BEIJING—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.