Death, you’ve given me a life worth living
Rose by Phyllis Schmitt
Of course, some friends just refuse to be triggered!
That happened at Monday’s book group (you know who you are), when the ladies did a reverse bait and switch on me, substituting Oliver Sacks’ shorter memoir On The Move for Cokie Roberts’ tome Capital Dames: The Civil War and the Women of Washington, 1848-1868. They knew their fish (me) and tossed the bait (interesting gay author), hoping I’d snap it up. No, I’m mulling it over.
If we just act as if the show will never end, it won’t. Right?
How sweet is that!
I have been dying for the four years I’ve been attending the group, so of course they can’t believe I’d ever leave, especially with such a good book as bait.
Then there’s The Peutz-Jeghers Syndrome & Juvenile Polyposis Syndrome Online Support Group that I’ve loved and nurtured for over 15 years, all the while dying.
This morning I drafted yet another near-demise letter entrusting them to one anothers' care, because I’m going on hospice and can no longer keep up physically or emotionally.
Why should they believe me this time?
I don’t even believe me myself!
After all, I’ve outlived many group members whose cancer diagnoses post-dated mine. And exceeded all predictions on my own date of demise.
So much to be said for the healing power of love, service, dedication.
That letter contains another, important-to-me secret, my coming out as a lesbian.
I am a lesbian and this group has deep roots in my many years of lesbian-feminist activism where I developed the skills, confidence and perseverance and to, “be the change I wish to see in the world”.I chose to keep this secret during the long years of social-political-religious wrangling over my right to love and live openly in the USA. To keep our group’s “peace”, I was willing to hide. Today, I’m not.
It’s important to me that you know this, because you may not know that you know a gay person. Or because you’ve loved ones or associates who are. Or because you may be yourself. May we live in ever more acceptance and understanding of one another.
It’s important to me that you understand that love has motivated my every action – here and elsewhere – and that love is entwined with my activist forebears (LGBT, familial, Buddhist, social justice, environmentalist and Christian). I have received a rich inheritance and have shared it with you.
So, I get to trigger the members' internalized bigotry, homophobia and prejudices along with triggering illness- and death-phobias.
A recent conversation with my friend Adrienne Lauby affirmed my impulse, as did I’m Not Your Token by Toni Bell. (1)
The microaggressions that many people of color experience at the hands of some white folks may not be laced in what we think of as hate. Hate may even be too harsh a word. But they are laced in subtle notions of superiority and indifference that in many instances cause more harm…
I choose not to play. I no longer want to be a token or to strive for validation within white, ethnocentric, heteronormative spaces. These narrow spaces don’t represent my values or me. Other people’s negative perceptions? Not my problem. Now, this doesn’t negate the very real negative impact of these overt and covert forms of bigotry. When bigots project their negative perceptions, they are trying to make their pathology my problem. However, recognizing and naming the problem goes a long way into dismantling the internalized forms of these bigotries. I can embrace my culture and my identity as well as respect and celebrate the culture of others.
I don’t see differences as threats, something to be tolerated or even ignored. Differences are to be respected, honored, and celebrated. This is what Dr. King was actually dreaming about.
I, Stephanie, so appreciate her willingness to call out bigotry and microaggressions and her ability to respect, honor and celebrate difference. This is a world I too wish to live and die within.
I will let you know how my “coming out” goes.
Before I return to triggering around illness and death, I’ll stay with racism for another few sentences.
I read the blog barefootmeds by Megz, a young, white South African physician. Her recent post What I See In Your Photos With “Poor African Children” should be must reading for all who “travel to exotic locations, meet adorable children, and shoot them”. (2, 3)
Whether you’re going somewhere soon or just sorting through your trip photos at home, I hope you’ll read these articles and reflect on who, what and how you shoot.
Dear friends, my time is running out, so I will reflect a bit more on the conundrum of triggering.
This my mylifeline site – my mission is to explore living with serious illness, conscious dying and whatever else interests me. While I strive to make it a safe, welcoming space for all, my primary motivation is to “write the book I want to read”. I’ve read thousands of books and amazed by the scant literature on these topics that speak to my heart and soul. I trust process and am willing to follow mine as minutely and fully as able.
It’s up to you to protect yourselves. Remember to breathe, stroke your skin, rock or walk, take a break. You must learn your triggers and protect yourself.
When we’re physically together or interacting via email, then it’s my responsibility too to not trigger you…but you know what I’m about and it’s a bit late in my life to change now.
It’s not my mission to change you, but to learn, respect, honor and celebrate our differences.
I must end, dear friends, but not before sending one last link, Adrienne Rich on Lying, What “Truth” Really Means, and the Alchemy of Human Possibility. (4)
As always, reserving the right to contradict myself…who knows how this will unfold!
As always, love and more love, gratitude and more gratitude, Stephanie
(1) I’m Not Your Token
September 1, 2015
(2) What I See In Your Photos With “Poor African Children”
August 23, 2015
(3) travel to exotic locations, meet adorable children, and shoot them
(4) Adrienne Rich on Lying, What “Truth” Really Means, and the Alchemy of Human Possibility
by Maria Popova
“Death, you’ve given me a life worth living”
Stephanie at Smartpatients Cancer Storytelling Event