“Will you come sit for a spell? I’ve been missing you.”
As I read the text from my grandmother, the guilt was immediate. For the first time in my life, I couldn’t remember the last time I’d spoken with her. What’s more, it had been months since I’d been back to my hometown at all. The allure of a semi-new life, completely separate from anything I’d previously known, had taken hold of me. The FUTURE in big, bold letters made me look only toward the horizon, and soon the people from my past had become blurry and out of focus. I could barely hear their voices through the fog.
When my brother and I were growing up, we had what we called ‘Grammie Joyce Day’. It was a standing weekly date where she would pick us up from school and take us to the music lessons she paid for out of her own pocket. She’d sit quietly in the hallway while we played, working away at a book of sudoku puzzles. I can still remember the sound of her pencil scribbling against the paper; a makeshift metronome. Afterward, she’d hand us both a crisp $10 bill and ask us where we wanted to go.
“Anywhere in the world?” I’d ask. She’d put her finger to her chin, seemingly deep in thought, before suggesting somewhere a bit closer to home. The toy store. The candy shop. The book place on the corner. We would choose the option that most appealed to us that week and use our money to purchase the silly, albeit useless kind of things only 8-year-olds buy, and for the bulk of my formative years Wednesday afternoons were filled with animated car rides, a love for music, and the feeling that those moments would never end.
I sat on my couch and read the text she’d sent again. It hurt doubly because I knew texting wasn’t her preferred path of communication. If you can’t be sitting in front of her, she’s the kind of person who wants to at least hear your voice; every lilt and pause and hiccup. Not to mention texting has gotten harder and harder as her Parkinson’s has progressed. Even so, she did it for me anyway, typing each letter as quickly as her shaky hands would allow. Because it didn’t matter how far she had to reach as long as it would get to me.
A few Christmases ago, a gift was placed in my lap. It was haphazardly wrapped, packing tape askew and corners wrinkled, and although it likely took her hours, Grammie had wrapped it for me special. I made eye contact with my mother, who offered a small nod as an emotional warning, and the room became quiet. I tore the paper carefully and opened the box to reveal something that took me completely off guard.
It was a beautiful crystal bowl that had been in our family for generations. The only piece of china I ever really had a connection with; the delicate design balanced with a decided sturdiness. Just looking at it reminded me of my grandmother. Made me think of the times when I was little and had helped her make the rice pudding that the bowl was traditionally used for.
To me, it symbolized my childhood: a bright, warm thing that was always surrounded with deep conversation and uproarious laughter. If my grandmother was giving it to me, I realized, it meant something that I wasn’t ready to think about yet. It was as I looked up at her, the tears in her eyes mirroring my own, that I knew she was thinking the same thing. Time seemed to slow.
Because someday I won’t be here.
I drove home that night, carefully placing the bowl away for safekeeping, and for a brief moment I related to its delicate strength. I saw not only my grandmother in it, but myself, too. I saw a life that was all the more meaningful for being finite. A life where I picked up the phone every week to call her. A life where I contributed to the solution instead of becoming part of the problem.
It was three months later that I found PMD Alliance.
I applied for a job with the organization thinking of my Grammie—of the silent struggle she deals with every day. I thought of my mom, who cares for four people over the age of 80, while also working a full-time job and dealing with her own health issues. I thought of myself—of this oh-so-glorious future of mine—and how it was possible to tweak my original vision of it. Not by rewriting it entirely, but by widening the path to include the people who matter. The people I never want to forget.
If you were to ask my Grammie what she wants most as she walks her path with Parkinson’s, it wouldn’t be a cure. It wouldn’t be a magic pill, or a sought-after physician, or even a special surgery.
If you asked her what she wants the most, it would be for someone to sit with her. For someone to hear her, and see her, and commiserate with her on the days when the fight feels like too much to bear.
It’s as I go to work every day with PMD Alliance that I know—no matter how far apart the two of us may be—that I’m doing just that.