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.
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.
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.