Worldwide, more than one billion people live with a disability, and it’s estimated that nearly half of those people have a mental or neurological disability.
On Dec. 3, 2020, International Day of Persons with Disabilities is shedding some much-needed light on invisible disabilities, as 69 million people worldwide are estimated to sustain traumatic brain injuries every year. West Park Healthcare Centre outpatient and University of Toronto Mississauga (UTM) graduate, Carisse Samuel, is one of those people.
In 2016, Samuel was 21 and in her second year of school, working towards her Honours Business Administration degree in Digital Enterprise Management, when her life changed. After suddenly suffering short-term memory loss, confusion, and eventually two grand mal seizures, Samuel was admitted to hospital where she slipped into a coma as doctors worked to find out what was wrong.
Samuel was eventually diagnosed with a rare autoimmune disease attacking her brain called anti-NMDA receptor encephalitis. The disease is usually caused by a teratoma tumour formed in women’s ovaries. Samuel had two tumours. Once a fairly unknown disease, anti-NMDA receptor encephalitis gained awareness when New York Times Journalist Susannah Cahalan, who was diagnosed with the same disease, wrote a book about her experience with it. Her memoir, Brain on Fire: My Month of Madness gives scientific insight into experiences Samuel shared.
Samuel woke up from her coma five months later and began her road to recovery as an inpatient at West Park’s Acquired Brain Injury Behavioural Services (ABIBS) and returned as an outpatient in the Acquired Brain Injury (ABI) Adult Day Program, first in person, and then virtually earlier this year. While she doesn’t recall much of her time as an inpatient, Samuel has many good experiences as an outpatient, where she worked tirelessly to get back to her old self.
“My personality changed a lot after my brain injury,” Samuel says. “My 22-year-old self was replaced with my five-year-old self. I couldn’t make decisions and had anger problems, which was a huge change from being very calm and good at reasoning.”
While relearning how to do everything she’d been able to before, Samuel continued her studies at UTM with a modified workload. Her studies proved more challenging after her brain injury as it took her longer to process and memorize information, but Samuel never gave up and received her degree at convocation in November 2020.
“Finishing school was always my motivation to keep going with rehabilitation at West Park,” Samuel recalls. “Getting my degree had always been my dream, and I wasn’t willing to let that go.”
She currently still attends the virtual outpatient ABI Adult Day Program three times a week, and plans to continue her education by working towards her Masters of Information Technology.
And while her education is incredibly important to her, the thing Samuel was happiest to regain was her artistic ability. “I’m an artist, and I was so afraid that I’d have to learn to do art again,” she says. “But I was able to do art classes at West Park and I gained a lot of confidence back when I found my creative strength again.”
Samuel still has some lingering issues from her disease, including some speech and memory challenges and overstimulation of her brain, but she has come a long way from the onset of her injury. Her new-found strength and resilience will no doubt serve her well as she continues with her education and progress.