Photograph by guest arts editor, Colin Grubel.
Read about the art selection process for this piece here.
Watch this piece performed live by the author.
It always hits me out of the blue. Like tonight. I leave an inspiring meeting with friends for the dance studio where I teach ballet and I’m confronted with the moment I dread most in my life: what’s next? I keep myself furiously busy to avoid these moments but suddenly I think of my mom and tears come as I cross the street. I enter the subway just after the train has left and the platform is empty, and a rare moment happens in New York—no one can see me and no one can hear me. In this oasis of solitude my hand comes to my mouth and I sob deep aching sobs into my palm. I fish out a tissue from my pocket and wipe the tears from my face as the platform fills with people.
I suspect my mother has a urinary tract infection again. She lives in California but I talk to her every day and I know the nuances of her voice so well that for days I could hear it in the increasing thickness of her speech. Her mind gets more confused than normal when she has these infections. She has been growing more and more tired every day this week—another sign she has one—until she couldn’t even get out of bed. They tell me the doctor isn’t coming until Monday, so she has all weekend to get worse and I have all weekend to worry. It’s frustrating being her advocate and being so far away. It infuriates me how long it takes them to give her antibiotics.
I can’t explain my sadness to friends, how challenging it is to watch her deteriorate, how helpless I feel though I try to visit her as often as I can. When I return, friends ask how she is. “She’s fine,” I say. I’m not lying. She’s not in pain, she’s not in the hospital, she likes to sing, and she’s pretty happy—and yet she has the mind of a child, can barely walk. She’s losing her memory, her language, her abilities, and it makes me crushingly sad.
As a distraction I go dancing with friends at a Halloween party in Brooklyn. I dress as Spider Woman, in a long black dress and a web painted around my right eye. When I get off the train I follow a goat out of the turnstiles. Up the stairs ahead of her is a bear and then a giraffe—a Manhattan menagerie ascending into Brooklyn.
My friend at the party who loaned me the dress compliments my makeup and use of white shading in the web. It’s warm for October but because the dress is thin and backless, and I fear getting cold, I wear layers of tights underneath. I went to the bathroom before getting dressed, but as soon as I put it all on, I had to pee again. I spend much of my time at the party standing in line for the loo.
We dance into the early morning, not a help to my immune system. Leaving Brooklyn at four a.m. feels like a collective party across the borough. “Goodnight, get home safe,” people call to strangers on the street. We are all in it together as we trudge to the subway and the trains crowd with sleepy pirates and drunken brides.
I get home from the party at five a.m. and wake up at eight for an all-day seminar for fitness teachers. Saying that I keep myself busy is an understatement. It is my private hell, but it’s how I cope. Last month I acted in a play and a film, directed another play, and choreographed a music video. I also work full time, teach ballet twice a week and visit my mom in California one weekend a month. Sleep is a condiment, sparsely sprinkled in between.
By Sunday morning I realize that like my mom, I need antibiotics too. I have all the telltale signs of a UTI—the cloudy pee, the constant need to go, the familiar burning. It explains my need to go so often at the party the night before. The weird thing is, this is the second time in two months we’ve had urinary tract infections at the exact same time. How is this possible? We live on opposite coasts, and although I call her once a day, we have little contact. Even on my visits, since she wears diapers, we don’t pee in the same place. Does the stress of knowing she has one lower my immune system? Or is it because of the frequency with which I discuss my mother’s urethra with her doctor and caretaker and hospice nurse? It occurs to me it could be in my head, but the burning feels extremely real. I even feel feverish and achy, and sure enough, my temperature is 98.4, not a true fever according to the medical establishment, but higher than my norm of 97.2, the exact same low temperature as my mother’s. We must just have a very unusual connection.
The resemblance between us is also very strong. When I wheel her around the assisted living facility, everybody remarks, “You have the same eyes!” “Is this your mother?” “Are you Dorothy’s daughter?” “Well, you two must be related!” We are forty years apart but our wide-set, green-blue eyes blink and smile, and mirror each other as if from the same face.
“What’s your name today?” my mother said one day while I pushed her in her wheelchair on a long walk. Maybe she forgot who was behind her.
“My name is Sarah, what’s your name today?” I said, playing along.
She paused. “D-O-R-O-T-H-Y,” she blurted out as if for a spelling bee.
“That’s great, Mom,” I said, coming to the side of her wheelchair.
She turned to look at me and seemed surprised. “You’re Dorothy!” she said.
“No, but I look just like her, don’t I, Mom?” She smiled and turned away and for a moment I felt a chill, even in the sunshine.
On a lunch break during the seminar, I call my mom. The caretaker answers, a sweet woman who takes care of my mom one-on-one during the day. Because of her presence, my mother stays clean and feels safe, not wandering the halls screaming to go home or crying for absent family members like some of the other residents in her facility. When I tell the caretaker about my latest play she answers, “We’re so proud of you.” Sometimes it’s as if she’s understudying the role of my mother.
“Hi Mom, it’s a beautiful day here in New York.” I always try to be positive.
“Oh . . . you can tell them, huh?” Her voice is slow and her tongue is thick.
I don’t let on that her garbled answer concerns me. “That’s right, Mom, I’ll let them know. You’re doing great, Mom. I’m so proud of you.” I add excitedly, “I’m coming to visit you soon!”
Usually she perks up then and says, “Oh Good! When?” Sometimes on very good days we have a conversation so rehearsed it is like lines from a script, where I tell her over and over when I’m coming until I finally say, “It’s okay if you forget; I will come anyway,” and she laughs and says, “Okay, but when will that be?” And then I tease her back, and say, “I’ll call you tomorrow and tell you,” and then we both laugh. But today she has no energy for my chatter, so I end my one-sided conversation the way I always do, and tell her I love her. She says she loves me too—words we never uttered to each other before all this happened.
She’ll get better for a while and then she’ll get worse, and each time I think she can’t possibly decline any further, but then she does. As hard as it is for me to watch her go through this, how much harder is it to be her? Her dignity is threatened on every front. Strangers change her diapers, feed her, dress her, comb her hair the wrong way. My beautiful, tall, gracious mother, reduced and bent. Her knees and hips and back won’t straighten anymore when she tries to stand. I remember a conversation we had when I was a little kid, so impressed with her height. She was 5’10” and model thin. She said, “When I’m old I will be shriveled because that’s what happens when we age.”
“Someday,” I remember her saying. “You will be taller than I am.” At 5’6”, I never imagined that would actually happen. Now I tower over her.
Lately language has become challenging. She’ll want to tell me something and she’ll start strong, but then loses the thought and can’t find the right words. Other times she struggles to say it anyway even though the words are completely wrong. “Hamburger . . .” She giggles. “That’s not what I meant.” Or she gets mad at herself—“Ugh, I’m so stupid.” Once I tried to reassure her: “Mom, it’s okay. This forgetting thing, it isn’t your fault, it’s a disease.” She cracked up as if I’d said liking pie was a disease. “A disease! Bwahaha!” Another time when I told her that her memory loss wasn’t her fault she listened intently and thanked me again and again. I said it many times after that. She seemed so relieved, it must have been so much harder than she ever let on.
Despite my lack of sleep, I make it through the workshop and wind up with the rest of the participants at a bar afterwards for chatting and networking. Suddenly my middle sister calls. She wants to talk about the arrangements we’ll make when Mom dies. She may be declining, but my mother is still very much alive. I tell my sister where I am and what I’m doing, but she continues anyway. Do we want a viewing of the body? Do we want to keep her ashes when she is cremated? She and my other sister only want a family ceremony and if I want to invite my mother’s friends I can have my own separate ceremony for them but my sisters won’t be involved. It all feels like a kick in the stomach.
I move to an empty area at the back of the bar. Will I make a list of all the people we should notify when Mom dies? “Sure,” I answer. When? I wonder. And how can I go back to the people I spent my day with and continue networking as if this conversation didn’t happen? How can I talk with people about how to motivate students when I feel like a very small child and the loss of my mother has been shoved in my face? While I’m grateful she is thinking about these things, I’m not ready for this conversation. I want a shot of whiskey or to curl into a ball or both. I pace on the phone like a caged animal, wanting to be done with this call, wanting to escape this predicament. I want her to be well. I don’t want her to die, but I don’t want her to linger for years either, dying very slowly. I consider my tangled web of feelings about my mother’s death. Spider woman indeed.
I end the call with my sister, and go to the bathroom again, vowing to go to the doctor for my UTI in the morning, and to call my mother’s doctor about hers. I wash my face, then join the group, my hands still shaking. Someone calls my name. “Are you okay?” I nod, wiping away fresh tears. “I’m fine.” There’s that word again. Fine. It’s like saying “beige.” Am I molten purple? Ashen red? Storm cloud black tinged with emerald sadness?
I will myself not to cry, and finish the evening telling the others about the donation-based studio where I teach ballet. I share with them stories of students with no experience who blossom into dancers, and experienced dancers who’d quit because of injuries, and return to ballet because of my class. Despite my fragile interior, I even make them laugh. In that moment, their shining eyes reflect back to me something I’d forgotten I possessed. By the time I leave, the wave of emotion that threatened to crash over me has calmed. I’m relieved to walk out into the night air and unknot my thoughts alone.
I walk to the train, exhausted, remembering a friend telling me not to grieve my mother’s death prematurely. On one hand it’s hard not to; I grieve who she was. On another hand, she might have months or years left. My next visit is ten days away. Though I wish she could be well again, I will enjoy who she has become as long as I have her.
On the subway platform again, I have no agenda except going home to bed. For once, not being busy is absolutely fine.