Back in the Dark

Published: June 4, 2014 ~ 2

By Laura Edwards

I find that having an almost naive belief that most everything is possible fuels a mindset that can accelerate movement from the impossible to possible. ~Bradley Davis

Nearly seven months have passed since I last ran without the gift of sight. Special forces were at work the day I covered 13.1 miles in the dark at Charlotte’s Thunder Road Half Marathon. They were, and will always be, the most important miles of my life.

But while there won’t be another Thunder Road – at least not like that – some small part of me always knew the blindfold hadn’t served its last mission. Today is National Running Day. On this day last year, I took my first steps as a blind runner. Twelve months later, we’re closer to our goal, but Batten disease continues to steal the lives of kids whose voices I’ve heard and hands I’ve held. It’s winning the battle for my sister. That’s why tonight, I met my friend and guide, Andrew Swistak. I pulled down the blindfold, took one end of a short bungee cord and ran into darkness.

For days, I’ve wondered if blind running would be anything like riding a bike. After all this time, would it be like starting from scratch? Would I run into Andrew’s path or sprain my ankle on a manhole cover or speed bump – simple irregularities the sighted world doesn’t notice, but dangerous obstacles to people like my sister?

It’s not quite like riding a bike, but we fell into an easy rhythm and even had a conversation as we ran. We didn’t take any chances, stopping to walk over the curb that claimed my ankle on this day last year. We headed for the middle school track where I first squeezed my eyes shut and ran forward on a wing and a prayer. There, Andrew took both ends of the bungee cord, and I ran untethered, as I did several times during the race. On the straightaways, we gathered speed, reaching a low to mid-7:00/mile pace. I remember thinking how important it was to have Andrew as my eyes when he gave me the signal to turn. I felt so light – so free – in those moments of running untethered that I would have gone on forever.

We stopped when we reached the 3.1-mile mark, appropriate considering that the 5K was Taylor’s distance. Tonight wasn’t a race, but I still asked Andrew about our splits and overall time. We ran it in 26:50, good for about an 8:38/mile pace despite the stops and walks for safety.

Even throughout our training runs last year, I always had to remind myself that it wasn’t about speed. It was about getting the story out there; it was about finishing the race; it was about something bigger than either of us.

But while none of my runs – blind or sighted – are really about speed – the fight against Batten disease is. Because with every day and week and month, with every year that passes, we have to say goodbye to more kids. I’m not ready to say goodbye to my sister. I’ll never be ready to say goodbye to her. I know that a 6:00/mile won’t get us anywhere more quickly than an 8:00/mile. If I don’t get a great time in my next race, I’ll be okay with that. But I’m not going to let Batten disease kick my ass in the race that matters.

After Thunder Road

Published: June 4, 2014 ~ 4

By Laura Edwards

635205790014799504 2 Almost seven months ago, I ran the biggest race of my life. When I crossed the finish line at Charlotte’s Thunder Road Half Marathon and removed my blindfold to fall into my mom’s waiting arms, I knew I’d never feel that way again.

But that didn’t mean I was ready to quit running or fighting. After all, Batten disease hasn’t quit. It’s still doing its dirty work. My sister still suffers, and children still die. We still don’t have a treatment for Batten disease. We still have 350 million people fighting one of 7,000 rare diseases. We still don’t have an FDA-approved treatment for 95 percent of those diseases.

In the seven months that have passed since I hurdled the timing mats under the giant ‘FINISH’ banner as my guide, Andrew, yelled “Jump!” and then “Jump!” again, I’ve thought long and hard about the answer to one simple question: “What next?” While many of our friends talked about the next blind run before the tears we cried at Thunder Road were dry, I always knew in my heart that there would never be another Thunder Road – at least not like it was on November 16, 2013. That day was its own moment in time. No one can take it away from us, and it can’t be replicated.

During my months of training to become a blind runner and far more so in the months following the race, my sister slipped farther down the chasm of Batten disease. It is a deep, dark chasm. There are no footholds for climbing out, and some days, no light reaches her ledge. And yet, each day she teaches me something new about courage; each day, she imparts some great piece of wisdom without having to say anything at all.

Seven weeks before the diagnosis, Taylor and our cousin, Morgan, hung Hawaiian leis around their necks and chased fireflies across the grass, their bare shoulders bathed in the soft moonlight and their laughter in our ears. That night, Taylor told me she wanted to go to Hawaii. We never made it to Hawaii, and in November, my sister couldn’t come to the finish line at Thunder Road. Travel isn’t really in the cards for her now. She won’t see the world or experience all of its wonders. But the world will lose more when it loses Taylor.

Taylor can’t travel, but I can. And I vowed to run – and fight – for her until my body gives out or we beat Batten disease, whichever happens first. So this summer, I’ll begin a quest to run a race for my sister in all 50 states. Everywhere I go, I’ll take her story with me.

I have a pretty good race lined up to kick things off, but I’m not sharing details just yet. Stick with me for a few more (thousand) miles. 4Taylor. We’re going to write the happy ending to this tale.

Today is National Running Day, and I’m inviting you and your friends and family – runners and non-runners – to run for Taylor, too. Run a mile or two or 20; run fast or slow; run wherever you’d like; the how and the where aren’t important. Just remember that once upon a time, my blind sister looked Batten disease in the eye, said, “You can’t stop me,” and ran a 5K race. Twice. That’s how my sister lives her life. That’s how I try to live mine.

If you run for Taylor today, I want to hear about it! Leave a comment here, or share your story with Taylor’s Tale on Facebook or Twitter.

National Running Day, a Nod to the Past, and a Glimpse of the Future

Published: June 1, 2014 ~ 0

By Laura Edwards

National Running Day, held annually on the first Wednesday in June, is a national celebration of running. Since 2009, runners everywhere have marked the day by celebrating their passion for the sport.

In the final hours of National Running Day last year, I jogged to a middle school track under an inky, starless sky. There, on the asphalt oval worn smooth by the pounding of thousands of adolescent-sized shoes, I took one end of a short bungee cord in the palm of my hand and squeezed my eyes shut; led by the voice of my friend and guide, Andrew Swistak, I began my initiation as a blind runner.

I ran in darkness eighteen times prior to taking on the biggest race of my life, Charlotte’s Thunder Road Half Marathon, on November 16, 2013. Nothing about my training or the race ever came easily, but I said then, and still feel today, that the near-two hours I spent on that course embodied the most incredible experience of my entire life, something that can never be repeated or recaptured.

Shortly after the race ended, everyone asked, “What next?” We accomplished almost everything we set out to do. We raised money for the fight against Batten disease. We had one of the largest teams at Charlotte’s biggest race. We achieved local, state and national media coverage including the cover story in North Carolina’s Endurance Magazine and a nod in Runner’s World magazine. In fact, as I reflected on the race in the hours and days after I hurdled the timing mats at the finish line and buried my face in my mom’s shoulder to cry, I realized that I had just one regret: my sister, Taylor – the inspiration for it all – had declined so much during my months of learning to run 13.1 miles without the gift of sight that she wasn’t well enough to come to the finish line.

And so, as the monster called Batten disease continues to rob bits and pieces of my sister and the lives of children like her, whose hearts hold great love and whose lives once held great possibility, I continue to fight. When people asked me when I’d run another race blindfolded, I said there wouldn’t be another blindfolded race. I can’t reproduce the singular magic of what happened that day, and I won’t try.

But this Wednesday, to celebrate National Running Day and my sister’s courage that still shines like the bright beacon in a storm, I’ll don the blindfold one more time; Andrew will lead me as I run into darkness, and the future.

I’m inviting you and your friends and family – runners and non-runners – to run for Taylor, too. Run a mile or two or 20; run fast or slow; run wherever you’d like; the how and the where aren’t important. Just remember that once upon a time, my blind sister looked Batten disease in the eye, said, “You can’t stop me,” and ran a 5K race. Twice. That’s how my sister lives her life. That’s how I try to live mine.

As for the future…I may be running Thunder Road with my own two eyes this fall, but I have some pretty special things in store. Check back later this week to learn about my next challenge. This fight’s not over. Not even close.

If you run for Taylor on National Running Day, I want to hear about it! Leave a comment here, or share your story with Taylor’s Tale on Facebook or Twitter.

A Full Life

Published: May 27, 2014 ~ 2

By Laura Edwards

I worked for one of our local hospitals for eight years. But when I walked through its revolving front door today and took a right down the main hallway, I saw and heard the world inside through different eyes and ears.

When the elevator doors opened on the fourth floor, I turned to the left just as my dad approached me. He had on a suit, but his jacket and tie were missing, and his collar was loose. Without saying a word, he led me into my grandmother’s room, where she was locked in twisted slumber.

The compact room’s mint green walls made the room feel smaller. An ancient Zenith TV hung in the corner, its screen dark. I wondered what my grandmother would watch if she could still follow a story.

Rays of early afternoon sunlight slanted through half-drawn blinds and found an open booklet on the table. A black and white diagram indicated exactly where the stroke occurred.

Her once porcelain skin looked pale. Her white hair, always permed even in the years since she moved to the memory care center, sat limp.

As I stood near the end of the bed and watched the warm sunlight play on the sterile hospital equipment, my thoughts drifted to a trip to New York City with my grandparents in the summer of 1990. We stayed at the Hilton, where the housekeeper placed my stuffed dog, Brownie, on the pillow on my rollaway cot every morning. We ate chocolate mousse at La Cote Basque and cheese omelets at Mme. Romaine de Lyon. We took a limousine to FAO Schwartz and the ferry to the Statue of Liberty. We stood on top of the World Trade Center, and I thought we were on top of the world.

I wanted to tell her that story, but when I opened my mouth, nothing happened. Instead, I thought about how much I hate brain disease; how much it steals; how much more I would have done when she still knew my name, had I known.

In that same instance, I considered the full life my grandmother lived; the education she received; the things she achieved; the places and things she saw; the children and grandchildren she had. And I thought about how Batten disease is robbing my sister, Taylor, of all of those things; how we have a lifetime of memories with my grandmother, but when it comes to my little sister, Batten disease is stealing those, too.

Confessions from Laurel Hill

Published: April 26, 2014 ~ 5

By Laura Edwards

Today, I joined 6,200 other runners for the seventh annual Tar Heel 10 Miler in Chapel Hill.

John and I jogged from the Carolina Inn to the bell tower on the campus of my alma mater, the University of North Carolina (UNC); we met Steve Gray, our friend and a UNC gene therapy expert whose work makes me believe, just as the morning light touched the towering pines and the dew-kissed pink and white azaleas.

I’ve battled various injuries since early March, including a mysterious ankle problem for the past week, that have limited my training; I ran just 25 miles in April prior to today’s race, less than an average week for me in 2013. I didn’t know what to expect from this race, my fifth consecutive entry in the Tar Heel 10 Miler. Butterflies wrecked my insides as we waited to begin. But no matter what, I start every race with the intent to run faster than I’ve ever run before. One month ago, I ran the Charlotte 10 Miler in 1:17:49, a 7:46/mile pace. So after Steve and I saw John off for the four-mile run, I wished Steve good luck and found my way to the 7:30/mile pace group.

I got off to a quick start and stayed with my pace group for most of the race. But around mile six, I began to feel winded. I wondered whether I’d started too quickly.

As I hit a long downhill stretch close to mile seven and eased up to save my quads, I thought about my family at home in Charlotte. My parents and Taylor started the 150-mile trek to Chapel Hill on Friday evening, because they wanted to be there for me today. But when you’re fighting Batten disease, a lot can happen in 150 miles.

My family never made it to Chapel Hill last night; Taylor got sick around Greensboro, and they had to turn around and go home.

I hate Batten disease.

I know the Tar Heel 10 Miler course almost as well as my own neighborhood, but Laurel Hill always sneaks up on me. Laurel Hill, the 200-foot vertical gain that spans just under one mile near the end of the race, is a personal record (PR) killer. A lot of people walk it. Though I’ve come close to speed-walking the tough stretch, I always find a way to power through the hill (actually a series of consecutive hills). Last year, I ran Laurel Hill in 7:18.

But as I began the first steep climb, I felt a deep burn in my legs and my chest. I fought through the urge to slow to a crawl.

When I crested the first hill, I came upon a small crowd of supporters clustered at the top. Keep going, they said; keep pushing; you’re almost done. In the middle stood a woman clutching a poster that read, “Don’t stop believing.”

At that moment, it hit me: I’m going to lose my little sister, no matter how fast I run.

I’ll never know what quit on me – my legs or my heart. But there, under a canopy of trees and the bright, blue sky beyond, I walked for the first time ever in a race. And as I took long, deliberate strides toward the finish line, I cried behind my sunglasses.

I didn’t run my best race today, but I finished. The ghost of Laurel Hill behind me, I recovered to run the last mile in 7:18 with wet eyes. I floated through the stadium tunnel before sprinting onto the track for the final stretch, pummeling Batten disease every time my shoes pounded the rubber.

Though she proved too ill to travel to Chapel Hill, I felt my sister’s presence when I crossed that finish line at 1:24:11.

And I still believed.

What Matters

Published: March 31, 2014 ~ 0

By Laura Edwards

My husband and I live in a great neighborhood, and for the most part, we’re blessed with good neighbors. We bought our house eight years ago, and we’ve watched a few families come and go. We’ve grown close to some of them and liked just about all of them.

But there is this one family…

These neighbors – I’ll call them “Jack and Jill” because it’s Monday night and that’s about the extent of my creativity – don’t mow their lawn as often as they should during our North Carolina summers. They have interesting taste in landscaping. When they repainted their siding, they (inexplicably) skipped a couple of boards on one side. John and I started placing bets on whether or not they did it as a fashion statement. Their kids seem to multiply with reckless abandon (I really don’t know how many they have), which would be okay except that they don’t always watch them. Our house is perched on a hill, and we had bushes around our mailbox until a few years ago. Their oldest daughter invented a game in which she’d hide in the bushes and wait until I backed down the mountainous driveway, then jump into the path of my SUV at the very last second. I almost hit her a couple of times. Almost. This same daughter likes to crawl through the doggy door of my next-door neighbor’s garage when my neighbor’s away. Heck if I know what she does in there, but she can’t be up to anything good. They have dogs that would happily kill my dog, which would be my problem except for the fact that they routinely let their dogs escape, often while I’m walking my 13-pound dog down the street. And “Jack” is not allowed to borrow my husband’s tools. My husband owns every tool under the sun, and Jack borrowed one of them last year. John didn’t think it was possible to break this tool, but Jack proved him wrong – and didn’t say anything about it (even though it was obviously broken when he returned it). So he lost tool-borrowing privileges. Needless to say, there are days when I wish Jack and Jill would roll down the hill.

Spring is in the air, and I celebrated by going for a run when I got home from the office tonight. Later, on my cool-down lap, I passed Jack and Jill’s house and heard voices and laughter in the backyard. Without meaning to spy, my eyes flicked toward the house, and I saw the source of the noise: there was Jack, playing with his girls on their trampoline. One of them said, “Again, Daddy!” and he took her hands in his, and they jumped for the heavens, and her squeals pierced the scene lit by sunset.

As I set off for home, I thought about how much my dad would give to jump on a trampoline with my sister Taylor, who, thanks to Batten disease, can no longer jump or dance or run or sing. I thought about how blessed my brother, Stephen, and I am to have had so many incredible years with our dad, from sleep-away camps with the Y Guides and Boy Scouts to Charlotte Hornets games and fishing on the golf course and swimming in the ocean and all of our soccer and lacrosse games. And as the laughter of those girls faded into the night, I forgave Jack for his weird taste in landscaping and a couple of unpainted boards.

How to Fly

Published: March 23, 2014 ~ 4

By Laura Edwards

I’ve been an athlete for 20-plus years and still have blue ribbons won for the 50-yard dash at my elementary school’s field day (my house may look spotless at first glance, but behind the closet doors, I’m really a packrat). But I didn’t enter my first road race until the year I turned 24, a few months after Taylor’s Batten disease diagnosis.

As has been my track record of late, I did (almost) everything wrong leading up to this morning’s Charlotte 10 Miler. I strained my calf on a long run on the first Sunday in March, and the injury put me out of commission for almost two weeks. I eased back into running (the only thing I did right), and my longest run leading up to the race was a whopping three miles at a 10:00/mile pace. I got a nasty head cold this week and popped Mucinex D like candy all weekend. I went to bed after 1 a.m. the night before the race and grabbed a solid four hours of sleep before my alarm sounded this morning.

But when I got to the race parking lot, I felt good. The weather couldn’t have been better. The forecast called for rain by mid-morning, but at that early hour, the sky was streaked with fire as the sun stretched and yawned low in the sky. I followed my friend Andrew’s advice to take a few warmup laps in an attempt to break my string of slow starts.

I shot out of the starting area, and for the first mile, I kept up with the race leaders. I felt bad when Théoden Janes, the Charlotte Observer’s pop culture reporter who also writes about running and has a popular Facebook page called Run with Théoden, passed me, but then I reminded myself that he qualified for Boston and has a personal running coach. I kept a steady pace; after three miles, I realized I’d just broken my PR for the 5K distance – and I still had a lot of gas left in the tank.

Andrew, who guided me to the finish line when I ran Charlotte’s Thunder Road Half Marathon blindfolded for Taylor in November, was waiting with a cup of water and a dose of encouragement at the mile four water stop. I coasted through and kept going, my pace still holding steady.

It wasn’t until mile eight that I lost time. I entered a neighborhood with two consecutive hills that, today at least, made the Tar Heel 10 Miler’s famous Laurel Hill feel like a molehill. My legs and my lungs burned. As I rounded the first corner and came to the second hill, I said aloud, “You. Will. Not. Walk.” I envisioned my sister, at home, fighting with every bone in her body. And I didn’t walk.

Charlotte 10 Miler finish

Andrew found me on the last mile. He reminded me how close I was to breaking my PR, but I already knew. I smiled at my friend and guide, and I kept running.

That’s when my little sister jogged up beside me on legs that, once upon a time, ran two 5Ks. She turned to me and said, in a voice lost to Batten disease, “You remember how to fly.”

Less than half a mile later, I sprinted into the final stretch and across the finish line for my best-ever 10-miler time by two full minutes: 1:17:49 (7:46/mile pace), good for 60th overall and second in my age group. Robbed of my regular aerobic capacity by all of the junk in my system from the head cold, I gasped for air as I bent to my knees just past the finish line. My husband and my dad, there to watch me finish, asked if I was okay.

“I’m okay,” I said. “I’ve just never run that fast before.”

As I limped out of the finish area with my first race medal of 2014 around my neck, I thought for a second, maybe that’s as fast as I can go.

end of Charlotte 10 Miler

But I know it’s not. And I know that when I lace up my shoes for the next race in less than a month, I’ll try to beat myself again.

Some days, when our fight against Batten disease gets really tough, I think that maybe we’ll get to a point where we’ve done all we can do.

But deep in my soul, I know that point doesn’t exist.

Because regardless of how our story ends, there will ALWAYS be another Taylor. There will always be another family like ours. So no matter how many hills I have to climb, no matter how much my muscles ache and my lungs burn, and even if I have to finish this race alone, I’ll be damned if I’m going to come this far only to stop short of the finish line.

Time Machine

Published: March 22, 2014 ~ 4

By Laura Edwards

Tomorrow morning, I’ll run the Charlotte 10 Miler in Taylor’s honor. Always afraid I’ll forget something important, I took a few minutes to lay everything out on my bed this afternoon.

Tomorrow is March 23, the fourth day of spring. But the date printed on my race bib is 2/22/2014. That’s because a good bit of the 10-mile course is on a greenway, and the greenway flooded in February, forcing organizers to postpone Charlotte’s only 10-mile race.

In any case, I’m around for the redo, and at 7:45 a.m., I’ll set out to improve my time for the third straight year (in 2013, I finished 27th overall with a time of 1:22, two minutes off my PR). I’ll try to do it in the shirt and compression sleeve I wore when I ran 13.1 miles in the dark for my sister at Charlotte’s Thunder Road Half Marathon in November. If it’s raining, I may lace up the shoes that carried me to that memorable finish, though the soles have reached “retired” status.

One funny side effect of the postponement is that I celebrated a birthday in the month that transpired since the original race date, meaning my actual age doesn’t match the age listed in official race records. I smiled when I noticed that small detail today; if anything, it just adds to the whole time machine feel of my first race of 2014.

I know a lot of people who’d give their right arm for a time machine. I have a lot of things to love about the present, but I’d be lying if I said I wouldn’t give just about anything if Taylor and I could just be sisters for a single day. She’ll be 16 in August. I should be giving her advice about boys, helping her with homework, cheering for her at games, etc. and inviting her to spend the night with me. When John and I bought our house, I decorated the upstairs guest room for my little sister. She was diagnosed with Batten disease less than five months later, and though we had a few sleepovers in the early days, she developed a fear of sleeping alone because of her declining vision. Taylor’s never spent a single night in that room.

I envy the women who have “good” relationships with their sisters. I know Taylor loves me, and I’d walk through fire for her. But suffice it to say that our sisterhood hasn’t materialized in quite the way I imagined. And these days, I don’t even pine for the “big” things so much anymore – all of the things Taylor deserves that Batten disease stole from her. These days, I’d give anything to have a conversation with my little sister. We’ll never have that again.

Tomorrow morning, it’ll be chilly and possibly wet when I put on my purple duds, lace up my shoes and run a 10-mile race for Taylor. I wish she could be at the finish line when I cross, but I know she can’t. And that’s exactly why I’ll never, ever stop running for her.

What’s Next?

Published: March 16, 2014 ~ 4

By Laura Edwards

I (almost) never buy race photos. They catch me at my worst moments. When I look at the proofs, I think, “When did I make THAT face?”

But I not only bought this one-I blew it up to 16″ x 20″ and paid to have it matted and framed. It captured a moment I’ll never forget and tells a story in a way no words ever could.

I’m blindfolded, but I’m not tethered to Andrew Swistak, my friend and guide. He’s finishing his own race, but he’s also watching the ground to make sure I don’t fall.

Steve Gray, my friend whose work at the UNC Gene Therapy Center could lead to a better future for kids like my sister, is tailing us and snapping another photo I’ll treasure forever.

And, best of all: can you find the crowd of purple-clad teens running down the 5k side on the left? They’re not racing-they’re chasing us. When I removed my blindfold after two hours in the dark and melted into my mom’s arms, they surrounded us in the finish area.

We had our Hollywood ending to five months of a lot of hard work and one dream – a big dream in its own right that, at the end of the day, is just another chapter of a long story in our very personal fight against Batten disease and the bigger fight for 350 million people suffering from a rare disease.

It would have been perfect if only my little sister had been well enough to come to the race that morning to share it with us. Just as the finish line picture tells a story, her absence from the hundreds of photos taken at Charlotte’s Thunder Road Marathon tells another story of the cruel reality of a disease with no known cure; a disease that marches on in a body that doesn’t have the tools to fight it, no matter how strong or brave the soul inside may be.

Today, a friend asked me if I think I’ll ever run Thunder Road, or any race, blindfolded again. Without hesitating, I said no. It’s not that I dread the thought of it or doubt my ability to do it, the willingness of Andrew or someone else to guide me or even the potential of a second run to have a positive impact. It’s none of those things.

I can’t explain it, but there was something magical about what happened at Thunder Road on November 16, 2013. I felt it when I ran beneath the canopy of trees on Charlotte’s Queens Road West, untethered yet never so sure of my surroundings. I felt it when we approached the corner crammed with Taylor’s Tale supporters less than a quarter of a mile from the end. I felt it as Andrew and I approached the finish line on the final stretch. I’d never felt that way in my life, and I’ll never get that feeling from a race again. But for as long as I live, I know that I’ll only have to remember those moments, and I’ll be transported back to the day my little sister, blind and suffering from a fatal disease, gave me the courage to run 13.1 miles in the dark.

There won’t be another experience like Thunder Road. But I’m not done fighting this fight, in running shoes or otherwise. Far from it.

Do you have an idea for my next chapter in the fight against rare disease? Let me know in the comments. Meanwhile, I’m gearing up for next weekend’s Charlotte 10 Miler (rescheduled after flooding on the greenway in February), my first race of 2014. I won’t be in a blindfold, but I’ll be dressed in purple for Taylor.