My grandma was fun.
Now, yes, I might be a little biased. After all, she was my grandma. And sure, everyone thinks their grandmas are pretty great. But Ann Mangel? She was more fun in her sixties than I am in my twenties. She had an unstoppable energy matched by none – in or outside her family.
My grandma was sharp, joyful, and full of life in a way that I’ve never seen in another person. And that’s why it was so hard for us to watch her die.
During my junior year of high school, my grandma was diagnosed with Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig’s Disease. It’s a devastating neurological disorder that destroys the body’s voluntary muscles. You’re left first motionless, then speechless, as your body succumbs to a disease with no cure. The only possible end is death. After months, or years, death comes — usually from starvation, choking, illness, or accident.
In about 10 percent of cases, the mind deteriorates along with the body. That was the case for my grandma, who slipped away over the course of a few months, fading in mind and body before dying that summer. In what seemed like the blink of an eye to my teenage self, my joyful, beautiful grandma disappeared as her body attacked itself.
ALS is an ugly disease. Families who experience ALS spend their time feeding their loved ones thickened fluids and easy-to-swallow foods, carrying and cleaning them, and running drops of water from a sponge onto their lips when the thirst – and dryness – becomes too much to bear.
Especially in the case of people who suffer from ALS plus dementia, where there may be little fight left in a body, it’s easy to see ALS as a disease that robs the body — and the person — of all dignity. It’s not a graceful sight.
As a 16-year-old, it was easy to shy away from such moments with my grandma. In some ways, I felt like she’d left us long before she died — her personality, her fighting spirit, that loud voice that I’d give everything to hear once more were gone. Her body was with us, but I couldn’t find her.
But even in the depth of the worst moments of ALS, my grandma and my family revealed to me a kind of beauty that only emerges through grave suffering and human pain. I witnessed the most glorious moments of grace that elevated and transformed my grandma’s disease through the gift of love.
Without saying a thing, my grandpa taught me what it means to love. Throughout my grandma’s disease, my grandpa acted as her caretaker. He didn’t spend a single day away from her from the day she was diagnosed until the day she died. When all she would eat was chicken wings and Cheetos, he stocked the kitchen. When he had to learn everything about a disease that’s still elusive to many doctors, he created a system and a network for himself — and he found experts states away, driving to them as often as he needed.
My grandpa showed a reverence and respect for the woman he’d loved since she was 18, and he showed it no less in her last days —when she couldn’t speak or eat — than he had on their first. Their love grew in a way that redefined my understanding of intimacy; suddenly, the simplest moments of tucking away a stray hair or tucking his wife into bed seemed the most extraordinary acts of love.
My mom and my sister showed the same care for my grandma as she once had for herself. Even when my grandma could no longer recognize us, or no longer seemed to understand what was happening around her, they kept her hair done and her nails painted. After years of keeping her appearance pristine, this simple act of cosmetic care revealed a profound respect for the dignity of my grandma in her continuing days of life.
The last time I saw my grandma, about a week before she died, I was tempted to shy away from all of this — to shrink in fear, to close myself off from the vulnerability of my grandma’s weathered body, to choose to see only the disease. But my mom invited me into my grandma’s room, where she sat connected to a breathing machine and had to be reminded to inhale. I sat in the bed, held my grandma’s hand, and told her a story about something I was doing at the time.
I have no memory of what I said, or what the story was. Try as I might, I cannot recall a single tangible detail of that conversation. What I do remember was my grandma, in pain and weak as she was, laying in the peace of rest. That moment is how I choose to remember my grandma’s experience with the disease — it was a moment of clarity when I could see past the wires, past the months of confusion and pain, and encounter her.
There were a few moments like this throughout my grandma’s disease — when I saw her again. Once, she told me the story of a trip to Ireland — her favorite place in the world — and I glimpsed who she might have been when she took that trip. It was those moments that helped me to understand the fullness of my grandma’s humanity even in the midst of ALS. And it was those moments that revealed to me the grace and the beauty of my family’s raw expressions of love that gave dignity and meaning to a time of immense suffering.
ALS is ugly — it’s a horrific, tragic disease. I’ve since become a volunteer with the ALS Association in the hopes of someday creating a world without it. But I will never for a second believe that my grandma’s dignity, her grace, and her beauty were taken away by it.
Her wounds opened within us a new capacity for healing, a new way to see the world that witnessed to the immense awe that comes when one human being in pain meets another. In the midst of the disease that took my grandma away from us, I was introduced fully and completely to unconditional love. I saw grace in its purest, rawest form — and let me tell you, it was beautiful.
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