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| Credit: the fabulous Bernadette Birney |
But really I have always had two sisters. We have always been three.
Here we are on an Easter Sunday. It's possible the year is 1970. I'm the blonde in the yellow dress, hair freshly released from those squishy pink curlers, taking up my place at the back, hand on each of my sisters, already fully bearing the weight of being the oldest. Martine is on my left in white. Everything about her is neat and tiny even in this photo, even then. She and I look directly into the camera. We know what needs to be done and we do it. But Carla, the youngest, with the crazy curl across her face, her eyes are elsewhere. She looks like we've just grabbed her for an instant, stilled her wildness just for a second, long enough for this photo and then she'll be off again, darting away to wherever her eyes are focused, to resume whatever it was we so rudely interrupted.
That's a story that's easy to tell with the benefit of all these long years of hindsight. After all, she's probably all of 2 in this photo, so of course her eyes are elsewhere. She was just darling, her hair the most lovely chestnut color, a little affectionate mimic fluent in three languages, the baby of the three. We never could have known, or believed, back then, where life would take her. And us.
People often ask me how she is, my baby sister. I struggle to answer. In truth, I don't know how she is. And even when I have known how she is, I have spent so many years protecting her privacy, living inside her lies, that I hardly know where to start.
But this morning I crossed a line, a threshold. This morning I went Kali, I went dark, I went Fuck it, no more of this bullshit. This morning I cut the head off the lies, the true demon. I stare death in the face. Bring it, bastard. It's better than a life of lies, a life of suffering.
She is also the boundary that holds the darkness at bay, the force that allows us to live happily unconscious of our mortality. I think of her like a pair of good shoes -- when you're wearing them, you're not aware of your feet. You're just comfortable. You walk around. You do what needs doing. In a pair of bad shoes, shoes that pinch or chafe, you're always limited, always aware of the shoes, hindered. She's that: a sweet pair of shoes that fit just right, covering our feet so we can move around and do our dharma, our work in this world, what we are here to be and do.
Just this week in the writing course I'm enrolled in, the focus was Kali, so again I've been sitting with her and thinking about the courage, constancy and ferocity required many times in this life. Faced with hard situations -- when the shoes pinch, when the boundary between us and the dark gets thin -- she's there. We can turn away from what's hard or we can step forward, step up, and like her, eat the fucking demons.
Listen: it's all just stories. It's not a matter of believing them. They're just a useful tool for approaching situations in our lives. As Douglas says, we are all the characters in the story. And sometimes Kali is just what we need.
It's hard for me to tell this particular story. For years, I've been told it's not my story and certainly not my story to tell. It's her story, my baby sister's story. But since it's her story, it's also my story. What happens to my sister, of course it happens to her in a way that I cannot experience, but what happens to her also happens to me, to my other sister, to my parents, to our extended family, to everyone who knows us. What happens never just happens in isolation, and once it happens, trying to keep it isolated, creates the worst isolation of all: lies.
And telling the story: there's a part of me that feels like I'm transgressing, like I'm going against the family, airing dirty private laundry that shouldn't see the light of day.
But sorry, I need to tell it. I need to be done holding this under wraps. The lie of it is deadly. The lie needs its head cut off.
When my baby sister was diagnosed with HIV in 1990, that was death sentence #1. I will never, ever in my life forget the day we met at my parents' house, the day that she told them. I will never, ever in my life forget the way the news took my parents apart, the way my father stumbled from the room, landed sobbing in a heap in the green chair in the living room, my mother sobbing in her chair in the kitchen. That was a terrible moment, frozen forever in my memory, something I wish I could rewind and un-do, rewinding all the way to the moment of infection. My sister was robbed of her entire life at that moment. She was 21.
It didn't have to be that way, but so it was. It became something we couldn't talk about. She resented the intrusion, in the way that baby sisters will, always reading older sister criticism into every question. She went her own way, without medical insurance, into drug trials. She survived. We stopped asking. We became uncomfortably aware that we knew something essential about her health that other people, her close friends, did not. Of course no one wants to be identified with their illness, but the silence around it was unnerving. Did that boyfriend know?
She got married twice. I attended both weddings, but over all that time, we had become distant. In the lead-up to her second marriage, she had a Catholic renaissance, was re-baptized. She was pregnant. She was on the cover of an HIV magazine, featured in an article about advances making it possible for HIV positive women to give birth to healthy, HIV negative babies. I only know about the article because one day at work in the fall of 2006, I was thinking of her and randomly googled. Boom, that's how you find out what your estranged sister is up to.
Truly she's amazing. She's outlived the life expectancy she was given with the HIV diagnosis. She gave birth to a healthy baby girl in January 2007. She would say it's thanks to God. I say it's access to medical care and advances in treatment.
But that treatment is a double-edged sword.
In December 2008, a month shy of her daughter's 2nd birthday, just after she'd started a new job but before reaching eligibility for their benefit plan, my sister received death sentence #2. After weeks of serious headaches and finally blacking out while getting into her car, she was diagnosed with a terminal brain tumor. She was in the ICU for weeks, given months to live, the cancer inoperable because of its location. The tumor was most likely caused by a drug taken in one of those long-ago trials.
Since then, my sister has again defied the odds. She's had multiple rounds of radiation, lives now on an amplified drug cocktail. I haven't seen her for years. In July 2010 she gave us the final kiss-off, and now communicates only with my parents or me sporadically, at odd moments or in moments of crisis. Twice she's called my parents to say she's left her husband and daughter, could they come pick her up. The first time it was in the middle of a horrific storm that my parents set out, barely able to see for the rain, to pick her up, soaked, at a bus shelter and bring her to their house. The next day she barely spoke to them, smoked, apologized for her foolishness, and asked for a ride to BART. A ride to BART. My sister is a ghost of her former physical self, frail, shaky, off-balance. And she asked for a ride to BART. The second time, just a month ago, my mother declined. Later, my sister called to apologize for her foolishness.
And again, yesterday, she called my parents to ask for money. This has happened countless times since even before her diagnosis. My parents are not wealthy; they're retired teachers. I don't know what they responded to this latest appeal, whether they said Yes or No. It hardly matters. It's the asking, the entitlement, that makes me crazy. My sister wants nothing to do with us, except if she needs money. Her husband hasn't worked since the tumor. My sister can't be left unsupervised, he says, so he can't work -- which is in all likelihood true. They live on the charity of their church (which also sent my sister to Lourdes, in France, on pilgrimage), on the social security and/or disability distributions my sister receives from the state. They live in a tiny apartment. I've never seen it, although my sister did text me a picture of the new bed they bought their daughter not long ago. Receiving that happy text, with the photo, spun my head around. After months of silence, of nothing, then this?
Sometimes she texts me from the ER. Yesterday, after the phone call about the money, she texted my mother some terrified thought she was having in the ER about a possible side-effect from the Avastin. She laid the full horror of the rectal bleeding on my mother who, naturally, facing the death of her baby child, completely freaked out. Who does that to their mother? Turns out it was just a hemorrhoid, but when you're my little sister, after two death sentences and all the shit she's been through, every single thing is a crisis, every single moment, every trip to the ER, could be the last.
And still, she lives.
That's a story that's easy to tell with the benefit of all these long years of hindsight. After all, she's probably all of 2 in this photo, so of course her eyes are elsewhere. She was just darling, her hair the most lovely chestnut color, a little affectionate mimic fluent in three languages, the baby of the three. We never could have known, or believed, back then, where life would take her. And us.
People often ask me how she is, my baby sister. I struggle to answer. In truth, I don't know how she is. And even when I have known how she is, I have spent so many years protecting her privacy, living inside her lies, that I hardly know where to start.
But this morning I crossed a line, a threshold. This morning I went Kali, I went dark, I went Fuck it, no more of this bullshit. This morning I cut the head off the lies, the true demon. I stare death in the face. Bring it, bastard. It's better than a life of lies, a life of suffering.
* * * * *
It seems appropriate at this juncture to interject a little something about Kali, to explain why this is the state I found myself in this morning. Because I'm a yoga nerd, a month ago I spent a weekend in a three-day workshop of philosophy and practice with the great Douglas Brooks and amazing Sianna Sherman, the first day of which was devoted to Kali, who most people know as the goddess of time, death, darkness. In most of her representations, she is pictured with blood-red eyes, her great tongue lolling out, holding aloft a head in one hand, dripping blood, a sword in another hand. She is that from which life emerges and to which life returns, a primordial darkness of deep potency and power. She is also, in the teachings I've learned, an invitation to the deepest sense of who you are, an invitation to boldly say yes and step out, warrior-goddess style, and manifest not just your own success but better: your own greatness. She is that fierceness that is required to be the True You, in the face of any and all bullshit, that fierceness of childbirth, big, bloody and savage.She is also the boundary that holds the darkness at bay, the force that allows us to live happily unconscious of our mortality. I think of her like a pair of good shoes -- when you're wearing them, you're not aware of your feet. You're just comfortable. You walk around. You do what needs doing. In a pair of bad shoes, shoes that pinch or chafe, you're always limited, always aware of the shoes, hindered. She's that: a sweet pair of shoes that fit just right, covering our feet so we can move around and do our dharma, our work in this world, what we are here to be and do.
Just this week in the writing course I'm enrolled in, the focus was Kali, so again I've been sitting with her and thinking about the courage, constancy and ferocity required many times in this life. Faced with hard situations -- when the shoes pinch, when the boundary between us and the dark gets thin -- she's there. We can turn away from what's hard or we can step forward, step up, and like her, eat the fucking demons.
Listen: it's all just stories. It's not a matter of believing them. They're just a useful tool for approaching situations in our lives. As Douglas says, we are all the characters in the story. And sometimes Kali is just what we need.
* * * * *
It's hard for me to tell this particular story. For years, I've been told it's not my story and certainly not my story to tell. It's her story, my baby sister's story. But since it's her story, it's also my story. What happens to my sister, of course it happens to her in a way that I cannot experience, but what happens to her also happens to me, to my other sister, to my parents, to our extended family, to everyone who knows us. What happens never just happens in isolation, and once it happens, trying to keep it isolated, creates the worst isolation of all: lies.
And telling the story: there's a part of me that feels like I'm transgressing, like I'm going against the family, airing dirty private laundry that shouldn't see the light of day.
But sorry, I need to tell it. I need to be done holding this under wraps. The lie of it is deadly. The lie needs its head cut off.
* * * * *
It didn't have to be that way, but so it was. It became something we couldn't talk about. She resented the intrusion, in the way that baby sisters will, always reading older sister criticism into every question. She went her own way, without medical insurance, into drug trials. She survived. We stopped asking. We became uncomfortably aware that we knew something essential about her health that other people, her close friends, did not. Of course no one wants to be identified with their illness, but the silence around it was unnerving. Did that boyfriend know?
She got married twice. I attended both weddings, but over all that time, we had become distant. In the lead-up to her second marriage, she had a Catholic renaissance, was re-baptized. She was pregnant. She was on the cover of an HIV magazine, featured in an article about advances making it possible for HIV positive women to give birth to healthy, HIV negative babies. I only know about the article because one day at work in the fall of 2006, I was thinking of her and randomly googled. Boom, that's how you find out what your estranged sister is up to.
Truly she's amazing. She's outlived the life expectancy she was given with the HIV diagnosis. She gave birth to a healthy baby girl in January 2007. She would say it's thanks to God. I say it's access to medical care and advances in treatment.
But that treatment is a double-edged sword.
* * * * *
In December 2008, a month shy of her daughter's 2nd birthday, just after she'd started a new job but before reaching eligibility for their benefit plan, my sister received death sentence #2. After weeks of serious headaches and finally blacking out while getting into her car, she was diagnosed with a terminal brain tumor. She was in the ICU for weeks, given months to live, the cancer inoperable because of its location. The tumor was most likely caused by a drug taken in one of those long-ago trials.
Since then, my sister has again defied the odds. She's had multiple rounds of radiation, lives now on an amplified drug cocktail. I haven't seen her for years. In July 2010 she gave us the final kiss-off, and now communicates only with my parents or me sporadically, at odd moments or in moments of crisis. Twice she's called my parents to say she's left her husband and daughter, could they come pick her up. The first time it was in the middle of a horrific storm that my parents set out, barely able to see for the rain, to pick her up, soaked, at a bus shelter and bring her to their house. The next day she barely spoke to them, smoked, apologized for her foolishness, and asked for a ride to BART. A ride to BART. My sister is a ghost of her former physical self, frail, shaky, off-balance. And she asked for a ride to BART. The second time, just a month ago, my mother declined. Later, my sister called to apologize for her foolishness.
And again, yesterday, she called my parents to ask for money. This has happened countless times since even before her diagnosis. My parents are not wealthy; they're retired teachers. I don't know what they responded to this latest appeal, whether they said Yes or No. It hardly matters. It's the asking, the entitlement, that makes me crazy. My sister wants nothing to do with us, except if she needs money. Her husband hasn't worked since the tumor. My sister can't be left unsupervised, he says, so he can't work -- which is in all likelihood true. They live on the charity of their church (which also sent my sister to Lourdes, in France, on pilgrimage), on the social security and/or disability distributions my sister receives from the state. They live in a tiny apartment. I've never seen it, although my sister did text me a picture of the new bed they bought their daughter not long ago. Receiving that happy text, with the photo, spun my head around. After months of silence, of nothing, then this?
Sometimes she texts me from the ER. Yesterday, after the phone call about the money, she texted my mother some terrified thought she was having in the ER about a possible side-effect from the Avastin. She laid the full horror of the rectal bleeding on my mother who, naturally, facing the death of her baby child, completely freaked out. Who does that to their mother? Turns out it was just a hemorrhoid, but when you're my little sister, after two death sentences and all the shit she's been through, every single thing is a crisis, every single moment, every trip to the ER, could be the last.
And still, she lives.
* * * * *
I am furious right now and also aware of how absurd it is to be furious with someone who has a brain tumor, someone with pressure on her brain stem, someone who has every right to be freaked out, someone who lives with the terrifying prospect of death in every moment.
But fuck it: seriously? How, after more than 20 years of living with this prospect, how not to have made some peace? How, after a religious re-birth, how not to have some peace? How, after all this time, all the support, all the love, and yes, all the money, not to have some compassion for your eighty-year-old parents and not call your mother about bleeding from your ass?
And you wonder why I'm Kali this morning?
I am not sure these medical advances are good things, to keep people alive in such a state. Isn't that such an awful thing to say about your own sister, god damn it, such a horrible way to feel in view of so much suffering, her own, her husband's, her daughter's, her married family's, my parents'. I want my sister living. Of course I want her alive and happy and enjoying life in whatever way she wants. But there are times I dream of mercy, of peace, of letting The End of Time take you by the hand, just letting it go, not having to be a witness to the wasting of your own form, for years and years and years, losing everything you had that made you You.
I am furious and am also, again, utterly laid waste to, utterly broken and devastated, knowing that's my baby sister, gone from me, already, even before her actual death, by her own choice which I can only abide by even as I question whether it's wise or possible to abide by the wishes of a person made crazy either by religious fanaticism or cancer and whether there's any real difference.
What will I do when it's me? I like to think I will muster as much grace as I can, that I will cause as little pain to the people around me as possible. I like to think that all these years of practice will have prepared me, that I will be in those moments, even if they last for years, able to bring as much beauty to the pain as I possibly can, that I will be able to blow on the coals of that sorrow and kindle some little joyful flame.
And when it's time, that I will go with Kali a warrior, fully me, having swallowed the demons, taking them with me, not leaving them for my loved ones to live with.
It's so sad and so awful, but all I can hear is the beating of my own heart right now and this wish: go, go with Kali. Find peace. Be free.
Whether we're healthy or suffering, in every moment, may we choose to step forward, to step up, fight when it's time, surrender when it's time, and every moment, bring as much joy to those we love as we can.
From my aching heart to yours, all love, always.
Whether we're healthy or suffering, in every moment, may we choose to step forward, to step up, fight when it's time, surrender when it's time, and every moment, bring as much joy to those we love as we can.
From my aching heart to yours, all love, always.
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