Alexandra Wasti was in her first month of studying at McMaster University in Hamilton when she suffered from an unexpected concussion, also known as a mild traumatic brain injury or mTBI.
It changed the trajectory of her life. Instead of having part of her undergraduate experience filled with classes and socializing, Alexandra spent the next year shuttling between intensive concussion rehab and a quiet, dark room at home.
"I lost a part of my life for a few years," she says.
Alexandra struggled to find treatment and a community to support her, eventually working in Dr. Robin Green's Cognitive NeuroRehabilitation Sciences Lab at UHN's KITE Research Institute. There, as a student researcher, she can work around her ongoing recovery — and her personal experience adds to her expertise.
"I give this research my all because I'm really connected to it," Alexandra says. "Because this is something that I've been through and my family has been through, I could never dream of not giving my all."
Alexandra's latest initiative, funded by a Branch Out Neurological Foundation grant, is to build and donate at least 200 concussion care packages to brain injury rehabilitation facilities.
On Tuesday, April 1, brain injury patients with chronic or persisting symptoms, their loved ones and medical professionals who treat them will gather from 1 p.m. to 3 p.m. in the lobby of the Toronto Rehabilitation Institute at 550 University Ave. to put the boxes together.
Alexandra hopes the event itself will help counter the isolation that often comes with concussions.
'You are not alone'
The packages are called Concussion Boxes and contain a handmade eye mask, ear plugs, chocolate, decaf tea and information about the Concussion Box Organization, whose mission is to fight loneliness in people with concussions.
Alexandra will also include pamphlets, information about mental health resources, upcoming patient treatment-based studies at KITE and other research institutes, and an uplifting note.
"The boxes are evidence-based, and there are studies that have shown that the individual components are important for recovery," says Alexandra, adding that includes the need for connection to a community with similar experiences.
"Patient loneliness is a major component in brain injuries."
In addition to the Concussion Boxes, Alexandra has launched the Helping Brains Heal site for people with brain injuries. The site will offer a wide range of supports, including templates for advocating for your disability, symptom tracking and lifestyle tracking, guidelines and FAQs for concussions, and links to research opportunities and organizations such as the Brain Injury Society of Toronto (BIST).
That website is one Alexandra wishes she had when she had her TBI. Like the boxes, the site is designed to make it easier for people who have had concussions to find both care and community.
"There's this enormous gap between available treatment-based research opportunities and what patients know about," Alexandra says. "My message for recovery is: these are the three steps you can take: One, find your people; two, find your experts; and three, re-visualize your life to accommodate your disability.
"But mostly, I want people to know, you are not alone."
