Tuesday, September 14, 2010

Out of hope...joy

I couldn't resist one more posting on Lil Long's swim.  Yesterday, PHA board member Steve White who represented us at Lil's crossing sent his story on what took place and its meaning. It's wonderfully told and well worth sharing.  Also, last night Lil sent a video (which you can see below) made by her friends Nancy and Lisa.  It's tells the adventure of the Mt. Moriah Choir in getting to the victory celebration.  They surely do know how to party in the Delta!

Dear All,

I had a great trip down south for Lil Battle Long's swim across the Mississippi River to honor her dear friend Nicky Roberts who lost her struggle with PH just three years ago.

Friday I flew from Albany, NY to Memphis and from there drove to Cleveland, Mississippi though fields white with cotton to meet up with Doug Miller, producer for the film crew, and Gareth Gwyn from Actelion. We then headed over to Lil's home in Duncan and enjoyed a great meal in one of the most interesting homes I've ever been in. It was creatively remodeled by Lil and her husband Henry Earl Long. It's almost impossible to describe what they've done with this house. Suffice it to say that the kitchen, which is like something you'd see on the Food Channel, has bright red cabinets and counter-tops made from rare African zebra-wood, and a guest bedroom has a ceiling covered with antique doors that Henry Earl got from an architectural salvage yard. The main thing about their home, though, is its warmth and openness to guests. When you spend a little time with Lil and her wonderful family you get a glimpse into how incredible her support system is and how loving and courageous they all are in facing Lil's PH. But we made it an early evening since Lil wanted to get to bed and get rested up for the next day.

In the morning, all wearing red T-shirts with "Go, Lil, Go!" printed on the front (courtesy of our friends at Actelion) we met up with the film crew and Henry Earl's step-son Justin to make our way over to a boat-launch on the river. We drove up and over a levee and down the other side to the shore of a lake that is parallel to the Mississippi River. There we met up with Lil, Henry Earl, Lil's son Battle, a newswoman from a local TV station, and a friend of Lil's who is a respiratory therapist. Justin and Henry Earl's boats were put into the lake and we headed south to a cut that gave on to the mighty river itself. Where we were is a very remote and wild area teeming with birds of all kinds (egrets, wild turkey, gulls, etc.). As we went through the cut connecting the lake and the river, enormous carp, which were disturbed by the sound of the boat motors, leapt out of the water to a height of two or three feet. Some of the fish were 10 to 15 pounders, according to Justin who grew up on the river and was a superb tour guide.

After checking out a few possible launching sites, we tied up the boats at a sandy stretch and Lil began to prepare for the swim. She was interviewed by Doug for the film first, and then she asked for some private time with me to pray and take communion and have a blessing while the others waited a dozen yards away (we Episcopalians stick together!). Finally Lil put on an inflatable floatation device, flippers, webbed gloves, and a snorkel. She also had an audio player with some Celtic music that had been some of Nicky's favorite music. She was ready to go, but she had to wait for a tug pushing about 8 or 10 barges loaded with rocks to pass by. After collecting her thoughts for a few minutes, she gently eased into the river and headed for the Arkansas side which was about a quarter of a mile away, straight across.

The two boats stayed near Lil the whole way over. At one point Lil rolled over on her back and began laughing. She told us later that she had felt something slimy -- probably a huge catfish or some other denizen -- slide along her leg and this made her laugh. Lil had predicted that the swim would take about an hour. But 27 minutes after pushing off from the Mississippi shore, she was on the Arkansas side feeling tired but triumphant. She rested in the water for about 5 or 10 minutes before getting into the boat. She said she was amazed she had done it and now knew she could do anything and that PH would not stop her. She said she felt Nicky with her all the way, as well as the presence of God, and my daughter Christen, and Doug's mother (who also died of PH seven years ago). It was a powerfully emotional moment for all of us who were there with most of us shedding a tear or two.

On the way back to the boat launch we estimated that, given the current that carried her down the river, she swam a total of about half a mile. Pretty good time for someone with PH! As we came out of the cut and into the lake, a giant carp leapt out of the water and smacked Gareth on the left shoulder hard. Justin estimated it was about a 10-pounder and we were going maybe 30 miles an hour. The fish left a slimy, smelly impression on the left sleeve of Gareth's T-shirt that I thought looked rather like Homer Simpson. We all advised Gareth that he might want to change his shirt before going to the airport.

This was followed by a party with the best fried catfish I've ever had, a wonderful church choir of young people from Jackson, MS, a local flamboyant antique blues singer who worked the crowd, and lots of Lil's family and friends. It was a very happy occasion and there was much pride in Lil's accomplishment. Lil glowed and, with a glass of champagne in one hand, gave a hug around the neck to one and all and accepted everyone’s congratulations.

What a day of honoring Nicky and all who have, and continue to struggle with PH! Lil’s swim was an act of courage and determination that shows the value of exercise for PH patients as well as the bonds of love and hope that unite everyone in the PH community. I'm confident that Lil's story in what I'm sure will be a superb film will be inspiring to many people who fight this wicked disease for along time to come.

I am full of gratitude for the opportunity to be a small part of this incredible event.

Steve White

...and as a bonus, here is the Mt. Moriah Choir performing at the celebration!

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