A Blind 10K, and Some More for Good Measure

Published: September 28, 2013 ~ 4

By Laura Edwards

This morning, Andrew and I did the most normal thing in the world: we drove to an almost deserted office park south of our neighborhood and warmed up with a .82-mile jog at about a 9:00/mile pace. But that’s when we threw “normal” out the window: when Andrew handed me one end of a short bungee cord, and I pulled a purple blindfold down over my eyes, blocking out the brilliant sunlight in the cloudless sky. That’s when two runners – one sighted, one blind – stepped into the bike lane facing traffic and picked up the pace for a 6.5-mile run.

Blind run number 12 marked not only our longest run to date, but also our fastest. Over 6.5 miles, we averaged about an 8:30 mile and even briefly dipped into the sixes on some of the downhills (without taking a double face plant). I ran faster with the blindfold than without it, even at the end of the run.

With the exception of one large loop in an offshoot, we traversed the same road – a road with a gradual climb – several times and made a U-turn each time we reached the end (doing so allowed us to practice our double U-turn skills!). That gave me a very different sensation from all of the tight cul-de-sacs and speed bumps in our neighborhood. The road also included a bridge over Interstate 485, with a different surface from the pavement covering the rest of the road. The bridge felt like corrugated cardboard beneath the soles of my high-cushioned Brooks running shoes. We passed a few walkers, runners and cyclists. Andrew told me that once, we passed a woman wearing a purple shirt (purple is the color for Taylor’s Tale). Another time, he told me that a mother driving with her teenage son in the passenger seat slowed the car and pointed, urging her son to look at us (I smiled with my eyes beneath my blindfold when Andrew told me that). We – or at least I – had one scary moment when a driver came flying down the road in our lane. Without my vision, I had no concept of whether or not I was about to be hit by a car, and I instinctively jumped toward, and almost into, my sighted guide (and my stomach jumped into my throat). Andrew told me the car was about 10 feet from us, but the driver was speeding so quickly that I felt all of the car’s force in my bones. I wonder now if Andrew felt the same way, or if I felt it at a heightened level because I couldn’t see it coming.

My goal for the Thunder Road Half Marathon is to average at least a 9:00 mile. I ran faster than that in the race last year and think that with Andrew’s direction and Taylor’s courage to guide me, I can match that even without the gift of sight.

news 14 filming

p.s. Earlier, I called today’s outing blindfolded run #12, but I didn’t count this past Monday, when I donned the blindfold and ran with Andrew for a News 14 Carolina story that aired in Charlotte. You can watch it online here. More coverage is on the way, so stay tuned!

As a reminder, I’m doing this crazy thing not just so I can talk about it, but to help support our fight against Batten disease and to save people like Taylor. Read on to find out how you can support our efforts through my run as well as how you can join our team on race day. If you plan to run for our team, please send me a note ASAP (even if you won’t register ASAP) to help us plan. Thank you!

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.

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!

Running in the Dark Under the Watchful Eye of the Sun

Published: September 19, 2013 ~ 0

By Laura Edwards

Meet my pinch runner for my blindfolded runs – my better half, John. After work tonight, John offered to take me out again – or, as he likes to say, “take his wife for a walk” (on the bungee cord, which does kind of look like a short leash from more than five feet away).

We struck out just a few minutes after 7 p.m., so we had plenty of daylight left. I pulled the blindfold down over my eyes for the 11th time overall, but just the second time before sunset.

Running in the “dark” opened my eyes to a whole new world; in all of my previous training runs, I’ve heard sounds and felt sensations that were always there but drowned out by the wealth of visual information I’m able to take in and process with the 20-20 vision I get from strong contact lenses or glasses. I’ve picked out single notes from cricket symphonies and come to know the touch and feel of warm raindrops on sweat-soaked skin.

I’ve picked out single notes from cricket symphonies and come to know the touch and feel of warm raindrops on sweat-soaked skin.

But running in the dark under the watchful eye of the sun is an entirely different experience. As John led me around our neighborhood to help me train to run a half marathon blindfolded in honor of a girl who’s anything but ordinary, suburban noise – the soundtrack of life as usual – filled my ears. A young boy said goodbye to his grandma; car doors closed. Kids played in a cul-de-sac while their moms stood in a driveway and talked. A dog got away from its owner and ran toward us, so we practiced coming to a stop without adding an unwanted flip and roll. A woman taking a walk said “That’s amazing” when she approached us.

John and I don’t live in a small neighborhood; with 800 houses inhabited by mostly families, we easily have over 3,000 neighbors. But it’s still a small corner of the world when you consider that seven billion people live on this planet. And yet, so much life – so many memories – happened in the short time it took my husband and me to run three blindfolded miles on its streets. I can’t tell you a single thing about what that boy or his grandma looked like or what game those kids played, what kind of dog came to say hello to us or if the walker had kind eyes. I love my blind runs, but I miss a lot, too.

Batten disease steals so MUCH from my sister. And that’s just the blindness. When I pull that blindfold down over my eyes, I disable my vision, but I don’t give myself seizures or cognitive impairment; I don’t take away my ability to walk – in fact, my legs work just fine (even though my ankles are another story); and when I get a runner’s high, I feel invincible, like maybe I’ll live forever.

But then, the run ends, and I take the blindfold off, and I’m just me again – the sister who got a healthy copy of the Batten disease gene. Taylor didn’t do anything to deserve two bad copies of that gene. It makes me mad as hell that she got them anyway. And I’ll never stop running for her.

But then, the run ends, and I take the blindfold off, and I’m just me again – the sister who got a healthy copy of the Batten disease gene.

Taylor’s Story Featured in Friday FITspiration Series

Published: August 23, 2013 ~ 0

By Laura Edwards

Head over to www.runladylike.com, where Jesica – an ordinary runner on a mission to find her extraordinary – shares her “uncensored and often unladylike adventures of running and triathlon training.” Today, she featured Taylor’s incredible story of courage and my plan to run a half marathon blindfolded in her honor on her “Friday FITspiration” series.

I’m grateful to Jesica for sharing our story in such a beautiful way. I’m grateful we connected, and I can’t wait to continue following her running adventures. Later today, she’ll start a journey of her own as she takes part in the famous Hood to Coast race in Oregon, a state that enchanted me with its beauty when I visited it during the week of Taylor’s surgery 11 months before that first 5K in 2008. Best of luck to Jesica, and happy trails to all of my running readers! Don’t forget, you can join the Taylor’s Tale team at Thunder Road on Nov. 16. We’d love to have you!

Read the story

My Birthday Wish for Taylor

Published: August 18, 2013 ~ 3

By Laura Edwards

My sister, Taylor, will turn 15 on Monday. Taylor’s less than half my age, but she’s my hero. She’s done some pretty incredible things in her short life – like run two 5K races despite the fact that she’s blind and suffers from Batten disease, which is pretty much the worst disease on the face of the earth. That’s why, in three months, I’ll run Charlotte’s Thunder Road Half Marathon blindfolded to honor her and help find a treatment for Batten disease.

I’ve had the same birthday wish for Taylor every year since her diagnosis in 2006. I want a world where people like my sister can dream of growing old. I believe in that world. Tomorrow, in honor of my sister’s birthday, you can do one of three things to help Taylor’s Tale achieve that dream:

Sign up to run for Taylor at Thunder Road on Saturday, Nov. 16, and help us turn the course purple for Taylor’s Tale. You can run the marathon, half marathon or 5K. Note: blindfold not required. 🙂 Be sure to join our team during the registration process. 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 honor Taylor and help raise awareness of Batten disease on race day. In return, you’ll receive a moisture-wicking team shirt and an invitation to an optional post-race get-together. Stay tuned for more details! Click here to register now.

Make a gift to Taylor’s Tale in honor of Taylor’s birthday and help support our fight against Batten disease and other rare and genetic diseases. All donations are 100 percent tax-deductible. We fund research that has the potential to lead to treatments for human beings. We’ve supported work at top institutions in the United States and Europe. Today, we’re co-funding work at the University of North Carolina that could lead to life-saving gene therapy for Batten disease and many other genetic diseases. To make a donation, click here.

Run 3.1 miles – or a 5K – for Taylor on her birthday, Aug. 19. Visit our Facebook page and share a post about your run. Be creative – share a photo or a description of your run, or just tell us that you did it! You can also connect with us on Twitter. Share your run with us on Facebook and Twitter.

Thank you for helping us write the happy ending to Taylor’s Tale!

Someone has to Run for T

Published: July 30, 2013 ~ 2

By Laura Edwards

I run races year-round. Twenty years on the soccer field did a lot of damage, and I deal with injuries all the time. But on Nov. 16, I’ll run the most important race of my life, and I’m not taking any chances. Early that morning, I’ll pull a blindfold over my eyes and honor the five-year anniversary of my little sister’s first 5K at Charlotte’s Thunder Road Half Marathon. So this morning – the start of my third day with an obvious limp – I took my balky ankle to see my sports medicine doctor for an exam and X-rays.

The good news is that I don’t have any broken bones, and the weird stuff my doctor saw was already there on an X-ray from 2010 (which doesn’t say much for my long-term joint health but bodes well, I suppose, for THIS race). I went home with a prescription for two weeks’ off from weight-bearing activities, running included, and frequent icing.

I’m one of the world’s worst patients, because I can’t stand to sit still. But this time, I’ll listen. I’m on a mission, and I won’t do anything to threaten it.

After my appointment, I sent a message to my mom, who has never run a race of any distance but will run the Thunder Road 5K for Taylor’s Tale. I promised to coach her to her goal of running 3.1 miles this fall, and in my message, I offered to meet her at the indoor track tonight to lift weights and provide instruction from the sideline.

Nine minutes later, she responded:

“On the treadmill right now. Someone has to run for T!”

Mom on treadmill

What does a go-getter like my mom need with a gimpy coach like me, anyway? Sans instruction, Mom logged 30 minutes on the treadmill, alternating two minutes of walking with three minutes of running at 5.2 miles per hour. One week ago tonight, Mom ran for the first time; as she took her first strides, she told me she didn’t know if she could run 3.1 miles without stopping. When she hits the open road on race day and breathes in the clear, cool November air, she won’t remember saying those words.

Besides, she didn’t really mean them. Because she’s my mom. And my mom ALWAYS believes.

I believe, too. I believe in my mom; I believe that my ankle will heal; I believe in Taylor’s courage; I believe that we can achieve our dream.

You can join my mom, my sighted guide and me on the Taylor’s Tale team at the Thunder Road races on Nov. 16. Scroll down to learn how, and stay tuned for more details!

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.

When to Fold a Hand

Published: July 28, 2013 ~ 0

By Laura Edwards

In case you haven’t heard, I’ll run Charlotte’s Thunder Road Half Marathon blindfolded to honor my sister and support the fight against Batten disease and other rare diseases on Nov. 16. I’m a seasoned runner with a drawer full of half marathon and 10-miler race medals. But I’ve never run a race of any distance without my vision, so my training for this race is unlike anything I’ve ever done before.

I returned from a long weekend in the North Carolina mountains this afternoon and made plans for a late-night run with Andrew Swistak, a good friend and my sighted guide for Thunder Road.

But just an hour after I messaged Andrew, I aggravated the still-weak ankle I injured on our first training run, all the way back on June 5. I don’t have any idea how I hurt it; I felt a sharp pain walking from my back door to my kitchen. In any case, I’ll be brushing up on my R.I.C.E. skills (rest-ice-compression-elevation) right about the time that Andrew and I would have met at my mailbox for blindfolded run number eight.

I’m frustrated about this latest setback, which may end up being nothing more than a one-day punishment – perhaps my body’s gentle way of telling me that I wore the wrong shoes to traipse around downtown Asheville, NC for two days. I’m sorry I won’t squeeze in a practice run tonight but am grateful, really, that logic won out in the end. Because the last thing I need is an injury I can’t overcome.

My sister’s fight against Batten disease has its ups and downs, too. She has good days and bad days. She has a heck of a lot of courage – far more than I’ll ever have – but even so, some days, the disease still gets the best of her. For her sake, we have to know when to fight back with everything we’ve got, and when it makes sense to fold a hand so we don’t lose all our chips in the end.

I might be taking tonight off, but I’ll drag my body – bum ankle and all – back out on the road as soon as I can. And I’ll cross that finish line for Taylor on race day, even if I have to crawl. You’d better believe I’ll fight for my dream – to save the lives of people like her – until we win.

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.

Just a Little Rain

Published: July 25, 2013 ~ 0

By Laura Edwards

Summer always flies after the Independence Day fireworks. August will be here next week, it will be a blur, and autumn will arrive. On Nov. 16, I’ll run Charlotte’s Thunder Road Half Marathon blindfolded to honor the five-year anniversary of my little sister’s first 5K race and support the fight against Batten disease. But I’m not ready to run that race today, which is why, as the last full month of summer drew near, I became concerned that my sighted guide and I last ran together on July 1.

storm quote

But Andrew is as committed to this cause as he is skilled at guiding a sighted person wearing a blindfold on the run. So, despite a steady, warm rain, he climbed up my mountainous driveway at 10 last night, took one end of the three-foot bungee cord that is my lifeline and led me down the hill into my dark, wet world.

We ran approximately 3.1 miles – or a 5K – in the rain. I didn’t take my phone, and I heard a beep that told me my Garmin had died about five minutes after we left, but Andrew told me we averaged about an eight-minute mile or just a little over.

My first six blindfolded runs opened my eyes to a whole new world of sensory experiences. My seventh introduced me to an entirely different one; because I didn’t see the raindrops as they fell from the sky, I felt as if I discovered something new each time one made contact with my skin. I never knew exactly how to describe the way a raindrop feels; I still can’t put it into words, and yet, I understand it on a whole new level.

I would never want to give up my vision. At the end of all of our runs, when Andrew announces that we’ve arrived at my mailbox, I respond by taking off my blindfold. I’ve never tried to say goodbye or climb my driveway or walk inside without my eyes. But a long time ago, Taylor taught me that life is about taking what you have (or don’t have) and making the best of it. It’s about finding beauty in tragedy. It’s about learning to dance (and run) in the rain.

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.

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.

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.