rebelle wellness

Here I Am, in the Airless Room.

 

Her need traps me in a tiny room with no windows, no door, no air. There is no one to come save me and I feel desperate, unlike myself and not the daughter I want to be.

No place can protect me from the airless room. Not when I’m on vacation, eating donuts and coffee out on the porch, admiring the sun rising over the expansive ocean. Not when I’m teaching my students, intent on sharing with them the shapes and symbols to create a family tree.

Even here, secluded away in this picturesque setting with mountains and lake, where I’ve just practiced poetry and taken mindful breaths in Child’s Pose, I’m at risk.

Mere minutes after that zen-induced state, I hear her voice through the phone and I’m snared, caught in the tiny room. “Where are you?” she demands. “I can’t keep track of whether you’re working or with the kids. You and your sister, always traveling around.” I hadn’t told her I was going to a writing retreat, dropping all responsibility, including the responsibility of her, to come here to do this thing for me.

I want to protect this part of myself from her. Or not from her exactly, but from the dementia that seems sometimes so big it is the air I breathe, the food I eat. I’m afraid if I let her see my creativity, the dementia will gobble it up, swallow it whole.

Before this disease stole my mother away, we shared everything. She was my confidante and best friend. When I first became a mother, a year before her diagnosis, I called her from my car every day during my hour-long commute, hysterical. I was distraught that I could not figure out how to be the mom my infant daughter needed. As time stretched on, anxiety crept in, telling me I would never get to that place.

My mom stood by me steadfastly, never wavering in her support, always believing that I had the ability to figure it out. This was the person she had been throughout my entire 30 years on this earth. I wonder now why I can’t access that kind of patience within me, now that the tables have been turned.

Here I am, guiding her foot into her left pant leg, having carefully chosen the pants with no button or zipper, and praying she holds steady on one foot as I crouch on the floor beneath her.

Here I am, hopping up from the table at the restaurant to wipe the glob of salted caramel ice cream from her lap after her spoon missed her mouth. All the while trying to be discreet so as not to draw attention to her disease, and also to act as quickly as possible in the hopes that she doesn’t notice me dabbing her lap because that would mean she would have to acknowledge that help is needed.

Here I am, buckling her seat belt as I drive her to yet another doctor’s appointment, steadying myself to retell the story of eight years of the slow loss of a person. The person who was my person.

Here I am, trying to get out the door of the apartment that we moved her into last year, 400 miles away from the place that she called home, and feeling the well of guilt and anger as she cries because I am leaving, because her world has become so small that she no longer has the cognition to comprehend what it is to have two kids waiting at home, the grocery shopping to do, the lunches to pack.

Here I am, sent to the small, suffocating room by this seemingly innocent question. I could gloss over it by evading and responding to her questions with a question. These days I withhold details and logistics from her, because they cause confusion and aren’t essential. This question gets me though. Isn’t “Where are you?” a timeless question mothers ask of their children?

Doesn’t she have a right to know simply because she is my mother? To evade would be to lie. To the woman who gave me endless amounts of time, energy and love from a well that never dried up, that feels like a deep betrayal. Despite the complete reversal of roles that has transpired over the last few years, I do what’s asked of me and, finally, I tell her where I am.

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Trained as a genetic counselor, Rachel Nusbaum strives to find places in the world and on the page where science, writing, and healing meet together in a pretty Venn diagram. Rachel likes to listen more than she likes to talk. She wears her heart on her sleeve. Rachel is the founder of Orchid Story, where she writes and holds space for women to process their stories of struggle.

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