The day the Olympics began, before the Opening Ceremony fireworks exploded, before the giant torch lit up the night sky and before Michael Phelps began blowing up world records right and left, 6,800 miles away, Emily Long sat down at her laptop and filed her dispatch.
FRIDAY, AUGUST 08, 2008
Hey Every1!! I can't believe 8-8-08 is FINALLY here!! I'm SO EXCITED!! I can't wait to see the swimming plus the other sports!!… So probably I'm going to drive you all crazy with all this EXCITEMENT!! The headaches are ok......... not great but not horrible!!
Over the week, 14-year-old Emily would nearly wear out the exclamation point on her keyboard with her daily reports. She tried to keep family and friends abreast of all the breaking Olympic news and highlights, particularly those involving her favorite swimmers - Phelps, Kate Ziegler and Katie Hoff - many of whom had befriended Emily over the previous year.
Usually, Emily's blog is a channel for friends, family, coaches and teachers to stay abreast on her medical condition. But this week, it's all Olympics, all the time, charting the exploits of her heroes and her friends.
"Every swim is amazing to me, no matter who won first or last," Emily says. "I think the USA swimmers are awesome."
Emily was born with intraventricular arachnoid cysts that caused hydrocephalus. She has lived her entire life with immovable cysts in her brain, which have caused abnormal resorption of fluid in her brain. She had her first surgery when she was just 6 weeks old. She's since had 53 more, the most recent in May. Emily has four shunts in her head - two of which are currently active - that regularly drain the fluid.
Yet all she can talk about is Phelps, Ziegler and the U.S. Swim team.
"What she's had to experience, to undergo with all of those surgeries, she still has such a great attitude," says Debbie Phelps, mother of Michael, who this weekend will try for his seventh and eighth gold medals at the Summer Games, which would set a record for the most won at a single Olympics. "She is just an outstanding, dynamic little girl."
Since before Emily was born, Dr. Ben Carson, the noted Johns Hopkins neurosurgeon, has been treating her. Her family has been in and out of Johns Hopkins Children's Center ever since.
"It's been one thing after another for about 14 years now," says Carson. "She's a very complex critter."
As for her long-term prognosis, Carson says it's difficult to predict. Very little about Emily's condition has been conventional and even less has been predictable. "Nothing is guaranteed except that we're going to the do best we can for her," he says.
The family had been referred several times to the Make-a-Wish Foundation. When she was younger, Emily especially wanted to meet Belle from Beauty and the Beast. She was always too sick, though.
Fortunately, by time she was healthy enough for a wish, it'd turn out to be much more meaningful than hugging a Disney princess.
When Emily was 7, she followed her brother's footsteps to the swimming pool. While Emily looks about the same as her peers, her parents had hoped to improve her motor skills, which had been affected by the cysts.
"She was excited about the water from the day she stepped in it," said her mother, Debbie Long.
Emily swam with UMBC's Retriever Aquatic Club, which at the time was coached by Tom Himes, who happened to have been the first coach of Phelps, Emily's favorite male swimmer.
"She literally cannot wait to get to the pool every day," says Himes. "There were times when she had no reason to be there - too sick or something - but there she was. She has that special passion that you don't always see. To a certain extent, if she had all the physical attributes of Michael, she'd be another Michael Phelps."
It was difficult for anyone to keep Emily out of the water. In fact, it was only her failing health that ever really caused her to stay away.
"A lot of times, she'd be in hospital for weeks on end," Carson says, "and she'd say, 'I know I have to go through this, but please have me ready for my next meet. I have to be there. This is how much time you have. '"
After a particularly rough stretch in the spring of 2007, the Make-a-Wish Foundation granted Emily's wish: She would watch the U.S. Swimming national team compete at the world championships in Melbourne, Australia.
Suddenly, Emily was far from her Bowie home, halfway around the world, watching races next to Debbie Phelps. Hanging with Ian Crocker. Chatting with Natalie Coughlin. And cheering on Ziegler, a distance swimmer from Great Falls, Va., Emily's favorite female swimmer.
After Ziegler had a rough 400-meter freestyle race in Australia, Emily gave her a necklace with a small gold pendant. "I got this for you," Emily told Ziegler. "It reminds me of a gold medal. And all of your swims are like gold to me."
"That kind of turned my whole Worlds around," Ziegler says today.
Ziegler won both the 800 freestyle and the 1,500 freestyle. After the second race, she gave Emily the stuffed penguin that was given to all the winners.
For Emily, that probably would've been enough.
But Phelps also set an important world record, breaking Ian Thorpe's mark in the 200 freestyle.
She recently posted on her blog: "those cute little stuffed animals keep me going when I'm having a rough time. to think they gave them to me!!!"
Emily also visited the Olympic Trials this year in Omaha, Neb. On the final day, Ziegler and Phelps hung out at a restaurant with Emily, snapping photos and chatting. Emily and Phelps got along like old pals.
"All of Michael's talent, the gold medals, the world records, it's all just amazing," says Debbie Phelps. "But Michael is very giving and loving, especially to kids. To me, that's one of his greatest qualities and attributes."
This week, Emily watches each race - "I cheer, even though I'm nervous," she says - and scribbles the winning times on a sheet of paper. She'll often watch the races a few more times before turning on her computer and typing her report for her large circle of supporters and friends.
"She's their reporter," says her mother.
And though Emily doesn't seem to realize it, she's affecting these Games from afar. After Ziegler struggled in the 400 freestyle early in the week, an e-mail popped up from Emily with some encouraging words: "Sometimes our bodies just don't work as perfectly as we want them to."
Ziegler took the words to heart. She had to, because Emily knew exactly what she was talking about. For Ziegler, it provided a moment of pause, to realize how fortunate she is to even be competing at the Games.
"I don't think she necessarily realizes how much of a help she is to me," says Ziegler, "and maybe there's times where I don't realize how much I help her."
That's precisely right. Even when Emily's heroes struggle, they somehow serve as an inspiration. There's a maturity and a wisdom to Emily that pays no attention to the cysts.
"Seeing them struggle gives Emily more hope," Debbie Long said. "The world is not painted perfect, not even for the most elite athletes in the world. Even for them, their bodies don't work perfect every minute of the day.
"Emily seems to know that your body doesn't work every day. I think she understands that because her body has failed her before. She's impressed by these athletes and what they're capable of doing. I know they might think they're letting down their whole country, but they aren't. They aren't letting down Emily."
Ziegler brought with her to Beijing a gold bracelet that Emily gave her for good luck at the Olympic trials. Ziegler failed to advance to the finals of either of her races at these Olympics. It hurt. But probably not as much as one might think.
"Medals tarnish, ribbons fray," Ziegler says. "Sure, winning gold would be amazing. Just to know that I'm going out there, though, and whatever time I post I'm helping someone live a happier life. That is worth more than any gold medal for me."Copyright © 2015, Los Angeles Times