at this juncture, have remained attached as liaison for the Canadian consulate.”) in the 90s TV show Due South regarding knife throwing, and “what one man can do, another can do,” from Anthony Hopkins’s character in The Edge (regarding killing a Kodiak bear that’s hunting him and Alec Baldwin’s character).

After nearly a decade and hindsight regarding my symptoms, I can tell that I’m declining. I used to be able to drive and go see a movie. My short term memory was bad, but now I’m forgetting things mid-thought more and more frequently.

Realizing that my lifespan is much shorter because of repeated trauma to my brain isn’t as frightening a prospect as I once thought.

I’ve come to terms with it. Mostly because I’m tired.

It is exhausting to be in constant pain.

I don’t really miss the person I used to be. But it has taken me years to be comfortable with my new personality. It’s the little things that get to me from time to time.

I do miss coffee. I used to love the smell of coffee—now it makes me gag. Coffee smells like old socks to me now. It tastes about the same.

I miss my eidetic memory. I had to draw and label all of the rivers in Europe for a Geography test, and that was the easiest test I’d ever taken. I just stared at the map for five minutes before I was handed the test, drew and labeled the rivers, and handed it in. I miss having that kind of recall.

I miss playing video games. I get really flooded from the test of hand/eye coordination and have to recover from overstimulation if I do play a video game.

I miss going to theme parks and riding roller coasters. I finally moved somewhere where there’s one close enough that it’s not half a day’s drive away, and I can’t ride any of the rollercoasters. I loved the feeling I’d get late at night after a day going on rides—how my body would still swoop every so often as it remembered the sensations of the day. I will never experience that again.

I miss going to the movies all the time. The last movie I was able to watch in theaters was Thor: Ragnarok. The day after I went to the movie, I was still recovering from the experience of light and sound and laughing too hard. I couldn’t put myself through that again, so I haven’t been to the movies since 2017.

That’s a huge deal for me. I used to go practically every Wednesday morning. I’d have entire theaters to myself.

I haven’t been able to withstand watching a movie in one sitting since I watched The Unbearable Weight of Massive Talent in February of 2023.

As of writing this, it’s November. I haven’t been able to finish a movie in one sitting for most of the year.

And I hate that. I can feel my interests waning and it disturbs me with how blank I feel because of it.

I don’t miss interacting with people. People exhaust me and I’ve always preferred to be alone. I don’t have local friends and the fact that I kind of prefer it that way is a comforting thing to me. I’m not worrying about how someone else perceives me. I don’t have to force myself to socialize. I don’t remember how I used to feel about social interaction, but I can’t stand it anymore.

I’m a hermit, but I’m okay with it. I like my alone time and my quiet. It’s way less stressful. It hurts a lot less when I’m alone.

I’ve reached the stage of acceptance in grief. I accept that this is my normal now. I accept that nothing will change that. I accept that I can’t do all the things I used to be able to do.

It sucks, but it is what it is.

I’m way too blasé about almost bleeding to death.

I’ve gotten to the point where I think knowing how it feels to almost die means I know what it feels like. You get heavy and cold as your heart slows. Your limbs slowly start to feel heavier and heavier. There’s a static haze over everything and a numbness—a numb that reminds me of waking up in the middle of the night with a dead arm. You do feel and hear your heartbeat loud (Mom said she could see my heartbeat in my ears), and it’s alarmingly peaceful and I don’t like that I know that.

Because. Y’know. History of suicidal ideation.

But what’s good is now that I know it’s peaceful, I’m not afraid to die.

So. I’m your huckleberry.

I needed three bags of blood.

Let me back up a bit.

One of the last things my pain management doctor prescribed me was indomethacin—to be taken “as needed”.

Which was way too often. Indomethacin is a very very powerful NSAID, and since I’m always in pain, that meant I took it more often. Which can cause ulcers.

Except indomethacin is vicious, so it couldn’t just be a normal-sized (whatever that means) ulcer. It had to be literally half the size of my stomach. And bleeding.

Indomethacin, I later learned from my primary care doctor, is notorious for causing bleeding ulcers. My doctor was actually a bit angry that my pain management physician prescribed it to me because he considered it too dangerous in my case. According to drugs.com, “Indomethacin may also cause stomach or intestinal bleeding, which can be fatal. These conditions can occur without warning while you are using indomethacin, especially in older adults.”

And, in my case, it did cause a bleeding ulcer. One I did not even realize the symptoms of until it was almost too late.

I have a terrible problem with downplaying my own pain. I think “well, it could be worse” or “I’ve felt much worse than this before” and tell myself to push through it. It’s such a bad habit that it almost cost me. It wasn’t until I vomited enough blood to fill the toilet that I knew things were very, very serious.

I remember taking a photo of the toilet bowl and texting it to my mom saying “I need to go to the ER” and staggering to my closet to get dressed. I nearly passed out while putting on clothes and, once I was at the top of the stairs, I realized I would not be able to get down them without falling and probably breaking my neck. I had a panic attack. My dad sat with me, helped my lie down on the floor, and we waited for the ambulance. My mom later told my that my lips were completely white at the time.

I remember finally getting my breathing under control. I remember feeling heavy—my legs relaxed and my arms felt like comfortable weights against my stomach. I remember slowly calming and thinking that it was all okay. Help was on its way. I remember the world getting quieter and things getting a bit darker around the edges of my vision and closing my eyes because I felt tired and everything seemed far away. I remember the paramedics asking me questions and answering them calmly—of feeling slow as they loaded me onto the gurney and carried me downstairs.

I remember being so calm.

I was even calm when the paramedic had a lot of difficulty giving me an IV while we hit potholes on the road. I told him “it’s always hard to find a vein on me—it’s okay.” When someone nearly rear-ended us on the highway, I was more annoyed that someone would follow an ambulance that closely than anything else. When the ambulance grazed a car on the way through the parking lot near the ER, I snickered.

I needed a transfusion of three bags of blood.

I tend to deal with difficult medical situations with humor, so I joked around with my nurse in ICU. We talked about horror movies (Hell, I even recommended that he get a subscription to Shudder—it seems like I will promote them at every possible chance I can) and he apparently decided to follow my lead and be a goofy “fun” guy.

He was terrible. I was out of it with blood loss, and on the last transfusion bag, he fucked up attaching the IV—leaving it open when he went to connect the blood to my IV access port and spilling donated blood all over me. He did not get a new bag of blood. He took his gloves off and got a towel, dropped that on the floor and used his feet to kind of clean it up. Without re-gloving, he went ahead to try and flush my IV. I made a joke that now he looked like Michael Meyers because he had blood all over his blue scrubs. When he went to clean my arm and flush my IV, he did not have any gloves on. My IV had clotted and he couldn’t flush the line. Mom noticed his knuckles were white and his hands were shaking when he was pushing the plunger. To clear the clot, he went and got a huge needle and stuck it through my IV to try and break up the clot. Mom asked him if he was going to end up pushing the clot into my body, but he ignored her and ended up pulling bits of clotted blood out.

I’m fuzzy on some of this. I remember that he used my IV line and the syringes meant to flush my IV (emptying them just a little but leaving a lot of saline solution) instead of a vein for cultures. I remember thinking how it was like he was making cocktails while he was doing the thing with the wine-bottle-looking vials (he even popped the lids off them like he was bartending). Then I remembered that I took photos because I was bored as hell.

He left behind an entire tray full of trash and smears of blood on the mobile computer stand.

After that, I was given a private room and prepped for a colonoscopy and an endoscopy because the doctors were worried about internal bleeding. When I got back from both procedures, the doctors were worried about two things.

One was a bacterial infection. I was put in quarantine. After a discussion with the infectious diseases doctors where my mom and I told them about the nurse and how he spilled blood on me and didn’t put on new gloves and screwed around mixing different samples to get enough blood to use in each culture, I only remained on antibiotics as a caution since I wasn’t showing symptoms of an infection (I later realized I had his photo on my phone and that his name was visible in one of them, so I texted them to my nurse so she could inform the proper people to deal with the ICU nurse—I don’t know what happened to that dude, but my nurse was livid and promised the hospital would handle him).

The second worry was that I had an ulcer that was the size of half of my stomach and they were worried that it was cancerous. Thankfully, it wasn’t, but I did spend nearly four days worried that I had stomach cancer. I was placed on acid blockers and iron pills. All told, I spent a week in the hospital and needed eight different IVs inserted during my stay.

I’m better now. No more ulcer and I’ve lost all the weight I gained since the “find a way to manage your pain” game started.

As I said, it wasn’t until recently that I realized how close I came to dying. I nearly died of internal bleeding.

The strangest thing is how I also realized that I’d been entirely calm once I came out of my panic attack. I’d still been breathing fast, but only by reflex. I felt heavy, but not scared.

I was just tired.

I use tattoos as pain management. While I’m being tattooed, as I mentioned, I’ve often nearly fallen asleep as the scratching becomes more noticeable than my headache. And during the weeks after as I’m healing, I have something else to focus on for once.

1. Don’t scratch your new tattoos.
2. Moisturize.
3. Don’t. Pick at it. Spray it with Bactine if it itches so much.

It’s easier to focus on that than how my head feels.

I have a bad habit of comparing my pain to a hypothetical injury that an entirely different person would be afflicted by. Brian Regan did a bit in his standup about this kind of thing. It involved him comparing his pain levels against first childbirth, then having your femur get cracked in half, then childbirth with a broken femur, and eventually saying “eight” on the pain scale because that one feels “safe”.

It’s a hard kind of mindset to overcome. Especially since I have such a high pain tolerance.

I don’t know if I’ve ever been pain free.

Headaches, tinnitus, knee pain (thanks to platelet-rich plasma therapy, that’s gone), back pain…

I don’t remember what it feels like to not have a headache. Which is annoying, because I don’t recognize what it feels like to feel better.

I do well from five in the morning to about ten, but the pain starts to distract me after that.

The worst pain comes from the cluster headaches. They’re triggered by light and can often knock me off balance if I’m upright when they happen. It’s a sharp, stinging pain that comes on suddenly—like an ice pick to the temple. I’ve been told that I look like I’m being punched by a ghost when I get a cluster headache. They’re why I spend most of my time in the dark. I don’t get them when I’m in my room with all the lights out.

I’ve gone through so many different pain medications. Vicodin helped. Vicodin was also the pain reliever my neurologist wasn’t “comfortable” prescribing me, so I’ve never been able to take it again.

I’m currently vaping delta-8 for pain relief and the fact that it gives me the munchies. I have no appetite, but cannabis makes me have cravings, so I’m eating more or less normally. I’ve lost a lot of weight and I’m pretty sure the only reason I haven’t lost more is because of the munchies.

My most irrational fear is that I’ll lose this financial aid because of how I don’t have a general practitioner doctor and that that might seem, to the government, like I’m not “suffering” from a disability. It doesn’t help that it’s an invisible disability.

(I blame the people who take it upon themselves to police handicapped parking spaces because they see someone can still walk to their vehicle without assistance for some of that.)

I am almost constantly worried about not being disabled enough to continue to have access to government aid. I have this fear of having that support yanked away from me because I’ve always heard of frequent medical checks on people who are on Disability and because of the nature of my disability being a traumatic brain injury, I often forget something important about TBIs that my medical records will definitely show.

It’s permanent. Brain damage is permanent. There is no way Social Security would deny me assistance. Not after what experts explained during my second court hearing.

An employment specialist said, under oath, that I would never be able to maintain a full time job. I think I remember him saying I wouldn’t even be able to keep a job sweeping floors.

It’s too easy for me to fixate on being disabled “enough” from a day to day basis because of how random my symptoms are. Some days I’ll feel fine. On days like those, that imposter syndrome kicks in real hard.

The thing is, filing for Disability was extremely dehumanizing.

I suppose I’ve been conditioned by capitalism because I had the mindset that, if I can contribute, I don’t deserve federal assistance because I’m not as impaired as others seeking Disability.

I had to prove to the government in court that, yes, I am impaired enough that I can’t feasibly work or even live on my own. It was invasive, dehumanizing, emotionally taxing, and overall the most stressful thing I have ever done, and that’s coming from someone who went to college twice. While commuting twenty five miles each time I had class.

(No, I didn’t complete my forensic psychology master’s degree. I dropped out. But that’s another story.)

I had two hearings because the judge wanted me to take a cognitive test after the first hearing. No one told me that it took four hours to complete. Or that when I was done with the test, I then had to pour my heart out to a complete stranger and tell them what felt like my life story.

During the second hearing, there was a psychiatrist whom I’d never met who referred to me by the wrong name and claimed I had a bad relationship with my parents. I don’t know where she got that from my assessment—my parents have been nothing but supportive during all of this.

Trying to apply for Disability includes so many hoops you have to jump through—I was told I had to go to my local Social Security office to file paperwork instead of being able to file it online. I had to hire a lawyer to help me because legal language has nuance that I’m incapable of comprehending anymore.

Even that came with its own stress—finding the right lawyer reminded me of going on endless job interviews during the recession.

I can recall one lawyer barely looked at me while I was talking to him. He was focused on the papers on his desk and told me something that I don’t recall but it made me start to cry. I remember feeling hopeless about it all. I remember just wanting to quit.

The Packard Law Firm specializes in Disability cases. My lawyer was amazing even in that first meeting. It was the first time I felt like a person when talking about my disability with someone who had the potential to help me. My lawyer argued my case well and I qualified for Disability.

Just because I qualified doesn’t mean that the stress of it goes away.

Because no matter how many times I tell myself otherwise, I’m terrified that I will be cut off and left to fend for myself. I don’t know how to get over thinking like that.

I’ve had a doctor say “I’m sorry, but we’ve hit a wall” to me, smile, and then drop me as a patient.

I don’t blame him.

My last pain management doctor commiserated with me that the only possible pain management that may work for me at the time was still not legal in Texas.

(Weed. It was weed, and Delta-8 CBD was not a thing yet.)

So, I’m thoroughly exhausted about seeing doctors. All of these brain doctors trying prescriptions and injections to the point where the first general practitioner doctor I saw suggested that I go on oxygen for ten minutes for “farts and giggles” because it wouldn’t hurt to try (it did help a little).

She actually said “farts and giggles” to me.

Gosh I’m tired remembering all of them. I think I’ve seen about ten doctors. Five of those were different pain management doctors I had to see at one clinic. I had to repeat the story of my concussion five separate times in one clinic because they were super shitty at scheduling who was on staff at any given day.

Three of them refused to prescribe me any opioids because they, personally, weren’t comfortable with it.

(I was a bit more uncomfortable than them since that was the only thing that alleviated my pain.)

Of the other two, one tried a sphenopalatine ganglion block—which involved shoving two extra long cotton swabs all the way up both nostrils (think COVID test but deeper) while the doctor dripped lidocaine down the sticks and I laid on my back for forty-five minutes so the local anesthetic could trickle down into my sinuses. All that did was make me taste lidocaine for the rest of the day.

The last pain management doctor prescribed me indomethacin to take “as needed”. This instruction was later deemed dangerous by my primary care physician and I have more on that later.

My latest primary care physician moved. I can’t do it again. I can’t make myself find a new doctor. I can’t verbally repeat everything to another doctor when I’ve exhausted all medical means of pain management. I think I’d scream if I had to go to a new doctor.

Like—a frustration scream. The kind of scream that I do when I wake myself up from a nightmare where I have really bad aphasia. I scream in the dream for so long that I do it out loud and wake myself up. I sound like Laura Palmer from Twin Peaks.

My first memory is of being held down by a doctor as he cleaned out my ear infection. I remember screaming because he was pushing down on me so hard that it was difficult to breathe and it hurt more than my ear infection—it felt like he was pressing down with all of his weight on me with one hand. I was barely three years old when this happened. I’ve done all I can to avoid going to the hospital since then.

I have always associated the doctor with experiencing more pain. And I do—the stress of seeing any doctor makes me run out of energy faster than usual and it makes my headache worse.

Even seeing the optometrist is draining for me. I never expected to be overwhelmed by answering the eye doctor’s questions, but this last appointment had me on the verge of a panic attack the entire time. Even reciting the letters in the eye test felt confusing—like it was too much for me to focus on. It didn’t help that I was still having trouble sleeping when I had that appointment. I think I’d been awake for thirty-six hours at the time.

Compounding factors made the trip to the optometrist extra stressful for me. Beyond the usual stress of seeing a doctor.

I don’t know how to get over this anxiety. So I avoid it as much as possible.

I was diagnosed with post-concussion syndrome and chronic migraine by the neurologist who did my Botox treatment.

At the time, I was glad there was a term for the unending concussion symptoms. I had a name for the thing that was wrong with me.

The Concussion Legacy Foundation explains post-concussion syndrome as “the persistence of concussion symptoms beyond the normal course of recovery. The majority of concussion symptoms will resolve within about two weeks. In cases where symptoms last longer than one or two months, doctors may diagnose Post-Concussion Syndrome. Patients with PCS can experience concussion-like symptoms at rest or in response to too much physical or cognitive activity, often forcing them to withdraw from their usual physical, professional, and social lives.”

(I’m donating my brain to the Concussion Legacy Foundation after I die—maybe something can be discovered about the progression of post-concussion syndrome from my brain that can help other people who suffer from it.)

Also according to CLF: “in high school athletes diagnosed with concussion, researchers have estimated approximately 10% will develop PCS”.

So it makes sense that I have it. I was a high school athlete (I still have my letter jacket).