“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.

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

  1. Yes, indeed, I cheer you on. When I read your post, my first thought was the following hymn. I will hold you in my thoughts.

    “Hymn of Promise”
    © Natalie Sleeth 1986

    In the bulb there is a flower;
    In the seed, an apple tree;
    In cocoons, a hidden promise:
    Butterflies will soon be free!

    In the cold and snow of winter,
    There’s a spring that waits to be,
    Unrevealed until its season,
    Something God alone can see.

    There’s a song in every silence,
    Seeking word and melody;
    There’s a dawn in every darkness,
    bringing hope to you and me.

    From the past will come the future;
    What it holds, a mystery,
    Unrevealed until its season,
    Something God alone can see.

    In our end is our beginning;
    In our time, infinity.
    In our doubt, there is believing;
    In our life, eternity.

    In our death, a resurrection;
    At the last, a victory
    Unrevealed until its season,
    Something God alone can see.

    Liked by 1 person

  2. Vivian,
    I am stunned and so deeply saddened. It has been a hectic three weeks since Austin. I had intended to get in touch sooner, but alas I did not. Diane’s reposting of your message overwhelmed me today. I need to reread all that you said, as it blurred.

    The simplest goal to help with is getting the kids up here. You know that I am just a short Metro ride away from D.C. Would you be interested in my trying to find homes for the kids to stay in while visiting? When are you planning to come up to DC?
    I love your goals and hope that I can support others as well.
    With my admiration and affection,
    Sarah

    Like

  3. Vivian, I sat next to you in Austin for Diane’s NEP speech. I had no idea you suffered from ALS. I just read Diane’s post about you. I admire your work and your courage. Sending many prayers and good thoughts your way. Thank you for the important work you do.

    Best,
    Sara

    Like

  4. I am cheering so loudly for you from here – I hope you can hear me.

    Have thought of nothing but you today. So moved by every word you’ve written, and am rapt with attention for more. Feel humbled and awed by your response to this challenge. Have loved following your law school journey and your fight for quality public education over the last few years – makes me feel like I know you in a way I didn’t even when you lived here.

    Cheering you on then.

    Cheering you on now.

    GO VIVIAN.

    -Meredith Stillman

    Like

  5. I will be praying for you, and I will send on more thoughts and memories of having you for 10th grade World Lit) soon! May you be able to say, as the apostle Paul, “I have fought the good fight, I have finished the race, I have kept the faith; in the future there is laid up for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day…” (2 Timothy 4:7-8) I am thankful for you, for the peace you have, for the way you have lived your life purposefully and plan to finish it just as purposefully. With love, Hannah (Vandevort) Hake

    Like

  6. Hello, Vivian. Like Sara above, I also have rerouted myself to your blog from Diane Ravitch’s site. I am a high school English teacher who would like to support your effort to raise $15k for student travel to the USHMM. Please, at your earliest convenience, let us know where/how to donate.

    Be well,
    Carissa Morrison

    Like

  7. Ms. Connell,
    I have never had the pleasure or the privilege of meeting you, but after reading your story in today’s paper, I instantly remembered you. More specifically, I remembered the impact your teaching had on my daughter during a low point in high school.

    Math, biology and human sciences were always my daughter’s strengths. In her junior year, she landed in an AP Physics class along with AP Calculus. While her peers seemed to breeze through, she struggled. She later told me that “every time the teacher wrote on the board how many students received an A, B, C, D or F, her confidence sank a little lower when she saw ‘D= 2’ knowing she was one of the two”. She later confided to me that so as no to appear “inept or stupid” she acted indifferent as if she didn’t care, when in fact, nothing could be further from the truth.

    The bright spot during her junior year came from an unexpected place – her English 3 Honors class. Although she said she still felt “inept and stupid”, she was engaged and motivated in your class. In fact, your class was the only one she talked about that year. I remember her saying about her B grade:

    “Ms Connell is a tough teacher, but she’s so passionate and interesting. She inspires you to think and it makes you want to do well. That ‘B’ means a lot to me.”

    Today, Han is a third year Nursing student at the top of her class with a 3.8 GPA and will graduate with her BSN next year. While most at home with classes like pathophysiology, upon completing a World Religions class, she said it was one of her favorite classes. When I asked her what she liked about the class she said:

    “My World Religions teacher reminds me of my 11th grade English teacher. Like her, he is so passionate and motivated. He seeks your opinions and wants you to think for yourself.”

    I can only imagine that my daughter is one of many whom you have inspired and one of many you continue to inspire. Thank you Ms. Connell. You are truly an amazing person and you can count us among your dedicated cheering section!

    Warm regards,
    Toni Hemming

    Like

  8. Vivian- I was fortunate to meet you at the Farm, over several summertime poolside. You were going to law school, and I’m a lawyer; we chatted about your goals and about networking, how to get that elusive job right out of law school. I was and remain so impressed by you. We commiserated about finding law jobs (i was looking to return to work after taking time off to be with my girls). I was struck by how genuine, friendly, uber-interesting and passionate you were. In my humble opinion, teaching is SO much more important and much more impactful than being a lawyer ever could be! Your gifts touch so many more lives in the classroom everyday than would ever be possible in a legal career. Our paths don’t seem to cross much around Chapel Hill, so I was deeply saddened when I recognized your picture in the paper and read about this latest chapter in your inspiring life. I don’t need to wish or pray for courage for you, as you already posses that in spades. I will pray for you though and your dear family, for peace and grace for you all in the months and years ahead. I will follow you on this journey though your blog and hope our paths cross in Chapel Hill again soon. You matter Vivian. Not just to your students but to everyone lucky enough to meet you!!

    Like

  9. Vivian….here’s an updated post. I mentioned Neuralstem to you previously I thought, but do not see my post. May God bless you…and may you get into this trial somehow.

    http://investorshub.advfn.com/boards/read_msg.aspx?message_id=101820596

    “Sunday, 05/11/14 04:43:18 PM
    Re: gaileo6 post# 2584
    Post # of 2601
    I copied this post by errico51 on another board. It reiterates what has happened to Ted Harada from the beginning in a shortened form. It is in Ted’s own words and is very encouraging for all of the ALS suffers. It is his feelings about right to try concerning his treatment from neuralstem. Here goes:
    In 2010, after experiencing weakness in my legs and hands, I found myself at Emory University Hospital sitting across from one of the foremost neurologists in the world. My wife and I sat in disbelief as our world was turned upside down. The doctor explained to us that I had ALS, or Lou Gehrig’s disease. The chilling words — “There is no known cause, and no known cure” — continue to reverberate through my head.
    I was 38. I was facing a future without hope, until I had a chance to exercise my “right to try,” thanks to Emory University and their partnership with Neuralstem Inc.
    A groundbreaking safety study was taking place at Emory involving the injection of neural stem cells directly into the grey matter of ALS patients’ spinal cords. I was told it was only to prove it was safe, that it was very risky, and that it most likely wouldn’t help me. I gave my informed consent to participate.

    Then the most unexpected thing happened. It helped.

    Weeks after invasive surgery, I put down my cane and regained strength throughout my body. Empirical data showed that while I was not cured, they could document me regaining strength. You can only imagine the depth of my family’s joy and happiness, all because we had the “right to try.”
    The Goldwater Institute has crafted “Right to Try” legislation that four states are in the midst of passing and eight others are considering. “Right to Try” allows a patient access to investigational medications that have passed basic safety tests without interference by the government when certain conditions are met:
    1.) Patient has been diagnosed with a terminal disease;
    2.) Patient has considered all available treatment options;
    3.) Patient’s doctor has recommended the investigational drug, device or biological product represents the patient’s best chance at survival;
    4.) Patients or their guardians have provided informed consent;
    5.) The sponsoring company chooses to make the investigational drug available to patients outside the clinical trial.

    I am making it my personal mission to introduce “Right to Try” to the Georgia General Assembly as part of next year’s legislative session. Everyone deserves hope and the opportunity to “try.” Can anything be more inhumane than forcing people to endure a fatal plane crash because the onboard parachutes weren’t approved by a federal agency?

    This scenario plays out in medicine daily. I appreciate that the FDA is the gold standard in drug safety; however, if you or a loved one were facing mortality, would you be willing to settle for a silver standard?

    The research and results of the safety and potential efficacy of this research has gone global. A small glimmer of hope, a commodity previously nonexistent in the ALS community, has been ignited. I regularly receive emails requesting help from people throughout the world.

    Liked by 1 person

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    Like

  12. Vivian…Diane Ravitch let us all know today about your blog, and your illness with the devastating ALS. I am so sorry to learn of this. Your writing is inspirational and I have reread your latest post a few times. I am thinking of you, and sending positive wishes to you…and with love and much respect.

    Ellen Lubic

    Like

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