Spending the Holidays Inside

Foreword

This might actually be my first non-mature story, a one-shot written in 2019 for Disabled-Dreams' Christmas Story Competition. At the time, I'd been inspired by some disability stories with great character work. This has been a through-line now, to pair a disability I want to explore with a character study, but in the past it was plot-first and much more severe.

Around 2019, I made friends with some people who were into skin-sealing and "nulling", and separately, I had been exploring the way people unconsciously react around those with facial disfigurations. I wanted to explore the reality of what someone who was "nulled" or "faceless" would have to deal with day-to-day if this kind of plastic surgery was handled "realistically", and I think this was my second attempt. What resulted was an exploration of deafblindness, handling trauma, and finding a new normal.

Enjoy!

Spending the Holidays Inside

I let my hand graze the mottled wall, stepping carefully into darkness. Anything could be in front of me. All I had to guide me was my memory of this path taken day after day, through the dark. No... not dark, less than that. With each passing moment I counted, "8... 9... 10... 11...," counting each step before my fingertips left the safety of the orange peel wall to reach out toward nothingness... fear... the lurching weight in my stomach... what if I missed it... miscounted... fell...

There! The handrail was exactly where I thought it would be, as I headed downstairs to greet my visiting family on Christmas Eve.

Step by step, the mental map of our home lined up, fingers grazing a doorway moulding here just as the hardwood stairs gave way to tile. I had made it to the entryway without stubbing my toe! This was good, as I usually left my cane by the front door: it wasn't worth the hassle indoors. You never knew with visitors, where their winter coats might lay, hats, gloves, the lot. Hopefully Dad had given the talk to my cousins, because it's not like I could.

I paused for a sec, feeling the cold tile drain all the warmth from my feet. I missed wearing cozy slippers, but it was easier this way, less mistakes.

There was a bump, a vibration.

Another.

Hmm.

I took a right toward the kitchen and living room, back onto hardwood, my hands careful not to bother the shelves of knick-knacks and souvenirs that people with sight decorate their lives with. That said, my room was still covered in posters from high school, shiny rocks and 'Get Well Soon' cards, along with all my old books and CDs. I had to get those off to Goodwill eventually, put the rest in a box for the basement. I'd keep the rocks though, just appreciate them differently.

Another vibration, this way had been the right choice. It seemed like everyone was in the living room by the TV, or hovering by the kitchen.

I was almost a natural at this now, and even today, months later, I hated thinking that.

Suddenly I felt stomping approach before being engulfed in hugs and kisses from... someone. It was fine, I didn't really need to know who as I freed my arms and signed to the room, "I'm feeling happy! Hello, Merry Christmas!" I had asked my teacher about that last one a week back, practiced it until I signed it confidently, fluidly. My aunt and uncle didn't understand sign language, but Mom must have translated out loud, as I felt a blur of air and more arms were wrapped around me. I could feel their voices conducting into me but had no idea what they were saying. I think this was my aunt, or my cousin Julia, who must have really grown up since I last saw her.

Hmm, it had been a while.

Of course the old me would've picked up on Auntie Faith's perfume a mile away but this new me still couldn't tell. I held them tightly all the same, before realizing I was totally turned around! I had lost my orientation in this maze! "Okay, don't let yourself panic again," I told myself pointlessly.

Once the greetings had died down, I put my arms out a bit, hands hanging, and waited. I was nearer to the living room than the kitchen island, I knew that. Closer to Dad and Uncle Henry likely watching the football highlights from yesterday, chatting about how this or that team would fare in the morning. Or everyone was just staring at the girl standing there, lost in her own home. God, I must look like such a freak. I didn't usually care, but we also didn't usually have people over.

I waited there.

Two hands finally found mine, Mom's soft and delicate ones, the ones I knew so well, warm and a bit wet. She was cooking. My fingers glided over hers as she signed a little bit slower than I did casually. This was how I listened, how people translated the world for me: tactile ASL.

"Starting dinner now. You want to join?"

I shook my head and brought my index, ring, and thumb together, "I'm feeling shy, and tired. No," before pointing at my stomach, feeling the PEG tube taped there under my sweater. Sometimes it was simpler not to say anything.

My fingers rested back on her hands as they flew about, "You should join us. No one cares about the tube, we are family. Us all together for Christmas dinner, at least."

It was a little fast, a little hard to understand, but I caught the gist. My mom had the benefit of video courses to learn from, her vocab was already miles beyond mine.

"No. I'm at a good part of my book."

"Family is here, and you've read all those stories already."

"Not since before."

To the room it probably looked like my head was down a bit, not paying attention as she played with my hands, but I was trying to focus on every twitch of hers, squeezing here and there, asking her to repeat. As I fought her, whining silently about ruining Christmas, about how I wouldn't have come down if I knew it was so close to dinner, the air flowing through my open tracheostomy tube rose to a whistling sigh.

I could tell when it resonated, the little vibration and tickle under the neckband keeping it in place. "My teenage choker phase again," I had quipped once. Mom said her and Dad laughed out loud at that one, now they slap or rub my thigh so I know right away. Anyways, apparently the little plastic tube that kept my airway clear whistled slightly when I sighed, my Mom called it my 'white flag.' And as usual I lost the fight, hands passed off to my Dad's firmer grip to lead me slowly to the dining table while my mom likely finished serving.

Sitting there, hands on the smooth table cloth, tracing the silverware, the empty plate, I felt a tap on my shoulder and my dad's hand led mine to the IV pole which had appeared by magic next to me in the dark. A heavy bag was placed in my lap, while he fidgeted with my tube and I waited for my Christmas dinner. I lifted my cozy sweater up a bit and thought back to my first week home from rehab, from that unfamiliar cold room with every surface catering to a different tactility. I was later told it was mostly used for blind autistic kids. Bumps on the ground leading to the bathroom, different textures on every handle and knob to help identify where in the room you were, and one wall just a cold, smooth window. An oversight on their part, as it just served as a reminder, a piece of glass through which everyone could see the girl with no face, and she could see nothing of the view. I sighed, making my dad rest his hand on my lap for a second before continuing to flush my line, a little cool feeling entering my tummy.

Oh right, the first week back... my mom had cooked a wonderful dinner, I can't remember what, I hadn't seen, and had the bright idea of blending me a serving so I could partake, loading it into a bag and letting it gravity-feed into me. A clogged line and a trip to the hospital later, my Christmas dinner was now brought to you by Ensure! Or some other brand. You could hand me the can or bag and I wouldn't know. I held back my sigh this time. It's not like I could've tasted it, and it had to be healthier than a plate full of gravy.

Dad kept fiddling with the clips. Mom usually attached my line.

At least I didn't have to hear all her nonsense excuses and apologies for 'ruining' the obviously expert-made turkey, that was one good thing. Every year, Thanksgiving too: "I think it's a little dry, is it a little dry?" My mom had mastered the guilt and humblebrag, all at once. I chuckled a bit.

Actually... I take it back. I would still want to hear that, all of it. Even to hear her sing gross top 40 in the car, I don't care.

Dad finished up and patted my shoulder to let me know it was all good.

"Is anyone in the room?" I signed, and his big hands appeared in mine, signing each letter, a little clumsily.

"J-E-B." That was okay, Uncle Jeb was probably talking my Dad's ear off about football or golf as he arranged my feed tube. What kind of daughter would I be to make him forgo that while tending to the banality of this new life?

"A-N-N-I-E" This I was left a little unsure of. The younger of my two cousins was nearing fourteen, and while we had been fine-enough friends before, I had always been closer with her sister, us being the same age and all. I guess she could see behind the great curtain of Oz on this wonderful St. Nick's Eve.

"W-I-L-L."

What?! I flipped out, covering my exposed stomach (and the crotch I thought might have been outlined by my leggings, just in case). "Who?? I'm feeling angry. You should say when new people are here!" I nervously signed before tracing the end of my trach tube, round and round, feeling my rapid gasps shoot in and out.

But Dad took my hands from their awkward fidgeting, a little roughly, and replied, "Boyfriend, J-U-L-I-A. Relax. Relax. Relax. Trust me, he was good."

He wasn't the most fluent but I couldn't blame him, he was still taking classes after work. And it got to the point. My dad always knew what to say, I just had to fill in the long version for him now, imagine his voice, the memory of the sounds now mixed in with the texture of his skin, it was so weird.

But have you ever tried to relax? It's impossible! Even worse when Mom had taken me to the mall shortly after getting home from rehab, only to find out that her once-vibrant daughter now got crippling panic attacks. My right hand went up to bite on my nail but hit smooth plastic. Damn it.

At least I had put on my mask. The thought of anyone seeing the what was underneath, the nothingness, the scars. I nearly shuddered. I had never seen them myself obviously but my hands had told me enough. There wasn't much left to look at. And there wasn't much left to bite my nails with.

Eventually I did calm down, and I could feel the gravity feed filling my stomach, slowly. It would take me much longer to ingest this than everyone else to inhale their mashed potatoes, but refilling syringes was complicated without my sight and I wouldn't want to distract from dinner by asking for help over and over.

The ground and table were vibrating, everyone was sitting down taking their places.

Why did they even have me sitting here? I had only wanted to say hi and get back to Hogwarts. I mean they had their movies and shows, I wanted to get back to mine! I was slower in braille, sure, but it was one of the few methods of entertainment left to me.

My Dad came back and I jolted in surprise. "Sorry. Just saying I am to your left, at front of table."

"At the head of the table." I corrected him, slowing the motions, touching the bottom and top of my mask.

"Yes. Head." He tried, my hands following his, guiding a little bit too. "J-U-L-I-A is on your right." I felt a vibration from him, saying something, and then another hand rested gently on my thigh from her direction.

"Thanks." I said, leaving his hands to grasp hers, hold on for dear life, tell her I recognize her, my old friend, my favorite cousin who used to call every other day before I left for college, before I got busy, became a bad friend. Before I lost a voice to say 'sorry' with. But I also couldn't tell her by signing, so I reached into my pocket and got my old blackberry out, as she let go, probably to grab a bite from her plate or talk to Will. I wonder how far along they were.

This old thing was a bit of a chore, it had taken forever to learn, but it was really useful for just these moments. One of Dad's old work buddies had found it in a box, from before the company was passe, and after hearing about me he had wiped the old apps from it, coding a simple program to stay open, take notes, and give feedback through vibration. It didn't even text or have BBM, it was just one thing so I wouldn't get lost in menus. I don't think the screen even lit up unless you hit a special key, which made its battery last ages.

It was a morse translator, of all things. I was a walking telegraph.

I texted by feel on the little keys, "It's really good to see you!!!" and handed the device to her general direction before it was taken and I had to busy myself running my hands along the silverware again, or twirling my feed line like I used to with my hair. It took a while to get back, Mom or Dad were probably explaining how to use the relic. I missed my iPhone, but touch screens to me were like holding a useless brick of metal and glass. I was too far gone for even their accessibility features.

Finally it was placed back in my waiting hand, and I pressed the call button, triggering a flurry of pulses (at the fastest setting of course).

·-- ·--· · / --·---- ------ ··-- / -- ·--· --·---- ·· --· ----· / -- ------ / --··· · / ··--· ··-- --· --· --·---- ----··---- / ·--·· ·-- ·--· ·· ··----··

"SEE ME? ARE YOU TRYING TO BE FUNNY, LARI?"

I laughed a bit, the breath puffing out of my neck. Only Julia ever called me Lari, she had always thought it was the funniest thing. Larry.

"OH NEVWR. YOU MUST BE HEARING VOICES OR SOMETHING." I handed it back quickly, it was easy to get into a groove.

"OMG, YOUR HUMOR IS WAY TOO DRY FOR TEXTING."

"WEL ITS ONLLY WORSE IN ASSL."

"OMG YOU DID THAT ON PURPOSE."

"?"

"ASSL?"

"DEFINITELY CALLING IT THAT FROM NOW ON," I texted, handing it off to Julia, but she paused and put it right back in my hand.

Confused, I pushed it back, before Dad grabbed my hands and signed, "Check your write, love."

Embarrassed and confused, I pressed the call button, sending a flurry of gibberish into my hand,

··--· ·--· ----· ------ ---- ------ --·---- ·--· # ··-- / ···-- ··· # # ------ ---- ···· / ------ --·---- / --·---- ·------ ··· --·---- / ----· -- ·----· ----··---- / ---- ·----· · / ·----· ----

"FRGOMOYRU VSOMH OY YJSY GTP, MPE PM"

Shit, I had gotten too excited and lost my place on the keyboard. I pounded my fist on my knee. I did it again, actually hurting a bit. And on the third time I hit the table and clipped the empty plate, feeling it break!

I held my hand tightly and swore in pain. 'Fuck!! Fuck this!!!' I screamed silently, barely noticing the increasing activity around me, my mom now there, grabbing me from behind, her touch the final stitch keeping me from breaking down completely.

Fuck, I told her I would ruin Christmas.

"Stop, L." Mom signed my name, a swirling point toward my heart. As far as name signs go it wasn't too original, I had been told. "Stop. Stop. Stop. You're going to pull your tube."

I didn't want to stop but that made me focus. Even catching the plastic on bulky clothes could be uncomfortable, sometimes painful, and if it disconnected we would have a mess all over, one someone else would have to clean up. I tried to breathe slowly as she wrapped her arms around me and I cried. Obviously I didn't get any tears out, but she could tell by the way I shook in her embrace. I put a hand out toward Julia and squeezed the hand I found before signing to the open air, "Tell her it's not her fault. I'm feeling frustrated/mad/sorry. I think I cut myself."

Dad's hands found mine flailing in the dark. "Already did. Relax, L."

A band-aid for the tiniest cut ever, a million clumsy "I'm-fine"s later, and dinner had all but wrapped up with everyone back in the living room judging by the stillness of the air, probably watching Charlie Brown or Rudolph while I sat by my dripping formula. I could've taken it anywhere in the house, but what was the difference? I could've gone up to my room to read but then the IV pole would likely bang up the stairs, and I was tired of making a scene I couldn't even witness. It was honestly crippling to know that I could be making a ton of noise, annoying everyone, and have no idea.

Besides, I hated to admit it but my little exchange with Julia had been refreshing. Different than texting before, obviously, but nice.

So I just stayed at the dining table, tracing the blackberry's keys in my lap, practicing letter by letter, feeling the pulses.

A hand found my shoulder and I jolted! Some people didn't make too much wind about them, and it always caught me off guard. I texted, "WHO IS IT?" before checking the morse and judging it good enough to hand off... to the open air.

A reply came back.

·------ ··-- ·--·· ·· ·--

"JULIA"

I relaxed and felt her sit down next to me.

"IM SORRY FOR FREAKING OUT." I handed back after double-checking and fixing a typo.

"OMG DON'T EVEN. I THINK YOU'RE ENTITLED TO FLIP AFTER THE YEAR YOU'VE HAD. I SHOULDN'T HAVE PUSHED BACK AS IF YOU COULD UNDERSTAND, I WASN'T THINKING."

"ITS OKAY," I typed, before adding, "IS YOUR FAMILY AFRAID OF ME?"

Julia didn't hesitate to lean in and hug me, her shoulder nudging my trach tube uncomfortably, but I didn't care. She pulled back to type then handed me the blackberry to feel the pulses, "YOU'RE INSANE, LARI." before taking it right back and adding. "YOU'RE STILL THE SAME TO US."

I felt the short pulses and shook my useless head. "THATS A LIE," I texted, before reaching up to take off my mask and show her how wrong she was, show her what the doctors had resorted to instead of a risky face transplant. But as soon as my fingertips met the smooth plastic, Julia's hands stopped me. "No!" I shook at her. I wanted to show her what was under the flat expanse of plastic, featureless to me, not even a nose, apparently printed with an old picture of mine on the front (which one I still don't know), but Julia's hands stopped me again.

I tried to no avail, before she forced me to take the blackberry, shoving it into my grasp.

"LET ME TEXT!!!!" the phone dotted and dashed.

Knowing morse code's limitations, and knowing Julia, that was probably in all-caps if I had to guess. I handed it back and waited patiently, something I had much practice in. I eventually reached up, not to try exposing myself to her again, but to feel how heavy my bag was. It was about a quarter full. I still had half an hour or so to go.

Getting it back, I had to play the long message twice and then slow it down the third time just to understand it all.

"I'M NOT TALKING ABOUT YOUR FACE. YOU'RE STILL LARISSA IN THERE, RIGHT HERE NEXT TO ME AS I TYPE. IT'S SLOW, I HATE IT, I KNOW YOU DO TOO, BUT I NEED YOU TO KNOW I DON'T HATE YOU. NOT FOR LEAVING WHEN I COULDN'T GET INTO COLLEGE, OR FOR LOSING TOUCH, OR FOR WHAT HAPPENED LAST MARCH. I MEAN HOW COULD I? BUT I'VE BEEN SENDING YOU MESSAGES THE LAST 6 MONTHS, AND HAVEN'T HEARD BACK AT ALL. HAVE YOU READ THEM? I KNOW YOU HAVE THE COMPUTER THING FOR READING. SORRY THIS IS LONG."