OffScrip Media is proud to announce The #BCSM Podcast, our first narrative documentary series about the birth of #BCSM, the Breast Cancer Social Media Community on Twitter.
Alicia Staley, Jody Schoger, and I first met in Phoenix, AZ, in 2010 at a young adult cancer “blogger summit” (remember those?) I remember inquisitive conversations regarding “What is this Twitter thing everyone is talking about?” Then, in 2011, they started #BCSM, and unwittingly changed the world forever.
It is the privilege of a lifetime to capture this story, memorialize our past, share it with current and future generations, and imbue the lesson that patient advocacy matters. …
You’ve heard me for years neurotically shouting into the clouds (Abe Simpson-style) about how the glamorous and enticing prospect of starting a nonprofit is riddled with unpredictable and unforeseen pitfalls and insanity.
In fact, I’ve talked many of you off the ledge but never TRULY got into the nitty-gritty writ large. Well, here you go →
To *ALL* my fellow nonprofit founders, leaders, executives, and employees, this must-listen episode is for you and anyone else living the over/under moment of “should I or shouldn’t I?”.
What’s more, I completely spill the all beans about Stupid Cancer’s ridonculous origin story and how the hell it all came together somehow. These were utterly irreplicable mid-2000s moments in time and a confluence of circumstances that collided to form the young adult cancer movement’s universe. …
You can take the guy out of advocacy but you cant take the advocacy out of the guy. Please join me in sharing in our collective success in making THE PATIENT the single most important variable in all of healthcare.
It sounds strange that this even has to be a thing. In fact, how the hell is this still a thing? Because it shouldn’t be a thing. Let’s keep trying to make this not a thing.
Without our unified passion and commitment to demanding a dignified, fair, and equitable system that works for everyone, nothing would ever change. Ever.
For the first time in my career, I have purposefully withdrawn myself as an invited speaker for a major health conference where I was billed as a patient advocate leader.
Part principle. Part protest.
After committing significant time and resources over the past several months to promote this event and their team, they only just recently dropped the bomb that, not only are there no speaker honorariums, they don’t even pick up the tab for travel expenses. (In hindsight, it would have been nice to know this upfront when they first solicited me to participate.)
Truth be told, I genuinely believed this particular company thought differently. …
“Simplicity” was the first original song I composed after a seven-day stint in the hospital following brain surgery on January 10th, 1996. That week represented longest I’d ever gone without playing since lessons began in 1986 when I was in 6th grade.
Mind you; my left hand had lost all fine motor coordination across the preceding six months since the onset of symptoms. The biggest question I had upon returning home and sitting down at our brown Baldwin spinet was, “did everything return to normal?”
Simplicity’s central motif had already been crafted in my head while bedridden, so I quickly riffed out the melody with my right hand. …
I had the chance to take a different track at last week’s The Atlantic LIVE #CancerStories event in Chicago. They had asked me to consider “#WeThePatients” as a theme.
To me, this is best represented by how the shared, collective wisdom embedded within our advocacy communities has genuinely changed our engagement with a severely flawed healthcare system.
More and more, the benefits of this kind of tribalism have significantly improved how we information-seek and make shared, objective decisions when confronted with what I am now referring to the consumer oncology marketplace.
More colloquially, I’m talking about when you have to start shopping in “the cancer store” and buy things you never wanted to purchase like surgery and chemo. Then, you hope your insurer covers the items in your cart with a Groupon.
Have a watch and let me know what you think.
Try the veal.
WATCH → https://youtu.be/1BYQPB-qHH4
So long ASCO and thanks for all the fish!
This year was indeed very different, not just because of the #NotTheCEO obviousness, but due largely in part to the perspective this massive event now has for me.
True, there were no 6:30am partnership strategy workshops, no exhaustive taxi-pinball to dozens of different venues within the same hour, not one anxious moment I’d be late for something, and no. badge that misspelled my name but gave me access to the exhibit hall which I did not need to remotely step foot into this time around.
(Note: I will miss tripping over the many different carpets, where intentional texture, height and plushiness are clearly directly proportional to the value framework of booth experience.) …
I will be the first to admit it took a while, but I have learned to express gratitude and appreciate how I would not be where I am today without those to helped “make me possible.”, e.g., the company I kept.
I now understand it is OK to give myself credit and to own my success internally (to fuel the old self-worth-o-meter) and externally (without coming across glib and douchey)
Eleven weeks of introspection since my exit have allowed me to forensically appreciate those who helped make me possible and those who did not.
For it wasn’t just those who pulled their weight, dug in, and believed; it was the overwhelming majority who didn’t, most notably those who genuinely believed they did and endlessly avowed “we support you.” through
verisimilitude, absenteeism and virtual cheerleading. …
I left the agency world in 2004 to pursue a life helping others like me and making a dent in the universe that would change the lives of millions of people for the better.
Now having exited that chapter 15 years later, the universe has responded with kindness, gratitude, and love. Having gotten so used to giving of myself to help others at great personal expense, the mere act receiving support, guidance, and opportunity (without the big charity hat on) from friends and colleagues is an entirely foreign concept.
My last chapter was a Sisyphean uphill struggle for so many years. Here I am just 30 days after my exit, and I am staring down the barrel of unimagined opportunities. I have reached the summit. Having lived inside an apple core for so long, the orchard upon which I look is inexpressibly beautiful. …