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.

I will run the Thunder Road Half Marathon blindfolded to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

Join the Taylor’s Tale team at Thunder Road! Click here to register for the marathon, half marathon or 5K. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” Run for us to help raise awareness on race day. Stay tuned for more details, including special shirts for team members and an informal post-race event!

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!

What I Learned in Healthcare

Published: September 27, 2013 ~ 6

By Laura Edwards

Today, I worked my last day for Novant Health, a large, not-for-profit organization focused on solving the toughest healthcare issues and making a difference in the lives of patients and their families. I learned a lot about medicine and marketing and working with doctors and leaders in my role on the company’s marketing and public relations team. After I said my tearful goodbyes to my teammates late this afternoon and pointed my car toward home, I thought about what I would say to a friend if he or she asked what I learned in my near-eight-year tenure. I know far more about open heart surgeries and concussion care than I ever expected to know working toward a degree in English and avoiding science classes like the plague. I can tell you all about radial catheterizations and transcranial Doppler testing to measure the velocity of blood flow in the brain’s blood vessels. All of that stuff’s cool, and it makes me sound way smarter than I really am. But if someone asked me what stands out most from my eight years with the hospital, I’d name these eight things:

HIPAA isn’t a large, plant-eating mammal with big teeth from sub-Saharan Africa, and if you work in healthcare communications, you’d better know what it is.

By Kabacchi (Hippopotamus – 04) [CC-BY-2.0 (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons

If you don’t like acronyms, pick another industry.
A lot of people working in healthcare are healthcare “lifers.” They enter the industry right after college/nursing/medical/technical school and never leave. They have their babies at their “office,” and their coworkers are their best friends. That’s unusual in today’s world, but it’s also really cool. I left healthcare when I drove away from my office today, but it will always be part of me, because working in healthcare is about more than what’s listed in your job description. I won’t write web copy or press releases or marketing plans for the hospital anymore, but working in healthcare changed my view of the patient-caregiver relationship and helped me see another side of the human condition. I’m no longer employed by Novant Health, but that stuff will be part of me forever.
If you work in healthcare, you get to work with some pretty cool people. But if you stick around long enough, you might get to meet some FAMOUS cool people.

Some of my colleagues and me with Michael Jordan at a commercial shoot

The patient is ALWAYS most important. Period.
There is ALWAYS a good story to tell. Sometimes, the best stories are the hardest to find, because the stars are so humble, they don’t realize the power of their actions. I had the opportunity to write for two books of remarkable stories my company published that won awards and gained widespread coverage. The stories didn’t tout our latest technologies or medical breakthroughs, but rather the “little” things special people did to change the lives of others just by being themselves. An administrative specialist for the heart failure program calls an elderly patient who lost his wife in recent years at the same time every Friday – and they talk about everything BUT heart failure; a licensed practical nurse at an inpatient behavioral health unit stocks her personal locker with a treasure trove of clothing and personal hygiene items to help create comfort and a sense of order for patients during their stay. The books are still the coolest projects of my career.
Be kind to people. Take the time to make eye contact. Smile and say hello. You never know what someone is facing. Walking down the main hallway of the hospital, I could pass scared parents on the way from the cafeteria to our children’s hospital to visit their son or daughter, or a man on the way to tell his wife goodbye for the last time.
Miracles happen every day.

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.

A Jackson Hole Half Marathon, and 60 Miles at High Altitude for Taylor

Published: September 15, 2013 ~ 2

By Laura Edwards

I haven’t gone on a blind run in three weeks, but I keep logging miles for Taylor. If you follow my blog, you know my ankles are trashed. And if you read this post from a couple of weeks ago, you’ll remember that I re-injured one of them trimming my roses. Yeah, trimming roses – not playing soccer or kicking butt in a race. That injury made me wonder, for the first time, whether or not I’d really make it to Nov. 16, the date of the Thunder Road Half Marathon, healthy enough to run 13.1 miles with a blindfold over my eyes.

I had a tough time limping up my mountainous driveway after the latest gardening injury, so logic would say I’d take a couple of weeks off from weight-bearing activity. But instead, I hopped on a plane bound for the Jackson Hole airport at 7:00 the very next morning. After a hasty connection in Salt Lake City and, with deepest apologies to my home state of North Carolina, the best pulled pork sandwich I’ve ever had in downtown Jackson, my husband and I set foot on our first trailhead in Grand Teton National Park by 2:15 p.m. MST. I laced up my ankle braces and my top-of-the-line boots, said a prayer to God, dug my poles into the Wyoming dirt and hiked my first 3.2 miles to and from sparkling Taggart Lake.

That night, I set up the two chairs on the porch of our cabin so they faced each other. I went to the laundry cabin for four large bags of ice, came back, plopped down in one of the chairs, put my ugly feet in the other, wrapped my ruined ankles in the bags of ice and stuck my nose in a book for 20 minutes to avoid the funny looks I imagined the resort’s other guests might be throwing my way.

The next day, I didn’t have any swelling, which in my twisted mind means that I’m fine, whether or not I have any pain (I did). So I told John a white lie and picked a trail that would take us past a couple of popular picture-taking spots near the gorgeous Jenny Lake, then beyond the crowds and deep into Cascade Canyon, all the way to Lake Solitude, for a 19-mile roundtrip hike.

The view at Inspiration Point, perched at 7,200 feet over the sapphire waters of Jenny Lake, is enough for most people, and they turn around. When we took a break there for a drink of water and a couple of SHOT Bloks, I could see why.

But I don’t like to stop with the rest of the crowd, and while Jenny Lake is the gem, Lake Solitude sounded like the place to be. So we continued on into Cascade Canyon.

Though I have the heart and lungs of a marathon runner, I have the ankles of a kid who played every minute of too many double-overtime soccer games when she should have been on injured reserve. My latest injuries – those of the blindfolded running and gardening variety – slowed me down, and as the Wyoming daylight faded, we realized we wouldn’t make it to our lake of solitude. So we turned around early, making our 19-mile hike a 13.1-mile hike. When we reached the car later, I told myself that Taylor would be proud of the miles we’d logged. And even though we didn’t achieve our goal, those miles were good enough for me.

We hiked our Jackson Hole half marathon for Taylor on just our second day out of nine full days in Wyoming. In fact, our “half marathon” didn’t even represent our toughest hike; that would be our journey to a point high above Amphitheater Lake in the Lupine Meadows area of Jackson Hole – a shorter hike at about 10.6 miles, but with an approximate 3,350-foot elevation gain over 5.3 miles to 10,000 feet above sea level.

In total, we hiked 60 miles. I dedicated all 60 to my sister. Some of the miles were easy. Some of them were hard. Because of my ankles, some of them were tougher than they had to be. But the rewards, from the wildlife we encountered to the sweeping views we enjoyed to the cleansing effect the mountains had on my soul, made every tough mile worth the effort.

That’s how I hope our fight against Batten disease will be, in the end. Some days it is. Some days we get amazing news or score an incredible (small) victory or witness something powerful in my sister that, like a gorgeous view or a long, invigorating drink of fresh, clean water, gives me strength for the next set of switchbacks up the mountain. Some days Batten disease knocks us down and kicks dirt in our face and rubs rocks in our wounds. There are more of those days. But the good days are so much more powerful that they overcome the bad, even though they’re outnumbered.

I called my parents one night while I was icing my ankles on the porch of our cabin in Jackson. Mom put Taylor on the phone, and I told her about the big bull moose John and I saw in the woods. I told her about his chocolate skin and his huge rack of antlers and how lazy he was, just sitting there chewing on grass in the trees while people took pictures of him. Mom told me that was the first time Taylor laughed all day.

I had so much fun describing that moose to my sister. But I wish she could join me on the trails so I could REALLY share my love of hiking with her. I loved coming up with ways to tell her about the moose, but I wish Taylor could experience things like that for herself.

While I took another trip of a lifetime, Taylor sat at home, waiting for her big sister to call and tell her about sights and sounds and experiences that she can only dream about.

That’s why I hate Batten disease.

That’s why I’ll never stop fighting.

Is it Important to have Dreams?

Published: September 7, 2013 ~ 2

By Laura Edwards

I devote a lot of words to talking about my dreams for my little sister, Taylor, and our fight against Batten disease. But I don’t spend a lot of time talking about her dreams.

Taylor can’t talk to me about her dreams anymore. I haven’t gotten an update in a couple of years. She used to want to be a pop star or a vet.

I wish Taylor could tell me what she dreams about now. To be a teacher? Or a doctor? To travel the world? To see again? To not be sick?

Taylor turned 15 last month. At 15, I wanted to earn a soccer scholarship and write books and draw for Disney. I wanted to explore the world. I wanted to have lifelong friends. I wanted my grandmother to live forever. I wanted to fall in love.

At 31, I’m still pretty athletic. I haven’t finished my first book, but I’m close. I didn’t end up drawing for Disney, but while I love to draw, I love to write more. I’ve been to amazing places. I still spend time with friends I met before I could drive, and I married my high school sweetheart. I have an incredible family. I lost my grandmother and other people close to me. I’ve learned that loss is a part of life, but I’ve lived a lot of my dreams.

I’ve lived a lot of my dreams, and it makes me crazy that monsters like Batten disease keep kids like Taylor from living theirs.

What were your dreams at 15? At 31? Did they change? Did you achieve all of them? If not, why? Is it important to have dreams?

I May Have to Crawl…

Published: September 2, 2013 ~ 3

By Laura Edwards

Because the ligaments in my ankles are like old rubber bands, I guess it’s only fitting that I twisted my ankle – again – during an activity that has nothing to do with running or sports. A couple of weeks ago, I sprained my right ankle running after dark, with a blindfold over my eyes (the ugly scab on my left knee in the photo is a souvenir from that fall). Today, I sprained my other ankle trimming my roses. I wore Adidas sandals down to the mailbox; I guess this means that I need to break out my ankle braces for gardening from now on.

My ankles (both of them) will be okay, like they always are. I’ll ditch running for the time being, like I did this afternoon, and the swelling will subside. The “nice” thing about having ankles like mine is that I don’t have much left to injure, so my recovery time is better than most. As for my long-term health, I try not to think about it too often.

I wouldn’t be in this position if not for a three-month period during my senior year of high school in the spring of 2000. That February, I sprained both of my ankles during preseason practice with my school’s soccer team. I should have taken time off from playing; instead, I went to the athletic training room every day at 2:30 for an ice bath and a double-layer tape job with athletic tape and moleskin, which went under orthopedic braces. I played in every practice and every game that season; once, I went to school on crutches, then took two ibuprofens, went to the trainer for my tape job and played all 100 minutes in a double-overtime win over our arch-rival.

It sounds crazy, but for an 18-year-old with a dream of playing at the next level, it made perfect sense at the time. And that spring, despite my injuries, I had more fun on the field than I’d ever had in all my years of playing soccer. I played with my best friends, the underclassmen looked up to me, and my coach saw enough in me to risk my long-term health for the good of the team. At least, that’s how I looked at it.

This isn’t a blog about soccer, and it isn’t a blog about my senior year of high school. But whenever I remember those days now, I think about how my sister, Taylor, has been robbed of similar experiences. Not the ankle injuries – I’ll keep those for her sake – but finding something she loves so much that she’d play through pain to avoid missing out on a single moment; end-of-season pizza parties and team sleepovers and out-of-town tournaments and long bus rides back from state playoff games; the joy of winning, the heartbreak of losing and the indescribable feeling of being part of something bigger than yourself.

That’s why I won’t let anything stop me from running for Taylor at Thunder Road. If my ankles don’t shape up, I may have to crawl. Without my vision, I may record the worst half marathon time of my life. But on Saturday, Nov. 16, I’m crossing that finish line blindfolded for my sister. I’ll never drop out of this race, and I’ll never stop fighting Batten disease for her.

The Way Sisters Do

Published: September 1, 2013 ~ 4

By Laura Edwards

John and I met my parents and Taylor, my brother and his girlfriend and my in-laws at one of our favorite Charlotte restaurants for dinner last night. We took up residence at one of the restaurant’s largest tables for close to two hours, ate way too much authentic Italian food and laughed just the right amount, though probably too much for the comfort of our immediate neighbors. We had a fun two hours.

Toward the end of the night, I pulled out my camera. I got some good-natured eye rolls, but I believe in capturing happiness.

I snapped a picture of my brother, Stephen, and his girlfriend, Jessica:

Then, I passed the camera to my mom so she could get a shot of my husband and me:

My mother-in-law just couldn’t get into the whole photography thing, but I made her smile for the camera anyway:

My dad hid at the end of the table, but I wouldn’t put the camera away without getting a picture of my mom and Taylor:

I haven’t talked to my sister in a long time. As I looked at her through my camera’s viewfinder, it occurred to me that she had not been part of any of our laughter or conversation over the past two hours. And I realized that I don’t know how she feels, what she wants or what she would say if we could chat the way sisters do. I lowered the camera for a split second, and in her beautiful eyes – eyes that used to see colors and shapes and smiles – I saw sadness and loss, but I also saw courage.

I’ll fight Batten disease for a long time – forever, if that’s what it takes. Taylor’s still fighting. Batten disease hasn’t taken my sister’s life yet. But Batten disease already stole my sister.