Life and the Living

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.

No, I would never want to live forever. But I want to live better, and I want to live longer than this new life presumes. On Friday, I read the final blog post from my friend Vivian Connell. Vivian was diagnosed with ALS in 2014 at the age of 50, shortly after finishing law school and setting out to make the world a better place–which it’s clear she had already been doing, based on the testimonials from those who know her well.

Vivian’s post was a goodbye, as she is nearing the end of this disease, and decided to undertake palliative sedation, beginning yesterday. It’s unclear exactly what will happen and when, but her beautiful farewell shook and saddened me. Vivian has written about me and friends of mine, who deal with ALS while parenting young kids. She has written that she wishes for a cure for us more than for herself. Vivian’s kids are older, but still teenagers. Still in need of a mom. I hate ALS for a million reasons, but thinking about kids losing their parents tops my list every time.

Vivian and I used to email each other to check in, and more recently her emails were being typed by her son when he came home from school. I wondered what that would feel like, potentially editing your remarks so as not to upset your child, who could see it all. Then again, Vivian doesn’t strike me as someone who hid much from her kids. The world is a hard place, but I think it was OK with her that they knew that, because she was a role model for how to improve it.

Vivian’s cause was never really ALS. She was all about social justice and education, and that never changed as she got sicker. She is absolutely the kind of person who should be around, teaching others, advocating, living.

It makes me crazy that she has to say goodbye. Crazier still, that there was never any other choice for her once she received her diagnosis. That is why ALS is my cause. Not just because I want to be with my own daughter for a long time, but because I want hope for the future of anyone with a hopeless disease.

There will always be suffering in the world, and there will always be death. There will also always be people trying to help, trying to make this a better place. Vivian is one of those people.

More about Vivian Connell.

Please consider donating to ALS research. #whatwouldyougive

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3 thoughts on “Life and the Living

  1. Cris Simon

    I too read Vivian’s “good-bye” and my heart broke for her, you, me and all our pALS. Precisely why I will continue to advocate for trials, legislation and awareness for this horrific disease.

  2. Linda

    I read your post Sarah and it reminded me that ALS has put me in the company of so many courageous people. I read your posts and think, whew there is someone else who gets it. You are a voice for so many. Thank you for this. To quote my son,” can’t stop, won’t stop.”

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