Imagine that there are 50 radios on a table. Jazz plays softly on one. On another, rock is playing at normal volume. On the next one, the pop sounds. Each radio overlaps the others, one louder than the next.
This cacophony of noise is how Allilsa Fernandez describes her life with post-traumatic stress disorder, or PTSD, and psychosis.
“I just learned to live with it,” said the 35-year-old. âVoices never go away. ”
According to National Institute of Mental Health, psychosis is a condition in which a person has a loss of contact with reality – experiences paranoia, visual hallucinations, and hears voices. On 100,000 adolescents and young adults in the United States experience their first episode of psychosis each year.
For much of his life, Fernandez’s mental illness made everyday tasks difficult.
Brushing her teeth was difficult as she couldn’t recognize the person looking at her in the mirror. Fernandez avoided driving because she was afraid of hitting someone. A 30-minute homework would take her five to six hours because she had to reread the same sentence over and over to absorb the information.
Going to the bathroom was almost impossible. Because of her paranoia, she felt like everyone was listening to her. As she sat on the toilet, she could hear her neighbors’ conversations and was terrified that they could also hear. She refused to go. It got to a point where she considered bringing a bucket to her room to urinate.
While a student at Stony Brook University in 2008, she suffered a life-changing injury. Fernandez lived in a small apartment on the second floor in Port Jefferson, which she shared with two other tenants. She was organizing her room and had to store a few more things in the attic. When she got to the top of the stairs with some luggage, she slipped on a wooden beam and fell through the plasterboard.
Her body hung from the ceiling; the ground was 10 feet lower. What was a five-minute ordeal seemed like an eternity to him.
“I had two options, either give up and end up in critical condition or pull out and save my life,” Fernandez said.
She managed to pull back, but the incident left her motionless for months and she had to walk with a cane. Fernandez has retired from college and would not return for seven years. She used this time to focus on healing both physically and mentally.
Fernandez got involved in Second Life, an online video game similar to The Sims. Between 2010 and 2014, she met many people with mental illnesses through this medium. She credits her recovery to the support she received from her peers.
âWhen I heard voices, they told me to put on headphones and listen to music,â she said. “When I felt I was dissociating, they told me to grab some ice cream and hold it, so the shock would bring my brain back. I learned these [rehabilitation methods] peers, not professionals.
When Fernandez returned to Stony Brook after her break, she wanted to create an environment similar to what she had experienced in Second Life on campus. Two years ago, she founded Peer Mental Health Alliance, PMHA, an organization that provides peer support to students struggling with their mental health.
âAllilsa is doing all she can to disseminate and disarm the stigma against psychological conditions,â current PMHA president Alex Sindo said of her predecessor, whom she describes as a mentor and friend . “She always does all she can for the community.”
Prior to PMHA, Fernandez felt that pre-existing mental health-related clubs were not meeting his needs. This alliance does advocacy work, connects students to on and off campus resources, and participates in rallies.
âMental health is not something to be ashamed of,â she said. “So I decided to start a club where instead of people coming to see us, we were going to go up to them and normalize the conversation.”
One event, in particular, was very significant, in Fernandez’s opinion. The students were given headphones that played voices at different levels at the same time. During the simulation, they were asked simple questions: What is your name? What is 2 + 2? What state are we in? Ninety percent of students had to take off their headphones because they found it too difficult.
âYou can take the headphones off, but the other students don’t have that opportunity,â she said. As someone with psychosis, these symptoms were all too familiar. âThis is what they deal with and live with on a daily basis. “
Fernandez not only advocates for mental health at school, but also within his family.
Her cousin, Arlene Perez, describes her family as an “old school Dominican”. They grew up in Brooklyn and were raised Catholic.
“[Fernandez] explained to our families, even our elders, that mental health is just as natural as high blood pressure and diabetes, and can be treated with therapy and support, âsaid Perez.
Around this time, Fernandez’s mother fell ill and she became his babysitter. She was only 15, the oldest of three children, and had to grow up quickly to support her family.
âShe’s a survivor; she endured a lot of pain, âPerez said. “My cousin graduated from college, when she was set up to be medicated for life at home for doing nothing on her own.”
Fernandez completed his bachelor’s degree in psychology in December, with magna cum laude. After more than a decade since first enrolling at Stony Brook, she’ll finally be walking during graduation in May, what she calls “a dream come true.”