Dennis Maione
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Tripod

21/4/2015

3 Comments

 
[This is part 2 of a two-part post. Here is part 1: Ten Words ]

“There must be more than three! What about a Top 10 list—you know, like David Letterman? How can there only be three lessons you learned from cancer?”

OK: like David Letterman, I too can create a Top 10 list of the things I learned from cancer. The first few delivered with a flourish, a drum roll, and a “ba-dum-bum” after each delivery. Here we go [cue drum roll]:

10)  If there’s blood in the toilet after you go to the bathroom, don't ignore it. See a doctor.

9) When prepping for a colonoscopy, remember that jell-o is considered a clear fluid, and that hot jell-o is better (and faster) than cold.

8) Before accepting assurances that it is “not really that bad,” ask your surgeon if HE or SHE has ever had a colonoscopy.

7) Beware of smiling radiation technologists with bags of barium solution.

6) While in the hospital, advise your visitors to refrain from bringing reptiles as gifts.

5) When recovering from surgery, beware of uproariously comical things and their hazardous effects on abdominal staples.

4) When entering hospital, pick out pyjamas before you’re admitted, or you’re going to be stuck with whatever your wife buys you.

Considering that each of these reflects an actual moment in my cancer journey, these points are not entirely irrelevant. However, it is in the remaining three points that the crux of my experience lies. These three lessons were foundational to my negotiating a healthy response to critical illness and to the underlying genetic syndrome that caused my disease. And they are, in my opinion, foundational to surviving critical and chronic circumstances in life. These three deserve a more thorough treatment than a mere enumerated statements can give.

First: I am not my disease. This tenet seems to strike a chord with all the friends I’ve spoken to who’ve also experienced critical or chronic illness—cancer, multiple sclerosis, Parkinson’s disease, and a host of other maladies. The same idea reverberates in conversations with those who’ve suffered critical life events such as divorce, job loss, drug use, or incarceration. The take-away is this: I am not the worst thing that has ever happened to me. Nor am I the worst thing I’ve ever done, for that matter, or even the best. I am these things, but no single event defines me.

Throughout the course of my cancer journey, I met many people who were tasked with helping me. The ones who did help—the heroes in my life—were the ones who approached me as a whole person: a person with hopes, dreams, and aspirations, with a life to live in the midst of disease and beyond. The villains were the ones who saw me as the personification of my disease: a problem to be fixed, one more job to be done. I learned from cancer that I have the right to caregivers who devise treatment plans and provide support based on who I am rather than simply on the ailment I have.

Second: in times of crisis, I need to embrace the community that is around me. As a male, I have a tendency to pull away from people when I have needs or hurts or when I experience failures. No doubt there are factors of personal temperament which contribute to that disposition; however, the fact that people usually nod and look knowingly at me when I say this suggests a commonality of experience. At any rate, I am one who is hesitant to say, “I am afraid”  or “I need help” or “I have no idea what to do next.”

That isolating factor is compounded by the fact that, when people encounter others with diseases like cancer, they tend to pull away. Not because they do not care or do not want to be helpful, but because they genuinely do not know what to do or say to someone who was fine yesterday, but today has cancer.

Nonetheless, I believe community is the single greatest resource that we have when dealing with cancer. And I can say with confidence that no one—not you, not me, not even Superman in his Fortress of Solitude—is better off alone in the midst of uncertainty and despair, pain and struggle, than in a community of those who love and support them. Of course, support means different things to different people, and the introverts among us may shudder at the prospect of constant or intrusive interaction, but I am not referring to always being with people; rather I am referring to there always being someone available for us. I learned from cancer that when I am at the end of my rope, when I lack the strength to go on, I need community to hold me up through my dark times.

Lastly, I need to embrace the fact that personal wholeness is more important than physical health. This I learned not only from my personal experience, but through watching a good friend die of pancreatic cancer. In the eight months between when he was diagnosed and when he died, I saw cancer take everything physical from him: his body and his mind. But through it all, there was something that the ravages of cancer could never touch: who he had become as a person, who he was as a husband, a father, a son, a brother, and a friend. I ached as I watched him die, but I marveled at how his personhood—the man he’d become through all the moments of his life, the healthy years and life-and-death struggle alike—was something that could never be taken from him.

I know that wholeness is an idea that means many things to many people. For some, it is a sense of personal integrity; for others it is being in right relationship with other people. For those who are religious, it is reconciliation with God. It is not my place here to tell you where truth lies, although I believe that it can be found if you look for it. What I will say is that we all have a length to our days, and when those days are up and we face our end, all we have left is who we have become. And it is in that “becoming” that we can find our wholeness.

I have learned a lot from cancer, and I’m sure it still has a lot to teach me. But these three lessons have become foundational to my life.
Resist labels. Embrace community. Pursue wholeness.

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Dennis Maione is an author, speaker, and teacher from Winnipeg, Manitoba, Canada. He has been on a 20+ year journey through 2 bouts with colorectal cancer, in large part due to the presence of a Lynch Syndrome mutation in his genes. He speaks and writes about his cancer journey, his insights into the medical system, and finding heroes and villains in the unlikeliest of places.

His latest book, What I Learned from Cancer, is available in electronic form at his payhip.com site: http://bit.ly/wilfc-ebook. Physical copies of the book are available at the Prompters to Life web store, where shipping on copies of the soft cover edition is always free (except to the international space station). To order a paper copy of the book visit: http://prompterstolife.com/shoppers
3 Comments

10 words

20/4/2015

2 Comments

 
An Encounter

I had been sitting there for an hour, maybe a bit longer. It was the first time I had ever done a book signing, and I was not really prepared for the people—or lack of people—I would encounter. Every time someone would near my table, I’d look up and smile; they’d see the book—some of them even mouthing the title to themselves— and then most would avert their eyes and walk away.

She was different. She picked up my book, looked at the title, and turned the volume over to read the blurbs about the content and author printed on the back. Then she put the book down, looked at me, and said, “So, what did you learn from cancer? Tell me in 10 words.” I was taken aback, suddenly feeling transported back to teenaged years, as though I were being interrogated by my parents after having come home too late on a school night. I looked back at her, squinted a bit, and peered into the air, at a spot just above and to the right of her head. The place I always looked for the answer to a question I had no idea how to respond to.

I paused just long enough to make her impatient. “Well?”

“Wait! Wait! I’m thinking. You gave me only 10 words: I have to make the most of them!” We both laughed.

I don’t remember the rest of the encounter. I cannot recall what I answered, nor do I even remember if she bought the book. What I do remember is the consequence: I spent the rest of my time there puzzling over the answer to her question. “What had I learned from cancer?” I asked myself over and over again.

You’d think that responding to that question would be pretty straightforward. After all, I had just written a book by that title. However, my writing process had evolved differently: it had never been that didactic, as if I'd been answering an exam question. Instead, I had formed a title and then moved on to craft the narrative of my experience. I figured I must have learned something from my intense encounters with cancer, and I figured that something must be buried in my story somewhere. So, if I told the story well, I reasoned, any reader would end up learning the same things I had learned. Oddly enough, I had never once wondered, “What happens if someone asks me what I learned?” With that woman’s startling question to me, I realized I needed to discover the answer.

While I have never been a sales professional, I have taken a number of sales courses. One of the lessons stuck particularly well: always have an elevator speech ready. That’s the succinct presentation you can give to someone whilst moving from one floor to another in an elevator. You make it clear,  impactful, and under a minute long. What had I learned from cancer?

The probing question first asked that day has since produced the core of everything I say about my experience of cancer. Every time I am asked to speak, regardless of the context, I hone in on the same key points. Whether engaged in an informal chat, preaching at a church, giving a workshop, presenting a keynote address, or doing a media interview, it is always these three points that are at the heart of my message.

So what did I learn from cancer?

First, I am not my disease and I will resist those who would treat me as though I am.

Second, community is more powerful than isolation and needs both to be fostered and held on to during times of crisis.

Finally, wholeness of person is more important than physical health and needs to be given the most prominent place of anything you can strive for in life.

While there are certainly other important things that I learned from cancer, these three lessons distill the essence of my experience and comprise the core of what I believe about all life circumstances, particularly those times of crisis in our lives. As a result, I share them whenever I can.

Epilogue

A couple of months after my initial encounter with a book browser anxious to have me tell her what I learned from cancer, I sat at another book store. By then I had long formed and held the key lessons learned firmly in my mind, and I had  had seemingly countless occasions to speak them out. Nevertheless, the inquisitor’s challenge remained: could I answer her question in ten words? And so, pulling out a pen and piece of paper, I began to write down my ideas. It took a bit of time, but I eventually got my message captured in not just ten words, but six.

Resist labels. Embrace community. Pursue wholeness.

[This is part 1 of a two-part post. Here is part 2: Tripod]
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Dennis Maione is an author, speaker, and teacher from Winnipeg, Manitoba, Canada. He has been on a 20+ year journey through 2 bouts with colo-rectal cancer, in large part due to the presence of a Lynch Syndrome mutation in his genes. He speaks and writes about his cancer journey, his insights into the medical system, and finding heroes and villains in the unlikeliest of places.

His latest book, What I Learned from Cancer, is available in electronic form at his payhip.com site: http://bit.ly/wilfc-ebook. Physical copies of the book are available at the Prompters to Life web store, where shipping on copies of the soft cover edition is always free (except to the international space station). To order a paper copy of the book visit: http://prompterstolife.com/shoppers
2 Comments

Standing in the Shadows

19/4/2015

0 Comments

 
“Where are the nurses?” was the question that came from the back of the room after I finished my talk. It was the end of the first launch of my book What I Learned from Cancer and after telling stories and reading selected passages from my book, I asked the audience for questions.

I was unprepared for that question and so it caused me pause. And it got me thinking about the other heroes in my story, the unseen heroes.

When I advertise talks about my cancer journey I speak of “heroes and villains in the unlikeliest of places.” And most, but not all, of the heroes are doctors. Understandably, the doctor looms large in any medical story. There they stand in the centre of things, high on a pedestal from where they can see everything and from where everyone can see them: a lot like the statue of Jesus overlooking Rio de Janeiro, they survey the territory of patient health. I think that view of doctors is what gets them, and us, in so much trouble. It can foster an arrogant “I know what is best” attitude and, when medical or relational decisions turn out poorly, it can also create a great place for the rest of us to see their failure.

And so, having finished telling my story she raised her hand and from the back of the room asked about the people who must have been there but went unmentioned in my narrative: “Where are the nurses in your story?”

Nurses are like sound men at rock concerts: there they are to ensure that all goes smoothly, there they are to ensure that the “stars” get their message out, there they are making the performers look good. But you never see them and despite being indispensable they go largely unnoticed. It is not until the feedback begins or the vocals are not loud enough or the guitar solo makes your ears bleed that you look back into the shadows and ask “What is that guy doing back there?”

But when I was in pain in the middle of the night, it was not a doctor who came to my side. When I vomited black bile all over myself and my bedding, it was not a doctor who came to clean me up. And when I lay in my own waste, on more than one occasion, because I could not get to the toilet in time, once again, it was not a doctor who cleaned me up. It was a nurse who, without a word of complaint, changed my bedding, wiped my back side, and put me into my bed, only to be called to return 10 minutes later to repeat the process again.

They took my vital signs, gave me drugs, changed my IV, calmed my nerves, heard me cry (in despair and pain), and came running whenever I pressed that magic button beside my bed. They encouraged me in the middle of the night, and pushed me just hard enough to know that I really could do that thing I needed to do to speed my recovery. These were my nurses.

I know nurses. I’d love to be able to describe them stereotypically as the angels who come to your bedside. But I can’t, mostly because at least half of the nurses I know are guys, and none of them are angels. And I am not sure that the metaphor of the angel fits. Instead, I see them as servants. And, lest you get the wrong impression, I am not talking about slaves, I am talking about those who choose a life of helping, who choose to place others before themselves, who choose to be the ones to whom very little credit is given. These are the ones who, in their humility, make our medical system function.

To all the nurses I know, to all who have served me though my illnesses, to all who appear out of the shadows and disappear into those same shadows when the healing is done, I offer my thanks. And know that we, your patients, appreciate you and what you do far more profoundly and deeply than we can ever express.
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Dennis Maione is an author, speaker, and teacher from Winnipeg, Manitoba, Canada. He has been on a 20+ year journey through 2 bouts with colo-rectal cancer, in large part due to the presence of a Lynch Syndrome mutation in his genes. He speaks and writes about his cancer journey, his insights into the medical system, and finding heroes and villains in the unlikeliest of places.

His latest book, What I Learned from Cancer, is available in electronic form at his payhip.com site: http://bit.ly/wilfc-ebook. Physical copies of the book are available at the Prompters to Life web store, where shipping on copies of the soft cover edition is always free (except to the international space station). To order a paper copy of the book visit: http://prompterstolife.com/shoppers

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Kintsugi

18/4/2015

1 Comment

 
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When I was in high school, my father gave me his 1969 VW Beetle. Despite its age and the toll that time had taken, it was a great car. I especially loved it for its simplicity. Throughout my relationship with it, I rebuilt the engine twice, both times stripping it down to washers and bolts and then putting it back together, good as new, some of the parts cleaned up, some refurbished, and others discarded and replaced with brand new parts. Each time I put the engine together again, you’d never have guessed that a week earlier its parts had been strewn about my driveway in a disarray no one would have recognized as a car engine.

My body, however, is different. It wasn't designed to be taken apart, and there really are no parts that you can simply take out and replace—not “as good as new,” anyway. Each time I’ve been taken apart and laid out on an operating table with my bolts and washers all over the place, my surgeon cleaned me up, took out the broken bits, and then did his best to put me together again, as good as new. But each time, the process was more complex than with my Beetle. Each time, there were consequences to the action, and I was never again the same. Despite the skill of my surgeon, there were scars.

Scars: some were visible, like the permanent zipper on my abdomen, spoiling the potential for the perfect abs I’d always dreamed I’d develop some day. Other scars were deeper inside, scar tissue that invaded my body at its core. And, of course, there were psychological scars, which came from the trauma of the incident, the long shadow of death, and the realization that something had been taken from me which I’d never get back. Some of those emotional scars are still present, although not really evident until poked at by a mind trying to remember.

I recall sitting in a Starbucks as I put the finishing touches on my book, What I Learned from Cancer, sifting through medical records and remembering. I did a brief calculation about the spans of time in my cancer treatment and recovery, and I wrote this:

It had been 15 years, 3 months, and 14 days since cancer had been removed from my body. 5,584 days since my abdomen had been violated by the cut of a scalpel searching for the villain amidst the blood. And on that day, the sign reading, “5,584 days cancer-free,” came down and was replaced with one reading, “This body is out of order, again.”

And what was remarkable about the writing was that, 7 years after the incident it described, it drew tears. I sat at my table in the corner of Starbucks for half an hour, and I cried. I cried because that scar—the one I had not even known was there—hurt when I moved a certain way, and because, for a while, that pain would not subside.

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The Japanese have an art form called kintsugi, a word which literally means “golden joinery,” and a technique which, for centuries, has been used to repair broken ceramics. Like the human body, pottery cannot be put together “as good as new” once it has been broken; the cracks will always remain. But in kintsugi, gold is mixed with the bonding material, creating a glue which not only repairs the piece back to its original function but also celebrates the repair.

My body will never again be “as good as new.” Cancer and surgery have made sure of that. But I have begun to celebrate my repair. I can look at my scars and celebrate my recovery from crisis as well as all that the journey has made and will continue to make of me. I can show off my golden joinery and believe that somewhere in the breaking, I have become something even better than new. 

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In celebration of Colon Cancer Awareness month, I am offering promotional pricing on my book, What I Learned from Cancer.  To buy an electronic copy of the book for $2.99, visit http://bit.ly/wilfc-ebook. Physical copies of the book are available at the Prompters to Life web store, where I am waiving shipping charges. To purchase the hard or soft cover edition, please visit: http://prompterstolife.com/shoppers. Soft cover ships free anywhere in the universe/
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