The room is a square. Walls colored some shade of clay. There is a bed, two chairs, and a window. Sitting on the side table is a jug of water and some white Styrofoam cups. At the front of the room, under the television that does not work, a narrow counter with magazines and bags piled high.
I’m sitting on one of the chairs, looking across the room and out the window, watching the warm breath of brick buildings smoke up into the winter’s cold sky. My mother is lying on the bed in front of me, head tilted slightly up, slowly dying.
We’ve been here for almost a week. Camped out in this room. In an obliging effort to paint normal the impossible we’ve moved in pieces of her life: a picture frame beside the bed, one of her silly little frog statuettes, the stereo from her kitchen counter playing favorites we don’t know if she can hear. Dionne Warwick, Aretha Franklin, Neil Diamond.
At this point, it has become a sort of vigil, with us looming over and around her, quiet and solemn. Sometimes leaving the room, sometimes allowing a moment for the outside world, but still always connected, always alert, checking and re-checking, never relinquishing our duty.
We take shifts, like cops on a stakeout. Sitting in our chairs we stare at the monitor, keenly aware of every minute change in oxygen level, heart rate, blood pressure. I see a dip in a number and immediately get up to adjust the swimmer-like oxygen tube pinched on her nose. I know that it doesn’t really change anything, but I do it anyway. These gestures, seemingly done with a purpose and knowledge of the finer points of long-term palliative care, are entirely for our own sake.
Futility is a word you come to fully understand.
A young man is sitting with his mother. He’s in his early thirties, scruffy-bearded, Sunday morning hair still a mess from last night. The mother is just past middle-aged, dressed conservatively, hair neatly combed. She moves slowly at the table, in sickness or grief or loneliness, I can’t tell. She’s not wearing a wedding ring. The waiter comes and goes; she puts down the menu without looking at it. They sit in near silence, a somber quiet emanating. The still is physical, has a voice, sits with them at that table. The boy reaches out and puts his hand over hers.
At the beach walking along the boardwalk, a family passes me by. Their group casually drifts off into parts: father hanging back and joking with the younger kids, mother strolling up ahead with the eldest daughter. Almost completely out on her own now, she is back from college, in town for a family vacation. They walk side by side, these two women, arms accidently, affectionately, brushing in stride. I see the resemblance in their profiles, in the way they stand. Finally meeting at an age where they can walk as friends, they move with a familiar ease thought lost. They haven’t seen each other in a while. There is a lot to talk about.
This happens often. Stopping me in the street, staring through café windows, music in my earphones fading, seeing layered behind my reflection once familiar scenes now recognizable only as ones I’ll never be part of again.
Two weeks before the end, I stood waiting for her at the top of the stairs, watching her carefully but casually maneuver her skinny legs and bloated belly up my front porch. She muttered something about it being a pain in the ass to park downtown. I told her step on it, we didn’t have all day.
Her rejection of traditional parenting left us free to develop our own dynamics, and over the years I began to relish the rush of going where we weren’t supposed to...
We were friends. Her rejection of traditional parenting left us free to develop our own dynamics, and over the years I began to relish the rush of going where we weren’t supposed to, of bringing us right to that line. Calling her a cougar when her Saturday night skirts were too short; nicknaming her Firebush when she dyed her hair red. She would feign indignation, give me a phony this-is-how-you-talk-to-your-mother? look, and then drop the unnatural severity to come along and join me in the forbidden, hitting me with a solid “oh, f-off.” There is a place usually reserved for friends, for peers, a state where you are that other part of yourself, the one normally hidden from our elders. I guess I wanted her to know it. My silly way of showing her respect, of bringing us closer.
It was a sunny day in mid-February Montréal, mild for the middle of winter. She walked past me and into my apartment, dropping her bag and slipping off her shoes. We had plans for lunch. But never made it.
When we arrived at the emergency room an hour later, one look at her gaunt face brought us to the front of the line for triage and one look at her blood pressure brought us rushed in through the big swinging doors.
And everything changed.
Our next seven days were spent behind those walls, tiny players living out a real-life public theater. Waiting. Watching. Anxious. Making phone calls from the cramped waiting room, letting the relatives know that they should probably start booking plane tickets. Desperate, for the nurses to look our way, to come by and do something, anything. And the bed, that fucking paper-thin orange-mattressed emergency room bed.
Eventually, word got out to the Oncology department that she was stuck down in Emergency. Doctors came down to see her, checking on her condition and coordinated with the staff. The cancer, now at an advanced stage in her liver, was not the direct cause; it seemed like an infection, perhaps from the five liters of fluid that had been sitting illicitly in her midsection for the last eight months. Any elaborate attempts to pull her out this hole of low blood pressure would just make things worse.
And thus began our slow march towards the inevitable, moving from active treatment to palliative care. I noticed their language changing, words being replaced. From talk of tests and results and what we can do next to considerations of pain relief and quality of life.
My transition from son and brother to spokesperson had been going on for a year, but now I was being moved to new and unnatural places. Caretaker. Arbitrator. Possessor of her fate.
A few days later, a burly Middle Eastern doctor came to see us. My sister came running to get me, frantic. I had not been there for their first encounter and she was horrified by what he was saying. I had to go and find out what was happening.
My transition from son and brother to spokesperson had been going on for a year, but now I was being moved to new and unnatural places.
Face to face with this new doctor, I immediately understood my sister’s panic. He was not beating around any bushes. Not mincing any words. He said she didn’t belong in Emergency and if he was going to be here all night he needed to know how he should handle things if they went bad.
He got even more direct.
Do I resuscitate?
A ridiculous question. I paused again. He plowed on.
In her condition, he said, I don’t think it would be right to get physical with her. At this point, it would do no good.
Physical. Standing there in front of him, I processed it. Pictured scenes from television shows, white-scrubbed staff rushing down the hall when the beeping went flat, nurses trying to revive her, and finally, this thick hairy man jumping on my frail dying mother and beating at her barren chest. I saw big hands, her withered body.
And so I told him that I understood.
Not enough. He waited for more.
Saying out loud, giving my approval, to let my mother die.
Surreal is a word you come to fully understand.
She is tall and pretty and sharp as a knife; but also simple and humble and easy to please. She does not demand your attention. That’s just not her style.
Sitting quietly with one of her friends, you might not think much of her at first, might even overlook her. But that’s fine, she’s more than happy to just sit there and listen to the music.
Later on she dances, hips twisting to an oldie. On the dance floor with an old friend who can keep up with her moves, it’s here where she lets a bit loose, and sticks out, ever so slightly, from the crowd.
You will not see signs of those ugly years. Of the divorce. Of her covering her face. But if you look at her hands, long fingers solid and strong, you might find traces of the hard road, the lonely nights, the two little kids to raise. Working menial jobs and searching the city for deals and digging junky cars out of the snow. Every day. Every night. Alone.
Throughout the years of my childhood she marched along, tortoise-like from job to job, task to task, slow and steady, buying groceries and plodding away at the accounts receivable. To this day I still don’t know if there was a more complex person under the surface. Part of me believes there had to be, that nobody could be that uncomplicated, that free of ego. But then I remember my smiling and simple grandfather and I think that perhaps she was just lucky, had inherited the right traits to help her survive.
I still get flashes. My school lunch waiting for me on the kitchen counter. A hardcover novel from the library beside her bed. An ironing board left standing open in front of the television.
The whistle blows and my game is over. I look up to the bleachers, and there she is, crossword puzzle in her lap, patiently waiting. She was never late. Never left me wondering. No matter how long her day had been or how much more there was to do. No matter that money was short and that there would be no vacation. She quietly did what had to be done. She was unwavering, a rock, a subtle superhero.
I still get flashes. My school lunch waiting for me on the kitchen counter. A hardcover novel from the library beside her bed. An ironing board left standing open...
How can you ever thank someone? A world with so many distractions, so much useless noise. So many ways to be nudged off balance, led astray. A young boy from a separated family, missing that daily paternal direction, does she know where I might have ended up? How lost I could have been? Without her there, always there. Her two feet on the ground. Her slow, steady advance. That calm disregard of any misfortune.
As the years went on I would go visit her often. TV Guide always handy, her line-up of shows ready for the evening, we would just sit there and watch her shows and shoot the shit. Never did I feel the need to impress, or overcompensate, or subconsciously plead for approval. A simple conversation with someone you’re absolutely comfortable with, that’s what I miss the most.
Walking out the doors of my old home one evening I stood to take in the pleasant air and attempt to catalogue a discomforting feeling. Here was my own life, full of its love and loss, its regrets and laments. Dealing with the realities of my own adult experience I was finally able to understand what had happened, what she had given – and it was overwhelming. All that she had done for me came into focus, colored in by all that I was now doing. My present was lighting the past. One day you realize that the seemingly ordinary was actually pretty fucking extraordinary.
Normally it takes us too long to realize all that we’ve taken for granted. Time goes on, and small fissures in relationships grow into false legend, become apparently immutable. Thankfully with my mother there was no deep rift in the way, no old resentment that needed to be torn down. She never judged me. Never put me down. Not once.
As time goes by and with the more people that I meet, I am able to see that the simple and unassuming woman that you might not have noticed had a strength and wisdom that most could learn from. The kind that can perhaps only be measured in the memories and words of her children.
One day, probably five days in, a long-term care doctor came down to talk to me about her options. I walked with the doctor along the halls of Emergency. The place was becoming very familiar. The buzzer from the main door letting people in and out no longer felt loud and obtrusive, but now fit into the blurry white background of this unsolicited new home. Other patients lay in temporary beds in the hallway, family members sitting with them, big poufy winter jackets still on, looking so worried, so uncomfortable. Amateurs.
The doctor and I walked until we found a rare empty space down the corridor. I could see the central hub of the Emergency area, a large pentagon desk with dedicated clipboard-carrying worker bees swarming around, flying in and out. The doctor standing with me was stiff and awkward but also funny and kind, and I filled him in on what had been happening down here.
The talk returned next steps and again I was forced to stand there and politely discuss the absurd. I did my best. I absorbed the blows. Stood tall, stayed strong, all that. I discussed best possible scenarios and used the comforting distraction of logic and common sense to help me through the impossible.
Eventually, we make it back to the front of the Emergency area. She is lying in that bed, wrapped in blanket after blanket that I’d smuggled in from various carts around the hospital. I sit down on a stool beside her. The one good thing that came from the cancer is that her hair is short and shows her strong handsome face, lets us see those green-grey eyes.
The doctor speaks slowly, articulating each word. She recognizes him. Becomes more alert. Conscious interaction has become increasingly rare. She acknowledges some of the doctor’s questions, ignores others. She moans and complains about the bed, that thin plastic-cushioned bed that was meant for brief visits not week-long stays. And then suddenly rips a hole in my heart when, unexpectedly, she moans “I want to go home...”.
Soon. Soon, Tobie. For now, we have to stay here.
The doctor continues on, being very nice. He does his job and explains details to her, but he is really talking to me, and I nod in her place.
Finally, he begins to end the encounter. This is the last social interaction she will have with anyone. His bedside manner is quite good and as he picks up his clipboard he makes one or two funny remarks. Before walking away he looks at her and says “you’ve got a good boy here.” At this, a tired but satisfied smile lights her face, and she slowly lifts her hand, placing it on the side of my head, sliding it down to my cheek.
A hand on my face as a final caress.
I get up from the chair and adjust the monitor on her index finger. There was a dip in oxygen level. I fiddle with it, look up at the screen, make sure to get it just right.
Outside the room, I can hear footsteps down the hall, the sort of linoleum echoes that can only come from an empty hospital corridor.
Now, finally, she is lying comfortably. In this big bed in the small room with the clay-colored walls. We’re on a floor meant for such stays, with a staff that knows how to handle these things.
Our vigil continues, but it has now reached a sad, conquered state. All parties have taken a terrible beating. My mother has been off of any sort of fluid or nourishment for days. She is, for all intents and purposes, being starved to death. Her body is in its last stages and I don’t dare to look under the covers, don’t want to see any of it, the glimpses I catch of her arm enough to burn me forever.
And her family has been devastated. The weeks of sleeping on couches and cots and chairs. The emotional damage of having to watch a loved one slowly wither. The certainty that this absurd and ultimate unfairness has melted away the last of your simple joy.
The toll of such things can never be fully measured. Today, I went shopping for her coffin.
Her body is in its last stages and I don’t dare to look under the covers, don’t want to see any of it, the glimpses I catch of her arm enough to burn me forever...
Few comforts are left. But there is this stick with a black square sponge on it. In other settings it could be used to touch-up paint on a wall, but here it absorbs water and is applied around her mouth, moistening her dry and cracking lips. I do this often, and sometimes, if the morphine-based drugs that she is now on are not in full-effect, she reacts and moves her mouth to receive the pleasure.
Burdened by such uselessness, one goes insane with impotence. So I scramble for something. Earlier this week I snuck in a bottle of Bailey’s Irish Cream, one of my mother’s only indulgences. Never would she actually buy herself a bottle, no, that would be too much, but the times she received one as a gift she would hide it away in her empty liquor cabinet and occasionally pour herself a taste. And so now I give her some. I take that sponge that is meant for water and pour some Bailey’s on it and apply it to her lips, letting the warm sweetness roll into her dry, cold mouth.
I know, I know, it’s not allowed. But it was the only thing I could think of, the only thing of measure that I could give her… and so I did it.
This year my little sister had a baby. Her middle name is Tobie.
What losing our mother has done to my sister I can only imagine. She still often sleeps wearing her t-shirts. I can remember the two of them in her big bed, my mother sitting in her familiar book-reading pose, her hand on my sister’s head, listening to her vent about this or that. They were as close as a mother and daughter could be, and whatever anguish I feel must be compounded on my sister by the female bond they shared.
My mother missed her children’s weddings. Missed the birth of her grandchild.
In that grand balance up in the sky, measuring who gave and who took, my mother’s ledger is a study of injustice. I doubt there has ever been an adult soul who took less, whose footprint was lighter. She was not perfect, but her faults were small and were her own, never imposing them on others. She deserved more. A lot more. And did not receive it.
And so, along with all these scars that we now carry, there is a larger unresolved matter that I must deal with. How do you reconcile what was with what should have been?
I still imagine her alone in her apartment, in that year before the end. Coming out of the shower, one step slowly at a time, bracing herself against the bathroom wall, teetering on stick-thin legs. I can see her grabbing a towel, beginning to wrap it around herself, but then stopping and seeing her reflection in the mirror. Shoulder blades protruding through the thinnest layer of skin. Face emaciated. Scar on what was left of her right breast. Belly bloated as if five months pregnant.
That she often had to deal with this on her own, completely alone, breaks my heart in ways that can never be expressed. That she handled this supreme unfairness with queen-like dignity, never complaining, still going to work and driving herself around, fills me with a tragic sort of serenity, a subtle pride that allows me to still smile.
Can there be beauty in the horrible?
Is there a way to salvage some light from such darkness?
Are we allowed to?
Are we obliged to?
The last days she gave barely a sign of life. We were told that patients in this final stage would sometimes be struck with a sudden burst of energy and awareness, becoming lucid and wanting to speak with their loved ones. We sat by her bed for endless hours and watched and waited. But it never came.
She just lay there, feeding only on the drugs that kept her free of pain. Everything other than breathing was gone, and the breath that came from her mouth was cold, a haunting hollow breeze. She would not even react to the offers of water on her lips. Nothing.
Head tilted slightly up, breaths barely audible. She was almost gone. Doctors who came by could not elicit reactions from her. She could not manage a single sign of awareness or basic human function, nothing, except for one thing, one action that defied reason and lasted all the way until that final day…
Whenever my sister or I put our faces over hers and whispered the familiar words mommy kisses?? – her mouth would come to life, lips meekly puckering, doing her best to try and kiss her children.