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Redefining recovery with post-concussion syndrome

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Kanika Gupta
Kanika Gupta, who lives with post concussive syndrome, uses art to express her definition of recovery.

When Kanika Gupta suffered a concussion after hitting her head in February 2013, she was expected to recover in two days.

But days turned into weeks, and weeks turned into months with persistent symptoms, such as fatigue, chronic headaches, and sensitivity to noise, light, and smell. The high-energy life she once led was put on pause.

"For a long time I existed in this transitionary period where I was holding on to the hope that if I gave it enough time I would be able to do everything the way I used to," says Kanika.

Nearly five years later, the 31-year-old has stopped waiting for her symptoms to subside. Instead, after discovering an affinity for art, she has redefined recovery and gained a new sense of grounding.

"To me recovery isn't about being symptom-free. It's acknowledging that you can function in an entirely different way."

"I want my body to grow stronger and heal every single day. That is absolutely my goal. But my happiness and ability to pursue a life that is filled with purpose isn't tied to that," Kanika explains.

"The process of creating art allowed me to make that distinction."

Kanika, who used to run a social enterprise, is now devoted full-time to her craft. She takes frequent naps to address fatigue and avoids crowds, restaurants, parties, and other over-stimulated environments her brain can't filter. Sunglasses dim the daylight, and earplugs silence everyday noises, such as traffic and ring tones she has trouble tuning out.

Kanika's first art exhibition, titled ReThink Recovery, is on display in Toronto until Dec. 2. It is her way of explaining her recovery journey to family and friends, and sharing her perspective with other post-concussive patients.

What is post-concussive syndrome?

Kanika Silence
Kanika, who wears earplugs to block out everyday noise, has found beauty in silence.

Post-concussion syndrome (PCS) occurs when an individual continues to experience symptoms past the usual trajectory of recovery, which is one to two months. It affects between 10 and 20 percent of the post-concussive population.

"PCS is a very controversial syndrome because we don't know exactly what causes the prolonged symptoms or why it happens," says Dr. Mark Bayley, Medical Director of the Brain and Spinal Cord Rehab Program at Toronto Rehab, and Kanika's physician.

"Women appear to be at a higher risk than men, as are people who have pre-existing neurological or mental health issues. But we don't yet know how much of it is caused by the blow to the head and how much is caused by other factors you have in your life."

This is what Dr. Bayley and the team at Toronto Rehab's Hull-Ellis Concussion and Research Clinic are trying to understand. What makes this clinic unique is it recruits patients right after their injury, so they can be monitored immediately and followed sequentially.

"Some sports clinics do this, but we are the only clinic that sees a general population of people with concussion from various causes," says Dr. Bayley.

The care team believes if they follow people closely right from the start they will understand the normal trajectory of recovery and what factors lead to a worse prognosis.

"If we could recognize someone like Kanika, who is going to have persistent problems, perhaps we could offer different interventions from the start to prevent persistent symptoms," Dr. Bayley says.

When art imitates life

Kanika Ceramic Bowl
This pieced-together bowl illustrates no matter how hard you try you can’t put pieces back together the way they use to fit.

Kanika's exhibit uses a variety of mediums to take audiences through her stages of recovery.

"My family and friends are sitting on the sidelines, waiting for me to recover," she says. "I'm excited to welcome them into this space, and show them that, yes, I deal with all these symptoms and restrictions, but it doesn't make me any less of who I am."

Today, Kanika sees Dr. Bayley every six months at Toronto Rehab's Acquired Brain Injury Clinic for a check-up and to keep her finger on the pulse of new research. But she's not searching for answers that she knows don't yet exist.

And that's her message to other patients living with post-concussive syndrome.

"I want everyone to challenge their own definition of recovery, and in the process, my hope is that you'll see yourself, and how the facets of your life can be rearranged in a way that can make you feel whole again.

What does Dr. Bayley think about Kanika's definition?

"We always strive for full recovery. However, it's a reality of many injuries, including concussion, that sometimes you'll be left with longer-term difficulties. Working around them and having the best quality of life is what we do in rehabilitation every day."​​

picture of an open door
The right-dominant artist used her left hand to draw a picture of an open door - a metaphor for being open to new opportunities.

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