Facing death at 31, I learned the meaning of life

How I survived the battle for my life, and turned every day into a celebration of everyone and everything I love.

Part one in a multi-part series documenting my journey from a life-altering diagnosis to recovery and remission.

“Man in the Mirror (a Self Portrait)” Photo of the Day by Justin Schuck

Four years ago at the age of 31, I was forced to confront death. When the doctor sat me down, he looked me in the eyes, and told me that the MRI revealed a sizable mass in my brain near my hypothalamus. From that moment forward, it was if God hit the mute button on the world, leaving only the rhythmic sounds of my breath and beating heart.

As I felt my pulse quicken, the sound of my blood thumping through my head further deafened the outside world. Racing across the back of my eyes were images of my father who died just a few years before, my grandmother who died some months later, and my dear aunt Tanya. They were old, right, at least comparatively? I felt overwhelmed. I thought of the heartbreak this would bring my family. And, so began the questions.

What would I tell my family? What could I say to my friends? How will this affect my work? These, and a thousand other questions, banged around my head like the balls in a Fisher-Price Corn Popper push toy. How will I pay for all my treatment without health insurance? How will I even get insurance?! I was beginning to feel like I was dipping into madness.

I felt insane. I felt alone. I felt numb.

As the world started to come back into focus—and within earshot—I attempted to regain my composure. Apologizig for my brief mental absence, and I asked my neurologist about the next steps. He started talking about more tests, a biopsy, “brain tissue removal,” radiation, and chemotherapy. Then, suddenly, I felt it again. My heartbeat quickened, and the room went silent. I focused intently on the doctor’s mouth hoping I could read his lips. Maybe, since I was momentarily rendered deaf, I would be gifted with the skill of lip reading! I shook my arms by my side—an old trick from my days as a swimmer to loosen up, and get my blood pumping—in what I thought was an attempt to regain my composure, but instead I saw the room go dark, and I passed out right there in the chair. Thankfully, my doctor caught me, woke me up, and asked a nurse to bring me a can of Coke. Oh the healing powers of Coca-Cola.

Realizing that I wouldn’t be able to fully process all of this information, I asked the doctor for all of the relevant paperwork and brochures—for myself and my family—so I could review it at home. I scheduled an appointment for another MRI in a month later to determine the growth rate of my tumor. I was leaving in a matter of days for a two-week long trip to Guatemala, Panama, and Cuba. Plus, I needed the extra time to find some money to pay for my next round of tests.

When I arrived home to my compulsively neat apartment in Washington DC, I tossed everything on the floor—my jacket, bag, sunglasses, and the cancer reading material from the neurologist. I walked into my bedroom, face planted right on top of my duvet, and wept.

Building into a slow crescendo, the quiet returned to me. Soon, all I could hear was the labored breathing of my slow, pitiful weeping, and the sound of fluid running through my sinuses. I listened intently. I calmed myself. I breathed. I am alive, and I am breathing. I repeated this to myself in my head over and over again until I fell asleep.

I am alive, and I am breathing.

About an hour later, I awoke to crusty riverbeds on my face, remnants of the tears shed mourning my own death. As I pushed myself up from the bed, a long sinuous string of saliva stretched from my mouth down to the pool of drool on my duvet. I laughed for a moment and thought, “Well, at least I’m still as woefully unattractive of a sleeper as I’ve ever been.” I smiled.

“Feet to the floor! It’s time to get your ass up!” I heard the spectre of my father bellow from the hallway, an echo of our school day morning routine.

I sat up, took stock of my surroundings, and brought myself to my bathroom so I could wash my face. That’s when I saw him, staring at me in the mirror as intently as I stared back. For the first time in a long time, I saw myself. I saw the crusty tears, the dried drool, and the messy nose. I saw epic bed head and the puffy bags under my redenned eyes. Leaning in closer to the mirror, I straightened my arms and elongated my gaze. I saw myself. I saw the cobbled together, fragile facade of a man at the edge of emotional and physical collapse. I saw fear.

For nearly an hour I stared intently into my own eyes in search of an answer to a question I’d yet to ask. In all the schizophrenic questioning I’d done earlier, I never thought to ask myself, “Who will give my eulogy, and what will they say about me?” And that’s when I felt a change. Once again I could hear my heartbeat and my calm, steady breathing, but this time, the world wasn’t going silent. I heard in me the instrument of my thriving body as part of the symphony of the living world around me.

I am alive, and I am breathing.

There is a freedom in knowing you’re alive, in truly feeling your own life force coursing through your veins. It was as if I could feel all my nerves at once. I felt the blood pumping through my mighty heart as easily as I could feel my feet on the bathroom’s cold slate floor. I could feel life. I could feel the world, and see my place in it.

As I continued to stare deeply into my reflected eyes, I made a commitment. Like my Aunt Tanya had done in the years and months leading up to her death three years before, I too would make plans for my funeral. Or, at least I would think about the wake.

Donald N. Schuck | Photo: Stone Photography

When my father died in 2007 at the age of 60, I thought I understood the meaning of life, but God only forwarded me another hint. I gained more insight at my father’s wake, yet still no answer. Hundreds of people, some of whom I’d never met, showed up to pay their final respects to a man I thought I knew.

They shared stories of how my father had helped them, gave them their first job, how he helped pay someone’s mortgage for a year so a family wouldn’t lose their house, and how his capacity for forgiveness allowed someone to recover and return to work after falling off the wagon. Who was this man? My father didn’t know how to spell forgiveness, much less practice it. Or so I thought.

At the wake, and throughout the funeral events that week, I gained a fuller, happier picture of my father. An imperfect servant like us all, but a man of honor who deeply touched so many. I found it hard to be sad, with all the stories being told. When I took a moment to glance around the funeral home, all I saw was laughter—well, mostly laughter. Even the tears I saw were punctuated with smiles.

My father brought joy and happiness to others in his life. What carried our family though this immeasurable loss was our faith that he was watching from above, happy to see more smiles than tears. His wake was a moment of complicated joy. More hints, but no answers to the question of life’s ultimate purpose.

I learned the true meaning of life that day in my bathroom in March of 2012.

“The meaning of life is revealed in truly living out your passions and dreams.”
-Justin Schuck

Staring through my eyes and into my soul, I made a commitment to myself not to be defined by my illness, my struggle, or even my eventual death. I shall define life’s most enduring question by continuing to live on my own terms.

In order to fulfill the promise I was making to myself, I had to at least consider that death was a possibility, if not an eventuality. Accepting death with open arms is the hardest feat I’ve ever accomplished. And, I did it before anyone other than my doctors knew of my condition. (More on that later.)

Coming to terms with death

In the weeks after my diagnosis I evolved. I became more resolute in how I conducted my life. I placed an even greater emphasis on fun, friends, and new travel experiences. I made a concerted effort to treat everyone in my life with kindness and respect, including strangers I encountered every day.

If I was going to die, I would live my life for the funeral story. Nothing would bring me greater joy than being a ghost at my own funeral, watching people retell all my old stories and share their own memories. And, I’d even rejoice in hearing the frustrations of those whom I hurt. The fullness of my life cannot be explained solely by my best stories.

To accept death I had to first forgive myself for the sins and wrongs I’d committed over a lifetime. For me, that was the final — and highest — hurdle. I had to let go of all the bad things that I allowed to hold me back. So, I relinquished my mind from the slavery of negative influences. I simply looked up and ahead.

When I felt most alone, I practiced friendship. When I felt angry, I practiced humility. When I felt happy, I practiced gratitude. When I felt like death, I dreamt of all the living that remained ahead of me in life. When I slept, I felt contentment, secure in the knowledge that if I didn’t wake, I lived a life I designed, carried it out with kindness.

Me in 2012, on the waterfront in Havana, Cuba | Photo: @JustinSchuck on Instagram

The Meaning of Life

Live your life beyond what you think is your maximum potential. You are incapable of knowing the fullness of your potential. Your only job is to dream, work hard, travel, and truly experience the sights and sounds of every corner of this earth. Be nice to people. That’s it.

Any time I feel scared, or I see my life as being threatened by illness, joblessness, or hopelessness, I repeat one thing over and over: I am alive, and I am breathing.

I am alive, and I am breathing.
Mer de Glace, French Alps, Chamonix-Mont Blanc, 2013

Here’s what I want for my funeral celebration:

I want everyone to take a trip to a place they’ve never been, but always wanted to go. Don’t waste your money flying back to whatever town my body resides. I’m not there. I’m already above you, watching you, holding you, supporting you.

If there truly is life after death, then my ghost is probably farting in your face and bowling over with childish laughter. (Trust me, that’s totally going to happen. Every time you smell a seemingly anonymous foul odor, it’s me farting from heaven just to remind you that I care.)

So, pay your rent late, and go have an adventure. See the world. Bring someone special with you, be she a partner or a friend. Learn something new about yourself by making yourself deeply uncomfortable. Find comfort knowing that you’ll be perfectly fine, and even if you’re not, you’ll either have a great story to tell your friends, or you’ll die daring boldly to live fully the gift from God that is your life. We as humans often find it far too easy to remain stuck in comfortable situations, and routines. That’s boring as fuck. God never intended for you roam the cubicle farm. He gave you a planet to explore, taste, see, touch, and experience.

Find comfort knowing that you’ll be perfectly fine, and even if you’re not, you’ll either have a great story to tell your friends, or you’ll die daring boldly to live fully the gift from God that is your life.

“Tomorrow is promised to no one,” my high school Latin teacher used to say. To my teenage mind, that seemed oddly morbid, but it’s true! Never apologize for executing your life on your own terms. Today is for living. Be present. You are alive, and you are breathing.

I am a dreamer with a terminal case of wanderlust. I dream while I’m awake.

I live my dreams in ways others find astonishing. The road of my life may not be paved, it may not be clear, but I will always travel in happiness should my feet land upon this Earth.

The most important thing I told my family about my illness: When my heart ceases to beat, and my soul makes its journey to the next plane of existence, do not cry for me. I have lived. I have done nearly everything I ever dreamed of doing.

To accept death meant that I had to first forgive myself by relinquishing my mind from the slavery of negative influences.

Be happy for me. Be happy for the life I lived. With pliant knees and forgiving feet, I walk with my eyes to the heavens, worried not of the path ahead.

This story is the first in a three-part series where I cover my journey from a life-altering diagnosis to recovery and remission.

In the next story I speak about the struggle I faced in talking about my diagnosis with friends, family, and clients, and the hurdles I had to cross in order to get treatment.

If you have enjoyed my work, please visit my website JustinSchuck.com, and make sure to check out my Instagram, Flickr, and Facebook pages.