“Survival” by Taslim Jaffer
Also published in the Humber Literary Review: vol.10, issue 2
My mom’s illness barrelled its way from the inside out. By the time it showed up on her face and arms, her insides were already turning to stone.
Scleroderma is an auto-immune disease in which the body produces too much collagen, the ingredient in moisturizer lotions that promises you the firm face of a 15-year-old girl. When your body goes into hyper-production of collagen, your tissues lose elasticity. Sometimes the disease affects only the inside of the body, hardening the organs. Sometimes the disease wreaks havoc only on the outer tissues, disfiguring features, discolouring the skin, and requiring the amputation of extremities.
I sat beside her on the couch in her living room when she first laid the word, like granite, on my lap. She dissected the Greek for me, told me she would slowly lose her ability to digest, walk, breathe. “The doctor says I have five years to live.” She handed me a tissue. Sunlight streamed in from the bay windows.
I don’t know how the weight of her news allowed me to leave her home and go back to the speech therapy clinic for my afternoon clients. But now when I think about that moment with Mom, the heaviness is more like a warm blanket I’ve kept close; it was a moment with my mom, after all. And twelve years after her death, many others have begun to fade.
In the weeks that followed her diagnosis, Mom underwent tests to determine her baseline organ function. I held on to every shred of hope I had, willing a doctor to look at a lab result and say, “Actually, it’s not that bad. We have something that will fix it.” But just like they don’t know what causes this disease, they don’t know how to stop or reverse it.
During this period, I became pregnant with my first child, my parents’ first grandchild. Being able to tell my mom I was pregnant was a tainted joy, like a beautiful portrait smeared with grease. Cross-legged at the foot of their bed, I handed my parents a little poem, a cutesy rhyme I’d found on the Internet, and watched her face illuminate as the news sunk in.
My parents were between homes at the time, having sold the last house we – my parents, my brother and I – lived in for a one-level rancher that would be easier for my mom to navigate. For about three months while their new home was being renovated, Mom and Dad stayed in our spare bedroom. My husband set up a T.V. at the foot of their bed so Mom didn’t have to go down two flights of stairs to our basement. There were many times during my first trimester that I came home from work early, fighting the nausea of all-day sickness, and lay in bed with Mom, watching daytime shows.
“Do you want to eat? What do you feel like?” Mom would ask, and I’d make a face, feel my tongue thick and heavy in my mouth, and try to decipher what my tastebuds wanted and what my stomach would hold on to.
“I don’t know. It’s either dill pickle chips or kiwi. Or both.” She’d laugh at my indecisiveness and the weird combinations I’d crave. Reclining in the bed with the remote-controlled mattress we had purchased, I listened to her shuffle in the kitchen just steps away, grabbing a bowl from the cupboard and crinkling open the potato chip bag. My mom’s way of mothering had always been selfless giving and there was no time that she gave of herself more than when we were sick. It wasn’t just the crackers and ginger ale, or the Vicks VapoRub she massaged into our chests. She worried about us. I equated that worry with how a mother should love but now as I struggle with my own anxiety over my kids’ wellbeing, I wonder if I mislearned something.
When my daughter, Inaya, was born in 2007, my parents met her in the hospital. Scleroderma had tightened Mom’s smile, but she vibrated with renewed energy. In the beginning, Mom managed cradling Inaya with pillows propped under one arm. She could bend over the premie-sized diaper, open the tabs and gently caress them closed onto Inaya’s tiny belly. Once Inaya learned to roll, Mom became more of a “backseat driver,” hovering close, dispensing comments and suggestions that sometimes made my eyes roll back. As my daughter grew from infant to toddler, Mom told me about the plans she had for her future school-aged grandchild. “She’ll come to my house after school for snacks. I’ll have something nice waiting for her.” At this point her body was less functional than her doctors had predicted it would be. The five-year prognosis felt like a generous lie by the time my daughter turned one. But we never discussed that.
Maybe you know someone living with an autoimmune disease. At the time of my mom’s diagnosis, in 2006, I had heard of Multiple Sclerosis and Rheumatoid Arthritis. But I didn’t understand that autoimmune means the body attacks itself. Generally, under stress, our body’s natural defence system is suppressed – which is why it’s easier to catch a cold when you have a lot on the go. But there are some types of white blood cells that are activated by stress. These are the cells that wage war against the body.
It seems counter-Nature to me. How could Nature program something so hateful against one’s own? Maybe I have too emotional a response to this, maybe science is science. Maybe I’m forgetting that as advanced as we are in our innovations and relationships, we are still a part of the animal kingdom, at the mercy of whatever it is that programs our cells to do what they do. Like in matriphagy, when insects – some spiders, scorpions and nematode worms – devour their mothers. The mother crab spider will feed her offspring unfertilized eggs, but the young won’t stop there. They eat their mother over a period of several weeks. Eating their mother provides the nutrients that allows them to grow, offering them a better chance of survival.
My mom carried the mental load and did a lot of the physical work, too, of keeping the house orderly and raising my brother and me. She was built that way, to be in control and, because she married a man who was not, she could never let go of anything. My dad showed his commitment to our family by acts of service. He cooked on his days off, stopped at the store when we were out of something, drove us to school after returning from a graveyard shift, and generally did what was required to be an equal partner in raising us. But everything was coordinated by my mom. When I was younger, I thought she was a control freak, someone who had to have things done her way. Now as an adult, I realize that she had to take charge, or the wheels would stop turning. From the finances to the child-rearing, much of the research, decision-making and follow-through were carried out by her.
My mom was strong-willed, the backbone of our family who moved us from Kenya to Canada and rode the rollercoaster of immigration. As a newlywed living with her mother-in-law, a new mom and a full-time administrator at a bank in Mombasa, my mom also managed the details of our citizenship application. She had systems that worked for her, and if she left them to anyone else, she felt things would fall apart.
I have all the correspondences regarding my parents’ application to come to Canada. Each sheet of paper is protected in a plastic cover, pages are held together by paper clip and filed in a labelled folder. When my dad brought over this treasure last year for me to have, I marvelled at the organization and the pristine condition the papers were in, considering how many moves we had made. “That’s your mom,” he said.
Both my parents shared many fond memories of their birthplace with my brother and me while we were growing up. Living in a beautiful port town right on the Indian Ocean, during a time when life was slower, when people walked places and had the time to stop in for impromptu tea, my parents were able to bank enviable memories. “Whenever we needed anything, we would just knock on someone’s door,” my mom said to me many times when describing life in Makupa Flats. Her eyes twinkled when she recalled Sundays with her family watching Bollywood films at the theatres or walking around the Lighthouse district, sampling street-side mogo chips sprinkled with cayenne pepper and lime juice. “And the madaf,” she smiled. “We would drink it straight from the coconut.”
While my mom’s doctors were trying to determine the root of her relentless cough, just prior to her diagnosis of scleroderma, we visited a friend who had recently opened her naturopathic medicine practice. Neetu met us in her third-floor office in Richmond and motioned for us to sit in the chairs across from her desk.
“Aunty, what’s going on?” Neetu asked.
“For the last few months, I have had this cough. Sometimes I cough so much I vomit. First the doctor gave me an inhaler but that didn’t do anything. Then they said it could be acid reflux but it’s still not going away.” My mom shook her head. She offered a small smile to Neetu. I wonder why she chose to smile when she was clearly frustrated. Then again, I recall her smiling, tight-lipped, through jabs about her bigger body. She also smiled, head tilted to one side, when she spoke to native English speakers. She was self-conscious about her command of English though it was the language of instruction at her school since primary grades. She would tell me she wasn’t very good at speaking it.
“Why don’t you tell me about your childhood?” Neetu said. My mom launched into the rose-coloured past while Neetu nodded, and I focused on the wood grain of her desk.
“And then when you came to Canada?” Neetu prompted.
A pause. I looked at her. “Well, it was a hard life. Abdul and I didn’t have jobs and we tried to work with family in business and it didn’t work out.” Another pause. “Yeah, it was hard. I got a job folding laundry at the hospital. Abdul worked different jobs, too. But we made sure our kids got everything they needed.” A genuine smile here as she looked at me. I shifted in my seat.
“Would you say you were homesick? For Mombasa?” Neetu asked, gently.
“I have been homesick for Mombasa the whole time I have been here,” my mom responded without hesitating. She’d never told me that before. Or had she? Isn’t that what she was saying when she described feeling the wind on her face while walking along Bamburi Beach, when she talked about her neighbours and extended family being close when anyone was needed, when she reminisced about the freshness of the food, the weather?
“It’s not uncommon for immigrant women to feel this kind of homesickness which is a type of grief. And grief,” Neetu touched her chest, “is held in our lungs. Sadness is stored right here.” And when, I wonder now, would my mom have had the time to process that kind of loss and come to terms with it? With no place of their own, my parents travelled between B.C. and Alberta to stay with different family members and try to start a life. It took over a decade before that happened; in that time, both their children were school-age and we became my mom’s focus, away from family difficulties, away from the reality they found themselves in, away from the pain of leaving what was familiar.
Parents know that, although the rewards are immeasurable, they come in bursts between sleepless nights and dinnertime tantrums, and, later, teenage eye-rolls. And we must learn to be ok with delayed gratification, or it will consume us. Like the caecilians – the limbless amphibians who look like worms – who strip away at their mother’s skin, not actually killing her, but shredding just enough of her for mother and offspring to survive – motherhood will pick at bits of you, make you bleed, if you give everything you are to it.
There’s a saying in Kutchi, my native language: “Tu munji loy piythi” (you’re drinking my blood) that a mother will say to a child who is driving her up the wall. But there’s a difference between ‘you’re driving me up the wall’ and ‘you’re drinking my blood.’ The latter implies, you are sucking the life out of her. These are expressions that move their way down from generation to generation. Our predecessors model for us how much of ourselves we sacrifice for our young. In Asian cultures, mothering happens as if the umbilical cord was never cut. It’s a devotion that looks like bringing snacks to the homework table, making lunch for the college student, and being more physically present. It’s been described in a Stanford study comparing Asian and Western parenting styles as an “overlapping of selves.” The Asian mom doesn’t say, “Go get your homework done.” She stays close while the child does their work, ready to help or encourage as needed. I often say to my kids, “Let’s study this together. I’m right here. We got this.” The trouble is, when something happens to my children, it happens to me, too. A knee injury that prevents my son from playing soccer for a month becomes my emotional pain. A project my daughter is fretting over becomes my concern. While the study found that children of both styles of parenting see their mothers as positive forces, I wonder if anyone asked the Asian moms, “How do you feel, carrying your children on your back all day?”
Inaya was born five weeks early. Thirty-six hours after the shock of my water breaking, I had a tiny infant in my arms who required a naso-gastric tube. After a five-day stay in the Special Care Unit, once she was able to feed on her own, we got to bring Inaya home to our yellow split-level where we had painted her nursery a whispery, light green.
We placed her, propped up between two rolled-up nursing blankets, in her car seat, on her bedroom floor. My husband and I looked at each other. Now what? Inaya was fast asleep, looking peaceful, while my insides fluttered. That nervous feeling would compound over time with sleep deprivation, difficulties with breastfeeding, and isolation as my husband worked over 50 hours a week. Meanwhile, my mom’s health declined.
Before Inaya turned two, on an uncharacteristically cold afternoon in March 2009, in a room filled with family, my mom took her last breaths. All day, the air had felt heavy with waiting, as though our collective prayers and sadness accumulated in each air molecule, moving in and out of our bodies. When the nurse proclaimed her ‘gone’ after checking for her heartbeat, I was propelled into the life of a motherless mother.
I remember being perched on the edge of her hospital bed as we waited for a spot to open in palliative care. My mom looked at me from where her head rested on the pillow. Her eyes were sunken, tired.
“You are so beautiful,” I murmured.
“Thank you,” she accepted. “So are you. We are the same.”
I didn’t think we were. As a mother, she had 30 years of experience. She had uprooted her life with her husband and one-year-old me, moved continents, worked in physically taxing jobs, and gave her children opportunities to succeed. Our carpet always had lines from vacuuming, and she hosted countless dinners for family and friends. Until she was diagnosed with scleroderma, I was convinced she was invincible.
We buried my mother on an overcast Thursday afternoon. What I have yet to bury is her pain that I carry like a scorching stone. That pain is etched in the thick skin her body grew and in her eyes staring back at me in her last photos. It’s not present most moments now, but every so often, I feel its heat. That’s when I do something she loved – put on a Hindi film song and sing the words I know. Then I can see her in my mind’s eye, her whole face stretched out in a smile, her shoulders and hips moving to the beat.
My daughter is now fourteen. Sometimes when I look at her bent over her math homework or making a pass on the soccer pitch, I remember the scene at my mom’s hospital bed. Her exact words were, “We are the same. All three of us.” I had looked around the room then, wondering who my mom saw with us. “Inaya,” she murmured. Occasionally, when I look at Inaya I remember that moment when my mom named her granddaughter and included her in our sameness.
The three of us are determined, hard-working, and giving – admirable qualities. But there is room for evolution, to unlearn things like martyrdom, to refuse to be consumed. Insects were the first to take to the sky; over time, their short, immobile appendages, that could only be used for gliding from high places, morphed. The result was longer wings that moved by the insects’ control, allowing them to explore new territory, to reach food that was otherwise unattainable, to survive. With this new skill of flight, they lived abundant lives, and their descendants, generations later, reap the benefits. Perhaps these appendages are like the tools I’m gaining through therapy: how to maintain my individuality in motherhood, how to identify the beliefs that stunt my growth. In time, the appendages may evolve into wings, powered by my own strength, and passed down to my daughter who, in seeing me fly, is inspired to do the same.