The ALS Card

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

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

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

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

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

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

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

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

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

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

“Use ALS; it’s going to use you.”

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

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

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

You can also contribute to the Duke ALS clinic here.

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

I have the ALS card.

Here’s to winning some tricks with it.

Advertisements

“Welcome to the end of your life.” “Thanks. It’s good to be here.”

Or at least, it’s not awful, and I’m not scared. God has delivered on the promise of a “peace that passes understanding.”

____________________________________________________________________________

Welcome to the place I plan to record my final thoughts on all things I deem most important. After two decades as a high school English, ESL, and Japanese teacher, I went to law school. After three years of law school I passed the bar, but took a teaching job because something was going on with my leg, and I needed to figure it out.

On March 12th, 2014, I learned that I have ALS, better known as Lou Gehrig’s disease, and that over the next 2-10 years – most likely 3-5 years – my motor neurons will gradually stop working and I will lose the use of my limbs, then become unable to breathe and swallow, and then cease to be.

Well, hello there, Death! I was not expecting you, yet, here you are.

This entry is a prelude for posts to come.

I will indeed post about the progress of my new companion, ALS, after each visit to the Duke ALS clinic – approximately quarterly. But this will not be the ALS Channel: All ALS, All the Time.

I have a tons more to say.

Before my diagnosis, I had set up this blog and entitled it “Teacher. Lawyer. Kill Me.” with the tag line, “I attended law school because I was troubled by education policy. Now I’m trouble about many more things.”

If my life expectancy were normal, I’d be dedicating my time to these “many more things,” so I’m going to stick to that plan.

  • I want to join my fiery, righteously indignant, kick-ass colleagues in education blogging as we defend the essential civic institution of public education against an onslaught, a wrong-minded and dangerous take-over by private interests that threatens the nature of American democracy.
  • I want to promote and support the efforts of Common Cause, Rootstrikers, MoveOn, Public Campaign Action Fund and others attempting to give truly equitable political power back to every American by reforming campaign finance laws and promoting income equality.
  • I want to beg everyone I know plus everyone I’ve never met to contact their representatives to support the Arbitration Fairness Act – to learn about the incredible perversion of traditional contract law that has occurred in the name of The Federal Arbitration Act. I am dumbfounded by the injustices that lawyers and lawmakers tolerate in the law, and this is a glaring flaw in our system that strips rights from consumers, employees, patients and almost any average person who interacts with a more powerful business entity.
  • And I want to write about the lack of “liberty and justice for all,” even as we continue to indoctrinate students by forcing them to pledge to a flag and declare the existence of equity that simply does not exist in our society. Our system continues, rife with racism, bigotry, gender inequities, and other evils that undermine the best efforts and highest ideals of our society. I am deeply convinced that until we name the wrongs in our communities, states, and nations, we will be unable to ameliorate them.

Yet I am hopeful.

I see in this age of technology the means to deliver to all equal power in the political process.

I see a rising tide of impassioned and truly righteous educators and parents coalescing against power forces to save their children from terrible education policy . . . and making headway.

I see public interest lawyers and zealous academics, some of whom I am now privileged to call friends, pushing back against pro-corporate policy shifts that further disenfranchise average Americans, especially the poorest, the least sophisticated, and most vulnerable among us.

I see strong leaders like Robert Reich and Lawrence Lessig dedicating their considerable talents not to the pursuit of personal gain but to the righting of wrongs.

I participate in a vibrant and impassioned church community that believes faith demands action – speaking up for those who cannot effectively speak for themselves; calling for genuine equity and social justice.

And I have been privileged to participate in the Moral Monday movement in North Carolina as a broad range of people come together to demand compassion and justice from lawmakers.

Through this little blog, I intend to join / continue in this work and to spread these messages until ALS completely robs me of the ability to do so. The outcome is not so important. It is the effort and knowledge that many others are similarly troubled and inspired that imbues the acts with meaning, genuine value, and profound comfort.

________________________________________________________________________________

So welcome to the end of my life.

There’s going to be lots of good fun, food, friendship, and fight on this journey, and you are welcome to come along.

There is great comfort in dying after having pursued my highest ideals with everything in my power. In my law school application, I quoted Plato’s Apology in which Socrate’s tells the Athenian Senate (which is threatening to put him to death unless he will compromise himself) that

“For often in battle there is no doubt that if a man will throw away his arms, and fall on his knees before his pursuers, he may escape death; and in other dangers there are other ways of escaping death, if a man is willing to say and do anything. The difficulty, my friends, is not in avoiding death, but in avoiding unrighteousness; for that runs faster than death.”

My plan to keep outrunning unrighteousness and then to greet death as a friend, just like the youngest Peverell brother in the Harry Potter series.

Feel free to cheer me on.