Wednesday, May 6, 2009


I had the week-end to end all week-ends, and then some.

I left Hartford at 6:30 am and flew to Chicago. I attended a conference of PSC Partners Seeking a Cure, a group dedicated to support and education about primary sclerosing cholangitis, a liver disease. I gave an overview of disabilities law to the whole group, and also had lunch with a bunch of families with kids with PSC, so I had a chance to listen and learn about what an inspiring, supportive group this is. I was thoroughly energized by them.

Which was good, because I needed energy!

At 4 pm, I sprinted to the airport and flew on to Seattle. I landed there at about 8:15 pm Pacific Time (already 11:15 pm according to my body), dropped my suitcase at the hotel, and went to a benefit concert Pearl Jam's Mike McCready played for CCFA Camp Oasis and Advocacy for Patients. Camp Oasis is for kids with IBD, so they can go to camp with other kids who "get it" rather than having to worry about how "healthy" kids would respond to their illness. In addition to the concert, Pearl Jam fan-based nonprofit Wishlist Foundation did a pre-show party and auction, as well as a raffle of some great swag, including a chance to play onstage with Mike -- someone's dream of a lifetime (go Jeremy!). And Mike's friend Chris Adams worked with everybody to make sure everything went well (love ya, Chris).

I arrived at the concert just after Mike's Hendrix cover band, Shadow '86, had started playing, and had my first chance to hear Mike sing -- something he's been working hard on for awhile -- and he was GREAT!!! I was so impressed. He ended with a Hendix-inspired Star Spangled Banner -- practice for when he plays it at the Mariner's game later this week!

The second band was Loaded, fronted by Guns 'n Roses Duff McKagan. They played an awesome set. I strongly recommend these guys if they come to your town.

Finally, Mike played a long, wonderful set with his old band, Flight to Mars. They were really great, and it was such a fun set. Jeremy, who had won the right to play onstage, did a great job, and there were some surprise back-up singers who lent good sound to Skynnard's Tuesday's Gone with the Wind. Very cool.

Then we cleared all our stuff out of there and Mike dropped me off at my hotel for the night. It was a 26 hour day, two plane flights, a speech, and a long rock concert, and I'm no spring chicken!

It was also really nice that friends from the IBD Quilt Project and Get Your Guts in Gear came to see me and hear the great music, as did our newest Advocacy for Patients board member, Kris McFalls, the patient advocate for IG Living Magazine. I was so happy to see everyone, even though the volume of the music made it pretty impossible to talk -- or, I should say, to hear!

Anyway, we all slept in on Sunday. I hooked up with Laura and Eric from Wishlist for more hugs before they left for the airport, and then I had an early dinner with Mike and family -- wonderfully kind and generous people.

Monday was spent traveling home -- all day! The woman on the plane next to me from Seattle to Chicago decided she needed a banana, and that turned my stomach. I will spare you the details. Suffice it to say that my esophagus is still burning from all the puking. But I made it home by 8:30 pm on Monday night, and then spent most of yesterday recovering, although somehow I got caught up on emails and phone messages. And today, I'm back to the grind, although another day in bed wouldn't be a bad thing, considering how I'm feeling.

If I'd thought about how hard this was going to be to pull off, I never would have gone. But once in awhile, even I have to act without thinking first, and this is a great example of why. I would have hated to miss this fun. It was truly wonderful, and I'm not sorry I went in the least bit.

Sometimes you just have to go for the WOW in life. And this week-end definitely was a WOW!!! Jennifer

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