Matina works as a publicist in Los Angeles.
For New York native Julia Vittoria Matina, a 23-year-old publicist based in Los Angeles, her CPAP makes sleep more accessible.
“When I got the CPAP machine, it just completely changed my life,” she said to me in a recent interview via videoconference. “After a month, I felt a huge difference.”
Matina has sleep apnea, a sleep disorder characterized by a person not breathing for brief periods during the night. She was first diagnosed with sleep apnea in 7th grade, at age 12, after having her adenoids removed twice. Her symptoms became more pronounced during her freshman year of college. Matina found herself experiencing excessive amounts of tiredness and brain fog; in addition, she noticed a lack of concentration in classes and others would make her aware of her snoring while she slept. Obviously concerned, Matina and her mom talked to her primary care physician and a neurologist about the issues, as well as her general medical history. The doctors initially hypothesized she perhaps had ADHD since the symptoms are similar. Her care team then recommended a sleep study—a common methodology for diagnosing sleep disorders—and her sleep apnea was reconfirmed. Prior to using the CPAP prescribed by her doctor, Matina spent two years wearing an oral retainer, which she described as “pushing my jaw forward” so as to increase her airway.
“I was falling asleep during the day after work—I’d check out at 12pm,” Matina said of her experiences before getting the CPAP. “I’d be up for two hours and I was just so exhausted. I couldn’t do anything. I didn’t go to the gym or do my hobbies and do things I love doing because I was so tired and sleepy. It affected my mood.”
Matina’s friend, Braden Bales, has experiences extremely similar to hers.
A 20-year-old artist from Toronto, Bales explained in a concurrent interview to Matina’s that he’s “just kind of been learning to live” with his sleep apnea after being diagnosed with the most severe form, called obstructive sleep apnea, last year. The biggest adjustment for Bales has been learning how to manage his condition in a social sense. It can be weird, he told me, to have sleepovers and have to explain why he has to put this mask on his face (for the CPAP) prior to going to sleep. “I feel like there’s a whole aspect of having it that people don’t really talk about when you’re kind of young,” Bales said of the stigma that comes with sleep apnea. “Since it’s a condition that’s more common with older people, [the experience of] what it’s like to have it as a young person isn’t talked about.”
Matina was diagnosed with sleep apnea at 12 and wears a CPAP to bed.
For Matina, the initial shock upon learning of her condition was jarring. She cried the next morning after learning from her doctor that she’d need the CPAP. “I was really emotional,” she said. “I was really upset. I was like, ‘I cannot believe I have to wear this thing every night for the rest of my life.’ I was just very, very devastated about the whole thing.” Nowadays, she’s accepted it as part of her being, an essential component of her everyday life. “It’s a whole thing,” she told me, to force herself to wear the mask like she should every night plus perform regular maintenance on it like cleaning. The CPAP machine, however ungainly and unglamorous, is but one tool in her belt to “focus on living a healthier lifestyle.”
And what a tool. The CPAP is an indispensable piece of assistive technology for both Matina and Bales; as Bales correctly noted, sleep apnea is “dangerous” and potentially life-threatening. This is because the heart has to work harder to send messages to your brain that a person isn’t breathing, even momentarily. There is no cure for sleep apnea, so the use of a CPAP is a must for the rest of Matina and Bales’ respective lives. In Bales’ view, his focus going forward is “more about learning how to live with it comfortably than it is kicking sleep apnea.” Matina feels similarly, telling me that friends of hers have become “super supportive” in ensuring she puts on that CPAP as she’s supposed to when going to bed at night.
Like Matina, Braden Bales uses a CPAP nightly for his sleep apnea.
Bales made a video posted to TikTok in which he announces he was diagnosed with sleep apnea then proceeds to demonstrate what it’ll be like for every girl he ever brings home. Matina posted something similar from her account, in a show of solidarity with her fellow sleep apnea sufferer. Both videos went viral, with Bales’ video garnering five million views and Matina’s getting another million eyeballs.
In a broad scope, Matina and Bales’ struggles with sleep apnea illustrate a broader point about accessibility, disability, and assistive technologies. Their sleep apnea is a disability in its own right, and their CPAP machines do involve some level of technology. It may not seem so at first blush, but it’s the truth. As is often played on repeat in this space, it’s important to underscore that assistive tech is not exclusively the domain of computing devices like iPhones and iPads and MacBooks, as well as their systems’ discrete accessibility software. Matina and Bales’ stories exemplify the concept that accessibility (in the disability sense) means different things to different people. It’s dynamic and always shape-shifting.
All told, Matina and Bales both agree the CPAP betters their health long-term.
“It took me a couple of weeks to get used to [it],” Matina said. “It was so uncomfortable... my body wasn’t used to it. I would get so frustrated and keep waking up in the middle of the night. The first couple of weeks, I needed the most support from my friends and family because all I wanted to do was not wear it. After a month, I got used to it; waiting it out was the best decision I’ve ever made.”
Matina added that the presence of a humidifier in her bedroom helps her sleep more comfortably too. Ultimately, she wants to raise awareness of sleep apnea—to Bales’ point, that it isn’t limited to older adult men—and to encourage people to wear their CPAP religiously. She hopes others will “reach out” if they need help.
“Day-to-day, I just feel sharper,” Matina said of the impact her CPAP has on her quality of life. “It changed everything: concentration, how I perform at work, how I perform hanging out with friends and not falling asleep. I used to be the person that would pass out at 7pm… I couldn’t even watch a movie at night with friends. Everything is just changed. It changed my life. For that, I’m super grateful.”
