NOTE: In the fall of 2011, I was privileged to receive an invitation to attend Stanford's Med2.0 conference on social media and patient care. As a science geek, I was thrilled to be in the rarified company of researchers from Stanford, Harvard, NIH and Mayo Clinic, but the moments engraved on my heart were the people. Patients from all walks of life--many of whom struggle daily. Clinicians and patients have discovered that social media is a conduit for support and information, and it was social media that inspired this piece in 2014. Its spirit, timeless, as is this post's inclusion in a book. -scc
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 best friends 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 time since being young college students, fledgling mothers or in the throes of their first love affair to 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 unwittingly become a member. 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 as 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. In what can only be described as a twist of fate 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 kid's 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. There was a recent scare but nothing like receiving a pathology report that reads, “malignant.” 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. It's simply about life in all her machinations.
There is good news. Many suffering from this disease do not succumb and actually graduate from this club albeit with physical, emotional and psychic reminders. They hope never to attend a reunion.
Today’s meeting sobers me. I stare into my computer acutely aware that its not about me having and them not having. It's 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, those who've graduated 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. It's 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.
Mitakuye Oyasin.
-ChayrasCommsOUT