I don’t mind talking about it. It’s something that made me who I am.
When I was about 12, my health sort of started to eat itself. I suddenly had a ton of allergies, and there were days I couldn’t get out of bed. I got sick all the time. In freshman year of high school, I suddenly couldn’t see. For a long time a thing had been going on in my eyes, but I guess I didn’t think it was abnormal until it made it impossible for me to see. Basically this hole was kind of growing in my eyes, but it was more like a rainbow.
When I started having trouble with colors and detail vision, my mom freaked out a bit, because at the time, I was an award winning artist who had ideas of going to college for art. Then I started tripping over things, hitting my head, having trouble with depth perception. Then I got sick, and I mean sick.
I spent about 23 hours a day in bed. I had almost constant migraines. I had pain in my entire body. My skin turned yellow. I went to every kind of doctor you can think of and was tested for everything there is. One day, I had about 12 vials of blood drawn. No one knew what was wrong. The eyes weren’t that big a deal at first, because it seemed like I might have something really serious. The first couple of eye doctors I went to kind of looked at me and said “Oh it’s nothing big.” I actually had one guy tell me that my brain was just shutting off my eyes because I wasn’t using them properly. Yeah.
Then finally, my mom took me to a friend of our family who happened to be an eye surgeon. She did a free exam. I’ll never forget it because it was the first time anyone believed me. I’d been told by doctor after doctor that there was nothing wrong with me. I’d been referred to therapists, told I needed depression meds, told I was just going through a phase or needed attention. Then this doctor put on her head gear, looked into my eyes…took off the head gear…got new head gear…looked into my eyes…took off the headgear…got hand held tools…looked into my eyes…and then stared at me with her mouth hanging open.
“I can’t see the back of your eye,” she said. And suddenly the world simultaneously healed itself and flipped upside-fucking-down for me.
Then it was all about my eyes, the one symptom we could see happening. The one that was the most dangerous. But by then it was too late.
What happened is pretty simple: I apparently have some weird recessive DNA. It triggers certain bizarre immune issues at puberty. My immune system decided to attack my body. The eyes are a delicately balanced system. They show symptoms first. My immune system attacked them with a vengeance. They swelled up like balloons. Normal eye pressure is about 14-17. Mine was at a 22 at its best. It put a tremendous amount of pressure on my Retina, specifically my macula, cutting off blood flow like when you sit on your foot. You know those little shadowy things that float across your eyes? They’re called protein floaters. My eyes had produced so many of those that the doctor could not see through them. It was a fog.
They had to find a way to map my eye, to track the damage. Cue the eye exam from hell. I have always been, even before my autoimmune disorder, deathly allergic to melon. Any kind of melon. But now I was allergic to all sorts of shit, fruits vegetables, all kinds of crap. My dad is allergic to contrast dyes. So when the retinologist suggested this dye-based eye exam that is kind of like a CAT scan, my mom said “no”. See, they inject you with this dye and then they flash this weird light in your eyes. It causes the dye to glow, and then they can see the things through the fog. My mom told them I was too sensitive to stuff for that to be safe. The doc assured her they’d put a butterfly in my arm, meaning the vein would be kept open, and a syringe of benedryl was set on the counter. They’d never had anyone react, and they needed the pictures or there was nowhere to go from there.
So they put this dye into me, and it was like I’d been injected with fire, but there was no way around it, and to me, I knew they only had about 90 seconds to get the images they needed. So I sucked it up. finally the burning began to spread. Suddenly my back felt like I was being stabbed, and I suddenly couldn’t speak. I tapped my hands on my mom, then began sneezing spontaneously. My mom lifted my shirt, and I had quarter-sized hives. The nurse said “Stop sneezing on the camera”. Yeah.
My mom went ballistic. The doctor flew up the stairs and gave me the emergency meds. I slid into a dissociation state and nearly out of my chair. They had to prop me against the camera for the next couple minutes and reinject the dye. No other way, you see.
They did this test every few months for a few years.
But then there was treatment. Not much they could do, except try to get the swelling under control. Only way to do that was corticosteroid injections in the eye. Yup. A needle in the eye. No, they don’t knock you out. They numb the surface of the eye with the same numbing drops they give you for the exams and then they come at you with a needle, tell you to look down and to hold still. And you fucking do.
I was 15 when that started.
I went to experimental clinics, labs, and joined studies. I dropped out of those. Why? It’s pretty simple. The first day I came to the exams, I was kept waiting for over two hours. I was taken into a room. I was left there. No information, no talking. Suddenly a man came in followed by a group of people, all in lab coats. He started moving me around like I was a doll and talking like, “The patient presents with…the patient this, the patient that…”
I shoved him back and said, “The patient’s name is Kristina, and she is 16.”
He finished his exam, and when he left, after the students had gone, he took two Q-tips, dipped them in that pink shit your dentist uses to swab your gums before an injection, and SHOVED them under my eyelids with a cocky smirk.
The patient will never be an snotty little bitch again, I guess.
So yeah. Fuck those guys. They gave me two injections in one day, which no one had ever done before, because it was almost impossible to function with two pimple-like bubbles on your eyeballs.
Still my health was bad. Then all of a sudden, when my mom had given up, It just wasn’t anymore. Suddenly, I was fine, and all that was left were the eyes. I went back to school, except now I was blind.
In a few months, I’d lost about 80% of my perfect vision. I was photophobic. I got horrible and constant headaches. I walked with a cane. And not a single fucking teacher believed me, except my civics teacher, who had gone blind at a young age due to some other weird eye disorder, and my physics teacher who was deaf. I had teachers send me to the office for wearing my sunglasses (with a note on file). I had teachers get on my case about having an audio recorder and CD player for my books. I had teachers call me names, make fun of me, make me leave class to photocopy their notes larger, so that I missed the lecture the notes were on. I had teachers take my medications which had to be in my possession because of their time-sensitive nature and constant administration and hide them in their desks as punishment for asking questions or demanding help. I had classmates pick on me, but luckily, I was well-liked, and I was an officer in the ROTC. I even excelled there in spite of my vision, because my Captain believed in my leadership skills.
I always tell this story because I think it is funny. We had this special boot camp we got to go to if we were in the upper ranks of the ROTC. If you joined the military after high school (which I could never do) you got a higher paygrade for having gone through it. Almost like taking a couple JC classes in the military. It was grueling and all physical fitness, obstacle courses, PT, classes, guard duty…fucking blah. Our unit was allowed six participants. I sort of figured that it wasn’t really fair for me to go, even with my high rank (a company XO). To my complete fucking shock, my Captain recommended me to go, cutting out a classmate (and ex) of mine who was higher in rank. The boy went ape-shit. He went on and on about how unfair it was. He even went to the school board. My Captain made his reasons clear; he told them that the academy isn’t about military sponsorship. It’s about skills and quality. He didn’t care if I had a disability. In his eyes I had more innate ability than anyone there because I had worked so hard just to be where I was. The boy was angry. I told my Captain I appreciated the gesture, but honestly, we ought to make it fair. I told him that we should train to meet the PT standards, and that if this kid could make his, but i couldn’t make mine, he should go. I made mine. He didn’t. He complained about that too. At the last minute, we were told one extra person could come because another school had lost one. So he came anyway. The whole time he bitched about me being there. When I got there, the real military officers gave me shit like you wouldn’t believe, because they weren’t used to dealing with disabilities or recognizing that they can’t discriminate against high schoolers by law. The commander of the unit tried to dress me down in front of everybody for wearing sunglasses. I was pretty pleased with myself for telling him off but still sounding respectful. He kept saying “Take off my glasses”. I told him they weren’t his. They were mine, by law, and that if he had a problem with that, he could consult my attorney, the DOJ, and the doctor who prescribed them. He tried to fuck with me. I didn’t say anything except to ask him if he wanted me to have a migraine, because that’s what taking the glasses off means. He was so confused by me he walked away and called my Captain over. There were words. After that, he came up to me once or twice, almost like a test, to ask me if I needed him to slow down or if I was getting around alright. He wasn’t being nice. He was egging me in a condescending tone and with very bullying language. He’s a drill instructor, and you know what, that’s his job. I told him I was fine. But I made a decision: I wasn’t just going to make the female PT marks. I was going to test out of this fucking place at the male PT marks. And I fucking did. That boy…had an asthma attack on the track (I had asthma too, but I worked my ass off while he coasted on his “boyness”) and failed. At the certificate ceremony, the commander came up to me and said I had really impressed him, and that it was a shame I couldn’t enter the Navy. I thanked him, but what I wanted to say was, “Go fuck yourself and take the NAVY with you”. I ended up the Battalion XO Senior year. This would have given me a guaranteed spot in Westpoint if I could have taken it. My Captain cried when he told me he was sorry he had to give it to one of our Company XO’s. I told him that it was best for everyone, because I am not the type of person to enjoy taking orders. I had learned that about myself.
Around Junior year I got people to pay attention. My doctors got the DOJ and the Social Security people involved. A woman came to my school and enforced compliance in a tone of voice I’d never heard anyone but my mother use. She threatened to rain brimstone down on them if they didn’t give me what I needed, and things changed.
My parents wanted me to take a full scholarship to a local school, but I wanted to get away. So I did. I wanted to travel abroad, so i did. And when I was 19, they perfected one of the surgeries they had been working on the entire time I’d been struggling with this.
See, the injections had brought and kept the swelling down, but that meant that the fog was still there (since ocular fluid doesn’t replace), and the structures in the eye had been stretched all to shit, and were laying in my eye like melted plastic wrap. The old surgery was like a blind man hacking with a machete, but the new surgery used fluorescent dyes to track movement. Dyes that wouldn’t kill me. The old surgery had a 50-50 shot at complete loss of vision and made you lay on your face for three weeks. The new was fool proof and took 45 minutes. So, I got one eye done. They swapped out all the fluid and replaced it with saline. They peeled the distorted membrane off the macula. They stitched up my eyeball and gave me a sick metal eye patch. Looked like a fucking space pirate. It was rad.
But the blind spot is still there. The cataracts caused by the steroids are still there. The scars are there.
A few years later I had the other one done too.
My college was great. It took a lot of work getting all my reading done, about 500 pages minimum, per week, done via audio. I used to spend hours at the pool table in our residence hall, listening to my books and practicing. I got pret damn good too, at pool. It was difficult taking notes or working with a note taker. It was scary traveling by myself. It was hard to get people to understand there wasn’t anything WRONG with me. Just that my eyes don’t work even though it seems like I’m normal and fine, and like they should. People always think to be legally blind you have to be completely blind, and they think you’re not going to be able to defend yourself. I’ve been targeted by pickpockets. I’ve been followed by scary dudes. I’ve been treated like shit, laughed at, and accused by full grown adults of faking to get privileges, all because I can look at the place where their head should be and smile at the blank spot there. All because I can walk down a flight of stairs with a few neat tricks I know that have nothing to do with a cane.
But shit…you probably didn’t mean to ask for my life story. I’m going to get back to the point. My writing. What has it done for that? Like how can you be a writer if you can’t fucking see? Technology. It’s been amazing. I can use a computer same as anyone. The Kindle has been a fucking revolution for me because for the first time in a decade and a half I could read without pain and suffering. Just…all the things it does have made life so much easier than it used to be. It got me out of bad relationships with people who used my disability as a control. It gave me a little bit of confidence back. It helped me know I could handle myself.
And really, I think my vision loss had a lot to do with my writing. In some ways it gives me different perspective, sure, but it’s more than that. I was undeclared when I entered college. I didn’t know what I wanted to do. I thought about history or sociology. My mom had a degree in that and she was an English teacher. I wanted art history, but what the fuck was the point in that? Couldn’t see a damn thing. And then I had a class in poetry, and shit…That made sense. I’d always loved language and writing. Always been okay at it. Dorte stuff but never thought about doing it for a living. But then it was like yeah…yeah I’m gonna fucking do that. Just like when I decided to meet the male PT standards.
If it is in you. If you love it. If it defines you and possesses you, it does not matter how fucked up you are. You will find a way. You don’t have a choice. You are that thing. And you’ll adapt. You just have to let yourself. You have to keep pushing. You have to learn how to handle frustration. you have to train yourself into stamina. You just keep going. I’m nowhere near as successful as I want to be. I’m still going. I hope I get even better. I hope I can say things that make truth more obvious, or that help people put words to things they have always wanted to say.
I don’t need my eyes to be a fucking firestorm. That’s just me. Eyes don’t mean shit.
So keep going. Keep doing whatever you need to. Do it better and better. Bend yourself around it. People who see you struggle will think they’re lucky, but you and I know the truth: they’re not even close to the kind of strong you are. Not even a little bit.
Thanks for all the great messages guys. I hope that if you’re struggling with something like this, or a chronic illness, or someone you know is losing their vision and you want ideas of how to cope, I’m always open as a resource!