Chronic Illness and it feels so good...
~I am so much more than my EB, on the good days it is the smallest part of me, inconsequential and just one part of my complex puzzle. But then there are days where unfortunately all I am is EB. It is inescapable and all you can see in front of you. It consumes all of your time and energy and it is exactly who you are and in that moment the most important part. So this is the challenge of living with a chronic illness. Learning to live with the constant ebb and flow. To know the bad days won’t stretch on forever and that the good ones will pass by all to soon. ~ I wrote the passage above one year ago, in the midst of recovering from my latest health hurdle, Squamous Cell Carcinoma of the foot. I was sitting, as I had been in my apartment unable to walk for the past five months. (More on this later) There I was, forced to literally sit still and examine many parts of my life-how I took care of myself physically and emotionally, my relationships with others, my career path and ambitions. I was sitting broken in more ways than one. And little did I know at the time, healing in more ways than one. Who doesn’t love a good existential crisis and awakening at twenty-four years old? Yeaaa….
Anyways let’s fast-forward for now to November 2014, a month ago, where I had the privilege of experiencing a truly full circle filled weekend, as I crossed the threshold of Emerging Women live in NYC. I find it fitting for my first post to be about this experience, since going there is what has set me in motion again and finally given me the kick in my ass to share parts of myself with you all.
Going into this event, created for professional women ready to emerge and take a bigger stake in their lives and the larger world, were many women I was incredibly excited to hear speak and be in a room with. One in particular was Kris Carr. Unbeknownst to her, this women played an instrumental role in not only keeping my sanity over the past year but in helping me to explore issues I had always been grappling with and forcing me to ask the hard questions of how did I want my life to look like moving forward.Kris Carr is the creator of the Crazy, Sexy, Cancer Series. Over a decade ago she was diagnosed with terminal cancer, sent home to put her affairs in order. And today she is thriving, discussing how you can go about healing, which is not the same as being cured. The first time I saw her was on an episode of Oprah’s Super Soul Sunday. Yes watching Oprah became a thing during my five-month house arrest, do not judge. But I digress. So here I was mildly paying attention to this women who had appeared on the screen, beautiful, blonde, seemed healthy enough, when all of a sudden she spoke these words:
“I completely accept that I am a woman thriving with cancer. Its part of my life, It’s not something I am ashamed of or reject. There are pieces inside myself that may not be as well as other pieces. Would you curse the ground because a spot of grass is missing and should look like a perfect lawn? When we truly embrace acceptance that’s when our body exhales and can begin healing. At a scan years ago, I was so unbelievably tired, in my bones. And I felt like giving up. Not on myself, or my life, or my loves, or goals, but on the idea that until they say I am perfectly healthy, I am broken. That was a dragon I would be chasing my entire life If I didn’t change my thinking. I may never be healthy on paper but I am well...live for yourself, not your parent, spouse, career, illness-but for you. That’s the golden ticket.” –Kris Carr.
And cue the waterworks. I found myself sitting there on my couch sobbing, feeling something within the recesses of my chest crack open. She was saying what I so needed to hear. That for my disorder I might never be cured, but that doesn’t have to mean I am not whole, that I have to keep waiting for that magical day. This, this right here is my life so what am I going to do with it? And how much more time am I going to spend wishing it was different, or being angry at a body that though parts are broken, is also incredibly resilient and strong.
So here I was ten short and incredibly long months later sitting front row and center, looking into her eyes and hearing that familiar and comforting message. I remember at one point looking down at my right foot while Kris Carr was speaking and was filled with a powerful sense of gratitude. That I did it, I got myself here not just in the metaphorical sense but physically. My body provided for me, even when at times I did little to nurture it or show it my kindness and faith.
I’ll leave you with one more story from the conference. The days were long and packed with speakers. I wanted to be present and absorb everything, but after day one of sitting on a chair for hours my body was yelling at me. Big time. The wounds on the backs of my thighs were throbbing and I knew I had to make a choice. Either suck it up, continue to hurt myself and make it through, or to not attend every single workshop and speech. In the past every single time I would have chosen the first option, no question I would grin and bear it because damnit I want to be there and I’m not going to let my stupid body “win”. However that day a third option popped into my head. “What if Corinne, you put your feet up on a chair in front of you, that way you can offload the pressure and still attend everything you want to?”
Immediately evil Corinne…let’s call her Helga. Sounds like a punishing enforcer. (sorry to any Helgas out there!) She said, “Don’t be an idiot, everyone will stare at you, or worse think you’re lazy and just putting your feet up. Don’t stick out, don’t call attention to yourself, just BE like everyone else.” This time however I pushed back. The only person I am punishing is myself and wait just a minute... I kinda like myself! So I challenged Helga and called her bluff. I walked into the conference the next day and put my feet up on the chair in front of me. And I was Hella uncomfortable (or should I say Helga-heh cracking myself up...I do that a lot here. #sorrynotsorry. Oh I am so sorry I just resorted to that...) Sorry back to the story. I was extremely uncomfortable-emotionally at least, physically I felt fabulous. I met everyone’s stares. Some looked confused as to why I was hogging a chair, others didn’t notice. Just as I was starting to feel really anxious a woman arrived in the row behind me. She sat down-and turned around the chair in front of her, putting her feet up while leaning back.
Holy shit. Did I just give someone else permission to make themself comfortable? Did that woman think, “what a great idea, I’m exhausted and that looks really nice.” And that’s when I realized, when we allow ourselves to be authentic and ask for what we need, we in turn are letting others do the same. It is a trickle effect showing up, being present, and being authentic and I know moving forward I want to push myself to embrace my needs, my desires, and my truth. Because I sure as hell want to live in a world that is doing the same.
Music Monday Rec: Love the original My Body, by Young the Giant, but had to post a fellow female's version for this post...