Sunday, August 28, 2016
I haven't been able to stop thinking Vivian for the past week, nor have I been able to come up with the words that I wanted to say to express my sympathy.
Even though I only met Vivian 3 years ago at the NPE conference in Austin, she had a profound impact on my life. Perhaps Kurt Vonnegut explained it best when he created the term karass - A group of people linked in a cosmically significant manner, even when superficial links are not evident. Here is how ours started. Vivian and Patty Williams were standing in front of me at a beer garden in Austin, and we struck up a conversation about the best choices for a buying a pitcher of craft beer. As we continued the conversation, we all sat together and talked about the conference, about education issues, and about who had the worst state legislature. After a few beers, we bonded about bitchy, mean girl topics, and she even texted me a slightly sacrilegious and inappropriate cartoon. I knew then that Vivian had become a part of my karass.
Throughout the rest of the conference, she emailed me ideas about the direction that she thought NPE should take, and after the conference, I shared her ideas with the Board. After the conference, we continued to share ideas and strategies. On March 9th, she sent me this message:
Well, after running 4-5 miles about 5-6 times per week since May, I did a little turn on my left leg about a week before I took the bar (so late July) and my leg collapsed under me. I have whole-leg weakness. All tests were negative in August, but symptoms of weakness and tingling and loss-of-motion have worsened and spread. Finally saw Duke specialist last week, then has 10 vials of blood drawn and an extensive EMG/nerve conduction test (a repeat). Results due Wednesday, but working diagnosis is Motor Neuron Disease, so it does not look great. Keep it on the QT until I know. I'll make it public aft we find out the diagnosis and have time to share with families and process it.
Thanks for asking :-)a
Shortly thereafter I read her first ALS post, and I was blown away.
Having said that, we continued to write and message when she had the energy, and she continued to send me her great ideas about nearly everything. She inspired me to do things that I have never done for anyone. I still cannot believe that I participated in the Ice Bucket Challenge. I still cannot believe that she invited me to her REM Public Justice event. I still cannot believe that when I saw her for the last time in April, her spirit was alive and well….and that even though she could no longer talk, she could still text with her eyes to say something so outrageous that we all laughed until we had tears in our eyes.
I know that the memorial for Vivian will be jam packed with life long friends of hers. After much thought, I have decided not to fly to NC, but instead I will donate the money I would have spent for the flight and hotel to Vivian's preferred memorial, Public Justice.
For what it is worth, this was Vivian's last message to me.
Vivian Connell
Love you Phyllis, so glad that you became a part of my life.
For what it is worth, I am so glad that Vivian Connell became a part of my life.
With great sadness and profound sympathy, I will close with this:
Goodnight, sweet Vivian. May flights of angels sing thee to thy rest.
Phyllis Bush
