Month: October 2013

There’s something about the smell of the place that clings to my skin. Perhaps it’s a disinfectant or the lotion she rubs on her skin. Possibly a mix of them both. Either way, it has become the scent of her dying and it won’t let me sleep. As soon as I am home, I step into the shower to rinse it off, knowing that I am sluicing her touch from my body as well and uncertain if it should feel like a betrayal.

Her name isn’t one I mention here. We’re unrelated by DNA. Until recently, for almost a decade, I only saw her on Jewish holidays. The entire story is more complicated, a byzantine web of different familial relationships, but the truth remains, and it all boils down to this one simple fact: My mother is dying.

She has severe young onset Parkinson’s and she is not going to improve. She is not going to rally. She is not going to be saved by a miracle, a drug, or by therapy. It is a degenerative disease of the central nervous system that currently does not have a known cause or cure and kills her brain cells in certain types of pathways, destroying her body from the inside. Her symptoms are typical and so is the progress of the disease. The medication they have her on at the care home help, but they are gradually becoming ineffective. Other than her body failing, her symptoms include memory loss, inability to focus or stay present, mild paranoia, depression, and slight dementia. There is no recovery. Nothing about this will get better. It will not “be okay”. Her failure is inevitable.

I try to visit at least once a week. I try to always bring some kind of treat. (Otherwise, the chances are high that she might not eat that day). I bring flowers and movies on a memory stick. I bring printed out pictures of her loved ones that I tape to the wall where she can see them from her bed. I offer her my service in any way I can. I joke that she has won a life-time supply of chocolate, now that the end of her life is close enough that I can finally afford to guarantee such a magnificent promise.

We lie in her bed together and she snuggles up to my body the way I used to press into hers when I was five. Her body has wasted away so much that she barely has any substance at all, so there are no problems fitting both of us in her hospital style bed. She is so fragile, it is hard to believe. I could probably carry her a mile in my arms. Instead I support her shaking limbs and brush shea butter onto her skin with my fingers and try not to count her vertebrae. I love her so, so much.

She has other daughters, but I am special in that I am a bridge, the physical avatar and “child” of her relationship with my godmother, her best friend of over 30 years. My visits ground her as very little does. And I touch her constantly. I can’t not. Even when I sit on the floor at her feet, we twine ankles, we perpetually hold hands.

We discuss everything. About when I was a child, about when she was a child, our loves, our relationships, our disasters, but also activism, feminism, poetry, technology, sociology, history, literature, religion, psychology, education, and nanotech. When she is present, she is clear, intelligent, and sharp. Her life has been endlessly inspiring, one of bravery and protests and marches and academia and marathons and that spark still exists sometimes as light in her eyes. The end of her life, she says, is the one adventure she knows she will get right.

Yet she is one of the only people alive who has known my life. She is one of the very few human beings on the planet that I know actually loves me. And she is about to die. I got the phone-call from the care home today. It is going to be very, very soon.

There are a thousand ways to kneel and kiss the ground. Visiting her is one of them, even as it breaks me. Even as I cry every time I leave. Even as I still don’t know how to say goodbye.