February 26th represents a very special date in my life. I call it my day of "re-birth". It's the date six years ago that I sat in the office of my Oncologist in Miami and heard the words, "Your cancer appears to be in remission." After 5 brutal months of enduring chemotherapy, with enough toxins inside me to kill most people, I was given a second shot at life. Not many people are lucky enough to be able to tell that story, but I am.
Before you write this letter off as just another missive designed to denigrate or dismiss you as evil people who are obsessed with your guns, or someone claiming you have blood on your hands, allow me to stop that train of though in its tracks and explain why I'm writing this open letter to you. This is an attempt to have an open dialog instead of devolving into the all too familiar shouting match we usually have about gun control and gun violence. First, let me give you a little background about myself so you have an idea of where I'm coming from.
The most common question I get from people who don't know me is, "Nice ink. Who did your work?" That question refers to the colorful tattoos that adorn my body from shoulders to ankle, in full "sleeves" and "socks" on both sides. Most of the time people ask me this question for one of two reasons: (a) they're also heavily covered in tattoo art and seriously want to know who the artist is, or (b) they secretly want a good tattoo themselves, but have been too scared to get one, so they are curious.
Seeing the look of surprise and joy on this young man's face, and being able to be in the presence of his happiness, after seeing all that he has endured the past few years, was the best gift I could receive and the best part of my vacation. The old saying that "it is better to give than to receive" is absolutely true.
This weekend was one of enjoyment for most of us, including myself, as we celebrated one of the most important people in our lives, our mothers. Mothers Day is one of my favorite holidays because of the special bond that I have with my own mom. She gave me life, she's been my rock of support, my biggest fan, and she was there for me during my darkest time as I fought against cancer.
Cancer survivors all tend to remember the day they found out they were free of the disease that threatened to take their life. If you are lucky enough to stay in remission from this beast you may even mark that occasion with a celebration. How Survivors choose to remember that day is different for every individual. Some celebrate the day with a fantastic party, similar to a birthday or wedding anniversary. Others do something spectacular on that day they have never tried before. Some just treat it like any other day because it's their way of telling cancer it was never anything special and therefore doesn't deserve the recognition. I tend to do things my own way to remember Friday, February 26, 2010.
I've been thinking a lot about language and culture lately as it relates to cancer patients, survivors, and those who have been taken from us by this disease. As I approach the big five year mark of my remission date on the 26th of this month, I realize how much I hate the use of what I call "war language" when talking about cancer.
Every year since I was officially declared to be cancer free, or NED as we call it (No Evidence of Disease), I have tried to find ways to pay it forward through random acts of kindness. I am so grateful to still be here and I had so many random strangers help me through the past 5 years that it only seemed fitting to keep paying it forward to others when I see the opportunity to do so. Call it an investment in karma, positive energy, good "juju" or whatever you want, I just like to see people smile.
If you already know me you know that I'm a bonafide music addict. I've had an interest – no an obsession – with music since early childhood. I was the stereotypical band nerd in middle and high school, playing a handful of different brass instruments in concert, marching, and jazz band. Band class is where I really learned to understand and appreciate different forms and genres of music. I can thank an incredible band teacher of seven years, and friend for 30, for giving me insight into bands and artists I'd never heard of before like Cream, Led Zeppelin, Howlin' Wolf, Buddy Guy, and Stevie Ray Vaughn.
Some days I wonder to myself if social media is really a force for good or if it deteriorates our level of human compassion. On the one hand I see amazing things happen every day in the digital world that give me hope to believe people really do have compassion. As the administrator of a handful of childhood cancer related pages, including one for a non-profit that I am a part of, I see acts of compassion every day from complete strangers who are moved by the suffering of children. I also am fully engaged with a tight-knit community of parents, kids affected by cancer, their relatives, friends, and advocates who all come together to support each other. That can be a beautiful thing to witness and it gives me much hope. I've seen and been a part of several online friendships that turned into "in real life" friendships because of that common connection and a desire to ease another's suffering.
"How did you find your calling Joe? You should tell the story of your journey." That was a question and suggestion from a friend of mine just a few weeks ago. I really had to think long and hard about how to tell my story because it's not your typical "I found my calling" story (at least not from any sort of religious calling). You see, I didn't really find my calling as much as it found me, and in a way I wouldn't have ever expected it to. To understand what I mean let me take you back to a time and place years ago in my past.
Unless you have been living under a rock the past week, you probably heard the story of Brittany Maynard, the 29 year-old woman who moved to Oregon so that she could exercise her rights under state law to end her life at the date of her choosing. Like everyone else, I have my own thoughts on this story. They are obviously shaped by my own experiences as a cancer survivor and as someone who has confronted their own mortality at a very young age.
November is a weird time of the year for me since the year 2009. I lived both a nightmare and a miracle that year, all within a span of the same month. Today a song I had not heard in a while triggered some of those memories and made me appreciate the amazing things that have happened since. Let me take you back 5 years ago to a much different time and place to explain why it is such a vivid memory and why it changed my outlook on life forever.
Every day I logon to Facebook and browse through my newsfeed. I see a variety of things, some good, some bad, many things inspirational and then others that are just downright heartbreaking. One trend that I see of late sometimes makes me lose faith in. I call it the demonization of the poor.
In April of 2011 I had just passed my one year anniversary from being declared in remission from Stage 3 Non-Hodgkin’s Lymphoma. As a new cancer Survivor one thing that kept calling me was the desire to help other cancer patients who were in treatment. I think it’s a common feeling that cancer Survivors have — the ability to empathize and the need to help others who are now in your shoes. That feeling became even more apparent to me that April.