Update (in case you were wondering): Getting out of the shower just now, I had major ideas, as you do, for making this draft more cohesive. Stay tuned for a more thematically sound version. Until then–below is the first stab.
The other day, I stood in our kitchen, which has a view that means a lot to me–I can’t tell you why (I know good writing involves not withholding from readers, but this is just the way it’s going to have to be for now)–and I said to Andy, rather callously (callous, because I have callouses, and because he hates talking about death), I said, People who drop dead really are the luckiest.
I have this penchant for unwieldy opening sentences and self-reflexivity. I get bogged down by all the choices presented in every second of the day. The choice to go back and rewrite the opening here, the choice to schedule my mammogram that is, what? eight months overdue. The choice to tell you about the view from the window, or not mention it at all. And what would Andy think of my mentioning it? It’s his view, too. The choice to smoke a cigarette. Would I increase my chances of a clean drop if I smoked more? Probably not. Dad has COPD–not the chronic bronchitis kind–the cigars on the golf course shh, don’t tell your mother kind. There’s so much discomfort.
Today I followed my Twitter breadcrumbs to a piece called “On Dying” in SALON by Cris Gutierrez (aka Sirenita Lake). She wrote it in July, and died on August 4th after a long time suffering. The post is beautiful and direct.
“Get tested. If, as is so common in the medical system, the doctors or nurses that you deal with don’t know what you’re talking about, push on through yourself. If you don’t have the mutation, you’re done. If you do, you should start an aggressive program of monitoring. I don’t know of any, but figure it out. Have a frequent MRIs of your pancreas, because this disease is fast and silent.”
Her summary of the ways the disease damaged her body throughout the years leaves me at a loss for words. Reading it motivated me to get out of bed after a hard night, reminded me how lucky I am (knock on wood). I’m not a nurse or a doctor; I’ve had a fortunate distance from the things that go on in hospitals and hospital beds in living rooms. I feel a bit like when I was a teenager, the first time I heard the word episiotomy and found out what it meant. I remember the fear and surprise and saying, “I had no idea.” A cut to aid in birth is nothing compared to all the cuts made to keep us here. I had no idea. No idea of all the ways a body can torture itself. I thought that, except in extremely rare instances, doctors could keep us comfortable. Isn’t that what the people in white coats on TV say? “We can keep her comfortable.”
I had not heard of Sirenita Lake before today. Reading her obituary makes me grateful that she lived and expressed herself.
I remember in the weeks after G died, I read notes on the internet in which people would say, “I never knew him personally, but . . .” And I would think: this loss. This loss is so vast. I would think other things, too, that I can’t say here, the way I can’t elaborate about the view from our kitchen window.
I never knew Sirenita personally, but she has improved my life in the hours since I learned of her. It feels sort of miraculous–being able to read about her on the internet, seeing her community pull together and celebrate her life and her thoughts, and the way she loved wholly and honestly.
Are she and Steve Jobs and my Uncle Steve and dead unnamed gurus of internet technology raising a toast with G somewhere? Leaning back, lighting cigars? Probably not. How did she put it? Paraphrasing, “. . . there will be no more Sirenita.” (No more Steve Jobs, no more Uncle Steve nor particular internet innovators. The worst, to me: no more G.) The “organization of molecules, energies, spirit, intellect, memories, [and] skills” that go by her name (or any other) are a “unique configuration,” “essential and irreplaceable,” and upon death, will be no more.
It’s devastating to be on the surviving side of annihilation. Absence. We won’t be seeing them anymore.
The last place I dined with my Uncle Steve the last day I saw him is also the place where I met G for the first time. It’s one of those weird coincidences. All I wanted was a nice dinner out–an innocuous breadcrumb of a desire–and G entered my life. He showed up with his dimples and accent, his questions and answers, his eyes welling with tears to match mine. He showed up completely unexpectedly.
Long before that, the week Uncle Steve died, maybe 15 years ago, his friend called my cell phone and told me that it was the end, and that he was going to hand the phone to Steve so that we could say goodbye. I was on a hiking trail and had to run up to a higher spot to clear the static. I stood there on the dirt path trying to stretch taller, thinking every centimeter might improve the reception. I told him, “I’ll see you again someday.” Uncle Steve, even weak, used energy to disagree kindly. He said, “I know you think so.”
I was much younger then. I had forgotten when I said (and believed) that I would see him again someday that he had lost partners and lovers to horrible deaths. He had been a handsome young gay man in the 1970s in Florida. Yet at 28 I thought I knew the truth; my faith about souls was unshakable. It makes me laugh now. That was my first deathbed cell phone call. I did the best I could. He knew that.
He also knew better. He had experienced hours and weeks and months and years of seeing feathers on the ground and knowing, no matter how much we want to believe in signs from beyond, there is no proof. Instead, we have only imaginary conversations and laughter.
Sirenita’s most popular piece at Open Salon is entitled, “Why I Hate Monogamy.” I just read it. She was the real thing, a true nonconformist. Here’s another excerpt of her writing (from a different post).
“. . . It occurred to me that telling the truth is a worthwhile goal, and that I was fed up with living a double life, pretending to be just like the other girls at the office while being drawn by my own dark and unsanctioned currents away from the mainstream. So I took a risk that proved worth it. If you like me, it’s for things that are true. Lose pretense, and dying holds no terrors.”
What a voice for good.
Her obituary says that in the last decade, she wrote prolifically. When I read that word, “prolific,” my body reacts. It gives off a yes. That’s what I want for my life: to write prolifically. I’m still struggling with how to tell the truth, my truth. I’m still holding on to the view from the kitchen window and what to say or not to say about it. I struggle with judging myself for the way following breadcrumbs, one choice at a time, lands me in places of nonconformity by accident, not because I’m a badass like Sirenita. As I struggle, I have her example of bravery and persistence. She didn’t get a quick death, she suffered awfully and still she kept on writing.
I wonder often about G’s last minutes. It’s a sacred topic that I won’t attempt to deal with publicly except to say, one of the things I wonder is if he had been able to leave a last message to the world at large, what would it have been?
Uncle Steve didn’t hang up after he told me, “I know you think so.” He went on to say, “I love you, sweetheart.” That’s the part I’m supposed to remember. Not his insistence on mortality, or the dirt path, or the straining for better reception.
Sirenita, Cris Gutierrez, ends her last post with this, “If you want to give me a special going away present, spread the word about the BCRA gene. Save some lives.” I’m sort of afraid to be tested. If I work up the courage, I’ll have her to thank. And yes, I’ll try to be brave enough to blog about it.