Tails of a 17th Street Geisha

Every 2 years, for the last 12 years, my organization has put on a major international conference for pulmonary hypertension patients, medical professionals and supporters. For the last 6 months people @ my office have worked hard for this moment and for the last 3 weeks or so, we’ve all been working nervously round-the-clock because most of us have never been to a PHA conference before and had little to compare our work too. I thought I was going to be stressed out, tired and working my ass off this weekend. I was a little stressed @ times, very exhausted, and indeed working my ass off, but it was SO much fun.

Highlights from the conference:

1) Seeing a TON of pulmonary hypertension patients moving around in wheelchairs, walkers, scooters and slowly on foot, but smiling and eager to learn and meet others. They came from South Africa, Canada, Australia, India, and Mexico! I ran into a group of girls from D.F. Mexico and had a great conversation that has motivated me to get help in translating all of my support group leadership materials.

2) making amazing people and connecting with some very closely in spite of having only the smallest pockets of time to chat with folks.

3) getting big good-bye hugs from Darby Hetrick, a shy, 3 foot tall, adorable, tiny, big-bright blue-eyed, 7 year old girl who smiles frequently in spite of having pulmonary hypertension for some time now.

4) seeing the product of many countless weeks of working until 8-11pm at night unfold successfully. I had an abundance of volunteers show up at their assigned time and even stop by to see if we needed help. I had the largest turn out in conference history to the 2 volunteer trainings that were organized during conference.

5) giving a speech on volunteerism and having a German doctor seek me out afterwards to let me know how inspired he was to work with patients. he also asked me for tips on getting volunteers and we will work together for his first German PH conference. Of course we also spoke about the world cup and I accidentally let it slip that I was disappointed Sweden lost against Germany (to a german!)

6) Finding the energy to wake up every morning at 5:30 am to workout for an hour. I would schedule it so that I could work out and get into my station by 7 or 7:30am! I have now learned that I am capable of anything!   I realized that my adrenalin can keep me going for at least 5 days. We got in on Wednesday and worked round-the-clock until Sunday afternoon.

7) Managing to party every night with volunteers, patients and staff. After spending 16 hours each day in the hotel without escape, we all had major cabin-fever. For our sanity, we would go for a walk each night and I would convince my coworkers, friends and patients to duck into a pub really quickly for a drink or two.  One night, we even watched lawn-bowling on the rooftop of this one pub!

haivng a board member of my organization tell me that I need to get into stand-up comedy after my 5 minute speech thanking volunteers. I said, "apparently, I need no introduction" (when my boss and PHA president walked off the stage without introducing me.) He quickly ran up and started introducing me by saying: "Debbie does Support Groups. Debbie does the Helpline Volunteers. Debbie does special event fundraising…" I interrupted him and said: "Don’t go there Rino. We don’t need to bring in Dallas. I mean, I’m ‘doing’ Houston [site of our 2008 confernece] already, isn’t that enough?" Later I said, "Volunteers bonded during and after our shifts. For example, I had a great time last night with Support Group Leader Sue Mace’s husband Mike. No wait! I didn’t mean it like that! He was bored, I mean, there was a large group of us that went out…!" It was Sunday morning, the very end of conference and yet another 7am breakfast, and I was making 1100 very exhausted  and often-conservative/christian patients and medical professionals laugh at sexual innuendos and raunchy jokes!

9) getting the attention of local newscasters by being a very rambunctious, obnoxious, and fowl background fixture in their major windows (a la Good Morning America or "Today"). I have pictures of me fake-flashing them, it’s hilarious but I hit my quota on pictures I could upload on friendster

10) As corny as it sounds, I feel like I’m a part of something big, something worthwhile, and something vital. That I’m making a difference in the lives of very courageous people who, in spite of physical constraints that leave them breathless, tired and in pain, continue to work for the betterment of other patients who also suffer.

In the aftermath of her diagnosis of pulmonary hypertension in 1998 (when doctors told her she had 2 years to live) my sister Alex told me that i have to live my life and not move to Texas to take care of her to be with her in her last days. "God has a plan" she said. As christian-y as that is, I listened to her and eventually found a way to do something for her with this organization. I am so extremely happy about my "job" and this conference was a great big old manifestation of the results of our hard work and reasons why we need to continue to work tirelessly for this cause!

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