Friday, June 10, 2011

live fully or surrender

I'm feeling really down today.

I went to visit an old school friend this afternoon at his studio, which was great; I forgot how much we had in common and I've always admired his knowledge of proper clothing construction. He is the professional I wish I was. So we were catching up, and of course it was requisite that I talk about my cancers. I explained the neck surgery, the chronic pain, my medication regimen, how I really want to find a job that offers health insurance. The documentary, and how I hope it will somehow help others. All with a casual insouciance that no doubt disturbs people who don't know me well. I may as well have been talking about a paper-cut.

But under all of those flat recitations there was a tightening of my chest, my eyes started to water, I felt a pain bubbling up within myself that was definitely NOT the Thai curry I was eating. Here's the comment that did it, and if you are a cancer survivor you've heard it countless times: "Wow, you're so strong! You're such a badass! Most people can't even handle normal life stress, let alone cancer". I know, I know. Believe me, I didn't choose to be a badass, it just happened.

I always think to myself, "If you had cancer you'd have done the exact same thing", but I never say it because people unanimously reject that statement. "Oh no, I don't know what I'd do!" Let me tell you: you'd do what you need to survive, you'd bear your pain and try your best, no matter how ugly and messy it gets. Everyone has to do it at some point. Cest la vie, and shit.

I'm not a badass, I've just had some bad luck. And this is why I'm feeling down today.

I don't want any more back luck for awhile. A central struggle for me since moving here has been the fear of cancer returning, just as I've made the life-changing decision to continue on with my career aspirations. I have hip pain, I fear an Ewing's recurrence. I have ongoing digestion troubles, I fear colon cancer. After you have two primary cancers, nothing is improbable. The rain-cloud looms incessantly overhead. Sometimes it chokes me.

I am afraid only because I am happy, because I have something to lose now, and to be cancer-free seems too good to be true. My instinct is to refrain from savoring the freedom and happiness I feel due to a sinking feeling, deep inside, that I must prepare myself for the next big storm. It's a struggle to get past this.

I will close with this, from fellow cancer blogger Cara/growthandtransition, whom I've been following lately and admire greatly for her openness:

"This tiny bird reminds me, still, that Courage has a face - it doesn’t come in feats of strength, but in fear and longing, in pain... I’ve come to the conclusion that we need not differentiate circumstance, only response. One person’s measly splinter may be another’s downfall. Regardless of experience or level of pain, everyone must make a choice to live fully or surrender."
(full entry here, check her out.)


Jackie said...

Thanks for this post, Kaylin. I have the exact same response as you when people say how "strong" I am. You're right - we do what we can to get through given our resources, coping skills, etc. I am a much better cancer patient/survivor now than I was immediately following my diagnosis, and it's been a struggle at times to learn what feels right. Sometimes I feel like I'm treading water and barely keeping my head up. But I am, and you are too. I'm always inspired by your posts and your honesty.

Hope all is going well with you in Brooklyn!

Laurie J. said...

This post will hit people on a many levels. Even though I have marveled at people's strength and fortitude while they have gone through things I don't think I could handle, I know that during my own times of real darkness and despair, I couldn't handle it either. But I had to. So I did.

I loved your friend's quote and how it spoke to you. There is true encouragement in community- power in knowing you aren't alone. The most awful aspect of disease and other traumas is the sense of aloneness. Suffering separates us from "normal people." And there's something terrible about isolation. And something wonderfully healing in being connected.

I'm hoping you find more and more comfort by the knowledge that sharing your story will help others feel less alone. Still praying for your complete healing--
Brooke's mom

Jenny said...

God Damn girl!!! Amen to all that and more. You took the words out of my mouth.

jcleary555 said...

Today is the 8 year anniversary of my daughter Kaya's death. She was 4 months old and died from SIDS. Anyway, just came Accross your blog and have been reading and reading for hours! This post touched me because I experience the same "oh you're so strong , I woulldn't be able to handle losing a child".....I straight up tell them, no I'm not any stronger than you, I just keep on going everyday, the pain is there but I have no choice but to keep on going, and if it happened to you you'd do the same thing.

Best wishes, I have chronic health conditions and probably PTSD which I learned reading your blog. And being uninsured is basically like being fucked because getting what u need is next to impossible and that's after jumping through 10 hoops!