Retinitis Pigmentosa by Tobias Haglund

typewriter

I’m Saga and I live in a suburb of Stockholm, Sweden. I have a disease. It’s not fatal, but I am going blind. My doctor told me that I was slowly going blind. My mother said that my eyes were only losing their clarity. It’s true. Before it gets dark it will first become blurry. It already has.

I rewrote that intro several times and finally ended up with that one. I don’t want my disease to define me, but it is the only reason I’m slightly interesting. I was seventeen years old and I went to a public school in a county that had almost no public schools. I wore large glasses – still do – which I had to change batteries on every week. A function inside the lenses automatically adjusted to the daylight. When I started my first year of high school we were supposed to stand up in class and tell the others a little bit about ourselves. I told them I enjoyed reading, knitting and playing the piano. My teacher laughed and asked why I used past tense. She was right though. I could still enjoy most of those things, the piano made a sound and I could feel the fabric when I knitted, but I couldn’t read as well. I can still read to this day, but it takes longer, much longer.  I lose patience.

Erica, my friend – she wasn’t a friend at the time and back then I misunderstood her good intentions – asked why I wore the glasses. The teacher didn’t say anything. She just tilted her head and waited for my response. And during my presentation the entire class had kept quiet. It was the big elephant in the room. That’s why I have to start by saying I have retinitis pigmentosa. The Disease.

The follow-up question was always; how much can you see? So let me get that out of the way right now. I can see well with the glasses, not perfect but I have no idea what “perfect” looks like. There will come a day when not even the glasses can help me. I will not notice the “blurry period”, the glasses will take care of that. One day it will just become black. This means I cannot drive a car or that I shouldn’t ride a bike. I did though. Of course I did. It was a great feeling. Erica and I raced down a hill. I never told my parents, but what a feeling! When I was four, my dad took me to a playground and pushed me in the swings. I called out for him to push me higher and higher. The thrills were great. I could feel them, almost hold on to them, yea like I could grasp them. They kept pulsating in my chest and down my legs. I never had that feeling again, until that day with Erica, when we rode down the hill. I even closed my eyes for a second, breathed in and held the air. It mixed with the excitement within and I burst out laughing when we came down.

Every weekend I sat in the living room with mom and dad. My dad collected stamps, mom and I knitted and we all listened to an audiobook. They drank coffee, I drank tea. I told Erica about it and she asked me if I had to be an old woman, if there was a rule I had to follow just because I wore the glasses. She convinced me to tag along to a party. She came to my house and we got ready together.

She rang the doorbell and I opened the door. She hugged me. “Saga! Is that the dress you’re wearing? Oh my god, you look so cute!”

“Thanks.” I smiled and turned around. My mom nodded overly excited and held both her thumbs towards me. I chuckled and walked ahead. “Come. Let’s go to my room.”

“I brought make-up. I figured you don’t have a ton of it… Woh! You live in a library.”

“Ha! Yea I used to read a lot.”

She looked like she wanted to say something but didn’t. She just ran her fingers across the books for a few seconds. “You should learn how to read that blind script.”

“Braille. It’s called Braille. But yes I can read Braille. I took classes for a year and I guess I will when I’m blind, but for now I don’t want to. So how much make-up do I need?”

She quickly turned around. “I don’t know.” She reached for my glasses. “Let’s see.”

“No! Don’t!”

She took them off.

“Saga… When you close your eyes like that you look like an 80-year-old. Open your eyelids. Or at least don’t shove them together like you’re passing a kidney stone.”

I opened them and I saw nothing. Or I guess it was the opposite of nothing. I saw everything blurred together. No darkness, just a shrouded sight. She stood quiet in front of me.

“…Well? What do I need?”

“A lot of eye-shadow. Your eyes are ghost-like.”

“Oh come on.”

“Like you fell and landed with your eyes open on two ice-cream cones.”

“Chocolate?”

“No vanilla.”

“Damn.”

“Don’t worry. I’ll fix it for you.”

An hour later we left my apartment, crossed the quiet streets and passed the school yard. A few boys played soccer. The big and local  team in Solna had so many youth teams that the teams competed with each other for training hours. Two classes in my high school were dedicated just to soccer.  Not that I understood the game – I still don’t – but Erica told me that only three or four players per season would be promoted to the A-team. So it was 36 boys in those classes who wouldn’t get picked. And that’s just in my school. If you added all the schools in Stockholm it was not even one percent. I guess they didn’t think about it too much. I don’t. I am the zero point zero-zero-four percent. But a statistic like that does nothing. Just as telling the boys their chances were close to zero would do nothing.

“What are you thinking about? You like any of the soccer guys?”

“Ha-ha! What? No. I was just thinking… Never mind. How far is it?”

“It’s around the corner.”

“A bar is always around the corner.”

“What? A bar is… what?”

“No. It’s just a joke. A stupid joke. It’s from a book. Three Men in a Boat. A bar is always around the corner for one of the men. Even in heaven. He’d arrived early and he’d know a place just around the corner.”

“You know what? For you, less with the literature references tonight. Are you gonna drink?”

“No. I don’t think so.”

“Because you’re underage?”

“No it’s not that. It’s just… I shouldn’t in case—“

“In case you go blind? You know, you really shouldn’t live your life like that. But I won’t force you. Okay there it is.”

A group of boys laughed and smoked on the steps leading up to a white house. I saw Martin, a classmate, who said hello. I stood there without really doing anything. He offered me a cigarette, but I turned it down. He adjusted his cap and nodded a few times to me. Erica dragged me inside. Music from the living room was loud enough to be heard in the kitchen… in the neighbor’s house.

“Maybe you won’t drink. But I will. I’ll have a… let’s see. An apple cider!”

“Okay I can have one cider.”

We stood in the corner in the big living room. Boys and girls danced – or rather they jumped rhythmically – to a Euro-pop song. Erica bit her under lip and bobbed her head to the music. So I did the same and even added an occasional tap against my thigh. A few more classmates came, some of them danced and some didn’t. Some just came to drink, I guess, and ended up in the kitchen in different drinking contests. They bragged about how drunk they were or that other time when they were the drunkest they had ever been. I listened but Erica soon grabbed my arm.

“Come let’s dance. Not here, in the garden!”

“I have high heels.”

“Yea so? I have high heels too. Take ‘em off. It’s almost summer.”

We “mock-danced”. A few others, only girls at first, joined in. I had another cider. Plus another one and I don’t know how, but I ended up talking to Philip in the garden. The party was still on, but we were sitting on a bench in the corner where the hedges met. I guess we started talking at some point during our mock-dancing. His hair covered most of the pimples on his forehead and just like me he also wore glasses. But regular ones, of course. I made a joke about it. About not hitting the Sight-Jackpot the way I had done. He laughed a bit, took them off and cleaned them.

“I didn’t think I’d see you here.”

He put them back on again.

“Ha-ha very funny. I get it. Because of the glasses.”

He smiled quickly then looked down at the grass. “I’m sorry. I didn’t mean—“

“No it’s okay. I wasn’t offended or anything. You know what? I’m sorry, I shouldn’t have said anything. But don’t worry. A long time ago I decided comments wouldn’t hurt me. They simply couldn’t.”

“No but I mean, it wasn’t at all meant as a quote-unquote comment.”

“You seriously said quote-unquote? What are you Dexter Data?”

“Who’s Dexter Data?”

“Isn’t that the guy from the cartoon? With the annoying sister?”

“No that’s… yea sure.” We laughed. I was trying to think of another joke. He yawned and then fixed his hair.  “Want another cider?”

“What?”

“I said; do you want another cider?”

“No. I should go home. It’s past midnight.” I looked at my phone. “Actually it’s… Oh really?”

“What time is it?”

I skimmed the two text messages from mom and put the phone back.

“It’s 3.43 AM. But it’s so bright outside.”

We stood up. “Yea. We’re close to midsummer. So it’s only gonna get brighter.”

“No I mean. It’s… I have never seen the night so bright.”

“You’ve never been out so late before?”

“No. But I get what’s happening. My batteries are about to die. Oh well. It’s been nice. Nice meeting you, Philip aka Dexter Data. I guess we’ll see each other around.”

“Yes, see each other. That’s funny stuff. Quote-unquote type of quality. Are you sure you can get home?”

“Yea. I still see, but… soon I won’t. So I need to get home now.”

He followed me of course. We hurried home, but stopped outside my apartment building where we talked and talked. We could see the sunrise on the façade of the opposite building. The shadow from my building slowly crept down towards the ground. The sun finally climbed over my building, but my vision was already gone by then. He told me about the sunrise, or I wouldn’t have known. I changed the subject.

“So what do you study?”

“Music. At Adolf Fredrik’s Music School.”

“Fancy. What do you play?”

“Piano.”

“Me too. But not well enough to go to that school. So… but why were you at the party?”

“I live here. And also I know Jacob, you met Jacob right? He was the tall guy who drank—“

“Yea I think I remember him. But… Maybe not the other way around.”

“What ever could you possibly mean? He was simply thirsty. Nothing beats thirst like a barrel of beer. Hey, Saga. What dog do you think that is?”

“Oh I don’t know. I’m not so good with dogs.”

“It looks a bit like a poodle right?”

“Yea I guess a little.”

“I knew it! You can’t see!”

“You tricked me!? What kind of dog is it?”

“There’s not even a dog.”

“But you pointed to something, didn’t you? I heard something. You raised your arm.”

“Yea I did. I pointed at the trees.”

“What kind of trees?”

“I don’t know.”

“Well there you go. There are no trees either.”

“Ha-ha! I guess, they’re cherry trees. They’re in bloom.”

“What do they look like?”

“You said you had batteries at home.”

“Describe them.”

“Uhm… Cherry blossom. One of the trees is actually both pink and white. Do you trust me to lead you there?”

“Sure.”

We lay down underneath the tree. I hit my head on the trunk. He was scared I hurt myself, but I laughed it off. He reached for my hand, but as I said, I saw nothing. So I quickly moved it away. I realized he was trying to hold my hand, but the moment was gone.

“So what does this tree look like? This can be a good exercise for me. When the lights go out.”

“That’s… That sounds awful”, he said. I didn’t say anything. It was the truth. “Okay the tree. You know windflowers? The leaves and the white flowers of this cherry tree look like windflowers in a garden, but there is also regular cherry blossom.”

“Don’t say regular. Tell me.”

“Well I don’t know.”

“But tell me how you see them.”

“Pink.”

“And?”

“I guess… I guess they look like thousands of tiny flamingo heads smiling at us.”

I was quiet.

“Saga?”

I tried to hold it, but couldn’t. I burst out laughing. Then he kissed me. I couldn’t prepare myself, I was laughing and I didn’t see anything. It even took me a moment before it swept over me what was happening. Oh my lord, he was kissing me! The thrills pulsated within me like being at the top of the swings and like riding the bike downhill. I fumbled after his hand, found it and held it. I knew I’d never remember how he looked the morning when he kissed me. Oh how I would want to know! Can you even imagine my luck? My first kiss, under cherry blossom and in sunrise, and I can’t see a thing.

Erica told me her first kiss was in a closet at her boyfriend’s bedroom. It was complete darkness. But she was ten. Anyway, that was my first kiss. A bit late, I guess, but that’s it.

I’m just now reading what I wrote. That was a long time ago. I was so scared back then. Every time I changed batteries and the light didn’t start immediately I thought I was already blind. It was and still is my greatest fear to wake up in darkness. Maybe I am a control freak, but I want to know when, so I can make sure the last thing I see is worth it. Anyway, as you’ll soon know Philip and I are about to move in together. I’m pregnant now, with you. We will move in to what will be your first home. So before I pack my last things I thought I would give you this little story. You are already the best thing that will ever happen to me. Maybe the reason I write this is so you can meet your competition. Because what used to be the best thing – or best moment – was that moment under the tree. And I didn’t even see it.

We’re thinking of different names and I’m pretty sure we have settled on a name, but I don’t want to write it down in case we decide on another name. Maybe I’ll just leave a blank space and I can write in whichever name we settle on. I love you INSERT NAME. I’m kidding. That’s the kind of humor you’ll grow to love. Yes, that’s my first command as your mother. You WILL love my humor. Now go clean your room! I can’t wait to hold you, to kiss you and see your beautiful face. I’m reappy glad I met Philup, ypur fatjer. He undrestsnds me. Oh! I’m sp ezxited. I csn’t wait to sww yiur face. Plesde hyrry½ I myst see tiy.

 

Tobias Haglund

10 thoughts on “Retinitis Pigmentosa by Tobias Haglund

    • Thank you, Ana. Thanks for the kind words and the read. Luckily I do not have a problem or a disease, hindering me to write. However, I did come up with this story when I read about a person who had Retinitis Pigmentosa. I didn’t even know the disease existed so I researched it and wrote the story. Thanks once again.
      ATVB
      Tobias

      Liked by 1 person

  1. You choose interesting and challenging subjects to write about Tobbe – it takes plenty of love, skill and attention to detail to make characters convincing and you’ve done a great job here once again. Clever and tragic – well done. Cheers, Nik

    Liked by 1 person

    • Thanks, Nik. Not only for the kind words but for the encouragement I’ve always received from you as well. Thank you!
      ATVB my friend
      Tobbe

      Like

  2. Hi Tobias, we all know how much thought that you put into every single one of your stories. The effort is always worthwhile!
    You have a grasp on human emotions which you convey superbly well, leaving us with a rich and heart-wrenching experience.
    Excellent as always.
    Hugh

    Liked by 1 person

    • That’s very kind of you, Hugh. Maybe I obsess a bit too much, but it’s well worth the time when I have readers like you. I really mean it! Thanks for everything; reads,comments and encouragement, as well as advice and insights!
      ATVB my friend
      Tobias

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s