Prior to 2009, Zehra Madenli was an active college student, studying Fashion Management at George Brown College in Toronto. She was talkative and outgoing, and loved spending time outdoors. Everything changed when Zehra was diagnosed with ALS. Within 12 months of diagnosis, she lost the ability to move and speak.

Day by day, Zehra lost function of something new: one day it was her left arm; the next, her right arm. Then, her legs stopped working and she required the use of a wheelchair. Eventually, her voice gave out, but she refused to let this silence her.

Using only her eyes to type, Zehra has written hundreds of blog posts, some of which recount her journey with ALS. Some are poems, some are children’s stories, but most are love notes about her husband, Sinan.

Zehra and Sinan hugging and smiling at the camera“If I could express my thoughts and how I feel in my words today,” she writes, “it is because of my husband Sinan’s extraordinary efforts of arranging and facilitating a computer that I can use with the help of my eyes. With all my feelings of personal rebellion and screams, my sorrows and my acceptance, my tiredness from my battles within, I am forever grateful to my husband for all he has done for me.”

 

The love between Zehra and Sinan is what has kept them going over the past nine years. Particularly for Sinan as Zehra’s primary caregiver, life hasn’t been easy. He suffers from depression and caregiver burnout, struggling with the physical demands required by someone living with ALS – demands such as moving wheelchairs and assistive devices.

“After we learned the diagnosis, I went into an emotional tailspin,” he admits. “To this day, I cannot recover from it. But Zehra has a strong connection with life, which is what keeps both of us alive. She is trying to live life as best she can, and although it is difficult for me, the only thing I can do is support her in her adventures. We live for the moment, with no plans or expectations of what the next day will bring.”

ALS has taken so much from Zehra and Sinan, but like many others, they have chosen to give instead of focusing on their losses. Zehra doesn’t publish her work as much as she used to, but she continues to write as a form of self expression and stress relief. Sharing her story so that others may know they are not alone is one way she has chosen to give back.

“ALS Canada was on my side from day one, and for that I am truly grateful. They have provided me with essential equipment such asZehra sitting in her wheelchair, using eye gaze technology a hospital bed, commode, wheelchair, and lift, but more importantly, my Regional Manager provides support. She has been very instrumental in advocating on my behalf to various agencies. I wish every ALS patient in the world had access to a supportive organization like ALS Canada.”

ALS takes so much, but every gift made to ALS Canada this holiday season will help people like Zehra and Sinan enjoy precious moments. With the generosity of donors, we can continue to support those living with the disease in Ontario and fund more promising discoveries for a future without ALS.

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