By Roger Stokes, HoneyColony Original
I was 4 years old when I asked my dad if I would die. I wasn’t talking about the future. I wanted to know if I was about to die right then.
With a barely perceptible hesitation, my dad said he didn’t think so.
How would you answer that question if asked by your own child? What if, deep down, you secretly feared the worst? Would you lie, or tell the truth? I would lie to my child. There’s no way I would tell her she was going to die. Because I would want her to believe in her ability to fight. Her ability to win.
Needless to say, I didn’t die when I was 4. But I came close. At my worst, my lung collapsed and I spent a brief period of time on life support. All told, I spent three months in Children’s Hospital of St. Paul, Minnesota, in the spring of 1978. What began as a routine, exploratory laparotomy to investigate whether or not the cancer had returned soon became an experience far more terrible and closer to death than my doctors, my parents, or I could have anticipated.
That made me angry. Angry enough to fight, and angry enough to win.
Cancer Strikes Early And Hard
When I was just 18 months old, I was diagnosed with cancer. I had rhabdomyosarcoma, a rare, soft tissue cancer with a miniscule survival rate. This was 1975, and medical technology — diagnostic equipment and cancer treatments — were primitive compared to today.
The day began with me having a crying fit that would not stop. My mother could not figure out why. But in addition to the screaming, I hadn’t peed all day either, so something was clearly amiss. That evening, my parents took me to our local, small-town emergency room. They suspected an obstruction of some sort and sent us to Children’s Hospital of St. Paul for further diagnosis.
There at Children’s Hospital, my cancer was soon confirmed. Within my little 18-month-old frame, a very large tumor had engulfed significant portions of my lower abdomen. Removing the tumor required numerous surgeries over a very brief period of time. I had several major organs either resected or removed entirely. I lost my bladder, prostate, rectum, and about half of my small intestine.
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Run those organs through your head very quickly and you’ll soon realize the implications. For the past 38 years, from infancy onward, I have been saddled with both a colostomy bag and a urostomy bag. I could write volumes about the challenges of growing up with not one, but two, ostomy bags. One day soon, I may do just that. But for now, I’ll narrow my focus to a three-month episode in the spring of 1978, when I was 4.
Radio Flyers And Old Wounds
I have absolutely no recollection of my earliest surgeries — the ones right after my diagnosis — or of the awful radiation treatments and chemotherapy that followed. I was simply too young to form and retain those permanent memories. My parents, of course, remember those harrowing days all too well, but we don’t generally talk about it. Why open up old wounds?
But I do remember with vivid and remarkable clarity the Radio Flyer wagons I rode in when I was 4 and all that they came to represent. They would wheel me off into surgery in those wagons — which they used instead of gurneys for the smallest patients — and despite this well-intentioned attempt at soothing fear and boosting cheer, I would be terrified and sad, clinging desperately to my mom as the wagon pulled me away from her. While riding in the wagon, I always had a little plastic firefighter’s helmet placed atop my head. I wound up with quite a collection of those helmets. And still it was scary. Still, it was very, very scary.
Those operating rooms were a child’s worst nightmare. All of the instruments and machines were shiny, sharp, and frightening. Everything was loud. Throngs of nurses and doctors milled around in their O.R. blues and sterile masks. They reminded me of movie villains. And once I was placed prone upon the operating table, staring straight up at those big, bright lights. Well, it was a helpless feeling the likes of which even now, more than 30 years later, I have never since experienced.
To this day, I can’t tolerate the smell of alcohol, the alcohol with which they rubbed my skin. That and the brown, sterilizing soap called Betadine, which was omnipresent in my youth. Back then, anesthesia was still administered with a mask, rather than with today’s intravenous method. That hateful black, rubbery mask would hover over my face like a monster, like a facehugger from Alien. It smelled putrid, a combination of the rubber itself and the noxious gasses that would put me to sleep.
In those few seconds before everything went black, all of the sounds in the room became amplified to ear-piercing levels. It is an effect of the anesthesia. As I slipped away, every sound in the room would rush at me as if I was trapped in some horrible wind tunnel. The noises whirl around and slam into you, and then you are out.
I used to wake up in the recovery room scared and shivering, but never too disoriented to not know what was happening. I would hear the beep beep beep of the heart monitor. Not that I needed any auditory clues that I was still alive, for, in spite of the medicines, I was in excruciating pain. I felt like — well, like someone had sliced into my abdomen, which, of course, they had.
The stitches also itched like crazy, and no matter how uncomfortable it was, they could not be scratched. No relief would be had until the stitches were eventually removed. How strange it was, too, to have stitches removed. The intensity of that feeling — having a thread snaked back out of your skin — was matched only by the youthful curiosity of actually watching it. Since as early as I can remember, as a 4-year-old kid, I have watched every medical procedure carried out on me while awake. I have never flinched nor looked away as needles, no matter their length, were poked into me. I have watched as IVs were started or cameras were snaked up my stoma. I have seen the doctor’s gloved hands go right into open wounds in my belly. Those sights never bothered me much. They’ve stayed with me, yes, but I never looked away.
That exploratory surgery I had when I was 4, to make sure the cancer hadn’t returned in the three years since I had been diagnosed, was supposed to be routine. But instead, complications arose. I had to undergo four additional surgeries of about eight hours apiece in a span of less than two weeks. So much general anesthesia, over such a short period of time, and in such a little kid, led to the aforementioned collapsed lung and subsequent life support. I spent three months in the hospital recovering from that ordeal. I came closer to death than ever before or since, even in the months after my first diagnosis.
The Secret To Survival
I’ve been in the hospital dozens of times since then. I’m 39 now, and I had another major surgery as recently as earlier this year. I guess you could say I’m battle-hardened. Doctors, hospitals, skilled surgeons, and medications have undeniably sustained me. And yet, there is more to my survival than medicine.
I have come to realize that the main reason I am still alive is because of me. If you want to believe in a higher power and you put stock in the power of prayer, far be it from me to stand in your way. But I firmly believe that a person facing such horrible adversities, whether they be physical, medical, or otherwise, will only endure if he or she really, really wants to. Even if you face harrowing hardships over a span of many years, even decades, as I have, you’ll get through it all only if you want to with enough force, enough ferocity, enough clarity. You must want it more than anything else, including comfort, safety, and even rest.
Survival requires stubbornness. A desire to prove the experts and the odds wrong. I was not supposed to live past the age of five, but here I am to write about it. I think the reason I survived is because I refused to die. I fiercely wanted to live, and I did.
I wish I could attribute my longevity to unwavering optimism, but the truth is, I spent those worst years fueled by anger. Damn right I was mad about what happened to me, but I never asked, “Why me?” That question, I learned very quickly, had no answer. People don’t get what they deserve. They simply get what they get.
I found useful ways to channel my anger. Anger fueled my survival skills, and I found anger to be a much more potent fuel than despair, or especially the cheerful façade that many put on for the sake of those around them. Now that I am in a positive, healthy place, and my immediate survival is not under attack, that anger has dissolved away. But if and when I need to call upon it again, I know it will be strong enough to face down whatever life throws my way.
My dad also wanted me to live. He told me I wasn’t going to die, but that wasn’t enough. That hospital room I called home for three months when I was 4 was overflowing with get-well cards and gift-shop gifts, but all the well wishes and unending faith of my parents isn’t what got me through. It was me, fighting and refusing to lose.
I hope you don’t ever have to go through what I’ve gone through, but we all face challenges of varying degrees, be it the death of a family member, the throes of addiction, or the loss of a job. When life seems its darkest, the only person that can finally show you to the light is you yourself. When faced with adversity, most people find themselves far stronger than they ever knew they could be.
I know I did.
