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It could be assumed (and often was) that having no light perception would mean you slept very well. No bright lights from your roommate opening the door at 2 am, no early sunlight rousing you from your slumber in the summer, and no bright electronic screens to keep you up all night. The only difference between eyes closed and open is the feeling of lid touching lid and maybe a light breeze. That was what Foggy assumed anyway. For the first month or so of school with his very cool and very blind roommate, he hadn't been proven wrong about his assumptions. Until Matt started coming back to their dorm later and later. Maybe he was out partying or studying in a late-night cafe to be polite. Perhaps he was some super secret superhero going out to fight crime. Weirder things have happened.
Matt was not having a good month. His classes were fine, his roommate was great, but he was so damn tired all the time. Growing up, the nuns had been strict enough with bedtime that Matt kept a pretty steady schedule of 11 pm to 7 am, Not always asleep from those times, but at least in bed. When Stick got involved, he started being up and moving later and later but still had to wake up at the same time in the morning. He kept that up into college out of necessity. It was exhausting but he could cope for the most part with caffeine and meditation. Especially with classes, he needed to be awake during the day, no matter what.
All it took was one all-nighter. Just a single night to send Matt spiraling. Matt had a paper due the next day and it needed to be done. Too much coffee, one ice cold shower, and his fingertips rubbed raw from reading his terminal a little too fast, and it was over. 10 am, walking (dragging his feet) into class, he set his 10-page report about Brown v Board of Education down in the bin on the professor's desk and found a seat. All he had to do was get through the day and then sleep hard. Super easy, that was only two things.
“Matthew? Matt? Are you doing ok? Hey kid, I'm sure you have somewhere to be, class is over.”
Matt jolted awake in his seat. Turns out two things was a little hard. The professor was standing down by his desk and the rest of the room was empty.
“Oh, I’m so sorry, It won't happen again. Have a good day, thank you.” Matt muttered as he gathered his things and left to go back to his dorm to finish catching up on much-needed sleep.
The next time Matt woke up, Foggy was fitting his key in the door and giggling a little. He smelled a little like cheap liquor and like someone else's perfume, but no one else was with him. He was probably getting back from a party.
“Whoa, bud, did I wake you up?” Foggy asked in a loud whisper. Matt just shook his head and rested back on his pillow. He was too tired still to form words.
“Are you sick or something? I came in earlier and you were sleeping like one of those girls in Renaissance paintings,” Matt could hear Foggy mimicking the pose he had been sleeping in. “That's not normal, but it looked comfy so I figured I'd just let you sleep”
“Thanks, I needed it. I was up all night working on a paper and didn't get any.” Matt sat up finally and started towards the door to brush his teeth and shower. “What time is it anyway?”
“It’s nearly 2 in the morning”
“Shit.”
Being up at night was one thing, but something else was definitely amiss. Foggy had had to restock their communal advil faster than he did the past several months, and he walked in, not once, not twice, but three times in the past month, on Matt heaving and clutching a large bowl meant for popcorn. When they would walk together to their shared classes, Foggy could feel Matt leaning more of his weight onto the arm Foggy was guiding with and walking in less than straight lines, occasionally tripping or stepping on Foggys feet.
“Oh yikes, too much booze?” Foggy chuckled gently on his fourth time walking in on Matt looking ill. Matt just glared at him and tipped his head back to rest on the wall.
“Let me know if I can get you anyth-’
“I’m fine. I don't need anything. Leave me be.” Matt snapped. Foggy had seen Matt's anger before, usually directed at injustices in history and at predators at parties, but he had never been on the receiving end. It kind of hurt. But it was undeserved and uncharacteristic.
Foggy didn't often talk about his roommate in therapy. They got along great, and he had no complaints. Usually, the most he mentioned to her was if they were doing something together. But Foggy could not stop thinking about their recent interaction.
“I’m sure he just had a stressful day or something happened to him earlier that frustrated him, but I don't know why he took it out on me,”
“From what you've mentioned of him to me, I think he probably didn't mean to. I’m sure if you ask him about it he will explain. Has he been acting strangely other than that? Maybe it's just work piling up,” His therapist reassured.
“He’s kinda just been sick and not as coordinated as usual. Plus he’s staying out late recently and I think he’s missed a few classes. Maybe you're right and he's catching up on missed work, but I'm still worried about him.”
“Hmm… I’m going to give you a few flyers to pass along to him. Talk to him about it, especially if it will help ease your mind. But keep in mind, he is your roommate and friend, but it's not your responsibility to keep him afloat,” She pulled out a few sheets of paper from a folder in her desk and handed them over to him. First, a peer support program to connect with other people going through similar hard times. Second, a study group specifically built for disabled people, and finally, Alcoholics Anonymous. Oh. That made more sense than Foggy would've liked.
Foggy opened the door to their dorm gingerly. Matt was still sleeping when he left. He was still be tangled in his sheets, but he was at least moderately conscious now. He made a sleepy smile or grimace in Foggy's direction and stretched his arms above his head and yawned.
“Appointment go ok?”
“Uh, yeah I think so. We talked about you a little actually,” Matt paused, and a brief look of horror passed over his features before quickly schooling them into a carefully neutral expression.
“Oh, about the other day? I’m so sorry dude. I’ve been meaning to apologize. I was so tired and felt so gross. I don't know why I snapped at you,”
Foggy smiled a little at that. “Yeah actually. Thank you. I was gonna ask but I didn't want to push. We talked about that and about how you’ve been acting recently. This is kinda awkward but I’ve been a bit worried about you. She, uh, gave me some paper for you to go over if you want. There's one in here about some peer support, in case you're just stressed. And there's, um, one in here to talk about maybe laying off the giggle juice, not that I've ever seen you drink so much it's a problem, but you’ve been acting hungover all the time,”
Matt paused again, stunned. For a college student, he really didn't drink that much. Maybe one or two drinks if he was out with friends, one if he was out on his own, and a sip of red wine on Sundays at church. By comparison to other students, including Foggy, he was practically sober.
“Foggy, I’m not an alcoholic. You know that right?”
Foggy blinked at him owlishly.
“I see how you trip over your own feet on perfectly flat ground, and how I’m gonna have to get a new popcorn bowl before our next movie night, Matt. There's help out there. It’s ok,”
“I am not an alcoholic.” Matt doubled down. “I promise. I swear.” He was a little offended. He didn't know why.
“Ok, but if you can't come up with at least some excuse, you can see why I would think that.”
“I’m just so tired. I've been so exhausted recently that I barely feel human. I can explain everything.”
Years and years ago. When Matt was blinded, his sleep cycle got a bit rocky. No matter what he or his dad did, he would be up late into the night. His dad talked with psychologists who suggested it may be some lasting trauma from the accident, he talked with pediatricians who suggested that he reduce screen time and don't eat within an hour of going to bed. The person who seemed to get it was a 60-year-old woman in the same mobility training Matt was in to learn to use his cane properly and safely.
“Oh, yeah, sleeping while blind is a tricky one.” She joked to Matt while he was stifling a yawn behind his hand. “And it doesn't get better, you just learn to go with it,” she said with a little more sincerity. Usually, that wouldn't be a comforting thing to hear at the ripe old age of 10, but Matt couldn't help but giggle, feeling a bit of understanding.
“I can never get him asleep by the same time, he always wants to stay up” Jack chuckled. “If I had a nickel for every time he said ‘No, I don't want to go to bed, I'm not tired’, I’d have enough to put him through college… and then some.”
“Mh-hmm, I know how that feels. It took me 20 years to get a doctor to take me seriously. If he’s not in school for a bit, making a chart of when he falls asleep and wakes up might get you some help with it faster. Not that there's much they can do to help, but worth a shot.”
“One can hope,” Jack mused.
At that moment, the specialist came out into the waiting room and called for Matt, so they said their goodbyes and carefully navigated towards the office.
Matt finished telling the story and dug out an old notebook from the bottom of his personal belongings. The cover was worn and the pages were all marked in highlighter and pen. His father's slightly sloppy handwriting and wiggly lines made charts with highlighted sections showing when Matt had fallen asleep for about a year in his childhood. There were notes in the margins and spots with white-out correcting mistakes. It was one of Matt's favorite and least favorite possessions. A sample of his father's handwriting and words, one of the last things he had left of him, and the indents left from the pen meant that Matt could make out the words, but he knew every time he traced over it carefully, the oils from his skin was slowly breaking down the delicate paper. It was a log of something so intrinsically wrong with him and concrete proof that his father cared enough to try to find out what it was. He handed it gently to Foggy who held it with reverence.
“He never showed it to me when he was alive, but the nuns explained it. The chart is a 24-hour clock and the marker marks when I was asleep. I’ve been told it has a strange pattern to it. That it makes a staircase shape instead of a straight line like it should,”
Foggy studied it closely. Parts of the graph looked like the scalloped edge of an apron and there were notes about appointments and classes next to those bits. And some parts it seemed to move forward about an hour each day. Those parts were marked with notes about waking Jack up late in the night or about being hungry at odd times of the day.
“Wow,” Foggy said quietly. Matt was deep a shade of pink beside him.
“I know this doesn't explain why I’ve been so sick lately, I’ve been trying to wake up at the same time to fix it maybe, and it keeps getting worse.”
“That sounds like sleep deprivation. That would explain a lot actually. Maybe you just need to go with it and try to catch up.” Foggy handed the notebook back and Matt carefully tucked it back into its spot. His previous fear about someone else handling the artifact of his past was quickly replaced with shame.
“No, I've done fine for the past 10 years, I can push through. Everyone does.” Foggy generally regarded Matt as a pretty smart guy, but that was one of the stupidest things he had ever said. It was not as common of a problem as thinking. Oh well. Not his monkey, not his circus. At least now he knew Matt wasn't going to drink himself into a coma.
After about 2 more weeks, things were not going better. Foggy was learning that it was both his circus and monkey. Matt had snapped at Foggy 3 more times, now more prompt to apologize. All over silly things, too: the smell of onion in a late-night take-out, Foggy having a louder-than-normal phone call with his sister, and once for seemingly no reason. Plus, he caught him sleeping in more of their shared classes. Foggy could only get extra notes and assignments so much before the instructors started to notice something was off. Or worse, Matt to feel like he was being pitied and do everything in his power to avoid it (hopefully) short of dropping out.
“I’m telling you bud, you cannot keep burning the candle at both ends. You need some sleep in an actual bed instead of at a desk. My neck hurts just looking at your sleeping positions. And you should probably talk to someone in the accommodation center to ask about getting notes or some leeway on attendance or something. Smith has such a strict policy about it, I’m shocked she hasn't locked you out of class yet”
“No, there's nothing wrong. Besides, I would need a note from a doctor to get them to do any of that anyway.”
“So get that. I can go with you and vouch that you aren't just slacking for fun”
“It isn't that easy” Matt had never been one to have faith in doctors or medical staff of any kind. They had been cordial enough to him after his accident but weren't in the habit of letting him know what was happening, so he always felt a little out of the loop with them. He’d been poked and prodded and made to take mystery pills with no warning, permission given, or even an explanation of what or why more than a few times.
“Look, If you show them that chart and tell them what's been going on, they won't do nothing. They stand no chance against your sad suffering puppy eyes” Foggy pleaded. He knew he was a bit naive, and hadn't scorned doctors in the same way Matt had, but he was hopeful.
Step one of “Foggy v Matt’s Sleep Deprivation”, as he had taken to calling his plan, was very simple: Make Matt sleep. He played white noise in their room at night and made warm drinks to try to coax his roommate into falling asleep. It worked occasionally, but mostly Matt was just more focused on schoolwork with the noise and excited at the prospect of sweet, smooth, hot chocolate. Damn.
Step two was a much trickier one: Bring Matt to campus health to talk to someone about his sleeping issues. He knew that he would never go of his own accord, but he knew Matt loved carefully laid-out reason and logic. He was very much a fan of A+B=C.
A: Matt’s tiredness was affecting his performance in school and his personal life, and if left unchecked would derail his plans to go to law school and become a lawyer. B: There was a precedence of sleep issues into his childhood showing that he wasn't making it up, and that lady had some idea of it also, meaning it was likely a known issue. So, C: Matt should go to campus health with him to get whatever treatment he can and to get accommodation to get his academic career back on track.
“No. I don't want to. I don't need to. ”
Foggy wanted to rip his hair out. Matt was a stubborn son of a bitch and he was going to be the death of him. To hell with the plan. Maybe tricking him was the way to go. Matt was obviously not going to go to campus health on his own. He was one of the smartest guys Foggy knew, so it wouldn't be easy, but he knew the man had a mushy bit inside for his friends.
“Hey, I think I might be catching a cold. Tis the season and all that. I feel super gross and should probably get tested before I go home. You know my cousin has a new baby she's bringing for Thanksgiving and I can't go if I’m sick. Can you go with me in I case fall and die on my way to the clinic?” Foggy lied through his teeth. He didn’t even have symptoms, and yet.
Matt let out a deep sigh. He had just woken up and was too tired to call out the fib. “Okay. Fine. Let me wake up for a few minutes and then I will go with you.”
Victory music was playing in Foggy’s head. He knew that Matt knew that it was an ill-disguised ploy to get him to care for his own health, but it worked anyway. After about 10 minutes, he was up and dressed, slipping the worn notebook into his jacket pocket, and getting ready to leave.
The doctor's office was a bit of a bust. Foggy admitted on the way that he was actually feeling fine and that he would be there for him the whole time. He let Matt know that he would advocate for him and make sure the trip wasn't fruitless. And it wasn't. The fruits of their labor were as follows:
- A pamphlet about screen time and how it affects sleep
- Instructions to buy a bottle of 5mg melatonin
- A need to write a script for how to explain what exactly the notebook was showing
- A referral to a Pulmonologist specializing in sleep medicine
Only one of those four was even slightly useful to Matt, having already tried melatonin and not being able to see screens or even read the pamphlet. He could do with a script for the future, but that was neither here nor there. Additionally, pulmonology didn't sound like the right specialty for the problems he was experiencing, and he didn't want to see another doctor. He could admit, however, that having Foggy there did make the experience a little smoother. Sure, everyone mostly addressed the man instead of Matt, asking him questions about him as if he weren't sitting right next to him, but Foggy was quick to correct them.
“I’m not his caretaker, I’m here for support. He can answer your questions.” Damn, he felt very professional about that one.
“I’m sorry, my bad. Mr. Murdock, have you ever had a sleep study done?” The doctor was well-meaning, but the question felt dismissive to Matt.
“That's the one where they see how you're breathing and moving in your sleep, right? No, I haven't, but that isn't the problem I’m having.”
“It would be worth looking into. The specialist’s office will call you to set up an appointment to get that scheduled. Last I checked, they're booking out until next March, but they should call in a week or so. Good luck!” She got up, nodded at the two men, and made to leave.
“Wait, that's it? What is he supposed to do in the meantime?” Foggy objected.
“Try the melatonin, and if that doesn't work, maybe Benadryl. A nurse will be in to get that referral sorted.” And with that, she left.
Being up all night and sleeping through the day sounds from the outside like you’re the life of the party. God, Matt wished. After the snafu with the health center and feeling sicker and sicker for another week, he finally gave up. He could try again when he had the energy. Ultimately he felt like a failure, and he had plenty of alone time to dwell on it. He could hear Stick's voice in his head telling him to get a grip and that he was so weak for caving to his body. And his dad's voice was there too, not malicious but still sounding disappointed. "You've got to keep trying, kid. Come on, I know you can." Matt hated this.
The upside of trying to make the most of his restless night was that the dorm building was quieter than expected at night, especially in the early morning hours. All of the late-night studiers and party-goers had finally tucked in. And Foggy, who had taken to staying up with him a little, for no other reason than to socialize, was snoring gently in the other bed. Matt felt like he could walk around like this without too much interference. He found a donut shop on the other end of campus that was open all night and served some interesting things, and a 24/7 diner that was practically empty until 2 am when the bars closed and all of the drunk people moved onto sandwiches and fries for a little before turning in for the night. It was nice.
After a few weeks of staying up later and later, Matt felt refreshed. He was sleeping about 9 hours at a time, starting to swing back around to being awake in the daytime, and was no longer super irritable and sick. He had missed so many classes, although none of his instructors seemed that surprised (thanks Foggy), and he was starting to work up the courage to go to the accessibility office. As much of a blow to his ego as it was, he could not let this happen again.
Foggy stirred across the room about an hour before class. Matt hadn't attended in a while and felt like he might fall asleep in the middle of it, but today was the day. An email to someone in the accessibility office was sitting in his sent folder confirming an appointment right after this lecture. He and Foggy planned to go straight there after and try to explain the situation.
“Hey, you ready? Do you have the notes I snagged for you?” Foggy mumbled groggily.
“Yep, I read them. I have so much work to catch up on. Thank you. And thank you for going with me for this,”
“Anything, buddy. I mean it. You could ask me to do anything for you and I'd do it. Within reason of course”
“That sounds unhealthy, but I appreciate it. How long will it take to get ready? I’ve been sitting here for hours and if I have to wait any longer I think I’m going to explode,”
“Let me shower really quick and then we can go get coffee, to keep you awake long enough to get through the day.” Foggy slid out of bed, grabbed his towel, soap, and a washcloth, and left to get ready.
The difference between the health center and the accessibility office was night and day. While Matt felt like he was being examined under a microscope and simultaneously severely underestimated by the doctors, he was treated like a person here. He assumed it was because they mainly dealt with disabled people and it was mostly other disabled people who worked there, so he was less of a specimen here. He had been in a few times right at the start of the year to get his audiobooks, terminal, and braille supplies for all of his classes.
A man at the front desk greeted them.
“Hi welcome, You must be Matt. I’m John.” He turned towards Foggy. “And who might you be?”
Foggy stuck out his hand to shake. “Hi, John. I’m Foggy, Matt's friend. I’m just here for support.”
John put his left hand out, turning it at an odd angle and shaking Foggy’s hand firmly. Foggy glanced down and noticed that John’s right hand only had 2 fingers and was much shorter than his left. Whoops. But John seemed to take it in stride.
“Marla will be right out in a few minutes. She’s printing some documents for you and getting her papers together. There are chairs behind you and a restroom down the hall to your right if you need.”
“Thank you” Matt smiled and navigated back to find a seat.
After a few minutes, Marla came out to call them back to her office. After sitting and getting through pleasantries she finally got to the root of their meeting.
“So, Matt. You said that you are having trouble attending all of your classes and are suspecting a sleep disorder but don't have a diagnosis yet.”
“Yes. I went to the doctor about it but they were less than helpful. I have an appointment to see a sleep specialist in March that I am not optimistic about.” Matt said.
“You should show her the notebook.” Foggy nudged gently.
Matt pulled out the book full of sleep charts and passed it over to her, trying his best to explain.
A look of recognition passed over her face. “Oh, yes, I’ve seen this before. This looks like your internal clock isn't synced. We have a few other blind students whose schedules look like this.”
“Wait, really?” Matt could not believe it. He half thought that maybe he was just making it up in his head. Hearing that there were other people, especially at this school, who had the same problem blew his mind. “What is it? What causes it?”
“Legally, I can't tell you exactly what it is. I’m not a doctor. But I can tell you that it's really common in blind people, especially those who have no light perception, like yourself. Something about not having the sun to cue things like waking up and going to sleep, I think. I’ll tell you what,”
Marla slid the papers she had printed before they came in toward the pair. They were thick and embossed with braille. The title of the first document read “Accommodations Change Request.” Matt gripped Foggy’s hand a little harder than he meant to.
“We can add lecture recording under your existing accommodation related to your blindness. That's about the most we can do without official documentation. You still have to keep that appointment with the sleep specialist and email me whatever they say. If they don't say anything helpful, go back to the doctor and ask for a referral specifically to sleep neurology, they can probably help more. I’ll send you some documents about those changes, so you can read them, sign them, and send them back to me. After that, It should be about 3 weeks before it goes into effect. Your instructors may email you with questions or clarification. Feel free to tell them whatever you like or tell them to talk to me.”
“Wow.” It was Foggy’s turn to be shocked. He'd been into the disability center once or twice, but now he could now see the difference in how Matt was treated. This was wonderful.
“Thank you so much. I really appreciate your help.” Matt put his hand out to shake her hand and she shook back firmly. Foggy and Matt were practically vibrating as they walked back to their dorm after that, both so excited and happy.
Matt flopped onto his bed. It had been an exhausting day and he hadn’t expected any progress to be made. He was so relieved. Now that the adrenaline was subsiding, he was tired again. He opened his computer to find an email from Marla.
“Hi Matt,
I attached a summary of what we went over today. I also attached the change request form I showed you today. Please get it back to me as soon as possible so we can start processing it. Have a good day.
Marla M. (She/Her)
Columbia University Disability Services”
He skipped the recap and opened the change form. It was nearly identical to the form filled out at the beginning of the year, with his blindness level already marked and his current accommodations listed. He quickly edited to check the box for audio recording lectures. He added his signature at the bottom and sent it back. It felt like a weight had been lifted off his shoulders and he fell asleep easily.