I recently watched Suleika Jaouad’s TEDtalk and so much of what she said resonated with me not so much as a childhood cancer survivor but as heart failure [and] transplant survivor. She addressed the myths that are played out in social media using adjectives like “untrue”, even “dangerous” as they “erase” the very REAL challenges of recovery, survivorship.
She is spot on in that many of the images we see rolled out whether on Facebook or Instagram present one side of REALity: the upside. Because who wants to post pictures of the bad days and who really wants to hear about the challenges that persist long after the end of treatment?!
And so the silence continues. I wrote about this silence, this suffocation in a post entitled, Giving Voice to Trauma.
Survivorship is a two-sided coin: the living out of the cure and surviving survivorship. You can’t have one without the other because cancer treatment as we know it today remains toxic leading to one too many chronic conditions, late effects in most survivors by the time they turn 45.
I recently created an Instagram account @survivingsurvivorship; I invite you to follow as the intent is to present that balanced picture of living, healing and surviving.
I’d also like to invite you over to the Living the Cure: Where Informed is the New Black Facebook Page as a resource for survivorship and late effects research as well as ongoing encouragement, motivation and inspiration.
The truth is I haven’t given equal time to the challenges; more on that in Why I Blog. Now is the time to temper Living the Cure with Surviving Survivorship despite the very real presence of what Jaouad refers to as “the expectation of constant gratitude” placed on survivors: this day, every day.
If you haven’t watched Suleika’s TEDtalk, you can do so here. [17 minutes]