Where to begin?

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In group meetings, everyone is asked to greet the room with their name and date of diagnosis. It feels diminishing to identify someone by their illness, though it does become difficult to dissect the person from the condition as the symptoms spread and irreversibly alter the individual’s relationship with their own body. During these monthly meetings I take comfort in thinking about my mother as I know her – not merely as someone who was diagnosed with ALS on April 26, 2016, but as an inspirational woman, a compassionate mother, a caring friend.

 

Christine Gryko was born in 1955 in Buffalo, New York. The daughter of two Polish immigrants, she grew up speaking both Polish and English with equal comfort. Like many people who came of age in the late 60s and early 70s, my mom wore her straight, blonde hair long – in some photos it extends all the way down past her waist! She wasn’t part of the psychedelic crowd of her time, though – instead, she focused on her studies and worked at a butcher stand at the Broadway Market while earning a bachelor’s degree. After graduation, my mom started working at Buffalo Medical Group, a medical facility where she’d interned during her studies. She started out working as a medical technologist, spending most of her career at BMG. In the late 90s she accepted a job at Buffalo General Hospital, but she ultimately found her most fulfilling professional role as Quality Assurance Supervisor at Roswell Park Cancer Institute. My mother took my grandmother to Roswell Park for chemo and other treatments before cancer took her. For my mom, working at the place that had at least tried to save her mother seemed to offer a great sense of purpose, a continued closeness with my grandmother, and an ability to help other people – perhaps even to ensure that someone else’s mother gets the lifesaving care that she needs. My mom worked at Roswell Park until her illness robbed her of her ability to speak and use her hands, making it impossible to continue to work.

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My parents were married for about two to three years, though they were divorced when I was around six months old. I was their only child. My mother never dated anyone after my father, other than having coffee with a man from church a few times about two years ago. When I was growing up, I used to ask her why she never dated anyone else. She said she was worried that if she ever had another partner, there was a chance they might not treat me well. She gave up on love to be there for me and ensure a better future for me. I encouraged her to try dating again on many occasions, but she never did. Because of her incredible maternal dedication and the sense that we were together through joy and sadness alike, we developed a close relationship as both mother/son and as best friends.

During college I developed a love of hiking and spending time outdoors. When I told my mom about it, she said that she wanted to try it out and come with me. What developed from that initial curiosity was a series of immensely enjoyable day hikes and even a few backpacking trips. We’ve hiked together in New York, Illinois, Arizona, Utah, Colorado, Wyoming, Montana, Washington, and California (more on this in a future post).

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My mom first noticed the onset of her symptoms in April 2015. Neither of us remember the exact date, but she saw her doctor about it on April 29th, so it was probably within one to two weeks prior to that appointment. It started out with a slight but persistent slurring of her speech and a subtle loss of strength in her right hand. Her doctor dismissed the hand weakness as either the onset of arthritis or a pinched nerve. He recommended that my mother see a speech pathologist/therapist to determine why she was slurring her words. It was the speech therapist who finally told my mother after several months, “I’m not a doctor, but I think you should get tested for ALS.”

I dismissed the suggestion outright when my mom told me about it. “No one in our family has ALS,” I said. “The other common cause is environmental exposure, but you’ve worked in a medical lab your whole life, not in a factory or anything like that.”

I remember being angry that the speech therapist had even put the idea in my mom’s head. She wasn’t a doctor and had no right to make speculations like that. What if she’d said that to someone who was severely depressed, I thought. Getting news like that could push someone over the edge, and this person wasn’t even qualified to suggest a diagnosis to a patient. Ultimately, that speculation was what would end up eliciting the diagnosis that all of her doctors and specialists had missed.


On April 26, 2016, a neurologist told my mom that she had a neurological disorder that was incurable. I still remember the way I felt when she told me. I had recently gone through a bad breakup and moved into a studio apartment in East Hollywood. I had been celebrating my newfound independence after two years of feeling neglected and mistreated. It was an otherwise optimistic time and I was in my new room standing near the television when I got her text. She’d sent it to both me and her brother. It read, “The doctor said I have ALS. I’m too upset to talk on the phone so I just wanted to tell you both at the same time.” It took me a minute to fully process what I’d just read because it was so thoroughly unexpected that it felt surreal and impossible. As soon as I recognized what was happening, I called my mom. She answered and said nothing, just cried. I instantly started crying too, and neither of us spoke for some time. We just cried, and I pictured the heartbreaking expression my mother always bears when she’s deeply saddened, pictured her perhaps sitting alone in her car in the parking garage outside the doctor’s office or perhaps back at home already after driving with a mixture of disbelief and sorrow, and I wanted more than anything to hug her tight while we wept, to remind her that she’s not alone, but we were 2,546 miles apart and the helplessness that I felt in that moment and would come to feel in the coming weeks and months only added to my anguish.

 

In my next post: coping with grief, reuniting with my mom, and picking up the pieces to start a new life together:
https://thisbittersweetlifeblog.wordpress.com/2017/08/08/where-to-begin-pt-2/

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Author: thisbittersweetlifeblog

I’m a writer, editor, and hiker living in Los Angeles. In 2016, my mother was diagnosed with ALS. In 2017, she moved out to California so we could make the most of our time together. This blog is about making the most.

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