Last night, Rob, Scarlett and I watched Ghostbusters. I’m not sure if it was an advisable choice for a six-year-old or not, but it’s too late now, so I don’t want to hear your thoughts on that, Dad. (P. S. I love you!) Scarlett seemed to really enjoy it, particularly the fat green blob attacking a New York hotdog cart and the scene where Ray fell out of bed in the middle of the night after a ghost unzipped his pants. “Is this part going to be inappropriate?” she leaned over to ask me. “Um.” I said.
Rob hadn’t seen the movie since 1984, so I tried my best–mostly successfully–to not quote along with the entire thing, the way I am perfectly capable of doing. Ghostbusters is rated PG, which means Scarlett should definitely be able to see it, since most of the Pixar and Disney movies she watches are also rated PG. But apparently things were a little bit different in 1984, because I’m pretty sure you don’t hear the words prick, pissed, bitch, ass, shit or goddammit in, say, Finding Dory.
Why am I talking about Ghostbusters? There seem to be so many other things to discuss, both ALS related and otherwise. In the world of ALS, BrainStorm released results today from a phase 2 clinical trial that sounds promising, and you can read about that here. ALS TDI introduced a 2.0 version of their Precision Medicine Program that new patients can get involved in right away, and you can learn more about that here. The Republican National Convention starts today, and you can read about that probably everywhere. And the nation and the world are still in turmoil over the seemingly constant senseless killings that permeate the news.
I couldn’t even bring myself to blog at the end of last week, because my brain was so full of stories and events that have nothing to do with the purpose of this website. Louisiana, Minnesota, France, Texas. I simply couldn’t focus on ALS in any kind of productive way.
So with all of that happening, I fell into a little hole of sadness about the world and the way that it works. I got on my BiPAP, and I went to sleep. I watched a number of bad romantic comedies, and I let my daughter play way too much Minion Rush on her iPad. I tried to be kind to my husband, which is all he ever asks for, which means we watched a lot of Tour de France footage together. I took Scarlett to zoo camp. And we watched a movie about a city facing destruction, but of such an unlikely variety that it felt okay, purely ecto-escapism.
During my self-assigned time-out period, the #WhatWouldYouGive campaign broke $40,000. There are now nearly 40 individual fundraisers, and four teams ready to do their part to make ALS history. It’s been really exciting to see the numbers tick up, both in donations and in involvement. Once again, I don’t know all of the team members personally, which is absolutely incredible, because it means it’s not just people who I strong-armed into doing this, with my spindly little arms.
If I allowed it to, the world would scare me. My life would scare me, and the future might seem insurmountably bad. Times are certainly strange, but those of us who are still here have an obligation to ourselves, to each other, to our children, to find what is good. To be what is good. To stand up for each other, even if we weren’t born of the same experiences. To read about people who are different than we are, and to care about things that are happening far away from us. And sometimes, if we have to hide out for a while to deal with all of that, to come back and face it once again.
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Well said, Sarah! There is only a small place for self pity because it takes up too much room and we could all use that room for delight and creativity. Self pity happens, and that pause to feel pain and fear and anger gives us time to rearrange our thoughts and priorities into something stronger than it was before, and hopefully share that strength with others, as you continually do. You are a beautiful soul, and I consider myself lucky to know you and read your blog.
I constantly try to wrap my head around the tragedies surrounding us-needless ones that make no sense at all. Being kind is where we all need to start, to just be kind to the people around us, the ones we love, the ones we don’t know. I try to reach out to as many people I can-and Impact them in a positive way. That, I think is really living. Look at what an impact you’ve made-$40k!! Raising awareness, offering a platform for people who also live with ALS and want/need to be heard-you’re doing quite a lot too!!!!
Absolution captures the feelings about what is goin on ALS, family and otherwise. Your writing is so inspiring and touches each readers soul. I had so many reactions: going to college at Columbia and the scenes from the original movie, having had the chance to sit in personally with Brainstorm and the doctors and see just how promising their treatment is and wanting to tell you and your family everything that makes a nerd mathematician excited about it and being another PMP advocate. I know we are thousands of miles apart but I doubt the distance means anything