a survivor’s note on the unthinkable

Twelve years ago, the morning after the 2004 election, I sat at my desk at my old job, crying as I sent a long-winded email to all of my like-minded friends and family, telling them to keep heart after John Kerry lost to George W. Bush.  In that moment, the anger and sadness felt so enormous.  How, HOW, I wondered, was our county going to endure another four years of Bush?

Oh, George.  How I miss you now.

This morning feels cataclysmic.  It feels like 9/11. Yesterday’s brilliant warm sun has given way to thick, low clouds and a steady rain.  It may just have been my own state of mind, but every person I passed on my commute to work seemed lost and sad, or at least hollowed out.  This election has suck the collective life out of all of us.  It is hard to imagine that there are people experiencing joy anywhere on earth right now.

I should walk back my 9/11 comparison.  That event came literally out of the clear blue sky.  This atrocity has been brewing since the day our first African-American President was elected.  We had eight years to stop this from happening.  And we failed.  We are not innocent victims; we have no one to blame but ourselves.

In 2000, I worked for an old hippie lawyer.  I was devastated after the hanging chads and Bush v. Gore.  I was a kid, and didn’t have much perspective.

“Don’t worry,” he told me.  “There is a pendulum, and it always swings back.  Our democracy is built to be self-correcting.  Things will swing back.  Just wait.”

That sentiment has given me comfort over the years.  But this morning, the words ring hollow.

This morning, I am at another desk, at another job, writing furiously again, because this is the only way I know how to soothe myself.

But I am typing in 36 point font, because I am partially blind from the cataract in my right eye, which apparently developed as a result of the steroids I took during cancer treatment eight years ago.  Eight years ago, when Barack Obama was elected President.

So there is cancer, once again, still taking its toll on me, after all this time.  But I’m here, right?  Being here and half blind is better than the alternative, isn’t it?  In times of excruciating   challenge, I always check myself, and think of what I have endured to able to enjoy the gift of Still Being Here.

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My friends and colleagues are reeling this morning; each time a new face peered in my doorway, my eyes would well anew.  But as gutted as I feel, listening to their heartbreak, I found this faint, tickling hope stirring inside of me.  I listened to the fear in their voices, then tried to dig deep for some kind of light.  Maybe it is the survivor in me.  But in the face of seemingly insurmountable adversity, my instinct is to fight.

The stakes here are global, universal.  This isn’t about one lone warrior fighting for her life. But the lessons from that lonely struggle reverberate here.

A survivor friend texted me, “This isn’t cancer.  It’s a test, though.”

The test for me, in this sleep-deprived stupor, is trying to unpack and manage the raw hatred that so many people in this country harbor, and how to explain its prevalence to my brown-skinned son.

When I find some perspective on this national tragedy, I know this test will become not only manageable, but valuable.  Our job as adults, as parents, as caregivers, has always, ALWAYS been to show children how to love, be open, to show all other human beings kindness and respect.  What we will be charged with for the next four years is re-enforcing that essential truth ALL THE TIME, at every turn, in response to every hateful, destructive act that President Trump and his cowardly Congressional allies attempt.  We will wrap the truth of love in a powerful,  simplified civics lesson.  And our children will be so much stronger, smarter and more compassionate because of it.  The pendulum will swing back. It must.  Our collective humanity depends on it.

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balance regained: an annual event

The unconscious weight that bears down before a visit to the oncologist is never fully felt until after it dissipates, and the lightness of relief sets in.

Recent weeks have been a time of intense, measured breathing, of looking for space and patience, and seeking new directions for myself, and our family. The joint challenges of life with a four-year old and an ailing parent are pressing hard on all sides, and maintaining balance has been a full-time job. Trying to set out on a new career path in the midst of these challenges has in some unexpected way helped me clear the space I need for myself, making the hard parts of parenting infinitesimally easier. Overall, it’s been a rich stew of newness, and I’ve felt a burgeoning internal strength.

There wasn’t much mental space to perseverate on my annual visit to the oncologist this morning, just the continued breathing and mindfulness that my steady diet of yoga and running has afforded. Eight years exactly now since I finished treatment; cancer is in so many ways a distant memory. Or so I sometimes think, until that moment when I walk into the exam room.

I was treated at Penn, but now see my oncologist at Fox Chase, where she moved several years ago, and I only see her once a year. The familiar faces who monitored me all through the first stages of my recovery are absent; the campus is massive, and every time I go, I get turned around, looking for the right parking lot, the right corridor to my doctor’s office. It is wholly disorienting.

Enter the fluctuations of the mind. By the time I sat down in the exam room with the medical assistant, the balance I pride myself on had evaporated. My blood-pressure reading confirmed it: “Your pressure is a little high,” the assistant noted, sweetly, with just a touch of concern. “Do you get anxious when you come in?”

“A little,” I offered sheepishly, feeling exposed.

She tried the other arm; a bit lower, but still high. She offered some other suggestions: a salty dinner last night? Coffee this morning? (Oh, goddamn you, coffee.) But it wasn’t anything external, just my body betraying those innermost thoughts and fears, buried so deep in a daily routine and a search for purpose and direction that is all-consuming. Until this annual moment creeps up on me.

While the assistant ran through information on the computer screen, verifying medications and supplements, I felt my eyes begin to well, as they often do when someone outside my own head acknowledges the storms within it. I wiped my eyes and breathed deeply. After the assistant provided me with a gown and drape sheet, she left the room, leaving me to regain my balance while I waited for my doctor.

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Gowned and draped, I sat on the exam table with my eyes closed, rested my hands on my knees, joining my thumb and index finger. I matched the length of my inhales and exhales. Stillness set it.

After a few moments, the familiar knock came. She appeared from behind the curtain, like the magician she is. We shook hands, and, rather than jumping right into the exam while making brief small talk, she pulled up a chair and sat down, smiling, and started asking me about my son. The lightness grew, the weight simultaneously lifting. We talked and smiled, chatted about the differences between boys and girls, running, how I am feeling. Her kindness and presence felt like an embrace. She finally ran through the usual series of questions, then called for the nurse to begin the exam.

I lay back, looking up at the ceiling, as I have a thousand times before, and felt with a powerful sense of relief how completely okay it is for me to still carry these emotions, no matter how deeply buried they may be. This essential, unforgettable thing happened to my body and my soul, and the repercussions are endless, though faint.

I sat up as my doctor washed her hands and rattled off a few final details about follow-up. Breath filled my body. “You look fabulous,” she said, and came in for a hug. A real hug, filled with feeling. I squeezed her back, just a little. “It’s always so good to see you,” I said.

In spite of it all, it truly is.

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MOTHER COURAGE

The last few weeks have been a veritable flurry of activity on the “what the hell am I going to do with the rest of my life” front. Something has clicked over in me recently, as I’ve realized that it is time to start looking for change, to shake up the routines of the last four years. My boy is growing a feverish rate; I must, also. Stagnation? Forget it. Let’s shake things up.

I am quite determined to find work that I will feel good about. I’m reaching out to people, looking for opportunities that speak to me, that won’t just be about “getting out of the house.” Who knows where it will lead, but I’ve gotten more aggressive about it, which is an important step. I’ve embraced the idea that my rambunctious son is ready for some more outside influences in his life; the “all-mommy, all the time” formula is beginning to outlive its usefulness. When he was first born, it was the only way, the right way. But time has passed. So much has changed. Change: that’s the thing.

As part of my flurry, I got in touch with an old law school friend, who has been continuously doing incredible work ever since we graduated (18 years ago? How is this possible?) – including having a son of her own. She has been the head of the Philadelphia Commission on Human Relations for the past seven years: needless to say, she’s a bad-ass. I sent her a quick note, advised that I am plowing into a job search, looking to get back into the public interest groove. She replied promptly, with these words: “What great and courageous news.” It seemed a rather grandiose sentiment at first: “courageous?” Courage is something I generally associate with people doing things like, oh, starting bus boycotts or fighting fires.

maybe that's the thing

maybe that’s the thing

 

But then I thought, she’s right. This is a hard thing to do, and I am trying. And it does take a certain measure of courage to start putting myself out there again, after all this time. And it dawned on me very early this morning, after I read her words, that maybe, just maybe, there could be a Second Act for me, one that has the potential to be more focused, productive and meaningful than the first.

I inevitably think about my life in two discreet parts: Before Cancer, After Cancer. The Before part is largely a blur, at least the moments leading up to my diagnosis. It does, in many ways, feel like Someone Else’s Life. The After part, which has been going on for almost eight years, is also made of up little sub-journeys: the long road out and away from illness, to a place of some kind of strength and grounding; the path to our son; and the life we have led since he arrived.

Maybe, then, what is about to happen, is more of a Third Act: the unfolding that occurs now that I have breathed in every conceivable moment of Being Mom, of Constantly Doing for my boy – who fills my heart, who is the most delicious and amazing creature I have ever known – and I have realized that it is not only possible but perhaps essential that I start giving more back to the work of tending to my own self, and to the world I inhabit. This was always my driving impulse. This is the one thing that hasn’t changed, through illness, through profound physical and psychic transformation. Serve this troubled world; do the most good you can.

There is something to be said, I suppose, for having this framework, however complicated and painful, for understanding the narrative of my own life. My illness provided meaning that I might not otherwise have unearthed. When it comes to understanding what matters, there is no substitute for facing your own mortality.

When my son arrived, the vibrations were loud and clear: give him everything you have. Your heart needs it; he needs it. This is the moment you have waited and fought for. It was time to let go of a decade of professional frustration and devote myself to nurturing my own, miraculous child.

But now, four years later, the legacy of my cancer is telling me something else: you only live once, and you have to live for yourself, not just for your son. It is still possible, even necessary, to work and fight in the context of the world outside the walls of our home. The energy, the desire, that has always burned, to help, to serve, to fight – it is still there. And since I was lucky enough to survive, to still be here, don’t I owe it to myself to keep fighting?

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NEVER GOING BACK AGAIN

January: a benign but vaguely retched stew of prolonged family viruses, cabin fever, rescheduled birthday parties and post-holiday malaise. It is no wonder, then, that I decided to sit down for a job interview. You know, just to see what happens, to shake things up. My “baby” has somehow turned four years old. So maybe, just maybe, it is time to dust off my brain and see what I can do with it. Maybe it is time to begin the next chapter.

After some hemming and hawing – “I don’t want to work full time;” “I don’t want to go back to child welfare law;” “The pay stinks” (what public interest job doesn’t?) – I took the leap. Then, a few weeks ago, I sat down for a job interview, to return, ostensibly, to the same work I did for a decade. Let’s give it a try, I told myself, just to see how it feels. I walked through the frigid wind-swept streets of the city, from the train to the office, and felt just how long it’s been since I did this dance, every single day. The interview, pleasant enough, passed easily. My experience being exactly what they needed, I knew that they would call me for a second interview. There was nothing to be nervous about. For the first time, I knew that the job I was interviewing for was quite likely mine, if I wanted it.

Did I want it? The answer didn’t become clear until, as I rode the train home, I felt my anxiety rising. Stepping off the platform at my stop, the tears started rolling down my cheeks, my eyes hidden behind sunglasses. “I can’t do this,” ran on repeat through my rattled brain. But why did it feel so unbelievably wrong?

It wasn’t just the idea of moving backwards instead of forwards; it wasn’t just the idea of returning to this brutal work that stole so much of my spirit for all those years. In the end, it was the prospect of going back to the world that I inhabited when I was diagnosed; to seeing the same faces who watched me walk back into court, bald, pale and emaciated, after I finished treatment.; to the place where I scratched and clawed my way back into some kind of recovery, the place where I struggled and cried so many days as I waited for my son to come. There is such a legacy of pain there, so many dark moments. The thought of returning to that same environment was more than my heart could bear, for it felt so much like going back to a crippling space, the contours of which were completely defined by cancer.

Soon after the interview, I went out for drinks with a new friend who is also struggling to raise her kids while finding a new path for herself. We had never talked directly about my illness, but she was aware of it from reading my words here. After a few sips of strong whiskey, she offered, in a sweet and stumbling way, that it was on her mind. She wanted me to know that she was concerned about my well-being, if something came up…

There are always unfinished sentences when we try to talk about cancer. I told her what is true, that I am always happy to talk about my illness, and that while life has moved on in so many ways, there will always be the sense that It is right there, just over my shoulder, hovering, casting a shadow, however dim.

Returning to this part of my past is not an acceptable option. It is too fraught, too full of painful memories that literally seem to exist in three dimensions, like I could close my eyes and be right back there again, like it could all become real once more, if I made one false move. It does feel like a nightmare.

yup, i do

yup, i do

 

The good news is that I have the option to make a different choice, to wake up to another reality. I do not have to go back. Rationally, I know that I can’t actually Go Back. I cannot literally relive my illness. My diseased organs are long gone. My body is forever transformed, not just my heart and mind. But after all this time – eight years, it’s almost impossible to believe – there are still moments when rational thought eludes me completely, and something even so potent as panic can seep back in.

What I felt that day when I stepped off the train, back into the present for which I fought so hard, for so long, was this desperate clinging to the NOW, and to the possible. The shapeless unknown is terrifying in its own way; the limitlessness of “possibility” can bring its own kind of paralysis. But while I fear not ever finding my way, of lingering forever in this extended limbo of “full-time parenting” (will someone please come up with a better way to describe the work of a parent who isn’t employed outside the home?), it can never be quite so unnerving as the prospect of returning to my own personal Ground Zero, to the place where everything I thought I’d known was obliterated, left in ruins.

I am not naïve enough to think I can ever escape that hovering shadow that I described to my friend.  But I do know that, by choosing a path that goes forward, and takes me in unknown directions, I can at the very least help modulate the menace that it can often feel like.  When the call came, offering me the second interview, I gracefully declined, of course leaving out any mention of the real, muddled rationale for my decision.  It felt strange, and somewhat dishonest, but also inevitable.  For as cancer survivors, it seems, we can’t quite ever adequately explain the reality we inhabit, or the reasons for what we do.

Maybe this is why I write, over and over, about my illness and what it did to me, what it is still doing to me. Here, in this space, I can control the memories, I can safely unpack the moments which, when I am actually living them, feel like bundles of psychic destruction just waiting to detonate.

Forward, then. Never back.

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inhale; exhale

“They say the darkest hour is right before the dawn.” – Bob Dylan

Mornings, moments, scrambling toward something, have marked the recent days. Waiting for a switch to flip, for clarity to emerge, literally, from darkness. But it wasn’t until I stepped onto my mat, on the precipice of the Winter Solstice, that the light finally came.

It came, of course, at just the right moment, after a sudden and unexpected dip into gloom and uncertainty. A toe in the water of foreboding, of feeling like maybe things won’t be okay after all. But then: inhale what you need, exhale what you want to give to those around you. Oh yes. It really is that simple.

inhale_exhale_black_sanskrit_style_postcard-r12de6b18885f4940ae9f126740ae838e_vgbaq_8byvr_512The greediness of self-care is essential, most especially in the grander context of raising another human being safely, gently, with love. It just takes SO MUCH to create the best possible world for the little people in our lives. With this one boy – joyful, passionate, curious, sometimes wild – I can feel drained, steamrolled, sucked dry, even, when the storm is perfect and the outlets for self-expression and care are scarce. It’s been a confusing road to come to the place of understanding that this family, shaped like this, this one boy, parked squarely in the center of our hearts, our whole life, is just the way it should be, that any other way would be entirely too much. I might break. And a broken mother is not what this boy needs.

So I have breathed that in, over and over- every time I see him playing and chasing among friends and schoolmates, almost all of who share their little worlds with brothers and sisters. It’s a wonder to me. I marvel at parents who can make this work. Sometimes, I feel judged, or out of step with something that I am supposed to understand. The world wants me to do this differently. But then I breathe in what I need.

What else, besides this close, small family, perfect with my curly-headed boys? An ocean of words, swirling around me, all the time. My own, those of others. Right now, I am inhaling Kate Atkinson’s magic so deeply. Like the Incredible Book Eating Boy, I wish I could sit down with a knife and fork and literally feast on “A God in Ruins.” Instead, I’m breathing in her language and story as fully as I can, just so thankful to know what it means to me, how it nurtures the part of me that feels like Teddy, her protagonist who is struggling to make meaning of his Life After War. His struggle feels in some essential way like my own, trying to live and make meaning after illness. What do we do with a future that we thought we might never have?

Also, running, literally inhaling the freedom it brings.  Starting to share it for the first time with friends, and share it again with loved ones, feels like a gift to those around me. Each stride has provided strength, focus, a certain elation that I can access even in the darkest moments.

And then, what to release back into the world? Days, weeks have gone by, mired in the clenched-up combativeness of parenting, when I’ve literally lost sight of who I am, where nothing seemed possible, where my heart felt frozen in disgruntled rage. That is not what I want to give to the world. That is not the kind of parent I want to be. What I want is to share something lighter, sweeter and more joyful.

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For reasons perhaps too numerous to identify, I’ve had to let go of certain ancient notions of how I might improve the world in some small way, of where I might “end up.” The civil rights litigator I imagined being at the dawn of law school; the author whose words reach into people’s hearts and shed some kind of meaningful light. These expressions of self may never come to be. But in a sweaty steam bath of inhales and exhales, of 108 salutes to the sun on the darkest day, the clarity came: that being the best version of who I am need not shake the earth in some grand, seismic way. Vibrations of simple goodness just may be enough.

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the only safe place in the world

There will come a time when my son isn’t waking up each night, stumbling towards mommy or daddy, and whimpering that we climb in bed with him to get him back to sleep. Invariably, one of us ends up spending most of the night with him. Last night, it was my turn.

I slipped under the covers at around 10:30; thanks to the magic of valerian root in my evening tea, I’d actually fallen asleep in my own bed about an hour earlier. I stumbled into his room. He hooked himself onto my shoulder, and off we drifted. I’ve given up trying to escape from his tiny clutches, and have begun surrendering to the particular loveliness of sleeping beside my child, – even when I wake up intermittently with half my body spilling off the bed, even when his long legs kick me or his slender arm flings across my face in a half-conscious twitch. These are moments that I know I will long for one day very soon. Rather than fighting them, I am learning to drink them up.

When we rest together, there is peace and comfort and this ineffable magic of mother and child, entwined in so many ways. Our waking hours are too often rife with battles, raised voices, tears, inevitable at this stage. But in our resting state, we silently breathe together, the rhythm of our love rising and falling in sync. In the harsh, unending daylight, I sometimes fear that the dark side of our complicated relationship will overwhelm the light we create. In the dark, in silence, I can simply run my hand through the soft dark curls on his perfect head, and transmit the power of my love for him, wordlessly.

The struggle of growing up makes everything a constant lesson; commit this infraction, learn this. Engage in that act of defiance, suffer this consequence. You must learn. Over and over. It exhausts me; I can only imagine how it must tax his spongy brain, ever-absorbing, ever wondering. I try to hold his gaze as my voice rises; I aim my finger at him to stress my point. “Do you understand?” A hundred, a thousand times a day those words escape my lips. He is trying, all the time, even though he often doesn’t show it.

“Yes,” he will spit out, in exasperation, turning his head away from me, and I hear a silent, “Geeze, moooooom,” following.

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“Get away from me!” “”Go away!” These words fall around me in a never-ending cascade, a waterfall of his disdain. I know he is testing, pushing me, finding limits, and that five minutes later, when he bumps his head and the tears come, he will fall into my arms as if they are the only safe place in the world. Still, they sting. Maybe it is the added anxiety of the adoptive parent; as he grows, his love will diminish. When his story is revealed to him, he will pull away, and seek his true self.

All you can do is love them; the rest will sort itself out. A wise friend, also an adoptive mom, shared these words with me at the dawn of the infamous toddler phase. When the anxiety creeps in, the fears of what might come next, I come back to them, and burrow deep inside their meaning. It is the only safe place in the world.

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until the end of the world

From the universal and far-reaching, to the personal, the claustrophobic; such was the journey of the past seven days. One week ago, I sat down to release thoughts that I didn’t even know had been gathering; I shared them with the world, and to a greater extent than usually happens, the world answered back (at least my smaller corner of it) with warmth and compassion and connection. Virtual hugs and “amens” and other cries of common understanding spilled forth, and I felt buoyed, like writing has some meaning, and can serve a larger purpose. It’s a truth I know, which rests at the center of who I am, but which often gets lost in the shuffle, or shadowed in doubt. Cries of self-indulgence and vainglory. But one week ago, the power of words surged through me. I felt like my best possible self.

The next day, the world collapsed in on itself. In the grander scheme of things, the challenges were minor, seemingly not worth mentioning. My son was diagnosed with a mild case of hand, foot and mouth virus; I came down with a head cold. Contagious but not really feeling sick, my rampaging almost four year old was consigned to spend one of his usual school days at home – with me, of course, as congestion clogged my mind, a cough rattled my throat and a low fever simmered – just enough to make me feel depleted, not up to the usual tasks of parenting my wild boy.

The minutes passed like years; the days like eons of unspeakable tedium and exhaustion. The horrible wonders of climate change allowed us a fair amount of time outside, raking leaves, walking the dog, going to the playground. But our routine had been capsized, close social contact was prohibited, and by the end of our third straight day together without reprieve, I found myself a weeping mess over a maudlin dinner of Trader Joe’s chicken pot pie, as my son angrily demanded that I read him “Anansi Goes Fishing” for the hundredth time that day. I was defeated.

“I can’t,” I blubbered, tears falling onto my dinner plate as he waved the book in my face. I meant it in some larger existential way than my highly-attuned four year old could understand. I literally could not do anything in that moment. All of my efforts as a parent, all the love I have poured into my child – none of it was enough. He and I were adrift, lost in isolation while his virus ran its course, without so much as a nap in the middle of the day to spell some kind of relief.

A few days confined with a contagious four year old, while I battled my own mild ailments, cannot compare to the seventh months I spent isolated in my home during cancer treatment. But the flavor is similar enough, the feeling of disconnection reminiscent of those endless bleak days, such that on top of the other battles I was fighting – with my son, with my own absurd head cold – I was left to once again fight off the fear that I will never completely be free of that cage that surrounded me, long years ago that still feel like yesterday.

In the midst of the dark week that was, I also learned that I was not to be hired for a part-time legal writing job that I found myself interviewing for completely out of the blue, the week prior. On a Wednesday morning when I would normally roll out of bed and pull on my yoga clothes before heading to class after dropping Earl at school, I instead pulled on stockings and a dress and hopped on the train. I walked into the beautiful office of one the city’s most successful plaintiff’s personal injury attorneys, and had a very congenial – almost enjoyable – conversation with him and one of his associates, and talked about their needs, my skills, and the time I had available to help with their massive overflow of legal writing. It’s work I’ve not done before, but I’d been feeling the urge to engage my mind a bit more fully, to perhaps even use some of my dormant legal skills, so when I learned of the opportunity, I decided to give it a shot. My husband cheered me on, and I approached the meeting without the usual nerves and insecurity that marked almost every other job interview I’d ever been on.

I left the meeting feeling excited but scared – wondering how I would manage my time if they actually hired me, worrying that I would struggle to navigate an unfamiliar practice area. But more than anything, I was proud of myself for taking this first plunge back into the possibility of the work world. I told myself that either outcome would be perfectly acceptable. I had nothing to lose.

A week passed, and I didn’t hear from the office. I began to consider the possibility that they might not contact me at all; I became quite certain that either way, they were not going to offer me the job. So when the email came last Thursday – after almost three grueling days with my son – I was unsurprised. But in the irrational trap of my isolation, it smarted anyway. The explanation given was that the firm had hired a full-time attorney; they were concerned that the time I had available wouldn’t be sufficient for their needs. Fair enough.

My son returned to school, mercifully, on that Friday. Despite the tears and rage, we both survived, and once free that morning, I laced up, despite my lingering cold, and pounded out six miles that felt completely essential. Along those miles, I was free to consider, for the first time, in what felt like an eternity, this notion of my time. The time that I do have, for myself, for my son, for the world I want to make better, for the people with whom I want to connect.

At the end of my run, I came across my neighbor around the corner – a new friend, the mother of two boys , one just about Earl’s age, and it turns out (not by coincidence, because I no longer believe there is such a thing), also a writer. We are slowly getting to know each other, in that unique way one does when building a friendship as a full-blown “adult.” While our boys play (and fight) we have found small spaces in which to connect.

We talked at the sidewalk’s edge, her boys packed into their coach, bundled up despite the unsettling December warmth (she, like me, finds these temperatures frightful and disturbing), and laughed at our shared frustrations with our boys. I told her of the week that was; her sympathy was such a comfort. As we parted, I told her that I’d read her recent post about recommitting to her writing. She has committed to finding space to write 150 words a day; her commitment has shined a bright light on what matters to me. She is inspiring me.

One night last week, in the midst of the struggle, I dreamed about participating in a spelling bee of sorts (inspired, no doubt, by endless readings of Jon Muth’s gorgeous children’s book, “Zen Ties.”) Like so many dreams, it was more about a feeling than actual events – in this instance, the fact of the spelling bee seemed simply a vehicle for this euphoric relationship with WORDS. There was no actual spelling in the dream (how well would I do, anyway?) There was just this ecstatic sense that I am about words.

Connecting with other people who are also about words, who are committed to the arduous and inward work of writing, has given me a kind of permission that I’ve heretofore felt I was lacking. My sweet friend in California, bought back into my orbit thanks to the wonder that was our high school reunion, shines another light on what matters to me. Her words are constantly flying through space, across miles, burrowing right into my heart. Her passion to find meaning through words has reignited my desire to do the same.

But: time. It is finite, in more ways than one. Have I lurched into middle age without even realizing it? Have I wasted endless hours and days with errands, laundry, household nonsense, hours that I could have devoted to discipline, to words?

I went to bed last night with a commitment to start anew, to seek focus, to try on some of the discipline that my two friends – one very near, one a continent away – are inspiring in me. Last week is gone; we have come out on the other side. It’s time to begin again. I will not waste the time I have been given – in the moments right before me, or in the days and weeks and years that may stretch ahead.

TRY NOT; DO OR DO NOT; THERE IS NO TRY.

TRY NOT; DO OR DO NOT; THERE IS NO TRY.

So today I woke in darkness, to run, to allow myself time later in the day – the few precious hours I have while my son is at school – to take refuge in words. This December morning, thick with fog, air heavy with humidity, felt peculiar, almost apocalyptic, but also right. Shorts and short sleeves with my running shoes; Christmas lights shrouded in mist. Everything seeming upside and confused, except my purpose. Run. Find space. Make time.

When we find ourselves in full-on battle mode with our boy – when his irrationality soars off the charts and he seems utterly out of reach – my husband talks about “losing the will to live.” He says it half-jokingly, but there is an essential truth to it, the feeling that the struggle is simply too much. Last week was like that, for days on end.

But in the fog this morning, something beautiful threatened to emerge out of the obscurity. It’s possible to pass through these challenges, these weeks filled with tears – or those long-ago months, trapped in a house, warding off disease, clinging to life. With support and inspiration, life can be reshaped, re-imagined. We do not have to be swallowed whole by any one thing that happens to us, by any one part of our identity. The will to live is more powerful than we know.

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STAYING ALIVE

We are hurtling toward the Christmas holiday; Hanukkah began last night. But the sun is warming us in what feels like another extended summer. As my son grows, will he ever know the joy of a snowy winter morning? Humans everywhere are finding new and horrifying ways to harm each other, to spread fear. And all my four year old wants is to play with his new Land Rover and trailer from his Mom-Mom. Never have things seemed so simultaneously simple/beautiful and complicated/terrifying.

The world is swirling with minds trying to make sense of this confused new place. I feel friends leaning into each other a bit more urgently. I feel the anxiety tugging at us all. It reminds me of the tsunami of fear that washed over me exactly eight years ago, at the moment of my diagnosis, but this time, it feels universal, like we are all afraid of being washed away together, in some kind of mass erasure of our shared humanity. Paris, Colorado Spring, San Bernardino. Every day, everywhere. At least with my cancer, there was a contained root of evil. It was cut out, toxic drugs were pumped into my body. I was torn down, then reborn. But in this moment, how can we even identify the source of what threatens us? How can we possibly stem the tide if we don’t understand the seismic nature of what is erupting underneath?

This is not a place one can afford to dwell for any length of time. Not when there are children in our lives who need our constant steadiness and reassurance. Not when we are charged with the awesome responsibility of helping them grow and understand the mystery of everything around them. But last week – last week was filled with moments of real struggle. The evening ritual of listening to NPR while preparing dinner became untenable. Earl, so very attuned to everything around him (he really does listen to the news, some of the time), heard selected words about San Bernardino, and proclaimed, with a big smile, “California!” He knows it as the sunny place where we visited his cousins last winter, not the site of unspeakable carnage. Off went the radio. I immediately redirected our focus to play.

When my son was first born, I thought so much about wanting to shield him from the reality of my illness, about how it figures in my history, in the story of how he came to our family. But the fact is, my illness is a part of his story, for without it, he would not have come to us. So one day, perhaps not too long from now, the frightening legacy of cancer will be made real to him. It is an unsettling thing, to imagine opening up this part of the world to him, but it is known and understood, and we will handle it together, and grow as a family because of it.

Now, I think about wanting to shield him from a much larger reality, one that touches us all. I imagine the low-level anxiety that will creep in when we head to the airport to visit his grandparents in a few weeks. Every public place now holds some kind of threat, could be the sight of another mass murder. I do not want my son to grow up in a world where this is always true. This is unacceptable.

And yet, it is. It is accepted. A collective numbness has gripped us all. Chemo destroyed nerve-endings in my feet, left me with a lingering peripheral neuropathy. I can only hope that terror and violence haven’t similarly deadened our hearts and minds. We have to find another way. We must fight to stay awake.

never more exhausted, never more alive

never more exhausted, never more alive

Two weeks ago, I ran my second marathon, shaving over an hour off of my time from two years ago. Strong, steady weeks of training made it possible, along with the matter-of-fact belief of a new, incredible friend (who is not coincidentally, also a cancer survivor.) Running has become freedom for me, but completing a marathon is a special kind of insanity that is hard to explain to people who have never done it. Not unlike trying to articulate the feeling of being diagnosed with cancer to someone who has never had the experience. But now, in the calm after the race, now that my body has recovered and I can start imagining the next challenge, I understand more deeply what drives me in this way. The exhausted flush of BEING ALIVE that comes at the end of those 26.2 miles has so much meaning – after cancer, after Paris, after San Bernardino. After every single moment somewhere in the world where people want to bring each other – bring us all – to an end. And that life force is greater than any death that threatens us.

Stay alive, as big and as beautifully as you can. And one day, this madness will end.

Posted in adoption, Death, fellow fighters, running | 1 Comment

we are real: for radnor high school, class of 1990

Earlier this morning, I laced up and hit the trail after dropping my son off at school. It was a gorgeous fall morning, my favorite for running. My sleep last night was fitful, as faces and voices from Saturday night’s 25th high school reunion filled my mind. Despite my exhaustion, skipping the run was not an option. It seemed right, actually, that my last long run before the marathon would happen under these circumstances; I needed to complete the catharsis that unfolded over the weekend.

The first few miles were spent on a secluded path along the trickling end of the Cooper River. The path ends at the base of one of the few hills in the area, a long, slow ascent that runs right past a local high school. Exposed now, out of the wooded sanctuary, I spied out of the corner of my eye a high school kid sitting in a parked car. With the bleak strains of the Decemberist’s “Annan Water” in my ears, I literally felt my heart strings being pulled. I never knew what that meant: “Heart Strings.” But I ran past the high school, in the direction of my son’s pre-school, and the aching in my heart was so real I thought I would burst. The (final?) waves of emotion stirred by reunion night came swelling up, and the tears flowed once again. All of the adolescent emotion, frozen in the face of the unsuspecting boy in the parked car, and doubtless teeming through the halls of Haddonfield High School, was raw and renewed, and bled right into the wonder and fear of parenting, of middle age, of where so many of us now dwell. These strings were pulling me right through the past, into the present.

For a moment, I thought I couldn’t go on. Running felt impossible. I had many miles to go. Suddenly, the crisp morning gave way to a blazing sun, and I felt myself melting. Was I possibly overheating on a 45 degree morning? I imagined sitting down under a tree on the brick sidewalk, sobbing, as construction workers milled around me. What is wrong with her, they would wonder?

But I didn’t sit down, and I didn’t stop. I breathed more deeply. The incline resolved into more forgiving flat terrain, and within a few moments, I knew I would be able to continue, now a bit lighter, perhaps having left the last of these tears in my wake.

There had been a premonition of sorts, in anticipation of this peculiar past weekend. This was the first time I’d ever allowed myself to be so fully submerged in the reality of time passed. But for me, and for so many others, it wasn’t just about the passage of time. It was about facing a present that looks so very different than you ever thought it would. It was about sharing the journey that brought you to this place – sometimes deliberately, with a measured caution, and other times with a tear-soaked abandon that was probably only partially the result of one (or two or three) too many glasses of wine.

Sisters in the fight, together at last

Sisters in the fight, together at last

 

It was one thing to approach the prospect of a 25th high school reunion with a light-hearted sense of curiosity and amusement. It was something else entirely to enter a room filled with so many familiar faces, and to see time written on all of them. In those first adrenaline-laced moments, I could only sense the surreal. But before long, the inevitable began to unfold: my cancer brothers and sisters found me. There were unending hugs and tears. This huge, incredible reality, of touching other wounded spirits, and seeing how desperately we need (and help) each other fairly knocked me over. But not once did I feel self-conscious, or wonder, “What must people be thinking?” It was the most beautiful polar opposite of everything that marks adolescence: insecurity, fear of exclusion. Everything was real and completely exposed, at least for me, and for those I know have been fighting there own battles, or have lost people, or perhaps almost lost themselves. Those who I’ve held close through all these years were at my side, buoying me, keeping me grounded. Others to whom I have grown connected in the intervening years shared a new kind of love and empathy, borne of our adult struggles and the realities we now inhabit.

These people.

These people.

 

When I met and embraced one of my far-flung soul-mates, whose light and passion and brilliance I never understood fully when we were kids, she held my arms, looked me in the eye and said, so sweetly, “You’re real!”

We live in a world where so much is virtual, and thus attenuated. This past weekend, there was nothing but the unvarnished immediacy of human spirits, living, breathing, making each day into something, and hoping – sometimes against hope – that after this day, there will be another, and another, and that through all of them, we will find a way to hold on to each other.

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from revolution to evolution: belated thanks to the boys

Four years ago, I wrote with some fairly measured seriousness about the transcendent experience of finally seeing U2, my favorite band of 30 years, up close. At that moment, I was still living in the relatively immediate shadow of my cancer diagnosis and treatment, and everything was felt and gauged in relation to that life-altering trauma. This past July, I spent another evening with my same heroes, and this felt different, maybe more poignant, for any number (or combination) of reasons.

Bono, rebuilt

Bono, rebuilt

 

These words echoed through my head as I hung off the rail by the e stage at Madison Square Garden on an unforgettable summer night: Thank you for growing old with us. I’m not old, and they aren’t either, by many measures. But time and coincidence have not necessarily been kind to us, to one degree or another. Bono, the bionic man. “We have the technology; we can rebuild him.” Up close, those few feet out of reach, I could see the rigidity and change in his body after all it has been through. He is changed, not just by time, but also his own recklessness. Time does strange and sad things to us all. We just don’t always expect to see evidence of it in our imagined immortals, or those at least larger than life. In the end, we are all diminished. Often times in increments, but sometimes through transformative trauma. (I know a bit about this.) If we are lucky, we have the chance to rebuild a little bit, to stem the tide.

In the glow

In the glow

 

So, to them, I say again, thank you for growing old with us. Thank you for allowing your sentimentality and your struggles with your own past to seep through, and touch us all. In the end, there is no difference between your struggles and those of the folks on the other side of that rail – save for the magnitude of the canvas upon which you seek to resolve them. Your gifts, your talents, are out-sized, perhaps mostly because the way in which you so artfully use them to help us all find common ground. It is the same unifying magic that has always marked what you do, but now, with the added, ironic twist of the finite.

You have taken me from the hardest part of my childhood, all the way to motherhood. Perhaps that is why the sense of youth – lost, regained – hit me so hard on that night in July. Why the keening to a long-dead mother felt so raw. We have travelled from revolution, to this evolution – of the heart, of the individual – marching through time.

Posted in cycling, Death, Life After Cancer, music | Leave a comment