Life as a Disabled, Heartbroken Artist
At what point, do we give in to despair? Several times, the last few years, since becoming disabled, or rather, much worse disabled, I have wondered about my breaking point. And just when life started looking up, having found regular ketamine infusions as a very effective treatment for chronic spinal meningitis, the corona crisis separated me from my favorite person: my beloved mom. An incredible artist herself, she went from careful, realistic watercolors of flowers, puppies and wedding bouquets, to splendid mixed media acrylics, until she veered into abstract landscapes of overwhelming beauty. Despite being married to a difficult man, my father, she kept at it.
Without connections, in a small provincial border town without galleries, she taught, arranged expositions, obtained her Bachelors in Fine Arts at a Belgian university and kept growing as an artist. And human being. Her last visit to the United States was marked by great insights, by regret and love, and much needed apologies flowed to her youngest daughter, bridging two and a half decades of pain. While the corona travel ban kept us apart, even after my father died in March, she listened to my advice (or rather, pushiness) and started writing her youth memories. I send her an amazing book, “The Story We Leave Behind”, a Dutch guide to memoir writing. But really, all I wanted was to get to know her better. When I arrived after her ischemic attack, she was on hospice in her flat. “The Story We Leave Behind” was on her night stand, her reading glasses atop, an old leather book marker half way through.
Pieternel never regained consciousness, but that very first evening, overcome by tears I leaned over and hugged her. Suddenly, I felt her left hand (the one not paralyzed by the huge stroke) and rub my back. She even pressed me against her. It was unbelievable and I wished the moment could have lasted forever. But I didn’t want to be selfish, and quickly said: “Tinka, come on, it’s your turn!”. Her strength quickly diminished after that day. I’m still in her flat, surrounded by the pictures and paintings she cherished. I’m taking notes in the notebook she’d used to start writing down what she remembered, and yet can’t bring myself to read them. The last time we talked, she mentioned how incredible it was, that the more she remembered, the more other details that she thought long forgotten, surfaced.
I have never cried more than I have the last few weeks, packing up my dad’s albums, fifty plus years of memories, the pictures she had from her youth, her own grandparents and great grandparents. This is where I come from. That is the birth of me too. Those lives, all gone and forgotten. My nephews and nieces are sweet, but I cannot see them holding on to those albums, just as I wasn’t keen on learning about my parents’ past until it was too late. On the other hand, we’ve tried milking my folks for decades, giving them blank albums titled: “Mom, tell us what it was like”, or “Grandpa, tell us what it was like”. Both refused to fill them out, until finally, Alzheimer’s loosened my dad’s tongue, and similarly, it wasn’t till this summer, after my dad died that my mom wanted to write down her past. It is the way it goes. I thought my body would die, when my mom passed, and yet, here I am.
Finding a new equilibrium. I wore her blue sporty jacket to the gym, and smelled her. Sweet, familiarly flowery, a little sweat. The smell I have known from the moment I left her uterus.
She’s with me in every breath I take. I know my journey is far from over, but I have sought grief counseling, and was diagnosed with reactive depression. I like to think it helped me, burying myself in albums and handwritten notes. I like to think I am re-inventing myself, as an adult orphan. I like to think it’s not over yet. Today I visited my dad’s nursing home, the room where he died, and where my mom visited every single day of his one and a half year hospitalization. It was a delightful, dignified place, unlike the large American nursing homes with three to a room. There were nine rooms to a floor, each patient having their own room, front door and even a locked mailbox. In fact it was so nice, I wanted to move into that small room and write my books and even a screenplay.
But once again, despite my own ailing health I need to travel back to where I belong, that strange, Southwestern deserts where my soul resides. Maria, one of the care workers said dad often talked about the family he spend summers with, the couple that were a substitute mom and dad at the Dutch coast. I had not realized until today, that they taught him to think: “It is what it is”. His lifelong motto served him well, myself less so. I will scream against my fate, even now. Even more so now, with the spinal cord inflammation temporarily out of control. Today, I got to know my parents better, as I followed traces of their lives. I got to know myself better. I must go on, as a writer with disabilities and an incurable disease. There is still too much to discover. I still have another story to leave behind.