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Remembering My Mother, a Woman Who Deserved So Much More

05/10/2015 07:46 EDT | Updated 05/10/2016 05:59 EDT

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Mother

The room is a square. Walls coloured 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, stands 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 cold, pale sky. My mother is lying in the bed, head tilted slightly up, slowly dying.

We've been here for almost a week. Camped out in this room. Pieces of our lives have been moved in, obligingly attempting to paint normal the impossible. A picture frame beside the bed. One of her cute little frog statuettes. The stereo from her kitchen counter playing favourites 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 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.

*

Two weeks earlier my mother had come over for lunch. I waited for her at the top of the stairs as she methodically manoeuvred her skinny legs and bloated belly up my front porch. She walked past me and into my apartment, dropping her bag and slipping off her shoes, chatting away with the ease of an old friend.

I had finally reached the age where getting together with your mom was no longer an obligation, but an acceptable and even enjoyable social activity. A simple conversation with someone you're absolutely comfortable with, that's what I miss most.

And so we sat on the couch and caught up, but before long she said that she felt weird and needed to lie down. For my mother to make a big deal of something, even her condition, was rare, so silent alarms were tripped. When we arrived at the emergency room 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 rushing through the big swinging doors.

We spent the next seven days behind the doors of that emergency room, tiny players living out a real-life public theatre. With no spots in intensive care and no rooms available on any of the long-term floors, Emergency was the best option. Her blood pressure was extremely low. The cancer, now at an advanced stage in her liver, was not the direct cause; it seemed like an infection, perhaps from the five litres of fluid that had been sitting illicitly in her midsection for the last eight months.

And thus began the slow march towards the inevitable. I suppose our steps were tragically typical: denial, anger, indefinite sadness, and eventually, trance-like acceptance.

Those first days were stereotypically tough. Watching them stick an intrusive breathing apparatus to her face that she constantly tried to rip off. Waiting anxiously for the nurses to look our way, to come by and do something, anything. Making phone calls from the cramped waiting room, letting the relatives know that they should probably start booking plane tickets. And the bed, that 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. That was the beginning of the move from active treatment to palliative care. There was indeed an infection, they said, and although we would continue with antibiotics, any other elaborate attempts to pull her out this hole of low blood pressure would just make things worse.

I noticed their language subtly changing. Words were now 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.

Face to face with this new doctor, I immediately understood my sister's hysteria. 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.

I paused.

He got even more direct.

Do I resuscitate?

A ridiculous question. I paused again. He ploughed 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, people 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 with his powerful hands.

And so I told him that I understood.

He waited for more.

No.

Don't.

Saying out loud, in not so many words, 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. Laughing 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 messy 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 nights alone, 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.

Throughout the years of my childhood she calmly moved from job to job and task to task, 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 ego-less. 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.

Her parents had escaped the war and made it over from Poland, surviving the Germans and the cold Russian forests. After some early years living in Montreal's poor immigrant neighbourhoods, she grew up in the suburbs of the '50s and '60s listening to vinyl records and wearing black-rimmed glasses.

From the bits and pieces, I can tell that her childhood was pretty typical and fairly trouble-free. But there were some unsettled issues that lingered. The difficult years and horrible losses had made accepting the simple good fortune of their nice new life impossible for my grandmother. The children of survivors often have to bear the scars of their parents, and although relatively minor in light of other family dysfunctions, this bitterness and perpetual dissatisfaction did cause a rift between parent and child that my mother was never able to recover from. She forgave everything else -- an ugly marriage, difficult financial and personal situations, a life's story that was far from ideal -- but was unable to get over the emotional barriers built between mother and daughter. She was able to look past all of it and move ahead without regret, without lament, but right up to the end she could not fully forgive my grandmother.

She still visited her every Sunday, still handled her affairs and looked over her mother the way a loving daughter should, but there was a cloud, a seemingly impenetrable impasse that she held onto as immutable.

One day, about six months from the end, while sitting in the oncologist's office, I tried again to bring up this unfortunate and now unnecessary resentment. We were still hiding my mother's condition from her, supposedly to save my aging grandmother from worry. But now I see that addressing the sickness and all its consequences meant addressing so much more, meant finally tearing down whatever had been built up between them and becoming close with her mother in a way that she felt was impossible.

I told my mother as straightforward as I could that you need to bring her in closer and get over whatever it is that you're holding onto, but she would not budge, could not look past the relatively small issues that had grown into false legend. It pains me that she held this resentment with her to the end. It disrupted her peace.

I guess this is a flaw I can call my mother out on. But unlike most who have to deal with such relationships, she did not follow the typical cycle and do what was done onto her. Instead she made a conscious effort do things differently. If my grandmother was severe, my mother was relaxed. Where her mother was critical and conservative, mine was non-judgmental and liberal. In rebelling against what she had endured she moved to the other extreme and displayed an almost complete lack of motherly authority. The freedom I experienced during my childhood was uncommon. I was the young man of the house. Learned to fend for myself. Was given the liberty necessary to nurture my dreams.

In general this was positive, but inevitably there was some collateral damage. By not receiving even the slightest peep of parental criticism, I was doomed to repeat my mistakes longer than necessary. With my mother's retreat from power, I had to assume an adult role earlier than I should have, and in triumphant validation of an ex's complaints, yes, perhaps became a bit too independent, a bit too hard-headed in the doing of things my way.

Even if sometimes too quiet, sometimes lacking in expressiveness, my mother did her best to ensure that her children would have nothing to bear against her. And if that meant that I had to learn some things the hard way, then so be it. I see now that if these are my only grievances, I should count myself as very lucky.

Because in a world where responsibility is so often shirked, where everything is cheap and easy and commitment is disposable -- she was remarkable. A book always in her bag and a crossword puzzle in her lap. Patiently waiting.

No matter how long her day had been or how much more there was to do when she got home. No matter that money was short and that there would be no vacation. Nothing fazed her. 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 book 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. Driving me to tournaments and picking me up from football practice. Waiting for me in the car when the weather was bad.

She was never late. Never kept me waiting for her.

How can you ever thank someone? A world with so many distractions, so much useless noise. So many ways to be led astray, knocked off balance. 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 for me, 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 leave my new apartment and go visit her often. We would eat dinner and watch TV and sit on the couch, quietly enjoying each other's company. She always had the TV Guide handy, always had her line-up of shows ready for the evening, and we would sit there and watch her shows chit-chat away. No matter how high or how low the moments in my life, no matter the mistakes or decisions I made, never did I feel the need to impress, or overcompensate, or subconsciously plead for her approval.

I'd kiss her goodbye and walk out the doors of my old home, and despite the pleasant evening a dark feeling would often linger. I had a new life that was busy and stress about the future. I had loved and lost. Been alone. Regretted my actions. Now that I was old enough to call myself a man, now that I had to deal with the handling of my own life, I was able to understand what had happened, what she had given -- and it was overwhelming.

All that she had done for me came into focus, coloured in by all that I was now doing. My present was lighting the past. One day you are able to see how much was sacrificed, how much was done. One day you realize that the ordinary was really extraordinary.

Normally, it takes us too long to realize all that we've taken for granted. 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 to me. Other patients lay in temporary beds in the hallway, family members sitting with them, big poofy winter jackets still on, looking like amateurs. That 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.

The doctor and I stopped walking when we found a rare empty space in the corridor. I could see the central hub of the Emergency area, a large pentagon desk with worker bees swarming around, flying in and out. The doctor standing with me was stiff and awkward but also kind and funny, and I filled him in on what had been happening down here. Then the talk returned to "the next step" 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. I did this even as the beating heat boiled inside me, as I battled ugly images, swallowed screams. All that had happened, all that will never be.

Eventually we make it back to the front of the Emergency room. 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 now short and shows her strong pretty face, lets us see those sharp green-grey eyes.

The doctor speaks slowly, articulating each word. She recognizes him. Becomes more alert. Conscious interaction had 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 mumbles "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 nice boy here." At this, a tired but bright 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 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-coloured walls. We're on a floor meant for such stays, with a staff that knows how to handle these scenarios.

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.

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 that 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 is compounded for my sister by the female bond that 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 never harmed or blasphemed or burdened; 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 I reconcile what should have been with what was?

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.

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