A Midsummer Morning

Published: July 24, 2013 ~ 0

By Laura Edwards

On July 24, 2006, Mom called me at work to tell me that my then 7-year-old sister, Taylor, has Batten disease – a fatal brain disorder with no known cure.

I stumbled out of my desk chair and toward the stairs, pausing at the open door of our director’s office just long enough to tell her that I had to go home to my family. Then, I raced down the stairs and into the blinding sunshine of the midsummer morning. Outside, the world went about its day. But my insides burned.

When I ran down those stairs, deep inside, I knew I’d come back.

But I’ve never been the same.

Just the Beginning

Published: July 23, 2013 ~ 2

By Laura Edwards

My mom, Sharon King, has never run a race. But on Nov. 16, she’ll be in the 5K field when thousands of runners fill the streets of uptown Charlotte, NC for the Thunder Road Marathon, Half Marathon and 5K.

My mom can do anything she puts her mind to, whether or not she believes it. She doesn’t need my help. But I agreed to coach her to her first 3.1-mile finish and look forward to spending the next few months “on the road” together even as I work toward my own goal of running the half marathon blindfolded in my little sister’s honor.

Mom running

We hit the indoor track for our first training session tonight. I thought we’d average 12-minute-plus miles, but as soon as I hit the “start” button on my Garmin, Mom took off. I don’t like to do anything halfway, but I come by it honest.

We alternated 0.2-mile jogs with two-lap walks on the 1/12-mile track. Toward the end of our run, Mom picked up speed and sharpened her focus, and I fell back to snap a secret photo of her in stride.

We hung it up after a mile; I know the dangers of overdoing exercise as well as anyone and want to warm Mom’s joints up to the idea of this whole running thing. But while we didn’t break any distance records, we got off to a great start. My mom, the non-runner, averaged a 10:28 mile and would have gone faster had she not had me in her ear telling her to slow down on some laps.

I might be able to convince Mom to take it easy on the track, but in the real fight, there’s no room for that. Tomorrow is the seven-year anniversary of Taylor’s Batten disease diagnosis. We’re not slowing down any time soon, and we’ll never, ever give up for kids like my sister. I can’t tell you what the clock will say when we cross our respective finish lines on Nov. 16, but you can count on us to keep fighting.

The Thunder Road Marathon, Thunder Road Half Marathon and Thunder Road 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.

Uneven Ground

Published: July 14, 2013 ~ 0

By Laura Edwards

On Nov. 16, I’ll run the Thunder Road Half Marathon blindfolded to honor my little sister’s fight against Batten disease and raise money for gene therapy at the University of North Carolina. Since early June, I’ve gone on six training runs with my sighted guide, Andrew Swistak, and we made more progress in those first six runs than I ever dreamed possible.

But I haven’t run in darkness since July 1. I’ve been on vacation for a week, and our schedules don’t jive in the coming week. I’ll keep my fitness level; running is part of my life, whether or not I’m training for a race. But I’m not blind, and running without my eyes isn’t like riding a bike without training wheels. It takes practice. So I expect to be a little rusty the next time I pull a blindfold over my eyes and grab hold of my lifeline, a three-foot bungee cord.

I’ve been on the South Carolina coast for the past week, and I laced up my third-string Brooks Glycerin shoes – the ones that have about 800 miles on them – for a couple of runs on the beach. On a late afternoon run at low tide, I thought about my long stretch without any practice runs with Andrew and wondered if I could survive a near-deserted, flat area of the beach with my eyes closed.

I started my experiment on the part of the beach between the powdery dry sand that the waves never reach – ankle-breaking sand – and the damp sand that just hours before had been underwater. I scanned the beach ahead of me for tidal pools and child-dug holes, saw none, said a silent prayer and closed my eyes.

Ten seconds later, the surf filled my tired Brooks shoes. The tide didn’t change; I just veered off course by seven or eight feet in those 10 seconds.

I kept my eyes open the rest of the way.

My self-imposed lesson brought back a memory of a hot summer afternoon at the same beach six years ago. Taylor’s vision had already begun to fail her, but otherwise, she was still the happy, vibrant, healthy kid we knew.

Despite her vision loss, Taylor could run from our chairs to the ocean and back again, low tide or not. She had one hell of an internal compass, and she had no fear.

I’ve never been as fearless as my little sister. Even in that 10-second experiment on the same beach Taylor once ruled in summers that are now only a memory, I feared that I might re-injure my ankle or trip over a child running out of nowhere to chase a seagull or catch a wave.

Like it or not, those smooth, wide beaches are in our past. The path ahead is uneven ground. I’ll need at least an ounce of my sister’s courage to keep going. And whether I run one blindfolded race or one hundred, I’ll need to keep my eyes wide open for the real fight.

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.

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.

Competition

Published: July 2, 2013 ~ 0

By Laura Edwards

4TAYLOR

After an eight-day hiatus from running, I laced up an ankle brace, slung a three-foot bungee cord around my shoulders and knotted a blindfold above my ponytail. At 10:11 p.m., I met my sighted guide, Andrew Swistak, at the foot of my driveway. I said a silent prayer for no errant curbs or potholes and pulled my blindfold down over my eyes. Together, we took off into the black night for blindfolded run number six.

Andrew avoided tight cul-de-sacs out of respect for my ankle, and my ankle brace did its job. We kept it short and slow, logging 2.56 miles in 25:24 – a 9:53/mile pace. I averaged about an 8:53/mile pace at the Thunder Road Half Marathon last fall, and I know we have some work to do if we want to approach my normal speed. It helps to remember that the Thunder Road course will feel like one of those deserted, flat, two-lane highways stretching into infinity from old Western movies compared to the loopy streets of my neighborhood, which require lots of tight turns and verbal direction from Andrew and unquestionably slow us down.

I’d like to become a faster blindfolded runner. But the truth is that I’m only doing this for people like my sister, Taylor, and when it comes to the fight against Batten disease and other rare diseases, I really don’t care who crosses the finish line first. It’s not a competition.

I’ve always thought that running can be a very lonely sport until race day. But the fight I fight for my sister every day is a team effort. I’ve met a lot of teammates since July 24, 2006 – the day we learned that Taylor has infantile Batten disease. I believe in Taylor’s Tale, the non-profit organization I co-founded in her honor, with all of my heart. On race day, I’ll wear the color purple for Taylor’s Tale, as I always do. Just before I lace up my shoes, I’ll use a purple marker to ink the phrase “4 TAYLOR” down my left arm, opposite my Taylor’s Tale wristband. But whether it’s our name or someone else’s in lights the day kids like my sister no longer have to suffer, I don’t care.

Today, we don’t have a treatment for people like Taylor. Doctors still tell families like mine to take their kids home and love them and make happy memories, because there’s nothing else they can do. A treatment is the only finish line I care about. So until we have one, I’ll just keep on 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. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

High Tide

Published: June 26, 2013 ~ 0

By Laura Edwards

July 4 is next week, and unlike so many years of my childhood, we’ll spend the holiday at home in Charlotte. We used to celebrate Independence Day in the waterfront park of Southport, NC. Every year, we packed a huge picnic and spread our blankets in the grass and stuffed our bellies and stretched out on our backs to watch fireworks in every color of the rainbow light up the black sky over the Cape Fear River. Then, we piled in our car, exhausted but happy, and drove back to our beach house on Oak Island.

We haven’t seen the Southport fireworks in more than 15 years. In that time, my grandparents had to sell the beach house. Marriages ended. Kids went away to college, graduated and got jobs. Weddings happened. We learned that my little sister has Batten disease. My grandmother, an angel on earth and the matriarch of our family, went to heaven this past Christmas Day.

Five or six years after my grandparents built the beach house, the town started to have problems with erosion on the beach. My grandmother once told me that the problem stems from the fact that Oak Island meets the Atlantic Ocean at an odd angle. The cabana at Long Beach just up the street from our house washed away, so the town rebuilt it. If we wanted to take a walk on the beach, we had to time it just right, or else our walk could turn into a swim.

And yet, that sandy finger of land on the coast of North Carolina always held magic for us, even as the forces of nature exerted their will. We loved the new cabana just as much as the old one. We missed having a wide beach, great for long walks and sand dollar hunts and dreaming, but we just pulled our chairs right up to the dunes where the waves couldn’t get us, dug our feet into the thick sand and drank up the sun.

But life is not a beach, and Batten disease is not the ocean.

Will these waves of change keep pounding away until we have nothing left but our memories?

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.

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.