The 10th Annual Pulmonary Hypertension
International Conference is done.
I stayed an extra day to hit up Sea World. However, Tropical
Storm Debby had other ideas, and I spent two days in the hotel hiding from
sheets of rain and whipping wind. Not so bad though… no amount of cute dolphins
could trump hanging with a friend who makes you laugh so hard your face hurts,
or long talks over bottles of wine. So, it’s all good. Wouldn’t trade it,
actually. Sea World can wait.
And now I’m sitting here on the plane ride home. And while
Conference closed on Sunday afternoon and it is now Monday night, it is just
now I can start to process it all. I kept flipping through my pictures. And
suddenly, my throat closed up and I felt the tears coming. Not so cool on an
airplane… finally sitting still for a few minutes, alone with my thoughts, and
it’s hitting me. I’m a little dizzy with what has happened. It’s a blur, but
bits and pieces are floating into focus and I’m struck, as I so often am, at
the enormity of what I’ve become involved in.
Becoming a part of something that could change the course of
a disease…IS changing the course of a disease. Impacting people’s lives. Meeting
people who rock my little world. Becoming close to other patients… and all that
comes with that. It’s a crazy thing to totally love someone (many someones)
with chronic illness and, more than that, who share your illness. I find myself
feeling sometimes fiercely protective of their care and wellbeing, and deeply
worried when things don’t seem right, and crazy-happy for them when things go
well… and most of these people I’ve only spent a few hours with, if any at all.
Weird.
So here’s the Conference story… how does one describe
Conference? As is so often the case with PH, I feel at a loss for words. Pretty
sure I can find some though.
Highlights…
Starting with the Board Meeting on Thursday before
Conference began. I joined the Board of Trustees just a little over a year ago,
and I have yet to loose the feeling that I am walking amongst giants. For a
while, I was just a little star struck (uncharacteristic for me), and now in
place of that grows a sense of… I don’t know what exactly. I’m beginning to be
able to call these people friends. In fact, I know I can. And it’s a group of
incredible human beings. Each has dedicated themselves to the cause of
fighting PH. Some as medical professionals who have made this their career. Too
many who have lost loved ones and fight on in their honor. A few who still
fight for their children who have the disease. Patients – even a former
patient. Damn. That’s really all I can say. And it’s so crazy cool to sit in a
room that becomes a giant think-tank for PHA, and then a few months later see
those ideas in full swing… like the “Sometimes It’s PH” campaign we launched at
Conference.
I got a chance to do a presentation to the International
Leaders Summit – representatives from all over the world who fight PH in their
own country. I spoke on creating patient connections. It was a cool opportunity
to sit back and reflect on how PHA reaches out to the patient population and
builds platforms that encourages support – very cool.
When I left Conference two years ago, the one piece I still
had missing was the chance to connect and talk with other parents, moms
especially, who had PH and were trying to raise kids. Well, PHA gave me an
incredible opportunity and I was able to chair a patient-led panel with two
great friends so we could address the topic. Wendy and Hannah have both adopted
beautiful kids since their diagnosis, and we were able to talk about our
experiences and give other patients hope that having this disease and a family
at the same time is indeed possible. The next day I also led a support group
for patients on the same topic, also a great chance to swap stories and tips,
and learn from each other.
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| Hannah, Me, Wendy |
And then there was this little assignment I had that has had
me shaking in my shoes for weeks. I was blown away to be asked to be the
keynote speaker for Saturday night. Me. Talk to a room of 1500 people. Crap. I
so badly wanted to say no. The thought was terrifying. And yet, how could I let
such an opportunity pass? So, I said yes. And it was… surreal. I spent weeks
practicing my speech. I even recorded myself on my phone and listened to myself
over and over again (thanks for the idea, Mom – brilliant!).
Well, I’ve done some public speaking before, with mixed
results. Some have gone well and
others I’ve been horribly nervous and shaking, and it showed. Badly. I really wasn’t sure what to
expect with this one. But, I climbed that stage and sat there almost deadly
calm. It is a calmness I have experienced before just ahead of a large event,
it’s a calmness that comes from knowing I was doing the exact right thing. Oh,
and the wine beforehand probably didn’t hurt. ;)
Anyway, I got up there and delivered my speech, and the
response was… well, overwhelming. People were incredibly warm and generous in
their feedback afterwards. A few said things that will probably stick with me
for the rest of my life. I don’t
know. I think I’ll have to let the speech speak for itself (ha – that sounds
weird). I’ll post it when it’s available.
I finished off the Conference hanging out in the Kids’ Room
and did a sign language lesson with them. It was really fun to connect with
some of the pediatric patients and also siblings of patients. We had such a fun
time. I’m a little nervous to see pictures and video from that though – I look
like a nut when I’m jumping around and signing with the kiddos. But they love it, and
it’s totally worth it.
And then there were all these little moments I couldn’t
possibly capture right. A minute or two connecting with someone I’ve known only
on-line. Someone saying something incredibly sweet. The feeling caught in my
throat as I looked at a patient I knew was failing and struggling. Laughing so
hard I lost my breath. The hugs of those who have become dear to me. Eye
contact and smiles when someone just “gets it”. And the tears that well up when
that happens too. Because, truly,
there’s nothing quite like being with those who understand on a profoundly deep
and impossible to describe level what it is to have Pulmonary Hypertension.
Yeah… so, that’s Conference.
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| My Generation Hope Patient Advisory Board cohorts: Joshua, Me, Brit, Sean |
