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ALS and the Art of Communication

I love to talk. Ever since my mouth first learned to form words I’ve been spewing them at an alarming rate. As a child, my parents lovingly called me “donkey,” after the character in Shrek, who never shuts up. However, as I grew, and developed my voice, my beloved grandmother was slowly losing hers.


Three years before I was born, my maternal grandmother was diagnosed with Amyotrophic Lateral Sclerosis, more commonly known as ALS or Lou Gehrig's Disease. As I was growing up, my grandmother’s muscles were failing her. Despite this, I never quite realized how different from the norm our situation really was. For my whole life, my grandmother’s disease was just a part of our lives. I spent much of my childhood riding around in my grandmother’s walker while she doted on me from the comforts of the couch.


I adored the time I spent at Grandy’s. In her twelfth floor Toronto apartment, I felt as though I could see the whole world. I spent days overlooking the city while playing with the new toys that magically appeared during each visit. My relationship with Grandy was close, I was her first grandchild, and we shared many passions that neither of her own daughters were particularly interested in.


When I was six, the muscles in Grandy’s vocal chords became weaker. Her words were now slurred, giving her the permanent sound of being slightly drunk. The six year old version of me had trouble understanding this change. Suddenly our conversations moved more slowly. I had to pay really close attention to each word my grandmother formed, and even then I couldn’t always understand what she was saying. I watched as her lips moved, and tried to guess the meanings of her sentences from the words I could pick up.


Nevertheless, our conversations continued to be vibrant. I loved to talk, and Grandy loved to listen, and in these early formative years, I was able to adapt to this new style of conversation. At the age of eight, my Grandy told me, “You are the best at understanding me.” My tiny heart swelled with pride, and for just a moment, I stopped talking.


I only saw Grandy on average two or three times a year. I lived eight hours away, and due to the wheelchair that became her trusty companion, she was unable to fly. When I got my first email account at age 10 we would email constantly, our conversations now coming to life through the computer. We communicated so often that I barely noticed that Grandy’s vocal chords were moving slower. The words were more slurred. I had to ask her to repeat herself more times than I would’ve liked.


When I turned eleven, the once coherent emails became riddled with typos. The ideas that once flowed smoothly were interrupted by random letters. Grandy typed using only her pointer finger. She would lift her hand above the key, and bring it down with enough strength to press the desired letter. As the muscles in her hand began to deteriorate, her accuracy declined. Again, I learned to adapt. It became a bit of a daily puzzle for me as I worked to understand the emails.


A year later, I went to Toronto to visit Grandy. By this point, she had been moved from her apartment into a nursing home. All of Grandy’s things had been moved to a small room which she shared with another lady. I knew things were going to be different as soon as the distinctive nursing home smell hit my nose. The nursing home was filled with the elderly who seemed to be on their last legs. They drooled, they got lost, they yelled. This wasn’t the place for my Grandy. She was still so full of life.  


I walked into Grandy’s new room and immediately began talking. Without taking a second to breathe, I attempted to fill in the gaps since the time we had last seen each other. Grandy feebly nodded along as I rambled through months of stories. When I finally became winded, I stopped and looked at Grandy, waiting for her response. She opened her mouth to speak, and instead let out an incomprehensible grunt. Her vocal chords had finally failed her.


Tears welled in both of our eyes. We both believed this was the end of something we both cherished. I soon made an excuse to use the washroom. In the handicapped bathroom of a nursing home I wept for what I felt I had lost.


Despite this setback, we once again relearned the art of communication. Through my Grandy’s eyes, I could hear her responses. A gleam in the eye could convey a laugh, and the eyes widening told me she was intrigued. I continued to talk but now, I could no longer hear her. For the first time, I had to learn to listen.


If you would like to donate to ALS research, click here.

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