Vivian Riner Connell, diagnosed March 12, 2014 at age 50 and 8 days.
Died August 22, 2016.
After two fulfilling decades of teaching English, ESL, and Japanese, I decided in 2010 to attend law school. Frustrated by education policy, I wanted to model the courage, civic engagement, and pursuit of change that I had long prescribed to my students as essential to a meaningful life. (Apparently, if you teach the Transcendentalists and show Dead Poets Society enough times, then hope, passion, and determination to pursue your highest ideals just take root.) I moved my family to Chapel Hill, graduated in May of 2013 and became a member of the North Carolina Bar that October.
But I had a bad feeling about the leg weakness that doctors could not explain. Fortunately, I passed on a clerkship in order to teach another year and be with my freshman son while I pursued answers. I also got vested in the NC retirement system, and it’s a good thing, since I am not going to have that second career in law and policy!
ALS will rob me of that future, but before it does, “I will sing my song until my voice is gone.” (lyrics by Old Ceremony)
I have been able to advocate for strong public education as an advisory board member of Public Schools First NC and to take disadvantaged students on a donor-funded trip to Washington, D.C. called Writing Wrongs. I will follow this up in February with a benefit for Public Justice, one of the nation’s leading public interest law firms, which advocates and litigates for environmental and consumer protections and for civil, employee, and patient rights. I also plan to attend ALS advocacy day in D.C. this spring. While ALS will take my life, I forbid it to take my voice.
With generous support of family and friends, I use ALS to advance the ideals in which I believe. I have also taken my two teenagers (Hagan, age 15, and Hadley, age 13) to Japan, swum with manatees, and returned to my musical roots, seeing The Pixies, The Old 97’s, New Pornographers, and Dream Syndicate. Next month’s benefit for Public Justice, JUSTmusic, features a screening of REMTV – the music that inspired me in college to pursue an unconventional life – to aspire to courage, service, and social progress.
I wish I could stay, but I am not afraid to go. And I am grateful for the opportunity to live these final years intentionally, with purpose and passion.
You can read my story in (woefully intermittent) posts at vivcon.wordpress.com.
Your story is incredibly moving. My daughter, Beth, is also a face of ALS on Sarah’s site. She is about to turn 27. ironically she did a year at law school in North Carolina and then ended up working as a paralegal in the securities section of K&L Gates in Dc before being diagnosed in 2013. She is now out on disability and living at home with my wife and I in New Jersey. as you probably know it is incredibly meaningful to be able to share your ups and downs coping with this awful disease with others who are doing the same thing. Thanks for becoming a member of our community.
Vivian, Thanks for sharing your story and being an example of a life lived with courage and passion. I was diagnosed when I was 51 and strive to live life well, fully, joyously. I’m not sure who said it, but I’m learning it’s not about the number of breathes you take, but the moments that leave you breathless. Much love to you and your family, you are now in my daily prayers. Becky Kidd
Vivian, thank you for sharing you journey with all of us. I am one of many who are inspired by the strength, dignity, hope and LOVE shared through your story and the the stories and faces of ALS. I am Sarah’s cousin and through her journey I have been connected to all of you.
I both love and hate being able to read about your courageous lives! I hope and pray every day that this terrible disease will be cured!
You are LIVING your life which is more then most people are doing every day who don’t know their journey. They are aimlessly going through life but You are leaving a legacy! BRAVO Vivian BRAVO!
You are amazing.
Wow. I’m deeply moved by Sarah’s grace, the kind responses here, and the connections I’ve made not only with fellow patients but with the people who love them. Thank you all for the generous welcome and encouragement. In this space, we all get to add a really good verse to a lousy song – to make it better.
Parents of TWO of my UNC Law class of 2013 had parents diagnosed within months of me. A member of our pool/YMCA board and professor at UNC was diagnosed the same month, and one of the photographers who worked with the group of students I took to D.C. last May was diagnosed this week.
So much motivation to keep building each other up and celebrating the remaining blessing of each day. Thanks so much for your welcome.
Thank you for your beautiful words. I retain control over how I react to this experience – even in the end, it can’t take that choice form me. I’m going to try to model the grace I find in so many sufferers. We have a unique opportunity to live more intentionally and to pack highlights into our remaining days.
Hi, Claudia. Thanks for the words of welcome and encouragement. It’s nice to learn to value connection and support in a much more profound way. We truly are more of what we do than what we say, and the time people have taken to proffer support and to advocate for a cure – inspirational.
Thank you for taking the time to comment. I’m so glad that we all have the Internet to connect, to affirm, and to be affirmed in return. I can’t imagine how lonely it must have been for people with limited means to suffer 20 years ago and earlier. I *hope* we can all contribute to progress for treatment and cure, but I *know* we can all help each other and set positive examples for our children by living well in the time allotted to us! And that’s not nothing.