As you may recall if you are a regular reader of the blog, I have been posting the beautiful words of Vivian Connell. Vivian is dying of ALS, a degenerative and terminal disease. She started a blog soon after getting the diagnosis. Her blog is called FinALS. She gave her friends regular updates on her condition.
This is her final post.
I first met Vivian a few years ago at what was called the “Emerging Issues” conference in North Carolina. I talked about the terrible things that were being done to schools and teachers. She was on a panel of teachers who left teaching, moderated by John Merrow. She left teaching to become a lawyer to pursue her passion for social justice. She couldn’t leave teaching and she was soon back in the classroom. She joined the Network for Public Education, and we met again at our first annual conference in Austin. I later learned that she was a very dear friend of Bertis Downs, one of our board members.
In my view, the best thing I ever accomplished with this blog was to help Vivian raise the money to take her class to the Holocaust Museum, one of the items on her bucket list.
This is how her last post begins:
[Prelude: It is June 24th, and I have at last finished my final post for finALS. It is not the masterpiece I dreamed of writing, but I am not a writer, and it is from my heart. This Monday, my medical team, husband and I will explore palliative sedation to manage the terrible choking and gagging that now dominate my waking hours. Some people adapt; some never wake up.
Before I go, I must spotlight my husband, Paul Connell, who has, from the beginning, eschewed any limelight. Never has a spouse been more constant or devoted. And though we each have big personalities that clash, he has never wavered in his devotion or care.
I dedicate all I have accomplished in law school and after my diagnosis to Paul, without whose selflessness, I could have done little.
Well, I am back at last.
My doctor has called in hospice and used the phrase “last few months.”
And I have been paralyzed by the composition of this post.
You should all thank my writer friend David Klein that you are not reading my original idea. It involved stories of seeing Ken Burns speak in 2008–a version replete with quotations and commentary, I assure you–of how I wove segments from my beloved TV favorite, Aaron Sorkin’s West Wing, into my teaching (again, with no shortage of inspirational anecdotes) and of how I discovered that the author and star of Hamilton, Lin-Manuel Miranda, shares my love for the show.
But this is not to be an artful feature delineating again the ideals that inspired my teaching or the late-life leap to law school that validated my life’s work and filled the 27 months since I was diagnosed with ALS with wonder and opportunity. And I would love to regale you with the story of my Network for Public Education friends and colleagues visiting my home with both a signed first edition of To Kill a Mockingbird ( I know, right?) and my education policy hero, Diane Ravitch. I want to describe the tears of joy I cried when they left and the tears of joy my family enjoyed when we were gifted tickets to Hamilton! My husband wept because I couldn’t go. I bawled like a baby because they could.
And I want to tell you how my daughter ended up with an older script of Hamilton that Miranda had given to a journalist!
But this is not another post about serendipitous meetings and virtually miraculous joy that have so fully packed my life since I was diagnosed with this heinous, degenerative, and terminal disease.
I have covered my blessings pretty well.
These are to be my final words. Not a lesson from a dying teacher. Not an argument from a dying lawyer.
But one last time to attempt candor and artless honestly about my passions, my regrets, and wishing that this cup could be taken from me.
A LAST LITERARY LESSON
It feels important as well that I not leave anyone thinking too highly of me.
I was blessed to accomplish much I am proud of, mainly because I genuinely bought in to the best ideals of those before me and found the courage to follow my callings–to strive always to do more and do better.
Deepest thanks to my teachers and heroes.
I would be terribly remiss, however, if I failed to share at least a few of my representative fears and failings.
I’ve thought often of Hawthorne’s exhortation in The Scarlet Letter:
“Be true! Be true! Be true! Show freely to the world, if not your worst, yet some trait whereby the worst may be inferred!”
While I will not spend this post mimicking the poor guilty minister’s self-flagellation (you’re welcome), I will be sharing some of my less admirable choices. In retrospect, in fact, I am certain that my shame and regret–my failures–motivated me to keep striving to do better.
A loud conscience is a benefit, I think. At long as it brings about striving to do better rather than paralysis via self-loathing.
I diverge from many of my progressive parent friends because I take to heart that a reasonable and loving authority figure is healthy and character building.
I have no regrets about that aspect of my parenting: I think my kids knew that we rode them because we love them.
And I think this model is more effective when I ride myself equally.
And I encourage you not to procrastinate or ignore an urge to change or do better. Following these feelings brought all the most rewarding experiences of my life. And though I am far from done–though I have more public ( political) and private ( personal) battles to wage and improvements to make, I am out of time. And terribly sad about it.
This is only the beginning. Read it all.
Farewell to a beautiful soul. Farewell, dear Vivan. You have inspired us all to care more, do more, struggle more, and live our lives in accord with our consciences.
I am not a religious person, but you inspire me to plumb my faith. May God bless you. May God welcome you with open arms into heaven, where angels will shower you with love forever and ever. Please watch over us and guide us to follow your example.