Guest Post: Komen's Wild Ride

If there's one thing I appreciate in a blogger, it's a stand-out voice.  There are a few qualities that I think make an excellent health activism blogger: 1. Passion - kind of obvious, but never to be underestimated!  2. Strong - this is also obvious, though perhaps harder to qualify...strength could be through how the writer 'speaks' or by virtue of what he/she lives.  3. Balanced - I think this can be the hardest to do.  I may like a number of bloggers, but the ones I keep coming back to read strike a balance between ups and downs.  Writers who only cover problems, pitfalls, and setback; who only discuss what's wrong with society and why life with their condition sucks wear me out.  Naturally those who are rainbows & glitter are a bit easier on the spirit, but eventually that just doesn't feel true-to-life.

Today's guest blogger really does it all...and usually more than once.  Alicia Staley is a 3-time cancer survivor (Hodgkin's in ther 20's, then 2 bouts of breast cancer), engineer, and founder of The Staley Foundation...not to mention activist extrordinaire (you can read her blog here).  Having interacted with Alicia on Facebook, Twitter, and WEGO Health, I even had the chance to meet her when we were on a panel together (with Amy Gurowitz) for the Social Media & Health Pharma conference. 

Those of you who follow me on Facebook or Twitter may have picked up on my ambivilance toward Komen for the Cure recently.  But of all the articles & pieces I've posted about, few really hit the mark so well as the voice Alicia used in her post on WEGO today.  Alicia wrote basically an open letter to Komen, calling them out on their behavior, pointing to the biggest problems, and issuing one last call for Komen to mend their ways.  No one could say it quite like Alicia.

Dear Susan G. Komen for the Cure:

Stop. Just stop. I've reached the point where I'm embarrassed by you and all your branding efforts for the cure. I see tons of pink ribbons, plastered on everything from shampoo to lawn mowers and cat litter.  I'm beyond aware.  I'm frustrated.  I can no longer justify your breast cancer awareness campaigns to my friends that want to know why there's no cure.  I've received more emails in the past week over at Awesome Cancer Survivor expressing exasperation at the breast cancer community than I care to count.  As a breast cancer survivor, I shouldn't have to justify your behaviors. 

When you launched your partnership with Kentucky Fried Chicken  (aka "Buckets for the Cure"), I excused your lapse of judgment.  I assumed it was a temporary slip, and you'd eventually focus your energies back on partnerships and alliances that aligned more closely with your stated goal of "For the Cure."  You trumpeted the partnership, declaring KFC would make the largest one time donation of an estimated $8 million to Komen. The ultimate goal of the $8 million donation never materialized.  According to your own reports, you only took in $4.2 million.  Not pocket change by any stretch of the imagination, but only about half of what you were looking to grab. You are the self-proclaimed leader of the breast cancer community.  Where is your leadership? 

When you went after the little guys, suing everyone and anything using the phrase "for the cure", I lost all respect for you.  You attacked the very people that are desperately seeking a cure and trying to find some solace in the face of this devastating disease.  Instead of reaching out your hand to help lift these groups up, you smacked them down with frivolous lawsuits.  Exactly how is "Grandmas for the Cure" hurting your multi-million dollar campaign and branding efforts? These small charities, working for a cure, picked up the baton you dropped long ago.  You are the self-proclaimed leader of the breast cancer community.  Where is your leadership?  Where is your compassion?

When you launched a perfume, I realized your days as a leading breast cancer charity were dwindling.  A perfume named "Promise Me?"  Why?  Do you know that chemical sensitivities are heightened while undergoing chemotherapy?  To this day, almost 18 years after my last chemo, I still have trouble with certain smells and tastes.  I can't imagine the thought of wearing a perfume that reminds me, everyday, of the lack of progress made in the fight against breast cancer.  Were you expecting every woman fighting breast cancer to spritz on some "Promise Me" before heading out to the cancer center?  You are the self-proclaimed leader of the breast cancer community.  Where is your leadership?  Where is your compassion? Where is your creativity?

And now this: Roller Coasters for the Cure.  Did someone run this one by corporate? A Komen affiliate has co-opted the pink ribbon to plaster on a roller coaster ride.  According to the press release: "Wild Waves challenges all U.S. theme parks to paint their Skycoasters pink to raise awareness for breast cancer." Save the paint. Remind me again - for what exactly are you raising awareness?  We're all aware.  It's time to move beyond awareness.  You are the self-proclaimed leader of the breast cancer community.  Where is your leadership?  Where is your compassion? Where is your creativity? Where is your self-respect?

The backlash is here.  The Komen Bandits are organizing.  Count me in as a bandit. I'll carry the torch for Joan, Jeannie, Susan, Martha, Mary, and Lisa.  These women were dear friends that died from metastatic breast cancer.  I'm asking you to take a leadership role in addressing the lack of progress made for those facing the metastatic aspects of this disease.  The once mighty Pink Ribbon, used all these years to herald the importance of breast cancer awareness, is quickly becoming the poster child for cause marketing overload.  Don't make this your legacy and drag the rest of the breast cancer community down with you.

You've done a great job of making us all aware of breast cancer.  Please take those next steps to help those that continue to suffer.  Leaders don't rest on their laurels.  They keep moving, they keep innovating. They don't go back and rehash the same products and promotions over and over again.  We get it: You could sell a pink ribbon popsicle to a woman in white gloves.  But, please know, your days of King of the Mountain won't last long if you don't address the groundswell of criticism directed at you.  Wake up, the bandits are coming.  And we're not happy.

Promise me that metastatic disease will become a priority for your organization.
Promise me that you'll visit the nearest cancer center and sit with those women going through treatment right now.  It's not a pretty sight.  Frustration is alive and well there, if not much anything else.
Promise me that you'll remember why you started this fight in the first place.

Promise me that you'll take these next steps or get out of the way.

Speaking For Myself ... Whoever That May Be

Photo found here.

I am not my illness.  I am a wife, a daughter, & a granddaughter; an auditor, a leader, & an activist; a lector, an extraordinary minister of Holy Communion, & a youth minister.  I live to laugh, cry at the drop of a hat, and talk to my pug as though she were human.  I love to buy shoes, am fascinated by tiaras, and think it’s fun to impress with acts of physical strength.  I plan to be a mother, a community leader, & to make a difference in this world.

I am not my illness.  But neither am I the person I was before diagnosis.  I still love shoes – but the ones I choose accommodate my tendon and joint problems.  The strength I would show off is gone – now even washing dishes or carrying bags is a problem.  My illnesses shape my physical self, as well as my goals in life because of what I go through.  I was a leader as far back as I can remember, but now I also lead other patients and disability activism groups.  I still plan to be a mother, community leader, & make a difference.

The affirmations we hear in our communities are legitimate, but I have concerns about their accuracy.  The two I hear most are "I am not my illness" and "my illness does not define me", and they evoke an emotional response for me.  I am only speaking for myself - I can fathom many reasons why (and how) both statements may be spot-on for a lot of people.  But while I believe I am not my illness...I do think my illness defines me, or at least many things about me.  And that that's ok.

I am not my illness, but you must meet Sjogren's to have met me. 
For one thing, you simply cannot talk to me for more than a few minutes without me bringing it up.  So by default, you will meet it - I will introduce you. 
Stay by me a little longer, and you'll learn about its personality - when it wakes up on the wrong side of the bed, I have trouble moving.  When it has a mood swing, I go from all-in to last-leg.  When its feeling benevolent, I get in a long walk. 
Then, if you're really loyal / curious / masochistic, you can stick around through the flares and really get up close & personal.  That's when you can make friends with greasy hair & all-day pajamas because I can't handle the exertion to take a shower, or relieve Shawn of his usual duties as butler because I can't get up for a drink/snack/tissue/medicine/ToSaveMyLife. 
And Sjogren's is just one member of the entourage; "I'm freezing" and "I stood up and am going to pass out" are just a few calling cards left by Dysautonomia.  "Please don't so much as put your finger on my shoulder" (Fibromyalgia) also likes to hang around. 

I am not my illness, but I am at times exhausted, mentally foggy, achy, weak, light-headed, and yes even scared.  Those aren't my "normal" traits.  I prefer to over-schedule, be quick to process information, feel strength coursing through my body, horse around, and take on any challenge I can find.  How could I say I am not defined by my illness?  To me, that would be as silly as saying I'm not defined by my race, religion, or gender.

When we say "my illness does not define me", I wonder if what we really mean - if the message we're really trying to send ourselves - is "my illness does not confine me".  That makes a lot of sense to me.  One of the things I fear most in life is becoming confined, restricted, or controlled.  Sitting in a doctor's office at 15 being told I shouldn't continue with the thing that gave me the greatest joy & pride to that point, Color Guard, that's exactly how I felt.  Maybe because I was so young I hit a good mix of rebellious and malleable; I didn't passively accept anything, but also learned over the years to pick and choose my battles.  That's a conversation for another day - but my point is I do not believe I am confined by my illness; I am still in charge, still do what I want, still control my future.  I just do it acknowleding an influencing factor.

I am not my illness.  I am not confined by my illness.  Sometimes, I am defined by my illness.  I am an interesting person, active in the world around me, & happy with most things about my life.  I have my soul mate, a career I love, & a future to look forward to.  I am a Sjoggie, and that's ok with me.