ON THE OUTSIDE LOOKING IN

Today, I have turned over my blog to a new friend.  A few weeks ago, I was on my usual internet path.  Getting lost following one link to another and I stumbled upon the blog of Sharon Chayra, or simply: Chayra.  Her room (as she refers to each of our sacred blog spaces) can be found at chayracomblog.com.

I recently read a tweet that I thought was quite funny.  It's still funny, but I realize it's also quite true.  This thing has been retweeted hundreds of times.

"Facebook is where you lie to people you know. Twitter is where you are honest to strangers."

Chayra is a friend via twitter and that is how I found her blog and in particular, the entry she graciously allowed me to post here.  Twitter allows us to eavesdrop on conversations and, to be completely honest,  I have done my fair share of crashing in on a conversation.  The deepest conversation takes place on Monday evenings for one hour.  It is honesty and kindness and support and LOVE.  Don't ask me how or why.  It just is.

It is Breast Cancer Social Media at 9PM ET.  It's what I have occasionally referred to in some of my prior posts as #bcsm. It's a "support chat" or a very fast paced exchange of ideas around a theme of interest or concern for those affected by breast cancer.  It has become a tightly wound community.  The number of participants seems to grow each week. EVERYONE is welcome.  ANYONE is welcome.

This is Chayra and what follows was written on February 7th with eloquence, compassion, intelligence... her sincerity rings through each word.....oh, hell.... You will see what I mean in a second....

A Carefree Moment

 

WATCHING FROM AFAR: WHEN BEING UNINVITED IS GOOD

I wasn’t invited to the party but I frequently look in on the arrangement of remarkable females with awe. Much like that of a 13 year-old girl surreptitiously observing her older sister and her besties discussing such adult topics like wardrobes and sex during a Friday night slumber party.


The women in this group are no longer in their teens though many wistfully remark on the passage of lifetimes of being young college students, fledgling mothers or in the throes of their first love affair and where they are now. All of these women are indeed grown-up even if some of them are only in their twenties. And not just because of chronology; because of experience.


They meet regularly. So I peer on them regularly. I’m silent because I don’t want my attendance to be noticed. Does that make me a voyeur? Not that I think I’d be unwelcome but because its a group I’m afraid of joining and yet I know that I could join the group unknowingly. Ironically this group does not recruit.


I am fascinated by these women.


While their meetings do not occur in lecture halls or even in quaint tea rooms, they exude the same academic power and congeniality if only in the virtual space they occupy. In this group each woman has their own room in which they often retreat to collect their thoughts and wage an intimate battle that we as observers or even other members cannot fully appreciate. Some immerse themselves in complex scientific discussions, others bake cookies, all support each other.

I watch from afar.

Today’s meeting was different though and I found out about it incidentally. @whymommy and @ccchronicles were trending on Twitter. The blogosphere was atwitter. And the rooms reserved for these respective members—ToddlerPlanet and CancerCultureNow—were decidedly dark.

With greater speed than Paul Revere but one equally urgent it was announced that members Rachel Cheetham Moro and Susan Niebur, one a Brown University alumni with a Beloved and a terrier dog fond of farting and the other a wife, mother of two young sons and an astrophysicist who worked with NASA and joked with her husband about being painted green had died. They died within hours of each other on the same day.

Startling but not surprising.

You see the women in the group I’ve been peering on for months share a bond forged by a common experience I hope never to have. Cancer. Susan had a rare form of breast cancer called inflammatory breast cancer and Rachel died from metastatic breast cancer.

So at today’s meeting it wasn’t about being unnoticed, it was about removing tentativeness and being seen. It was about using the lessons of courage I had observed for all those months and showing a measure of respect as well as a demonstration of compassionate solidarity. It was also about giving the spotlight to breast cancer in a way that elevates the plight beyond trite tag lines and pink inspired products. In other words the people who suffer from cancer as well as their loved ones and even the people who care for them like the doctors, nurses, techs, nutritionists, clergy, scientists and street musicians.

While I too often gripe about my frenzied schedule, the kids’ missing homework or the perpetually multiplying wrinkles in my brow, these women are the ones in the real trenches of life. Their membership was decided for them so that now they battle things like brain fog resulting from chemotherapy, the resourceful ways to go to the bathroom when a central line damages the nerves in their arms. They urgently write, when they have enough energy, letters to their children explaining why mommy won’t be around for their recitals or weddings but that she loves them more than there are stars in the sky. Sometimes they simply narrate videos when their bodies—not their spirits—have been too ravaged to be able to hold a pen or thought easily. These women plan their funerals trying to choose between BBQ or vegan fare in between preparing and comforting their loved ones. Loved ones who become the foot soldiers who will have to carry out the tasks when these women are released from membership in the club.

These women are confused. Angry. Philosophic. Fatigued. Happy. Focused. Empathetic. Snarky. Resolved. Hurting. Purposeful. Wise. Grateful. Brilliant.

Above all, they’re human.

And humans die.

Life doesn’t play fair and she doesn’t fight fair either. We all belong to groups but the group I’ve had membership so far is the one without cancer. Instead of being humbled long enough to focus on that which is truly a priority like living, I get to bitch about things like doors left open so that the power bill equals that of a small country’s GDP. It’s not that this is inherently bad or their battles inherently noble though their efforts surely are. Its simply about life in all her machinations.

Today’s meeting sobers me. I stare into my iphone acutely aware that its not about me having and them not having. Its about sharing in the experience of grief and gratitude inspired by the stories of Rachel and Susan and the countless others who have since passed, who continue to fight and for those unwittingly about to join a group that strikes fear in most peoples’ hearts.

Six years ago I watched as my mother lay dying in a hospital emergency room from cancer. Its far from pretty. The memories of the short six weeks between diagnosis and death still influence my daily life. Much of it is anguish for her suffering and the lost opportunities. Yet there is great comfort too. What better way to remember to live than to be slugged in the face that you will die. Sooner than you think.

So today I thank the women in this group. I’ll continue to observe from a respectful distance but now I will use whatever opportunities I can to make others aware of the importance of understanding the disease and to seek out the counsel of their trusted healthcare provider regularly. I’m not arrogant enough to think I have any answers whatsoever but I have been intimately exposed to this disease. I’ll never change the world but I will be a positive ripple of awareness to make it better just like these women have done with their strength in suffering.

I’d be dishonest if I said I want to be a part of this group. I don’t. However, should I ever be inducted into this membership, I know I will survive no matter the outcome.

Post-script: To visit the words of these amazing women visit their respective blogs. Their blogs will continue with the good works of their support groups and loved ones. Godspeed.

Susan Niebur – http://toddlerplanet.wordpress.com/

Rachel Cheetham Moro - http://cancerculturenow.blogspot.com/




About Chayra:
Sharon Chayra is a native of Las Vegas and grew up when "the boys" ran the town. She's the mother of three inquisitive and kind souls and is a frustrated "wish-I-were-a-doctor." Since 1995 she has been the president/CEO of ChayraCom, an award-winning healthcare business development and marketing firm serving clients throughout the US.  Chayra writes mainly about medicine for many outlets but enjoys her blog—ChayraComBlog—best of all. She is 50% Scottish and 50% Apache but 100% passionate about issues relating to healthcare, families, spirituality and cultural awareness. With a predilection for haute shoes, competitive handgun shooting and cupcakes, she also likes anything shiny.



It's me again with my OWN post script.  I did not expect to be adding anything to these beautifully written words expressing such "reverence" for those of us who chat on Monday evenings.  However, five weeks after she wrote this piece and the very MOMENT I sent a message asking if I might repost her words here....  she was at the radiologist after discovering a lump.  I sent her a note and she replied within seven minutes.  The reply began with the word "irony."  I was on edge the entire day.

I suspect my new friend will be lurking this evening.  I don't know what our topic will be, but perhaps she will toss in a comment or two.  I will give her a shout out.  I didn't see this piece until a month after it was written.  Some of the participants in the Monday night chat may not have seen the post, either.  Tonight, they will.  I will post a link to this blog page and I will ask that we all send our positive energy in the direction of Las Vegas.

What made me send that message in THAT very moment?  I don't believe in coincidences.  I just know that I was on pins and needles hoping for good news and as of this moment, there is no news.  She is in The Land of Waiting.  As she says on her blog, "suspicious, not highly but suspicious nonetheless."  I have her back.  I'm waiting to exhale, waiting for good news.  Whatever they are looking at..... I want it to be a big suspicious NOTHING.