On Monday night, I dumped a bucket of ice water over my head as part of the Ice Bucket Challenge — a series of social media dares to raise awareness about ALS and donations to fund research for its cure.
It was cold, wet and somewhat refreshing — but my dripping hair and the crowd of strangers who stopped to watch were the last things on my mind. When I flipped the bucket and the ice hit my head, all I could think about was the first week of December 2009.
In the early morning hours of Dec. 4, my mom died of breast cancer at the age of 51. Just two days before, on Dec. 2, my grandmother — her mother — died of ALS. Two generations of strong women gone in less than a week.
The real sucker punch to the gut — the reason I dumped that bucket of water over my head and the reason I dedicated my decision to both women — is how ALS prevented a mother and daughter from saying goodbye in a real way.
I was sitting next to my mom in the main living room of the hospice care center.
She was in a wheelchair, and my dad stood behind her, rubbing her bald head. Time crawled as we waited for the family to show up.
My mom had suffered a series of seizures the night before.
My dad knew this wasn’t a good sign, so he called my mom’s sister, told her what had happened, and she and the rest of the family rented a van to bring my grandmother to see my mom. My grandmother had been fighting her own battle with ALS in an almost parallel time line to my mom’s journey.
Known as amyotrophic lateral sclerosis and often referred to as Lou Gehrig’s disease, the illness had almost immobilized my grandmother — she was wheelchair-bound and unable to fully speak. My family’s time had been consumed with her almost 24-hour care, and it had been months since my grandmother and my mom had seen each other.
The sliding doors in front of us opened, and my grandmother appeared in her wheelchair with the rest of the family behind her. We watched as the two women, mother and daughter, came face to face for the first time in weeks. My mom reached out for her hand.
“Hi ma,” she said, giving an almost high-five to my grandmother.
My grandmother attempted to answer, but only slurred, indiscriminate words came out. She tried for what seemed like minutes to answer before giving up.
(ALS can eventually leave the patient unable to speak, an unfortunate side effect my grandmother had been dealing with for some time.)
My grandmother motioned for her backpack, and one of my aunts pulled out a whiteboard — a tool my grandmother had been using as her only means of communication. A marker was placed in her hand, and she began slowly writing a message. Minutes passed before she handed the board to my mom.
My mom looked at it closely.
“I love you, too,” she said.
My grandmother smiled and motioned for the board again. But my mom began writing her own message. My mom hadn’t walked — let alone written anything — in weeks. Her writing was slow and meticulous, her letters shaky and slanted. I watched as she penned a message to my grandmother.
By now members of the family were talking and catching up, letting the two women have their time. I was watching the interaction closely. I was 21 at the time and still in shock that this was happening to me and my mom — the strong non-smoker who ate healthy and hadn’t had a sip of alcohol since her early 20s.
She slowly handed the whiteboard back to my grandmother.
In transit, I saw the message: “I’ll see you in heaven.”
My grandmother, with tears in her eyes, nodded. In less than three weeks, both women were gone.
In each of their final months, their separate diseases prevented contact. For my grandmother, ALS kept her from not only caring for and seeing her sick daughter — an instinct ingrained in any parent — but also from physically being able to say goodbye with a hug or kiss. My grandmother, wheelchair-bound, couldn’t even touch her daughter.
My mom, on the other hand, could move, somewhat, and talk, but she couldn’t assist her sisters and brothers at all in caring for her mother. And the rest of the family had to watch as my grandmother wasted away into a pale version of the vibrant and spunky woman she once was — knowing all they could do was make her comfortable.
Five years later, I think about that meeting between two generations fairly frequently.
Ice water doesn’t cure ALS — but if it can raise awareness about the disease and fund research to find a cure, maybe more mothers and daughters can have time together when they need it the most.