Of course, your words are traveling across the digital universe right now being posted by
friends and embraced by strangers, who write back wanting to thank you for sharing your life.
So so many people have reached out to me to say “I didn’t personally know Mallory, but she
was an inspiration”.
I think I can speak on behalf of everyone here when I say your writing is special - almost
indescribably so. Your ability to dive down and reflect and introspect, then resurface, before
laying out what most of us could only feel was unparalleled. But we will get to that.
What makes you special to me is much more effortless. I remember, as a child, for the
first time seeing you perform your mandatory therapy - with that decompression vest
accompanied by a mouthpiece that didn’t allow you to speak. Seeing sweet little you with that
big loud machine was understandably startling, but before I could react, you smiled and made
20 years later, and you did the same thing, whether that was at UCLA, Stanford, or
UPMC, or at your apartment or home - when anyone walked into a room, unsure of how to be
or act around the machines, you were there, regardless of whatever was going on around you,
you smiled and made everything ok.
(Now I will address what I am sure to be a completely packed house), Mallory was
popular – like big time popular. And as you can imagine for Diane, scheduling all the visitors for
visits required intense time management. So I’d text Diane and Mal and say I was free to come
by on a particular day or weekend and Diane would promptly schedule for me to come in 30
minutes or so before Mallory would have a therapy that prevented her from speaking.
For the first 30 minutes or so, we’d talk back and forth about school, work, boys, girls,
books, and everything that we could just chat about. Then, right before Mal started therapy,
Diane would remind me that it was my job to speak non-stop to Mal for the next hour and that
Mal would be unable to respond. When this first happened, I realized that I was Diane’s
neighborhood schmoozer whose job was to somehow speak hours on end with incredible
stories from the front lines of my desk job… Still, Mal would start therapy and, once again,
remind me that she wouldn’t be able to respond, so I wouldn’t feel bad if my jokes fell flat, but
of course after I’d say something absurd, like describing the surfboard I took to the face on my
vacation, she’d somehow muster up a “that’s hilarious” through the mouthpiece. Even when
she was in the middle of her therapy, she smiled and made everything ok.
Michelle and I were talking about this last night, it’s hard to find particular stories about
what made Mal so special to us. But really, it was the ease with which she connected to people.
When we spoke with her, it didn’t matter if we were talking about the fundamental atomic
structure of the universe, or about the terrible date I had last night – each moment in either
dialogue felt remarkable. There was so much going on in her own life, but she made sure to
connect and check in and be there with you, no matter how small a moment it was.
Mal, while I relish how you simply made people feel at all times, your writing was
something to be revered, as it is in this moment. There’s a consensus favorite piece that seems
to be everywhere now – you know, the one where you talk about how lucky we are to be here,
in this universe – intelligent beings with purpose and intention – the result of exploding stars
millions of years ago which make up the individual atoms that form us. You remind us that even
if we feel small in the universe that we are made up of those giant stars, merely by chance, and
that, therefore, we should feel big. Well if we are approaching this mathematically and
scientifically, then I agree, we are lucky to be here, and I am even luckier to have ended up
across the street from you 20 years ago. And maybe physics can even explain the reason we are
all here now – you are and always were the biggest, brightest star, and as such, had the
strongest gravitational pull, drawing us in and allowing us to orbit around and bask in your light.
Thank you for starting Lunges4Lungs with Michelle and me. And thank you for
personally thanking each of the hundreds of people who posted videos for the campaign – I
can’t tell you how many people felt like superstars for that. I found a purpose I didn’t know
existed, and sharing your story continues to raise funding to combat CF and lung transplant
rejection. Thank you for inspiring me to become an organ donor – I’m sure I am not the only
one that was moved to sign up after you posted about its importance.
I promise we are not done and I do not think it is a stretch to say that because of you,
the people in this room now will feel responsible to try and eradicate CF from this planet.
I’m so proud to have you, Micah, Mark, and Diane as family, if they have room for the
goofy kid across the street. This, now, giant family will make sure to let the world know about
your light and we will use it to make this world more like it should be - like you Mallory.