I have been procrastinating big time on this one. My honoree for Race #8, the Heroes & She-roes – my race – is Sarah Coglianese and I’m afraid I won’t do her justice.
As a blogger, I put Sarah on a pedestal with other she-roes I follow religiously, like Meredith Atwood (who is bi-lingual in two languages I understand: English and triathlon). Sarah and I are unfortunately fluent in the languages of ALS, blogging, being 30-something women, and wishing we could run again.
Sarah’s posts weave together funny, touching, and heart-wrenching moments of life with ALS. She puts words to what many of us are thinking but too inarticulate or afraid to say – a spokeswoman for this small community of young women and mothers, trying to juggle the daily chaos of households, husbands, and homework…without use of their arms.
I have searched this video for clues about the source of her writing genius, like I study her blog posts trying to learn how she neatly assembles such compelling vignettes of living life nearly paralyzed as the mom of a 7-year-old. Like this one:
We left the emergency room three hours later, and on Monday we got her official bright pink hard cast, which she will wear for six weeks. As I said on Facebook the day after the accident, the worst part about it is that it creates more work for all the people who are helping me, meaning Rob, my sister, my assistants…basically a group of people who are not looking for more responsibility. But such is life, and of course I am also impacted by her fracture, because I now find myself waiting longer for help, because she is the priority.
The good news is that she’s already getting used to the cast and is able to dress herself and eat more easily than we had expected. The bad news is that she’s been in a little bit of a funky mood, and recently yelled at me that I was an “idiot git”, a delightful phrase that she picked up from the Harry Potter books. She also told me she was running away, to which I replied “Great, see you later”, because Rob is out of town this week and honestly I have had enough.
As with many of the people I have written about this year, the source predates ALS. It is no coincidence that she used to work for a book publisher. ALS managed to derail her career, but it could not touch her gift of writing. So she packed it up along with her office, pivoted, and unleashed her talents in a new direction.
In many ways, she reminds me of me…or at least who I’d like to grow into being. She’s a pragmatic realist – realistic about the chances for a treatment to help her, but she’s still fighting hard for the research. She’s honest about the frustrations with day-to-day life, but willing to treat ALS as a tragic comedy. It’s tragic, no doubt, but it creates such ridiculous situations that you can’t help but laugh – like her dog Otto’s farting that she can’t get away from because he follows her around the back patio, wanting to sit next to her.
One thing she inspires me to do is to be more vulnerable and open in what I share. In this post, Sarah blows the doors open to expose what terrifies me most about ALS.
I asked her if her writing helps her process her experience with ALS:
Sometimes my writing doesn’t help me process my experience at all, but it does make me feel productive, like I’m doing something with my situation that is worthwhile and important – – even if it’s only important to me. Sometimes I dread writing a blog post, but once I’ve done it I always feel better. It’s a little bit addicting, I suppose, because I like the responses and knowing that people care.
See? Honest. And exactly how I feel.
To my knowledge, she has also devised the most successful social media fundraiser since the ice bucket challenge. In her #WhatWouldYouGive campaign, she challenged family, friends, and companies to give up an ability that ALS patients lose, such as walking, talking, or use of your arms, for a day (or even an hour) to get an inkling of what this disease is like. Thanks to hundreds of people participating and thousands more donating #WWYG has raised $168,000+ for ALS.net and the number is still climbing.
The genius of this campaign is that the participants realize how hard this disease is. As she says:
The main thing that surprised me is how quickly people realized what an impact giving up an ability has. I wondered if it would be easy for people, so that they didn’t really get the full idea, but that was not the case at all. The responses from team members were so insightful, and full of emotions that I have felt over the course of my own illness. It made everything even more meaningful to know that people understand even just a small piece of what it means to live with ALS.
In other words, way more impactful than dumping ice water on your head.
I’ve reached the end of my post and I still can’t say that I’ve captured the essence of Sarah – only some of the ways she’s inspired me. I guess no one tells your story like you can — so you should bookmark and follow her blog.
Recap of my attempt to be impactful via the Heroes & She-roes race. It certainly wasn’t the blockbuster money raiser that #WWYG has been, but the lessons are there, if you (and I willing) to see them.