Uneven Ground

Published: July 14, 2013 ~ 0

By Laura Edwards

On Nov. 16, I’ll run the Thunder Road Half Marathon blindfolded to honor my little sister’s fight against Batten disease and raise money for gene therapy at the University of North Carolina. Since early June, I’ve gone on six training runs with my sighted guide, Andrew Swistak, and we made more progress in those first six runs than I ever dreamed possible.

But I haven’t run in darkness since July 1. I’ve been on vacation for a week, and our schedules don’t jive in the coming week. I’ll keep my fitness level; running is part of my life, whether or not I’m training for a race. But I’m not blind, and running without my eyes isn’t like riding a bike without training wheels. It takes practice. So I expect to be a little rusty the next time I pull a blindfold over my eyes and grab hold of my lifeline, a three-foot bungee cord.

I’ve been on the South Carolina coast for the past week, and I laced up my third-string Brooks Glycerin shoes – the ones that have about 800 miles on them – for a couple of runs on the beach. On a late afternoon run at low tide, I thought about my long stretch without any practice runs with Andrew and wondered if I could survive a near-deserted, flat area of the beach with my eyes closed.

I started my experiment on the part of the beach between the powdery dry sand that the waves never reach – ankle-breaking sand – and the damp sand that just hours before had been underwater. I scanned the beach ahead of me for tidal pools and child-dug holes, saw none, said a silent prayer and closed my eyes.

Ten seconds later, the surf filled my tired Brooks shoes. The tide didn’t change; I just veered off course by seven or eight feet in those 10 seconds.

I kept my eyes open the rest of the way.

My self-imposed lesson brought back a memory of a hot summer afternoon at the same beach six years ago. Taylor’s vision had already begun to fail her, but otherwise, she was still the happy, vibrant, healthy kid we knew.

Despite her vision loss, Taylor could run from our chairs to the ocean and back again, low tide or not. She had one hell of an internal compass, and she had no fear.

I’ve never been as fearless as my little sister. Even in that 10-second experiment on the same beach Taylor once ruled in summers that are now only a memory, I feared that I might re-injure my ankle or trip over a child running out of nowhere to chase a seagull or catch a wave.

Like it or not, those smooth, wide beaches are in our past. The path ahead is uneven ground. I’ll need at least an ounce of my sister’s courage to keep going. And whether I run one blindfolded race or one hundred, I’ll need to keep my eyes wide open for the real fight.

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.

The Sun Still Rises

Published: May 21, 2012 ~ 2

By Laura Edwards

My family just returned from a too-short vacation on the South Carolina coast. We shared three wonderful days throughout which the beauty of long walks at low tide, playing catch and eating hushpuppies and ice cream cones outshone the ugliness of Batten disease.

At the end of the third and final evening, after a good-natured but protracted Scrabble battle, we all sank into our beds much too late. Just a few hours later, in the dead of night, my mom’s cell phone rang. As we awakened one by one and struggled to comprehend the information the caller shared, our beautiful weekend dissolved.

We did not return to bed that night. Several hours later, I floated out to the balcony of our beachfront condo; my legs felt as though they were not my own. At the very moment in which I leaned on the railing and exhaled, a pinpoint of light appeared on the eastern horizon. I stood, transfixed, and watched as invisible hands lifted a glowing disc of fire into the blue-gray sky and chased the darkness away.

As beautiful as that sunrise was, I would have missed it 1,000 times for the chance to erase the event that precipitated that phone call. But the sun still rises, no matter what happens while it is away. Every morning, it arrives, regardless of the forecast. And I know that no matter how desperate our situation becomes as time goes on, I can’t ever stop believing in our ability to find beauty among all that ugliness.

There All Along

Published: July 25, 2009 ~ 0

By Laura Edwards

Today marks the third anniversary of T’s Batten disease diagnosis.

My family escaped to the South Carolina coast for a few fleeting days this week. We had perfect weather, but the cotton ball-dotted blue sky and soft breeze couldn’t mask the changes that have marked the past several years. My brother, a college senior-to-be, is taller and more serious than he was last summer. The beachfront condo we’ve inhabited for one or, if we’re lucky, several weeks each year since I was 6 years old, is a little more tired; the sea spray and SPF that rode the wind to the eighth floor and settled as a thick film on the balcony’s sliding glass doors to be discovered the night we arrived inspired Windex and paper towels, not weathered charm. My little sister’s post-brain surgery hair is more chestnut than golden. Her eyes are unseeing.

Yesterday, as I soaked up the sun’s rays and the pages of my open book fluttered in the breeze, I drifted away and recalled summers spent lying in the surf as the waves washed over me, imagining that I was shipwrecked. When I returned to the present and opened my eyes, I saw my sister, standing upright as the waves crashed over only her ankles and feet; my sister is on a drug therapy that suppresses her immune system, making ocean water too dangerous for whole days spent tummy-down in the wet sand.

When I was T’s age, I used to stand on the very same beach and wonder how many grains of sand made up the vast expanse that stretched all the way to the horizon in either direction. It wasn’t until later that I understood just why counting all of them could never be possible.

I won’t ever know how many grains of sand make up the beach I’ve walked for more than twenty years or even a shovelful. I know that some things are not possible.

After I snapped out of my shipwrecked daydream, Mom, T, and I walked along the inlet that carves out a crescent swath in the sand within sight of our sea spray and SPF-caked balcony doors. For a reason unknown, I remarked that mole crabs, or sand fleas, seemed to have disappeared from the beach in recent years. I described the animal to T and how Stephen and I used to scoop handfuls of them out of the sand below the tide line. I described their smooth gray shells and squirming legs that searched desperately for sand to burrow into even as you held them up in the air. But to help T understand sand fleas, I really needed to have one.

Without a live model, the subject changed to the inlet’s transformation and the apparent struggle of the beach’s newest construction to sell units. Some time later, after we’d turned back for home, I looked down and spotted two minuscule pockets of churning sand. I bent over and scooped up a handful of doubtless thousands of grains of wet sand; there, in my palm, were two sand fleas.

The Little Things

Published: March 20, 2009 ~ 0

By Laura Edwards

Taylor, Mom and I are on the South Carolina coast enjoying a few days’ respite.

I used to wonder if there were more Bargain Beachwears and cheesy Putt-Putts than grains of sand at this oceanic collection of high-rise condos and tourist traps. My grandfather loved this place because he was a golfer, and the Grand Strand is a golfer’s paradise. In a single day, you can play nine holes, eat lunch and dessert at Greg Norman’s restaurant, play the back nine and eat overpriced seafood at a different restaurant for dinner, no problem. My grandfather passed away one chilly weekend in early December when I was fifteen and playing in a soccer tournament in Athens, Georgia, but we still come down here. If we come by way of SC 9 (I call it “Back Road 9,” and not affectionately, either), we pass by Tony’s Restaurant, which serves great Italian fare and is not a chain like its neighbor, Carrabba’s. Granddaddy hated the smell of marinara sauce and wouldn’t have pizza or pasta in his house, even when my dad and his brothers and sister were growing up. But I love Italian, so every summer when we came down, Granddaddy would make a reservation for dinner at Tony’s one night. It was a little thing, but it made me feel special nonetheless.

We’ve been here almost 24 hours now, and the worries we left behind in Charlotte already feel a world away. We made it out to the beach late-morning and just sat watching the ocean with our toes in the cool sand for awhile. Then, we played catch until T announced that she was ready for lunch. She’s pretty good at catch – you just have to give her a heads up before you throw the ball and talk to her before she throws it back so she can locate you. When the girls went upstairs, I went for a run on my own. The people are more scattered this time of year, so the beach doesn’t resemble a mosh pit. I was able to find a good lane right above the water line, where the sand’s only slightly wet and not too soft, and after a few minutes, I turned off my iPod so I could listen to the waves and the occasional seagull. It was the most therapeutic run I’ve had in weeks.

Though I packed enough clothes to stay two weeks without ever doing a load of laundry, I forgot some key items – I always do – so after watching my Heels get a decisive win in the first round of the NCAA tournament sans ACC POY Ty Lawson (my mom, who doesn’t follow sports at all, now calls him “The Toe”), I decided to walk up to the CVS on the main road. Mom wanted to get a walk in, so we convinced T to tag along by promising that she could pick something out once we got there. We walked three abreast to the drugstore and perused the aisles, discussing the merits of Maybelline vs. L’Oreal mascara and ways to get my feet sandal-ready (soccer and running take a toll on my feet, which aren’t pretty to begin with). Meanwhile, T decided she needed a mirror for her purse and lip gloss. On the way home, we didn’t make it one block before T decided she just couldn’t wait to apply her new lip gloss, to which I pointed out to Mom that it was a good thing at least one of her girls turned out girly! The only thing I applied to my lips at age ten was Chapstick.

So here we are now, enjoying an excitement-free night in the condo. T’s retreated to her room to watch a DVD, Mom’s prepping for T’s upcoming school presentation on Helen Keller, and I’m glued to the TV for the night games (currently, I’m watching Clemson lose to Michigan). I realized a long time ago that I don’t need the kind of manufactured fun found in excess at North Myrtle Beach to, well, have fun. The last couple of years of our lives have only reinforced that.

I’ll always try to be honest here – so I’ll say that I live in constant fear of what tomorrow may bring (or rather, what Batten disease may bring tomorrow). So, just as countless others who, like me, dearly love someone who is facing a life-threatening disease, I have many things that I want to do with my sister, and I always feel as though I can’t do them quickly enough. My sister once said she wanted to go to Hawaii; I want to take her to Hawaii. She is a Disney fanatic; we took her to Disney World before she was diagnosed with Batten disease, when we still believed she was only losing her vision; she wants to see the Jonas Brothers on their world tour; I am disappointed that they are not coming to Charlotte. But what I have to remember – what all of us have to remember – is the joy we can extract from the simplest of activities, like our impromptu game of catch on the beach or our girls’ night at CVS. As much as I want T to have happy memories, I’m not convinced that we have to have countless so-called exciting adventures for that to be possible. I want her to remember the fun time we all shared at Disney World, but I also want her to remember – and I want to remember as well – the times we’ve spent snuggling on the couch or sharing an $11 cheese pizza, drinking Diet Cokes through straws and talking about boys and clothes, as we did when I took her on a “date” one night week before last. Even if we could afford all of the adventures, sometimes I just want to enjoy my sister’s presence without it being overshadowed by the experience or the landscape around us. My grandparents took me on an amazing trip to New York City when I was eight years old; we stayed in the Hilton, rode in a stretch limo all over Manhattan, went to fancy restaurants and museums and the World Trade Center and FAO Schwartz, but that trip is not what I remember most about my relationship with my Granddaddy Parks. No, what I remember the most is watching Winnie-the-Pooh together in the TV room just down the hall from where I sit now – and those dinners at Tony’s.