Managing

We have created a paradigm of existence in which we manage more often than we fully live.

Most of us strive for financial success in order to someday buy the freedom to fully live: to pursue our passions and interests; to invest more time with the people we love; to finally travel, play, or simply be quiet . . . or maybe binge-watch Netflix.

But it seems to me that among the myriad people I’ve encountered, only the tiniest handful feel they have gained this freedom to follow their hearts – freedom to prioritize living ahead of striving. Few of us manage enter a space where we feel able to pursue our hearts’ callings rather than to act from the limitations of our circumstances or in service to our more mundane commitments.

I have a couple of friends who are “people of means” and who are each wonderfully dedicated to worthwhile projects and causes; they practice gratitude, philanthropy, and selective dedication to the things they love – they live quite fully and purposefully because they can truly afford to do so. In this liberal conclave of Carrboro, NC (quirky, sustainable, organically grown suburb of Chapel Hill, NC), I see (and rather envy) educated and committed members of the next generation making very deliberate choices about following their higher ideals in the way they live. But it’s not cheap to live here. Most of these folks have enjoyed opportunities that have given them the ability to make these enviable choices. For example, I know many people who’d love to shop more local, organic, and sustainable markets, but they simply cannot afford to. I myself have been wanting a Prius for five years, but alas and alack, I’m still driving a 2000 Jeep.

Almost exclusively, even among many folks in the upper middle class, I see people striving for more and more – and only just managing their lives.

Now, I have often lamented the loss of Thomas Jefferson to Alexander Hamilton (because I am a sentimental dork) and have pined for the loss of Jefferson’s vision of America as a nation of citizen farmers. This thinking is utterly silly, but it brings me back to a central fact that most of us feel unable (and some are genuinely unable) to escape financial limitations and demands.

With time as the true substance of our lives, I rather hate that we are compelled to earn first, and content ourselves – or force ourselves – to live in the remainder.

As individuals, municipalities, and a nation, we repeatedly face challenges and questions that demand we prioritize either our economic interests or our ideals. And our lives are largely defined by how we manage this tension.

This might, in fact, have been what the Jesus of Nazareth in the Gospel of Matthew was talking about in that spiel about one’s inability to serve two masters.

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Since my wonderful trip to DC, Writing Wrongs, my life has been all too much about merely managing – and I have not been able to direct all the time I had hoped into all the pursuits I care about. I have let circumstance bounce me along: responding to my kids’ needs in the moment, putting out fires, meeting deadlines, capitalizing on opportunities to travel, etc.

Of course, this makes my life with ALS more analogous to everyone else’s life rather than distinguished from it. Since my March diagnosis, managing this “busy” has been a wonderful anesthetic and diversion – especially the “good busy” of the trip and of seeing family and friends, and of working on education advocacy.  Opportunities have led to more opportunities.

But I haven’t managed to blog regularly, so here is a conglomeration of some things big and small, of the heavy and the humorous that I offer up to all of you friends, loved ones, and strangers alike who have elected to join me on this strange and unlikely journey.

Some of the things, if you will, that I have managed, so far.

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A Summer of Adventures

What a privilege to have newly encountered and rediscovered so many people whom I truly, deeply love. That ALS has brought these opportunities is the brightest of silver linings, and requires me to include this advice in this post:

Being unable to prioritize work – having to accept ALS as a finite limit to my ambitions re: influencing society or growing my career – has freed me to live. While I am unable to indulge my passions quite as fully as a “person of means,” I have been and will continue to be able to do many things through the support of friends and family. I may not get to fly to a different country each month or host huge fantasy fundraisers for Mayday PAC, Public Campaign, Public Justice, or the SYTA Youth Foundation, but my illness is, in a way, a rare “free pass” to seek out the people and things I love.

It’s hard to get used to, but I am underway.

Here are a few highlights of the summer as I look to the final chapters of my life:

  • My family enjoyed a week at Sunset Beach, including a Cat 2 hurricane:

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photographing Poe’s [purported] Goldbug Tree

I was then able to house-sit with my best friend on the Isle of Palms and to dine at our favorite places, Poe’s TaverIMG_0405n on Sullivan’s Island and SALT at Station 22. When Deirdre and I came here in August of 2013 for my post-bar exam trip, I was healthy – almost. It was on this trip that she told me I was favoring my left leg and then discovered I had whole-leg weakness. IMG_0390

We were excellent participators.

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Dinner with Rowan and Hadley at SALT.

[This was the last time I would ever walk unfettered on a beach. A treasured memory.]

The highlights this year were the Black Fedora Mystery Theater and taking my daughter and hers to eat on the terrace at SALT.

Any summer with SALT’s crab beignets on the upper terrace is a good summer!

This was (I am a bit upset to say) my last summer in the ocean – my husband & my best friend (a physical therapist) had to help me in & out of the surf – but I was able to cherish the sensation of being in the ocean a final time & to “say goodbye,” if you will.

I am forever grateful to the friends who made these vacations possible.

  • I was able to witness and participate in the ALS Ice Bucket Challenge. What an insane and momentous fundraising phenomenon: an amazing story of love and fighting spirit that blossomed exponentially into the greatest crowd-sourcing campaign in human history. Second to the Arab Spring, it might also be the world’s finest ever use of social media. My husband, children, and I all made videos, and the response from those we challenged – and from many more – was tear-worthy. Our school system here and here, our family, here, here, and here, and friends beyond my time to link – but a couple of notables here, here, and here (most original to WCHL news and sports director Ran Northam’s wife, Randi!) – all rallied to the cause. Award for farthest away but closest to our hearts goes to the Cordeiro family in Brazil. What a crazy burst of love and support it was for my little “orphan disease” and for me. Over $115 million thus far.

I pray that it fulfills its promise and results in genuine progress: a treatment &/or cure, for future sufferers, if not for me. ALS is a shitty way to die; no one wants this for his/her family.

So thanks to everyone who took this challenge, and especially to those who invoked me or my family in their monetary or video contributions to the cause. You all inspire me to hope infinitely, even as I practice acceptance.

You can see my walker in the back . . . so I am still walking. Slow as Friday, but walking!

  • (Here follows an inartful, digression, but it seems merited; the management appreciates your indulgence.) Here is a charming overview of Speaker Tillis’s remarks re: educators. It was a privilege to recite the NEA script in a $1.7 million ad buy, even though I’d always prefer a more nuanced and extensive dialogue on these issues. As a pro-public-education activist, I am quite familiar with the details of the state budget, here and here; as an attorney, I am quite familiar with the constitutional and contract law violations/implications of many recent NCGA policies; and as a career and current educator, I bear witness to the harmful impact of these policies on schools and students. So while the commercial I shot offers what I have to call “30-second political-rhetoric truth,” I stand by it whole-heartedly. Of course, if we’d pass the constitutional amendment to overturn Citizens United and provided more effective education – especially practical modules promoting civic engagement – then perhaps we’d have a better-informed citizenry, higher-quality public debate, and fewer voters making decisions based on 30-second ads – ads which cannot begin to convey the salient details or material implications of the issues facing our states and nation. But I suppose our desperate need as a democracy to get money our of politics and assure every voice and vote have equal influence is a subject for another post. So here:

  • I attended the Student and Youth Travel Association 2014 Conference (hereinafter known as “A Trifecta of Wonderment”).  (1) Eric Marshall, an executive with Universal Orlando and our dear friend since the 1996 Olympics, helped me execute Writing Wrongs in May. After this post about the trip was published, it hit the radar of the student travel industry, which, let me be crystal clear, is populated by some of the most selfless and delightful folks in our midst. They then asked me to join them at their (2) fantastic conference in Toronto:

(CN Tower,

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  •  Aquarium,

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I was to answer some questions and perhaps speak about the D.C. trip fundraising and about the value of travel for students. They did not tell me that I would be honored as a “Youth First” award recipient at their SYTA Youth Foundation luncheon or that my beloved friend of two decades would be introducing me. (Smart move, guys.)

photo(53)-1Here is the video of my remarks (Eric’s generous introduction begins at 42:30). It was pure privilege to meet and interact with this passionate group of travel industry folks who are, at their core, top-notch philanthropists and educators. I have not completely defined what I want my foundation to be or to do, but it will involve the SYTA Youth Foundation. If you have ever been enriched by travel opportunities and believe that economically disadvantaged students should also have access to such experiences, please consider a donation to the SYTA Youth Foundation. They gave over $100,000 in “Roads Scholarships” last year so that deserving kids would not miss their school trips. They provide a “Silver Linings” trip for one school each year to travel beyond their geographical and cultural limits. Additionally, they are getting closer to fully funding their endowment. I have a vision of working with them to make Writing Wrongs an annual event. Whatever time I get to work with these new friends will be a wonderful, even if small, infinity. Thanks to all the SYTA Youth Foundation Board for this honor.

  • NEALS: I have been invited to become an ALS ambassador/advocate and will attend training at the Sandpearl Resort in Clearwater Beach in late October. There will be post-conference decadence followed by a bucket list item: swimming with the manatees in Crystal River, something I might otherwise never have done.
  • I planned – and am still planning – 10 days in Japan with my children over Thanksgiving. The trip is a stunning gift from a dear friend who knows that after I lived Japan for almost three years and had my life forever transformed by the experience, I have never been able to afford a subsequent visit. The required planning is extensive – disability access in Japan is woefully inadequate – and I do not love rushed “tourist” travel; however, the excitement on my children’s faces and the prospect of visiting Studio Ghibli‘s museum, sharing the wonders of Kyoto, and touring Hiroshima/Miyajima with them make it profoundly exciting and joyful work.

Managing My Health

As promised, here is the story of my progressive and inevitable physical decline. It’s happening, though I refuse to give it too much bandwidth.

My late July quarterly showed less-than-anticipated losses of breathing capacity and mobility; however, Late August and September have been very rough. I am genuinely unsteady. Also, my torso muscles are fading which makes standing/walking and even (especially) sitting straight for extended periods rather exhausting.

At the risk of becoming that old person in the family who talks incessantly of his or her many ailments, I’ll add that I am reeling from an ear procedure I had in order to guarantee that I’ll be vertigo free when I take my kids on the big trip to Japan in November. Injections knocked out the vestibular function (balance portion) of my left year, as intended; however, they unfortunately damaged my hearing (as they do 3 of 10 patients – I should probably stop playing medical odds, right?) – and I have yet to regain my equilibrium. So that’s been awesome. After 2 weeks of terrible nausea, I am up and improving, but it may take 4-6 weeks, which is, in the life of an ALS patient, a very long time to “miss.”

I am trying to make the proverbial best of a darkly comic situation. Think Lucille Austero in Arrested Development . . . plus ALS.

My diagnosis and life with ALS thus remains a strange blend of blessing and curse.

It’s hard to accept the weakening and the ever-growing list of things I cannot do. I was walking 4-5 miles per day, 4-6 days per week summer of 2013, before my fall 2013 ALS onset and March 2014 diagnosis.

It’s strange now to even imagine just getting up and walking normally at all. But I imagine it all the time. One more long walk around Chapel Hill in this exquisite waning summer and autumn onset during which I could truly savor the privilege of walking. One more walk with my friend, my child, my parents. Even just a few minutes to dance without inhibition to one more favorite song.

I often dream of running or dancing – buried wishes making themselves manifest, I suppose. As my walking becomes very labored and precarious and as I face the end of my independence – a bitter, bitter pill – I want to be grateful for my remaining ability to write, type, swallow and speak but the truth is, I’d give anything to win back my mobility for even a day.

But I can’t. So I manage.

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Managing Limits and Accepting Realities

Bigger news is that I tried to teach another year! I hoped to make it at least one semester. But as Donna Moss say at the 12:55 mark of The West Wing, 20 Hours in America, Part II, “That was a pipe dream; that was folly.”

I gave it a rather spectacular go: binders and supplies for each class, color coded and tabbed (a law school neurosis, run amok); a full American Literature SIOP course outlined and prepped; and, of course . . . a mobility scooter.

Yes, I have become a scooter person.

I really loved the idea of spending another semester or, if my progression slowed, another year with these great kids. I am most at home in a high school classroom, still.

Thus I have made the watershed decision to go on disability. It feels like a little bereavement – the death of a significant part of my identity – but it is time.

  • Time to be finished with much of my tangential and vocational “work” – finished with that striving.
  • Time to pare away the many pursuits which, while they are worthwhile, I will not be able to serve. (I’ve never been one to pare away much, I am afraid. It feels a bit like failing: failing to help all the people I’d like to; failure to be as involved as I’d like with my kids’ schools; failure to suck the proverbial marrow. Truthfully, though, it’s time to get super-selective about which bones I chew. And time, I suggest to you, dear readers, that you acknowledge that we might all benefit from more careful consideration of where we dedicate our time and energies. You are each following me in this strange dance toward death, you know, and most of you will not have months or years to complete your bucket list and to dedicate special time to those you most love. Or reconnect with loved ones lost to time. Just ‘sayin.)
  • Time to write all the goodbye letters and messages that seemed like projects for the future; that future is – I can deny it no longer – upon me. It is today.
  • Time to build the home that will be my physical legacy to my children.
  • Time to book the travel to strike the final few items off the bucket list. And then buy a conversion van rather than the convertible VW of my material dreams!
  • Time to be more selfish than I ever wanted to be – or to become untenably sad and die with too many regrets. It’s time even to wallow occasionally in the sadness of my losses. Folks will, I think, understand.

In essence, it’s time to start letting go of the usual “busy.” Of the usual, itself. It is time for the unusual – for boldness, unprecedented honesty, affordable extravagance, and an uncharacteristic pulling back from the earning and striving.

It feels imperative that I execute these changes so that I can indulge in the people, places, and positions that are my life’s siren voices: writing, music, reading, advocacy for the ideals I hold most dear, and most centrally, the people I love.

Rocks and dangers, judgments and stigmas, are rendered irrelevant by my disease: fear of consequences no longer a distracts from the things which claim my interest and my heart. ALS has, at least, thusly eliminated cowardice from my decision-making calculus: I find myself thinking, “What is ‘X’ going to do, kill me?”

Hearkening back to Plato’s Aristotle, I recall the quote that I will likely choose to grace my memorial: “The challenge in life is not to out run death . . . but to outrun unrighteousness [whatever, I suppose, I perceive that to be], for that runs far faster than death.”

Since I’m going to end up paralyzed and then die, I’d like to die in full stride.

To the extent I can manage.

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The Call to More than Manage

I know someone who lost a child. Her firstborn died suddenly at age 17 months. And though she enjoys the enviable privilege of being married to a beloved soul-mate and now has two beautiful, growing children, a son and a daughter, I am haunted by her words of long ago.

When I was debating 2L summer job offers at large firms, I spoke with her about her time at a Big Law firm, where she worked for the first year or so of her firstborn’s life. She was able to do amazing pro-bono work at her firm with fabulous people who respected her public-interest heart, but she said that she regretted every moment she spent there, away from her child. She and her husband have since returned to the Chapel Hill area to slow down their lives and raise their younger children. And between her second and third pregnancies, she faced and “beat” Hodgkins. Now, she has resigned a sweet teaching position in order to write – to follow her siren’s call.

Why do I tell you her story?

Because for any thoughtful person, tragedy hones living with painful incisions. It does some violent paring.

That pain infuses one’s remaining time with determination to live better – more true to one’s ideals or calling. And the sufferer desperately hopes that this new wisdom will inure to the benefit of the people and things he or she loves – that because of the loss, his or her life will radiate a greater goodness.

In some ways, this can be unhelpful – can feel like a burden to be inspirational or to feign strength or happiness. In this vein, let me assure you that I have my moments of sadness when emotion sort of washes over me and envelopes me like a giant wave. It carries me for a time helplessly buoyant with tears and grief. And then it deposits me back into the moment. It’s cathartic and honest suffering – I am not superhuman.

But I am logical. Perhaps this more than anything is three long years of law school paying a practical dividend, though it cannot yield the the career I planned.

I love the Yiddish proverb: Man plans and God laughs.

I must recognize that anger is a wasted opportunity to experience remaining joy, excessive wallowing is a wasted opportunity to write another letter or email while I can still type, and time pining at home is a wasted opportunity to drive to somewhere beautiful or interesting while I can still drive. Some of what you dear folks have called strength is, I fear, merely pragmatism.

Obviously, I also want to rob this fate of some of its power over me – to transform it as much as possible to a good. To a positive legacy. To accomplishing beneficial goals that a healthy me, all too busy with striving in a second career, could never have accomplished.

Of course to have back her first-born, my friend would doubtlessly trade all of the wisdom gained. Certainly, to see my children grow into adults, I would trade all the opportunities and attention that ALS has brought my way.

But my friend’s daughter will not return to this life, and I will almost certainly die of ALS before my children finish college – probably before they finish high school.

The options of our past are waves broken and pulled back into the sea. They are forever lost. Yet new waves form and break. I ride them and I find great joy and blessing in the unexpected places I land. And God laughs.

We claim and nurture the lessons of our losses and the opportunities of our present. We share words and stories and navigate our way – the bravest and best way we can. We cultivate whatever good things our tragedies bring in order to honor all that we have lost. To an extent, it is our responsibility. Beyond that, we cry when we have to and practice radical acceptance of what we cannot change in order to experience the things we can.

We manage.

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ALS has given me a cosmic directive that I will encourage you to consider before your tragedy strikes, before your loss occurs, or merely before you spend the currency of your life – your time – predominantly on things foisted upon you rather than the things of your own choosing.

For me, it is an imposed mandate:

  • to cull away tangential demands of this world and to focus upon and nurture the heart-loves of our lives – the people and the ideals that we most treasure. Those which we would choose above all else, and, in my case, that I must choose now.
  • to refuse to be swept along, pulled aside, or otherwise diverted from the essential matters of this life.
  • to do more than merely manage.

This directive is, in itself, a fearfully heavy call. It asks me to be hyperaware and counterintuitive. But I find – as I found when I left teaching for law school and as other people who make radical course changes report – that new and rewarding places await us when we break from the patterns fossilized by expectation and habit. We do not fall off the edges of our prescribed lives; in fact, many of the boundaries we perceive turn out to be confinements designed to mollify us and to limit our lives. I urge you to test these borders.

As I let go of my pre-ALS life, I fall back into contact with students and friends I most love and discover/rediscover friends who remind me who I am. Life remains precious, but love and loss are preternaturally amplified. While I remain passionate about projects and issues, I find myself more passionate and sentimental about people, about places, about music, about holding and being held by my loved ones.

I’ll take my children to Japan in November – a fond farewell to a place that did so much to get me outside my limiting bubbles of culture, language, and thought. Then I’ll look to the next thing. MLK weekend we’ll see the new part of Harry Potter world and the whole family will swim with the manatees. I’ll visit friends whenever and wherever possible for as long as I can travel independently. And spring break will see another trip – to wherever and whatever extent I can still manage.

And I’ll write finALS: my closing arguments. Try to leave nothing, I hope, unsaid.

The goal now is to manage to have the experiences, to create the memories, and to leave the impressions of my fondest dreams – to live fully in my remaining days.

Somewhat sad yet precious days for which I am, more than ever, managing to be deeply grateful.

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A Retrospective of Writing Wrongs 2014: Our Three-Day Adventure in Washington, D.C.

In his Alice books, Lewis Carroll invites us all, even as children, to question the absoluteness of size. Myself, I’ve studied no particle physics, string theory, or relativity, but I’d wager that each of us who has (1) modeled both an atom and the solar system in a science class, (2) read Madeleine L’Engle (or had really any brush with science fiction), or merely (3) seen Men in Black, is somehow aware of the paradox and relativity of size:

Though we are each infinitesimally small in the known universe, we are each in ourselves a vast universe of thought and matter.

The medal given to the Righteous Among the Nations at Yad Vashem (Holocaust Memorial / Jerusalem) says, “Whosoever saves a single life, saves an entire universe” (Mishnah, Sanhedrin 4:5). This message echoes here in the Qur’an.

So how does one (if one were, say, terminally ill) measure a single life? We are each proportionally insignificant, yet simultaneously vast.

And we are, increasingly, a species preoccupied by measure, comparison, and competition, though we know not the true measure – especially in the sense that measure means value – of anything. All but the most empirical assessments (time, temperature, L x W x D) are relative, both contingent upon our personal values and limited, just as we each are: bound by time and place and experience.

I am sometimes stunned by how uncertain is our knowledge and how incomplete is our comprehension of the meaning and reach of our behaviors. Though each choice occurs as a single point in time, each is paradoxically infinite in its potential ramification.

This paradox exists in the mundane as well as the profound: winning high office may ultimately accomplish less than bringing water to someone thirsting or aid to someone in need. The machinations of powerful people and entities may immediately impact but subsequently fade: the work of a preeminent lawyer’s lifetime might be undone by one case overturned or the tenure of a powerful politician’s career ended by a handful of votes. Yet the love of an obscure father for his child or a small kindness from a stranger may have far-reaching impact that is never recognized or attributed.

I long ago made peace with these paradoxes. I accepted my place as a duly limited person living a relatively short time on a tiny rock in space. But I never believed this made me small. I became inexplicably assured that I matter. And that you matter. That we are each beyond measure and that society’s attempt to value people and our temporal accomplishments via wealth and fame and standardized tests is at its best, illusory, and at its worst, ludicrous.

I agree with Jim Carrey on this premise regarding the inability of worldly gain to bring fulfillment; however, I also have faith that our most trivial acts and choices can be far-reaching and that our most commonplace choices can be more powerful and important than we will ever know.

During my two decades of teaching, I was accused of lacking personal ambition. On the contrary: I had a different kind of ambition – ambition based on my own concepts of power, influence, and success.

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I always used Dead Poets Society when teaching American Lit., not only to illustrate the messages of the Transcendentalists, but also to address the human need (emergent in virtually all my teenage students) to navigate a meaningful life. It remained a favorite for two decades. Today, I remember the Whitman poem Oh Me! Oh Life! so well-utilized in the film.

The speaker faces the basic human quest for significance, posing the question as,

“O me! so sad, recurring—What good amid these, O me, O life?”

and answering with the prescription,

“…you are here—that life exists and identity,
That the powerful play goes on, and you may contribute a verse.

When I was first diagnosed with ALS, I focused on how my verse was being truncated – how I would never have my second career in law and policy.  But this opportunity to fundraise for and to execute this trip reminded me of all I might still accomplish to extend my contribution – help me focus on what I can do.

The experience was stunningly powerful, from the grandeur of the monuments to the power of the museums, to the wonderful food, accommodations, and poetry. It all coalesced in almost miraculous ways. For example, the current National Archivist formerly oversaw the Duke libraries and discovered our story in the Durham Herald-Sun. A Sacrificial Poet who works with our poetry club connected us with a Graffiti DC champion poet whose father owns a Durham, NC restaurant where some of the students had eaten. Serendipity reigned. Disparate donors, supporters, hosts, and participants meshed in ways I could not have envisioned, and seeing the confluence was wonderfully affirming. The lessons, the laughter, and the relationships of this experience transcend both me and my illness; they will outlive me. It turned out, thankfully, to be not really about me at all, and that was my goal – to name inequities, to elevate tolerance, and to empower these students.

I give deepest thanks to all who helped. How comforting to be deteriorating with ALS yet feel this lucky. I always told God that I would make a lousy Job; I feel like he’s winking at me – making dying young not only palatable, but strangely lovely. Like the religious ideas of strength in weakness and wisdom in foolishness, the paradox of living while dying embodies a strange and palliative beauty.

A travelogue and photos follow, but here and here are media pieces containing testimonies from students; they scratch the surface of how meaningful this opportunity was. The Karen students’ reflections about how they connect the horrors of the Holocaust to the horrors that their ethnic group endured in Burma was perhaps the most sobering and humbling response. Another undocumented student tearfully shared the humiliating treatment that she and her brother-in-law endured during a traffic stop. Several students have worn their jewelry – dogtags, stars of David, and bracelets – from the moment we left the museum shop through their graduation. And overheard at Arlington National Cemetery, a student who had never been out of the Triangle area said to her peers in awe, “Y’all look! All these people died for us.”

Yes, though it was a whirlwind of logistics and activity, I have no doubt that this trip drastically expanded the verse of my life – that the memories and lessons from this trip will enrich and empower the participants beyond measure.

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Writing Wrongs 2014: A Travelogue:

On May 29th, I left Phoenix Academy DSCF3619High School for Washington, D.C. with 26 students and 15 staff.

Most of the students had never visited D.C. – and none of us had visited like this. Certainly no group has ever experienced a richer 45 hours in our nation’s capital.

Students and staff are now composing, revising, and submitting for publication their written reflections. To all who contributed to Writing Wrongs 2014, a wholly donor-funded trip, I hope you will glean from what follows a sense that you contributed to something worthwhile and powerful.

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The students could not envision what awaited them; it is hard to reduce it to words.

 

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Thursday afternoon, May 29th, our group visited the World War II, Lincoln, Korean War, MLK, and FDR memorials. Despite the rain, we made the tour in excellent time and in reasonably high spirits.  We each saw something new, even I who lived in D.C. my 2L summer of law school.

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Visiting Mr. Lincoln, one of my favorite places.

My Karen students were amazed by the size and grandeur. They also wanted to know why everything was white.

My Karen students were amazed by the size and grandeur. They also wanted to know why everything was white. It’s hard to discuss classical architecture with ESL students, but thanks to translator Mr. Eh Ta Pwee, they now understand why their adopted nation’s powerful capital city is (by their standards) rather colorless.

 

We were wet and chilly, but happy. The kids were absolutely wonderful sports.

We were wet and chilly, but happy. The students were absolutely wonderful sports.

The Korean War Memorial seemed somehow more somber and realistic in the rain. The haunting likenesses of U.S. soldiers of different races fighting side by side was moving and beautiful; a wonderful message about brotherhood and unity.

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Students were content to walk slowly and stand quietly, and many asked questions.

 

Similarly, the MLK Memorial seemed more weighty and powerful in the overcast weather. The Mountains of Injustice and the Stone of Hope stood unmoved by the rivulets of water on their facades.

DSCF3630 DSCF3628I was able to read each of the 14 quotations on the Inscription Wall and explain each to one of my ESL students. After I discussed the third or fourth quotation, one of my African-American students who had been walking along silently with us asked incredulously as he looked at the huge inscriptions, “Ms. Connell, Did MLK say all these?” It was wonderful to tell him yes, and to speak of Dr. King’s leadership in matters beyond racial inequity and of his statesmanship in contexts beyond his “I Have a Dream” speech.

It was my first time visiting the MLK and FDR memorials, and it seemed fitting: this was my first time using a wheelchair.

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It was particularly nice to visit the beautiful and intensely humane FDR memorial. I used a wheelchair so that I would not slow down the group. I felt in good company here.

 

Thursday night, we dined at the 14th & V location of Busboys and Poets where my students saw a mural full of people who looked like them:

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We enjoyed the spoken-word poetry of some of our nation’s finest poetry performers, George “G” Yamazawa  (“unforgettable” on the power of identity and ethnic pride), Elizabeth Acevedo (on resisting assimilation and taking pride in one’s heritage . . . and one’s “Hair“) and Rudy Francisco (on personal courage and avoiding regret). Students and staff alike were smitten. After their powerful messages about identity, race, and tolerance, we could have gone home satisfied . . . forever enriched.

The students got to talk and take photos with the stars of the night who, once again, looked like them – shared experiences with them – and were at the center. Here is our goofy shot (I took the “goofy” part to heart more than most) after the performance:

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After a great performance: the students, the poets, and me.

Friday morning, we were special guests of National Archivist David Ferriero for private viewings of the Nuremberg Laws, a Nazi art “look book,” the founding documents in the famous rotunda of the National Archives, and, in the David M. Rubenstein Gallery’s Records of Rights, a 1297 copy of the Magna Carta. As we entered and exited the special event entrance, we crossed a floor medallion embossed with the phrase “Littera Scripta Manet”: loosely translated, “The written word endures.” Apropos for a venture designed to inspire written expression.

Photographs below courtesy of The National Archives/Jeff Reed, photographer

David Ferriero, the 10th National Archivist, welcomes us and explains how the Archives came to possess the original Nuremburg Laws and albums of art looted by the Nazis.

David Ferriero, the 10th National Archivist, welcomes us and explains how the Archives came to possess the original Nuremberg Laws and albums of art looted by the Nazis. (Photo courtesy of Jeff Reed/National Archives)

 

Vivian Connell School Group

Students view an actual Nazi look book from which Hitler, Goering, and other top officials could choose stolen art. These appeared in the documentary The Monuments Men. (Photo courtesy of Jeff Reed/National Archives)

Vivian Connell School Group

Chapel Hill High School history teacher Lauren Logan shows students Adolph Hitler’s signature on the Nuremberg Laws – the first codification of Germany’s discrimination and disenfranchisement of their Jewry. (Photo courtesy of Jeff Reed/National Archives)

Vivian Connell School Group

These Karen students from Burma (Myanmar), all born in Thai refugee camps and who have lived in the U.S. less than two years, wanted to know where, on a map of the original thirteen colonies, they could find Washington and Chapel Hill! (Photo courtesy of Jeff Reed/National Archives)

Vivian Connell School Group

In the rotunda, we enjoyed a private viewing of the Declaration, the Constitution and the Bill of Rights. Here, a guide points out details in the murals of the founding fathers. (Photo courtesy of Jeff Reed/National Archives)

Vivian Connell School Group

Martin Castro, here pointing out various signatures, is a recent graduate and history buff who wants to become an archivist. To visit the USHMM And National Archives has been a dream of his since he was nine. I knew nothing of this when I asked for support for this trip. (Photo courtesy of Jeff Reed/National Archives)

Vivian Connell School Group

Because Mr. Ferriero and his staff welcomed us before opening to the public, we enjoyed the rare luxury of viewing these documents at our leisure, without waiting in the line which stretched around the block as we left. It was particularly satisfying to see our kids look at the line and realize that they had been treated as VIPs. (Photo courtesy of Jeff Reed/National Archives)

Vivian Connell School Group

Caleb Penny, a student who earlier heard the guide’s explanations, shares with his peers the identities of various founders in the mural. (Photo courtesy of Jeff Reed/National Archives)

Vivian Connell School Group

Photo courtesy of Jeff Reed/National Archives

Vivian Connell School Group

One of my favorite moments was watching our history teachers, Lauren Logan (hand to mouth) and Clyde McPherson (reading the information above the case) view the 1297 copy of the Magna Carta. The document, over 700 years old, is written in tiny, gorgeous Latin script. We viewed this artifact along with other landmarks in the progress of human rights, in the David M. Rubenstein Gallery. Mr. Rubenstein, a renowned philanthropist, purchased & donated this rare document to keep a copy of the Magna Carta in the US. (Photo courtesy of Jeff Reed/National Archives)

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Following our visit to the National Archives, from 10:00 A.M. to 4:00 P.M. we were treated to what may be the most generous and solicitous treatment ever given a tour group at the U.S. Holocaust Memorial Museum. The museum was, as ever, a place of power and truth that transcends words or lessons.

One of the many kindnesses they showed our group was providing in-house photography of our visit. The following shots inside the museum are courtesy of the USHMM:

30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests

A student’s composes his reaction to the USHMM’s permanent exhibit.

30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests

Participants journaled as they made their way through the museum. (Photo courtesy of USHMM/Miriam Lomaskin)

30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests

Photo courtesy of USHMM/Miriam Lomaskin

30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests

One of the museum’s impeccably trained guides explains part of the exhibit to History teacher Clyde McPherson, Jahdean Simon, administrator Stephon Goode, Adarius Byrd-Kelly, and Julio Guevara.

30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests

Group guide and Brandhom Rodriguez (L) and Martin Castro (R) flank science teacher Ally Adcock. Ms. Adcock’s four children are half Jewish, and she was moved by what might have happened to them. (Photo courtesy of USHMM/Miriam Lomaskin)

After a tour led by docent guides, an honor in itself, we enjoyed a debriefing that included the responsibility exercise. We then explored items of interest & visited the museum shop. After a catered lunch, we were shown artifacts by a conservator & treated to a talk about how artifacts are shared, preserved, & displayed. This behind-the-scenes experience was intriguing. Did you know that artifacts on loan from European facilities must return every five years? That the newly installed barracks from Auschwitz brought insects that threatened all the wood and paper in the museum and had to be treated by isolating them and raising their temperature to 120 degrees for six hours? That there are specialized conservators for different materials? That you can wash a document?

Amazing.

30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests

30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests

In my favorite exhibit, the Tower of Faces, a collection of photographs of the former Jewish residents of  Eishishok, one shtetl (Jewish town in Eastern Europe) – one of hundreds eradicated by the Nazis. One of my favorite former students, Katelyn Claessen pushed me through the exhibit so that all the participants could engage with the content. Even in a wheelchair, I am the most fortunate person in this image. (Photo courtesy of USHMM/Miriam Lomaskin)

 

30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests

Jermishia Baldwin, Kirsten Simmons (L), Martin Castro, and Silvestre Luna (R) take in the men, women, and children killed by Nazis simply because they were Jewish.

30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests 30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests 30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests

 

 

 

 

 

 

 

30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests(L) I explained to Min Thu and Eh Kaw Mu, two refugees from Burma, the responsibility of each generation to keep memory alive. (Below L) Eve Vongchucherd explains an exhibit to Day Nyar Wah, a Karen refugee who identified with the Jews. (Below R) Savannah Cox studies the faces of Eishishok in the Tower of Faces.

(Photos courtesy of the USHMM/Miriam Lomaskin)

30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests

Student Caleb Penny and others express their thoughts about which people in the Third Reich were responsible for the Holocaust. (Photo courtesy of USHMM/Miriam Lomaskin)

 

30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests

Students each chose a stone expressing commitments to peace and to remembrance. (Photo courtesy of USHMM/Miriam Lomaskin)

30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests

Claudia Saavedra-Gonzalez decides how to spend her museum gift shop allotment.

After lunch, we were taken through the current temporary exhibit, Some Were Neighbors, Collaboration and Complicity in the Holocaust, by excellent guides, including the 92-year-old powerhouse, Margit Miessner. The photographs, all taken by USHMM photographers in another stunning act of generosity, speak for themselves.

30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests

Margit Miessner speaks to students about the role of average Germans in tolerating, supporting, and even aiding the perpetration of genocide during the Holocaust. (Photo courtesy of USHMM/Miriam Lomaskin)

30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests

Margit Miessner delighted Spanish-speaking newcomer, Carlos Rodriguez by explaining ideas for him in his native language. (Photo courtesy of USHMM/Miriam Lomaskin)

30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests

Margit Miessner, at age 92, encouraged her group to “keep up!” as she took them through the exhibit. Both the students and adults in her group considered her the highlight of their experience. (Photo courtesy of USHMM/Miriam Lomaskin)

Images from the afternoon:

30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests

Director of Youth Initiatives Dr. Jesse Nickelson welcomed us to the museum. He and his staff were gracious and professional from our virtual “pre-visit” via Adobe Connect to our farewell.

30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests 30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests 30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests 30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests 30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests 30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests 30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests 30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests 30 May 2014, Former Museum Belfer Teacher Fellow and current Phoenix Academy Teacher, Vivian Connell, diagnosed with ALS, brings her students to the Museum along with other Teachers and guests

(L) James Flemming & Warren Marcos lead students & staff in the Responsibility Exercise. We had a spirited & extended debate about whether a German worker in a Zyklon B factory, knowing the gas canisters were used to execute Jews, was minimally or significantly responsible for the Holocaust. There was no answer, only the question for us all: “What will you do?” When you see intolerance or discrimination, what will you do. Accept it? Contribute to it? Or confront and resist it?

(R) Closing remarks after a remarkable day.

 Photos courtesy of USHMM

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

(Above L) with Miriam Lomaskin, USHMM photographer who commemorated our visit with these beautiful images. (Above R) With James, Emily, and Jesse, hosts extraordinaire.

After the museum visit, we returned to the hospitable and accommodating (and quite hip) W Hotel (formerly The Washington) where our group visited the renowned POV lounge and terrace for photographs of the White House and the Washington Monument. We enjoyed dinner Friday night just a block away at The Old Ebbitt Grill where students and staff took photographs together and and even sang impromptu a cappella.

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In the POV Lounge.

 

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The lobby of the W.

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To view many more candids and videos of all participants, visit our Shutterfly.com share page.

 

 

 

 

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Saturday morning, we took photographs in front of the Ellipse of the White House, visited the hallowed ground of Arlington National Cemetery to view the Eternal Flame at President Kennedy’s grave site, and witnessed the changing of the guard at the Tomb of the Unknowns. Before leaving D.C. we even made a quick stop at the Marine Memorial depicting the raising of the flag at Iwo Jima. (Photos available here.)

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Our Official Portrait, photo courtesy of the USHMM.

Thank you to all who participated, publicized, promoted, donated, or encouraged.

I can tell you exactly how much we spent, how long we stayed, and the hours we kept. But the lessons, the kindnesses, the impact – they were all immeasurable.

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x

Opportunity, Part I

What are our lives but a series of opportunities? Chances taken, capitalized upon. Chances missed.

In the window since my last post, I have pondered this word. President Obama touted opportunity in the State of the Union. “Equal opportunity” is a slippery and widely debated ideal; does providing equal opportunity mean providing identical opportunity? What is the greater opportunity: the grander, more lucrative job? the blessing of greater margin and time in one’s life? the chance to love someone you admire and who makes your heart sing?

I’ll be blogging more about opportunities and their inextricable coexistence with difficult choices and with inequity.

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Today, I am (joyfully) overwhelmed with trip preparations; thanks to over $30K in donations, 15 adults will embark next week with 28 teenagers for our nation’s capital to enjoy rare access to powerful artifacts in hope of empowering largely voiceless youth to lead their communities in confronting and resisting intolerance.

On a less lofty note, I am busy aggregating nine menu selections for forty-three people.

But I feel compelled to post. I am overdue in thanking the many people who gave me yet another great gift in this life: a magical opportunity – the chance to take a meaningful and exciting trip like the one my Writing Wrongs students will experience May 29th-31st.

Today, I must eschew (at least to some extent) the abstract musings and share the joy of a recent tangible and singularly precious opportunity.

My Experience at the National Commemoration of the Days of Remembrance and the USHMM 2014 National Tribute Dinner 

Remember David After Dentist? (And yes, you should take this as a sign that this post will be less lyrical than the last.)

The poor kid in the video is recovering from dental surgery, seeing double, and is very concerned about why he feels “funny” (thus creating what we English teachers call dramatic irony: the adult viewer knows that David feels funny because David is high as a kite. David does not know this.).  David asks both whether the strangeness he is experiencing is “going to be forever” and, in very earnest confusion, “Is this real life?” I have found myself thinking strangely (embarrassingly?) often of David’s state of mind since my diagnosis went public and my story hit the media.

I was never completely comfortable with David’s video – oh I laughed. Hard. But I felt somewhat guilty for being so amused, and I wondered if I would have posted it if David were my poor, drugged-out child. David was clearly feeling a bit afraid, and he had no autonomy – no say in becoming an Internet sensation and a meme. (Posting that video publicly does not seem wholly right, and I believe the slide show at David’s wedding is going to bear me out on this.)

Like poor loopy David, I have recently experienced some spotlight time as a result of a situation over which I had no control: David got anesthesia; I got ALS.

Unlike poor loopy David, however, I did make the initial decision to go public online.

But the story can get away from you quickly. I had no idea where the choice would lead. Maybe David’s dad feels the same way.

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In case you are new . . .

A colleague sent my private Facebook post about my diagnosis of ALS to a nationally prominent blogger. My education and non-profit compatriots established a donation page for Writing Wrongs.  Then my school district did a press release; several journalists were touched by the story and wrote lovely supportive pieces; and I was able to raise in just over 2 weeks over $30K for a trip to D.C. with my at-risk and ESL students, centered around the US Holocaust Memorial Museum.

Then, thanks to a generous friend-of-the-museum bringing my story to their attention, the museum invited me to join them for the Days of Remembrance events. A proverbial “opportunity of a lifetime,” which I document below.

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Opportunities for Heroism

I did not mind the media coverage, as long as it advanced my message and helped provide our students a deluxe experience at the USHMM. But I became uncomfortable about references to me as a “hero.”

One of my favorite and most brilliant attorney friends (and genuine hero in public interest law) went to great pains to make me feel less embarrassed about and more deserving of the characterization. But I have to rule against him:

People who step in front of bullets are heroes. I just got shot.

As for “the way I am facing my death,” it is a result of faith and grace (as I perceive them). It’s not that I am struggling to repress or to cope with depression or panic; I genuinely do not feel any. At least not for myself. And as I have cataloged in previous posts, my life’s bounteous opportunities and experiences make my impending death much less scary, less unfair.

Of course, I’d like more time – more opportunity to spend time with my children and with those I most love – but I recognize my privilege and good fortune: they are glaring facts; I am not being insightful. I do not feel brave.

I did mindfully tell my story when given an opportunity to elevate certain ideas, initiatives, and organizations, the advancement of which I believe will improve society. I don’t regret that choice, but it was not heroic; it was deeply personally satisfying.

Even as I enjoyed the experience of being the museum director’s guest for the invitation only Days of Remembrance ceremony at the Capitol and for the tribute dinner honoring one of my personal heroes, General Romeo Dallaire,  I refused further media requests to cover the upcoming field trip. I wanted to preserve the students’ experience and  place the ideas at the center of attention. By publicly spotlighting and elevating these ideals of tolerance, equity, civic engagement, and social justice, I maximize my opportunity to be heard – heard by my students, my friends, and any others who stumble upon my story. It is an opportunity to craft a legacy. An opportunity to use the end of my life to promote the ideals I hold most dear.

My many friends and supporters have gifted me this opportunity to spin straw into gold. I feel a keen sense of stewardship – a responsibility to remain dedicated to these ideals.

These helpers are my heroes:

The tireless and determined education advocates, busy fighting powerful moneyed giants: Diane Ravitch, Yevonne Brannon (and all of @PS1NC), Phyllis Bush, Network for Public Education, Bertis Downs, John Wilson, Marca Hamm, Tom Herbert, and all of @NCFPSC.

The ground troups of dedicated educators doing the largely thankless work: Superintendent Tom Forcella, Principal John Williams, Nicole Hodge (with whom the idea originated), Gloria Sanchez-Lane, Eve Vongchucherd, the entire staff of Phoenix Academy High.

The promoters who dedicated their talents to making the trip a reality: Jeff Nash, Jamica Ashley, Jane Stancill, Jim Jenkins, Rachel Herzog, Kevin Hu, Ron Stutts, all the Facebook, Twitter, and other (real and virtual) friends who shared my story and fundraiser link, and every generous donor.

The supporters whose help, encouragement and love make all possible: the inimitable USHMM staff, my supportive law-school partners in survival (Amanda, Ruth and Ashley), my closest lifelong friends (Susan and Deirdre), every former student and classmate who took the time to email/message/donate, and my family.

They acted to make my vision real. They are heroic.

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An opportunity to celebrate and remember . . .

As the guest of the gracious USHMM director, Sara J. Bloomfield, I attended two solemn, powerful, and deeply moving events honoring the victims and rescuers of the Holocaust. These ceremonies and presentations also promoted the work of the USHMM in combating what I call “otherization” – what honoree General Romeo Dalliare describes as our pathological tendency to segregate ourselves into groups out of a need to validate our own existence by casting ourselves as “more human” than others.

Man seeks in many situations opportunities to elevate the self by denigrating the other – from childhood cliques and sports rivalries to rival gangs, races, religions, or nations, we all too often enjoy the opportunity to validate ourselves by invalidating others. These Days of Remembrance events united those who would name and challenge this behavior. A priceless opportunity.

Of all the things I was privileged to witness, Cantor Marshall Kapell at the Capitol ceremony was most personally memorable. Behind him on the dais are Tom Bernstein, Chairman of the USHMM, the Israeli Ambassador, his excellency Ron Dermer, and the museum director, Sara J. Bloomfield. Listen to Cantor Kapell perform here the El Maley Rachamim (prayer for the dead: 45:00)  and the somber and majestic Hymn of the Partisans (49:50). Each moved me to tears. Perhaps because such music is unfamiliar to me, his voice and the cultural experience it embodied as he chanted the names of the death camps – the only words I recognized in the prayer – seemed particularly magical . . . and haunting. They echoed a collective sorrow which I can  experience as a member of humanity, but which I can never fully understand or share with Shoah survivors, their families, or my Jewish friends.

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Me, waiting in the Capitol for the ceremony to begin, sitting in the first center aisle seat behind the actual program participants and thinking of David After the Dentist: “Is this real life? I was seated directly behind Representatives Eric Cantor and Debbie Wasserman-Schultz. My chair tag said VIP. Is this going to be forever?(Sadly, no.)

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I was joined by Deirdre Hixson, my best friend of 35 years. She’s a VIP to me every day:

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The full ceremony is posted here.

If you were really, really looking (and my children were), you can spot me meeting Rep. Wasserman-Schultz in the right part of the frame at 1:47.

The entire ceremony was profound, the remarks of each speaker potent. But one remark stood out.

In his greeting, His Excellency Ron Dermer, Ambassador of Israel, gave the most effective illustration of the “6 million” – the number of Jewish victimes -  that I have ever heard:

He asked (at 15:25) us to “[t]hink of a 9/11 every day for a century.

I remembered my disbelief watching 9/11 unfold. “Is this real life?

The Days of Remembrance celebrations give us opportunity to appreciate the immensity of the Holocaust that we might ascertain the roots of our self-destructive hatred and counter it with reverence for lives lost, lives damaged, and lives to come.

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Between #DOR2014 events, Group Sales Manager Tami Gonzalez of the W Hotel hosted us for lunch and provided a tour of the lodging and banquet facilities my students will enjoy later this month during Writing Wrongs. Students will be dazzled and delighted.

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That evening, we were escorted by USHMM Director of Youth Initiatives, Dr. Jesse Nickelson, to the Tribute Dinner. In the VIP reception that preceded the dinner, I met honoree General Dalliare (video here at the beginning of the report):

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And the Director, Sara J. Bloomfield, a powerhouse speaker and advocate:

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Here she is, at our table, watching Daillere’s challenging and courageous speech about our failure as a human community to prevent genocide in Rwanda and the mandate for us to finally make “never again” real:

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She and Tom Bernstein, the Chairman of the #USHMM, noted my story and then embraced, shared, and elevated it. I’ll never forget their kindness in including me at these events. Before the dinner, host Allan Holt generously introduced me and recognized me as a partner – an indescribable honor:

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I was deeply touched by the recognition (with the kind and generous Deanie Stein, who subsequently donated a clothing allowance for each of my students):

Special thanks to Jane Stancill for using my statement, “I have never encountered a more powerful teaching tool” in her N&O story. It was a big hit, and has the added merit of being true.

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The Family That Almost Wasn’t

The Tribute Dinner chair, Mr. Holt (“Please,” he insisted, “Allan”) had introduced himself at the morning ceremony, along with his precious father, Irving. The elder Mr. Holt was one of six survivors who lit candles in the ceremony. Allan’s mother also attended, and though in a wheelchair, she insisted upon standing (with her caregiver’s assistance) when soldiers in formal dress carried in the flags of every US military unit that liberated survivors (7:42). Their dignity was palpable. Ineffable.

I told his mother that I had attended the Museum’s summer Belfer Program for teachers and thanked her for her family’s support of the museum, explaining that it had facilitated educators’ ability to communicate the lessons of the Holocaust in hopes of preventing future genocide. Her daughter quietly thanked me for telling her mother that, as though I had done something generous or special. As my friend Deirdre said after the ceremony, “Wow, what an incredibly gracious family.”

Here’s Allan with his (preposterously adorable) parents, who between them survived over ten Nazi camps, including Auschwitz and Buchenwald.

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And the whole family here:

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Meeting the Holt family presented opportunity to think of the people lost. For Allan’s parents who survived, four other European Jews died. The Holts are the family that almost wasn’t, and their presence demands that we remember the families that never were.

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After dinner, Ambassador Samantha Powers made a powerful speech about the need to monitor and intervene in when genocide threatens. She then presented General Dallaire with the prestigious Elie Wiesel award, the museum’s highest honor. Here is Chairman Bernstein with General Dallaire, Ambassador Powers, and survivors of the Holocaust and the Rwandan genocide:

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They then played Elie Wiesel’s video congratulations to General Dallaire:

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Wonderful trip, wonderful people, wonderful opportunity.

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The close of a remarkable day:

With Mariam Lomaskin, USHMM photographer, and Dr. Jesse Nickelson, facilitator extraordinaire:

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Sharing it all with my life-long friend:

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“Opportunity” seems a wholly insufficient to name this experience. It was more. It was a blessing.

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I conclude with this photo of the cadre of Holocaust survivors who attended the National Commemoration at the Capitol. At the dinner, they asked survivors to stand, and guests applauded. But as Deanie Stein somberly noted, there are “Fewer and fewer every year.”

These are the last eyewitnesses, and as they gradually leave us, the work of the museum, educators, and all who hear their stories becomes more vitally important:

We must all bear witness and lift our voices against any assertion that one human is intrinsically more human than another. The Holocaust was not an event of months or even several years; it was a long-incubated and incrementally executed manifestation of hatred, and it began with one discriminating thought,  the thought that the people below – mere children at the time they were targeted, hunted, imprisoned, orphaned, and dehumanized by the Nazis – were less deserving: initially, less deserving of opportunity and ultimately, less deserving of life.

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I will never forget this experience. May we never forget theirs. Because the Holocaust was real life.”

And as we recognize racial and religious hatred in today’s world as well as institutionalized discrimination and inequity in our own society, we should acknowledge, confront, and resist them. For far too many people (not only in other countries, but also here in the United States), inequity – being viewed as “other” and as “less” – is “real life.”

May we take every opportunity to fight this shameful and potentially dangerous reality.

 

Gifts

I am a woman of many words. A lover of language. A vocabulary nerd.

I made my sophomores read this about the importance of precise expression.

I seldom exhaust my supply of synonyms.

Yet here I am in the wake of an outpouring of affirmation, support, and generosity that has stunned me in my lexical tracks. I am indeed (profoundly):

  • overwhelmed
  • affirmed
  • validated
  • moved
  • touched
  • amazed
  • blessed
  • comforted
  • flabbergasted
  • floored
  • humbled

… and

  • gobsmacked.

Owing to the generosity of friends, formers (my students, past), family, and colleagues, the students and staff of Phoenix Academy High School will indeed visit the United States Holocaust Memorial Museum, yet “visit” in no way approaches an adequate depiction of the itinerary that awakes our young travelers. All made possible by the contributions of so, so many donors. (I also have to thank DIane Ravitch and my wonderful NPE colleagues, Jamica Ashley of The Herald-Sun, Jane Stancill of the Raleigh News & Observer, Jim Jenkins of the N&O editorial staff, and Rachel Herzog of The Daily Tar Heel for their generous and thoughtful publicity. No one has ever had a better Warholian 15-minutes than I have, courtesy of these wonderful advocates and journalists!!)

In addition to the $15K+ that came in via online donations in only TWO WEEKS, we received two very special gifts: (1) a kind and gentle stranger from California – a businessman who could have made hay of his gift but asked to remain anonymous – called to say that he would fund any shortfall and asked to simply be notified of the amount we needed, and after reaching our goal, (2) a local supporter of the USHMM reached out to provide a supplemental amount to each participant for the museum shop and “treats.” As if the set pieces were not “treat” enough, bless his genuinely selfless soul! When he wanted to help, I told him that I would love for each student to be able to select a remember stone from the museum gift shop.

He sent me this:

aa's stone

a photo of his stone, and then wrote a huge check to provide not only a stone but also other “treats” to each participant.

I am truly stopped in my tracks by these magnanimous gifts.

Gifts from strangers to strangers, given not for any sort of personal gain but in earnest hope of enriching this world – of making it better by promoting love and tolerance and genuinely equal opportunity for my kids. My kids who so often have to take whatever life has dished out.

The trip itinerary is here: Phoenix Academy Tour of DC. It totally does not suck.

Then came the personal gifts. The donor of the “treats” reached out to museum officials, and the universe rained awesomeness (yeah, I know that’s not particularly impressive diction, but when it comes to awesomeness, our hyperbolic teen term may know no superior). This week, on Wednesday, April 30th, I will be the director’s guest at the private commemoration ceremony during the Days or Remembrance. I am so [insert any word from above list in bold and italics] it’s hard to express, even with the myriad words at my disposal.

The past two weeks’ whirlwind of fundraising and planning have been the best kind of work – the work that you know will bear fruit – that your faith assures you will yield lasting good. But to sit at that invitation-only ceremony on Wednesday – a  gentile – and hear the reading of names, well, no words could ever suffice. That evening, I will also attend the Tribute Dinner at which Romeo Dallaire (NIck Nolte’s character in Hotel Rwanda) will receive the Elie Wiesel award.

My teacher-nerd heart may explode.

Meanwhile, friends are visiting, calling, and reaching out from all over the nation and even from across the pond. I am bombarded by the riches of my life – the gifts I have received but cannot hope to accurately remember (yes, I split that infinitive), much less to adequately appreciate (that one, too).

But here is a sampling scatterplot of blessings:

. . . clean water, two loving parents who made sacrifices to advance my happiness and opportunity, a solid-to-excellent public school education, a decent mind, three university degrees, a body that was almost perfectly healthy for 50 years, chances to travel and live abroad and learn other languages, the chance to experience my grandparents’ farm with a roto-dial phone (a party line, no less) and black and white television that only received two channels, a fairly innocent small-town childhood, the richness of life in two amazing college towns (Athens in the REM era and Chapel Hill in the Moral Monday era), swimming in the phosphorescent waters of Thailand, visiting the Uffizi, Cezanne’s Aix, and L’Orangerie, never being hungry, always having sufficient medical care, wonderful pets, wonderful friends, wonderful family, and especially the wonder of growing two new humans and nursing them and loving them through their childhoods. I survived the Cold War and witnessed first the hatred of people who looked liked me toward those who don’t during integration in Mississippi, and then, though I still see that hatred in much more muted and insidious form, I saw President Obama elected.

I will be “a tar heel dead,” and that make me Happy.

Graduation (18 of 18)

I am a member of a kick-ass, take-no-prisoners, justice-demanding, compassion-hurling church - the one I would create from scratch if called to start a church.

I relish my favorite poem. I relish my favorite music. I relish my favorite people. I suck the marrow out of life with heightened sense of wonder and appreciation.

I have known great and true love – the love of both man and God. And now I look from this new perspective of terminal illness to see how intentionally each thread of my life has been woven and I am in awe. (UPDATE: 4/48: For example, I posted this last night, 4/27, and my church announced this today. Because awesomeness.)

I am clearly much more blessed than cursed.

In fact, for any one of my many blessings, many people might have traded a substantial portion of their time on this rock.

So when people tell me that I am being “heroic” or “have such a great attitude,” I try to tell them some version of this, which is true not only for me, but for many of you:

Not only does “my cup runneth over,” but every day brings precious new gifts.

 

 

 

 

 

 

Why This Trip

Aside

When I was diagnosed with ALS, it was hard going public. Instead of embarking on a second career in law and policy advocacy, I had to figure out how to tell people that I am dying – you know, faster than most people.

I appreciate that social media has permitted me to follow both the small and grand escapades of many former students, long-time friends, long-lost friends, and inspiring new colleagues & political compatriots. Also, the thought of individually telling so many people seemed daunting, and I worried about how would I keep straight what information I had shared with whom.

So after informing the people in my innermost circles, I decided to announce my diagnosis very deliberately on Facebook – to be as candid, informative, and reassuring as I could be. The response has been a very surprising, very public, and very gratifying whirlwind of generosity! So, so, so many people have asked to be part of realizing my desire to take 32 “at-risk” high school students to the US Holocaust Memorial Museum. So here’s how to contribute.

The North Carolina Foundation for Public School Children is acting as the fiscal agent for the project entitled Writing Wrongs: Student Voices for Justice. You can read all about the project and donate here. And I’ll be deeply grateful. Moreover, I can honestly say that as I face the daily, increasing difficulty with walking, I am comforted and meaningfully encouraged when I look forward to this trip and this project with these kids. Thank you.

~~~~~~~~~~******~~~~~~~~~~

But in addition to asking for help funding this project – one I deem to be a truly worthwhile cause in its discreet form – I want to be candid about the broader issue . . . the question at the core of all the major debates raging in our country:

What will be our top priority: the advancement of our ideals or the advancement of our economy?

We can advance both. And we definitely should.

( One of my favorite remarks from Diane Ravitch – and you hear the same message from Pasi Sahlberg here – is: “You aim for equity and you get excellence.” She delivers this line and much more to Bill Moyers here.)

But when pressed, which will we subordinate to the other?

Will we determinedly insist upon justice and true democracy and trust that innovation and competition can survive? Or will we elevate competition, codify privilege and advantage (in campaign finance, contracts of adhesion, and unequal access to education), and embrace social Darwinism? (For you Bible buffs, Matthew 6:19-21 also speaks to this quandry.)

We force our public school students to declare in the pledge that we are a nation “with liberty and justice for all.” The message on the Statue of Liberty purports to welcome the “tired” and “poor” – the “huddled masses.” We love to think of ourselves as a country in which all are truly “created equal” and have equal opportunity from birth.

Unfortunately, the reality is that there is neither liberty nor justice for all (you should go to law school if you don’t want to take my word for it), immigrants face legal and social hostilities (whether documented or undocumented), and “equal opportunity” is a story that the privileged among us (us . . .I am including myself here and this Brian Andreas story is all too true: “I’m much better at the brotherhood of man thing, he said, when I can afford to live in a good neighborhood.”) use to comfort ourselves – to justify our enjoyment of our privilege without having to face, and thus to spend time, energy, and money sorting out, the savage inequities in our society – the prejudices and poverty into which many children are born, not because their parents are unworthy people but because the playing field is decidedly uneven. (As a dear friend recently put it: “We are born on third base, but prefer to believe we hit a triple.”)

But friends, the field is patently uneven, and most of us owe more to the lottery of our birth than we attribute to it. It’s so hard to take the limited time that most of us find to enjoy our lives and families and instead to devote our resources to making the field fairer for others. I get it, but I feel it’s what we ought to try to do. Moreover, I rather passionately agree with this powerful little Colbert master-ditty. 

So if you contribute, I want you to understand that you are giving not to a mere museum visit for some at-risk teens; this trip is intended to be part of a movement, a catalyst for the empowerment and inclusion of voices in our society the messages of which some among us might be uncomfortable hearing.

If I had normal life expectancy, promoting equitable and excellent public education – “choice” and “21st-century skills” for EVERY child in this, the richest country on earth – would be at the core of everything I did.

But I will not get to dedicate the years I had hoped, so this trip . . . it’s me passing the torch. For the more cynical among you, you can envision me throwing a sort of ideological Hail Mary. But I genuinely believe what Margaret Mead so famously said:

“Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.”

In the groups emerging/continuing to contest growing inequity/injustice (Common Cause, Rootstrikers, Public Campaign, Public Justice and Public Citizen – and their state-level counterparts) and in the surging movement to combat the market-based education reform agenda (The Network for Public Education and dozens of state-based organizations, like our own Public Schools First, NC), I find great hope.

And if we keep teaching the great truths – keep inspiring and enabling the voices of our youth – education will save us all.

That’s why this trip.

So please, contribute. But don’t for one moment be mistaken about what you are enabling.

As I face the fact that I will probably not be able to walk through the museum this May on my own power, I take solace in the possibility of this project not being a mere outing, but becoming a tangible step in the advancement of my personal agenda, as articulated by Nelson Mandela:

“Education is the most powerful weapon which you can use to change the world.”

I thought you should know that your money will be used to buy arms.

 

 

 

The ALS Card

“I wish it need not have happened in my time,” said Frodo.
“So do I,” said Gandalf, “and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.”

― J.R.R. Tolkien, The Fellowship of the Ring

First of all, Sunday, when I “went public” about my diagnosis on Facebook, I did not expect – could not have imagined – the utter flood of kindness, support, and ill-deserved praise that would surge into my inbox, onto my Facebook page, and into my text and voicemail.

The most surprising and humbling was the great Diane Ravitch writing this and spreading my story and causes to her many dedicated followers. The irony, of course, is that all I have done all my life was my job (yes, I hope with passion and dedication, but just my job) while she has refused to let significant health issues of her own prevent her from taking on powerful lobbies and monied interests to fight for kids by writing a New York Times Bestseller, founding the Network for Public Education, and incessantly and tirelessly traveling/speaking/blogging to mobilize and support teachers, parents, and advocates. She is the only hero here in the grand sense of the word. (Be sure to watch her on Moyers & CO. this weekend!)

I look forward to blogging the links to the blogs of the tireless unsung heroes who work without recognition or remuneration to battle the wave of market-based education reforms that seemed unstoppable until they built the foundation for the counter-movement. (For a bit of humor to lighten the mood, here is North Carolina’s delightful Dov Rosenberg: https://scontent-a-iad.xx.fbcdn.net/hphotos-prn1/t1.0-9/150316_10151089258278742_49523783_n.jpg)

I’m just an outraged teacher-turned-attorney working hard to stay true to my beliefs and principles. One who happened to get sick.

To get “dealt the ALS card,” so to speak.

And before Sunday, I thought I was ready to play the card with reasonable courage. But now . . . well . . . I cannot conceive how I can ever live up to the confidence and praises expressed by my family, friends and colleagues.

But I hereby pledge to try; I am so deeply touched and inspired.

When I spoke Friday to Stephanie Ansaldo, the director of the wonderful Echo Foundation, about funding a trip for my students to the US Holocaust Memorial Museum, she said something which, to be honest, I had not considered:

“Use ALS; it’s going to use you.”

Now, I need to be very frank about something (and if you know me, you’d not believe me if I professed otherwise): I do not mind a spotlight. As much as I am genuinely determined to pursue certain ideals, I enjoy the opportunity to command the room. Most teachers and litigators have at least a modicum of ego.

On the other hand, I feel a powerful responsibility to play the ALS card (1) strategically, (2) sparingly, and (3) in a manner that it redounds to benefit the causes about which I am passionate.

So . . . to the many kind friends and supporters who have emailed/messaged to ask about donating, the Kickstarter site will soon be active and you will be able to donate to my project – the one at the top of my very short bucket list. I’ll post the link here, on Facebook, and on Twitter. We are calling the project Writing Wrongs; after visiting the USHMM, our students will create an anthology of original pieces reacting to their own experiences with inequity, injustice, and racial hatred. I’ll certainly take that as part of my legacy.

You can also contribute to the Duke ALS clinic here.

So . . . what to do with the time that we are given? The best we can with the cards we’re dealt.

I have the ALS card.

Here’s to winning some tricks with it.