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!

My Sister’s Legacy

Published: October 22, 2013 ~ 0

By Laura Edwards

My sister has a 501(c)3 non-profit organization named for her. She’s the face of Taylor’s Tale and the inspiration for the work we do. People from North Carolina to California and the United States to Australia have heard of Taylor King.

We could name a building or a wing or a monument or a garden for my sister. We could adopt a mascot influenced by all of Taylor’s favorite things. We could put her name on an annual event to make it more difficult for the public to forget her.

But none of those things will help future Taylors. None of those things will save lives.

My sister’s very sick. We’ve never denied that fact. We’ve fought like hell to keep her healthy. We’ve fought like hell to beat Batten disease till it couldn’t come back.

But now, tomorrow is today. I run as fast as I can, but some days, I just can’t run fast enough.

I fight for Taylor because I love her. I fight Batten disease because I hate its guts. I fight rare diseases because I don’t think 350 million people deserve to be told their disease is “just too rare.”

But I don’t want a trophy for anything we’ve accomplished. Batten disease is still killing kids, so we haven’t achieved what we set out to do. And I think Taylor’s life is worth more than a thousand trophies.

I just want an answer for people like her. I BELIEVE we’ll get there. And one day soon, when scared parents sit in the bad news chairs in a doctor’s office somewhere and the doctor says, “It’s very serious, but this is what we’re going to do together to fix it,” THAT will be her legacy.

My little sister turned 15 in August. I can’t talk with her anymore, but her smiles and laughs offer a glimpse of the Taylor I know is still in there, bottled up and fighting, always fighting against the monster in her genes. Her quiet courage has inspired people across the globe to fight for a better world for people like her.

That may just be her greatest legacy of all.

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!

A Spidery Web

Published: October 13, 2013 ~ 0

By Laura Edwards

Halloween front porch

Autumn hasn’t yet arrived to paint my hometown of Charlotte with its palette of brilliant crimson, gold and flame. But when I went for a solo run to train for the Thunder Road Half Marathon this afternoon, kids played in their Halloween costumes in cul-de-sacs, and the smoky sweetness of fall hung in the air. Pumpkins destined to become jack-o’-lanterns dotted every other front porch.

Just as I found my stride, my mind began to wander to memories of my grandmother. Born on Oct. 31 in 1940, Grandma Kathryn loved Halloween. I called her my Halloween witch, but if she was a witch, she was more like Glenda the Good Witch of the North than her green-hued sister from the West or her ill-fated, ruby slipper-wearing sister from the East. Born on Halloween, she never did a ghoulish thing in her life, instead living a life every bit worthy of the angel wings she received this past Christmas Day. She was far too young to go, and sometimes I think that maybe she was just too good for this world – that God had a greater purpose for her in a place we can’t even imagine. I haven’t always lived my life with honor, but she did, and when I go about my days now, I try to think about what my grandmother would have done before I act.

A love of Halloween is something my sister and my grandmother shared. Taylor’s a girly girl to the core, so a holiday based on a big game of dress-up suited her just fine. She didn’t even much care about eating the candy. But a couple of her costumes “required” eye makeup, blush and a touch of lip gloss. My sister once decorated herself and the cream-colored rug in our parents’ dressing area while sampling all of our mom’s cosmetic products. She couldn’t wait to wear makeup, even as a toddler, and Halloween gave her an excuse to wear lipstick way before she turned 16.

Then, of course, Batten disease crashed into our lives in 2006, the year Taylor turned 8. It didn’t so much crash into my sister’s life as slide into it, because while all of us absorbed our new, terrible knowledge about the progression and ultimate outcome of a disease we’d just met and figured out how to fight it, Taylor remained an oblivious third grader with some night vision loss and learning difficulties.

As the years passed, Taylor, too, got tangled in the spidery web that is Batten disease. In a cruel, ironic twist, what used to be one of her favorite nights of the year became a twist of the knife in all of our backs, including hers. As my sister’s vision and mobility worsened with time, navigating the neighborhood streets during trick-or-treating became more and more difficult. More painful than that, though, was watching as she stood in the open doorways of neighbors who didn’t know about her illness, and the neighbors waited expectedly for her to reach out and take candy from the outstretched bowl. When she stood there motionless – because she couldn’t see the bowl – John, my dad or I reached out in silence to take a few pieces of candy and drop them into Taylor’s trick-or-treat bag.

The only thing that stopped me from losing it in those moments was the sight of my sister on all of those front porches, blind and quickly losing her footing on a slippery slope above the deep, dark chasm of Batten disease, nevertheless standing stick-straight, her shoulders back and her head held high, wearing her Halloween costume like a champ.

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!