Allison’s Brain: a testament to the human spirit

By Seema Akhtar

A life can change in a moment. Allison Woyiwada’s certainly did. She went from being an active member of our community, an inspiring music teacher, a composer, performer and director to being diagnosed with a giant brain aneurysm in December 2011. At that point, Woyiwada had two choices: undergo surgery (with no guaranteed outcome) or take a 40 per cent chance of having a catastrophic brain hemorrhage within five years.

Woyiwada bravely chose surgery. In May 2012, she had a 12-hour surgery at the Ottawa Heart Institute to clip the aneurysm. Following the surgery Woyiwada had severe comprehension, memory, speech and motor control deficits. In fact, when she was admitted into the Acquired Brain Injury Care Stream at The Ottawa Hospital in September 2012, she was assessed as having the communication skills of a one year old. And so began Woyiwada’s journey to painstakingly rebuild her life.

And rebuild it she did. Sixteen months later Woyiwada was singing in English, French and German with the Ottawa Brahms Choir, and in April 2014 she staged a children’s musical she had written with primary school students in Antigua and Barbuda.

And now, with her husband, Robert McMechan, Woyiwada has co-written a book about her journey. Allison’s Brainchronicles Woyiwada’s diagnosis, surgery and long road to recovery. The book is a tribute to the neurosurgeons who “open up your brain, monkey around in there … repair a major brain defect and make you whole again,” and the health care workers, ­ nurses, therapists, social workers ­ who “do a ton of heavy lifting after the neurosurgery team has done its deeds … and without whom Woyiwada’s story would have come to a very different end.”

Allison’s Brain is an inspirational story. It is a testament to the power of the human spirit, the power of positive thinking and the power of community to support and heal. Allison’s Brain is also a testament to the potential of music to encourage healing from trauma. For Woyiwada, the music therapy started during the medically induced coma following her surgery when her daughter, Marya, sang lullabies to her. The therapy continued with different types of music being played “pretty well non-stop” for Woyiwada in the months following her surgery. The first sign of life following her induced coma was her left hand conducting along to music. And as Woyiwada herself says, “Early days in the hospital when I couldn’t walk or talk, I was wheeled up to the piano … [My daughter, Marya,] placed the Beethoven Pathétique in front of me, and I played it, almost flawlessly.” Woyiwada began formal music therapy with Cheryl Jones, a music therapist in brain trauma and neurodegenerative disorders in September 2012. Jones used music and melody to help Woyiwada regain her fluency in speech.

The book uses verbatim excerpts from emails to chronicle Woyiwada’s diagnosis, surgery and recovery. There are weekly email updates that her husband and her daughter sent out in the year following her surgery, detailing the ups and downs of her recovery. These culminate in a week 52 update in which Woyiwada wrote that the doctors “…. were not aware that I was likely to end up being so normal when all was dealt with. I had to work hard on that from time to time, but I continued to argue that I should be normal, regardless of how long it might take me. And so I persisted ….” The book also includes many of the email responses received from friends and family, emails from friends describing their visits with Woyiwada and giving their impressions, emails from people giving advice about music or songs she should listen to (the Mamma Mia soundtrack!), or jokes she should hear (“A young child says to his mother, ‘Mom, when I grow up, I think I’d like to be a musician.’ She replies, ‘Well, honey, you know you can’t do both.’”) The email correspondence is interspersed with McMechan’s voice filling in the day-to-day details of Woyiwada’s journey.

The effect is the telling of a very personal, painful story that is also full of joy, full of the stuff of real life. And the goal? In Woyiwada’s words, “I want people to feel positive about recovering from brain injuries.”

Allison’s Brain will be launched at the Brain Injury Association of Canada’s 2014 Annual Conference at a free event, open to the public, from 5 to 8 p.m. on Wednesday, September 24 at Salon des Nations, Crowne Plaza Ottawa-Gatineau Hotel, at 2 rue Montcalm in Gatineau (www.biac-aclc.ca). After the launch, Allison’s Brain will be available online through FriesenPress and from other online booksellers.

Seema Akhtar is a mother of three and a regular contributor to the Glebe Report.