Tuesday, April 21, 2015
This Blog has Changed Locations
If you are here to see new blog posts by Dennis Maione, I have good news and bad. The bad news is that you cannot get them here anymore. And, you are going to need a new link.
The good news is that my new blog brings together all my blogs into one place and under an eponymous header. So, to get to my blogs (from now on): dennismaione.com/blog
See you there!
Tuesday, April 7, 2015
Standing in the Shadows
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.
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
Monday, March 2, 2015
Colon Cancer Awareness Month
March is Colon Cancer Awareness month. What does it take to show that you are aware? Could it be as simple as saying, "I assert that colon cancer exists as a disease"?
That is not what proper awareness means. What I want from you is not simply your assent, but your engagement. For some, engagement is easy, perhaps too easy. This year, in the USA and Canada, it is estimated that 146,000 will be diagnosed with colon, rectal, or anal cancer. That means just over 12,000 people will be diagnosed with colon, rectal, or anal cancer during the month of March alone. Now that is engagement, but not the kind I'm hoping for.
Take note that these figures do not include all the people who are already living with colorectal cancer and its effects: those who are in active treatment (radiation and chemotherapy); those who suffer from the long-term effects of surgery and treatments; and those who, like me, are living with genes that predispose their bodies to cancers like colorectal tumors.
Nor do those numbers take into account all the people who live with people who live with colorectal cancer. The thousands of friends, families, and medical caregivers who actively support those people who are struggling through, and triumphing over, colorectal cancer.
There are a lot of people who, by virtue of being singled out by colorectal cancer, are certainly engaged--not only during the month of March, but in all the other months as well.
So why these awareness months? Are we not already aware? Between the patients and the families and the friends and the medical professionals, you'd think virtually all of us are aware of colorectal cancer.
But, really, we are not. Cancer of all kinds is one of those things that needs to be actively brought to the attention of people. And, no, I am not talking about big expensive campaigns that spend almost as much money as they raise in donations. What I am talking about is people engaging with people. People engaging with their own bodies. And, frankly, people engaging with their wallets as they consider what health and research is worth. Awareness is people engaging with the ravages of a disease which, in many cases, can be prevented or reduced in frequency by changes in lifestyle. Exercising daily and changing from a sedentary to an active lifestyle can lower the risk of colorectal cancer by 30% or more in the average person.
But awareness is also the continued recognition of the cost of disease and of the reality of our mortality. It brings us face to face with the brevity of life.
In my talks around the content of my book, What I Learned from Cancer, I speak about the three most important things that I learned from my journey through cancer, a journey that has been more than 20 years in the making and continues for me from day to day. These are the things that, for me, are the most important part of being aware. To be truly aware is to open our eyes to the things in life that are important. Being aware is to step into the light and embrace the lives that we have been given. Being aware is to live in full knowledge that the cure, however that is defined, is ultimately not the most important thing.
I learned three things in my journey through and with cancer. I learned, first, that I am not my disease, and I will actively resist anyone who would treat me as though I am. I am not my disease means that whatever my disease, my ailment, or my crisis is, I can and should be treated as the person I am rather than a problem to be fixed.
I learned, second, that my community is the most important resource I have. My community--the people around me who are my friends, my family, my co-workers--these are the ones from whom I draw strength when my strength fails. The ones whose comfort I take and whose arms I rest in when I am weary. The ones whom I should never push away in either the highs or lows of my life.
And finally, I learned that my wholeness is far more important than my health. All of us, each one, is afflicted with a condition that we share with all of humanity. We are mortal. And while colorectal cancer takes some of us sooner than we would like, in the end we all must go. We make a mark on the world, and then we leave behind the legacy we have created. We leave behind the effects of our accomplishments; we leave behind friends and family. We all leave something behind. And with that knowledge we can begin to quest after those things which are most important: lives of integrity and meaning.
I am aware of colorectal cancer, for I have had it removed from my body twice. I am aware of what it has taken from me. I am aware of the emotional and physical toll that it has exacted on my friends, my family, and me. But in my awareness of cancer, I am drawn to a more profound awareness, one that I am only just learning to embrace and understand: there are so many things that cancer cannot take from me. And it is those things that drive me to be the best person I can be, despite what cancer would try to take.