Tutus Rock

Published: March 27, 2014 ~ 2

By Laura Edwards

Before Batten disease stole her vision, Taylor ruled the stage. My little sister, a princess to the core, wore sparkly pink tutus and tights morning, noon and night.

As the years went on, the monster in her genes robbed her of basic gifts, like motor coordination, speech and sight. But at the start of her fifth grade year, Taylor traded her ballet flats for running shoes and joined her school’s Girls on the Run team. Though blind, she ran two 5K races with the help of a sighted guide that year.

That’s why I ran Charlotte’s Thunder Road Half Marathon blindfolded in November 2013. And that’s why, a few weeks later, I ran the Huntersville Half Marathon in a purple tutu. I may have looked ridiculous, but let’s be honest – few people look great when they run. Considering that it rained for the majority of the race, and the tutu didn’t possess moisture-wicking properties, I may have given up a few minutes on my time. But despite the sopping wet tutu, I beat my previous PR by 10 minutes and most of the people in my age group, too. I may have looked like a drowned ostrich, but ostriches are pretty fast.

The folks at SELF Magazine made headlines today, and not the good kind. A San Diego runner fighting brain cancer was used and abused by the magazine, essentially tricked into providing a photo of herself racing in a tutu for a column that made fun of the fitness fashion trend. The runner, Monika Allen, made the tutu herself; her company, Glam Runner, makes tutus and donates the proceeds to Girls on the Run, the organization that helped give my sister some of the happiest damn memories of her life.

It was a low blow, and the “apology” was pathetic. Tutus aren’t really my speed. I ran a half marathon in an exceptionally loud tutu not for myself, but for my little sister. She’s a princess at heart who used to run 5K races but can’t anymore, because she has a crappy brain disease that made her go blind, stole her ability to run and a whole bunch of other things and will eventually kill her.

Note to SELF: you never know what battle someone else is facing. So don’t judge.

How to Fly

Published: March 23, 2014 ~ 4

By Laura Edwards

I’ve been an athlete for 20-plus years and still have blue ribbons won for the 50-yard dash at my elementary school’s field day (my house may look spotless at first glance, but behind the closet doors, I’m really a packrat). But I didn’t enter my first road race until the year I turned 24, a few months after Taylor’s Batten disease diagnosis.

As has been my track record of late, I did (almost) everything wrong leading up to this morning’s Charlotte 10 Miler. I strained my calf on a long run on the first Sunday in March, and the injury put me out of commission for almost two weeks. I eased back into running (the only thing I did right), and my longest run leading up to the race was a whopping three miles at a 10:00/mile pace. I got a nasty head cold this week and popped Mucinex D like candy all weekend. I went to bed after 1 a.m. the night before the race and grabbed a solid four hours of sleep before my alarm sounded this morning.

But when I got to the race parking lot, I felt good. The weather couldn’t have been better. The forecast called for rain by mid-morning, but at that early hour, the sky was streaked with fire as the sun stretched and yawned low in the sky. I followed my friend Andrew’s advice to take a few warmup laps in an attempt to break my string of slow starts.

I shot out of the starting area, and for the first mile, I kept up with the race leaders. I felt bad when Théoden Janes, the Charlotte Observer’s pop culture reporter who also writes about running and has a popular Facebook page called Run with Théoden, passed me, but then I reminded myself that he qualified for Boston and has a personal running coach. I kept a steady pace; after three miles, I realized I’d just broken my PR for the 5K distance – and I still had a lot of gas left in the tank.

Andrew, who guided me to the finish line when I ran Charlotte’s Thunder Road Half Marathon blindfolded for Taylor in November, was waiting with a cup of water and a dose of encouragement at the mile four water stop. I coasted through and kept going, my pace still holding steady.

It wasn’t until mile eight that I lost time. I entered a neighborhood with two consecutive hills that, today at least, made the Tar Heel 10 Miler’s famous Laurel Hill feel like a molehill. My legs and my lungs burned. As I rounded the first corner and came to the second hill, I said aloud, “You. Will. Not. Walk.” I envisioned my sister, at home, fighting with every bone in her body. And I didn’t walk.

Charlotte 10 Miler finish

Andrew found me on the last mile. He reminded me how close I was to breaking my PR, but I already knew. I smiled at my friend and guide, and I kept running.

That’s when my little sister jogged up beside me on legs that, once upon a time, ran two 5Ks. She turned to me and said, in a voice lost to Batten disease, “You remember how to fly.”

Less than half a mile later, I sprinted into the final stretch and across the finish line for my best-ever 10-miler time by two full minutes: 1:17:49 (7:46/mile pace), good for 60th overall and second in my age group. Robbed of my regular aerobic capacity by all of the junk in my system from the head cold, I gasped for air as I bent to my knees just past the finish line. My husband and my dad, there to watch me finish, asked if I was okay.

“I’m okay,” I said. “I’ve just never run that fast before.”

As I limped out of the finish area with my first race medal of 2014 around my neck, I thought for a second, maybe that’s as fast as I can go.

end of Charlotte 10 Miler

But I know it’s not. And I know that when I lace up my shoes for the next race in less than a month, I’ll try to beat myself again.

Some days, when our fight against Batten disease gets really tough, I think that maybe we’ll get to a point where we’ve done all we can do.

But deep in my soul, I know that point doesn’t exist.

Because regardless of how our story ends, there will ALWAYS be another Taylor. There will always be another family like ours. So no matter how many hills I have to climb, no matter how much my muscles ache and my lungs burn, and even if I have to finish this race alone, I’ll be damned if I’m going to come this far only to stop short of the finish line.

Time Machine

Published: March 22, 2014 ~ 4

By Laura Edwards

Tomorrow morning, I’ll run the Charlotte 10 Miler in Taylor’s honor. Always afraid I’ll forget something important, I took a few minutes to lay everything out on my bed this afternoon.

Tomorrow is March 23, the fourth day of spring. But the date printed on my race bib is 2/22/2014. That’s because a good bit of the 10-mile course is on a greenway, and the greenway flooded in February, forcing organizers to postpone Charlotte’s only 10-mile race.

In any case, I’m around for the redo, and at 7:45 a.m., I’ll set out to improve my time for the third straight year (in 2013, I finished 27th overall with a time of 1:22, two minutes off my PR). I’ll try to do it in the shirt and compression sleeve I wore when I ran 13.1 miles in the dark for my sister at Charlotte’s Thunder Road Half Marathon in November. If it’s raining, I may lace up the shoes that carried me to that memorable finish, though the soles have reached “retired” status.

One funny side effect of the postponement is that I celebrated a birthday in the month that transpired since the original race date, meaning my actual age doesn’t match the age listed in official race records. I smiled when I noticed that small detail today; if anything, it just adds to the whole time machine feel of my first race of 2014.

I know a lot of people who’d give their right arm for a time machine. I have a lot of things to love about the present, but I’d be lying if I said I wouldn’t give just about anything if Taylor and I could just be sisters for a single day. She’ll be 16 in August. I should be giving her advice about boys, helping her with homework, cheering for her at games, etc. and inviting her to spend the night with me. When John and I bought our house, I decorated the upstairs guest room for my little sister. She was diagnosed with Batten disease less than five months later, and though we had a few sleepovers in the early days, she developed a fear of sleeping alone because of her declining vision. Taylor’s never spent a single night in that room.

I envy the women who have “good” relationships with their sisters. I know Taylor loves me, and I’d walk through fire for her. But suffice it to say that our sisterhood hasn’t materialized in quite the way I imagined. And these days, I don’t even pine for the “big” things so much anymore – all of the things Taylor deserves that Batten disease stole from her. These days, I’d give anything to have a conversation with my little sister. We’ll never have that again.

Tomorrow morning, it’ll be chilly and possibly wet when I put on my purple duds, lace up my shoes and run a 10-mile race for Taylor. I wish she could be at the finish line when I cross, but I know she can’t. And that’s exactly why I’ll never, ever stop running for her.

The End of the Race, but Not the End of the Story

Published: February 2, 2014 ~ 7

By Laura Edwards

Nine days before the race of my life, I received a short email message from a writer asking me if I could do a short interview for a possible feature on my attempt to run Charlotte’s Thunder Road Half Marathon blindfolded in support of my sister, Taylor, and the fight against rare diseases. Between final training runs and race preparations that weekend, I did an interview with Gail Kislevitz of the New York Road Runners.

Runner's World cover

No emotions could match those I felt the day of the race on Saturday, Nov. 16, as I ran 13.1 miles in the dark, led only by my guide, Andrew Swistak, and the courage of my sister, whose presence I felt throughout the morning even though her declining health didn’t allow her to attend. But when I received another email from Kislevitz early on the morning of Tuesday, Nov. 19, informing me that our story had been selected for publication, I jumped so high in the air that my head almost hit the ceiling of my closet.

Taylor’s story is moving, and Taylor’s Tale has been lucky to achieve a great deal of local and statewide media coverage since our founding in 2007. The Thunder Road story, in particular, raised our profile and helped us reach a whole new audience, garnering multiple TV, print and online stories and even the cover story in a statewide magazine. But the news that Runner’s World, the world’s largest running magazine, had chosen our story for its What it Takes column made my heart race.

The March issue hit newsstands on Friday. I subscribe to Runner’s World, but I raced to the grocery store to purchase a few additional copies. We didn’t get the cover, a full-page story or even a full column, but seeing our names and a phrase I hate with every bone in my body – “Batten disease” – within its pages means everything to me. We may have only gotten a paragraph, but thanks to that paragraph, thousands of people who would have otherwise never heard of Batten disease now know the name of the monster stealing my sister away from us. Maybe, just maybe, they’ll Google it, learn the depths of its horrors and be compelled to help kids like Taylor – a kid who, once upon a time, loved to run – just like them.

And that’s the only reason I’m running this race.

Note: Our story appears in the “What it Takes” column on page 20 of the March issue of Runner’s World magazine. Thanks to the Runner’s World team for their support of our fight against rare diseases!

The Magic Tutu

Published: December 15, 2013 ~ 2

By Laura Edwards

I don’t normally run long races back-to-back, and after pouring all of my physical and emotional energy into running Charlotte’s Thunder Road Half Marathon blindfolded for the fight against Batten disease on Nov. 16, I planned on taking some time off before starting my 2014 race calendar with a 10-miler in February. But a couple of months ago, I won a free entry to the Huntersville Half Marathon from Théoden Janes, the Charlotte Observer’s pop culture writer. The race takes place just four weeks after Thunder Road, but when I won the entry, I thought, why not? It’d be a nice cool-down; a no-pressure way to end a great year for running.

I took the no-pressure attitude to the extreme. I dropped my training mileage to the bare minimum (12 miles/week). I never looked at the course map; I didn’t know a thing about the grade/elevation, turns or, well, anything. I ate junk food the week of the race. I stayed out late for a company Christmas party on Thursday night and got less than five hours of sleep on Friday night.

And then there was the tutu.

When I approached the Taylor’s Tale cheer station located at the final turn on the Thunder Road course with my sighted guide and the gene therapy expert from UNC in November, I heard the whoops and screams of about 100 cheerleaders, including 70-plus teenagers from Playing from Others, an incredible organization that is supporting Taylor’s Tale this year. After crossing the finish line a short time later, I learned that those teens, in a spontaneous, joint burst of inspiration, took off after us in their purple tutus, t-shirts, sparkle and glitter to surround us in the finish area, like a scene from a Disney movie.

When I had lunch with some of our friends from Playing for Others a couple of weeks ago, one of them, Madison Lynch, still had her tutu in her car. In a moment of enthusiasm/insanity, I promised them all I’d wear the tutu in the Huntersville Half Marathon for Taylor.

And then there was the rain.

I watched the forecast all this past week, and it only got worse. By Friday, the forecast looked ominous: 40 degrees at the start of the race, with a 100 percent chance of rain. I told one of my friends at the office that I’d probably look – and feel – like a drowned ostrich in that tutu.

But I don’t go back on my word. So at 6:30 yesterday morning, I put on my Coldgear tights and top-of-the-line Feetures socks, a base layer shirt and Team Taylor’s Tale shirt, the 4TAYLOR sleeves given to me by my sighted guide and his wife, and a hat to keep the rain out of my eyes. Last of all, I laced up the Brooks shoes that are overdue to be replaced yet carried me to the greatest sports moment of my life at Thunder Road four weeks earlier, and pushed them through a purple tutu that is most definitely not moisture-wicking, water-repellent or aerodynamic.

That tutu wasn’t designed for running, but it was a rock star at building awareness for Batten disease. During the race, I lost count of all of the water station volunteers and spectators who yelled, “Love the tutu!” or something similar when I ran by them. “Visit taylorstale.org to learn why I’m wearing it!” I yelled back. One mother watching the race with her daughter actually nodded and started typing something into her phone almost instantaneously. It felt good to imagine – to hope – she went to our site.

Most of the course snaked through neighborhoods decorated for Christmas, a change from the Thunder Road course that starts and finishes in center city Charlotte. It drizzled for most of the 13.1 miles, and for a short period, the rain poured from the front brim of my hat. But my legs felt strong, and I powered through the rolling hills. I got an extra burst of energy when I passed the 1:50 pace group and realized I didn’t feel winded at all (my personal record, or PR, for the half was 1:57).

Even with the rain, the end came too quickly. When I approached the 13-mile marker, I kicked it into high gear for my customary sprint to the finish line. I wish someone had a video of me sprinting to the finish in that tutu! And when I ran across the timing mats, the clock read 1:47:30:73. I’d beaten my previous PR by 10 minutes. In the rain. On junk food. On no sleep. On a course I didn’t know anything about. In a tutu.

I didn’t think the tutu would survive the day, but it’s not going anywhere. It will forever be known as the magic tutu. Because I’m one of those people who refuses to throw away the shoes that carried me to a great finish, even if I can stick my fingers through the soles.

I don’t know if it’s really a magic tutu. But I do know this: every time my muscles scream and my lungs burn, every time I want to walk to the top of a hill, I think about my sister; I think about how she ran the Thunder Road 5K from start to finish, and I think about how she faces the world’s worst disease with courage and grace. I think about those things, and the pain in my legs melts away, and my lungs fill with air, and I feel as if I could sprint to the top of the world’s steepest hill.

I know that yesterday, I ran a half marathon 44 minutes faster than I ran my first half marathon in 2009, and that I’ve gotten faster each year. I also know that as I’ve gotten faster on the wings of my sister’s courage, my sister has gotten sicker. I know that I will never, ever stop running for her. I know that I must never stop fighting until we cross the ultimate finish line for kids like Taylor.

The Beacon

Published: November 26, 2013 ~ 2

By Laura Edwards

A cold rain is falling from a black sky. The slick roads are plastered with wet leaves that burned with the fiery crimson, yellow and orange of a North Carolina autumn for just a short while before an angry wind whisked them from their branches.

I’m not ready for winter, but it’s here, ugly and mad.

One cold, bright day last winter, I told my mom I needed to quit Taylor’s Tale for awhile. Remembering that moment now, I don’t know what I meant, and I’m not sure I ever really did. I uttered those words in the middle of a journey around an indoor track with no shortage of directional signs. But I’d still lost my way.

I never quit Taylor’s Tale, after all. Mom gave me an out, but I didn’t take it. Instead, I picked up my boxing gloves and threw myself back into the ring. I kept writing, and I kept fighting.

Capitol building

I thought Batten disease was killing me, but I was wrong. It’s killing my sister. And I can’t let it get away without a fight.

I stuck around, and since that day on the track, I’ve watched Taylor’s Tale partner with other non-profit organizations to help develop a possible treatment at the UNC Gene Therapy Center, endorse important legislation for the millions of Americans fighting a rare disease, speak to members of Congress and a regulatory committee of the National Institutes of Health (NIH), and tell stories that have reached the far corners of the globe.

Since that day on the track, we’ve earned a lot of victories, but Batten disease has kept winning, too. Last weekend, I ran Charlotte’s Thunder Road Half Marathon blindfolded to honor Taylor, who ran the Thunder Road 5K after losing her vision in 2008, and support the fight against Batten disease and other rare diseases. From the moment I decided to run the race blind, I dreamed of wrapping Taylor in a hug at the finish line. But my sister was in no condition to join us on the morning of the event. Thunder Road marked one of the most incredible experiences of my life, and I’ll never forget it. But hanging my medal around her neck at my house hours later and seeing her face light up was just as special.

In two days, I’ll see Taylor again for the Thanksgiving holiday. Batten disease has a powerful effect on a family; if you’re not careful, it can take everything that’s good in your life and rip it into little pieces. It’s the world’s worst diseases all rolled into one, and it’s been busy with my sister in 2013.

And yet…

I’m thankful.

I’m thankful for my time with my sister, whether it lasts 15 or 50 years. I can’t change the fact that my sister has Batten disease. I can hope that tomorrow won’t come, but I know it will, like the rush of water behind a dam that’s about to burst, or the licking flames of a fire that has already started to spread. And yet, I can recognize the beauty in her smile, the courage in her laugh and the warmth in her hug. I can accept each new day we’re given with Taylor as a day some people aren’t blessed enough to have with the people they love. I can feel encouraged by all of the progress that has been made because my sister’s story is powerful and people are good.

On my dark days, I can feel angry at Batten disease and know it’s okay to hate something that’s stealing somebody I love. I can channel that energy into saving lives. In that way, I’m thankful for the anger, too. My anger is always conquered by my love. And my love for Taylor is a bright beacon, lighting my way.

What are you thankful for?