HALLOWEEN/WORLD SERIES GAME THREE

It was a brutal night for the Phils, but we had huge fun with the gang (including Lucy and Marley!) in Narberth.

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the unfolding

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Aiming for a snapshot of the weekend, hoping to convey some measure of the love and energy which First Descents generates, I’ll start right here – me and Flippy Floppy, after the Alan Goldberg Walk for Life in the far reaches of Rock Creek Park, clowning, and holding on tight.  I love this picture because to me, the purity of the joy we all share with each other fairly leaps from the frame.

The weekend was, predictably, a blur, but a delightful, rejuvenating one.  I came out of the Ballston Metro station yesterday afternoon into a torrential downpour.  The air was saturated, my clothes sticking to me.  I ran out into the rain, skipping almost, hailed a taxi, and ten minutes later walked into the Arlington Cinema and Draft House, to find Brad on-stage, describing First Descents, talking about the campers who were present that evening.  “And here comes another one,” he added as I entered the theater, and moments later Huggles popped up and wrapped me in one of her trademark embraces.  It was good to be home.

New bonds were formed, also as expected, almost immediately, with campers from other programs. Before First Descents (read: before cancer), I had never had the experience of meeting people and in an instant, feeling completely at ease and understood.  But with these people, in this universe, it is virtually a given.

I had the great good fortune of sharing this exhilarating 24 hours not only with my new family, but also with one of my oldest and dearest friends.  Kate and I love to tell people how we have known each other since fourth grade (if pressed for details, we’ll even talk about the class we took together at the Wayne Art Center in the summer of 1981).  Few relationships endure like that, but Kate and I have remained connected across years and distance – a fact for which I am always grateful, and which I never, ever take for granted.

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It sometimes feels like my life is neatly divided:  Before Cancer, After Cancer.  Kate, who has known me longer than almost anyone, and has remained constant through it all, walked with me today in Alan’s memory, along side my First Descents family.  On that path in the woods, I felt a new sense of completeness, of wholeness, of all of my life flowing together in one continuum.  There is a fluidity, a rhythm to my experience, and I get to claim all of it – the innocence that existed before my illness, the fear and uncertainty that threatened to consume me, and the joy that is now unfolding.

It all belongs to me.

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something about changing clothes in a public restroom…

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And from aboard the train…

Right now I am having this great fantasy of being a traveling advocate for First Descents.  I will be riding trains (fast ones, please, with wireless), planes, unfolding my laptop, putting down yet another round of thoughts about FD and what it has done for me.  Clearly I will need some snazzy luggage, and some cool, wrinkle-free travel clothes, so that when I arrive at my destination and have to change in the bathroom before a speaking engagement, I’ll look pressed and good as new.  And ready to rock.

Not quite sure what this 24 hours in the DC area is going to hold.  In many ways, it doesn’t matter; at least I know that it will be good, that it will have that certain FD flavor that just can’t help but happen when any number of us are met in one place.  It makes me think of my old improv teacher, and her observation that “people are like chemicals,” and that, sometimes, incredible reactions can happen, depending on how the chemicals are mixed.  We from Jackson had that added, secret ingredient – cancer – but there is no denying that there was a chemical reaction that happened for all of us, that the climate and atmospheric pressure, the direction of the wind, all contributed to the beautiful explosion of life and love.

Is it possible that I am still high from all of this?  Is this going to wear off at some point? Will I one day experience a truly “bad mood?”  Will the winter doldrums eventually overtake this spirit that Jackson generated, and which continues to roil inside of me?  It propels me out of bed each morning.  It energizes me when I deal with the frustrations and disappointments of my professional life.  It is quite simply driving.  Toward what?

I told a few people in Denver that I would do anything for First Descents.  As I step back and look at what I am doing right now, it seems plain that that is true.  I actually cancelled a planned visit with my nephew – totally unprecedented –  to spend a few hours with the crew in DC.  How could I resist Huggles’ and Stepmom’s pleading emails?  How could I pass up an opportunity – how will I ever? – to do something for this group?  I owe them everything.

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“we’re just getting started”

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Thoughts as I waited to board my train to Washington, DC yesterday afternoon:

Clearly, there is some kind of gravitational force pulling me down to the DC metro area this afternoon – a wet, lazy Saturday when I would otherwise most likely be lying around the house, reading, hanging out with the pets – maybe, if I were feeling particularly motivated, heading over to the gym for a run, but certainly nothing more arduous than that.  Instead, I am parked at 30th Street Station, loving the Cosi wireless, thinking, once again, about First Descents.

The emails came last week, from an FD figure I have yet to meet:  “Stepmom.”  Come down to DC next weekend, she urged.  There’s a fundraiser at my house, a screening of a documentary about the program and a memorial walk in honor of Alan Goldberg, the former FD executive director who passed away last year.  Oy!  Didn’t I just get back from Denver?  Hadn’t I already invited my sister and nephew down for that weekend?  What is happening to me?!?

Of course, the evening I received Stepmom’s email, I had the good (but also rather unexpected and sudden) fortune of meeting up with Hottie Bucks, fellow Jackson camper and just all-around awesome soul.  We spent two hours blabbing over some beer and wine, and, as with everyone with whom I shared Jackson, there was this tremendous sense of connection, of purity of emotion, that just over-took me as soon as HB and I sat down at The Good Dog.  It’s an amazing thing, leaving me intoxicated, empowered, each time my own psychic orbit crosses paths with that of another FD’er.

So, after a few days of ironing out logistics, it’s off to DC I go, to hang with Huggles, Flippy, B. Rad and Chunks.  And Stepmom.  And who knows who else.

I love this new family so dearly.  And the funny thing is, as Double-Oh texted me right after we parted company in the Denver airport at the end of camp, “We’re just getting started.”

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still champions: a look back at the ’08 phils (and emily)

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Last night – sometime after 2 AM Eastern Time – my beloved Phillies pulled out an extremely improbable win against the Colorado Rockies in a pivotal Game Three of the NLDS.  I finally drifted off to sleep just as Matt Stairs struck out with two men on to end the top of the eighth, and at that moment, I will confess, my hopes for a win were all but snuffed out.  But when the alarm went off just a few hours later, I was stunned to learn not only that the Phillies had prevailed, 6-5, on a ninth inning sacrifice fly by Ryan Howard (“fuck yeah!”), but that much-maligned Brad Lidge had in fact, as Scott Franzke put it, “walked the tight rope” to preserve the win.

Now, then, seems an appropriate time to republish something I wrote at this exact moment during last year’s playoff run, as the Phillies were fighting their way to their first World Series title in 28 years.  For me, and for the Phillies, things look much different now than they did a year ago.  Then, it was all about beating the odds.  Now, it’s about finding a way to sustain the notion that they  – we – are still champions.

Many of you have probably gathered by this point that, well, I love baseball. No, I don’t think you understand: I REALLY love baseball. I always have, ever since I started going to games at the age of three. I inherited my love of the game from my father. Who knows why I got the baseball gene and my sister didn’t. Maybe for the same reason I got the cancer gene and she didn’t.

The Phillies teams of the ’70’s, when I first started going to games with my family, were fearsome, powerful and made the playoffs for many successive seasons. When I was 8, in 1980, they won their first and only World Series. And the city has been waiting for another Championship Season ever since.

Last year, for the first time in 14 years, the Phillies made it back to the post-season. The city was jubilant, and I wept at the final out of the last game of the season when they clinched the division. The team then quickly flamed out in three horrific games in the first round. End of dream.

Two months later, I was diagnosed with cancer. Forget baseball. Forget just about everything, thanks very much, and save my life, please. Christmas, New Year’s – surgery, followed by more surgery. It was a bleak winter. I have always disliked the winter months, in part because of the absence of baseball, but last winter, well, that was a shit-storm of an utterly new variety.

Chemo started in February, the same time players reported to Florida for Spring Training. I quickly adorned my “cancer book” (a giant three-ring binder containing the endless piles of paperwork associate with my illness) with a local newspaper cover featuring my favorite Phillie, wily, wizened left-handed pitching illusionist Jamie Moyer – at 45, the oldest player in all of baseball. His Zen-like, clear-eyed intensity fast became a source of inspiration and motivation to me as I battled my disease. One pitch, one day, one treatment, one game at a time. Statistics are meaningless. Make your pitches. Keep your opponent off-balance. Defy expectations. Block out the noise. Follow your Third Eye. What works in baseball so often applies to life in general – and fighting cancer in particular.

The season unfolded, with the Phillies starting strong, but, as always, giving their fans plenty of reason to doubt them. Then, a few months in to the season, something strange happened. My father, sick with pneumonia while his wife and daughter underwent chemo at the same time – a dark time for the family, needless to say – prophesied that the Phillies would make it to the World Series this year. When I heard him say this, I chalked it up to the fevered ramblings of a man under a great deal of stress. Get some rest, Dad. You’ll feel better soon.

As the season wore on – ups and downs, winning streaks followed by losing streaks – so did my journey through chemo. The roller-coaster rocked me almost every day. I reported for treatments always carrying with me a baseball signed by Jamie Moyer, and as the drugs coursed through my body, I ruminated on his attitude toward the game, and made it mine towards cancer. Statistics are meaningless. Make your pitches. Block out the noise. Baffle your opponent. Stay in the moment.

The Phillies were briliant in May, and wretched in June. I was wretched most of the time. But we were on the roller-coaster together, linked in some kind of karmic dance. My dad’s premonition was always in the back of my mind: The Phillies will make it all the way. And so will I. Chemo ended in June, and the rebuilding began; an entirely new struggle, but I fought on, enduring ever more highs and lows. Just like my team.

The end of the season closed in, with the Phillies hanging on to a slim lead in the division. Last Saturday, September 27, they needed one more win to clinch the division and advance to the play-offs. I was there. Jamie Moyer was on the mound. Buddha, God, Allah – whomever – they were all looking down on Citizens Bank Park, smiling knowingly.

Jamie was brilliant, pitching in his inimitable, Zen-like way, and the Phillies, after a tumultuous ninth inning, emerged victorious and clinched the NL East Division Championship. The first step along the way to – just maybe – fulfilling my dad’s premonition.

After the you-had-to-see-it-to-believe-it double-play that ended the game, the ballpark erupted. Fireworks went off. Rally towels failed. Neighbors hugged. And amidst all of it, I started to cry. I felt the long, tortured season – my season of cancer and chemo, the Phillies’ season of parallel ups and downs – come rushing at me. I thought of my dad’s premonition. I thought of the wisdom of Jamie – how I tossed his signed ball in my hands as I lay in my hospital bed during my seemingly endless over-night treatments. I thought of how hard I had fought over these many long months, and how far I had come.

My dear husband look over at me, saw the tears in my eyes, and gave me a huge smile. He hugged me for all he was worth, and I knew he understood.

Now, it is almost one week later, and the Phils are one win away from moving on to the National League Championship Series. On the one hand, given their hard-luck history as a franchise, I can hardly believe it. On the other hand, I feel quite strongly that this year, of all years, we – my beloved team and I – are destined to be winners.

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ode to orianna

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Mike drove up to the Bronx with his father this afternoon, and is currently parked at Yankee Stadium, watching what appears to be a pretty remarkable baseball contest.  I plowed through my day, nose to the grindstone, being uncharacteristically productive for a Friday, and actually kind of looked forward to coming home and having some time to myself:  a quiet dinner, some reading, some writing, a glass of wine, bed.  But as I rounded the corner of Poplar and Orianna this evening at about six o’clock, I encountered what I imagined I might:  on this unseasonably warm October evening, my neighbors (both sides) congregating on the (collective) front steps, sharing laughter and cocktails.

We exchanged the usual pleasantries, extra-pleasant thanks to the liquor-induced lubrication, and I was quickly invited to share an evening of pizza and conversation.  I then entered our house, hooked Lucy to her leash, and set out on the familiar streets of Northern Liberties for our after-work stroll.  I love this neighborhood.  Its quirks, its trash, its off-beat character.  And I love our neighbors.

Over a slice, after someone inquired as to the status of our hopes to buy the house we’ve been in since 2006, I mentioned that we are hopefully close to relocating to the (extremely near-by, but suburban, nevertheless) confines of a certain town in South Jersey.  There was a time – you guessed it, “before cancer” – when the thought of leaving this idyllic urban enclave would, quite literally, bring me to tears.  As soon as we set up here on this magical block, I was convinced I never, ever wanted to leave.

But once again, reality interferes.  Economic realities; social realities.  Now though, while I will certainly leave this special place with a heavy heart, I also know that we are resilient, adaptable, and that we will find and nurture happiness wherever we go.

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remarks delivered at first descents fundraiser, denver, co, 10/1/09: the miracle of humanity

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What follows is a slightly more formal version of the remarks I delivered in Denver, CO last night at the First Descents fundraiser at the Museum of Contemporary Art.  It was a magical night that reenforced my commitment to this remarkable organization and the work it is doing to restore strength and dignity to the young adult cancer population.

When I packed my bags for Jackson at the end of August, I had no idea what to expect.  I knew the simple facts:  I would be rock-climbing with other young adult cancer survivors for a week.  It sounded challenging; I did not expect it to be life-changing.  This in spite of the fact that the few other people I had spoken to about their experiences with First Descents did in fact say things like, “It will change your life.”  My own natural cynicism, and perhaps some of the hardness resulting from my experience with cancer, kept me from believing that First Descents could really be “all that.”  Cancer had changed my life; I was not prepared to undergo another radical transformation of my sense of self and my place in the world less than two years after being diagnosed.

So much for that.

One of the hardest things about being a young adult with cancer is feeling completely and utterly alone.  That there is no one else like you, no one else who understands what it means to be young, vibrant and dreaming of your future at the exact moment your oncologist tells you that you have cancer.  In our chemo suites and doctors offices, we are easily decades younger than most of the other patients.  My hospital – a renowned cancer center in a major urban area – never even offered an in-person support group for people my age, but rather insisted that “we” preferred to make connections virtually.  When you are a young adult, everyone in your life has a cancer story, but usually those stories involve an elderly relative, not a best friend from high school.  As young adults with cancer, we are made to feel invisible.

So when I boarded my plane from Denver to Jackson, I immediately took note of my fellow passengers and tried to pick out potential campers.  Sure enough, it happened, and as soon as I spotted Fiery – with her red hair, just growing in post-chemo, and the “Stupid Cancer!” button affixed to her backpack – I was comforted.  Finally, I thought to myself, I am going to be surrounded by people like me, people who will understand my fears and frustrations, my sense of isolation.  Finally, I am not alone.

At baggage claim in Jackson, I was magnetically drawn to an incredibly nice-looking group of young people standing in a loose circle.  After hesitating a moment, I approached them.  “Are you, um….?”  I made eye contact with a tall, slender blonde woman.

“Hey, yeah, who are you?”

“Emily?,” I said, suddenly uncertain.

“Oh great, hi, I’m Huggle Bumps.”  We shook hands, and she gestured to a handsome man across from her.  “And this is Flippy Floppy.”  I struggled to process this information.  My face undoubtedly registered my confusion.

Suddenly, the others gathered started to introduce themselves.  “Hi, I’m Slow Boat.”  Excuse me?  OK, I was with a bunch of people with cancer, which was great, but I was beginning to wonder what exactly I was in for.

When we arrived at Teton Science School, our home base for the week, my nervousness manifested itself in the form of irrational thoughts like, “I never went to overnight camp.  I don’t know how to do this.  I want my mommy!”  My roommates and I all unpacked together in a somewhat awkward but collegial silence, occasionally asking each other questions about where we were from, our diagnoses and our families.  There was a sense of anticipation in the air during that first afternoon, but it was also quite clear:  we were all far from home and we were in for something quite unexpected.

I was immediately surprised and pleased to discover that there would be no designated time for us all to sit around and “talk about cancer.”  The nightly campfires provided an opportunity to laugh, be extremely vulgar and reflect on the day’s events, but there was never a sense that we were required to talk about cancer.  Instead, so much of the beauty of the week lay in the ways in which conversations would occur spontaneously – over a meal, on a hike or a jog, at the swing set.  There was an organic rhythm to the way in which we were able to share our stories, and find common ground.  There was pulse of connectivity around our cancer, and as the week unfolded, the pulse strengthened and quickened, and drew us closer to each other.

And then there was the rock.  It’s easy, I think, to consider First Descents, and understand the metaphors at work.  Take young people whose lives have been upended by cancer, whose strength and stamina and very life-force has been drained out of them, and give them an opportunity to face physical challenges, overcome them and understand how strong they really are –  still are – even after everything they have been through.  It may not be rocket-science.  But this exercise, this theory, has the power to truly rehabilitate battered bodies and bruised spirits.  It can make whole once again people who have been so utterly diminished by their battles with cancer.

The first full day of climbing, we were split into smaller groups of four or five campers, each working with a pair of guides.  Having never climbed before, I was excited, but a bit anxious.  We were climbing a series of pitches, working our way toward a steep repel.  One of the pitches, the second or third, was quite sheer, and the footholds were not obvious.  My hands were sweaty, and I couldn’t seem to find a grip.  I would try to secure my foot on the rock and pull myself up, but I couldn’t.  I slipped several times.  I heard my fellow campers at the top of the pitch, cheering me on, and I heard the guides, giving me tips about where to put my hands and feet, but I just couldn’t do it.  I was breathing hard, shaking and sweating –  convinced I was going to be suspended from that belay for the rest of my life.  I would be hanging on that rock face, stranded, trapped in my own fear and weakness, forever.

That moment, of course, sent me right back to the darkest hour of my illness, when I was weak and frail, barely able to climb the two flights of stairs to my bedroom, when day after day the smallest physical challenge – walking the dog, watering the garden, taking a shower – left me short of breath, panicked and in tears.  I would end up pounding my fists in my pillow, choking on my own anger and sadness.

So, as I hung on that rope, slipping, struggling for a foothold, I relived this trauma, but was also, finally, after what felt like an eternity, able to reach back, into the deepest part of myself, and pull myself up, make it past the breaking point, and to the top of the pitch.  There I was, shaking, my heart racing, feeling it all, on that rock.  Best of all, though, was that one of my fellow campers, a much more experienced climber, was there to fold me into her arms and let me cry on her when I reached the top.  I didn’t have to explain a thing; she just understood.

In truth, I could tell dozens of stories illustrating the transformative power of our week in Jackson:  evenings by the campfire, a morning in the hot springs, afternoon jogs, moonlight hikes to the mountain top overlooking the valley.  In all of these moments, that pulse, that connection borne of our battles with cancer, drew us all to each other.  Love grew, and we didn’t even know it was happening.  It was inevitable.  We had come together, in that time and place, and were no longer alone.

When I returned home from camp, my mind buzzed twenty-four hours a day.  In my waking hours, I could scarcely wipe the smile from my face as I recalled – constantly, almost unconsciously – moments and laughter from our week, and pictured the faces of the people I had grown to love so intensely in such a short period of time.  In my dreams, I was with them, back on the rock, climbing a hilltop in the moonlight, laughing and embracing.  I was utterly besotted, like a love-struck teenager.

Those first days back on Planet Earth, my fellow campers and our counselors and I exchanged a dizzying whirlwind of emails – checking in, offering a joke or an update.  By the end of a day, I’d have a dozen emails piled in my inbox, and it tickled me to no end.  I loved seeing how we all yearned to nurture the connections we had formed during camp.  None of us, it seemed, wanted it to end.

But reality intrudes, and life goes on.  For me, I am happy to say, it’s been an extended high, as I have gained not only the love and friendship of a remarkable group of human beings, but because the sense of isolation which has so defined my psychic universe since being diagnosed with cancer has finally – and so forcefully – been alleviated.  And on our last night in Jackson, as we all stood, arm in arm, with candles lit, feeling these connections course through us, I honestly believed that I was being given the greatest gift in the world.  It was a miracle of humanity for which I will be forever grateful.

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three month check-up

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It’s that time again.  Three-month check-up tomorrow.  With each successive quarterly interval, I have found myself slightly less anxious.  There is less of a sense of foreboding.  I no longer see the designated date from weeks and weeks away, looming ominously on the horizon.  It has become “sort of routine,” as I described it this evening.  It is also still sort of scary and annoying as hell.

I had a CT scan over the summer and everything looked good, except they found a 4 mm “non-specific spot” on my liver.  Of course when I first heard the news, delivered nonchalantly by my oncologist’s nurse, my stomach plummeted and I could feel the panic rushing through my body like wildfire.  Soon after, I spoke to my doc directly, and she reassured me in terms that I could understand that it was really nothing to worry about , that she’d be “happy to keep an eye on it.”  OH REALLY??  How nice of you.

No, I love my doctor.  She handled the situation perfectly appropriately.  For the most part, in the intervening months, I have been able to put that little 4 mm fucker out of my mind.  Now, though, on the eve of my check-up, I am wondering what sort of nasty business it has gotten up to.

The drill is always the same, and totally familiar at this point.  Check in.  Fill out the forms.  Sit and wait.  Head back into the examination suite when the nurse calls me.  Get on the scale. *SHUDDER.*  Sit in the exam room.  Strip.  Put on the fucking paper gown.  Sit on the table.  Wait some more.

Greet Christina, with her forceful little handshake.  Answer the questions:  Any pain?  Shortness of breath?  Problems with your incision?  Bowels?  Problems urinating?  Negative to all of the above.  Get in the stirrups.  Little bit of pressure.  LOT of pressure.  Everything looks good.  Go get your bloodwork.  See you in three months.

It’s all over in five minutes.  I get dressed, feeling the sweat that has pooled in the crooks of my arms, is dripping down my back.  I take a deep breath, and walk back into the world, to resume living.

In those brief visits, when I collide headfirst with the reality of my cancer and the new rhythms of my life, it feels like time stops.  I enter this place where the only thing that exists is my body and its mysteries, its fragility.  All of the things I have accomplished – all of the mountains I have climbed, all the words I have written, all the miles I have travelled – all of it melts away, and I feel like I am face to face, once again, with my own mortality, begging for another three months to continue living.

Right now, rationally, as I sit here, I know that I am well and strong and cancer-free.  Honestly, the anxiety triggered by this latest three-month check-up is quite manageable.  I have not been battling that sinking feeling that used to so often consume me for days when I thought about facing my doctor.  Still, the irrational fears cannot be completely suppressed.  The most recent incarnation has been triggered by the fact that I am suddenly aware, for the first time since going bald, that I can actually FEEL the wind blowing through my hair.  My hair!!  My fabulous hair!  It’s getting long (relatively) and crazy and I love it.  Realizing this,  I quickly become convinced that of course now that my hair is back with a vengeance, I am destined to lose it again.  I guess that’s the PTSD talking.

Just before sitting down to write, I watched the video I made of the week in Jackson.  I needed a shot of love.  I needed my FD family – to see us all out there, kicking such insane amounts of ass, climbing those mountains, doing those donuts.  Seeing those images, watching what we did, feeling the love that we generated, filled me with this incredible sense of strength and resolve.  It reenforced my sense of wellness.  It reminded me that I can handle anything.

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the sounds

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I have long suspected that the reason I love music so much is because I lack a strong sense of smell.  For most people, the conventional wisdom is that smell is the primary trigger for memory.  Something else must be going on with me, though, because I am well-known for having a memory like an elephant.  For me, music has always held powerful, almost palpable memories.  Countless specific moments in my past are connected with music, and whenever I hear a certain song, I am instantly transported.

Music is omnipresent in my life, a fact for which I am endlessly grateful and perpetually excited.  I spent two hours in the garden this morning, weeding and getting things ready so that our perennials can die with dignity this fall.  Music drifted over me as I worked, everything from Lou Rawls to U2 to Herbie Mann to the Sounds, a band I am just getting to know this week, thanks to FD pal Hottie Bucks, and who we will be seeing down at the TLA tonight.  And of course, the Kings of Leon – another band unknown to me until Jackson Hole, but whose “Sex on Fire” will forever put me right there in the backseat of that rented Suburban, hanging on for dear life while Flippy Floppy sent us swerving down the winding Wyoming roads.  I am grateful for my eclectic taste and my open mind. Few things thrill me more than welcoming new music into my life.

But in recent days I have also been thinking about a different kind of sonic landscape.  The sounds of the city, and what they mean for me, what they conjure, and what life will be like without them if we do, as planed, pack up and leave the city for the more affordable confines of South Jersey, entering a world of suburbia which I never, ever thought would form the boundaries of my domestic life.

Like music, the sounds that drift through the air on Orianna Street are also powerful triggers.  During treatment, I spent countless hours in the backyard, reading, doing crossword puzzles, gardening (on the rare occasion I had the energy), writing and often, looking up at the sky, feeling the sun and the breeze on my skin, wondering what has happening to me.  I lived in a kind of internal silence during those long days.  I would visit with my neighbor, sometimes talk on the phone and to the pets, but there was a quiet borne of the isolation of my cancer that I could never entirely shake.  It made sense, then, that the sounds which filled the air during those months pierced me so.  The rush of cars on 4th Steet, the occasional screams and cries of children, the hammering from a neighbor’s home improvement project – this was the soundtrack that filled me up.  These were the sounds of the loneliness and fear to which my cancer gave rise.

In spite of that fear and isolation, or perhaps because of it, the garden which formed the backdrop for all of these sounds became my sacred place.  With the help of friends from work, I was able to transform our small patch into a lush thing of beauty.  As Spring moved into Summer, keeping the plants alive  and healthy was therapy for me.  I tended to them as I believed I was tending to my own health, even though it felt like the thing which was supposed to save me was slowly killing me.  One workmate in particular has a remarkable green thumb, and counseled me patiently about how to best nurture the living things in my yard.  That gift, the gift of planting and sustaining life, was one of the greatest things anyone did for me while I was ill.

This friend had her last day in our office yesterday.  I am thrilled that she is moving on and has a great opportunity to expand her skills, face new challenges and provide more for her family.  Today I thought about her as I worked in the yard,  and I thought about what it means to embrace change and not fear the unknown.  Cancer has taught me to accept that life is not static, nor should it be.  The vision I always had of being a City Girl – committed fully to an urban lifestyle – is changing, as I accept the reality that the life we want is probably not attainable in the place we would ideally like to live.  So we adjust, and embrace the thought of moving on, toward something else – different, unexpected, unexplored.

I will miss my dear friend every day at the office.  She did amazing things for me when I was at my lowest, without even knowing it.  Between my surgeries and treatment, she coordinated a massive group knitting project in our office, and produced a gorgeous shawl – everyone having contributed a row or two, regardless of previous knitting experience – which became my security blanket all through the long, cold winter of 2008.  After I returned to work, on days when I just couldn’t hold myself together, I could slip into her office, let myself go, have a hug and a chat, and leave feeling restored.  She was always the very essence of compassion and tact, always sensitive  and concerned, never judgmental, and wonderfully tough when it was appropriate.

A few days ago, I was at her desk, looking for a file.  She had stepped away, but there was music coming from the speakers on her computer.  The strains of classical music – she had recently discovered how to stream WTRI and was thrilled about it – drifted quietly toward me.  There was a serenity in that moment, in those sounds.  I paused to savor it.  It was a chance, however briefly, to sample the soundtrack of her life, and to think about how it has mixed with my own.

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go with what you know

g-fishbowl4c

Today, I took a trip part-way down the rabbit hole with one of my clients, a lost and disturbed young man who seems to be, with each passing day, losing his grip on reality.  His story, though by no means completely unique among the population of children who spend their lives growing up in the custody of the Department of Human Services, has been haunting me for months, and I fear that the denouement is fast approaching.  He has endured indignities that no human being should have to face; he was abused terribly as toddler, then adopted into a family where he suffered further mistreatment.  He has lost his entire biological family, and has been passed endlessly from foster homes to psychiatric hospitals to residential treatment facilities to group homes.

I have tried to be a stabilizing force in his life, and a few months ago, he thanked me over email for being one of the few people who has ever really cared about him.  Now, though, he seems to be slipping further and further into some kind of permanent delusion, and all he wanted when I spoke to him this afternoon was to get on a bus and leave for the city where he believes his biological family still lives, waiting for him, like a mirage.

Working in child welfare is, frequently, the embodiment of Einstein’s definition of insanity:  doing the same  thing over and over again and expecting different results.  The underlying social and economic issues that give rise to abuse, neglect and mistreatment of children are so ingrained in us all, etched so deeply into the fabric of our culture, that it’s virtually impossible to imagine a time when those of us in this field will stop swimming in the same circles, in the same fishbowl, toward the same unattainable goal.

I have had the same conversation with my troubled client at least a dozen times in the past few months, as I have tried in vain to help him understand the value of his life, the importance of making good decisions about his physical and mental health (he has several serious diagnoses.)  But the monologue is getting stale, and my conviction is starting to flag.  I am scared for his life, and I am tired.  I don’t know what else to do for him.  To paraphrase a line from LIMBO, one of my favorite films, “Sometimes, you can’t save someone.”

I have been working in child welfare for nine years.  It happened by accident.  Being in the field has permitted me an opportunity to feel like I am touching lives, making a difference and sometimes even getting at some of the huge social issues that enrage me.  But today, after endless phone conversations with my client which left me wanting to stick my head in the toilet and flush, I am wondering why, and for how much longer.

There is a tectonic shift happening underfoot.  I have worked hard to reclaim so much of myself since my illness, and the miracle in Jackson continues to reverberate and provoke.  There is an efficacy to what I feel myself capable of doing in the world of young adult cancer that I simply don’t know if I possess in relation to my work in child welfare.  All of us who fight this battle struggle so profoundly and tirelessly, for an inch of progress, for the satisfaction of affecting one individual life in an unending current of suffering.  I simply cannot see an endpoint.

Writing and agitating about young adult cancer feels different.  There is a theory of charting out a professional course that says, “Go with what you know.”  For nine years, I have toiled in a universe that I have come to understand, but which I have never been a part of.  Whether because of my color, my background, my education, I can never fully know the lives of my clients and their families.  I will forever be on the outside, looking in.

What, then, would it look like, to transform the sense of belonging and insight and community that I have gained from the world of young adult cancer, into a mission – to channel it into efforts to change the way those who come after me go through this experience?  I am really not sure, but I am eager to find out.  To get out of the fishbowl, and into a place where I can work toward clear change, where there is actually a possibility of one day achieving something better for those who are most desperately in need of hope.

Suffering cannot be quantified.  My client’s pain is no greater or lesser than the next 35 year old woman who walks into an oncologist’s office and is told she has Stage III ovarian cancer.  But perhaps it is time to go with what I know.

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