Today I was planning to introduce a new Face of ALS, but first, I have to acknowledge some sad news, which is that my friend Vivian Connell died of ALS yesterday. I’ve written about Vivian before, and you can read about her here and here and here. Her family wrote on Facebook that she passed away peacefully and that they felt both “an unbearable sadness and an overwhelming relief.” I also feel a deep sense of sadness, and a pretty healthy dose of anger. I never met Vivian in person, but she was a good friend of mine. Wise and real, principled and generous. I’ve spent the morning thinking about her, and about her husband and two children. Although her death was not unexpected, I find it hard to comprehend, as though she is still sitting there in her home in North Carolina, doing important work, and occasionally standing up and stretching when she needs a break. Because the really weird thing is, in my mind I never pictured Vivian to be sick. Her words never made her seem that way, and her beautiful smile is all I can see. I’ll keep her like that in my memory, and she and her family will be in my heart.
As I say goodbye to Vivian, I am saying hello to another person who shares our disease. Read More>
I know that everyone dies. I’ve known this for as long as I can remember, since I was a child and I had nightmares of losing my grandmother, a woman who will turn 90 in August and remains sharp and active, a fact for which I am grateful.
It’s not that I want to fight death and aging, the way the characters did in Gary Shteyngart’s great Super Sad True Love Story. People are born, and people must die. And in between is the living, with all of the happiness and suffering it entails.
Sometimes I wonder who I think I am to ask people to rally around a cause just because it affects me and my family. Everyone has their issues. And in many ways in my life, I’ve been far luckier than most. Still, I want more time. And I want more quality time, not time spent feeling my body get weaker and my abilities abandoning me like sailors leaping from a shipwreck. I have to remind myself that I’m only 37, and that this is not old, despite the way my body looks and feels. That it’s OK to wish for more time. Read More>
Today I added a new Face of ALS to the site. I hate doing that, hate that there are new faces of ALS, all day every day. But I am also incredibly grateful when people want to share their personal stories. It’s the most important thing we can do to continue the focus on this disease and how it is affecting lives.
There are no good stories of people getting ALS, but Vivian Connell’s seems notable in its irony. She went back to school in her 40s so that she could launch a second career and continue her good work in the world. (I don’t have an advanced degree, but word on the street is that this kind of endeavor can be pricey.) Vivian was diagnosed with ALS less than a year after graduation. Yet, as you’ll read, she has not let it define or deter her. She is an excellent example for her two teenagers and for the rest of us.
You can read Vivian’s story here, Read More>