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,
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.
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 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.
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.
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.
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.
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.
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:
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:
- 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:
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.
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!!!
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.)
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.