Coming To My Senses
People take a lot of things for granted. Namely, they take advantage of the things that help them get around every day. Fuck that. Cut that shit out right now. I absolutely despise the fact that people do this. Allow me to explain what’s lit this passionate fire under my ass. I suffered from a very rare disease. It’s estimated only 5% of people ever born have ever had it. I manage to beat those odds but none of the lottery tickets I’ve ever bought have ever turned to shit. Whatever, like I said, fuck that. My tale will begin exactly where it should, my 17th birthday.
October 1, 1997
We’re all cramped into my tiny little apartment in our Flatbush project building which isn’t usually my go-to good mood inspiration but as of 4 PM that fateful Saturday evening I was one of the happiest people in history. It was my 17th birthday party and I was having the first birthday party I ever had. My dad was never really into birthday parties, he never had any growing up. My mom was always so disappointed when she couldn’t throw me one because we didn’t have the money. In elementary school the kids in my class that had enough money through birthday parties and usually the whole class was invited. So I’d been to plenty of birthday parties, but never one with my name on the cake. I always wanted my name on the cake. I was seventeen, but I was second grader giddy. My mom’s gliding around the kitchen, baking a cake and putting out snacks.
“Mom pleaaaase can you do it now?” I said holding my new shirt and jeans out towards her. I was bugging her to iron my clothes.
“Boy, why you bein so damn lazy and don’t wanna iron ya clothes yaself?” said my father with his eyes glued to the TV watching some Chuck Norris movie.
I rolled my eyes knowing he couldn’t see me. “It’s because mom is way better at it than I am. Besides she has some special tricks that work way better than what I do.”
“Just give me a second, sweetheart,” she said from the kitchen mixing something up in a bowl. “I have to settle a couple more things.”
I walked over to the bathroom and started to take a piss. I started getting dizzy. I began to limply reach out at the towel rack behind the door. I uselessly flailed my arms as my temples filled with pain. I crashed to the bathroom floor with a loud thud. It felt like my head was being pressed together by those machines that crush cars at the scrapyard. I was writhing and yelling in so loudly from the pain I felt like I couldn’t hear anything around me. My mom followed by my father came bounding into the bathroom. I read my mom’s lips yelling “What’s wrong? What’s wrong!?” because I couldn’t hear over my own screaming. The last thing I remember is my father picking me up over his shoulder and galloping towards the door. I was tall at 6’2” but my dad was 6’4 and ran track in high school so he was an athletic guy. As we turned the corner into the hallway, I saw the curious brown faces poking their heads out of their doorways. The next thing I knew I woke up in the hospital with bandages around my eyes and the steady ‘beep beep’ of the heart rate monitor. My eyelids were so heavy from the drugs that I thought wouldn’t be able to open them.
“Baby, baby are you awake?” my mother choked out, I could tell she’d been quietly crying not too far from my bed. “Devin, Devin say something if you can hear me.”
“I can hear you just fine, mom. What’s going o—”
My sentence was interrupted by the door swinging open and the doctor and my father fumbling over each other’s sentences. “Is he alrig—“
“Has he woken up yet? He must not open his eyes, he must not open them!” the doctor exclaimed in one breath.
“Wait guys, I feel fine. My head feels like it’s a million pounds but really I’m alright,” the scenes from the bathroom came back to me and I even surprised myself with those words. “Why shouldn’t I open my eyes? Nothing happened to them I just got really dizzy and passed out. What’s the deal with these bandages?”
As I reached my hands towards them I felt both my wrists freeze in mid-air against my will. “Don’t you ever listen to anyting anybody eva tell yuh?” my father said as he slowly placed my hands down at my sides.
“OK…well then can I get an explanation about anything that’s going on? Why’d I have that freak out headache in the bathroom, why’d I pass out in front of the toilet and why am I not allowed to take these bandages off of my eyes!?”
I could tell my mother could hear the urgent panic in my voice because she started rubbing my head like she always does whenever she wants me to calm down. The problem was I couldn’t see her. I had no idea what she was doing, if she was standing or sitting up. If there were any other people in the hospital room besides the people’s whose voices I identified. This darkness started to worry me as thoughts raced through my head.
“Listen, Devin, we don’t want you to be alarmed. You’ve been unconscious for the past three days and we’ve been doing everything in our power to figure out what caused that migraine. We did some poking around based on what your parents told us they saw and what we could study from your vitals and brain activity while you were out.”
Doctors, man. They always know exactly what to say. They always know exactly how to give you enough information to scare the shit out of you. But simultaneously, they know exactly which details to leave out in the initial announcement so you don’t wrap a cord around your neck.
“So where does this leave me? You’re saying I got a migraine and now I’m…”
“Yes, we’re afraid so. If you can believe it though, there is good news. It’s not permanent.”
Now I was just damn confused. Such a freak-out over some temporary blindness? Party or no party, my birthday has definitely been better but going blind for the rest of my life at seventeen would have made shit a lot worse. “There isn’t a ‘but,’ and some more bad news, is there?”
“Yes I’m afraid so,” he responded quizzically. I’d seen enough ER, House and movies to know how this went. My grandmother always told me a saying they would say back in Jamaica, Always be tankful for ya life, for as long as you still have that, you can still have health. I guess if there was ever a time for me to remember that quote; it was waking up in a hospital bed. But hey, at least I woke up, right?
The doctor began to speak again, shaking off my comment, “We think an extremely rare disease may have developed within you, Devin.” My mom was over on the side staring at me wiping tears away from her eyes trying to be brave for her son. “There have been rare cases recorded of a disease called SDD, or Sensory Defunct Disorder. What we have so far is that every case has begun with a blindingly painful migraine, a few notches away from being classified as a seizure. The patients usually wake up and one of their senses has gone defunct. In this case—“
“I’m blind…” I was fucking blind. On my seventeenth fucking birthday, I had a migraine/seizure fusion and I went blind. 5% of all the fucking people every born ever. We still lived in the fucking projects.
“So how long is ‘temporary’?” I asked literally choked with fear of the answer.
“Well, we’re unsure; I believe the longest recorded time was 4 months. But the shortest was clocked in at 7 days.”
Aren’t doctors just the best? “Well, is that what I’m looking at? Hopefully a 4 month maximum sentence of being blind?”
“Yeah, and potentially the loss of one or more senses besides your sight. Deafness and loss of taste and touch have also been recorded,” the doctor gulped as he got out that last word.
I stared at him. Or at least I tried as hard as I fucking could seeing as how I could only guess where the motherfucker was standing based on his voice. In that moment the hate swirled inside me. I was awake, speaking, interacting with people around me and I was lost in an abyss of darkness. My eyelids were open under that bandage the entire conversation. It scared the shit out of me that lifting the bandages up wouldn’t make everything bright again. But wait, fuck that. I could become even more handicapped at the drop of a fucking hat.
“The last piece of good news I can give you is that none of the symptoms overlap. So if you did become temporarily deaf your blindness would have already ceased.”
How’d I never hear about this before? My friends and I watched documentaries on this freaky shit all the time. It was beyond me that I’d never heard of this in my life. What I couldn’t figure out was how a poor black kid from Brooklyn from the projects who avoided drugs and gang life up until his senior year of high school develops SDD. The strangest and most reality shaking disease I didn’t think someone could even make up.
Well, I recorded every moment of my experience with SDD. I started a couple weeks in to my blindness with audio recordings, for the smart asses wondering how I got those times down. Eventually I transcribed them, obviously not when I was deaf either, wise ass. Sorry I’m a little sensitive about that; I’ve gotten so many dumbass questions/remarks on the very same subject. But I digress.
October 11, 1997
I was out of the hospital prescribed to a circus of medicines and doing all kinds of treatments at the clinic four afternoons a week. I don’t know if I was adjusting to the loss of my sight or I just gained a microcosm of acceptance each day that passed. I felt extremely confused and vulnerable. My father never said much but he’d been particularly quiet the week that I had been home. My mother was there on me at every turn that I needed her. Of course if she was a little bit out of proximity my dad was there to get me anything I needed. He was a stoic and a quiet man, and I swore he was the only person I couldn’t sense was in the room with me. But when I needed something I couldn’t arrange for myself he would get it for me.
“Hey dad,” I said to a room I hadn’t fully surveyed.
“Yah son,” he responded. Of course he was there.
“Everything’s gonna be alright, right?”
“Yeah son, everything is gonna be fine. We’re gonna get you through this.”
Right then I did something that I haven’t done in a really long time. I opened my arms just to the room. The expression on my face was probably helpless, but I committed. The next thing I knew I was in an embrace with a man I had a tremendous amount of respect for. I don’t know why it took my sight going to want to hug my dad. But it happened, and I’m glad it did.
I didn’t know how I was going to do school, or ever operate like a normal human being again. I didn’t know how, but sometime being in my dad’s arms instilled the confidence that I would be.
November 7, 1997
So remember when doc gave me the hope that I may be blind for just a week. No fucking dice on that either. My pride is starting to get to me and I feel the urge to be more independent. The problem is when I spill the cereal all over the table instead of into the bowl it has the opposite effect. My spirit feels crushed and I feel like I’m losing to this disease. The real problem is that I can’t figure out why this happened to me. My mom took us to church on Sundays. Dad didn’t go but he always stared me right into putting on my Sunday clothes whenever I tried to protest. He just sat and watched TV because Sunday was his day off. He had diabetes, but hey at least the guy could see. The internal search for some shred of moral justice as to why this happened to me made me feel like my head was being held underwater.
My mom came in the room and took a seat over by my father. “Devin, we wanted to talk to you about school.”
“Well, what about it mom? We haven’t given it nearly as much they time as they said to see if it’s going to wear off.”
“I know that honey, but that isn’t what I was talking about. Your education is important and you’ve got one more year to apply and get accepted to college. We were thinking about enrolling you in a school for the blind.”
Any good feelings I had from talking to my father earlier fleeted out of my body. All of my best friends were at Packer High, and I wasn’t ready to give them up for jack shit. Especially some school I’d hopefully only need to go to for a short time.
“Mom, we need to think about this. The last thing I want to do is transfer schools. I just need to figure out how to handle this situation at a normal people school.”
“Devin, don’t say that, you are a normal person. Just because there’s something different about you than a lot of people now doesn’t make you any less of the beautiful son that we raised.”
“Normal, huh,” I said as I let out the saddest chuckle I think I’ve uttered. This woman wanted me to believe that I was normal. I loved my mom, and I’ve always known her to tell the truth but at that moment in time I felt like she was feeding me a lie so bad it felt like a searing scar on my body. I just needed to know that I wasn’t going have to leave my friends, and that I was still going to college and that everything was going to be okay. I didn’t need her to lie to me, my mother of all people. I got up and turned so abruptly that I tripped over the coffee table and slammed my elbow hard on the ground.
“Stop!” I screamed as I heard my parents rushing towards me from up off the couch. “Just stop!” The tears were in my eyes now. “If you think that you can just ship me off to some school for the blind because you think I’m a freak now you’re wrong! Dead wrong” I shrieked as I was bawling now. Partly because of how hard I hit my elbow complemented by surging raw emotion that caused my entire body to shake.
“I’m sorry baby, I’m sorry, we love you! We don’t have to talk about this now!”
Usually if my dad caught me letting out any feminine emotions it’d be a quick smack to the back of the head followed by a sharp, “Stop cryin like a dam baby.” It didn’t come this time. This time I could just sense him hovering over me watching as my mother held me in her arms rocking back of forth singing a Spanish lullaby I haven’t heard since I was in the crib. I begin to calm down and wonder what my father is thinking as he watches my pitiful display.
– Blindness (part II)
– Maybe small loss of taste section
– Section at full recovery at 33 years old, when finally writes book