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How It Really Feels to Advocate

 

If you were to look at my Facebook feed, or my instagram page, you might get the impression I love advocating for ovarian cancer awareness.  You might also think that I am somewhat successful in my efforts, I have faithful supporters and it is my life’s ambition to carry forth the message.  You’d be wrong.

Honestly, advocating sucks.  It is relentless, frustrating, unrewarding, unwelcomed and often embarrassing.  Hardly a day goes by in which I find something humorous or interesting I’d like to post, only to be reminded that is not my purpose – my purpose is to post about ovarian cancer (ovca).  So often I stand in front of my closet, eyeing a coral shirt that suits my mood, only to realize I can not wear it, I must wear the teal I want others to recognize.  So often, as I recite the symptoms of ovarian cancer to a interested party, I watch as their eyes glaze over and their thoughts take them elsewhere, perhaps a grocery list or dinner that night.  Almost every day I find myself in a discussion about cancer when I really want to talk about West  World, or the weather.  And I long ago lost count of the number of people who refuse to meet my eye, knowing that to do so might take them down the rabbit hole of cancer awareness.

Advocating sucks.

A case in point is my yoga studio.  My studio is staffed by the most caring, generous group of women I’ve ever known.  As such, they have helped me turn the studio teal for September, ovca awareness month.  They’ve asked me what they can do to help and willingly follow my lead.  My request has been simple – mention  teal ribbons to students, ask them to grab one on their way out and hang it somewhere, then post a picture on FB or instagram.  Teal is the color of ovca, and my primary goal is to make teal the new pink.  They happily do this.  Yet shift after shift I watch as women (and men) leave the studio, not even glancing at the ribbons, definitely not talking or thinking about ovca.  Of the few people who have taken ribbons, only 2 have posted pictures.  And I feel embarrassed.  And tired.  And discouraged.

When I can put aside my personal feelings, I feel afraid.  I am afraid because of the hundred women walking by me that day, at least one will be diagnosed with ovca.  When she is, she has little chance of being stage 1; she will be stage 3 or 4.  With that diagnosis she has only a 15% chance of making it out of treatment.  She will spend the rest of her time on our planet getting some type of treatment, most likely chemo that will leave her bald, and exhausted, and swallowing daily the nausea she lives with.  She will spend the final years of her life vacillating between two opposing thoughts:  I must fight this and What’s the point?

I watch  women come and go and I know that no matter how many times I tell them the facts that could potentially save their life, they don’t know.  The woman who yesterday listened to my speech about the lack of diagnostic teasing for ovca, the need for women to be aware of their bodies and advocate for testing, is probably today telling her coworker that she is screened yearly for ovca when she has a pap test.   The lovely young lady who just listened as I listed the symptoms is going home tonight and looking at her bloated belly and thinking “nothing to worry about, I’ll eat less tomorrow”.  Even my friend who has listened to my son and I spout off statistics, symptoms and pitfalls in our medical system will be telling her daughter “I don’t have to worry because I’ve had my uterus removed”. Fallacy after fallacy.

As I fall asleep at night I wonder what I am doing.  Why am I devoting my life, my energy,  the bulk of my waking moments, to forcing a conversation no one wants to have?  What is the point of trying to make people learn about a subject fraught with fear and helplessness?  Why am I risking alienating those who love me as I doggedly insist that our lives be wrapped in teal?

As I have these thoughts, the faces of the women I’ve known pop into my head.  It’s as if I have 2 movies playing at the same time, each demanding my attention, each calling  “look at me; feel me”.   My mind goes back and forth between the visual of those averting their eyes, and the memory of a lovely young dentist, Yi, who thought nothing was wrong until there was an apple shaped growth poking out of her belly.  She is gone.  I start giving in to the sense of futility of my efforts only to have the laugh of a spirited young grandmother, Cindy, no longer here to watch her granddaughters grow into young ladies.  The feeling of embarrassment begins to wash over me as I recall the people who smiled politely and claim I am doing good, then left without a ribbon, yet before it can take over my soul the face of the brilliant 36 year old Sarah pops into my head.  I see her as she tells her story, a story of missed diagnosis that left her stage 4.  Her emaciated body is all I can see as I remember her, on a brutally cold April day, huddled under a blanket at an ovca walk,  working on her own advocacy work, determined to make a difference in the days before her death.

Some nights I fall asleep with a renewed sense of purpose.  Some nights I fall asleep promising myself that the next with be a day with no advocacy work – a day in which I wear my pretty coral shirt and talk about Netflix and and the pros and cons of collagen supplements.  Some nights I fall asleep angry that people aren’t listening.

Most nights I fall asleep feeling guilty.  The guilt sneers at me as the self indulgent movies promoting discouragement play in my head.  The guilt reminds me: I am one of 15%.  I am a lucky one.  I’ve made it out of treatment, I’m alive to tell my story, I have my hair, I can keep food down, I can make it through entire days without a 2 hour nap, I am not working on my obituary or funeral plans – I made it.  On these nights, as I fall asleep reflecting on my good luck, I know that the next day I will choose the teal shirt and I will not discus Netflix, I will continue advocating, because I must.

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