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.

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.

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.

A Leg to Stand On

Published: July 1, 2013 ~ 0

By Laura Edwards

On June 5, I began training for Charlotte’s Thunder Road Half Marathon with a good friend, Andrew Swistak. Andrew and I could both run a half marathon tomorrow, but on Nov. 16, I’ll run 13.1 miles blindfolded in honor of my little sister, Taylor, who suffers from Batten disease. If you’ve been following my blog for the past month, you know that I twisted my ankle the first time I ran in the dark and that I re-injured it hiking in the mountains of North Carolina eight days ago. The ligaments in my ankles are like old rubber bands, and my worst fear came true not more than 30 minutes after I told Andrew I wanted to give darkness a trial run.

Brooks shoes

But for eight days, I behaved. I swore off running, instead heading to my local YMCA to do free weights and crunches. I stuck a box of extra stroke symposium invitations under my desk at my hospital marketing and PR job, kicked off my shoes and propped up my bum ankle. I sported an ACE bandage, a fabulous summer accessory, and iced several times a day. And when I got home tonight, I said hello to my running shoes. “Oh, how I’ve missed you. Do you have room for a brace in there? We have some catching up to do.”

As I glanced at the clouds dotting the sky, checked the late-night forecast one last time and changed into my neon-colored running shirt, I thought about how my sister, Taylor, can’t beat the symptoms of Batten disease in eight days’ time. I thought about how I trashed my ankles playing soccer because of choices I made, not because of predetermined information in my genes. I thought about how I have wet spaghetti noodles for ankle ligaments, and yet I can still lace up the best hiking boots money can buy, dig my poles into the earth and hike 17 miles round-trip in a day, seeing some of God’s greatest wonders along the way. Taylor can’t hike, and she can’t see. Batten disease ripped my heart out the day I learned its name, but it’s stolen so much more from my sister.

Batten disease wants to steal Taylor’s life. But it hasn’t succeeded yet. Every day, my sister wakes up in her world of darkness, and she finds a reason to smile. I call that courage. Tonight, I’ll summon some of her strength when I wrap my injured ankle and set out into the darkness for blindfolded run number six. And for as long as I’ve got a leg to stand on, I’ll run for her.

Taking Risks

Published: June 24, 2013 ~ 0

By Laura Edwards

Training run number five got off to a late start last night, because my sighted guide, Andrew Swistak, and I both wanted to watch aerialist Nik Wallenda attempt his tightrope walk across a gorge near the Grand Canyon.

Nik Wallenda and his family of aerialists, acrobats and daredevils are famous because of the risks they take and the feats they attempt in order to entertain an audience.

I remember how my stomach dropped when I saw people scrambling like ants on a log up the razor-thin switchbacks to Angel’s Landing in Utah’s Zion Canyon on a hiking trip in 2009. I know I’ll never try anything even close to the performances that are ordinary for someone like Nik Wallenda.

But every time I pull a blindfold over my eyes and join my sister in her world of darkness, I take a risk to gain an audience and honor my sister. I realize that the two situations are not the same. I know I’m not risking my life. I’m never alone, and Andrew was born to lead the blind on the run. But all of the radiology imaging tests and physical exams from over the years don’t lie, and in case I dare forget, the auditory popping of my ankles serves as a daily reminder. Soccer – my first love – shredded the ligaments in my ankles, and I’m running on flat tires. So when I mistimed a curb jump and felt my left ankle go left, then right, then left again the first time I ran blind, on June 5, I suffered a setback.

Soccer’s taken me down this road before, though. As I joked to someone today, I didn’t have a clue what to do when I injured my Achilles tendon in 2011, but I can medicate and elevate and ice and tape an ankle like a pro. Andrew and I can cut our runs short, as we did last night (we logged just 2.61 miles after watching a teary Nik Wallenda twinkle-step the last few feet of his journey). And if all else fails, we can succumb to my ankle and take a short break. We’ve accomplished more in five runs together than I ever dreamed possible.

And like I’ve said before – no matter what happens, when race day arrives, we’ll be ready.

Because it’s for Taylor.

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.