As I look back at the footage of my sister's recovery, I feel bittersweet about the time we spent together. While it was scary and unpredictable watching her body fade, I'm grateful for the long days we spent in the hospital. For eight weeks we were kids again, spending our days talking, reading books, and sharing a bed. We were roommates in summertime, going for long walks and adventures, making memories along the way, and sharing moments that will forever live in our hearts. So while I can’t say I’m happy Evelyn got sick, I’m grateful for the time it gave us. But let’s go back to the beginning.

 

On Thursday, May 31st, 2018, Evelyn woke up with numb toes and a sore back. Thinking it was caused by physical exertion at work, she decided to rest and ice it until it felt better. By Friday the numbness had spread to her feet, and by Saturday it had spread to her hands. The back pain made standing uncomfortable and she began to think that she had pinched a nerve. On Sunday, my parents took her to the Sunnybrook emergency department, and after 8 uncomfortable hours of waiting, a doctor told them to go home because it was just a “funny feeling.” By Monday Evelyn was having a difficult time walking, her back was in unbearable pain, and she was napping on the living room floor because stairs were out of the question. After describing her symptoms to several family physicians, there was a consensus that she needed to be brought back to the emergency department.

 

On Monday, June 4th, Evelyn was admitted to St Michael’s Hospital under the suspicion that she had a rare autoimmune condition called Guillain Barré Syndrome. That night, she got an emergency MRI, they did numerous rounds of blood work, and she underwent multiple rounds of reflex and strength examinations. The next day, they performed a spinal tap and an EMG to confirm the GBS diagnosis, and the following day she began her IVIg treatment. Before she left St Mike’s, the paralysis had spread up her legs to her waist, up her arms to her shoulders, and it had crept across half her face. Thanks to early detection and aggressive treatment, she never required a catheter or a respirator, which is common in many cases of GBS.

 

After two weeks at St Mike’s, Evelyn was admitted to Bridgepoint, a highly coveted rehabilitation hospital in Toronto. Once there, she was put on a floor where they specialized in neuropathy physiotherapy. She would call this floor home for the next six weeks. Her routine consisted of physiotherapy 5x a week (3x in a gym, and 2x in a pool), occupational therapy daily, sessions with a social worker and psychologist, and seemingly back-to-back visits from nurses, doctors, and specialists every day.

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Evelyn spent a total of 8 weeks in the hospital. While it felt like an eternity at the time, we were lucky by its brevity compared to most typical cases. Had we waited longer, had treatment been delayed, had we not been in contact with the right people at the right time, we don't know what would have happened. But for now, our focus is on spreading the word of this illness. If patients know early symptoms, if doctors can recognize key milestones, and if loved ones can advocate for the right care, we can help future families recover sooner.

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