Do Good to Feel Good, Part II

Now I'd like to play a couple rounds of Devil's Advocate.

Let's put it on the table. Is there such thing as too much giving? After all, some of us are already helping people. All. The. Time.

We volunteer at the retirement home, we bake for the neighbors. Perhaps we run a little NPO on the side that distributes funds and clothing, or join every other community hesed committee, or run off to a wedding hall in the middle of the night to pick up and distribute the leftover food.

Or maybe we do some or all of the above, PLUS we've found our life's calling in one of those pointedly-named Helping Professions --as a social worker, therapist, nurse or charity office manager. What could be better? We are assured an opportunity to help others, every day, and often in the most moving and meaningful ways. We take care of others' bodies and souls. We sooth mental anguish and relieve financial burdens, advocate for the disenfranchised and restore human dignity. We do all of this without pitying or patronizing.

So is there such thing as helping too much? We love our life's work because it is life-giving, meaningful, significant. We believe our professional role is right and yes, a kind of moral obligation. But we often resent the conditions: Low pay, little recognition, case overload, stressful work environment.

I'm thinking about yet another phenomenon. How do you do it, how can you work here, with such sick kids? someone will query in admiration. Kol haKavod (Bravo!), that's amazing! They don't get it. I can do this work because love this work, and when I'm doing it, my life feels meaningful and significant.

The problem comes later, when I get home. Sometimes it hits me, how sick those kids really are, and I am exhausted. Weighing me down are all the patients I didn't have time to work with. The parents I didn't get back to. That uncomfortable exchange with a short-tempered staff member. The feeling of being constantly on call -- encouraging, empathic, organized and authoritative -- but not too authoritative. These things can all but wash out the day's many successes.

Worse, I often find myself unable to regroup and focus by the time I've finished my commute home. My own kids need me. They need someone to give them lunch and watch their gymnastics practice and blows their noses and help with their math homework. They don't feel my own need to go to the bathroom and then sit down for five minutes, alone, over a hot drink. Whatever went on in my day until now is completely irrelevant. They expect focused, energetic Mommy, ready to go and full speed ahead.

The work itself is not the problem, it's maintaining my strength to give and give, all morning and afternoon, and then give again into the evening. It's keeping up the required enthusiasm at home to do all the day-to-day tasks, with the patience my kids deserve from me.

Sometimes I fantasize leaving for a well-compensated, "normal" office job, or locking myself away in my studio, "arting" around all day. I imagine opening a small craft business, or private therapy work with a limited number of clients. But getting down to it, I know I would only do such a thing if I were to reach the conclusion that the price had gotten too high, that I could no longer keep up both ends of the giving spectrum, and that giving at work was always at the expense of giving at home.

And here's where I have to admit it. For all its difficulties, hospital work gives me a sense of status and accomplishment that, for whatever reason, I cannot always seem to muster at home. Maybe that's the fallout for some of us girls who grew up in the Seventies on Sesame Street and Free to Be... You and Me. Or maybe it's just that at work, I'm an experienced professional, a figure of authority, a source of knowledge and understanding, while at home, I'm "just" Mom.

Their only Mom. Full speed ahead.

Keep the balance,

ALN

____

For more on why we help one another, this is another interesting NYT piece, especially the part about the role of the sclera (whites of the eyes) in human altruistic behavior.

Don't Have the Answers, But Glad You Asked

The Challenge:  Describe your job in one sentence or less.

My Answer:  My job is to listen to kids.

OK, so sometimes "listening" comes in the form of watching them draw, or joining them as they play, or helping them surf the net, or just sitting nearby while they read.  And, of course, the kids I listen to are sick, or are recovering from being sick, or were sick in the past, or are sick again.

Leave out that last part about the sick kids, and replace what's left with the additional cleaning, laundry, dishwashing, fetching & carrying, and we've just described the Second Shift, a.k.a. The Home Front.

I admit it:  Part of me has been waiting for years for my kids to get a little older, so we could start having some real conversations, the ones that extend beyond "Why can't I have a cookie? But why?!?"  It seems that time has arrived, and the questions have been rolling in.

Elder Princeski will be ten soon, and her questions tend to reflect her newly-developing empathy and Theory of Mind.  Always the Imp has just turned six, but her line of questioning (once she gets past all those unreasonable demands resulting from her sugar addiction) has always pushed the envelope, amplifying her imp-like attributes.

Yesterday afternoon I decided it was time to euthanize the poor goldfish who, having displayed multiple signs of illness for nearly half a year (and had long since been placed in isolation from his healthier peers), was now showing acute signs of imminent status change. 

Elder Princeski took an interest and even assisted.  We used an ice-water bath, recommended as the most humane method by Dick Mills in You and Your Aquarium (London: DK), while Always hid herself away until the deed was done.  Later, of course, there were thoughts and reflections on the matter, which surfaced today during Shabbat lunch.

Always the Imp:  Mommy, when you die, I want to keep the whole house for myself.  But I don't need the things inside it, you can give those to somebody else.

Me:  [Which Left Field did that one come out of?  Oh, maybe it was the fish...] Why?  Do you want me to die soon?

Always:  Of course not, but when you do, much later, when I'm already big...

Elder Princeski:  Mommy, I don't want you to die for a long time... but when you do, I'll keep the things inside the house.  I won't need the house itself because I will be married and my husband will buy me a house.

(Short discussion on the topic of religious vs civil inheritance laws.)

The conversation then evolved into a series of questions about Grandma (that's my 95-year-old grandmother -- see here), wondering how much longer she would continue to live, and if she wants to live much longer, and whether, were she to become very sick, dependent, and pain-ridden, she would choose to die (from what she has told me in the past, I wouldn't put it past her).   

We did our best to answer all of these clearly and honestly, with equal measures of optimism and realism.

Then there were questions about death itself.  What does it feel like?, and Does it hurt? and Do people know they're dying?   I told them about the reports I had read on near-death experiences, in which people described feelings of well-being, comfort, and being reunited with lost loved ones.  I told them that no one could prove whether these things really happen, but that many people felt and believed that this is what had happened to them.

Throughout this conversation, my internal voice was asking how much of an influence my Day Job was having here on the Home Front.  I think about death a lot, because I encounter death a lot, and so it is on my mind --  sometimes at a frequency that surpasses what I would consider to be a level of healthy denial.  

I try to keep that to myself, at least around the kids, but as they grow older they develop an awareness of what I do for a living;  Elder Princeski has even accompanied me to work events a couple of times. Sometimes they ask questions about work, and while I don't shy away from answering, I try to keep my answers short and to the point.  

The thing is, kids know about death.  They think about death.  They wonder about it, and they have questions.  At a certain point, they lose their dog, or their grandfather, or their neighbor, or their parent, and they learn that death can't be avoided.   

All of this obligates us to invite their questions, listen to their concerns, and share some answers -- gradually, thoughtfully, and straightforwardly.  Which we tried to do this afternoon.

Suppertime brought with it a whole slew of questions, this time about Down Syndrome, its causes and effects.  For another time...

Keep the balance,

ALN

Into Another World

(If you missed it, see Maybe I Should Write About It).

The view from their living room window -- dry hills interspersed with grasses and low-lying bushes -- was oddly familiar, in that I could have mistaken it for the California of my childhood. 

I had parked the car on the street above.  There was plenty of parking;  most residents in this area don't know how to drive a car and cannot afford one.  The early afternoon air was hot and still.  The inside car temperature approached that of an oven from the moment I shut off the engine.  

I crossed the sidewalk, paused, and headed toward the double flight of stairs.  To my left, three middle-aged, dark-skinned men squatted over a flattened carton, dealing cards.  The stairs, framed by simple metal railings, abutted a series of dirt-filled, half-meter brick tiers in an uneven stack like some child's haphazard block construction.  They led me down to one of a series of dreary dun developments, each four stories high and six living units across, fronted by an empty patch of dusty soil.  Most of the buildings carried a rusty sign vainly remarking a municipal-sponsored refurbishment in 1976, and despite this, they all looked as though they had somehow survived five decades or more.

As expected, there were no signs pointing the way toward the house of mourning.  The numbering was haphazard and I could not find the right building.  In response to my query, an older man placed his hands on my shoulders and literally rotated my body to the right and downward.  

His murmuring suggested I had a ways to walk, and the apartment I sought was in fact the last one in the staggered row of developments.   As I followed along the row of buildings, there was a smell, of pungent, unfamiliar spice and slightly fermented grains, which seemed to grow in intensity as I approached the entrance.

The door of one of the ground-floor apartments had been left wide open, and the spotless living room floor reflected an image of a hefty woman lounging on her sofa.  She jumped in with an answer  before I could get the question out.  "Where -- ?"  "Up on the third floor."

The door was closed and had no markings on or around it, save a mezuzah with a cheap plastic cover.  Inside the house, the extended family -- his mother, sister, two brothers, four aunts, three uncles and a cousin -- nearly filled the small living room.  His mother had a black mourning cape draped over one shoulder, and as I entered she glanced up, sighed and shifted the cape to her lap, stood, and clung to me.   She sat down, sighed, and offered me a chair near the middle of the room.   "My heart..."

A foursome of aunts and uncles sat around a coffee table playing cards, throwing each card onto one of four piles with an aggressive THWAP.  Somehow, it felt only slightly out of place.  His sister poured me a cup of cola, which his mother refilled after every sip I took.  She exchanged a few words with her daughter.  I was waiting for a translation, some statement about how it was all over, or referring to his time in the hospital.  But no.

He had some new clothes, the sister related.  They're in G's office.  Do you think you can talk to him about getting them back?

Of course.  His brother would be needing those clothes, so carefully chosen only two months before.  

The mother continued her conversation with an aunt who was sitting across from us, while I talked to the sister and made a few phone calls in an unsuccessful attempt to contact the cable TV representative and ask him to come pick up the cable box which nobody in the household now has a use for.  

Sometime later, we exchanged good-byes and I made my way back down three stories, along six dreary buildings, and up two outside flights to street level.  I got in my car, drove out of the neighborhood and back into to my infinitely more complex, familiar -- and for now, sadder -- world.

Keep the balance,

ALN

A Room of Everyone's Own

When thinking hospital, a lot of things come to mind, and not one of them is "privacy."  

We are always citing patients' privacy rights -- the subject resurfaced as a welcome reminder in a recent department meeting -- along with the acknowledgement that while everyone acknowledges the value of medical secrecy, standing up to its principles are no easy feat in a small, everyone's-my-cousin environment such as exists in our humble corner of the Middle East.

Then there's the flip side:  Where do hospital workers go to preserve privacy -- their own, their colleagues', their patients', their patients' families'?  

This morning after a meeting, I returned to my department via the stairs.  Between two of the upper floors, a tech staff member was lying against the stairwell wall, coffee in hand, three sections of the newspaper sprawled across several steps and over a chair on the landing. One flight later, a young man -- a volunteer, perhaps, or a pediatric patients' older brother -- had his waterproof tallit / tefillin bag resting, open, just under the handrail along my right side, while he was making his way through shaharit (morning prayers) there on my left.

Yesterday I walked into our department classroom a few minutes into our mid-day break, only to find one of our teachers working with a small patient while colleagues sat drinking coffee across the table.  

Aren't you going to take your break now?  I asked the her.  

She nodded at her pupil with a knowing smile.   I'm taking a sort of learning break, she replied, here with H.

I'll be the first to admit it:  I'm not the best example.  I don't always stop to take a methodical, sit-down-and-close-the-door-behind-you coffee break, and anyway, there aren't too many spaces in the department that provide the right conditions for such an effort.  As I've lamented before, I don't have an office.  For this reason I can (and have) spend up to ten minutes looking for a semi-private corner of the department to sit down with a staff member, for a conversation of the same length.

So where should we go to hold a private conversation?  The archives?  A stuffy, windowless security room with little ventilation to counter the stifling odor of multiple files.  The chairs in the waiting area across the hall?  Patients and staff walk through there freely, always within hearing distance.   I would even try the stairwell, but what an echo.  No privacy there.  

Only one other room option comes to mind.  It has a lockable door, but alas, it only seats one... 

Keep the balance,

ALN

Scales are Tipped Down, Way Down, by the PA

Since beginning pediatric hospital work over a decade ago, I've shown a tendency to divide circumstances -- that is, reasons for hospitalization -- into two artificially neat categories:  Man-made, and G-d-made.  

Examples of the former include falls from upper-story windows, hot-water burns, and car "accidents."  The latter run a spectrum, from "less serious," (i.e. dangerous but curable) illnesses like RSV, Hanoch-Schlein and cellulitis, to acutely life-threatening maladies like Crohn's, SCID, CF, and acute myeloid leukemia.  

Believe it or not, in many ways I had a much harder time in Pediatric Surgical, working with kids injured as a result of the "man-made" stuff.  Why?  I was constantly troubled by the thought that most of the injuries there were preventable;  Falls resulting from unsupervised climbs along an unfenced roof edge or an unbarred third-story window.  Shabbat kettle burns?  See Prof K's posts, here and here, for more on that.  (Yes, I've referenced these before, and I'll probably keep doing it until the problem is no more).  Car-related injuries?   I won't start ranting here about street safety or seat belt use, but please pretend I did.

As for the G-d-made part -- we can't prevent that stuff.  It's just not our jurisdiction.  We can only try to cure it.  And if we cannot cure a child's illness, we can still try to help that child find comfort and meaning until the end.

But now we are stuck in a new situation, where life-threatening, G-d-made circumstances have been further complicated by man-made decisions.

I am, of course, referring to the February 1, 2009 decision of the Palestinian Authority to cease nearly all payments to Israeli hospitals, thereby cutting off hundreds of Palestinian children (and adults) with life-threatening illnesses from the medical care they need. 

  

Let's not turn this situation into another political discussion.  Because for me, and so many others, this is not a theoretical situation involving some unnamed, unknown enemy.  This is a new reality, where over fifty children, all of which I know personally on one level or another -- some for several years now -- have been given a death sentence by way of a governmental policy of collective medical neglect.

When I let myself think about it, or when circumstances force me to think about this new reality, sadness creeps in and hits me, literally, in the face.  Our department is half empty, which for us staff members could be viewed as a glass half-full, since we've been working at a slower pace these past few weeks and can take a few minutes to breathe now and then.

But then someone like A -- a beautiful, bright and sensitive teenage girl whom we have been treating for a leukemia for the past four months -- suddenly shows up in our department with a nearly lethal systemic infection because she no longer had a commitment from the PA to pay for her treatments.

What about all the others?  Some of them are in touch with us by phone, while others have been so difficult to contact, it's as if they have disappeared into thin air.   All are pleading desperately, crying at the desks of the PA bureaucrats who have the power to make a life-changing decision but choose not to.  These officials have claimed they will sponsor parallel treatment in an Egyptian, Jordanian, or even Europe -- anywhere but Israel -- but with very few exceptions, we've yet to encounter evidence that our patients are receiving any treatment whatsoever.   

Every once in awhile a rumor flits through the department -- that so-and-so has died of a deadly infection in some PA hospital somewhere.  So far these rumors have proven false, but it's only a matter of time before they are not.  Chemotherapy protocols are measured in days and hours.  A lost week is an acute risk;  a lost month, or even a fever, is a death sentence.  

If we could treat for free, we would.  But we can't, because the funding would come out of our department budget, such that within a month even one patient's treatment would empty the coffers and shut down the department.  A few of our staff have even dug into their pockets so that certain individual patients could have this one medical test or that course of life-saving antibiotics.  A few miniscule drops into a very deep bucket.

This past Monday we were all relieved to learn that A's family managed to confirm her East Jerusalem resident status, allowing us to continue the treatment that will, most likely, save her life.  This morning, the Palestinian Authority's Committee of Medical Exceptions purportedly met to review the list of children requesting funding in to continue treatment in Israeli hospitals for long-term, life-threatening illnesses.  

I can only hope that tomorrow morning, all of our lost patients will be knocking down our doors, PA funding commitments in hand.

Keep the balance,

ALN

____

While this situation has affected patients in hospitals throughout the country, for whatever reason most of the (limited) PR refers to Hadassah Hospital in Jerusalem.  See the NY Times piece here, and the JTA piece here.

The Many Ways It Touches Us

In Israel, six degrees of separation is going way overboard.  One or two usually suffices.  

I'm relieved that -- for now -- my family and I have remained one or two degrees of separation from unending worry and shocking tragedy.  But within two degrees of separation, there are far too many examples. Here are a few:

I.

One co-worker, H, had just returned from a family holiday in Eilat over Chanukah, only to hear that the first missile to reach a house beyond Sderot crashed into her sister-in-law's apartment, injuring their teenage daughter.  A week afterwards the girl was out of the ICU and -- thank G-d -- on her way to physical recovery.  Her emotional recovery will take much longer.  Two weeks later, H receives word that another relative, a nephew, has been injured and evacuated.   One of her own children is serving, and she knows what could be.  She tries not to think about it.

II.

A classmate leans over toward my computer last week in the middle of class.  She has left her kids with their regular "babysitters," their grandparents -- her own parents -- in Be'er Sheva. They watched the missile fall into the kindergarten across the street, felt the BOOM rock their apartment.  Now they're afraid to leave the house, but this evening they've decided to spend a few minutes in the mall down the street, just for some air and a change of surroundings.  Now my classmate has her mobile phone in hand;  she insists on checking the internet news every few minutes.  Just in case.

III.

My cousin sends an email explaining that while her son, recently drafted, is still in training and therefore will not be going into Gaza, he is often sent to the border to provide security and support to the soldiers.  One of his closest friends lies in the ICU, critically injured after fighting in Gaza.  His friends are filled with worry and guilt that they cannot be by his side.

IV.

My friend and neighbor S. commutes to Be'er Sheva every morning.  She relates the time when she was mentally preparing herself;  She rolls down her car window and turns up the radio, should there be a warning siren during her drive.  No sooner is the window open and

 rrrrrrrrrRRRRRRRRrrrrrrrrrRRRRRRRRRrrrrrrrrr.

She stops the car, lies down alongside it, hands over her head and neck.  She explains to me that the missile shrapnel flies up to a height of 30 cm, so lying down flat is pretty good protection. She notes that our bomb shelter room ("Mamad," ממ"ד), like theirs, is on the North side of the house, so it will provide pretty good protection should the missiles start raining down on us. Meanwhile, she watches missiles falling over Be'er Sheva from her tenth-story office window, keeps her purse accessible under her chair, and cuts off telephone calls to run to the shelter when the siren wails.  I express amazement that she is still willing to come to work every day.  It's not the same as living there, she reminds me.  I come home to quiet every night.  It's not like my kids are sleeping all together with us in the shelter and we're waking up several times a night to throw them down onto the rug.*

V.

Another coworker, N, is safe (for now).   Her family is not.   She lives in Jerusalem.  Her brothers and sister and their children live in Gaza, along the coast.   Her phone is on all the time.  Her family has no electricity.  No heat.  They don't go out, to work or school.  Their only source of information is a small, battery-powered radio, which tells them whether the most recent bombings and incursions are anywhere near their home.  Every time N talks to her brother, she tells me, she makes sure to say a real good-bye.  She is afraid it will be the last time. 

VI.

A senior staff member is as close to beside herself as I've ever seen her.  Her son is being drafted tomorrow.  He will not be in Gaza, but her thoughts are there.  She doesn't spend too much time watching all those films showing soldiers and bombings and house raids, but she cannot stop thinking about it.   We can only imagine what's going on there, she tell me, emotion filling her voice.  Our army has killed 600 of them.  Six hundred.  I can't get my mind around it. Women, children.  Families.  Here I am, safe in my home, enjoying my every day activities, while over there... Nothing good ever comes when we fight.  Their next generation will only learn more hate.

* * * * *

A friend's husband, a security expert, is in the reserves along the Gazan border and comes home every night at two in the morning.  A psychologist colleague has been called up to counsel traumatized soldiers.  An oncology patient from Gaza in the hospital for treatments, worried about his father and siblings while facing a completely different threat to his own life.  Countless colleagues have children in the army.  They jump whenever their phones ring, half-apologizing for their edginess.  We give them knowing looks and continue our day.

  * * * * *

This war -- like all wars here -- has been full of the kind of wrenching decisions, moral dilemmas, and wide-scale destruction that hurt to contemplate.  Eight years of missiles onto our compatriots in Sderot?  Too much.  The killing of children forced to be human shields? Disgusting.  Our soldiers running from house to mosque, flying overhead, facing split-second, life-threatening decisions?  Painful.   I want it to stop, want a modicum of quiet, and safety, and security, and reason, to reign.  But it doesn't.

For now I have avoided the more graphic media, the photos and films.  I read some Hebrew-language articles, and tune in to some of the American media.  Knowing what is going on, on both sides, is terrible.  Often I find it hard enough walking through those hospital doors every day, and I'm not looking for more questions no one can answer.  I understand why we had to go in there and try to put an end to it.  But I worry, because I know that all that violence and destruction will not stop the hate, and hate keeps Hamas going, and going. 

I go to bed every night to the slightly-faint echo of bombs, and wake up in the morning, in the dark, again to the sound of bombs.  I try to fit my mind around the simultaneous feelings of relief and sorrow that follow those sounds.

I think Shoilem Aleichem (via Joseph Stein's screenplay) put it best in our favorite classic, Fiddler on the Roof:

Townsperson: Why should I break my head about the outside world?  Let the outside world break its own head....

Tevye: He is right...

Perchik: Nonsense. You can't close your eyes to what's happening in the world.

Tevye: He's right.

Rabbi's pupil: He's right, and he's right.  They can't both be right!

Tevye:  (Pause). You know, you are also right.

Only, this is no outside world.  Not even close to six degrees' worth.  This is here, and this is us.

Keep the balance, and keep safe.

ALN

"You Should Have Met Me Before..."

I'd been hearing great things about a certain patient, a young woman, but my previous attempts to meet her had fallen on bad timing.

I always get a little nervous approaching a patient for the first time... I never know who I'll be meeting, what state she'll be in, especially at the early stages of diagnosis.  Overwhelming emotional storm?  Breakdown?  Confusion?  Denial?  Contradictory, shifting affect?  All of the above? Will she even register our introduction, or -- often as not at this early stage -- will she mistake me for a physician or nurse, and set forth a litany of disjointed questions about medicines, central catheters, fevers? 

But yesterday morning, there was G, smiling, inviting me into her little corner of the outpatient clinic.  Is this a good time? I ask.  Of course!  Why not? is her immediate answer.   She is already succumbing to the soporific effects of the meds she's received, but with little encouragement she gushes into a brief description of herself.   She has this job and that hobby. She is involved, engaged, active.  

You should have met me before.  I was the athletic type.  I used to run, do aerobics all the time. I was a teacher, I had a whole class of kids, ran a whole educational program.  I love art, love to write.  

I'm trying to keep up, listening at 100 km/hr.  I tell her we can offer her art therapy, bibliotherapy.  Meanwhile I'm noting all the was's and used to's.  That part has me a little worried;  she's only just begun treatment, and she's already left central parts of her identity behind.  She is clearly a doing person -- and for now, she is not doing, therefore she does not feel fully herself.  I can relate, all too well.   

I weigh my options.   Do I remark on the used to's, thus beginning the teeniest intervention without having had the time to really meet her, or do I let it go and make a note for later?  

Her oncologist steps in to inquire about her general welfare, and I gain a few more minutes to think, listen and decide.   I am impressed with how readily and directly she describes the recent state of her digestive system.  After all, he may be a physician, but he's a guy, and she's a young woman... who seems to understand the value of accurately reporting her physical state.

He goes, and we resume our conversation.  Meanwhile, I've made a decision.  You're still a teacher, you know.  You're on a break from teaching, but you're still a teacher.  And it really shows that you're an energetic, athletic person, despite all these tiring treatments.  We move into a brief discussion of what it means for her to be forced into this unwanted break from her active life.  At this first glance, she seems to know exactly what her limitations are, and what she still can do.  She is eager to move forward while she can.

I want to learn some art techniques, and I want to meet the bibliotherapist.  We should get started, right away.   But for now you'll have to excuse me, I'm a little stoned from all these drugs, I think I'm falling asleep...

I tell her it's been a real pleasure meeting her and excuse myself.   Her enthusiasm and optimism are contagious, and I find myself smiling as I exit the room.  I'm so happy to finally meet her,  I mention as I pass her oncologist. What a fantastic person. 

He looks up.  Don't get too attached.  Looks back down at his paperwork.

A sudden rush of air, and all that contagious enthusiasm has collapsed.

He means well.  Maybe he was just trying to look out for me, or for himself.  And yes, I am aware of the dangers of her illness.  But getting attached is part of the work.  I can't do my job without it.

Anyway, it's too late.

Keep the balance,

ALN

Be'er Sheva: One Principal Rewriting the Status Quo

(Read this post first if you haven't yet caught my posts about last month's in-service in Be'er Sheva).

We are traveling by air-conditioned bus, having driven Road 60 out of Be'er Sheva and east onto Road 31, north of Be'er Sheva, toward Arad and the Dead Sea.  We have now turned right off the paved main road and I wish we were back on it, since all this bouncing along an exceptionally bumpy dirt road, even at 20 km/h, has made me completely car sick.  As I snap photos out the window, I am trying not to throw up all over the vehicle's well-preserved upholstery.

Welcome to the pezura.  The word pezura -- פזורה -- is Hebrew for dispersion and refers to approximately half a million dunam (equivalent to about 175,00 acres) of unrecognized land, containing 50,000 unlicensed houses, and many, many more people, spread throughout the desert.  Within the Negev there are seven recognized Beduin towns:  Rahat, Tel Sheva, Kseifa, Arara, Segev Shalom, Houra and Laqiyya, and half the southern Beduin population lives within these towns (reference here).  As for the the other half, they live throughout the Dispersion, where there are no electricity lines, no water pipes or central sewage systems, no garbage collection.  With very few exceptions, there are no official schools. 

In the middle of all this brown, dusty emptiness is one exception, a literal oasis of a school. Amal is Arabic for hope, and the Amal School is aptly named.  Kids from kindergarten through high school arrive here every morning by bus, from all over the pezura.  The long, dusty road is literally in the middle of nowhere, and if a child misses the bus, he misses school for the day.  

We are welcomed at the entranceway and led across the school's courtyard --  an expansive pebbled area containing trees and a paved central area -- and into the library, where drinks and cookies have been set out for us.  

The school principal enters and apologizes for not having met us at the gate. He introduces himself as Khalil Elkorm, now in his twelfth year as school principal, and his twentieth in the Israeli Education ministry.*  

His presence fills the room as he launches into an energetic talk about his educational philosophy, the main thrust of which is that schools must find a variety of ways to educate, beyond the traditional frontal teaching style, and that any new educational program, as good as it may sound at first, must be tested and adapted to the needs of the children in system, before it can be thrust upon them.  

Over the years, Khalil has helped to establish after-school enrichment programs, hot meal programs, and an on-site medical clinic so that the parents will be involved in their children's education, without compromising all that has been accomplished by the sectarian and tribal conflicts that would work in opposition to Khalil's educational priorities for his 650 pupils. When asked how he deals with the intergenerational conflict that must arise between these modern-educated children and their conservative parents, Khalil described in further detail how he learned the hard way, that the school must guide the parents, and not the opposite, or change will never happen.

Following our talk Khalil brings us to the kindergarten area, fenced off from the rest to give these youngest pupils a chance to have their own safe space before moving up to first grade.

Unlike the camera-savvy grade-school children who have already mobbed us, begging to be photographed, these little ones are still shy and wary of visitors, but after a few minutes their smiles break through and they are happy to have us watch them solve problems in small groups.

Back in the courtyard, Khalil explains that it is election day in the local towns.  In honor of this event, a group of older girls are conducting mock elections, standing in two straight lines as they wait to cast their vote the ballot box.

I'm pretty impressed by their ability to stand there patiently, and wonder how much of it has to do with the teachers observing along the sidelines, or whether, as girls, they have just gotten used to being told to wait their turn.  I think about the ramifications of what they are doing.  How many of these girls will actually get to vote in an election in their lifetimes? They face so many hurdles:  As women in a men-dominated society, and as an under-recognized minority living in unrecognized areas. 

Khalil is clearly very proud of his school and its accomplishments, and for him this means rejecting his society's status quo.  "His" girls are already voting, even if their votes will not influence this year's election.  

Keep the balance,

ALN

_____

*  Khalil gave me his full permission to be featured here.

Be'er Sheva, in Retrospect

It's been awhile.... all good things:  Family wedding coming up, work presentation last Sunday, and other details I won't bore you with.

If you're a regular reader here (kudos to you!) you're aware of my in-service training last month at Beit Yatziv, a continuing education center for teachers, located within a historical neighborhood of the southern desert city of Be'er Sheva.  It was my intention to blog live from down there, but they kept us so busy (classes from 8 am to 10 pm), with some rest and lots of food in between) that I couldn't keep up.  It was also very clear at the time that those moments between classes, lectures and workshops were digestion time for the brain.  The few posts I did managed from there are available here, here and here.

Meanwhile (yesterday afternoon, in fact) we met to kick off this year's series of bimonthly workshops on multiculturalism in the work place.  I and several others were pleased to learn that the emphasis of our discussions will not be limited to Jewish-Arab -- and other religion- and race- considered -- relations, but will also focus on organizational issues and the discrepancies between the hospital/medical organizational culture and our own educational culture within it.

Not all of the staff participants of the bimonthly meetings were present at Beit Yatziv, and the opposite, but as we begin this new series of meetings, the experience in Be'er Sheva remains at the forefront of my mind, with the field trip to the surrounding Beduin areas at the locus of that experience.

I'll begin with where we did not go.  We did not enter any private homes or tents.  With the exception of school children, we did not meet "ordinary" Beduins.  We met some of the exceptions;  the role models, the risk takers, the mould breakers.  All of them are well known in their respective communities, respected by some and resented by others, for daring to go against the grain and change the status quo.  In the next few days I'll introduce you to them, one at a time.  Stay posted.

Keep the balance,

ALN

"Maybe I Should Write About It..."

I know, we're not supposed to have favorites.  Or at least, we're not supposed to show them.

But I won't lie to myself, or to you.  I have favorite patients.   And they're not necessarily the sweetest ones, or the friendliest ones, or the ones that always draw a crowd of staff members and volunteers, because they're so darn cute.

OK, I like those patients, too.  I love them, really.  But they aren't my favorites.

My favorite patients are the ones who tell their stories, share their lives, plunge the depths, with an authenticity that astounds.  It expresses itself, often as not, through a mighty silence, a reclaiming of their lives via quiet refusal, or restrained acknowledgement.

T is nineteen years old.  He was meant to have graduated high school last year with a diploma and a qualifying certificate in electronics, but he didn't make it back to school to finish his senior year.  

Meanwhile his hair has grown back, springy dark corkscrews that he still feels a need to hide under a baseball cap.   During last week's visit he was short on patience, fasting before a procedure, so our conversation was brief and centered around Spanish football teams.

This morning, though, T is feeling much better, sitting in Outpatient waiting for his regular check-up, and --surprise -- he wants to talk.   I ask him about the Sidge festival two weeks ago, a holy day for Ethiopian Jews, during which they celebrate aliyah and gather to pray for all Jews to return to the Holy Land.   T claims not to know too much about it, then changes his approach.  

What kind of respect do you think olim deserve? he asks me.  Point blank.  Immigrant to immigrant.   No beating around the bush, and no whitewashing.  

I think immigrants like me, from the United States, get a lot more respect than immigrants like you, from Ethiopia.  

He responds by giving me one of his fantastic smiles that announces:  At last, the truth comes out!  We discuss the discrepancies, the race-based unfairnesses.  We don't get into too much detail, since T is the type that likes to hint at things before laying his trust on the line.  With him, you gotta earn it, over and over.

You know, when we get here, they don't even recognize our university degrees.   No, I did not know that.  I also had no idea that T attended school for the first time only after moving, at age twelve, from his rural village to the far away city of Gondar.  He's telling me this, and I'm imagining a preteen, illiterate village boy falling like Dorothy into a foreign world whose very name sounds nearly Tolkien.  In Gondar T studied math and learned to speak a few basic words of English, though this barely helped him two months later when he arrived in Israel.  My mouth was already too old to learn to speak right, he explains, sticking his tongue out and demonstrating the difficulties he had, shaping that adolescent mouth into the words of yet another set of foreign sounds.

How many times can one kids move?  Multiple times, it turns out.  Once in Israel, he moved from an absorption center in the South to a development town in the Center, to a dormitory trade school along the West Coast, and then... leukemia.  Back down south for treatments. Recovery, and back to school.

Relapse.  

New hospital, new people, new living situation.  T recounts each step but leaves the details behind.

I'm sitting there, trying to follow all of this while keeping track of the number of times he moved in a span of six years.  So far I've counted seven.

Eight, he corrects me, and hints that there were more, prior to his family's move to Gondar. He pauses.  I've been thinking, maybe I should write a book, about all those moves.  

Pretty impressive idea for such a private person.  You'd be good at that, I tell him. Especially since you've been through things no one else has.  He faces me with that intense glance of his. What do you mean?   

He's not looking for me to tell him something new, of course.  He's testing me.  Not as a rebellious teenager, but as someone who has been through so much, he's almost given up believing that anyone else could get it. Especially a Western immigrant like me, with my light skin and state-recognized diplomas.

Well, you're different from most of the other people around here, I continue.  For one thing, you come from a different place, and you can't hide that.  Everyone sees it, right away.  

Now T is staring. What else? he says, waiting, so I continue.  

Beyond that, you've been through all of this.  You know what to expect -- the treatments, the tests, the pain, the complications.   You understand the threat hanging over your head, better than you ever did before.   I pause.  But there's one more thing, the most important thing of all.

He looks astounded, transfixed.  

You're different from other people.  Your personality is different.  You see the people around you;  you see a lot and you notice things.  But you don't jump to open your mouth and talk about it.  You keep your observations to yourself, until you know you can trust someone, and then --  maybe -- you share your thoughts with that person.

His expression says it all:  This revelation, this conversation, is the real thing.  This person might just get it, just a little... so maybe sharing one's inner thoughts and feelings is worth the occasional risk.  

(It's a risk for me, too, not having a direct way of understanding T's thought patterns until he --  or I -- voice them.  A serious misreading of his emotional and cognitive process would only have further isolated him by enforcing his belief that others cannot understand him).

Later on, I offer to help T start the writing process by typing into the computer as he narrate. He hesitates.  As with everything else, he wants to think about it first, on his own, and get back to me. 

We agree to discuss the option the next time we meet.  

Keep the balance,

ALN

Live from Be'er Sheva 2 - Nationality and Identity

Our first session this afternoon focused on a historical look at the concept of nationality (לאום) and religion, and how there tendency in Israel to confuse the two.  Since this was a short introduction to a very broad concept, I'll try to get back to it in a later post.

We just finished a workshop run by two group leaders from the Merchavim Institute, an organization I was not familiar with until today.  They have developed a model for shared citizenship which I plan to peruse soon.

In our group of 25 women from different cultures, working in two hospital schools here in Israel, we met in groups of two, and later four, to share personal answers to focus questions such as,

As a child, what did you want to be "when you grow up?"

What family customs do you remember growing up, that are important for you to continue observing even now?

Which women in your life have inspired your identity as a woman today?

What are some the traditional ways a woman in your culture prepares for her wedding?

The conversations that arose brought forth some fascinating interchanges, and in the group discussion afterwards we came to the conclusion that as women, we had a unique ability to identify with one another and find similarities while simultaneously making note of the differences.  We reviewed the idea that each of us comes with our own home-grown assumptions that we take for granted as the way to do things, and only when we meet someone with a different approach, can we begin to examine our own from a more removed perspective.

Toward the end of our recap, one of the group leaders posed a question:  Did you hear about anyone's family traditions that you wish you could adopt (or adapt) for your own?  

I was pretty surprised by some of the answers.  A couple of the Muslim participants said that they really liked the idea of Shabbat dinner, and that they wished they had a weekly event that would bring their families together for a meal.

Later in the afternoon we started out with a game, where we had to make our way down a path, occasionally collecting chocolate and drafting laws that would affect the entire group.  Some of us were given a head start.

The group dynamic waffled from excitement to wavering enthusiasm, as we all waited for certain groups to effect laws that might benefit all of us, or only the "majority."  There were other blatant discrepancies in the rights of various group members.  See the die?  It only goes up to three.  Note that two of its sides are completely blacked out, meaning that a third of the time, certain players weren't allowed to advance at all.

The day has completely tired me out, so for now you'll have to come up with your own societal metaphor for what took place here.  More tomorrow...

Keep the balance,

ALN

Live from Be'er Sheva

Be'er Sheva is a large-ish city at the Northern edge of the Negev, home to a population of 200,000 from a wide variety of cultures, from Iraqi and Russian immigrants to Beduins who have lived here and the surrounding desert for generations.  Among its many landmarks are the Ben Gurion University, known for its scientific research, a large art museum, and several additional educational sites, spread out over the city's approximately 23,00 acres.

I am here along with some of my colleagues for a three-day in-service training ("hishtalmut") in multicultural studies at Beit Yatziv, the Education Ministry's center for continuing studies in the humanities.  Our program includes about 10 hours a day of lectures, discussions and workshops, with lots of food in between.

Oops, time to get back to class.  More later.... stay posted.

Keep the balance,

ALN

A Visibly Beautiful Family

When beginning this blog, I didn't know what direction it would take.  After a decade of hospital work there were so many stories to tell, an endless backlog of small, moving moments. It was hard to start with anything, for fear of missing out something, or perhaps, for fear of being overwhelmed.

I'm really not into the maudlin.  Honest.  I'm not trying to make anyone cry, and I learned awhile back that Survivor's Guilt, in its various guises, has nothing positive to offer.  But now that it has a venue, the here-and-now campaigns urgently to reveal itself.

Here is today's story.

M lies in her mother's lap, her eyes nodding, sometimes rolling, upward and back, trying in vain to focus ahead of her.  Her limbs are heavy, flopped down beside her flaccid body.  She loves attention but cannot maintain eye contact, cannot lift her arms out to reach another. She does not talk, can barely form a smile.  A rare genetic illness has robbed her nervous system of control over her body, and her muscles have atrophied.  She is nearly five years old.

I enter the outpatient waiting room.  M's mother catches sight of me and we share a moment, both our faces lit up in mutual recognition.  How nice to see you, I begin.  It's been so long.

Actually, it hasn't.  She gives a sad smile.  This month we've been here every Sunday. Nobody sees us.  We're the invisible family.  M is the invisible girl.

I'm stunned.  I try to think back...  How could I have missed them all this time?  I make a quick calculation.  Last Sunday I didn't come in to the department.  The week before that? Too long ago to remember.    I'm sorry I missed you before, I tell her.  There's not much else to say.  Lame excuses certainly won't do here. 

It's no use.  Murphy's Law has demanded that I be called away at that moment on urgent staff business. I excuse myself, privately committing to return and sit with this "invisible" family before the day is through.

Sometime later -- but not much later -- I make my way back to Outpatient.  It's a Sunday, and the department is overflowing with hematology patients.  Before I can be pulled aside by a familiar kid requesting a puzzle, or a concerned mother inquiring after her daughter's studies, I beeline it for a smallish patient room at the end of the hall.

So, how are you these days? I ask M's mother, as I reach out to take her hand.  She is doing all right, she tells me.  Her life is taking care of M.  That's all she does, all she wants to do.  I listen, and the questions takes form inside... I hesitate, but something inside pushes a question out. What happens when you need a break? Who relieves you?  She smiles.

My sister, if I need to go somewhere for a few hours.  Or if M can't fall asleep at night, I wake my sister at 2 a.m. and she takes over so I can sleep a little.  But that's it.  That's all I need.  No one else knows how to take care of M like I do.  

I don't need a vacation.  Seeing her smile at me, knowing that she's comfortable and free of pain, that's my vacation.  The only one I need, for as long as she needs me.

M's mother continues.  She has four daughters -- the oldest is in medical school, the second youngest still in high school.  I am a mother of girls, she tells me.  I love being a mother of girls.  Once, there was a son.  He left them seven years ago, at age four.

G-d gave him to us, and then He took him back.  We pray for him, and he is Up There, praying for us, all the time.  We celebrate his birthday, every year. We pray and we have a cake.  I am very proud, that we had him, and that we could give him back.   I know he takes care of us from Up There.

M's mother relates all of this clearly in a sincere expression of love and understanding, devoid of irony or sorrow. Her life is full of meaning, as her son's death continues to be.  

I listen.   I am awed and bewildered by her clarity of purpose.  

And then, at that moment, life goes on.  Two women come into the room to say hello, and a mother's conversation ensues.  A joke about M's diaper peeking out from over her pink jumpsuit flows into an earnest discussion of the deplorable popularity of low-rise jeans that do little to cover one's undergarments.  No one is embarrassed these days, they lament. What is the young generation coming to?

I excuse myself to go on with my workday, and, eventually, M returns home, still in her mother's arms.

Keep the balance,

ALN