Last Looks and Literary Lessons

Alliteration is the laziest literary device. It is the crutch of a writer of inferior talent, and that’s me.

This blog, however, has given me a great deal of joy—finally getting to be a writer to the extent that I can be—all because I was diagnosed with ALS.

If you’ve been here before, you know there was a gap of almost a year between my early 2015 post, “Circles and Lines” (one of my favorites) and my late December post about ALS. There was a good reason: ALS is an unpredictable condition that can accelerate suddenly and without warning. But it’s funny, as many times as I heard it, the control freak in me never really believed that I would not be able to finish all the writing and the projects that I had scheduled in my head.

Never trust your inner control freak.

I was diagnosed in March of 2014, and began a slow deterioration as weakness moved from my left foot into my left leg, slowly up that leg, and began in my right foot. But the first year, I lived an incredibly storied life, packing the highlights and joys of a lifetime into a 12-month cycle of generosity and opportunity.

I’ve written about those.

But just before my year’s anniversary of diagnosis, something changed. I had planned to move in May and to enjoy my home for a while before ALS rendered me a true invalid. I was still pulling myself up steps, I was still walking a bit on a walker. The time when I would be unable to type or speak was, I felt certain, at least a year away.

But have you seen those cartoon depictions of snowballs rolling downhill?

I picture a cartoon with characters’ hands and legs poking comically from the rotating ball as it grows, the people and things within the plummeting mass of snow helpless to control their destination, until it all crashes into a home or a tree and everything goes SPLANG!

This is the analogy of my progression through 2015.

You see, progress is a generally good thing, but in ALS progression means deterioration.

Ironic, isn’t it?

By the time we moved in May to the home I hoped to enjoy for at least the remainder of the year, I could no longer pull myself up steps. In fact I’ve only been upstairs in my new home twice. Spring was difficult. And summer was hell. After a terrible infection in early fall—cellulitis—I was in and out of the hospital for six weeks.

This was the era of my snowball.

As my last post explained in detail, I returned home physically and emotionally drained. By Christmas, I was fully bound to my chair, taking medication and nourishment through a feeding tube, and unable to speak or type for meaningful intervals.

And all the plans I had to write, to visit with the people I love on my porch, and to participate actively in my kids’ lives…well…


At this point, a dear friend is typing and helping me edit, because I only have the use of my right hand. And my voice? Well, it starts out weak in the morning, but by the end of the day is best described as “drunken sailor.” But I didn’t want to leave the blog unfinished. It’s been wonderful meeting people here. It’s been a great opportunity to tell a story. And the feedback I’ve gotten has been incredibly gratifying.

And so I remember Mr. Frost and meditate on acceptance.

Nothing Gold Can Stay

Nature’s first green is gold,
Her hardest hue to hold.
Her early leafs a flower;
But only so an hour.
Then leaf subsides to leaf.
So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay.

—Robert Frost

Then, I keep going while I can.

Before my precipitous decline, I enjoyed several last looks—last hurrahs, if you will—and though almost a year has past, I need to return to those narratives. I remain amazed at the many threads of friendship and opportunity that have sprung from this terminal illness, and I love the powerful testimony of human goodness that they tell. So travel back with me to share these final moments of joy and public life. Share with me these last looks at my miraculously full life.


I’ve stated before that my experience since diagnosis—the connections that have led me from new friend to new friend and the connections revitalized with old friends—has been miraculous in many ways. There is great comfort in the revelation that the threads of our lives are intentionally woven.

In the North Carolina Triangle (Raleigh, Durham, Chapel Hill), there’s a wonderful storytelling event series known as The Monti. Each event invites five people to tell stories on a particular theme: for example, Danger. Or God.

One of my favorite Monti shows was in the beautiful outdoor amphitheater at UNC known as the Forest Theatre. The topic was the Great Outdoors. The stories ranged from a girl who had sex on her back in a bed of poison ivy, to an army lieutenant whose troops had gotten in trouble off-base in the woods, leading to a situation where, to keep his underling out of trouble, he had had to closely observe a wound next to the young man’s rectum to make sure it had not become infected.

Truly The Monti brings laughter and wonder and connects everyone – storytellers and audience.

As a former English teacher, the metaphor of our lives as novels, as stories, is powerful to me. A favorite trivial proverb from my youth is as follows:

You are writing a novel

A chapter each day

By deeds that you do and words that you say

People read what you write

Whether faithless or true

What is the story according to you?

As trite as it may be, I’ve often shared this with my classes of high school students. We often compared our lives to novels. I asked them to imagine that if all of a person’s words and deeds were cataloged, each life would fill many volumes—too many to fit in a library. Yet each of us is only a chapter of our family and community, perhaps only a thin page in the goings of the world, and a mere mention in the tomes that comprise the story of our universe.

Clearly, the idea of narrative and sharing is a powerful one to me.

The man who started The Monti, a project which embodies the power of shared stories, is Jeff Polish. I’d never met him. Interestingly enough, the judge who swore me in and who I met through a law school class, Mike O’Foghludha, had told a story at The Monti. A good Irishman, Judge O’Foghludha is a quite the storyteller. I interviewed him once for two hours, and he told me the story of his family, how his grandfather had refused to respond to the British authorities until they called him by his full Irish name! It was Judge O’Foghludha who had suggested that I do a story at The Monti.

Soon, Jeff Polish called me to see if I might want to tell a story on the theme “Best. Day. Ever.” And I begin to think about this.

Prior to the judge’s introduction, Jeff had never heard of me either. At our first meeting, however, he said, you won’t believe this, but suddenly I’ve met several people who have brought you up to me. Another professor at the law school, Mandy Hitchcock, had told him about me and suggested me for the Monti.

It felt as though I was meant to tell my story.

On March 25, at Motorco, a facility in Durham, I told the story of my best day ever—and it was kind of awesome.

Ironically, my best day ever was the day I announced my diagnosis. Through this blog and the many opportunities I’ve had, I’ve been overwhelmed, embraced, cocooned in the validation and the support that I’ve received in reaction to my story.

And, as usual, I enjoyed the support of many friends and the positive feedback from many strangers. The common trope calls my story “an inspiration.”

(Just a few weeks ago, I received notice that my story was one of three nominees for the (locally) coveted Hippo Award for best dramatic story, and I will attend the ceremony, a storyteller who no longer has a voice.)

Now, I must repeat what I’ve always said: It is not me that is inspiring, it is the ideals which I was fortunate to learn and which I spent two decades teaching to my high school students. It is my faith and peace which emanates not from me, but which are gifts from God.

Please do not mistake these statements for any false modesty. As a veteran teacher, I know that I am “good at the front of the room.” I have never shrunk from public speaking, and I revel in moving an audience. But it’s really important to me that anyone who looks at my story and gleans something positive understand that I am only sharing the wisdom and truths to which my life has led me, often courtesy of amazing people and opportunities that I have done nothing to deserve.

I preach the beliefs that have allowed me to face my mortality with relative grace and acceptance: the notions that truth matters, that the search for truth and meaning is an essential part of every life, that aspiring to our higher ideals is of greater worth than material acquisition or worldly success, and that the courage to speak up for justice, the willingness to engage in service to others, that these things have the greatest value in our lives and certainly have the greatest value as we face our death.

These are the notions that inspire; I am just a conduit.

Nothing consoles me more than a note from a student saying that I mattered. As you listened to my story, I hope you noted how little I did to accomplish that magical trip to D.C. with my students. Note how pieces fell together, how people reached out to me with generosity, responding—again, I insist—not to me as an individual but to the words and to the truth that I was trying to speak.

The trip to the museum, the opportunity to campaign for certain candidates and represent the National Education Association, everything good that has come my way has come because the ideals of my faith, of the great stories, of the literary canon, these ideals resonate, they comfort, they inspire. How odd that it took a diagnosis of a deadly disease to bring these beliefs and this message to the forefront.


As detailed in my previous post, I was fortunate to grow up in a progressive music community in Athens, Ga., in the mid-to-late-’80s. When I got ready to go to law school, it was my dear friend Bertis Downs whom I called to ask, “Should I go to back to Athens or to Chapel Hill?”

I met Bertis because his wife and I waited tables together in 1984. He was R.E.M.’s lawyer, and his wife, Katherine, and I kept roughly in touch for several years after I graduated and left Athens. Bertis was kind enough to advise me about law schools two decades later, at which time we made a serendipitous discovery: each of us had become outraged about U.S. education policy, and each of us was involved in lobbying and research to beat back corporate, “market-based” reforms, and to ensure that every child had access to a quality, and free, public education. He is a board member of the Network for Public Education, the organization led by my hero, Diane Ravitch, and through which I forged many friendships and alliances.

Throughout law school Bert and I kept in touch on these topics, and when I was diagnosed, true to form, Bertis offered to throw a benefit, as I described in my previous post. And last April, at the Cat’s Cradle in Carrboro, I had the amazingly good fortune to join a packed house for a Pop-Up Chorus sing-along of “Man on the Moon”and a screening of the documentary R.E.M. TV.(Special thanks to Brian Lewis of New Frame for filming and editing the chorus.)

The benefit simply would not—could not—have happened without the tireless work of Lauren Hodge. I know it was Lauren’s tireless preparation and event planning that made the benefit happen. She brought together the director and musicians of PopUp Chorus (and by the way, the lead guitarist, Alex Maiolo, is now a favorite Facebook friend. His partner works at my daughter’s favorite shop in town, Vespertine, and they have brought us two delicious dinners!) and hired Deborah Pardee-Miller to promote the event.

Lauren, it turns out, is the wife of WUNC’s signature voice, Eric Hodge, and I’m sure it was her work that enabled me to be a guest on The State of Things. It probably won’t surprise you to know that I’m a huge fan of NPR. During my years of law school, I kept up with what I thought were the egregious moves of the GOP-led North Carolina General Assembly by listening to a radio program on WUNC: Frank Stasio’s The State of Things. When the benefit came along, I was asked to do a full segment of this award-winning radio program. This was the first time I was given the opportunity to tell the story not only of my ALS, but also of the serendipitous unfolding of my life.

(Special thanks to Brian Lewis of New Frame for filming and editing the chorus.)

My dear friend Paul Bland, executive director of Public Justice, spent six hours flying from his board meeting in order to join us and speak. (And my incredibly supportive husband left the event and drove to the Raleigh airport to bring him to the venue after his flights were delayed.) All funds raised went to the Public Justice foundation, to fight for access to courts, consumer protection, environmental protection, and other noble and underfunded legal causes.

It was a wonderful night. I think however that the greatest impact of the event was not the 8,000-plus dollars raised for a cause about which I am passionate; once again, it was the almost magical threads and opportunities that led to and arose from the event.

Who would have thought that a baby born to high school graduates, raised in tiny racist towns in Georgia and southern Mississippi, would end up in a progressive college community that revolutionized and expanded her thinking, generations beyond her upbringing?

Who would have thought she could spend three years living abroad, exposed to people from many countries, learning new perspectives on what it means to live on this planet, and certainly what it means to live outside her own country?

Who would have imagined the language ability she gained through this experience would lead her to a master’s degree and a 20-year career of teaching high school students?

And finally, who would have imagined that this first-generation college graduate would have been inspired by her students and teaching to leave her education career and become an attorney so that she would have the opportunity to have a voice in the public policy matters about which she was passionate?

I could not have imagined it, and I certainly could not have engineered it.

Again, I say my life has been much more blessed than cursed.


I was also interviewed for an alt-weekly newspaper called IndyWeek, the pride of the liberal community in the Raleigh-Durham-Chapel Hill “Triangle.” I didn’t know what I was getting myself into when I showed up to meet their writer, David Klein. Within 15 minutes, he and I were singing Wire songs and comparing notes on one of our favorite bands, XTC. Being a person who is himself passionate about music and justice, and who understands the powerful connections forged by people who, sharing a taste in music, find that they often share the same worldview, David wrote the absolute best piece on the benefit.

Meeting David was like meeting a twin from whom I was separated at birth.

It’s David who’s helping me transcribe these last two blog posts.

It was David who helped me pack for what was really a horrendous and stressful move.

It was David who not only promoted the benefit but who articulated the message that I found so important, which was that progressive music is an important and nurturing component of a progressive culture—of a community that is willing to question its weaknesses, to name its flaws, such as racism, inequality, etc., and to work together inclusively to improve itself and the greater world of which it is a part.

It was that message that united so many disparate people and organizations at the benefit:

  • my children and their friends, all of whom have parents involved with nonprofits and service
  • my closest friends who share my ideals
  • my new friends whom I met through The Monti, The State of Things, and the Indyweek story
  • public interest attorneys from all over North Carolina
  • my favorite, like-minded law professors
  • Paul Bland of Public Justice
  • my old friend Bertis
  • education colleagues of Bertis and mine who flew in from as far as Indiana
  • and the music and legacy of R.E.M., who, from their inception, have spoken up for the underprivileged, for LGBTQ rights, for preservation of the environment, and for fiscal justice for marginalized groups in the United States.

In addition, a wonderful group of my closest former students—the ones to whom I had taught the importance of civic activism—attended, as did others who simply love R.E.M.

Another special guest was Miriam Lomaskin, a photographer who took the amazing pictures of my students at the Holocaust museum. I met her in May, and in January I received her message that I was the first person that she was telling that she had also been diagnosed with ALS.

Like David, Miriam was a soul mate whom I had failed to encounter for 50 years but at last had the good fortune to meet. If I have to die, I’m glad at least that my disease has brought these treasured people into my life.

Some of them visit every week to read to me and type for me. Some of them continue to keep my advocacy work alive, and many of them have become friends and mentors to my children: one is taking them to the local UNC Playmakers production of Sweeney Todd, and another … wait for it … has procured tickets for my husband and children to see Hamilton on Broadway over spring break. (Be glad you’re reading this, because every time I try to tell someone about it, I burst into tears and am rendered mute.)

My voice is virtually gone, but I sang the night of the benefit—I think it was the last time I was able to sing—but it was a glorious consummation of all the threads of my life: my childhood friends, my law school professors, attorneys with passion for justice, my former students, and my new friends—true soul mates—whom I had met only because of the event…because I was diagnosed with ALS.


Clockwise from left: David Klein, Paul Connell, Bertis Downs, Paul Bland, me, and Lauren Hodge after the benefit


How could I have imagined, when waiting tables in Athens, Georgia, with Katherine Downs, that I would go to law school, reconnect with Bertis, and have him connect me to Lauren, who staged the benefit gifted by Bertis that marks the culmination of fabulous events at the end of my life?

As I face my mortality.

Hell, every time I’m told about how rare my disease is, I want to laugh out loud because the events that have followed my diagnosis—the amazing connections and meetings—put the rarity of ALS to shame.

These unlikely events that have formed this magical web in my post-diagnosis life have in common a focus on justice, a belief in love, and a hunger for ideals and goodness.

These cannot cure my ALS, but they can certainly comfort and inspire.

And I would not trade them.


And these are likewise the lessons of literature—the novels we teachers choose to teach:

The Scarlet Letter, which reminds us not to judge and points to the strength of women, the importance of the heart;

The Great Gatsby, which depicts the perils of acquisitiveness and of chasing worldly success; and

Of Mice and Men, perhaps the most important in my life now, which reminds us that we can never plan for an ideal future because…things happen—ALS happens—disappointment happens, and we must learn to cope.

And of course, Plato, who writes of Socrates (as I state at the end of my Monti story), who told the Athenian senate that anyone can escape death if they are willing to say or do anything but that the real challenge in life is not to escape death but to escape unrighteousness, for unrighteousness runs faster than death.

All the people who have lifted me up, supported me, and been a part of the amazing highlights of my life since my diagnosis…well, they are my running partners. We all seek not to escape death, but to escape unrighteousness. And our hearts are indescribably full.

I hope that my message—my insistence that fighting for our highest ideals of justice and for a life of service to others—will outlive me. I speak from firsthand knowledge when I proclaim these pursuits to be the greatest comfort—and perhaps the only comfort one has—when one faces death.

And I hope that this will be part of my personal narrative, the story that I tried to write through my life…

…that these truths will be the takeaway for anyone who reads my story.



The ALS Post


ALS and I are constant companions, intimate friends, and mortal enemies.

I want to remain a functional member of my family and continue to contribute to my community. ALS would see me fully paralyzed and mute, unable to communicate, much less participate actively in the world around me. ALS wants to render me “a lump of flesh in a chair.”

The thing about ALS that differentiates it from so many other enemies is its record: It is predominately undefeated. While approximately one in 1500 ALS patients will plateau or “reverse”, most of the people whom this disease embraces fall conquered within two to five years.

Since my diagnosis I’ve quite intentionally avoided ceding a great deal of my time, thought, and energy — you know, my life — to writing about or “fighting” ALS. As I wrote early on, I did not want my life to become the “all ALS channel.” By maintaining my focus on my advocacy and my family, I sought, and still seek, to deny ALS ownership of my legacy.

On the other hand, it’s important, I think, to share the experience, and thus I give you my one and only post about my cause of death.


Diagnosis and Misdiagnosis

The average ALS patient takes close to one year to be definitively diagnosed.

A whole. Freaking. Year.

It is a “diagnosis of exclusion”: A doctor will conclude that the problem is ALS only after ruling out every other possible cause.

And if you’re super lucky like me, you’ll be misdiagnosed, possibly several times. In my case, it wasn’t that I was told that I had a different disease; my first neurologist, however, told me emphatically that I did not have ALS. Yup. That’s right. I have my medical record in which Dr. Kirk, of Raleigh Neurology, typed into my notes, “I assured Ms. Connell that she definitely does not have ALS.”


He concluded this after an EMG — nerve conduction test. It’s a rather a gruesome test, as the neurologist inserts a needle into each nerve, ankle to hip, wrist to shoulder, pelvis to neck (up the spine), and finally into the neck and under the tongue. The test confirms that the nerves are communicating properly with the muscles… or not.

At the time of my first test, my conduction speed was within the normal range except for one nerve in my left hip. (My left hip had been aching during rigorous walking and running for about three years. I thought it was age or early arthritis.) Dr. Kirk also assured me that if I had ALS I would be experiencing symptoms on my right side as well. At the time only my left leg was weak, and I had foot drop on my left side only. After ruling out spinal impingement and MS, Dr. Kirk said there was nothing else he could do, that my problem was likely an inexplicable neuropathy, and that I should get on with my life.

Yup. Run along.

What angers me, however, is that when I called back two months later to say I felt the symptoms beginning on my right side and asked if I should come back in, Dr. Kirk said no, that he was “absolutely sure” that I did not have ALS, and he saw no reason for me to return.

I still haven’t paid them. They can literally pry the money from my cold, dead estate. (I made several costly decisions in reliance on this misdiagnosis.)

After my primary care provider ran every test imaginable, including a test for Lyme’s disease, she sent me to a Duke orthopedist. He was wonderful. When we asked if it might be my Achilles’, he laughed out loud and said, “You have whole leg weakness: You’ve got to go back to the neurologist.”

This time my provider sent me straight to Duke.

Now, if you think you have ALS and you’d like to the visit the clinic at Duke, you’ll need to have been primarily diagnosed as potentially having ALS, and you’ll need to be prepared to wait four to six months.

Awesome, huh?

As I had no preliminary diagnosis (Thanks again, Raleigh Neurology!) and was not particularly keen on waiting that long, and as my left leg continued to weaken, requiring the use of a lower leg brace to walk, we made an appointment with the “first available” neurologist at Duke. Dr. Chilukuri, a spine and stroke specialist, told me that a) I did not have mitochondrial disease, b) she was not really qualified to discuss motor neuron problems (like ALS), and c) that I might have to accept that I would never be diagnosed and just get on with my life.

Imagine my joy. (I had now been seeing doctors for almost five months.)

But she did ask if I wanted to see Duke’s motor neuron specialist. Ummm………………. YES!!!!! Yes, I indeed do want to know what’s wrong with me! duuuuh.

This appointment with Dr. Chilukuri was in early December. The first available appointment with Dr. Lisa Hobson-Webb, the motor neuron specialist, was February 27th.

And so I waited. Waited almost three more months as my left leg continued to deteriorate and my right foot began to weaken.

On February 27th, I arrived at Duke “with bells on”, eager to learn if I would ever find out what was wrong with me. The truly wonderful Dr. Hobson-Webb spent over an hour just listening. Early into our discussion, I teared up and asked her, “What do you think are the odds that you’ll be able to figure out what is wrong with me? 50/50?” She looked at me confused and said, “Why do you ask that?” When I told her how the other doctors had dismissed me, I saw her jaw tighten and her lips purse. Clearly she had heard this story before and didn’t much care for it.

She then gave an answer for which I will always be grateful: “There is a 90 to 95 percent chance that I will be able to diagnose you.”

Unfortunately I had to endure another EMG/nerve conduction test. She also took ten vials of blood to test for anything that might mimic ALS.

Two weeks later, on March 12, 2014, when all the tests were back, she delivered the news that I did, indeed, have ALS. I was unsurprised — almost relieved. The first words out of my mouth?

“I knew it.”

When my husband asked her how long she had been diagnosing ALS, she told him several years. And when he asked her how many times she had been wrong, she told him none.


At that point, I was still fairly physically able — my leg brace was my only assistive device, and I could drive, walk, talk, eat and function independently — my primary reaction was not sadness, but vindication: I wasn’t some crazy lady or hypochondriac who had convinced herself that she had a degenerative and terminal disease. (Eff you, Dr. Kirk!)

Becoming a lump in a chair then seemed a quite distant prospect.

All that followed – my stories of reacting to and living with ALS – are documented from the beginning of this blog. I tell you this story about ALS itself because it’s worth noting that since the beloved national sports hero Lou Gehrig gave his retirement speech just over 75 years ago, virtually no progress has been made in diagnosing and treating ALS, also known as Lou Gehrig’s Disease.

Why, you may ask? Well, it’s the same reason that there are so few motor neuron and ALS specialists are available, so that patients must wait months and months to be diagnosed: There’s no money in it.

As an “orphan disease”, ALS never builds up a mass of patients or a huge lobby — ALS patients die too quickly to organize and pressure Congress, researchers, or the pharmaceutical industry to invest in our disease.

Last year the viral sensation known as the ALS Ice Bucket Challenge fanned some flames of hope. Over 122 million dollars flooded the coffers of the ALS association and other research advocacy groups. And yet, still, the wonderful researchers putting this money to use are looking for the biomarkers — the cause — of ALS. Why do a person’s motor neurons (in the brain) stop communicating with the muscles? Why do they begin shutting down in different areas? Why do they shut down at different rates?

I have no hope that these answers will come in my lifetime. I am not morbid or unusually pessimistic, but I have, from the beginning, felt that focusing on a cure in my 2 to 4 years of remaining life was not a realistic or productive goal. However I hope these answers will come, in the same way we all hope that cancer, Parkinson’s, Alzheimer’s, and all debilitating diseases can be eradicated to ease human suffering.

An ALS Primer

First, the disease is confounding in its unpredictability. For the first year, my “progress” (ironically, in the world of ALS, progress means deterioration) was slightly slower than average. In late 2014, assuming my rate of progress would remain constant, I anticipated another full year of  reasonable quality of life. For me this quality of life meant the ability to continue to use my arms and hands and… perhaps most crucially… my voice.

In the words of Toby Zeigler, one of my favorite characters from The West Wing, I “tempted the wrath of the whatever from high atop the thing.” As soon as I made plans in my mind to travel to the Network for Public Education national forum and began to draft a series of essays, my ALS hit the gas. From early 2015 through our move into a new home, my rate of progress steadily increased. One morning in January, I could no longer pull myself up the three steps from my car into my home. Suddenly, I was ramp and van dependent. A few weeks later — and this is the fun stuff — I could no longer stand unaided from the toilet.

Folks, after ALS takes your strength, it takes your privacy and your dignity.

In September, a soft tissue infection, initially misdiagnosed as pneumonia (thanks, UNC ER!) put me in the hospital for a miserable week. There, Infectious Disease docs treated me with a trifecta of broad spectrum, kidney-killing antibiotics and sent me home, where they failed to adequately monitor my Vancomycin levels. A week later, violently ill from a toxic level of Vancomycin, I had to spend another horrific day in the ER, only to be readmitted while nephrologists worked with Infectious Disease to switch my antibiotics and ameliorate the “acute renal injury” that their first pharma cocktail had caused. After returning home and finishing out 2 more weeks on IV antibiotics, I had lost 20 pounds, as well as half of my arm and hand strength and a significant part of my voice.


So much for my final plans for travel and the weeks I planned to spend writing on my back porch. All strength for these things had evaporated, and there was no hope that this strength would return.

Fortunately as a person who finished law school at 49 and managed to pass the bar, I must say that I found myself a match for ALS as I simply chose to accept and forge ahead. Sometimes, I laughed; sometimes, in more sentimental moments, I cried – but never in fear or despair.

I had fortunately chosen to stay involved with friends and to travel as much during the spring of 2015 as I possibly could using my conversion van and the companionship of dear friends. I had made final trips to Orlando, to D.C., and to the 319 (home of dear friends in Alexandria, Virginia). I took my family on a trip to Broadway. I hired nursing assistants, and I accustomed myself to living without underwear (“My Life Flying Commando”) and being hoisted with a lift onto the toilet several times per day.

It’s not like a had a choice, but I did choose to accept and, as much as possible, to laugh and forge on. Where many would ask, “Why me?,” I always chose to say, “Why not me, if anyone?”

Many have asked, and so I’ll try answer: What is it like?

First, “It depends.” (If you are a law school friend, this answer will be quite familiar!) Basically, ALS begins in one of three ways:

1) It impedes swallowing and wreaks havoc on the victim’s voice. This is called bulbar onset. Some of the fun indicators of bulbar onset are drooling, choking, and slurring your words like a drunken sailor. Raleigh newscaster, Larry Stogner, fell prey to this version of ALS and resigned because he could no longer clearly pronounce his copy. Often bulbar onset is deemed the “worst” because it progresses most quickly to the diaphragm and respiratory muscles.

Most ALS patients die from respiratory failure.

2) The second common onset is the weakening and trembling of the hands and the upper extremities. Victims of upper extremity onset can walk and talk but grow unable to button their clothes, cut their food, or shake your hand. Imagine velcroing 50-pound weights around your wrists and lower arms, then trying to get through your day. How would you brush your teeth? How would you drive? And, once again, returning to the scatological aspects of life, how would you wipe yourself? This onset is also known as “man in a barrel” syndrome, and once again after sapping the hand and arm muscles of strength until they are paralyzed, upper extremity onset ALS, like bulbar onset, moves on to shut down the diaphragm and lungs. These victims may have the muscle control to climb stairs, but cannot muster the breathing ability.

3) The third way ALS attacks is from the lower extremities. This onset is often considered “the best” because the motor neuron shutdown begins farthest from the diaphragm and bulbar areas. My ALS began in my left foot and leg, progressed to my right foot and leg, and lulled me into a false ( I think!) belief that I might survive closer to four or five years — that I might even beat the odds and survive a decade or more!

ALS is a fickle companion.

During my first year my respiratory numbers decreased only from the high 90s to the low 90s. In the first quarter of 2015 they plummeted to the low 70s, in the second quarter to the low 60s, and now hover in the low 40s. What does this mean? It means that one never knows anything about ALS — which motor neurons the disease will shut down next, how quickly the diaphragm, the hand, or the ability to swallow will deteriorate.

I still haven’t described “what it’s like” to have ALS. Here are a few analogies and examples:

  • Have you seen The Princess Bride? ALS does what The Machine purports to do: It sucks away your life. Unlike The Machine, ALS has no settings, but every time you go to sleep, you know that you will awaken either as disabled or more disabled that you already are.
  • In  May I could still lift my hands above my head to wash my hair; now I can lift my hands no more than a few inches above my lap. I cannot feed myself. And you are reading this blog post courtesy of a dear friend and colleague who offered to type it for me.
  • I feel during every waking moment that I am wearing one of those heavy lead blankets that are used to cover your sensitive areas during an x-ray! All movement is exhausting. On this day, December 21, 2015, I can still move my right knee a bit and wiggle my right toes in a barely perceptible way. I cannot straighten my fingers. My voice sounds as though I’m giving an interview after climbing K1.
  • I cannot scratch when I itch, I choke on water (I’ve had my feeding tube for about a month because I became unable to swallow my meds at night), and I cannot adjust myself in the bed. These are my least favorite things.
  • By the end of the day, I can hardly speak because my breathing apparatuses are exhausted. I struggle to be heard and so, work instead to cultivate my inner life. I am beginning to learn to type and use the internet with my eyes; however the learning curve is maddening, as is being primarily homebound and growing daily more mute.
  • By far, the worst part of ALS is the pain . Interesting enough, the death of the motor neurons and the atrophying of muscle is painless. Unlike cancer, kidney stones, and many other diseases, there is no pain emanating from the condition itself. Also, I have to say, nobody told me about the pain when I was diagnosed. As ALS patients’ muscles atrophy and their flesh melts away, they basically become bags of bones and skin, paralyzed in a wheelchair. For me this means constant lower back pain as my torso muscles become useless — certainly unable to support the weight of my upper body, neck and head. ALS visits its worst pain upon me at night. After sleeping on my side for a couple of hours, I invariably awaken with terrible pain in whichever hip is bearing the majority of my weight. The bone, you see, is pressing the flesh and I am powerless to shift or roll over. Imagine my thin layer of flesh that separates my hip bone from the bed as a peanut butter and jelly sandwich. Now imagine my hip bone, pelvis and upper hip as a 30-pound rock, and put the rock on the sandwich. Think about the way the rock will compress the bread and the filling. This is what I experience once or twice each night, so that I must wake my husband to reposition me…until whatever flesh against the bed wakes me again to protest being asked to bear so much weight with so little muscle or padding. I sleep when my exhaustion becomes greater than my discomfort! I only take meds at night and use as few as possible; life strung out on opiates is no life for me, although I certainly do not judge anyone for seeking the solace of a more pain-free existence.


This is the touchy area.

Sometimes I wonder what some of the most impressive personalities in the ALS community must think of me; I wonder if I’ve let them down, I wonder if I’ve let down my doctor (the amazing Dr. Richard Bedlack, the colorful and passionate director of the Duke ALS clinic and founder of the web project, ALSUntangled): He sponsored me to attend an ALS patient conference at which we patients would learn about the latest research and become advocates for our disease.

I am afraid I haven’t been much of a public advocate.

I still have more passion for saving public education, supporting public interest law, and getting money out of politics. These are the evils that permeate my world and which impact everyone. They are the scourges upon humanity I feel best equipped and most called to confront.

I feel embarrassed to ask friends and supporters to give money for ALS. Don’t get me wrong: ALS RESEARCH IS AN EXTREMELY WORTHY AND NEEDY CAUSE. Anyone who feels compelled should donate. Please.

It just that my having ALS does not, for me, make the disease a greater evil than it was before. To be honest, in my own life, pediatric brain cancers have wrought more death and destruction in the lives of people I know and love. How can I ask for money for a disease which is primarily adult onset while parents I know have lost or are losing their children to aggressive and incurable cancers, which also beg to be researched and cured?

I don’t know. I simply haven’t felt called to be “an ambassador” for my disease, though I hope my experience, documented here, will inspire some greater knowledge and focus on ALS.

Let me tell you what I really hate about ALS: It takes younger people too. Three of the most prominent ALS ambassadors are gifted young professionals with children under 10, and some as young as 3 or 5. It’s different for them than for me. I am virtually certain to see my children through – or almost through – high school; they will know me well and remember me as a complete person. For Jay Smith, Stephen Finger, and the utterly amazing Sarah Coglianese, things may be different, though I hope their progressions will all be slower (as they tend to be in younger people). If you want to see what passionate hope and advocacy in the face of terminal illness, visit Jay’s site here or Sarah’s tragi-comic blog Speed4Sarah where you can learn about the exploits of her now 5-year-old daughter Scarlett, their puppy Otto, and the excruciating journey from power-runner-super-mom to wheelchair-bound, voice-dictation-master who keeps us all laughing and inspired.

These dedicated folks have raised hundreds of thousands of dollars for ALS research. They fight for every moment of normalcy with their kids, from the sand tank wheelchair…thingy… that allowed Jay to walk on the beach with his family to the hysterically malfunctioning conversion van that helps Sarah attend all of the principal functions that the other preschool moms attend.

They are beacons of hope. They refuse to accept that their death is imminent. They deny ALS what I have always seen as its inevitable victory. I admire them greatly; they are passionate, compassionate, and effective advocates/fundraisers.

To be honest though, I cannot think of one project, one trip, or one visit with friends or family that I would trade in order to campaign for ALS funding. I hope, however, that this post might inspire some of you to write a check, if you feel so moved. You see, I cannot proclaim ALS to be more worthy of funding and attention than other illnesses, but it’s sure as hell not less worthy. I want Stephen and Jay and Sarah to be around when their young children graduate high school as much as I want the parents of the cancer kids I’ve known not to lose their children.

Before my 5 weeks in and out of the hospital drastically sapped my abilities, I had planned a visit to Boston to the ALS-TDI Research Center. I was going to participate in their tissue banking, a project to help them find the biomarkers for ALS that will greatly improve the odds of finding treatment or cure. If you’re so inclined, please write them a check.

I sometimes wish I could do more, but I know that we each must answer our own calling, and ALS advocacy simply was not mine.


Let me start here by telling you about a local comrade-in-illness. Steve Reznick, a researcher and professor at UNC, as well as chairman of the board at The Farm (a swimming, tennis and activity center for UNC faculty, staff, and their families), was diagnosed with ALS a couple of months before I was. Like Jay, Sarah, and Stephen, Steve has been a passionate researcher and advocate for ALS. He has been honored by the university and The Farm for his lifetime achievements and for his grace and energy in fighting his disease. We adore Steve and his wife, Donna, who just completed the renovations necessary to make their home accessible, ordered Steve’s wheelchair (approximately $45K retail) and installed a lift to get Steve from the van into their home.

Steve’s team raised the most money in our local ALS walk this spring.

I tell you this story because my experience with this disease and with advocates like the people I’ve introduced above has made me acutely aware of the cost of being seriously ill. Those of us who hold benefits, travel to events, and blog – we are blessed with the resources to to manage life with ALS.

You see, all of us have been able to “keep up” with ALS. We’ve been able to “hit the curveballs” that this wicked succubus of an illness has thrown over our plates. I’m not saying that we are lucky — no one with ALS is lucky; but I think it’s important to remember, acknowledge, and address the fact that there are many victims of ALS (and other dread diseases) who are not nearly financially equipped to maintain their lifestyle in the face of their illness.

All ALS patients qualify for Medicare. If you are fortunate to have been employed or to have had private insurance through a spouse, you might even retain your private insurance as a secondary resource to pay a percentage of what Medicare will not pay.

But you would be astounded at what neither Medicare nor private insurance will cover.

If a patient is, for example, a middle-class single adult living in a 2- or 3-bedroom townhome, it is likely that the only full bathroom in the home is upstairs. A stairlift with any bend or curve will run close to $10K that no insurance will cover. Thus, the patient immediately loses access to his or her master bedroom, closet, and shower. Can you imagine?

And what if the townhome has stairs at the entry? Insurance does not cover ramps or other modifications to get the person in and out of their home. When I’ve asked about how these people cope, I’ve been told that they must convert a lower room into a bedroom and furnish it eventually with a hospital bed that Medicare will actually cover. “But how to they shower?” I ask. “Either they don’t, or they must use a cumbersome, zip-up, portable shower apparatus” I am told. And no, Medicare does not help with the portable shower, or, for that matter, the shower chair or other such hygiene products.

Thus we see “gofundme” pages for ramps, vans, and a plethora of other assistive devices that ALS demands but which our systems deny to provide.

Medicare does pay a percentage of the roughly $30K wheelchair, the $2K for your Hoyer lift to hoist you onto the toilet when your legs give out, and the collection of respiratory devices — ventilators, a cough-assist machine, and a suction machine — which the patient rents. Why rent? Well, each ventilator retails for about $18K. One of the most essential pieces of equipment, if the patient is going to maintain any normalcy as far as getting out of the home, independently shopping, or attending events (in my case my children’s theater and musical performances), is the wheelchair-accessible conversion van. New vans run over $60K. I bought a decent used one for $38K.

Insurance pays nothing towards the cost of these vehicles. Thus, for patients who do not have lucrative careers or significant savings, there arise many questions about life and debt: Do they raid their children’s college fund to buy a van and modify their home? Do they sell their home, uproot their family and downsize in order to gain a more accessible environment? Or do they resign themselves to being homebound in a limited space?

Perhaps the most shocking news to me was that Medicare and insurance generally do not cover “custodial care.” In other words, when an ALS patient becomes unable to brush his or her own teeth, cut food, eat independently, or toilet independently, the patient must either rely on family members or be prepared to pay for private care out of pocket. Imagine a victim who is single and without close family. I honestly cannot believe that in the wealthiest country in the world we allow citizens who are smitten with ALS to suffer or even fall into bankruptcy because we are unwilling as a nation to provide the necessary assistance.

It’s not just about money. It’s not just about sacrificing quality of life. The lack of Medicare coverage actually forces many ALS patients to forgo treatments that would prolong their lives. One of the most common procedures often suggested to extend an ALS patient’s life is a tracheostomy: By ventilating the patient at the windpipe, doctors compensate for the failure of the diaphragm and forestall respiratory failure. But here’s the thing, the trach requires regular nursing care to manage secretions and prevent infection. Without regular quality care, patients with a trach are more likely to develop pneumonia.

And guess what? Medicare refuses to assist with in-home nursing care associated with a trach. In Japan over 90% of ALS patients choose to have a trach and vent. Their national insurance program covers the procedure and maintenance. In the United States, fewer than 40% of patients choose the procedure. While some decline the trach for personal reasons (they do not wish to be ventilator-dependent, or they are perhaps aged and exhausted at living with the disease), many decline for financial and logistical reasons. In these cases, our unwillingness to care for these patients literally shortens their lives.

This past year Congress did pass a law requiring Medicare to cover communication devices for ALS patients who can no longer move or speak. These costly eye-controlled computers allow patients to maintain a voice, but this is merely the tip of the iceberg.

I don’t want this post to be about politics, however, ALS patients in countries with nationalized, single-payer healthcare systems simply fare better than those in the United States. It seems to me that “a great nation” would do better by its weakest citizens. We know, of course, that the majority of states refused to expand Medicaid despite the fact that the expansion would have been covered primarily by federal funds. These GOP-controlled states prioritized their spiteful disdain for the Affordable Care Act over their responsibility to care for the poor and weak. For the best explanation of this, google “John Kasich and Medicaid.” However much I disagree with the Ohio governor, I will forever admire his taking a stand against his own legislature to insist upon Medicaid expansion — to prioritize our society’s responsibility to care for the poor rather than to execute political retribution.

In conclusion, I have to say that even as ALS transfigures me daily into the “lump of flesh” in my wheelchair, I maintain a sincere gratitude for my situation. I have been blessed with benefactors who have helped me build a beautiful, new, fully-accessible home in a wonderful “green” neighborhood community right across the street from my children’s high school. I also have a benefactor who pays for all of my in-home care: Weekdays 7:30am to 10pm and weekends roughly 10am to 6pm. When the time comes, he’s ready to pay for 24-hour care. In addition to these unbelievable gifts, I retain my private health insurance from my years as a public school teacher, and the in-home care I receive allows my husband to remain gainfully employed. Thus — and this was my greatest concern — my children have suffered no major decline in their standard of living or in their hope for the future. ALS has not turned me into a pauper or into a homebound and limited person; I’ve been blessed with the resources to make the choices that are best for my health.

I only wish everyone had the same choices.

I’m not sure what happened to the notion that “there but for the grace of God go I,” but I would strongly suggest that you take a few moments to imagine, “WHAT IF?” — What if it were me or someone I love who was, by no fault of his or her own, stricken with ALS or some other dread disease? Ponder the possibilities and please, remember this story when you elect your state and national leaders.


As I said, this will be my one and only ALS-centered post. As ALS forces my life to contract, I will be focusing more on my inner and spiritual life, as well as focusing virtually all of my communication energies on interacting with my children. In the two upcoming posts — the final two posts of this blog — I will once again detail some of the blessings this disease has brought me via old friends who have provided unbelievable help and support, as well as new friends — really “soul-matey” friends — who have connected meaningfully with me and supported me with all kinds of companionship and assistance. In other words, it will be a post more filled with inspiration and gratitude than this one.

I think, perhaps, that this is the reason I have been so reticent to write about my illness. Even in my worst moment of pain and frustration, I feel like my spirit is triumphant over ALS: I think about the death marches endured by victims of the Holocaust. I think about the almost unimaginable trials and suffering of the Syrian refugees fleeing their homes with virtually nothing.

And I think about Jesus of Nazareth nailed to a cross for hours, hanging in agony and in shame. Did you know that victims of crucifixion also die when they can no longer breathe? So we ALS patients are not alone; in fact, I feel quite comforted to be in such company.

Anyway, I really, honest to God, do not feel sorry for myself. And I hope you won’t either. Remember, we are all mortal. I don’t think that my illness is “unfair” — it just is. Furthermore, among those who suffer from ALS, I feel certain that I am one of the luckiest, and I do not fear passing into the next world.

And so, I wish you all the happiest of holidays as I move on to celebrate and make the most of my remaining days.


Circles & Lines

Welcome to the next installment of the end of my life.  It’s coming together quite nicely.

Last year, after my diagnosis, amazing things began happening for me. The inimitable Diane Ravitch rallied her army of education policy warriors and the Network for Public Education round me, unexpected supporter came out of the wings,


With Bertis Downs at the Network for Public Education’s National Conference in Austin Texas in early March 2014, about 10 days before I was diagnosed with ALS.


and along with fomer students, friends, and law & policy colleagues, we raised over $30k for Writing Wrongs, a social justice field trip to D.C. for my disadvantaged students. The amazing events and impact of that trip are recorded here.

The relationships formed during the fundraising, publicity, and execution of this project continue to enrich my life. Since turning inward to focus on building an accessible house in a green, walkable neighborhood across from my children’s school, I have felt uncomfortably disconnected from the issues I hoped to impact: equitable and excellent public education, campaign finance reform, and public interest law, especially consumer protection. I worry often about maximizing the limited time with my family, friends, and passions.

Despite this struggle, I’ve written that this experience of dying of ALS – dying consciously and with deliberation – is a refining experience. It has made me keenly certain that the threads of my life have been intentionally woven. Though I will never arrive at my intended destination, I can finally see that life is not about the arriving; “it’s in the living.”

The intricacy and trajectory of connections and events that continue to reveal themselves are both stunning and reassuring. There is a pattern not of my own making.

This post begins where I, the career-teacher-turned-attorney-and-activist, really began. And to where I return, thirty years later.

It ends at the end of the line.


Perfect Circles

Strangely, ALS has brought me back to the thing that first led me out of a very sheltered upbringing and into a world of divergent thought – a brave new world of bold & honest living that defied convention. A wholly unprecedented place for this first-generation college girl whose grandmother once begged her (in a rural south-Georgia mobile home with plastic roses and ceramic praying hands) not to visit New York because it was, “an eeeeevil city.” A revelation for a child who had always operated in the matrix and aimed to please its proprietors.

The initial catalyst of my adult life was music.

My interest began in high school with the Beatles, the Rolling Stones, the Who, and other iconic sixties-era artists. I loved Bob Dylan. I felt that I perceived these musicians’ longing and shared their aspirations.

My personal involvement in music began when I went to the University of Georgia to become a veterinarian. It started with a record by XTC called English Settlement, and with four unassuming, independent-minded, talented, and determinedly unpretentious residents of my college town, Athens, Georgia. Billy Berry, Peter Buck, Mike Mills, and Michael Stipe formed R.E.M. and for years, as I followed them and other Athens bands, and as I listened to Fetchin’ Bones, Guadalcanal Diary, and Let’s Active, then to bands like the Velvet Underground, Ramones, Camper Van Beethoven, The Jam, Talking Heads, Replacements and later, Nirvana and the Pixies – well, denizens of my old hometown, Greenville, S.C., called it “weird music.” During the difficult time I lived there after leaving Athens, I felt bereft and alone, and I waited each week for the one hour of late-night public radio that featured “college radio” music.

Of course, R.E.M. would later break out and become the thinking person’s band of a generation. But when I was 21, their music was still edgy stuff, and growing up, I had never been edgy.

Turns out that I liked it.

A thriving scene would grow from R.E.M.’s success (and perhaps their success came about partly because of the B-52s and Pylon before them). This scene would have its share of pretension, conflicting egos, personal dramas, comparatively innocent recreational drug use that sometimes became addiction, and all the downsides of any such scene. I participated in a lot of new things – not all of them good for me. I learned much about art only to discover that sadly, I was not an artist. I fell in love with modern writing, especially Joan Didion, in whom I felt I found a kindred spirit, but sadly, I also was not a writer. I also made the mistake of thinking that this scene would give me answers, when in fact, it asked me questions and made me find the answers –  to what I believed, what I wanted, and what I was meant to do.

People in that community talked about interesting and meaningful things. I read beyond my traditional college curriculum, I learned black and white photography (and still have a few I am proud of; if I had not been so young and eager in my scene-going, I might have more!), I became environmentally aware when reviewed an early book about eco-threats for the UGA student paper (The Red and Black), and I became socially and politically cognizant for the first time in my life.

And the music of these days became the soundtrack of my becoming, as it provoked, comforted, and delighted.

Newsflash: I never became a veterinarian.

My parents, who cleaned houses for extra income in order to pay the out-of-state tuition, all because UGA had a vet school . . . well, let’s just say they still have not forgotten. At one point, when I found myself disenchanted with my core science classes and generally directionless, I took a quarter off to wait tables and just hang out. My father, fearing I would never graduate, said there was only one thing wrong with me and it was three letters: R.E.M.

Bless his heart.

Of course, it was not R.E.M.; it was just me. Looking for purpose, for love, and for joy – sorting it all out.

Growing up in this music scene simply pulled away the veil that my well-intended parents had woven and to allowed me to figure out what I thought about my country and my world, and who I was. It gave me the courage to keep seeking and searching. In retrospect, I am confident that I – the 19-year-old who said she would never become a teacher – owe my three years of living abroad and my two soul-satisfying decades of teaching, especially the civic engagement and social justice work, to the formative experiences I had in the music scene of Athens, Georgia.

For over a decade after I married in 1998, I seldom sought out new music or even had time to enjoy my old music. But I certainly was energized and encouraged when I entered UNC Law school in 2010 and had more opportunities to regularly enjoy my music. Near the end of my 3L year, I even went to a local venue for the first time in two decades when I took my son to his first show: Black Rebel Motorcycle Club at Cat’s Cradle.

And when I was diagnosed with ALS last March, I suddenly found myself with opportunities to see for the first time three of my best-loved bands,

the Pixies:


the Old 97s,


and a show that I thought I would never see, but that am so glad I did –

Dream Syndicate playing one of my favorite albums, The Days of Wine and Roses:



Beneficial Tunes: Redux

After a precipitous decline in my strength over the past few months, I secured a conversion van and began plans to monitor education committee meetings at the North Carolina General Assembly, but then something wonderful came together, an event celebrating the music that inspired my life and benefitting an organization that aspires to affect the social and legal changes I had so hoped to see:


(Special thanks to Chris, David, and Mercer at REMHQ. This event would be impossible without Chris’s art, David’s social media promotion, and Mercer’s legwork. R.E.M. never let me down; I was always proud to be a fan.)

My education policy colleague Bertis Downs, ringmaster of REMHQ – also the man who encouraged me to choose UNC Law and Chapel Hill – offered up this benefit screening of R.E.M. by MTV  and let me choose the beneficiary. At last, I could pay back the Executive Director of Public Justice, himself a huge indy music fan, who had given me invaluable help and support during the arbitration research I undertook as an independent study during my final semester of law school.

During my 1L year, Bertis had also posted a cover of R.E.M.’s “Everybody Hurts” being performed by high school students in Chapel Hill. He connected me to Lauren Bromley Hodge, and my own children have participated in her terrific choral arts programs at UNC, the Community Chorus Project, the Recording Project, and Durham’s burgeoning PopUp Chorus, which is conducted by Seamus Kenney, my daughter’s chorus teacher, R.E.M. fan, and conductor extraordinaire. When I asked her to help organize the film screening, she added a landmark PopUp Chorus to the event. The audience will become a spontaneous chorus, and the songs are video recorded and uploaded for posterity. It’s a terrific experience. My kids and I participated when the ever-generous Frank Heath, owner of legendary Chapel Hill music venue, Cat’s Cradle, hosted a weekend benefit for the Be Loud! Sophie Foundation.


Hadley hoists the HEY at the Be Loud! PopUp Chorus at Cat’s Cradle.


Now, Frank has provided the screening for my benefit to support the Public Justice Foundation.

In fact, as I look toward this upcoming benefit, I remember that R.E.M.’s first benefit shows were for a public interest law entity. So, here I sit, mourning my lost career in public interest law, Bert, Lauren, and Frank’s generosity means I’ll be able to make a direct contribution to the causes I hoped to champion through the music that set me on my path.

Yes, there is a powerful connection between music and culture, and specifically between music that both decries flaws in society and celebrates thought and beauty and people hungry for positive social change. This music, whether experimental or tradition, clever or overt, inspires us to remedy the flaws, strive for authenticity, and serve the greater good.

I did not know it was beginning when it began. (Do we ever?)

I took this photo in 1985 when R.E.M. played its second benefit show for L.E.A.F., the Legal Environmental Assistance Foundation. I could hardly have been further from law school or public service.

image003 (1)

On April 10, 2015, thirty years later, a similar crowd will gather to watch R.E.M. by MTV and record two of the bands iconic hits, all to benefit the Public Justice Foundation, in my honor. And an honor it truly is.

You can purchase tickets here. Alternatively, you can make a donation specific to our event here. Please consider chipping in: Help me help Public Justice help you!


From vet school to the new music scene and into teaching, then to law school and advocacy around education issues.

From waiting tables with Bertis’s wife to taking his advice about law school, then to connecting with the Chapel Hill choral programs run by Lauren Hodge.

From the 40 Watt and Uptown Lounge, through many years seeing no live music, then to enjoying Rhett Miller, the Old 97s, Don Dixon, and Let’s Active at Cat’s Cradle and to having a benefit there for an organization I revere.

And from teaching, to law school, to working with Bertis and so many other quiet, passionate ed-policy heroes, only to have to cope with ALS and a severely truncated shelf life.

BUT . . .then back to a local club where good music grows and thrives and where people who would make a more just world can find solidarity and inspiration in music.

April 10th at the Cradle in Chapel Hill is going to be a great time.

Bertis called it all a “perfect circle.”

I’d say circles, but they are perfect, indeed.


Doing Lines (Redux)

ALS is linear. And for all practical purposes, so is time.

Neither wavers.

ALS points toward decline, and as it does so, the slope of its line seems to increase.

The faster I feel myself declining (ironically, they call this “progressing”), the faster time appears to move. And the shorter the descent is.

I am not so fond of lines these days.

As I travel these lines with neither steering nor brakes, I become ever weaker. The best analogy I can give is Superman being compromised by Kryptonite. Since December, the villain approaching me with the kryptonite has transitioned from a leisurely strolling gait into a gallop. There is no pain, and, as yet, neither choking nor need for breathing assistance.

I am stunned by how my abilities can diminish overnight. Everything is a race with time. A long-planned trip to Japan happened just under the wire; I could not have made it a month later. Likewise, I managed my manatee swim in October; I could not have managed it when I took my family in January.

So far, I am hitting my intervals.

The current segment of my race is between our accessible home being completed and my legs deteriorating to the point that I cannot get down the three steps necessary to exit my home and get into my conversion van. It’s a race I’d like to win, but I feel like a snowball gaining mass and speed, so we’ll see. My husband and kids have become quite proficient in the production/team sport known as “getting Mom out the door.”

I can walk only a few steps with my walker and spend most of my time in my power wheelchair . . .that cost more than my car.

I call him E.T. for what ought to be obvious reasons:


E.T. phone home


Complete with little glowing appendage










The most miserable experience thus far is my growing inability to turn over at night or to sort out my covers and pillows. An extra blanket feels like an x-ray tech has plopped the lead protective tunic on my legs, and I sleep in my left shin brace so that I can grab the brace to move my leg around in my battle with my blankets. Frankly, if it were a physical comedy sketch, it would be hysterical. I am likely to swear and even, on occasion, shed a few tears of frustration. Yet I always manage to extricate myself, and so goes the process. I’m not losing my hair or vomiting; there are no ports and no bloodletting. I can’t really complain.

Getting in and out of bed is a workout; a shower is a marathon. After emerging from the shower stall at roughly the speed of a 300-pound tortoise (falling in the shower is not a statistic I wish to become), I generally wrap up in a towel and kick back for a bit in E.T. (who elevates,tilts, reclines, and raises my legs) before participating in the closing upper arm showcase event called drying my hair.

So if you haven’t seen or heard from me, I’m wrestling with my bed things or having my own personal-hygiene Olympics in the bathroom. It’s darkly comic. Believe it or not, I’m smiling.

Everything is slow and hard, and for a “snap-to-it-let’s-go” person, this has meant a lot of letting go and laughing. Time to wonder why on earth I ever cared so much about certain things. I get along just fine, for example, with a mere a quarter of my wardrobe that I now keep in plastic storage drawers by my bed. The world keeps turning if we all live from clean piles of laundry rather than dressers.

Clean is winning, bitches!

Even a deep breath requires conscious effort, but I can do it. ( . . . bitches!)

My hands are stiff when I wake and my grip is much weaker, but I can still feed myself and type. (see above!)

My core is shot and my chronically aching back struggles to hold me up, but God made yoga pants and Motrin. (Take THAT, ALS! Mama’s got YOGA PANTS!)

I cannot walk, but I have E.T., a scooter, and a conversion van. (Wheels, b******!)

I remain more blessed than cursed. (In all seriousness.)

And no matter what, this fact remains: I can weep, curse, rend my garments and gnash my teeth, but at the end of the day, I will still have ALS. By accepting and laughing and maximizing what I do have and what I can do, I feel victorious.  Likewise, by continuing to advocate for policies in which I believe rather than hurling myself in desperate pursuit of any and every possible cure, I feel that I deny this disease the power to take my life from me while I travel these lines – paths I did not choose.

But I’ve begun to curtail some activities, which is hard. The actual loss challenges my acceptance – so far, acceptance is winning. I know that opportunities missed – for example, I just did not have the energy to fly to the Todos Santos Music Festival before I traveled with my family over MLK weekend – are unlikely to cycle back round and that ground surrendered (I now ask for help with my shoes) is unlikely to be regained. I’ll almost surely be unable to travel independently next year.


But before my rather drastic loss of strength and this upper limb onset, which happened in December and January, I ticked the following items off my bucket list this fall:

  • I took my children on a ten-day trek around Japan. I envisioned it would happen “later in life,” but “later in life” showed up early. They saw me using a second language, they tried new foods, they were immersed, if only briefly, in another culture. We enjoyed the peak of the leaf season, we had marvelous weather, and truly enjoyed each other. It was a gift:

Nanzen-ji, Kyoto.



Shibuya, Tokyo. Scramble



Bamboo forest, Arashiyama.


  • After Japan, my (dear, dear) children asked for nothing for Christmas. We barely got the tree up, and – I have to laugh – our wreaths are still on the front doors. (Life in the rural buffer means never having to say you’re sorry . . . that your holiday decorations are still up in March! That is one of the things I’ve had to stop caring about. Part of me wants to spray paint them Chartreuse and call them St. Patrick’s wreaths.) Yet, on Christmas morning my kids got a call from this guy:
David Hurt: OUR Santa

David Hirt: OUR Santa, and a blessing of my life.

Yes, Santa called. Mom and Dad got engaged at Santa. And years when we could not get to the mall where Santa was, Santa visited our home.

DSCF3710 Santa Visit 2002 # 09 Hagan Hadley & Mom


Santa always looked the same. And while it’s been about five years since last we needed to visit him, he called this Christmas morning, after not hearing from us in years, and told my children the following:

I’m someone you two have not seen since Atlanta. Not friends or your family – yes this is your SANTA!

I told you when asked just what Santa’s about: He’s all love and magic; of that, have no doubt!

So you’ve been to Japan and this Christmas means thrift, and although you can’t see it, you’re getting one gift.

I’m calling to tell you you’re not getting things, but more of the memories great travel brings.

This Christmas there’s no boxes, paper, or tags, but you’d both better hurry and pack up your bags.

Tomorrow at daybreak the sky will be pretty, and you will fly straight into old New York City.

Your parents are taking you there for two nights to stay near Times Square with its tourists and lights.

But what would a trip to Manhattan convey without sets of tickets to shows on Broadway?

And so Boxing night you’ll jump straight in the biz, at the Imperial Theater’s revival of Les Mis.

But musical’s aren’t all they’ve got on Broadway, so Saturday you will be seeing a play:

A hit straight from London, yes this is the right time for The Curious Incident of the Dog in the Night Time.

Then Saturday night is the great big finale, though you’ll be worn out, you will head down an alley.

You’ll see one more show: A bantam, not a flop-ya –(?); you see, it was hard to rhyme Phantom of the Opera!

I hope you’re excited, and take Santa’s tip: be kind to each other on this special trip.

A Christmas in New York can never be bad; you’ll treasure this time with your mom and your dad.

Remember the snow trip, remember the toys; Remember the magic of all Christmas joys.

Add this trip to signs that you’re both deeply loved by Santa, & parents, & creator above.

And when life sends you to the end of your rope; remember the gift behind Christmas, and hope.

It’s a wonderful life; it’s a wonderful trip; enjoy every minute is Santa’s last tip.

And at last, I’ll admit that I told you a big one . . . .You’re NOT seeing Phantom . . .

You’re seeing Book of Mormon!!!


Liege waffel with speckuloos, Belgian chocolate gelato, and strawberries.

It was probably my farewell to New York City. (Midtown would not have been my first choice, but at least I got Wafels and Dinges.)

Here we are with Elders Cunningham (Ben Platt) and Price (Nic Rouleau) of Book of Mormon. My kids were over the moon. They are as yet unaware that I spent their college fund. (Kidding. Sort of.)

IMG_2495 IMG_2496






January brought a final trip; I took my family to Crystal River, Florida to swim with the manatees. Or as my children call them,  sea potatoes with puppy hearts. I waited on the boat this time, unable to get into a wetsuit or to hoist myself back onto the boat. Honestly, I wanted everyone focused on the manatees, not on me. I was able to do this in October, so I wanted them to have their turn:


All this we did, even as I was becoming weaker and weaker. I made the most of every opportunity, checking things off my relatively short list.

I then spent countless hours “making selections” for our home.  It seems likely that I will never again have to shop for a faucet. ALS’s silver lining! This is my last move! We close at the end of April, so we’ve started going through and  packing tubs. Packing will only get harder, in fact, I will be little help, but we’ll live.

One thing at a time. Line by line.


Circles At the End of the Line

My master bedroom will have a large covered porch. Since living in Athens, I have wanted an old house with a porch and a swing. Porches were important in Athens – places to read, talk, and – always, weather permitting – to listen to music, windows open wide.

So when I can no longer travel or, you know, move, I will at least be able to roll (or be rolled) out onto that porch in E.T., and I will listen to the music of my life – of my youth, and of my tribe. Plenty of leisure time, once again. At last.

In The Fault in Our Stars, the charismatic teen protagonist Augustus Waters, cancer patient, is fond of assuring others that he is on a roller coaster that only goes up. ALS is the yin to that coaster’s yang – it’s existential counterbalance. Barring a medical development or divine intervention, my body – my physical vessel – is on a roller coaster that only goes down.

But my mind? Well, my mind retains love and laughter, memories and music.

So my mind will remain always in the perfect circles, sanctuaries into which ALS cannot penetrate.


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.


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.


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.

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:







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


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.

  • (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.

  • 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,

photo 3


  •  Aquarium,


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.


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.


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.


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.


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.


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.


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.


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



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.


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.


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.


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:

DC 005

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:


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)

Vivian Connell School Group Vivian Connell School Group Vivian Connell School Group Vivian Connell School Group












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?


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.


In the POV Lounge.



The lobby of the W.

photo 3(4) photo 5(5)






photo(26) photo 2(4)









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






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.)


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.



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.


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.


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.


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.


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.



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.)


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


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.


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.


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):


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


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:


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:


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.


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.


And the whole family here:


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.


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:


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


Wonderful trip, wonderful people, wonderful opportunity.


The close of a remarkable day:

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









Sharing it all with my life-long friend:








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


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.








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.