Fuel for the Journey

Published: October 27, 2013 ~ 5

By Laura Edwards

A couple of weeks ago, Andrew and I broached the topic of hydration for the upcoming Thunder Road Half Marathon. Thunder Road, like most races of any considerable distance, offers water stations every two miles along the course. But if you’ve ever run a race with water stations, you know they’re a human traffic jam. I always try to slow down enough to avoid sloshing water or Gatorade down the front of the volunteers (often kids and their parents) manning the stations as I take a tiny paper cup. But a lot of runners come through the water stations like an animal stampede, and the stations at some of the bigger races are a mishmash of tangled legs and sweaty bodies and spilled water and electrolyte replacement drinks.

That said, Andrew and I decided weeks ago that the water stops at Charlotte’s largest race are the last place a blindfolded runner and her sighted guide want to be. But I can’t run 13.1 miles without water. I’ve never liked the fuel belts that hold small bottles of water and strap around your waist, and I worried that I wouldn’t be able to take the bottle in and out of the belt on the run without my vision. I often carry a water bottle on my longer solo runs, but on race day, I’ll have the bungee cord in my left hand and want to keep my right hand free.

hydration pack

My brother, Stephen, is into mountain biking and suggested I buy a small Camelbak pack with a water bladder. I’ve hiked hundreds of miles in America’s national parks, but my hiking pack isn’t what you’d call road race material. So this afternoon, I went to REI and bought a purple Camelbak pack. I’ll need to take it on the road a few times before the race to get used to the extra weight and bulk, but I’m excited that I solved the water station dilemma.

I ran 10 miles close to my target pace yesterday and followed up with a 5.2-mile run today. My ankle injuries of summer and early fall seem like distant memories, but I’m not taking any chances. And with the Camelbak purchase, I’m almost set for Thunder Road.

The purple pack will provide my body with fuel for my 13.1-mile journey in the dark. And while conventional wisdom tells me there’s nothing more important than water for survival on the race course or in life, I’ve got something much stronger fueling my fire to complete the race of my life and keep fighting long after Andrew and I cross the finish line.

I’ll let you in on a little secret: seven years ago this past July, I promised my little sister I’d save her life. But I haven’t succeeded, and now, all of a sudden, Batten disease is running a lot faster than me. That makes me mad as hell. I don’t like to lose, especially when people I love get hurt. And THAT, more than the coldest, freshest water or the world’s best sports drink, is my fuel for the journey in the fight of our lives.

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 and help us turn Thunder Road purple for Taylor! 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.” Wear purple and run for us to help raise awareness on race day. If you’d rather cheer, stay tuned for details about the official Taylor’s Tale cheer station on the course!

The Real Heroes

Published: October 26, 2013 ~ 4

By Laura Edwards

Taylor finished the 5K race at Thunder Road in 2008 guided by two angels and the wings of her own courage.

Three weeks from today, I’ll run the biggest race of my life. I’ve run Charlotte’s Thunder Road Half Marathon three times since 2009, but on Saturday, Nov. 16, I’ll run it blindfolded.

Late Wednesday night, I went out for training run number 16 with my pinch runner – my husband, John. The temperature dipped below 50 degrees for the first time this autumn. I left my black tights at home to make myself more visible to passing cars, and though I didn’t see the goosebumps on my legs, I felt them. I called out manholes and irregularities in the road to my inexperienced pinch runner – not the other way around – but I stayed on my feet and didn’t suffer any sprained ankles throughout 2.18 slow miles.

As much as I love my husband and appreciate his willingness to take me out for a run at 10:15 on a weeknight, I can’t wait to get back on the road with my friend, Andrew Swistak, a seasoned runner born to lead the blind(folded). I feel safe when Andrew’s on the other end of the bungee cord, even though I had a crash landing on one of our training runs back in July. With my friend’s coaching in my first race of 2013, I conquered a nasty hill at mile eight, found energy I didn’t know I had at mile nine and set a new personal record (PR) for 10 miles. With Andrew’s help, I believe I can run not only a safe race, but a FAST race for Taylor at Thunder Road in three weeks.

But this isn’t about me, and it’s never been about me. So more than a fast time or an injury-free race, I’m hoping for this: that my 15-year-old sister, who’s had a rough few months in her fight against infantile Batten disease, will be well enough to come to the finish line. I want her to be the first person I see when I take off my blindfold. I want her to be there so I can give her a sweaty hug and tell her how much I love her, even though she can’t say “I love you” back.

Because the battle Taylor fights every day is a thousand times tougher than running a race in the dark.

I’ve spent hours blindfolded, but I’ve never been blind. I’ve vowed not to remove my blindfold at any point during Thunder Road, but if I wanted to see the endless sky above my head and the pavement beneath my feet and the bare November branches and the crowds lining the streets, I could do so.

I’ve never been blind, but I think that perhaps losing sight of the real purpose is the worst kind of blindness.

Taylor, and the several thousand others living with Batten disease, and the millions of people worldwide facing a rare disease without a single approved treatment or cure, are the real heroes.

The moment I forget that – the moment I make the story about myself – I’ve lost my way, and even Andrew won’t be able to lead me back.

Join the Taylor’s Tale team and help us turn Thunder Road purple for Taylor! 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.” Wear purple and run for us to help raise awareness on race day. If you’d rather cheer, stay tuned for details about the official Taylor’s Tale cheer station on the course!

One Month to Go

Published: October 17, 2013 ~ 0

By Laura Edwards

This is it. One month to go. On Saturday, Nov. 16, I’ll rise before the sun. I’ll go through the familiar process of shuffling into the kitchen to eat a bagel and drink a glass of water, pulling a chilly, purple tech shirt and tights over goose-pimpled skin and lacing up my Brooks shoes on the back doorstep. I’ll snap my Spibelt pack around my waist, stuff a few energy chews into my pack, check my phone’s battery life and pin my race bib onto my shirt. I’ll sling a short bungee cord over my shoulders. I’ll make my way to uptown Charlotte. And sometime between 7:15 and 7:45 a.m., I’ll temporarily blind myself with a purple blindfold. It won’t be the first time I’ve blinded myself. But it’ll be the moment my sighted guide and I have worked toward for months.

I don’t know how much I expected to have to train for a blindfolded half marathon. More than 20-odd times, that’s for sure. But last night, we logged just our 15th training run in four and a half months. I hope we have a few more practice runs in the weeks to come, but even if we don’t, I believe Andrew and I could run the Thunder Road Half Marathon tomorrow. We ran 4.05 miles after much of the neighborhood went to sleep last night. Our speed still isn’t where I want it to be, but I think that the twisty roads, speed bumps and cul-de-sacs have something to do with that, too. I can’t wait for the freedom of the race course.

On race day, pace/speed will NOT be my main concern, but I think I – WE – have it in us to post a great time. And if the going gets tough, I know that all I’ll have to do is visualize my sister running her first 5K on that same course five years ago, facing the world’s worst disease but refusing to let it stand between her and the finish line or the life she wanted to live. I know that the image of her living her dream will stay with me for all 13.1 miles as I run to the light.

We have a lot to run for.

Are you with us? Read on to find out how you can join us on race day, either in person or from afar.

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! If you’d rather cheer, stay tuned for details about the official Taylor’s Tale cheer station on the course!

Running with the Deer, but not Like the Deer

Published: October 10, 2013 ~ 0

By Laura Edwards

A few minutes after 10 last night, Andrew picked me up for blindfolded run number 14.

We’re just over five weeks away from the Thunder Road Half Marathon on Saturday, Nov. 16, when I’ll run 13.1 miles blindfolded, in a real race with thousands of other people, guided only by Andrew’s instructions and my little sister’s courage.

My custom blindfolds arrived all the way from the U.K. earlier this week. I ordered two – a purple one for Thunder Road and a white one for our late-night training runs. On its maiden voyage, the white blindfold earned an A-plus compared to the ragged bandannas I’ve used to blind myself since early June, and I know its twin will serve me well on race day. I also practiced running with a water bottle in my right hand; I hold one end of a short bungee cord – my lifeline in a dark world – in my left. Andrew and I discussed the “problem” of water stops early on in our training and decided that the crush of people is just too dangerous, so I’ll carry my hydration with me.

Two times during last night’s run, we crossed paths with the curb that took my ankle the first time I ran blind, on the night of June 5. That night, I got cocky and tried to jump the curb mid-stride, even though I’d been a blind runner for all of 20 minutes. Last night, Andrew and I didn’t take any chances. Well before we reached it, we slowed to a walk and took a deliberate high-step over the offending obstacle. I’ll crawl the length of the race if that’s what I have to do, but I’d rather not.

We spent much of our 4.78-mile run traversing a side road outside our neighborhood (we ran in traffic, but there isn’t much late on a weeknight in our part of town). A huge herd of deer lives nearby, and at one point, Andrew told me he saw a few off in a clearing to our left. So at 10:30 last night, I was running with the deer. At a 9:47/mile clip, I wasn’t running like the deer, but that’s not the point, after all. For the first time ever, my main goal for a race won’t be to run it as fast as I can. I’d still like to get faster. I ran the Thunder Road Half Marathon in 1:57:20 last year, or an 8:58/mile average. With Andrew guiding me, in broad daylight, I think I can match that time blind.

But Taylor never cared about running fast. Taylor only cared about crossing the finish line. And now, fighting Batten disease with every ounce of strength and courage that could possibly be squeezed into one body and one soul, she can’t focus on being the best.

She can only hope to survive.

The Blindfold

Published: October 8, 2013 ~ 2

By Laura Edwards

It’s here – my custom blindfold! I’ve been training for the Thunder Road Half Marathon with a raggedy bandanna, but I thought running 13.1 miles blindfolded for Taylor and the fight against Batten disease called for something special. I ordered my blindfold in Taylor’s Tale purple from the U.K. (I love eBay). About four years ago, I scrawled the phrase “4Taylor” down my left arm in purple marker just minutes before leaving for one of the many races I’ve run in my little sister’s honor since she crossed the finish line of her first 5K, blind and battling for her life. I’ve never run a single race without doing it since. Often, when I come to a steep hill or hit a rough patch in a tough race, I’ll glance down at that phrase on my arm. Even if I’m wearing long sleeves, I know that it’s there. And thinking about Taylor’s courage in the face of the world’s worst disease gives me the extra push I need to dig into my deepest energy reserves. It works every time.

Now that you know exactly what to look for on race day, I hope you’ll join me out on the course if you’re able. Read on to find out how you can be part of the Taylor’s Tale team at Thunder Road or support the cause from afar.

A Glimmer of Light

Published: October 3, 2013 ~ 0

By Laura Edwards

Under the watchful eye of the crescent moon and several stray clouds a few minutes after 10 last night, I pulled a worn bandanna over my eyes, took one end of a short bungee cord and took off with my sighted guide at my side for blind training run number 13.

Andrew set an easy pace for our four-mile run; we never averaged better than a 9:02 mile (of course, I saved my best for last; it doesn’t make sense because I’m a natural sprinter, but I get faster as I go). For the first time, we also played it safe on all of the ankle-breaking obstacles, walking over the decorative stamped concrete strips and speed bumps. With the Thunder Road Half Marathon just about six weeks away, we didn’t want to risk another ankle injury.

I can’t see shapes or colors through either of the “blindfolds” I’ve used for training, but at night, flashing traffic signals, bright headlights and even the light from some street lamps penetrate the thin fabric. Last night, I made out a street light about halfway through our run and figured out our location in relation to my house.

Batten disease is a degenerative disease. Everyone’s different, but what that means for Taylor is that she had all of her abilities and seemed healthy until about the first grade, and she didn’t have any physical problems until a year later, when she began to lose her night vision. She went blind over several years, losing first her night, then her central and finally her peripheral vision. I’ll never forget a moment outside a year-round Christmas shop on the South Carolina coast during a family vacation a few years after her diagnosis. When we walked by the shop, Taylor mentioned the “pretty Christmas lights,” stopping us all in our tracks. I don’t know if my sister ever saw the lights on her own Christmas tree again after that hot summer night at the beach. But when that glimmer of light darted into her shadowy world and brightened it, if only for a moment, it made my heart – if not my head – believe she had a very bright light waiting at the end of her twisted, dark tunnel.

“It made my heart – if not my head – believe she had a very bright light waiting at the end of her twisted, dark tunnel.”

My sister and I are not the same. I can still see flashing lights through thin fabric, and I can take off my makeshift blindfold whenever I want. Last week, I custom-ordered the thickest blindfold I could find; it should be here any day now. I’ll wear it at Thunder Road, because I want to run as my sister ran: in total darkness, with nothing but my guide and Taylor’s courage to lead me to the end. And when Andrew and I cross the finish line, I’ll rip off that blindfold, and I’ll take in the light with the two working eyes God gave me. Because I know tragedy, and it makes me want to fight that much harder to hold on to all the good that I have.

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!

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.

The Path Not Chosen

Published: September 18, 2013 ~ 4

By Laura Edwards

Charlotte’s Thunder Road Half Marathon is less than two months away. I could run a full marathon tomorrow, but I promised my little sister, and the rest of the free world, that I’d run the half marathon blindfolded. That’s right – blindfolded. I gave myself five months to learn to run in the dark, guided only by the feel of the road beneath my feet, verbal instructions from and occasional tension placed on a three-foot bungee cord by my sighted guide, Andrew Swistak.

Five months sounds like plenty of time to learn how to be blind, right?

When I woke up this morning, I’d run in my world of darkness a grand total of nine times. Andrew and I live pretty crazy lives, so it’s not always easy to get together, even for a 30-minute run.

So tonight, when my husband, John, said he’d pinch run for Andrew for a second time, I had my blindfold on before John could lace up his shoes.

My husband is talented at many things, and I admire and love him for taking a turn on the other end of that bungee cord – my lifeline on these runs. But he’s not an experienced runner like Andrew, and while Andrew’s only led me on eight blind runs, eight is a heck of a lot more than one. On top of that, my ankles are still wobbly, and I just put 60 miles on them in Grand Teton and Yellowstone National Parks.

So we took it slow – 11:33/mile over 2.07 miles, to be exact (almost three minutes per mile slower than my average pace for a half marathon). We had a few hiccups. We haven’t mastered our spacing or our tension on the cord or our timing for turns the way Andrew and I have mastered all of those things.

But I didn’t fall. I didn’t hurt my ankles. And when you have 20-20 vision with contact lenses and you promised the world you’d run a half marathon blind, 10 practice runs in a blindfold feels better than nine practice runs in a blindfold.

And my pinch runner and I might have been slow as a couple of snails on practice run number 10, but I like to look at the bright side of things. I got to spend time with my husband – time I wouldn’t have had with him otherwise; I didn’t hurt my ankles, whereas quickening my pace could have been dangerous; slowing down helped me experience sensory things, such as the feel of a divot in the pavement, a “hello” from a passing neighbor and a cool breeze on my skin, autumn whispering after the lingering summer heat died with the setting sun.

I woke up this morning hoping I could notch blindfolded run number 10 with Andrew, my sighted guide for the Thunder Road Half Marathon. After all, the more miles we log together, the better we’ll be together on race day.

But instead, I hit the streets with my pinch runner. And though it’s not the path I would have chosen, I made the best of my situation.

Race training schedule conflicts don’t come anywhere close to having a monster like Batten disease in your genes. But we can’t do anything to turn back time; to change what’s already encoded in Taylor’s cells. Though we cherish the memories of the days before the knowledge of Batten disease came crashing into our lives, we can’t look back. We can look at the photos that captured Taylor’s eyes when they could see; in my mind’s eye, I can see her running down the beach and crashing into the waves, her golden locks blowing in the breeze and her silent laughter filling my ears.

We can’t bring back the past, but we can change the future. We can change it for lots of Taylors.

Batten disease isn’t the path I would have chosen, not in a billion years. But I’ll make the best of this situation, even if my own life depends on it. I’ll keep running this race till the very end.