My Turn to Coach

Published: July 11, 2013 ~ 2

By Laura Edwards

My mom, Sharon King, walks to stay in shape. She’s not a runner and says she’ll never be a runner.

Last year, we walked the Run the Creek 5K together in support of the Batten Disease Support & Research Association. When the finish line came into view, without warning, Mom gave me a gentle push and goaded me into a two-woman race. Then, she broke into a sprint and cackled as she crossed the finish line a split second ahead of her runner daughter.

Mom hasn’t let me forget that she beat me that day. But she’s never run a 5K from start to finish – something my sister Taylor, who’s blind and suffers from Batten disease, did twice.

On Nov. 16, I’ll run Charlotte’s Thunder Road Half Marathon blindfolded to honor the five-year anniversary of Taylor’s first 5K. And about 30 minutes after my sighted guide, Andrew Swistak, and I each grasp an end of a three-foot bungee cord and I pull the blindfold over my eyes to begin my first-ever blindfolded half marathon, Mom will join a mass of people for the start of the event’s 5K.

Mom says she’s not ready to run that 5K today. But Andrew’s done a great job coaching me to run in a dark world, and now it’s my turn to coach. Over the next four months, I’ll alternate between meeting Andrew for blindfolded runs on the Charlotte streets and meeting Mom at the Y for 5K training. We’ll start by alternating between running two minutes, then walking two minutes. We’ll work up to a mile, then two, then three.

By race day, Mom will be a force on that 3.1-mile race course. She may not believe in her ability to run a 5K from start to finish, but I do. Because she told me today that she’ll run it for Taylor. And I’ve never known my mom to fail at anything she said she would do.

The Thunder Road Marathon, Thunder Road Half Marathon and 5K have plenty of room for other Taylor’s Tale supporters. If you’re interested in running to honor Taylor and support Taylor’s Tale, the 501(c)3 non-profit organization we founded to fight Batten disease and other rare diseases, please contact us.

Just Keep Running

Published: June 20, 2013 ~ 0

By Laura Edwards

Last night, I broke out a makeshift blindfold for training run number four with my sighted guide, Andrew Swistak. I ran with my eyes closed for our first three runs, but even squeezing them shut didn’t block out all of the light or provide an experience of total blindness. At 10:28 p.m., Andrew and I took off from my mailbox; after a few blindfold adjustments on the run, we found our stride.

Andrew doesn’t tell me where we are on our runs, though if I guess correctly (which is rare), he’ll tell me. But I run with a Garmin Forerunner GPS watch, so afterward, I can connect it to my laptop and get a map of our route. When Andrew drops me off at my house at the end of the night, I feel like I have a pretty good idea of where we went. But it’s obvious from the Garmin maps that my internal compass is all out of whack. Last night, I thought we made it halfway across our neighborhood, which has multiple sections and over 800 houses. But the Garmin map traced a route that covered just eight short streets with lots of cul-de-sacs (great for practicing turns) in a tight area within half a mile of my house. All I can say is, it’s a good thing Andrew signed up to lead me to the finish line of the Thunder Road Half Marathon on Nov. 16.

We covered 3.79 miles in 40:48, so we lost some speed to the blindfold and all of those switchbacks. My ankle’s still a little balky from that first night, too, but it’ll get better. A lot of people say this is a great thing I’m doing for my sister or believe it’s some kind of sacrifice on my part. But I love my training runs with Andrew. I’ve learned a lot about myself as a runner, and I’ve learned more than I ever imagined I could learn about my sister’s dark world. And I can throw my blindfold in the laundry with the rest of my running duds at the end of the night. I can drink in the beauty of another day when the sun rises the morning after a run. I’m not where I want to be for this run on Nov. 16, but I’m sticking with it. I know what Taylor would do if she hit a bump in the road.

She’d just keep running.

I will run the Thunder Road Half Marathon blindfolded to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

Lights Out

Published: June 19, 2013 ~ 0

By Laura Edwards

Since announcing my intent to run Charlotte’s Thunder Road Half Marathon blindfolded on Nov. 16, I’ve run with my sighted guide, Andrew Swistak, three times. The first time, I started with my eyes open to get a feel for the three-foot bungee cord that will be my lifeline throughout the 13.1-mile race. After about 10 minutes, I closed my eyes. The last two times, I ran with my eyes closed, but even the pale moonlight and occasional street light reminded me that, unlike my little sister, Taylor, I’m not really blind.

Andrew doesn’t know it yet, but I broke out a makeshift blindfold for training run number four. And when he picks me up at the foot of my driveway later tonight, I’ll be ready!

Picking Up Speed

Published: June 15, 2013 ~ 3

By Laura Edwards

On Thursday evening, I sat by my living room window and blogged about blind run number two as wind and rain pelted the glass. Between 8 and 9 p.m., the deluge ended, and a purplish, backlit sky cloaked the drenched tree canopies and rooftops of my neighborhood. And at 10:09, Andrew picked me up at my mailbox for blind run number three.

As with run number two, I closed my eyes as soon as I took hold of my end of the three-foot bungee cord, my lifeline for these sightless runs designed to prepare me to run the Thunder Road Half Marathon blindfolded on Nov. 16. We turned left at the first intersection and climbed a hill that doesn’t look threatening but always makes me wheeze when I tackle it at the beginning of a run. At the top of the hill, we took another left. At that point, I lost my way.

There is a blinking caution light at the major intersection in our neighborhood, on the main road near the clubhouse. When we ran through the intersection, I glimpsed the flashing red light in the black night, even though my eyes were closed, and I knew where we were. I guessed which direction we were headed, because I could feel the grade of the road beneath my feet and know that the road slopes downward away from the clubhouse and back toward my house. Otherwise, I didn’t have the slightest idea where we were throughout the entire 4.56-mile run. To this day, I marvel at how a blind person can navigate this wide world, with all of its dangers and obstacles, without the gift of sight. I’ve lived in my neighborhood for more than seven years; I’ve likely run the equivalent of over 1,000 miles on its streets; and yet if Andrew left me on the side of the road in the middle of one of our runs and told me to make my way home without using my eyes, I couldn’t do it, at least not now.

Despite the fact that my spatial awareness isn’t where I would like it to be, I’ve got plenty of time for that. Plus, we improved our pace by more than 90 seconds, dropping to a 9:42 mile. I’d still like to get to somewhere in the neighborhood of a 9:00 mile for longer distances, based on the fact that with my eyes, I average in the mid-7:00 range for middle distance races (i.e. 10Ks) and low to mid-8:00 range for long-distance races.

Thanks for joining Andrew and me on the road! Read on to learn about our cause and how you can get involved.

Finding My Sea Legs

Published: June 13, 2013 ~ 3

By Laura Edwards

This fall, I’ll run Charlotte’s Thunder Road Half Marathon blindfolded to honor the five-year anniversary of Taylor’s first 5K, raise awareness of Batten disease and support the gene therapy research Taylor’s Tale is co-funding at the University of North Carolina Gene Therapy Center. Last Wednesday, I celebrated National Running Day by going on my first trial run with my sighted guide, Andrew Swistak. Six days and one twisted ankle (mine) later, I felt ready for round two.

Shortly before 10 p.m., I wrapped my bum ankle and met Andrew at my mailbox with our lifeline, a three-foot bungee cord, draped over my shoulders.

Last week, I ran sighted for about 10 minutes to get used to the feeling of being “connected” to someone, and I practiced running with my eyes closed on a middle school track before we headed out into the unmarked, obstacle-riddled world.

This week, I closed my eyes as soon as I felt Andrew’s grip on the other end of that bungee cord. “Let’s go!” I said. I felt none of the roller coaster sensations I experienced when I closed my eyes at the beginning of our first run.

We ran 5.45 miles in 1:01:50 – good for a leisurely pace of 11:21 per mile – including multiple stretches during which we inched our way through a narrow, fenced path, waited for oncoming cars and stopped to step over speed bumps out of respect for my ankle. But we talked throughout the run (I talked about my sister a lot), and my ankle held up like a champ. When Andrew delivered me back to my driveway a few minutes before 11 p.m., long after most of the lights in the windows on my cul-de-sac winked out, I felt the meaning and the magnitude of this run – and our battle for people like Taylor – within every fiber of my sweat-soaked, adrenaline-charged body in the muggy, quiet June night.

Wind, rain and thunder pounded our neighborhood just 30 minutes ago, but all signs point to clear skies by later tonight. If you live close by and happen to be up and about in three or four hours, you might just catch a glimpse of two runners connected by a three-foot bungee cord and a shared mission, cutting through the black night, running toward the light.

I am running the Thunder Road Half Marathon to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

Running in the Dark

Published: June 7, 2013 ~ 1

By Laura Edwards

Two nights ago, I ate an early dinner and waited for several hours to give my grilled cheese, my apple and my neighbors a chance to wind down. Then, I donned a reflective hat, strapped on my Garmin watch and laced up my running shoes. With a bungee cord in hand, I jogged .7 miles under inky, starless skies to the home of my friend, Andrew Swistak, a fellow runner who works at The Fletcher School, where my sister, Taylor, spent six wonderful years.

Just after sunrise on the morning of Nov. 16, I will pull on a blindfold after I lace up my shoes, and Andrew will guide me through the 13.1-mile Thunder Road Half Marathon course on the streets of my hometown of Charlotte. I will attempt to run the entire race without the gift of sight to honor the five-year anniversary of Taylor’s first 5K race, which she ran in conjunction with the 2008 edition of Thunder Road with the help of an older student from Fletcher.

But on this night – National Running Day and my first training run with Andrew – I had no blindfold and, with corrective lenses, perfect vision. Our goal for the evening was to get accustomed to running with the bungee cord.

Early on in our run, though, Andrew took me to the track at the middle school by our neighborhood so we could get used to making turns. And in that protected environment, he asked me if I wanted to give blindness a try, at least for a minute. So I closed my eyes.

Right away, I lost my spatial awareness. The bottom dropped out from under me. My legs turned to Jell-O, and my body felt as though it was not my own. I couldn’t run in a straight line.

But soon, with Andrew’s help, I found my bearings in my dark world. I think we ran five laps around the track. Andrew said that for the most part, I stayed in my lane, even on the turns. I learned to understand the meaning of his tugs on the bungee cord. After a while, we left the track and returned to the neighborhood. I figured out how to make 90-degree turns and 180-degree turns and shift to the side for an oncoming car. At one point, Andrew asked me if my eyes were really closed. And they were.

I thought I’d mastered running blind – albeit much more slowly than I run sighted – until I mistimed a curb jump and twisted my ankle. And in that moment, I remembered that NOTHING about blindness is easy, just as nothing about this race will be easy.

But nothing about Batten disease or rare diseases is easy, and nothing about our fight to save people like Taylor is easy. And a twisted ankle on my first attempt isn’t enough to stop me. An ACE bandage, an ice pack and a couple of days’ rest work wonders for such injuries. And besides, going to work with an ice pack taped to my ankle gave me a natural opening to tell plenty of people about my blindfolded run and the reason behind it, so we spread Taylor’s Tale this week.

And I have a great guide in Andrew Swistak, not to mention a healthy dose of inspiration. There will be no twisted ankles on Nov. 16. We’ll be ready.

Run to the Light

Published: June 1, 2013 ~ 4

By Laura Edwards

My little sister, Taylor, has Batten disease. But that didn’t stop her from signing up for Girls on the Run in the fall of 2008, at the start of her fifth grade year at The Fletcher School. The degenerative disease had already stolen her vision and made it difficult for her to learn new things, but more than anything, Taylor wanted to be a normal kid, and she dared Batten disease to get in her way.

In the afternoons after school, Taylor and her girlfriends met at the track for practice. They developed good fitness habits and learned about teamwork, and they learned to believe in themselves. An upper school student named Mary-Kate stayed after school to practice with the younger girls. When it came time to walk or run around the track, she and Taylor each took one end of a modified jump rope – my sister’s lifeline to a normal experience she desperately craved.

At the last practice of the semester, the girls ran a “practice” 5K around the school track. All of the other girls finished their laps before Taylor and Mary-Kate. Then, as the pair rounded the corner and began their final lap, something magical happened. One by one, everyone on the sideline joined my sister and her sighted guide on the track. Soon, the whole team, plus the coaches and others there to watch the practice, fell into stride with my sister and ran her final lap with her. Girls on the Run Founder Molly Barker happened to be on campus that day to watch practice and meet the girls; she captured this incredible moment in a story for North Carolina’s Endurance Magazine that Gap Inc. also featured in a national campaign last year.

Mom's photos 232

The team’s first REAL race took place on a chilly morning that December at the Jingle Jog 5K, run on the streets of uptown Charlotte in conjunction with the Thunder Road Marathon and Half Marathon. Mary-Kate told us that Taylor stumbled and fell several times on the course, but that after each fall, she pulled herself up, said she could keep running, and did just that. The tethered pair finished the race in just under an hour. They didn’t run fast enough to win an official award, but watching them cross that finish line remains one of the most moving things I’ve ever witnessed. In that moment, I realized that I could never, EVER give up on my sister or my fight against Batten disease. And when the trees bloomed that next spring, I started running for her.

Taylor and Laura after the Jingle Jog 5K in 2008

Taylor was all smiles after the Jingle Jog 5K in 2008.

I’ve run thousands of miles for Taylor since that day at the finish line of the Jingle Jog 5K. I run the Thunder Road Half Marathon every year and run various other races in Charlotte and elsewhere, from 5Ks to 10 milers, and I’ve shaved more than 30 minutes off my half marathon time since my first go at the 13.1 distance in 2009. But I’ve never come close to achieving the kind of feat my sister accomplished, because I’ve run every race with the benefit of my vision. That’s why, to honor the five-year anniversary of her incredible achievement, I plan to run the 2013 Thunder Road Half Marathon blindfolded.

I’ll be tethered to my good friend, Andrew Swistak. Andrew is an avid runner and is also on staff at The Fletcher School, where my sister spent six wonderful years and met many guardian angels. I’m grateful to have Andrew’s support as well as the support of the folks at Run For Your Life, who put on the Thunder Road Marathon and Half Marathon.

Andrew will be my sighted guide at the Thunder Road Half Marathon this November.

I’m in half marathon shape now, but I’m not ready to run 13.1 miles – or even 13.1 feet – without my eyes. Have you ever closed your eyes and tried to move around? It’s not easy to run in the dark. I’m in awe of Taylor’s spatial awareness and courage. Andrew and I have some practicing to do between now and Nov. 16, but we’ll be ready.

I’m doing this mainly to raise awareness of Batten disease, but donations to Taylor’s Tale are always greatly appreciated. Currently, Taylor’s Tale and five partners are supporting gene therapy for infantile and late infantile Batten disease at the University of North Carolina Gene Therapy Center. This promising work could lead to treatments for not only rare diseases such as Batten disease, but also more common diseases like Parkinson’s disease, Alzheimer’s disease and ALS (Lou Gehrig’s disease). If all goes well, this work could be ready to go to clinical trial at UNC in just a few years.

Please share this story to help us build awareness! We’re making incredible progress in the fight to save people like Taylor, but we need the support of friends like you to continue to make a difference.

I have a little bit of my sister in me; I believe, and I dare Batten disease to get in my way!

To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

NEW: Join the Taylor’s Tale team at Thunder Road! Click here to register for the marathon, half marathon or 5K. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” Run for us to help raise awareness on race day. Stay tuned for more details, including special shirts for team members and an informal post-race event!

The Ghost of Laurel Hill

Published: April 21, 2013 ~ 0

By Laura Edwards

Yesterday morning, I woke with the sun to run the Tar Heel 10 Miler in my little sister’s honor for the fourth consecutive year.

I’ve already collected four race medals for Taylor in 2013, but this one is special. The Tar Heel 10 Miler was just the second competitive race I ever entered; I paid the entry fee for the April 2010 edition not long after watching my sister – blind and suffering from a rare, fatal brain disease – jog across the finish line of Charlotte’s Jingle Jog and Girls on the Run 5Ks on one end of a running buddy’s guiding rope and the wings of her own courage.

The Girls on the Run 5K, staged on a sun-drenched, happy day in May 2009, was Taylor’s second race. It was also her last.

Batten disease has stolen so much from Taylor since it crept into her life that the word “unfair” doesn’t begin to do the job. The ability to run is a precious gift that too many of us take for granted, but my sister has lost many more valuable things.

I wish I could make Batten disease go away. I wish I could work magic – go back in time and give Taylor two good copies of the gene that causes Batten disease or even one good copy (which would make her a healthy carrier, like me). But I can’t.

So I share her story in my own words – both spoken and written. I help support the people who have the knowledge to find answers for children like her – people like Steven Gray, PhD of UNC’s Gene Therapy Center, to which Taylor’s Tale awarded a two-year grant earlier this year.

And I run.

On Saturday morning, I followed the brick sidewalks to the football stadium nestled in the trees on the same campus where Dr. Gray works his magic for children like my sister and where I earned my undergraduate degree. I lined up on the track at field level with 3,253 other runners. When the gun sounded at 7:30, I found an opening in the crowd and sprinted through the stadium tunnel and into my 10-mile mind game.

The Tar Heel 10 Miler, set mostly on the gorgeous UNC campus, has some tough sections, but none come close to Laurel Hill, the 200-foot vertical gain over the course of about one mile at the 8.5-mile mark. It’s so difficult that the race organizers place separate timing mats at the bottom and top and hand out special awards just for the hill, and many self-respecting athletes speed-walk it. I’ve never walked, but I’ve come close.

I went into Saturday’s race riding a streak of four straight personal records (PRs) for the half marathon, 10 miler, 5K and 10K that started at the Thunder Road Half Marathon in Charlotte last November. Even though I’d beaten my previous 10 miler record by two minutes just two months earlier at a race in Charlotte, I was determined to beat it again.

But when I reached the first Laurel Hill timing mat, things didn’t look good. My quadriceps burned, and worse – I felt winded. I never get winded. I was riding a 7:45/mile pace through the first 8.5 miles, and it’d taken a lot out of me.

As I started the climb, a voice in my head told me it wasn’t my day. I shouldn’t have eaten the sweet potato fries at Top of the Hill the previous night. I shouldn’t have stayed up till midnight watching the Boston Marathon bombing coverage. As I wheezed my way up those 200 vertical feet, I told myself that WHEN I cross the finish line isn’t important to Taylor (which is true). As my Garmin watch beeped its “Behind Pace” beep, again and again…I began to write my post-Tar Heel 10 Miler blog post in my head. I called it, “I Lost My PR and Found My Truth on Laurel Hill.” I talked to myself over my wheezing. “You can do this,” I breathed. “Forget the stupid PR. Just RUN.”

But then, something happened. My quads loosened. The tightness in my chest melted away. The houses perched at the top of Laurel Hill came into view.

For most of the race, I used my Garmin as my guide. I ran for Taylor, but I ran more for myself.

The moment I understood that is when I left the Ghost of Laurel Hill behind.

It seemed like just moments later that the stadium reappeared. I sprinted into the tunnel, down the track and across the finish line.

When I did, the clock read 1:20:48.

I beat my PR for 10 miles by almost two full minutes and ran the Tar Heel 10 Miler four minutes faster than ever before. I finished in the top 16 percent of 3,253 runners. And when I crossed that finish line, I felt as if I could fly.

Almost like I had wings.

Perspective

Published: April 15, 2013 ~ 0

By Laura Edwards

Before Batten disease robbed my little sister of her ability to run, she joined the Girls on the Run team at her school. With the help of a sighted running buddy, she jogged across the finish line of two local 5Ks.

Taylor ran her last race almost four years ago. Around that same time, I ran my first race in her honor.

My sister can’t run anymore, but I’ve logged thousands of miles for her.

In the past five months, I’ve run four races for Taylor – all different distances – and set four new personal records (PRs). Even after making the first page of results and placing second in my division at Charlotte RaceFest on Saturday, I already had my next race on my mind.

I get stuck on my times, because I’m a perfectionist. I like to challenge myself, both mentally and physically. Whereas some runners hate hills, I say, bring them on. They help me keep things in perspective; my sister’s battle against Batten disease is tougher than any hill I’ll ever face, even if I had two broken legs.

But the senseless acts of hatred that took place at the Boston Marathon this afternoon reminded me that it’s not all about when you cross the finish line.

It’s also about the people you love who staked out a spot along the course to wave handmade signs – the people who will give you a hug at the end, no matter how sweaty you are.

It’s about being healthy enough to finish a race – first or last.

It’s about having this day to stage a race, any race – because each day we receive is a gift from God.

My heart goes out to all those affected by the tragedy in Boston today.

And for as long as my legs will carry me, I’ll keep on running for Taylor.