Fighting Cancer and Finding My Voice

Jamil Jivani
Apr 3, 2018 · 7 min read
The neck brace I need to wear in order to prevent further damage to my spine.

I’ve spent the last two years writing the story of my life and that of other young men I’ve known along the way, for a book called Why Young Men. After all of that work, I thought I knew myself as well as a 30-year-old can know himself. But I learned that there is at least one big thing I didn’t know. Something I wish I had figured out sooner. I have cancer.

Learning something new

On Family Day 2018 (a public holiday in Ontario), I went to the emergency room at North York General Hospital. I thought I was going in to have a routine problem dealt with and maybe leave with some antibiotics prescribed to me. I expected to be in and out within hours. No big deal.

After checking me out and reviewing some tests, a doctor sat me down. “I’m sorry,” she said with concern in her eyes. “I think you have lymphoma.” When asked how I could get so sick at my age, the doctor replied with tears in her eyes. “It’s just bad luck.”

I later learned that non-Hodgkin’s lymphoma has grown into my bones, causing fractures in my neck and back, damaging my spine. It is considered stage IV.

I called my girlfriend, Christie, to tell her what was going on. She says she knew something was wrong when all I could utter was “um” before a long pause. I’m not used to being at a loss for words, or needing to use “um” to buy myself some time. Words usually come easily to me. I might not always choose the right ones, but I almost always have something to say. Christie knows that better than anybody.

As if I lost my voice, I didn’t know how to tell her the bad news. I felt like I’d been sucker punched, and I knew hearing the word “cancer” would hit Christie just as hard. The best I could muster was “um” before being overwhelmed with emotion. I gave the phone over to my dear mom and asked her to break the news to Christie for me. Per usual, mom was strong enough to do so.

I stayed at the hospital for four days to undergo testing. For the first two days, there were no hospital beds available (unsurprising in Ontario’s health care system). I was given the choice to lie down on a stretcher in a crowded hallway full of people or sit in the “green zone” waiting area. Lying down in the crowded hallway wasn’t appealing. The older men already there looked uncomfortable, as if they were denied dignity when put on public display like that. I chose to call the green zone home and tried to fall asleep in a small room where x-ray machines are stored at night.

Eventually, I was moved to a hospital bed. I could sleep, finally. It was quiet. The bright lights of the emergency room were gone. I listened to music to pass the time.

I cried when Bone Thugs’ “Tha Crossroads” and Tim McGraw’s “Live Like You Were Dying” came up on my playlist.

I reminisced about simpler times when hearing songs from my childhood, such as Michael Jackson’s “Black or White” and Wu-Tang’s “Triumph”.

I felt anxious when Lukas Graham’s “7 Years” and Lauryn Hill’s “To Zion” played. Those songs make me look forward to the future, and having my own family.

Music was a nice distraction when I needed one, but little more than that. I needed more to cope with the news that my life might end much earlier than I expected. I needed hope.

In late March, I recorded a message to my friends after undergoing radiation and chemotherapy treatments.

Finding hope

Four days after being told the life-changing news, I went home to await biopsy results for the longest two weeks of my life. A friend shared a book with me, The Anatomy of Hope by Dr. Jerome Groopman. In it I found a definition of hope that was helpful.

“Hope is the elevating feeling we experience when we see — in the mind’s eye — a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.”

Most good things in my life have come from being able to see a path to a better future, even when there was little good reason to do so. Since being told I was sick, I couldn’t see a better future on the horizon. My vision was clouded by the knowledge that I was seriously ill. It was hard to see a better future beyond the radiation and chemotherapy that awaited me.

I did, at some point, need to return back to the rest of the world, though. To turn my phone on, check my emails, post on Facebook and, most importantly, see my friends. But, I was scared of finding myself without words again, overwhelmed by emotion like I was when calling Christie from the emergency room. I thought people would see me as weak. Not just physically weak, but also mentally and emotionally weak, if I couldn’t speak with the confidence and optimism that people who know me would expect.

On the Sunday after I was released from the hospital, I attended church at Kingdom House in Brampton, about a ten minute drive away from where I went to primary and middle school. At Kingdom House, I was embraced by community leaders. “You have a purpose here that hasn’t been fulfilled yet”, one of the church elders said encouragingly. Another member of the church told me as we hugged, “This is just a chapter in your next book. You have more life to live.”

Hope, for the first time since being diagnosed, felt less elusive.

After church, my sisters and I then went over to the old neighborhood we grew up in and walked around. Many things had changed since we last lived there more than 12 years ago. Seeing all of the changes in the neighborhood, I felt happy that I had written about my life and some of the other young men who grew up with me. Our history might have been lost with the rapid urbanization of Brampton, the increases in property value and the high turnover in families that call the area home. But, writers like me are able to document what we saw, felt and heard as we tried to find an identity for ourselves. Our generation of Canadians would be better known and, hopefully, better understood, even if the environment that shaped us was no longer recognizable.

With this in mind, a path to a better future started to become visible. The better future I started to see is one in which the time I’ve spent on the earth thus far could have an impact that outlives me. My story, and its potential value to others, could have a future far brighter than my own. The path for me, then, was to finish what I started two years ago and get my story out to the world.

The cover of the Canadian edition of my book, “Why Young Men.”

Absurdity

Learning to be a writer over the last couple of years was the culmination of a decade of me breaking from a past of parroting others’ ideas. For a large part of my life, I had a very hard time thinking for myself. I was mostly a vessel for the conclusions other people made. Hollywood, hip-hop, online conspiracy theories, racial nationalists and divisive political movements dominated my thinking. Others’ ideas had a hold on me in part because I was convinced that embracing them was a way to be real or authentic as a man and a black person. I allowed people to dictate to me what I should think and feel because of authority they claimed over my identity.

Identity politics at the mainstream and at the extreme fringes of our society encourage young people to stifle their own voices in the ways I learned to. By placing group identity at the forefront of politics and culture, even the most well-intentioned use of identity politics often promotes a linked fate view of the world. Linked fate refers to the sentiment that an individual’s success is tied to the success of her or his race. This obfuscation of individual success and group success can also apply to other identity markers, like gender. A linked fate view of the world makes individual thoughts and feelings subordinate to a broader group agenda, which is often set by the loudest people claiming the authority to speak on behalf of an entire identity group without democratic checks and balances.

In learning to be a writer, I’ve had to find my own voice and cut through identity politics. I’ve had to get used to thinking I have an individual story that’s worth telling, however incomplete. I’ve also had to get used to the possibility that share my experiences can help others be better understood.

When you think you have all the time in the world, it’s less costly to waste time parroting others’ ideas or stifling your own individual voice. As I was abruptly reminded a few weeks ago, though, none of us have all of the time in the world. I’m thankful to have had the opportunity to tell my own story, in my own words. At minimum, I hope my experience might encourage other young people to do the same. Don’t waste a single minute while you’re here being anything but yourself.

Written by

Author of “Why Young Men: Rage, Race and the Crisis of Identity.” Cancer fighter. @jamiljivani

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