In 2010 I was attending my first PHA International Conference. I had been asked to sit on stage at a breakfast event, one speaker on a panel of "Next Generation of PHA Leaders", a request that left me rather surprised. At that time, I had no idea about the crazy ride I was embarking on with PHA, or the rolls I would find myself in, still to this day looking behind me thinking, "Don't you want someone else for this? It's just me here..."
Anyway, I was there because of my activity with Generation Hope. The young adult group I helped co-found. Others were there for their fundraising, advocacy, and awareness work. Near me sat a beautiful young lady named Lauren Johnson, just 17 years old. She was a fundraiser and worked to get her story in the media. She was articulate. She was effective in her efforts. She was full of life.
She died yesterday.
Still in college. Unexpectedly. The best I can gather, after a very rapid decline nobody could see coming. I hadn't spoken to her since that day in 2010, but that doesn't really matter. Because when this happens, it is always personal. Always.
I saw the news pop up on my Facebook newsfeed. The way I most often get word of a passing (totally bizarre). I just stared at her face. Numb.
Yes, this time it is just numb. I feel like I should feel something. And I can't, really. Because if I feel anything through the ones like this - the ones where PH just suddenly strikes and takes someone who seems fine, it opens up a shit storm I don't know how to face. It starts with the knowledge this will happen again and again, and it ends knowing that it could just as easily been me.
So many times, people say to me, "You do so much!"
My answer: She died from the disease we share. Every month it seems, I watch this happen. So, it isn't enough. Ever.
All I can say is that until I no longer have to feel (or try not to feel) the impact of person after person passing away from my disease, then my fight will never be enough.
Together though... if everyone kicks in more than they are able. Maybe these stories will no longer haunt my days.
In Lauren's own words, "It is hard, because we don't have... something everybody knows, like breast cancer, or diabetes, or tons of different diseases...we have something that nobody really knows, and we're the only ones that can fight for it... We're our own advocates."
This is the link to our video: https://www.youtube.com/watch?v=9cLrXGxsQ2c
Our section starts about 11 minutes in.