Growing up, my dad’s hands were a source of magic Painting, calligraphy, photography, carpentry—they were endlessly capable of producing beauty. This wonder was summed up for me by the three framed collages he made when I was a baby and hung in my childhood bedroom: bits of paper, painstakingly torn and lovingly formed into vibrant, colorful illustrations of Grimm’s fairy tales. They’ve been lost to time, but I still think of them. Not just as a representation of his extraordinary artistic talent… but as a record of who he was before his Parkinson’s, as a creative mind and as my father.
The first collage was of Hansel and Gretel, the children approaching the witch’s gingerbread house. It was my favorite because it was the most colorful and had all the candy. But it was also the scariest, because it had a witch. As a child, I would focus on the candy for as long as I could, until my eyes inevitably crept to the witch. Then, I would feel distinctly uneasy. She was scary, lurking there, waiting. A malevolent presence just biding her time.
The witch never moved, but we did. My mom and dad divorced when I was 15 and I saw him every other weekend. It wasn’t until much later, then, that the malevolent presence made itself known.
I was in my mid-30s when I got a birthday card that was addressed to me in an unfamiliar handwriting. I turned it over to check the return address. It was my dad’s. Something gnawed at me, a scary witch feeling. The handwriting was awkward, forced-looking; this wasn’t my father’s penmanship, which was always unusually graceful and elegant. Soon after, he told me that he’d been diagnosed with Parkinson’s. The tremors were starting to affect his fine motor coordination. It was a small side effect for most people, but my dad spoke through his hands.
That small change in his handwriting spoke louder about what was haunting him than words ever could. He was always a man of extraordinary artistic ability, whether it was penmanship or cake decorating. But now, this dexterity was being taken from him, locked away.
He was always a man of extraordinary artistic ability, whether it was penmanship or cake decorating. But now, this dexterity was being taken from him, locked away.
The second collage on my wall growing up was of Rapunzel. She was in the tower, isolated and alone—but the distance kept Rapunzel safe from the witch. At first, just like Rapunzel was removed from her witch, I felt removed from my dad’s disease. We were separated by half of the country; so many miles away, I could pretend that it didn’t exist. When we talked on the phone, he sounded the same; if we just didn’t talk about it, it was almost like the illness was a bad dream.
But of course, just like the witch at the base of Rapunzel’s tower, Parkinson’s was still there, lurking. I could see it in the increasingly labored and enlarged lettering on my dad’s envelopes. And, over time, I saw that the Parkinson’s witch had begun her ascent, slowly creeping up the tower of my dad’s mind. I learned he’d had to quit his job and go on disability. He lost his health insurance. What was I supposed to do? How was I supposed to help? With three time zones between us, I felt like I was playing a game of Telephone—badly: half-informed, half aware. I hung up the phone after our conversations and fumed for hours, frustrated that I had so little to offer, angry at the disease and my own inability to help.
The third collage was Rumplestiltskin—the story of the crafty little man who extorted what was most precious, who could only be undone by the guessing of his real name. Names are powerful. After my dad told me he had Parkinson’s, I spent months stewing in impotent fury before I put a name to what I was really feeling: fear.
I was scared of losing my dad—in death, yes, but also in increments, as he was slowly reduced from the man I’d known. I was scared of what his diagnosis meant for me and my own children, who are now 9 and 13. The hereditary nature of the disease means that this could be our future as well and, while remarkable research is being done, there is still no cure. More immediately, I was scared that my father wouldn’t be able to get the assistance he needed and that I wouldn’t be able to do anything to change that.
Names are powerful. After my dad told me he had Parkinson’s, I spent months stewing in impotent fury before I put a name to what I was really feeling: fear.
I can’t change his Parkinson’s or its effects. Like the falling apart decay of the collages, my father has lost many of his artistic abilities: he’s had to give up much of his detailed work, and now he contents himself with painting in large, Mondrian-like blocks of color. But he still treasures art. A year ago, he came to visit; he wanted to go to museums. It was my first time pushing him in a wheelchair. He tired quickly, but before the illness caught up with him, he spent a few hours discussing art with his grandsons. The joy radiated from him, sharing this love with my boys.
The art in his soul is still there. It hasn’t been lost; its expression has just changed. His painting now is different, but it’s still clearly his, like everything from my fairy tale collages to the decorations on my birthday cakes. And in that sympathy for light and feeling, I realize that Parkinson’s has not destroyed him as an artist… nor has it changed who he is as a person.
I miss what my father once could do with his hands; I know he does as well. But I am proud of what he persists in doing still, refusing to be undone by witches and secret names that tell us to be afraid.
Creative Commons photo by Janyn Berame.