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:
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 Tavern 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.
[This was the last time I would ever walk unfettered on a beach. A treasured memory.]
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 is the NEA commercial for the North Carolina Senate campaign in which my daughter and I are featured. http://www.youtube.com/watch?v=1BOHO7GpO0Q The title is “Thom Tillis: Terrible for Education in North Carolina.” Hadley enjoyed spending the day advocating for Senator Kay Hagan. (Special thanks to Dr. Yevonne Brannon for this priceless memory.)
- (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:
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.)
Here 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.
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.