I moved to China in 2008 to be closer to my mother.
Judy had been diagnosed with a rare neurological disease called olivopontocerebellar atrophy (OPCA) which gnawed at her motor functions over the course of several years. What started out as a little bit of fatigue walking around Countryside Mall in Clearwater, FL, slowly turned into an inability to walk, stand or move on her own. It was an incurable, inevitable fate. Her body began to give up.
But her mind did not. During those years, she was alert and engaged despite everything which got stripped away. She always smiled her angelic smile, as if it were the last of her this insidious disease was going to take. It was the last thing I saw when I left her, right before she left me.
My parents moved back to the Philippines in 2008 to find a better way to take care of her. The US health care system was just too expensive to tackle something like this, and Social Security wasn't enough to sustain living in a big empty house they didn't need anymore. I arrived to China a couple days later to work for Microsoft in Shanghai. Every few months or so, I'd fly back to Cebu to visit and help my father take care of my mom. It was like seeing intermittent snapshots of her condition; each time I visited she was dramatically, visibly worsening. But she always smiled and welcomed me home, even though we both knew it wasn't really home for either of us.
At this point, I'd been messing around with making music, trying to figure out ways to express myself. Words and pictures weren't enough. I'd started using GarageBand to compose little instrumental things for myself, and while they weren't especially great, they were mine. Mom and Dad had always been involved in music (We're Filipino. So, yeah, we're musical). They used to sing with the Philippine choral group in Palm Harbor, and both of them had solos whenever they did big productions for the holidays or for church. People loved their voices. My father had a mighty baritone charged with a noble lilt when he climbed octaves. Mom's was more angelic and dear but no less powerful; her vibrato could rival opera singers and her tone silenced rooms. Together they were the stars of the choir.
In her later years, mom couldn't sing anymore, but she still loved music. And when I came home for Christmas one year, I wanted to show her that I'd been making my own music, too. You could actually make songs on airplanes and it was so easy now (that didn't mean it was any good, it was just easy).
I layed in bed next to her and showed her my fancy new iPad, pulled up a keyboard and let her take it for a spin. I held the iPad up above the two of us, close to our faces so she could reach up and play with the piano. Her eyes widened and I realized this was the first time she'd really interacted with anything like this; she could touch a piece glass and things would happen.
I pressed 'record' and we made something together. She rolled her fingers as best she could across the tiny digital piano and tried to steady her fingers to make sounds which made sense. Her hands were starting to be uncooperative at this point, and they tired quickly. After a couple of minutes she lowered her hands and looked at me, smiling. I took this photo:
On the plane home to Shanghai, I listened to what we'd made and I composed something. I imagined how frustrated and how helpless she was starting to feel, how angry she was at her body and at whatever made this happen. Maybe I was projecting. I was the one who was angry. I was frustrated with science and faith and all the things we're supposed to trust. And for a woman like my mother, who dedicated most of her life to science and faith as a nurse and as a former sister of the Catholic church, this was an unacceptable, unfair fate.
My mother came to terms with her fate and her faith. For her, there was no reason or need to blame or to rage at anything; nothing was going to change. She made her peace with dying. And like her smile, like the sound of this piece we made together, the tumult and helpless anger that could have lingered is survived by memories of simple beauty.
I'm still learning so much from her.