This Article is From Aug 28, 2014

My Mother had ALS. This is Our Story

It took us years to reclaim the memories of our mother walking and talking. To recall the shifts in her voice when she sang, its rhythm when she taught students in college, its softness when she told us tales of her childhood, its immense depth when she showered us with love.  Over the past ten days, the Ice-Bucket challenge has immersed us head first into colder memories. Our mother was diagnosed with Amyotrophic Lateral Sclerosis (ALS) on August 28, 1998, and stoically endured its harsh sentence for nine years. 3195 days, where each day was worse than the previous.

As her speech deteriorated, she took to writing on the computer to communicate, and to record her early passage to immobility. We found some crude speech software that we hoped could be programmed with frequently-used phrases so she could converse with the many who visited her in the early days post her diagnosis. We were amused that she had to select an American twang as her voice.  

As she lost movement and speech, people would assume she'd lost her memory and her mind too. They'd talk louder and slower with her, as though she'd lost her hearing. Given that most had never heard of the illness, and knowing they all meant well, we'd give visitors a primer by the entrance: ALS is a rare disease that is taking away her voluntary movement, but her mind is sharp. She knows who you are, likely remembers your birthdays and anniversaries and those of your children too. Yet, they'd hold her hand and ask: OLLAKHLE KA? (Do you recognize me?)

Soon we had to turn to an alphabet board that her weak fingers would skim over to rest at letters that we'd string into words, then sentences. A sentence could take 10 minutes. 10 emotional minutes as we mis-predicted her intent and went off on tangents. 

Even more challenging when she switched languages and wanted to converse in Marathi! We wanted life lessons as we achingly deciphered her words. Often, all she wanted was for the cushion to be adjusted where it was painfully creasing her neck. When her fingers couldn't move any more, her eyelids spoke. One blink for "yes". Two for "no". 

"A through M?" Blink (yes). "A, B, C, D...", we slowly chanted. She'd blink on the letter she wanted. "G?"  Blink. "A through M?" Two blinks. "N through Z?" Blink. "N, O, P...." Many times she spelt out: Pray for.... and we knew the rest of the sentence.  Not too many wanted to be part of that conversation. 

Are i-pads making communication any simpler for today's patients and their families, I wonder? In the early days of diagnosis, we thought that if only she could be with us for five years, a cure would be found. Yet, more than 15 years on, as is the case with other neurological illnesses, we're still a long way from tangible advances in treatment, and even further from a cure. 

To all those taking the Ice-Bucket Challenge, thank you for taking a few moments to show support for a silenced group.  My father, sister, the many who loved my mother, and I, would have stood in an icy lake all night long were we able to salvage her fierce independence for even a few days. 

This is an illness that strips one of all movement; the body a trap that the mind cannot escape.  There is no easy way to lose one's mother; she leaves a hole in the universe that we walk around each day.  In the years since she has left us, the frenetic pace of life has taken over, and time has brought us some distance from those deeply difficult days of her long illness.  And now, through musings brought on by a social media campaign, I return to the centre of grief. 

As I crawl my way back to its edges, I recall how my mother loved language - she chose words with care, enjoyed a beautiful turn of phrase, taught many to use it appropriately, and even hand-wrote her PhD thesis in her perfect handwriting... all 700+ pages of it.   Yet, consider this: by the end of this piece, I will have likely shared more thoughts than she was able to in the last year of her life.

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