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. I admit to obsessively poring over the #WhatWouldYouGive campaign results. Multiple times a day. I check to see who has joined the team, what we’ve raised, and how close we are getting to our goal. Not long after we launched, I began noticing a name that was unfamiliar to me, next to a number that seemed to just keep on rising. l didn’t know who Christina Mallon was, but she obviously had quite a network of support and some relationship to ALS. I looked at the pictures and comments on her fundraising page, and although I was hoping she wasn’t the one with the disease, everything I saw made it seem like she was.
I reached out to Christina through Facebook, and she agreed to tell her ALS story here. Symptoms at age 22, diagnosis at age 26. What are the right words to describe this? I find my anger once again easily accessible. But Christina has a great attitude, and she is one hell of a fundraiser. I hate that she is on our team for this reason, but I’m grateful to her for choosing this campaign and for sharing her story.
One thing I especially like about Christina is that as she continues to reach her goal, she raises it. Because of course those of us with ALS won’t really meet our goal until we get our lives and our bodies back. We’re aiming for $200,000 in this campaign, but if we are fortunate enough to achieve that, we will keep climbing. For Vivian, for Kevin, for everyone we’ve lost, and everyone we are trying to save.
Donate to Christina Mallon’s #Whatwouldyougive fundraising page.
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So, so happy to find a network of fighters.