Monday, June 20, 2011

2,500 Laps

When I pulled my Speedo on tonight, I noticed for the first time that the black material is so worn in places, it's nearly transparent. The only lap-swimming suit I've owned since the summer of '89 (the one year I swam on the neighborhood swim team), its threadbare straps practically begged to be retired. And since my Achilles injury has dragged on for nearly 10 weeks with no end in sight, I took one last look at my raggedy Speedo, sighed and headed to REI, where I purchased a suit that's much too nice for a non-swimmer like me. Then, I headed to the YMCA, where I squeezed in 60 laps for Taylor before the lifeguards kicked me out (which is becoming a trend, ever since I discovered that if I go to the Y after 8:30, I don't have to fight for a lane).

Today, Noah Coughlan reached Florida - the last of eight states stretching across the lower third of the United States of America on his amazing solo run for children with Batten disease. He's passed the 2,000-mile mark and will be near 2,500 when he reaches the Atlantic Ocean in Jacksonville on July 9. I'm a pretty good runner when I'm not broken - I finished in the top 20 percent (men and women) of a strong field in the 10-mile race I ran the week before I blew out my Achilles on the soccer field. But I would have to average 7 miles a day for an entire year - without taking a single day off - to cover the ground Noah will cover in a tad over four months. While I've talked to Noah several times, I haven't talked to his joints...and for all I know, they might hate him right now. Mine sure hate me. But Noah's still running in honor of my little sister and all of the other kids fighting Batten disease. I am in awe of his dedication.

I originally planned to run with Noah over the final two days of his journey - but that won't happen now, not unless I get a new leg in the next two weeks. My profile on Miles to a Miracle, the Taylor's Tale campaign inspired by Taylor's own 5K runs, states that I "run, walk and hike for miracles." I haven't done any of those things since mid-April. So be it. The fire still burns, and though I have a bum leg, I also have a swim cap, goggles and that shiny, new suit. So over the next 132 days - the duration of Noah's journey - I'll aim to swim 2,500 laps for my little sister. If you're able, please consider making a pledge in support of our Miles to a Miracle campaign. Even a penny a lap - just $25 if I achieve my goal - can go a long way toward supporting the search for a cure. I'll post an updated lap total here each week. Thank you in advance for your support!

Send an email to if you're interested in making a pledge!

Thursday, June 16, 2011


I'm all about anniversaries. And on Tuesday, I celebrated one: the two-month anniversary of a sideline sprint that ended with me crawling off the soccer field, my left Achilles tendon partially torn like a piece of frayed rope. 61 days later, my Achilles spent its "anniversary" feeling just about as worthless as it did the moment it tore.

These unfortunate circumstances are partly my fault, I know. There's no use in denying it - I'm a bad patient. After all, my doctor did tell me to wear my walking boot at all times unless I'm fully engaged in my usual fetal position in bed for a too-short night's sleep. But the boot's hot. It's a pain to take on and off. It's not the best summer fashion statement - I keep thinking I should decorate it with miniature leis and little pink umbrellas and other fun things that make me think of cute sandals and tropical islands and activities best done bootless. And, it's not water sports-friendly. I spent this past weekend at my aunt and uncle's house on beautiful Smith Mountain Lake in Virginia. Getting from the house to their dock in a beautiful, quiet little cove with a full view of the mountain itself requires navigating 86 unevenly-sized wooden steps. My uncle, a surgeon, was horrified at my lack of compliance with doctor's orders - first when I attempted to come down those steps barefooted and crutch-less and then later, when I came down the steps a second time, still barefooted but this time on crutches, only to ditch the crutches as soon as I reached the bottom step.

One reason I'm a bad patient is that I am extremely prone to cabin fever. I cherish those fleeting moments in which I have nothing to do and can simply sit still and breathe, but when I'm forced to sit still, it drives me crazy.

The second reason I'm a bad patient is that I'm just plain stubborn. Sometimes, when instructions don't suit me, and I'm the only one who stands to lose, I just don't follow them.

I'm stubborn about Batten disease. Some people have asked me, and my mom, why we're still fighting this damn monster. It's winning the fight right now and has been all along, so why are we still throwing punches?

I'll tell you why we're still fighting. We haven't been knocked out yet, that's why. We may have bloody lips and swollen eyes and busted noses, but we're still standing, and we've managed to get in a lot of good licks on Batten, too. There are still people out there who haven't heard Taylor's story. There are still people out there who, given the opportunity, would be inspired to fight beside us - for one battle or maybe the whole war. I learned that this spring; I spoke publicly on behalf of Taylor's Tale on six different occasions, and every time, at least one perfect stranger came up to me afterward wiping away "I want to help" tears. And, most importantly, there's still a lot of kids who need us to keep fighting. We won't find the answer in time to save all of them - maybe not even my own sister. I know that. Believe me, I've known it for a long time.

But just as my family's still standing, my sister's still smiling. When Taylor was little, we called her "spunky," which really meant she was stubborn as hell but so damn cute that "spunky" just fit better.

Keep throwing those punches, Batten. Eventually, the fight will end, and you'll be lying on the ground, and we'll be standing. We'll be covered in blood, and we'll struggle to keep our balance, but we'll still be on our own two feet. Because we're too spunky to take "no cure" for an answer.

In spunk we trust.

Friday, June 3, 2011

Batten Disease Awareness Weekend

How did you first hear about Batten disease?

Nearly five years ago, I was sitting at my desk on a Charlotte hospital campus when I heard that awful phrase for the first time. I was writing a press release when my mother called to tell me through tears that a geneticist had just told her and my dad that my seven-year-old little sister was going to die.

I wish I'd never heard of Batten disease. I wish I could wrap my brain around the idea that one single defective gene out of the estimated 20,000-30,000 we humans have can cause all of the terrible things that are a part of Batten disease. But a large part of me is glad that I can't always wrap my brain around the truth that all of those terrible things are happening or will happen to my little sister, now 12. Because it's during those moments of truth that I'm engulfed by feelings of helplessness and despair.

I'm proud of all that Taylor's Tale has done to advance the search for a cure. Nearly $300,000 and many stories later, we're much closer than we were on the day of that fateful phone call. More than that, however, I'm proud of my family for how they've faced this monster each day with nothing but hate for it and love for each other. And most of all, I'm proud of my sister for never losing her beautiful spirit - even in those moments when the twisted demon of a disease is at its strongest.

Today marks the beginning of Batten Disease Awareness Weekend, so I have a small favor to ask: over the next few days, please make a point to share Taylor's Tale with everyone you know. Scientists are very close to finding an answer for infantile Batten disease, but that answer will never reach the children who so desperately need it unless more people know about it. Batten disease is anonymous in the eyes of much of the world, and that has to change. Then, and only then, will we witness a miracle worthy of the courage that lives in each and every one of these children.