Tag Archives: survival

Hurricanes, For Real

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Yesterday, after our faith community shared the names and worries and celebrations in their lives, about which we prayed as a congregation, I then closed by delivering a spontaneous closing prayer. Inspired by the impending hurricane, of course.  This was offered at at the church where I conduct my field education in Beverly. It went something like, “God, high winds are coming. We have lifted up to you our hopes and our concerns. And we know that you are the Creator who can calm the waters and create a quiet place in our lives and our hearts, a sanctuary amid the storms. Now we ask you to hold our concerns, the ones we speak aloud and the ones that we share through silence, hold them in your light.”

Today as leaves are torn from their twigs and then branches fly loose, and only tree roots cling tightly, as salty white-capped tides rush up over the causeways, making islands of green-tossed hillocks at the edge of sea and shore, as the world is shaken and blown, I’m inside writing  papers, working on an exam, finishing  deadlines, and hoping we don’t lose power, so I can fit it all in. As if I can outrace, outpace all the storms in my life. Can any of us do so?

Although classes are cancelled and businesses are closed, once the world reopens tomorrow, if enough of it remains in functioning order, we’ll be back on schedule. I won’t be permitted to turn my assignments in late, or say I didn’t have time to read my books. At least that’s how I interpret things … but I did take a break to make tea while there’s still hot water, and put a soup simmering on the stovetop. We have our candles and batteries gathered. Extra water set aside. We’re safe inside. Ready as we can be, I suppose.

So I want to pause a moment, and pay attention to Hurricane Sandy. She’s hitting the Eastern coast of the United States. We have friends and family directly in her path as she comes ashore. And likely our part of the country will experience some of her might and fury. Other parts of the country have felt the edges of her storm, which have created blizzards and snow storms, for instance. Her reach is extensive.

Always, I find comfort in language. This simple stanza by William Carlos Williams certainly speaks to our world’s weary resignation when pummeled one more time.

HURRICANE
by William Carlos Williams

The tree lay down
on the garage roof
and stretched, You
have your heaven,
it said, go to it.

Another blogger named Austen Allen collected some hurricane poetry last year. When I was researching storm poetry, his posting popped up, and I defer to that entry for a nice overview of lyrics about storms. You can find more at poetry.org.

Also, if you want to think more deeply about the words that surround our human responses to loss and disaster, consider visiting Nicole Cooley’s entry at poetry.org about the Poetry of Disaster. She argues that far from being voiceless and speechless at times of crisis, we fill the void of loss with language. We shape it. We reflect on it. We try to make meaning, to fit it into verse, so that is knowable. So we can  scale it down to a proportion we can actually understand: a size that fits in your mouth, or can be swallowed by your eyes, that can spoken and read and shared.

Sometimes the storms that lash out at us, that suddenly topple our lives, uproot our realities, or pick us up and carry us off in new directions, aren’t literal weather patterns. Maybe they’re emotional or mental assaults. Maybe their financial crises. Lost jobs or traumatized relationships. Sudden catastrophic changes. Violence or illness. Events we can’t imagine, over which we have no control, that leave us standing in a torn, flooded and sundered landscape. Where nothing is familiar anymore. All is changed and damaged. Yet we are left to navigate, to rebuild, to name and claim it all over again.

Meanwhile, consider this poet’s viewpoint about what is familiar and beautiful to you, and how it can suddenly become your undoing.

Problems with Hurricanes
by Victor Hernández Cruz

A campesino looked at the air
And told me:
With hurricanes it’s not the wind
or the noise or the water.
I’ll tell you he said:
it’s the mangoes, avocados
Green plantains and bananas
flying into town like projectiles.

How would your family
feel if they had to tell
The generations that you
got killed by a flying
Banana.

Death by drowning has honor
If the wind picked you up
and slammed you
Against a mountain boulder
This would not carry shame
But
to suffer a mango smashing
Your skull
or a plantain hitting your
Temple at 70 miles per hour
is the ultimate disgrace.

The campesino takes off his hat—
As a sign of respect
toward the fury of the wind
And says:
Don’t worry about the noise
Don’t worry about the water
Don’t worry about the wind—
If you are going out
beware of mangoes
And all such beautiful
sweet things.

Belated Ode to London Olympics

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The Olympics are over, and I barely had a chance to see any coverage. Nor did I refer to them, in daily journals.

On the other hand, I had to call and make appointments, or negotiate social outings with friends, so that our visits didn’t interfere with the second half of final Olympic games. That’s how I navigated the past few weeks, in order to see people who watch the Olympics, when I was otherwise working, completing projects, or handling family logistics regarding college stuff for Sarah and myself.

So I haven’t even mentioned or acknowledged that the past few weeks were the Summer Olympics 2012 in London. And that we have friends in England who are covering these events for the BBC in their county. And that we’re cheering for US athletes, but also for every other big-hearted athlete in any competition, regardless of nationality. And that I sneak online to catch up on the highlights, but I have friends who rivet themselves to a large screen every night, watching-watching-watching. And that I cry when I watch.

Now Chris and I don’t follow any sports in particular. Not even baseball or football. We’re fans of New England teams, because they’re our “local” teams. Red Sox. Celtics. Bruins. Tigers (our home town team).

And yet, when I see out-takes of the great feats and competitions of these events, I weep while I watch. Yes, I’m a Kleenex-carrier, because I cry and sniffle at almost any emotionally-demanding experience, like weddings,  sappy commercials … or moving Olympic “final moments.”

Now if you ever DARE to compare your life experiences to those of an Olympic athlete … if you say, for instance, “Don’t you feel like you just ran a marathon? Or got a gold medal?” Well, anyone on those global teams might roll their eyes. It’s sort of like comparing your life experiences to being under fire with other soldiers, without ever having had that combat or military experience.

Sure, we can make comparisons. But if we haven’t lived through it, we can’t imagine it. Can we?!

And yet, the whole point of these games is, in part, to involve all of us in these adventures. To encourage us to identify with young, visionary athletes who dare to dream and strive and reach and fail and win. In a sense, we believe they’re like us, and we could be like them.

Well … let me say … there’s a certain level of justice to the comparison between every-day heroes and Olympic athletes. We all, I think, live through personal times that demand extreme efforts from us. We take on Herculean responsibilities, sometimes because we volunteer for them, and sometimes because we are required to undertake them due to circumstances beyond our control. Most of us, I think, are eventually called, one way or another, to rise up and respond  to an extreme situation.

Homework answer written by Jessie Doktor: Red Sox.

That’s why pediatric cancer patients, for instance, identify with their favorite athletes. We used to hold parties in the resource room during events like the Superbowl, and bald patients would paint team logos on their scalps. Why do they root for their team during baseball’s World Series or football’s Superbowl? Go, Pats! Go, Sox!

Does it matter who wins? Yes, and no. Symbolically, a child may be identifying with a superstar or an underdog team, and if they’re winning, then the child feels inspired by that win … maybe it metaphorically promises the possibility that a child will recover and survive, too. And if they lose … well, the child and other fans realize that a feisty team has put up a great fight, and shown the spirit that inspires us all to keep cheering and believing, against all odds.

In such circumstances, we can imagine ourselves as Olympic-level athletes or fierce warriors. Fighters. Competitors. Winners.

And in that circumstance, who will argue with the comparison? And in that time, don’t the Olympics inspire you all over again?

Maybe we won’t all break speed records or earn medals or stand on the risers while the world sings our anthem. And yet … yes, I do believe, we are all required to perform Olympic-sized feats in our own lives. And so these young athletes inspire us. Remind us. Challenge us.

Like them, we reach for more. Like us, they keep going.

Self Care: Checklist from the Past (Still Works)

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Self care in difficult places. How do you do it?

Back when we spent extended periods of time with Jessie at Childrens Hospital Boston, it was easy to let go. To make excuses and just overindulge. To say to myself, “You’re under tremendous stress, so don’t worry about what you do to make yourself feel better. Just take the elevator, because time is more important than exercise on the stairs. And the breakfast pastries? Those carbs don’t count right now.”

But those indulgences did count. The cravings, the bad food, the less-than-virtuous habits, the lack of movement … it all added up. And I carried (and still do) the results of that lack of self care even now. I’m still regaining balance.

Now let me clarify, that given the constant crisis in which we often lived, I coped darned well. I only slept a few hours each night, but I was alert and functioning at a very high level. Always “on” …  checking monitors and daily numbers, being Jessie’s companion, working out Jessie’s schedule for the day (coordinating visits with friends for her, organizing therapeutic appointments, negotiating time on/off the IV so she could be more mobile, making a plan with her nurses for any other particularly difficult procedures, scheduling her daily ACE flush, participating in rounds with the oncology and transplant teams … later ICU teams … and any specialists), consulting with a variety of staff members at crazy hours of the day and night, and keeping up with Chris and Sarah either during their visits, calls or remotely (I was still handling Sarah’s schedule and organizing the logistics of her daily life, from a hospital room in Boston, through a network of phone calls among friends). We did a lot from a small room in Boston. But only because we had so many people willing to help. Chris and I were a team. And our community was an extended web of compassionate hearts and hands, willing to make almost anything possible.

Taking care of yourself and each other? Could depend on your definition, I suppose. In a way, when your child is diagnosed with a mortal illness, your sense of power, control and competence is already being put to the test. You can’t make her safe anymore. The disease wasn’t cause by your lack of vigilance, and it won’t be fixed because you pay extra attention now. And yet … you have been dealt a severe blow to your own self-image as a parent and member of a family.

Realistically, although only one body is affected, this kind of trauma happens to everyone. It ripples out and touches, affects, changes all family members … and also friends, peers, community. In my family? I think we all feel like we had cancer, though only Jessie truly did. And if she were here, she’d stomp her foot, raise her voice, and be quite clear that it happened to her body, it was her experience, and not mine. Not dad’s. Not Sarah’s. But in many ways … yes, it happened to all of us. Hurt all of us.

Below are some of the ways we managed self-care even in stressful places and times. Many of them would translate well to virtually any experience in life. Admittedly, it’s easier to dole out wisdom than to act on it … I attempted all of these things, but I was better at some than others, as I’ve admitted earlier in this entry. If you find something helpful on this list, that’s great.

  • Walk. Use the stairs. Exercise. The hospital staff used to pass out pedometers, so that parents could measure how many steps they walked. We figured out that several rounds up and down the halls of the hospital, as a parade of patients and parents riding or driving wagons, tricycles, IV poles and plastic cars, totaled a mile or more. (Jane Roper, the mom whose daughter has just completed her first month of treatment for leukemia, made a humorous post about her exercise regimen. It was familiar, I assure you.) Or you could go down to the garden, as Jessie often wanted to do, and run laps. We had a timer and stop watch, because she liked to be clocked for speed. Usually I was timing her, not running, though. Using the stairs? It was an easy way to improve cardiac health. I started, in the last few months of Jessie’s stay, to challenge myself to do this every day. I admit that down was easier than up.
  • Eat healthy foods. Homemade food didn’t really exist at the hospital. There was plenty of cafeteria food, and it was fine, but not home-cooked and not always very appealing … the best, healthiest menu item available was the soup from Au Bon Pain restaurant. Otherwise, we always asked for homemade food in containers … Chris would bring a stack of filled Tupperware for us to put in the unit’s refrigerator, slices of all the casseroles and meals that our friends were delivering to the house each week. I tasted a lot of those meals. Now kids on treatment have steroid cravings, or can only eat restricted diets, and sometimes homemade foods won’t work. There were lots of times when we gave up, and let Jessie eat whatever she wanted, but we worked hard to offer healthy alternatives, and not to buy into the “every calorie is a good calorie” mantra we’d been taught early in her treatment. Like us, she had to have healthy eating habits that could translate in and out of the hospital, as much as possible.
  • Say yes. When people offer to help, let them. Be specific and express your needs. It empowers others when they can’t actually do anything about the disease, but you give permission for others to “do something” in other ways. It heals everyone. And lets you focus your limited resources and energies where they’re most needed. We went through this journey, as I mentioned above, in the company of hundreds … possibly thousands … of caring souls, starting with our own extended families and our town of Ipswich. Meals. Pet care. Household chores. Rides. Visits. Errands. Childcare. Yard work. There are always so many big and small ways that others can assist … it takes a village to raise a family living with cancer, you might say.
  • Find a mental escape. A little every day. Late at night, when Jessie finally went to sleep, was the only time my brain could have “down time,” and I craved that almost more than sleep. I needed to go on a mental vacation. So I’d put on earphones (one side only, so I could listen for Jessie and the monitors, though) and if I was too tired to read a book, I’d watch movies … all of the movies made from Jane Austen’s novels or the Bronte sisters’ works … and the entire JRR Tolkien Lord of the Rings series. Fantasy. Period pieces. Stories so removed from the room where we lived, with beeps and clicks and small flashing red lights and digital numbers counting down, that I was transported away, could escape and unwind a little bit.
  • Swap shifts. Take a break. Most families had some variation on this routine; parents would trade roles. One would spend time at home, the other in the hospital, with brief overlapping periods. Some would do a night-day rotation. In our family, I’d do the week shift, Chris would come in and handle the weekend, and I’d go home, spend some time with Sarah, and get the only real sleep of the week. Chris would take a fresh look at the situation in the hospital, and problem-solve whatever he could.
  • Sleep. When you can, every day. Naps are good. If Jessie slept, sometimes I did, too. I’d start off in Jessie’s bed, until she was deeply asleep, and then I’d move over to the “parent bed” and attempt to sleep more deeply.
  • Counseling. Work on what’s happening. We had a therapeutic relationship counselors. We spoke (or in Jessie’s case, played) with the counselor as often as possible. We also did a lot of role-playing with dolls and stuffed animals. Writing stories or creative art projects.
  • Social time. We made play dates or therapeutic sessions for Jessie. Adult friends came down to visit, too. (And the staff were often friends, so you could have plenty of bonding time with them, too. Many of the nurses and a few of the doctors remain good friends even now; they allowed themselves to be more than just medical caregivers. If you think about it, we basically lived with them for extended periods of time.)
  • Shower. It helped to scrub away one day’s stress, stand for two minutes under the pounding hot shower, and then feel slightly more alert and a little more pulled together.
  • Clean clothes. Chris did loads of laundry and brought them in, exchanging dirty for clean garb … it was possible to do laundry in the hospital, but it was another chore and expense that we handled at home instead. And when the new bag of clean clothes arrived, it smelled like our detergent, our house, our …. Our lives. I developed a “hospital uniform” that was layered for temperature changes (we would travel to different areas that were hot or cold), could stand up to messes (blood or puke, for example), remained comfortable (I was often contorted into weird positions, crawling into bed with Jessie, playing games in odd spaces, etc), felt clean and loose (I hate tight constricting clothes) and forgave my lack of grooming, but made me feel presentable when dealing with teams of professionals who can shower and change into cleaned, laundered and pressed outfits with heels or polished leather. I was lucky if I got to brush my teeth. Jessie had a whole different wardrobe. It was mostly pajamas and some street clothes, all marked by her style. Lots of cute slippers or flipflops. Head gear, scarrves and hats. When she had certain kinds of cardiac catheters, we sought halter-style dresses, pjs and tops, because of how we had to maneuver her arms in and out of clothing.
  • Personal grooming. Take a little quiet time. I liked to get away from the hospital room, behind a closed door inside a bathroom to myself for five minutes (on oncology, ICU or transplant, parents shared a few bathrooms, so you couldn’t monopolize it for long). Completed small daily rituals. Brushed my teeth. Shaved armpits. Applied deodorant. Washed my hair if there was time. Changed my socks and undies. Phew.
  • Cry. Mostly in the shower. You can weep in private in a shower. Your child or spouse won’t know. And you have to let it out sometime.
  • Journaling. Wrote a daily blog entry that I would email to Chris, along with photos if I’d taken any, and that he would post for us. It was a joint effort to maintain the journal every day during Jessie’s treatment. Tried to make some meaning of this experience, and also communicate with everyone who cared about what was happening. Other people did it through scrap-booking, or video journals, Youtube posts, or online journals such as caringbridge or carepages, or MySpace or Facebook, or yes, old-fashioned diaries. In all kinds of ways, the experience was recorded. In addition, we kept a running Daytimer schedule appointment book that was passed back and forth, so that when we handed it to each other, we’d recorded such items as what medications had been given, what doctors had visited, Jessie’s vitals, her temps, if she’d eaten or gone to the bathroom, what she’d had been doing (active, tired, playful, cranky), any memorable quotes, and those sorts of details.
  • Communicate. Visits in person. Notes and letters. Pictures. Skyping. Phone calls. Facebook. Staying connected.
  • Photography. An amazing tool for family and the patient, too. The lens can be turned toward the experience itself, or pointed outward, away from the body and self, to whatever else draws the eye. The birds in the garden. Other patients. The hospital environment. Details. Also, we put up the prints of loved ones and home where Jessie could see them and visitors could look at them. They can help with visualization. And remind caregivers that this is a real person, a well-rounded family, and they’re only meeting us in one part of our lives, but through photography they can learn more about their patient as a whole person, with other interests and even appearance (like a kid outside on a soccer field with hair, not just bald in pajamas hooked to an IV pole).
  • Take a walk. We’d negotiate ten minutes to walk outside in the garden. Or while a nurse or therapist kept Jessie company, because she didn’t usually ever want to be alone in her room, even surrounded by staff, I’d make a quick run for supplies (toiletries from pharmacy, snacks from grocery or new titles and games from the book store). Sometimes I’d stand outside the front entrance to Childrens, ignoring the traffic and the pedestrians, and just lift my face to the sky. You don’t know how important it is to feel any kind of weather on your face … rain, sun, wind, snow … until you’re stuck behind a layers of insulated glass in an environmentally-controlled, filtered-air, cycled-water, colored-lights-in-the-ceiling unit … where nothing is real.
  • Caffeine. I wanted to sip chai latte every day. Some people love Dunkin Donuts for its coffee. I drink tea, so I went to Starbucks, because there wasn’t a Zumi’s in Boston.
  • Creativity. Sing. Dance. Make a video. Express yourself.
  • Pets. Animals are an amazing form of unconditional love and affection, and a safe place to put feelings you don’t share with anyone else. They won’t give away your secrets.
  • Create family time. We’d organize visits for the whole family, so Sarah remained connected, as much as possible, to events in the hospital, and Jessie got family time. We’d eat a meal together downstairs (during the periods when Jessie was allowed off the floor or in our room), play video games or board games, take a nap, watch a movie, read a book … just hang out.
  • Scream. Jessie had to yell in her bed. We worked on ways to handle rage. We’d close the curtain. She had a “monster” pillowcase on which she’d drawn the “mad monster” and the “happy monster”. She’d flip sides, and pound on the pillow until some of the anger dissipated. Or she’d just yell invectives at the top of her lungs. And why not? What was happening wasn’t okay or fair or anything resembling the childhood that any child might hope for. You can call it a “Book of Job” moment if you want. Other cancer parents have told me stories about throwing rocks at the ocean … hurling missiles at the biggest, most impassive element in their worlds … because it was the closest they could come to screaming and hitting at their Creator (or fate, or providence, or karma, or whatever … depending on faiths).
  • Pray. Yes, always. Sometimes the negotiation variety. “If I do this, will you do that?” We’d make lists of what we hoped for, and ask everyone reading the blog to pray for specifics. Good blood counts. Stability. Remission. Healing of infections. And we were sent all kinds of prayers. Stones with words in them. Angels as pins and small objects. Buddhist prayer flags. Quilts. Native American prayer wheel. Tibetan prayer wheel. Cards and mementoes from sacred places known for their healing power. Meditations and mantras. Digital messages with scriptural texts. Visits with our minister Rebecca. Songs. Oh, and all the unspoken prayers that arrived in every bag and box delivered to the hospital … embodied as stuffed animals, books or homemade food.
  • Laugh. We learned early about the power of laughter to release tension and restore balance. Another family from Ipswich, whose daughter was treated for non-Hodgkins Lymphoma, told us right away about a website called squirreltales.com and a list of funny observations called “You Know You’re the Parent of a Kid with Cancer when …”  We posted the lists on our hospital room door, and other pediatric cancer families also read them and guffawed out loud. We all understood the bizarre humor. Meanwhile, Jessie was a big fan of playing jokes and pranks. She had a fart machine. She’d draw fake rashes with washable marker. She’d make squirt guns out of clean syringes and shoot water at her nurses. Oh, the fun.
  • Seek alternate therapies. The staff used to arrange chair massages for parents. Once a week, if you were lucky, a masseuse would come work out the knots of tension, anger and grief in your neck and shoulders. (It might be the kindest and most intimate touch you experienced in place filled with masks, gloves and gowns.) We also had access to reiki, which didn’t require touch, and was safer for patients to use, too. And then there’s simpler therapy, like doing manicures. Believe it or not, that used to be a very helpful pastime for parents and patients alike. Except you have to leave one fingernail unpainted, so they can hook up one of the monitors that clips to your finger and reads vitals through your nail (I think it was O2 saturation, but blessedly, it’s been long enough that I don’t really remember, and I’m not going to research it for this blog). And yoga.
  • Know you’re not alone. It was humbling to realize that we were surrounded by other families also on the same journey. When you look outside your own door, or even peek around the curtain in a shared hospital room, you learn that this story has many variations and many outcomes. And you have a whole lot of companions, people you’d never meet any other way, who share this common experience and can understand it from the inside out, and may even have more wisdom or tips for how to cope. And as mentioned earlier, you also have friends and family participating, as much as possible, in this journey. And staff, who also become like family along the way. You really have a whole lot of support and community available. (I hope others also find this true, anyway.)

Okay, here’s a confession. I also had “drinking” on this list. As in, adult beverages. Margaritas. A beer. Social chances to unwind. But then I decided that was never a self care habit; it was more along the lines of eating too many carbs and making excuses. Not when you’re run down and strung out. So I can’t recommend it as a responsible therapeutic step. Even if it’s soothing.

The truth is, we also cope by indulging. Becoming childlike in our activities. We play video games. Eat sugary or salty foods. Misbehave in many ways. And that’s okay. That’s human, and it’s part of what happens in stressful times. It’s just good to find equilibrium, and use those other resources listed above to maintain some healthy counterbalance in life, and not tip so far over into any unsafe, destructive choices, that you can’t be a responsible, competent caregiver to your family or yourself.

Spin

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Here is the other theme song I wrote a fear years ago for our cyclists. Sarah has performed this at the Coast of Hope bike ride a few times.

Our first family PMC, with Jessie as a young pedal partner, pictured with the team riding in her honor.

Again, the song has wider meaning than just one event. To me, it represents any ride or journey, including the one that Chris and Sarah will continue when they ride together tomorrow in the Pan Mass Challenge / PMC. (I’m posting more images from several years of the PMC, so you can see just how young Jessie and Sarah were when all of this activity began, and how mature Sarah is now, as an adult rider celebrating this tradition with her dad. You’ve already seen images from 2010 and 2011 in the past few days.)

None of us can imagine, from start to finish, just where we’ll go along life’s pathways. And most of all, what determines the finish line? There are so many milestones we pass, so many balloon arches underneath which we ride, so many bridges we cross, so many lines we draw and then step over, so many gateways through which we move … we don’t always know what’s around the corner or beyond the next crossing. You may cross one demarcation, but in many ways, the ultimate destination is always just ahead.

Enjoy the ride, enjoy the journey, as much as you can. It’s the passage from one way station to the next, the route from one stopping point to the other, that comprises our life together.

Here’s the song.

Spin
by Gail Doktor © 2009

Hearts cry out as wheels start turnin’
One more ride and one more day
Dare ask questions along this journey
Hope for answers along the way

Sure I’ve been lost and I’ve been broken
Look for hope after living through hell
Had to stop and start all over
Still carry scars from times I fell

      Oh you can’t measure life in speed and distance
      Or starting points and finish lines
      It’s where we go and who rides with us
      Every moment, every mile

What comes next? No way of knowing
Each arrival includes farewell
In our coming is our going
…in between we spin the wheel.

      Oh you can’t measure life in speed and distance
      Or starting points and finish lines
      It’s where we go and who rides with us
      Every moment, every mile

Find the beat
      Moving you onward
Breathe the song
      Of our going
Hear the drumming
      Of our heartbeats
Risk the turning
      Of the wheel

      Oh, you can’t measure life in speed and distance,
      Or starting points and finish lines
      It’s where we go and who rides with us
      Every heartbeat, every hope found
      Every moment, every mile

Chris and Sarah hold up the Bright Happy Power banner during a rainy 2011 PMC.

Jessie and Sarah waiting at family stop in Dighton for our PMC riders.

Our 2009 PMC team (in Wellesley, MA … more riders left from Bourne, MA).

Why We Ride

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Something short, for a change, I promise.

Below are the lyrics to a song that I wrote for the Coast of Hope bike ride, but they apply equally to the Pan Mass Challenge bike ride this weekend.  Chris and Sarah will ride as a father-daughter team for the fourth year. We welcome your support for their ride, but also know that many of you actively support other causes that are close to your heart.

Let this song speak to you. It is written for any ride, any journey, regardless of the cause or inspiration. As soon as possible, I’ll share the recorded version with music and vocals by a local high school band called Gnarly Charlie. It’s inspired by the many cyclists in my life, past and present, and there are lots!

WHY WE RIDE
by Gail Doktor © 2012

We ride to feel the rush
And the stirring of the wind
We ride on paths unknown
And roads where we have been

We ride through wild silence
In rugged highs and lows
We ride in dappled sunlight
And where the seawind blows

     Oh, we ride for those who can’t
     We ride because we can
     Yes (oh), we ride because we believe
     We ride for one more chance

We ride to push each other
Past distance, youth and years
We ride to push ourselves
Beyond all doubt and fears

We ride in celebration
We ride beyond our loss
We ride to honor others
Or to help a greater cause

     Oh, we ride for those who can’t
     We ride because we can
     Yes (oh), we ride because we believe
     We ride for one more chance

We ride to find a way
To get up when we fall
We ride to finish first
Or to cross the line at all

We ride at softest daybreak
We ride til touch of night
We ride in search of hope
We ride to catch the light

     Oh, we ride for those who can’t
     We ride because we can
     Yes (oh), we ride because we believe
     We ride for one more chance

Jessie and Sarah on bikes, before cancer.

Jessie and Sarah on bikes after cancer.

Cravings

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How do you know when what you want is also what you need? When they’re opposites? Want can compromise you, as much as it might entertain or satisfy you. While need is essential to survival and greater quality of life.

Work of artist Erin Hanson

Sometimes you mistake one for the other. A craving can become a force so powerful that it feels like a requirement, something you must fulfill, or else you might not make it through the day. This link will lead you to the work of artist Erin Hanson, who makes some very witty observations about this issue.

How do we tell the difference between want and need? Oh, I think we know. Sometimes we deny or ignore it. That can be part of the danger to ourselves (and others). But often enough, we know what can be most satisfying and also most damaging at the same time.

We all have soft spots. Me? I have plenty, I admit it. I know it.

Food is an old friend, and a particular weakness. I sometimes find myself by the pantry or fridge, craving a bite. Not as tempting as it once was, because I have recognized and worked hard to gain balance when I lost it, but oh, there are times when I want something … Sweet. Salty. Mmmmm. And it’s not because I’m particularly hungry. Could be stress. Boredom. Bad habits. Social routines.

Sometimes we have instants of epiphany. When we actually look at ourselves, and what’s happening, and see just how out-of-balance we’ve gotten. I’ve had my share of wake-up-and-smell-the-coffee (okay, tea for me) moments. Really, these I’m-not-in-control-and-this-has-gone-too-far insights can be as powerful as being converted to a new religion. Transformative.

Then again, sometimes someone else has to express their concerns: a loved one, friend, colleague or medical practitioner. Maybe you have to hear it from someone else to realize that there’s an issue.

Work of artist Erin Hanson

Mainly, I think, you have to be ready to listen. Then to admit that there’s an imbalance you need to pay attention to. Maybe it’s not an addiction, maybe it’s just too much of a good thing, but there’s still a message that it’s time to pause, focus, and regain equilibrium. Or perhaps it is that dangerous; you must realize that something vital is at risk. Your health. Your safety. Others’ safety. Your relationships. Your work. Your home.

That’s the start. But what comes next? The long, slow and imperfect journey of changing bad habits, and realizing the context that leads us toward the not-so-good-for-us decisions. For many behaviors and obsessions, there’s a state of mind and series of events that lets us negotiate with our own conscience, and make deals, and excuses, and half-hearted promises that we won’t keep for ourselves or anyone else. There’s a rush and a reward, short-lived as it might be, that causes us to desire this activity in the first place. Maybe there’s also a social context, among a specific group of friends or acquaintances, that reinforces this choice. Or a true payoff, some measurable value that makes it hard to offset.

Regarding behavior around food, I’ve learned to debate with myself. Have a little discussion. Test the signal from my mind that says I’m hungry. Sip some water and wait 10 minutes. Do I still have the same craving? Or did it fade away? Would a small portion be sufficient to feed the craving, or should I substitute something else, or just ignore the craving entirely? I consider these options, and try to choose the most effective one.

Work of artist Erin Hanson

There are other tools. Maybe you have to keep a journal, to make yourself accountable to yourself, and actually acknowledge, list and monitor (by quantity of time, distance, volume, servings, whatever measurement) your own patterns. Weigh the decision against its cost, such as the exercise involved to work off what you’re about to ingest. Ask yourself … really picture this … how do you feel after you nibble on that snack (or sip another drink or take extra time in front of a screen or buy another scratch ticker or spend free time sitting or lying down)? Can you stop? If the picture in your head isn’t nice (your stomach or your head is upset, you’re disappointed in yourself and diving into a loop of negative self-talk, because you indulged and then over-indulged) that’s a deterrent. Who wants to do something temporarily pleasurable, if the result is that nasty and self-loathing experience on the other side? Visualize who you want to be (maybe an image of yourself fit, happy, connected to other people, active, balanced and in control). And yes, you can pray. Ask for help from a power outside yourself.

What else can give us the same … or maybe a better … fulfillment? Depends on your longings, and what will sate them instead. Also depends on how hard the work is to overcome those cravings and desires, and find an alternative that slowly becomes your new passion. When you want a cigarette, getting on a bike might not sound tempting at first. But over time, the feel of the bike ride, the beat of your heart and lungs, the place your mind can go, will be it’s own sort of rush … it’s own form of high.

Maybe you can’t do it alone. Maybe you need support. Share your goals with your family, so they can also help you (if they’re willing to help versus sabotaging or enabling). Tell your friends, too. Work with a counselor or caregiver. Join a group. Take a class. Find a trainer or a coach, a mentor or a sponsor.

I grew up in a family filled with “isms.” Substance abuse. Mental health issues. Depression. Bipolar. Weight. Money. Physical abuse. Lots of tough stuff (though plenty of goodness, too), and most of it quietly tucked away, until it couldn’t be hidden anymore.

Based on that experience, I would say, “don’t hide it.” Don’t make it a secret that you or others must keep. When it’s possible, and there are circumstances that might make that inadvisable, but more often it’s safest to be open, you can claim it. Make it something that is part of who you are, and something you can live with, and find balance around. You are stronger for it.

Work of artist Erin Hanson

And you know what? You may slip. We’re humans. We backslide. And we have to let that be part of the process, and be kind to ourselves, but also disciplined. And expect the best. Want the most. Try to honor our bodies, our minds, our spirits, our relationships, and that spark of the sacred that is burning inside each of us.

I have named one of my own habits and temptations. But we all have them, and they can take many forms.

Challenge yourself, in the face of the old habit that might be slowly stealing away other aspects of your life. Do I need to invest more time in front of this screen, as riveting as these posts and search results seem and as tempting as that next clickable link would be, instead of doing something else like reading a book, spending time in conversation with a loved one, or going outside to do something more active? Do I need another bite of comfort food, as much as it might sound very consoling right now, rather than a glass of water or a walk? Do I need another hour of work, as simple as it would be to stay here and keep going on this project in which I’m involved, instead of putting down this labor and allowing myself to be more available? Do I need to sleep in for 27 more minutes, as cozy as it is under these covers in this bed, instead of waking up and moving? Do I need to use the car to run that errand, as quick as it would be to complete the task, when a walk downtown will take more time and use more energy and slow me down … maybe in a positive way?

When possible, our lives can be about letting go of want, and discovering how to fulfill need. Yoga. Fitness programs. Self-help education. Motivational classes. Many forms of physical-spiritual practice or faith lead us in this direction. Letting go. Desiring less. And conversely, having more.

The poet Linda Pastan wrote about this issue.

What We Want

What we want
is never simple.
We move among the things
we thought we wanted:
a face, a room, an open book
and these things bear our names–
now they want us.
But what we want appears
in dreams, wearing disguises.
We fall past,
holding out our arms
and in the morning
our arms ache.
We don’t remember the dream,
but the dream remembers us.
It is there all day
as an animal is there
under the table,
as the stars are there
even in full sun.

We are all full of goodness. And we all have passions and pastimes. Often we also have cravings or yearnings, some of which are good for us, and some of which can hurt us. There’s always a chance to shift the balance. It may not be easy. It may not be 100% consistent. But it’s possible. And it makes a difference, for ourselves and those with whom we seek connection.

Muscles and Miles to Make a Difference

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Sarah and Chris during one of the PMC rides.

In a few days, my husband Chris and daughter Sarah will set aside the gentle appeal of speech. They have many stories to share, but for several hours, theirs will be the language of action, instead. This Sunday (August 5), they’ll put their feet, calves, quads, thighs, gluts, abs, spines, pecs, shoulders, arms, biceps, triceps, hands, lungs, hearts (okay, all their muscles) and minds to work in the annual Pan Mass Challenge bike ride. It’s their fourth year as a father-daughter team in this event.

It’s a case of deeds versus words. It’s putting your body and your spirit into gear, once a year, because you can. Riding for a cause. Making a difference. Remembering someone you love. Celebrating someone who survives. Honoring someone who currently lives with this challenge. Or marking a milestone in your own journey, too.

Changing the world, one mile, one life, one revolution, one ride at a time. It sounds dramatic, doesn’t it? Yet it’s true, and it’s possible for any of us.

All of Chris’s major bike rides support charitable causes. He already completed the Coast of Hope to raise funds for our family’s nonprofit foundation Bright Happy Power that works with children and families living with cancer and the ADA’s Tour de Cure to raise funds for diabetes research, an illness that impacts many of our friends, including several children and young adults here in Ipswich. He’s riding this weekend in the Pan Mass Challenge (his 7th year) to raise funds for cancer research through Dana Farber’s Jimmy Fund. He’s also riding later this season in the ALS ride to support research for an illness which affected fellow Rotarian Lou DeGeorge and which has recently changed the life of a peer’s 20-something son.

Over the past few years, Sarah has joined him in the PMC. It’s now a father-daughter tradition.

Even before Chris started riding, back in 2002, cycling teams rode in honor of our younger daughter Jessie, who was originally diagnoised with leukemia in 2001. The first team to ride as her partners were the Carver family and the North Shore Cylcopaths. She was their Pedal Partner. Within a few years, a local crew of Ipswich friends and North Shore colleagues formed a team to ride for Jessie …

Jessie and Sarah together on bikes.

There are also Kids PMC events that make it possible for children to ride, too. Jessie even participated in a Kids PMC in Topsfield while she was on treatment (see a PMC Kids video that features many children … you’ll find Jessie in a straw hat and blue dress).

The big PMC ride remains an annual family tradition. We still believe in its power. Chris and Sarah ride. I show up as SAG wagon (their own support vehicle) and cow bell chorus. I’m sure Jessie’s paying attention, and putting wind in their sails.

Many of our friends are survivors. Their stories are riveting; their experiences were difficult, but there’s a happy ending for lots of families, including Ipswich folks. We see some of them grow up and ride!

We surely know that the work of Dana Farber’s research programs (which is implemented in almost every cancer clinic and hospital around the world, by the way) gave us extra years with Jessie … providing alternative treatment regimens after she relapsed twice with leukemia. She had extra time among us: long enough for her to change many other people’s lives during the brief span of her own.

Make no mistake, pediatric cancer remains the leading “natural” (aka, disease-related) cause of death in children. This is a mortal illness for too many children and adults.

Yet research has made a major difference for many children; it has changed the course of many forms of diagnoses. This isn’t a hopeless cause; we are actually making headway.

Have we … I use the word “we” because our family and every other rider participating in the PMC surely feels invested in this effort … have we identified the causes and cures of every form of cancer? No. Have we narrowed down and improved the long-term survival chances for many children (and adults) diagnosed with varied forms of cancer? Yes. How many more lives can be saved and improved? Many. Have we promised a happy ending to every child or grown-up living with a form of this illness? No. Yet have the “odds” improved? Yes. Are there more survivors? Yes. Greater reasons for hope, decade by decade, year by year? Yes!

This is our family’s cause, for reasons that are obvious to anyone following along. Maybe it’s yours, too. Or maybe there’s something else that has become a personal challenge for you.

Regardless of what issue you care about, there’s something you can do. Volunteer. Walk. Ride. Run. Become a supporter. So many ways you can be part of the collective effort to change the course of events around specific problems.

Words are great. They’re my medium, a lot of the time. (You know I like them, because I use lots of them.) Language has tremendous power to affect people’s opinions or touch their feelings.

Yet actions? Deeds? These are the commitments that get work done.

Me? I sometimes walk for Childrens Hospital Boston (helps the hospital where Jessie was treated for 6 years). I volunteer at a water stop for the ADA’s local Tour de Cure ride (supports fundraising for diabetes) and I volunteer on the course for the Rotary 5k Run and Walk (fundraising for high school scholarships). Of course, I coordinate the Coast of Hope bike ride. Those are my athletic commitments, if you will. I’m more a behind-the-scenes volunteer as opposed to an event participant, but that’s part of what allows these events to succeed, too.

Cowbells as a call to action? Believe!

Meanwhile, our family believes that where Chris and Sarah are riding, Jessie rides along, too. Of course, you’re invited to support Chris and Sarah‘s PMC ride.

But really, this is also a reminder to choose your own cause, whatever it may be, and however you may decide to become involved. You are powerful. You have the potential to be a change-maker. You can create hope. And you’re not alone. In most cases, your time and talent is combined with the work of others. Together, your power is exponential. Your efforts make a difference. Really.

Do you hear the cowbells clanging? Ride, Chris and Sarah, ride!

A Time for Every Matter Under Heaven

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On a grey and misty day, when the sky is overcast, and I have heard sorrowful news from many places, about the return of cancer in a grown man’s body as well as a little child’s belly, why do I feel like crying?

Today, it seems as if even the sky weeps. It comes down, not salty or briny, but as fresh water, pattering gently, renewing the earth.

Don’t you sometimes feel as if the world recognizes your emotions? On a bright windy day, in kite-soaring weather, you might think the earth’s spirits are as feisty as your own wheeling, enthusiastic thoughts. Then at a solemn time like this, it seems as if the earth mourns along with families who are in pain. On occasion, our world echoes back, gently, tenderly, but on a greater scale, our human-sized grief.

After all, this fall of rain is the letting go of pent-up pressure. It is the release of something that was carried great distances, transformed and contained, until it grew too heavy to bear any longer.

Oh, rain. Fall. Fall. Weep, when I can’t. When I don’t have a particular reason to do so, except that I empathize with the news that comes today.

Mind you, no one asked me to worry about a distant family’s  pain or grief. But I do. I care. It happens, I suppose, because humans are wired to have emotional connection with each other.

So today’s journal is a meditation on the news I heard from other cancer families, as well as what I have witnessed as a companion of friends in hospice and reflections from inside our own family’s journey through twice-relapsed leukemia, transplant and its aftermath.

Right now there’s an ache that seems as big as the sky’s sorrow, to know there’s pain inside these families. A different sort of pain than first learning about a dangerous diagnosis. A pain more final than wrapping your head around the threat of disease, then lifting a chin and taking a deep breath, planting your feet and looking fate in the eye, and saying, “We can get through this. There are answers. There is something to be done. We have hope.”

It’s an altogether different reality, when the experts tell you, “There’s nothing more we can do.” And that’s the news that different families received recently.

For the family who hears these words, there comes a new squaring-off with time, fate and faith. When you hear such irretrievable pronouncements, you may …

  • Want to stay right where you are, put your hands over your ears; pretend you didn’t hear, you don’t know, you cannot see. Hope that if you just wait in one place a while longer, ignore it, deny it, then this bad news won’t be happening.
  • Then argue, and say you’re going to find an answer, even if you have to go somewhere else, ask someone else, do something more experimental and unconventional, because this cannot possibly be all there is.
  • Pray. Beg. Barter. Beseech the Creator for a miracle. Or peace. Whatever is possible.
  • Eventually hold on tighter to each other, try to fill silence with everything that needs to be said, begin to check off the best and brightest experiences on your loved one’s wish list, because the calendar isn’t on your side anymore.

For a while, perhaps you think it can’t be happening. It’s not possible.

Then at some point, there’s another transition. A realization. It’s happening. Oh, Lord, this is real.

Relapse? Recurrence beyond known forms of treatment, or beyond any useful medical response at all? It’s not fair. It’s not just. It’s not logical. It’s not … it’s not anything you can easily reconcile or understand. Not at any age, but especially not a father and husband who should justifiably expect decades ahead of him, or a little child who may never attend kindergarten.

But it happens, all the same. For many families, the result of treatment after diagnosis is ultimately hope, survival, and recovery. For others, there is this other other outcome.

I feel … just a little … like I understand families who must keep vigil, make the most of their living time together and perhaps … probably … although we always hold out hope for miracles … find ways to say good-bye. Please know that I recognize that every individual and family’s journey is different. And the outcome isn’t pre-ordained, though science may say it’s predictable.

Because I can tell you more than one story … from our own years on treatment with Jessie … about children who survived, inexplicably, with amazing outcomes, after every scan and test and medical opinion said it wasn’t likely, or even possible. So it’s okay to keep holding out, at least in some quiet part of you, or maybe in the biggest, loudest part of you, for the miracle.

Meanwhile, it may be healthy to immerse yourself in this place where you are. This time … of being together in the face of farewell.

Such experiences can be profound. Meaningful. A blessing in their own way, though very difficult and wrenching. (Or something else entirely.) It depends, largely, on the family’s response, and the support of their caregivers and community.

As a family continues on this journey, they do so in the way that seems best to them. Together they think about … and feel their way toward  …  how to be together in the time that is given to them.

No one, bearing witness from the outside, can say what is right for someone else. We cannot step into the path, and avert a difficult journey. Change what will happen. Only the family, the patient and their loved ones, sometimes with guidance, can choose their direction, do their best with what resources they have, and go wherever this path leads them.

Meanwhile, their medical caregivers? The ones who say there isn’t anything left to do? Likely they have tried everything. And despite this insight, some specialists continue to try to prolong life. Caught up in such extreme measures and momentum, medical caregivers … and sometimes guardians and patients themselves … may seek intervention. (Which could be a viable choice, but might also be more damaging. Such decisions are best approached with much consideration, since you can’t be sure of the results, or the cost to the patient’s wellbeing.)

In the optimal scenario, part of a family’s caregiving team is thinking about different values and assessing the whole situation from an alternate perspective. This person may take the opportunity to pause events. Often we need a trusted individual, hopefully a professional who is trained and ready to handle this form of advocacy, to take on that role. Perhaps this is someone neutral, from outside the family: a trusted mentor, counselor or medical practitioner. Who can credibly say, “Wait. There are other consideration here. Comfort. Dignity. Your belief system. Let’s balance the invasiveness of more treatment, more heroic measures, with measures that will preserve quality of time.”

The healing a family may seek, at such times, is not always recovery from the diagnosis. Not anymore. Instead you wish for a dignified and peaceful letting go, that involves family and friends, and makes the most of the time that remains.

Yet even the experience of being together, and letting go, can offer a form of healing. Solace. Peace.

In the case of families treated for cancer at Childrens Hospital Boston and Dana Farber, this journey is often guided by PACT, its Palliative Care Team. For many others, it also includes hospice professionals. When such a practice is integrated into the process, it provides immeasurable resources and comfort for families.

After all, in the face of such relapses, your concept of time changes. Your focus shifts. With additional support, the energy of the family can be aimed at the most important issues: emotional and psychological interactions with each other. Other bodily concerns can be managed by a team of people who are experienced in this area. Sensitive changes in moods, emotional state or mental outlook may also be tended to, by caregivers knowledgeable about what’s happening inside the patient and family’s hearts and minds.

Just for today? So soon after families have first heard and shared this news, and their friends are just trying to let it sink in? Perhaps they aren’t yet ready for all of those concerns and negotiations, those steps and decisions.

Sometimes, it’s too soon to cry. So you let the sky weep for you. Until your own tears come.

Finally, there’s this other truth. Believe it or not, the weather will change. The sun will flicker into view, grow hot and bright again. And even in this part of a family’s journey together, when people are probably starting to understand that they may say good-bye to each other, a person may want to stand in the light, turn her face to the sky, and laugh as loudly as possible. Cast a long purple shadow across the earth. He may wish to listen as the world echoes back his presence, while he has breath to move and shape the air, to fill the wind with the sound of a human voice, human joy.

This isn’t new wisdom, although I have learned it firsthand, over time, too. It is written in many sacred texts.

Ecclesiastes 3: 1-8

3 For everything there is a season, and a time for every matter under heaven:

a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
a time to seek, and a time to lose;
a time to keep, and a time to cast away;
a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
a time to love, and a time to hate;
a time for war, and a time for peace.

There is a time and a season for  grief and hope, sorrow and joy, anger and serenity. One follows the other. They are all integrated. Parts of the same mortal experience. And the same sacred journey. Over and over. Again and again.

Just now,  it feels comforting that the sky seems to weep for the families whose pain we cannot ease. And later on, that the same universe will grow bright and laugh with us, because that time will come, too.

Thresholds

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I read another post by Jane, the mom of twins whose family is now 2 weeks into their cancer journey. She described the raging steroid-induced appetite and cravings of her 4-year-old daughter. (I remember those vividly.) And the restrictions against many fresh foods, such as thin-skinned summer fruits like berries, some of her daughter’s favorites, which might contain bacteria that’s dangerous to the suppressed immune system of a child on chemotherapy, though not for healthy digestive systems.

Then she narrates walking through the store for a few meal items. Seeing fresh summer peaches. Juicy. Ripe. Now grocery-shopping moves her to tears.

Jane remembers before and after. Wants dinner with the four members of her family, safe and home again. An armload of fresh fruit for everyone. Not living with cancer.

For her family, like so many of us, there’s a “before” and “after.” A dividing line between what was normal, and what’s real now.

We all have those thresholds. An excerpt from a humorous novel recommended by the NY Times, Wife 22, says, “…she was always out in front of me. I had yet to cross all the thresholds she had crossed …”

Often we don’t even know we’ve stepped across through these gateways, until it’s already happened. Too late. You can look back over your shoulder. Remember. But what came before? It’s gone. Over. Done. In the past.

Something’s changed forever. Your world is different. You must learn a new vocabulary and language. Find your equilibrium in a place that seems to have different laws of physics, as if gravity has shifted, or the spectrum of light isn’t the same, or something out-of-whack now defines your perception.

Yet you will get used to it. Accept and cope with the “new normal.”

Other times this dividing line can feel like a border. You come and go. You cross back and forth between worlds. Visit the old reality. Then show your passpart at customs, and come back to the place where you’re now a member and resident (with all the rights and privileges, or lack, that comes in this new and an altered state of being, of living, of surviving).

Across the span of life, we’ll encounter many of these before-and-after dividing lines. They mark our rites of passage, like portals in great city walls. They let us in and out. They stand as testament to our coming and going. They represent old and new, past and future, then and now.

We can also label what we leave behind, and where we next arrived, as good or bad, right or wrong.

Some milestones are difficult, but natural. Even joyful. Necessary for our growth as individuals or communities. Generations share similar rhythms and cycles. Like choosing a partner. Having children. Sending adult children out into the world. Graduating from school. Earning your first paycheck. Opening your own bank account. Having your first home away from your family. Taking out a loan. Paying off a debt. Burying someone you love. Casting your first vote. Going to your first foreign country. Many of these experiences can be perceived as before-and-after moments.

Others situations aren’t expected or natural. They could be catastrophic events such as violent crime, terrorism, war, natural disasters like hurricanes, fires or floods, onset of disease, famine, drought, sudden loss of job and home, or other conditions over which we might not have control. They alter our worlds.

For us? Life before-cancer probably seemed better than after-cancer. For a while, anyway, I must have felt like Jane in the grocery store, staring at the peaches and remembering summer from a year ago, before cancer. Mourning. Comparing before and after. Wishing to go back to before-cancer.

But if this is the new reality in which you live, can you categorize all of it as bad and wrong? At first, you probably do.

After a while, though, you make a transition. You tend to accept and adjust. The “new normal” becomes more complex. Layered and nuanced. Not so easily defined as awful and terrible.

Rather, you’re simply experiencing life as you must live it now. Your “new normal,” the sometimes-unwelcome reality, must be learned, mapped and navigated. Hopefully there’s another dividing line, a border on the far side of the journey, that can be marked after-after. Like after-life-with-cancer.

But all the time between border crossings? As we trek between the threshholds that mark our lives? The time and space and distance between those milestones is when we do most of our daily living and being.

Along the way, you begin to find the goodness in every day. It’s not an innate skill, it’s a lesson you learn to keep your internal balance. You find light and hope. The raw jokes. The simple games. The deep conversations. The amazing spirit. The unexpected companionship.

Sure, in cases like cancer or diabetes or other illnesses, or conditions like unemployment, addiction, bankruptcy, survival of assault so many other unimaginable situations, it would be nice if you never had to go there. If you didn’t step through the gate or over certain dividing lines. But that’s virtually impossible.

All of us have thresholds that define our lives. That mark the territory of before and after. The person on far side of the border is different than the one who hasn’t yet crossed over.

Maybe the aisle of the grocery store is when Jane realized, again, that she’d crossed the line between before and after. I have my own places where I have stood, and known that life was different forever. So do you.

Some of them move me to tears. Sorrow. Others make me smile.

Choose Your Ground

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For many reasons, my friend Rebecca Gibbs is on my mind today. In part, because her daughter Anna wrote a beautiful poem about our family, which I hope to share in the future, with her permission. Perhaps because her husband has been working in our neighborhood, overseeing a town project. Also since I have a stack of books borrowed from Rebecca’s library — stories we had discussed — and some that I just finished reading, so that it felt as if our conversation has continued over the past several months. And maybe because her mother is a good friend who also attended graduate school, and is encouraging me on this adventure. And as I plan for classes in the fall, I’m encouraged because Rebecca attended Harvard University; that was one of the stories I was privileged to capture on videotape one sunny afternoon, as she made recordings for her family, about a year before she died.

Of course, she’s in my heart, because she and Jessie shared the journey through cancer, and trips down to Dana Farber. Rebecca G. and I understood each other in a unique way … she was a mother who faced the knowledge that she would leave her children before she was prepared to do so, and I was a mother who had lost one of my children much too early.

Her presence in my thoughts was a sharp contrast with the scripture I heard in the Meetinghouse today. The story tells of two miraculous healings.

In the Biblical text from my faith tradition (Mark 5:21-41), Christ was asked by a father named Jairus to come heal his dying 12-year-old daughter. Crowds followed him. On the way, a woman, who had been isolated and gravely ill, worked her way through the crowds and touched his robe. Christ felt energy go out of him, and knew someone had been healed. After he spoke with the woman, and listened to her story, friends of Jairus rushed up to say that Jairus’ daughter had died. Yet Christ promised that the child was merely sleeping, not dead. He continued to Jairus’ house and … “42 He took the twelve-year-old girl by the hand and said, “Talitha, koum!”[d] which means, “Little girl, get up!” The girl got right up and started walking around.”

Admittedly, I felt angry when I heard that scripture. Bothered. Maybe just momentarily, but honestly, it’s always there, at some level. Where was that promise, where were those words, in my family’s journey through cancer? Or Rebecca Gibbs’ journey? Why are some healed in their bodies, and not others?

Wasn’t there a “Talitha, koum!”for our child, too? And others young daughters and sons? Or adults, because we are all someone’s children?

I don’t often allow these thoughts to have much room to wander around and be expressed. They’re futile. They’re raw. They aren’t tempered by everything else I know and believe. They grow out of the fundamental outrage and sorrow that is always, even a little bit, part of our consideration of Jessie’s life and death. I wouldn’t be honest, with myself, or anyone else, or my Creator, if I didn’t say so.

I wish, and I know others have wished also, that “Talitha, koum!”had been our promise. Our story. That we could be witnesses to bodily healing through faith.

And yet as one wise woman of faith, Sister Leonore, has reminded us more than once, Your prayers may be answered, but not always in the way you expect. Perhaps “Talitha, koum!” is different for some of us.

The Meetinghouse, restored over the past several years by members of First Church’s congregation. Now in use again, decades after a fire caused its closing.

Certainly that was the challenge that Rev. Rebecca Pugh faced today, as she grappled with that scripture with us. We met today in the small Meetinghouse, a freestanding structure near our larger church, which has undergone its own journey of healing, because it was badly burned decades ago. It has slowly returned to usefulness through years of thoughtful restoration at the hands of many congregation members, so that it is available again to be used for summer worship.

In that freshly-healed room, small enough for a modest summer congregation to gather, Rebecca Pugh looked at the closely-clustered group of friends and members as she talked about the scripture, and those miraculous healings of Christ. She was careful with this topic, because she recognized that it was sensitive.

You see, I’m not alone, wondering why such healing miracles didn’t happen for each of us? I sat in a room filled with people who understand, quite intimately, what it means to live with broken bodies or lives.

Linda listened from her wheelchair; she was paralyzed ten years ago in the same automotive accident that took her husband’s life, and changed hers forever. Nearby sat a young visitor who is deaf. Others in that gathering attend regularly, and serve in leadership roles, yet live with chronic conditions that range from cancer to immunosuppressive conditions. Scattered among us sit those who have overcome eating disorders or reclaimed sobriety, yet will always struggle with these challenges. Of course, some among us are otherwise psychologically or emotionally wounded, too.

Don’t all of us wish we’d felt the rush of restorative power upon touching a Healer’s robe, or heard “Talitha, koum!”as a child rose up from the brink of death? Instead, many of us live inside slightly imperfect or very compromised bodies, or function despite deep connection to other losses and traumas.

We try to find comfort in what Rev. Rebecca Pugh identified as spiritual healing. Because we don’t all receive miracles, do we? At least not in a form we immediately recognize. Although maybe, when we reframe the story, and look at it differently, there’s a miracle anyway.

As Rebecca Pugh pointed out, our experiences are sometimes like the scriptural account of the woman who pushed through the crowds to touch Christ’s robe. We may rely on the courage of connection to this community and our Creator, and the resources that those give to us, seeking whatever hope could be gained there.

As you look around, you don’t have to read the Bible to see such examples. Sitting in that old-new Meetinghouse, its fire-ravaged scars still part of our history, its structure shored up and reclaimed to be purposeful again, we could see the same lessons visible in each others’ lives. Around us are living mentors, teachers, and inspirations. We are privileged to know people who wake up each day, inside bodies that don’t do what they were designed to do, and yet find a way to reach past those limitations to be part of something bigger, something more, and find meaning in lives that are blessed in other ways, if not by physical fitness and health.

Yes, I wish we’d received healing miracles. But we didn’t. Not that obvious kind, anyway.

Like the people in my congregation, Rebecca Gibbs was more than my friend. She was also, I realize, my guide and teacher.

She thought past her own cancer, which was progressing, transforming and diminishing the length of her life. She considered how to heal her family, too, even after she was gone.

One way that she tackled the transition from her presence in her family’s life, to her eventual departure, was to invite her family up to the Highland-Cowles cemetery. As I remember this story, which she told to me, though I recall it imperfectly and secondhandedly, she had an outing with her spouse and two children. Up under the same row of maples where Jessie’s ashes are now interred, she spent time with them, admiring the view, the trees, the setting, talking about why she liked that spot.

She created a living link to that spot, where her remains were later buried. In that way, her family had her own words, her own feelings, and her living presence imprinted there, as part of their connection to the site they had selected. She hoped they would go up there, and when they visited later, be comforted by that first visit with her.

Rebecca Gibbs chose her own ground: soft green blades of grass and occasional upheavals of knotted tree roots, sheltered by an arching canopy of verdant whispering leaves and a chorus of singing birds. She stood there, above her own eventual passage, and claimed it. Made it part of her living narrative, to give as a gift to her husband and children.

Rebecca G. and I also found it comforting that Jessie and she would be close to each other. Near each other, between the stately the row of maples, overlooking the town. Rebecca believed they’d be near each other, both here on earth, and wherever they next sojourned.

Part of me will always ache at the words in the scriptural account that cried, “Talitha, koum!”Because the way my younger daughter “got up” was to leave this life, and move on to another place where I cannot yet follow.

And yet, I also know, and assure you, that there are many more layers to our response to Jessie’s life and passage. I believe that part of the answer to our cry for healing, our prayer, was the way that she and my friend Rebecca G. each lived beyond the limits of cancer, and made us pay attention, and realize that we can make a difference regardless of how short or long we live, how small or large our ways of reaching out to others.

And the same is true of those people I witnessed in the little white Meetinghouse today, listening to the anecdote of miraculous physical recovery, when some of us won’t ever have that experience in this lifetime. All around me, people continue to live boldly and brightly, or quietly but visibly.

Whether each of us intends it or not, we become mentors for each other. Examples about how to make purpose out of unfathomable circumstances, how to find grace and hope when all seems impossible, how to keep going when it seems there are too many obstacles, how to hold on or let go, how to be part of this community, this experience, this life together.

I also realize that the promise of healing – physical or spiritual — doesn’t mean you won’t hurt anymore. Or carry scars. Or continue to struggle with old habits and relapses and cravings. Or have times when you fall into dark places, and come out again.

The promise of healing is there in the faces gathered to listen to the stories in Mark. It’s visible in the lesson of people who show up and claim their chance at healing and connection. It’s about trying. Continuing. Being present. As much as possible. In whatever way is meaningful and practical.

Each of us, in our different ways, claims our ground. Creates living stories that will later become memories, and heals self and others – at least emotionally and spiritually, if not bodily, as much as possible – here and now. Again and again. Maybe on velvety green spot beneath towering maples. Or inside the reclaimed walls of the Meetinghouse. Or somewhere else along the way, on our different journeys.