OK. Big news; long post. (Longest. Post. Ever.)
On March 12th, after months of investigating leg weakness that started just before I took (and passed, thank God!!) the NC bar exam, I was diagnosed with ALS, also known as Lou Gehrig’s disease. It is progressive and terminal. My likely life expectancy is 2-7 years, but more likely 3-5 years.
And I am at absolute peace with this. Of course, it will be harder on friends and family I leave behind, and I want to inform you all. I have, of course, told family and closest friends, but many of you-
My delightful and beloved former students with whom I LOVE staying connected;
My law school friends and colleagues who participated in one of the most worthy experiences of my life;
My old friends with whom I’ve been able to reconnect and whom I’ve really enjoyed keeping up with through this crazy social media thing;
My newer but no less dear friends and associates whom I’ve met advocating for issues about which we are passionate: consumer protection, the preservation of free quality public education, and campaign finance reform – all issues serving the ideals of genuine liberty and justice for all; and
My family, friends, and neighbors from many seasons of life -
You are all important to me in diverse ways, and I do not have the energy to tell you all individually!
Everyone asks, “What can I do?”
What can you do, you ask?
Well, I made a handy dandy list of affirmative steps and invite you to consider doing one or more of them:
1) PLEASE Read this whole post and LIKE it. I will know that your LIKE does not mean that you are glad to hear that I am terminally ill. But I do want to know who knows!!
2) Do respond in any way you like through a Private Message or email, but please don’t post about it on my wall. ALS will win this war (unless I am 1 in 1700 or unless some miracle happens in clinical trials – and you can feel free to hope for that!) but I intend to win all the daily battles. I want to continue to work on issues I care about and interact here on Facebook as I always have. I am determined, as I write in my first blog post, not to have my life become “The ALS network: All ALS, All the time.” I have a LOT of living to do. I get to participate in the internationally known Duke ALS clinic and will likely have more months of quality life because of that, so I feel blessed among the cursed . There is no fighting this and no painful treatments or chemo to endure – I get to plan and enjoy the rest of my life for as long as I can, which is a genuine silver lining.
3) Help my two children know and remember their crazy mom. If you have a memory or story you’d be willing to write and share, that would be the greatest gift. Formers, some of you have written very touching and complimentary notes and messages of thanks. I have saved lots of these and will be collecting them for my kids. So any stories or comments anyone is willing to relate would be deeply appreciated by me and probably treasured by my kids after I experience my “early check out” from this big hotel where we are all staying! Leaving my children as much of me as I can is my #1 priority. I have created email accounts for each of them and I am trying to write them a message a day for the remainder of my life. If you snail mail something, I will put it in the photo and scrapbooks I am starting; alternatively, you can send your remembrance(s) it to their email accounts; message me for info about this if you are so inclined.
4) Help me do THIS: I want to raise about $15k to take our 32 students at the alternative high school here in Chapel Hill to the US. Holocaust Memorial Museum. Many of them have never even left the area, much less the state, but they are fascinated when we teach about the Holocaust. Many of them have also encountered racism and cultural hatred, and a full day at the USHMM would make a permanent positive impact in their lives. I probably cannot work another year; therefore, it is important to me to make this happen for these young people – “my kids.” I hope to have the crowdfunding site up within the week, and I will post the links in the comments here as well as in a separate post. (Many of you know that I was a world and American lit specialist. I was also a Belfer Teaching Fellow at the Holocaust Museum and taught the Holocaust for many years; therefore I am uniquely qualified to prepare our students, train chaperones, and take steps to maximize the benefits of this trip for my students.) So when I post it, you can make a small donation, then share it with friends and family; this will be my last major act as a teacher.
5) Follow my blog: vivcon.wordpress.com. Post comments there, and I will be both grateful and excited. I will be as prolific as I can after this academic year ends. I will blog primarily about the issues that drove me to law school and have become passions. After every quarterly visit to the ALS clinic, I will post an update on the progress of my disease, as well as an update on my family. Chances are I’ll feel pretty free to speak my mind on a number of issues, so you should feel free, but not obligated, to join me in this journey.
6) Make a donation to the Duke ALS clinic. The international ALS community is currently excited about a recent clinical trial that shows great promise, though it is in early stages, and, I should be frank, is unlikely to change my fate. It is a stem cell procedure that for the first time, actually reversed the progress/damage in mice. One of the 12 patients who participated in the first human trials has responded similarly. Only one. But this is one more than has ever improved in the history of the disease, so we’ll take it. Duke is trying to raise $2 million to run a trial on 5 patients. Yep. It’s $300k per patient. And there is no great lobby for ALS research: patients do not live very long, and only 1 in 100,000 people develop ALS. (See. I always knew I was special. You are supposed to laugh.)
7) If you benefited from my passion/efforts as a teacher and/or are so inclined, please support Public Schools First, NC. LIKE their Facebook page and pay attention to what is happening in this state. Resist market-based education reforms and fight to maintain in your communities and state the equitable access to quality education for EVERY CHILD that is ESSENTIAL to a just society and a healthy democracy. Like I said every time we “pledged allegiance” in my classroom: “ . . . with liberty and justice for all . . . SOMEDAY, IF WE ALL WORK AT IT.”
8) Reach out or visit if you are inclined! We are selling our Charlotte home and putting down roots here in Chapel Hill, where we plan for the kids to finish school while I receive care at Duke. Call or visit. Things are pretty crazy now, but chances are, if you are someone who would want to visit, then you are someone we would love to see.
9) And finally, share and tell others so that I do not have to have this conversation ad infinitum!! To my wonderful new NPE friends from Austin: I took so many business cards from wonderful education advocates, but I may never get to contact everyone. Please make sure everyone knows why.
10) I have few regrets and feel very privileged to have lived the life I was given. Do not feel sorry for me or for my family; I am confident that the Maker of All Good Things will manufacture blessings from my experience. I certainly hope to walk this path in a manner with gratitude and grace.
I have enjoyed, and will continue (hopefully for several-many more years) to enjoy walking through this life with all of you. And I certainly plan to spend my time investing in my kids and advocating for a better North Carolina, a better nation, and a better world. That seems good practice, even if one does not have ALS, right?
As my students have heard me say, regardless of what we each believe about our ability to “Change the World,” we all DO change it: we each make it a little better or a little worse. I have tried to live with a determination to be on the right side of history and, when I could muster the strength, the generous side of kindness. I certainly have won some and lost some – I am not the gentlest or most patient soul – but I hope I have made the world a bit better, and I have a very short bucket list. I wish you all the courage to aspire to your highest ideals and the blessing of facing the end of your days with as few regrets as I have.
THANKS for reading to the end, and please LIKE the post.
Not my will, but God’s will be done. It’s really OK.