Onwards We Go

By Stephen Mohan

I lost my left eye to cancer at the age of two. I haven't let this deter me from working as a steamroller driver, ski racing coach, coffee bean delivery man, wooden boat shipwright, bicycle mechanic, whale watching skipper, fish farmer, vineyard worker, tall ship boatswain, and snow gun operator. I’ve illegally driven across a parade r

• Language: English
• Publisher: Abominable Mohan Publishing
• Release date: Sep 30, 2017
• ISBN: 9781775095019

Stephen Mohan

When he's not in the hospital getting a tetanus shot, Stephen Mohan lives on Vancouver Island in British Columbia with his wife Barbra of 'Calamity Kid' fame, where he wrestles everyday between the grief and loss of his son and the gratefulness he feels of being a survivor himself.

Book preview

Onwards We Go

Copyright © 2017 by Stephen Mohan

All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, digital scanning, or other electronic or mechanical methods, without the prior written permission of the publisher.

Published 2017

Abominable Mohan Publishing

British Columbia, Canada

[e-mail]

ISBN 978-1-7750950-1-9

Cover photo by Barbra Mohan

A portion of the net proceeds of every book sale will be donated to the following institutions, each of which played a significant role in our journey:

Ronald McDonald House British Columbia

Canuck Place Children’s Hospice

BC Children’s Hospital

Onwards We Go

a memoir by

Stephen Mohan

DEDICATION

for the indomitable children and teens of the oncology ward: the undaunted Superheroes, the courageous Warriors, the most valiant of Knights, the toughest of Prizefighters, and the beautiful brave Princesses

for Barb, who has seen circumstances no mother should ever have to bear

and for Jasper

prologue

It’s A Magical World

I watch my twelve-year-old son through the kitchen window of the old house. He’s playing alone outside. The rocky beach is one hundred yards away. He has navigated his way past the boardwalk and the dock, along the shoreline of rocks, and over the rusted, broken-down railroad tracks, the same iron tracks that used to haul the cradled wooden fish boats ashore on this small island in British Columbia. He pulls himself up on the end of a long creosote beam and carefully puts one small rubber boot in front of the other, like a tightrope walker at a circus. He uses his homemade driftwood sword for balance. Then he does a dramatic leap off the opposite end into the coarse shell sand and immediately goes into a run up the adjacent rocks.

He makes his way past the narrow gap that separates our island from the mainland at high tide. It’s high tide now and there’s a good wind blowing, making large enough waves to send a small spray up off the rocks. He makes a beeline to the water’s edge and pauses, just standing there, losing himself in his thoughts to the suck and pull and swish before him.

Even from this long distance I can feel that mesmerizing sense he’s experiencing. Growing up I had the same freedom to roam outside – to be immersed in my own imaginary world. Like him, I’d come across something so entrancing it would break the spell of whatever game I was playing: maybe an odd-shaped cloud passing against a clear blue sky, or a swath of tall pine trees swaying back and forth in a strong wind. Now here was my own son, so fortunate to have the freedom to chase dragons and command soldiers on his own piece of free earth, yet he too is awakened, in awe of wind and waves and the smells of the sea.

I think to myself: I am so blessed. I have everything a man could ask for. I have a loving wife and a beautiful son. I have a safe warm place to live. I’ve found true happiness. I actually mouth the words: My life is perfect.

I’m broken out of my trance by the smell of lunch being overcooked. Time to call him inside before he disappears around the point. I open the creaky door and I’m hit with a whirled backdraft of chimney smoke coming over the roof. It’s chilly outside. The boughs of the nearby red cedar trees are pumping up and down in the wind. Their branches are heavy with the weight of young cones ready to yield their pollen.

I ring the dinner bell at the top of the porch. Its clangs are carried away in a gust.

Jasper! Lunch time! I shout, but I doubt he can hear me anymore. I shield my eyes from the sun’s glare off the water. He has moved directly into the light. I’m losing him.

An intense gust carries a cloud of smoke out to sea. A small branch from a nearby cedar falls to earth…

Jasper is just a silhouette now: a boy in a wool toque, a dark-colored winter jacket stuffed tightly inside a life-vest, with his clunky rubber boots, and his wooden sword ready in hand. He’s all but a shadow against the shimmering diamond backdrop of the sea. He is disappearing around the point. He has gone beyond the reach of my calls. I strain to catch just one more glimpse of him, but I’ve lost him in the tumult of wind, wave, smoke and light.

chapter one

Monocularity

Wednesday, November 23, 2011, 10:00am

Jasper and Barb and I are at the B.C. Children’s Hospital in Vancouver. Today was an appointment in the Oncology ward with Dr. Strahlendorf and Nurse Naomi. The news was not good. As I processed it, my surroundings began to reel and spin. The ground fell away from before me. I had to lie down. Right away. I’d never passed out before. I’m going to pass out… Too many sensations blasted me at once: the nauseating scent of hospital bleach cleaner, the overpowering bright fluorescent lights, the crinkling sound of the paper laid over the examination table as my body collapsed over it, and then the cold foreign glass of water pressed into my hand. I pulled deep breaths to keep the lights from going out. This couldn’t be happening…

§

One day in 1972, when I was two years old, my mother found that my eyes gave a strange reflection. She took me to a doctor in Edmonton, Alberta where we lived. The doctor assured her that I was only experiencing some type of infection and that it would soon disappear. My mother refused to believe this diagnosis, and her persistence that it was something more than a simple infection convinced the doctor to conduct further tests. It was discovered that I had a cancer known as retinoblastoma in my left eye. Because of my mother’s tenacity I was immediately slated for treatment. Unfortunately, in the 1970’s retinoblastoma was still a rare form of cancer. I received horrible amounts of radiation treatment. They managed to save my right eye, but the cancer had spread too fast in my left, so it had to be removed. A glass orb was sewn in its place, and I continue to wear a prosthetic eye over that implant to this day. My right eye would remain intact and functional, but the heavy doses of radiation left me with a slight concave indentation to the temple on that side. The entire ordeal was a traumatic experience for my parents, and my infant self too.

Growing up, I didn’t let my handicapped vision slow me down. In fact, most of the time I forgot about it altogether. Despite everyone telling me that I didn’t have any depth perception, I rode bicycles, ski raced, played baseball, and took part in all of the activities that most young boys do. Sometimes I would see myself in a mirror and be reminded of the prosthesis. I’d wonder if it made me different in some form or another. Was I special? I couldn’t help but wonder what it would be like if that other eye was still intact and functioning. How does everyone else view the world? Mom of course kept a baby album of me, and there are a couple of photos in there from before the cancer, when I still had a full range of vision. I’m a toddler, playing in the snow, looking back at the camera with two bright beautiful eyes. But I was far to young to remember what stereoscopic vision might be like.

As my body grew, every few years I would go through the tedious, several-days-long process of having a new prosthesis made and fitted. Usually I would get fair warning that I was due for a new one, as it would start to feel loose and sloppy in its socket. If it was too small it wouldn’t stay seated properly and it would wander to a position in which it was staring off in some random direction – no doubt completely opposite of where my good eye was looking. This would leave me appearing more than just a little ‘bat-shit crazy’. I couldn’t tell when it wandered or spun around like that. I would come home from school and catch a surprising glimpse of myself in the bathroom mirror, "Oh great. How long has that been staring off at my nose?"

I lost my fake eye once during a school trip to the swimming pool. I did a backflip off a tire swing, and when I resurfaced I knew right away I was missing something important. One of my schoolmates announced very loudly that Mohan’s lost his eye! and, of course, all the girls shrieked and fled the water. The boys thought this was a terrific opportunity and jumped in to be the first to find it. Yep, time for a new eye.

As I matured I often pondered what my overall lifespan would be as a result of previously having had cancer. Was I at any pronounced risk? Would I die early in life? Mom told me that I was in full remission and that I’d lead a ‘normal’ life, but I would be more susceptible to other forms of cancer in my future years. So I mostly put it out of my mind. I was blissfully unaware that I had overcome great odds and become a ‘Survivor of Childhood Cancer’. I would go about experiencing as carefree a childhood as most other boys would.

Chapter two

Pine Valley

Friday, November 25, 2011 at 6:50am

The last few days have been a whirlwind. Jasper had headaches. Then the headaches were accompanied with vomiting, so we took him right away to the Emergency ward at the Powell River General Hospital. On Tuesday, he had a CT scan there. Wednesday: we arrived at the BC Children’s Hospital and got the news from Dr. Strahlendorf that an anomaly has shown up on his brain. He got an MRI scan followed by a surgery - to relieve pressure on the brain and to take a biopsy. Thursday was recovery from surgery. It’s Friday now and we are waiting for pathology of the biopsy, which will determine the next steps. The results will be in at 1pm today at the earliest.

§

My Dad ran away from his family in India. His father wanted him to go to law school. On the day of his convocation, for which his family thought he had travelled to Delhi, he actually left by steamer ship to England. When he became a British citizen, he wanted no trace of his past in India, so he dropped his old surname and used his first name, ‘Mohan’ in its place. They wanted to assign him an official first name, which he now did not have, so they simply filled out his papers for him as ‘Man’. There was also some confusion at the time over Man Mohan’s actual age. Back in India, he was too young to enter university, so he had to add some years to himself so he could attend. (In the future, whenever I asked Dad how old he was, he would just smile. I wonder if he himself even knew anymore.) England is where Man Mohan acquired his civil service papers and met my mother, Susan Kennedy. They fell in love, married, and immigrated to Edmonton, Alberta, Canada in the late 1960’s.

They both found jobs with the Alberta provincial government, Susan as a secretary, and Mohan in a map-making department. With a decent job now acquired, Mohan chose to purchase his first car. He proudly showed his co-workers his new acquisition: a beautiful Volkswagen Karmann Ghia that he had bought from a used car lot. Wow, Mohan - nice car. What did you pay for it? they asked. He didn’t understand. Of course he had paid what the sticker price on the window had advertised. The co-workers became aware that Mohan had not known he was supposed to ‘haggle’ for a deal on the car. He had been taken advantage of by the sales staff. Well, they weren’t having any of that. They all marched down to the car lot, reprimanded the salesman for taking advantage of a newcomer to Canada, and got a large portion of Mohan’s money back.

It was a casual working environment in that office. The other staff used to tease Mohan about how he wore a suit to work each day. He told them he felt it was important to look professional and give a good impression. Evidently, the suit worked, as it didn’t take long for him to be promoted to a position as their supervisor, and in even less time he would graduate out of the map-making department altogether to an even higher posting in the workplace. He would eventually make a career with the Alberta Government and become an Assistant Deputy Minister for them.

I was born at the University of Alberta Hospital in Edmonton, on the first day of spring in 1970. My parents had bought a house in a new neighborhood of that city. My Dad was so excited the day I was born. Someone had told him it was a custom to hand out cigars in celebration of a new baby, so he proceeded to go door to door on his street. What he didn’t realize was that everyone would invite him in for a drink. The neighbors were so accepting of him and his good news – even those who didn’t know who he was. Despite Dad not being a drinker, or a smoker, he was invited inside to imbibe at several houses on the block. My mother was quite shocked to see the state he was in when he returned home later that afternoon.

Two years later I would be diagnosed with retinoblastoma. As anyone would imagine, Mom and Dad were worried and scared for me during my treatment. I was too young to remember anything of it. Eventually the disease was curtailed and I was given a status of remission. They breathed a sigh of relief when they could finally bring me home again from the hospital. On the day I came home there was a short fat boy riding a loud two-stroke mini-bike in the alley behind the house. He would ride past, a minute would go by, and then he would come back in the other direction – over and over… The din was akin to an airplane doing repeated fly-pasts. Dad wanted some peace and quiet so that I could fully rest. He marched out into the alley. Instead of raising his voice in aggression at the boy, he said with excitement, "Wow! That is a very nice motorbike you have there. Very nice. How about you take one more trip down the alley, and when you come back I will get a turn at riding this very fine motorbike?" Needless to say, the boy did not turn around and peace was again restored to the neighborhood.

Since their early days in Alberta, Mom and Dad had frequently escaped Edmonton for weekend trips to the Rocky Mountains. They kept a camping kit ready in the trunk of their car and on Friday afternoons they would depart straight from work to Jasper National Park. These trips fuelled their dream to live outside the city. They bought a three-acre heavily forested property forty kilometers southwest of Edmonton off of Pine Valley Road.

Dad would build a house on this property. He had long been a fan of the Western genre in books and films, in particular ‘River of No Return’, which was largely filmed in Alberta. This was his chance to build a chalet style, A-frame timber house. He found some plans in the back of an issue of ‘Sunset’ magazine. He knew absolutely nothing about building a house when he started it. The staff at the building supply store laughed at him when he asked what a ‘two-by-four’ was. Well, he would show them he was more than capable. Many might think it odd that a small East Indian man would have such wild western dreams. But consider all the English folks (like the Beatles) who flocked to India in search of an ashram. Dad set to work, undeterred by his inexperience or the sheer scope of the large project ahead of him.

For a while we lived in a tiny Boler trailer on the property while Dad built the house on weekends. Mom had given birth to a second baby boy. She was anxious about the completion of the new home with the prospect of this growing family. There was no water well on the property yet and she was getting tired of the long trek to fetch a bucket of water from the nearest neighboring house with my brother and I in tow. The Boler was clearly becoming too small for all of us. We were getting too big to be bathed in a garden pail. Dad built a rough ‘cabin’ for the interim winter months until the house was at a stage we could move in. In the end it turned out to be a fine home and, although I have distinct memories of the cedar shake roof leaking like a sieve during the summer rains, it proved to be a cozy and warm haven for the entirety of my childhood years. After we moved in Mom gave birth to another baby boy, and the five of us settled into an idyllic country life on the acreage.

Pine Valley was a fantastic place to grow up. Our property was situated between a turkey ranch and a chicken farm, so although we were forever losing dogs to the rifles of the farmers, it also meant we had vast areas of treed wilderness in which to roam. It was a massive area that included boggy swamps, forests of pine trees, wide-open prairie farmlands, sandy dunes, a shallow lake-like slough system, and a lush valley that the North Saskatchewan River flowed through. We could disappear all day with the other kids in the neighborhood. We would build elaborate tree forts, play war games, climb trees, and ride our bicycles down the endless dirt roads. We would spend days upon days constructing entire cities for our toy dinky-cars in the sandbank ditches of the road that passed by our property. Or we would fashion crude wooden weapons and go to battle against each other in the never-ending bush. We would build our own treehouses, and go-carts, and ramps to jump our bicycles off. A jar of nails and a hammer could keep us busy for weeks. Or even just a simple shovel. Sometimes we would go out in the bush and dig holes – massive holes – the kind you would have a hard time getting back out of – just because we could.