I May Have to Crawl…

By Laura Edwards

ankle icingBecause 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.

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!


Someone has to Run for T

By Laura Edwards

I run races year-round. Twenty years on the soccer field did a lot of damage, and I deal with injuries all the time. But on Nov. 16, I’ll run the most important race of my life, and I’m not taking any chances. Early that morning, I’ll pull a blindfold over my eyes and honor the five-year anniversary of my little sister’s first 5K at Charlotte’s Thunder Road Half Marathon. So this morning – the start of my third day with an obvious limp – I took my balky ankle to see my sports medicine doctor for an exam and X-rays.

The good news is that I don’t have any broken bones, and the weird stuff my doctor saw was already there on an X-ray from 2010 (which doesn’t say much for my long-term joint health but bodes well, I suppose, for THIS race). I went home with a prescription for two weeks’ off from weight-bearing activities, running included, and frequent icing.

I’m one of the world’s worst patients, because I can’t stand to sit still. But this time, I’ll listen. I’m on a mission, and I won’t do anything to threaten it.

After my appointment, I sent a message to my mom, who has never run a race of any distance but will run the Thunder Road 5K for Taylor’s Tale. I promised to coach her to her goal of running 3.1 miles this fall, and in my message, I offered to meet her at the indoor track tonight to lift weights and provide instruction from the sideline.

Nine minutes later, she responded:

“On the treadmill right now. Someone has to run for T!”

Mom on treadmill

What does a go-getter like my mom need with a gimpy coach like me, anyway? Sans instruction, Mom logged 30 minutes on the treadmill, alternating two minutes of walking with three minutes of running at 5.2 miles per hour. One week ago tonight, Mom ran for the first time; as she took her first strides, she told me she didn’t know if she could run 3.1 miles without stopping. When she hits the open road on race day and breathes in the clear, cool November air, she won’t remember saying those words.

Besides, she didn’t really mean them. Because she’s my mom. And my mom ALWAYS believes.

I believe, too. I believe in my mom; I believe that my ankle will heal; I believe in Taylor’s courage; I believe that we can achieve our dream.

You can join my mom, my sighted guide and me on the Taylor’s Tale team at the Thunder Road races on Nov. 16. Scroll down to learn how, and stay tuned for more details!

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!


When to Fold a Hand

By Laura Edwards

In case you haven’t heard, I’ll run Charlotte’s Thunder Road Half Marathon blindfolded to honor my sister and support the fight against Batten disease and other rare diseases on Nov. 16. I’m a seasoned runner with a drawer full of half marathon and 10-miler race medals. But I’ve never run a race of any distance without my vision, so my training for this race is unlike anything I’ve ever done before.

I returned from a long weekend in the North Carolina mountains this afternoon and made plans for a late-night run with Andrew Swistak, a good friend and my sighted guide for Thunder Road.

But just an hour after I messaged Andrew, I aggravated the still-weak ankle I injured on our first training run, all the way back on June 5. I don’t have any idea how I hurt it; I felt a sharp pain walking from my back door to my kitchen. In any case, I’ll be brushing up on my R.I.C.E. skills (rest-ice-compression-elevation) right about the time that Andrew and I would have met at my mailbox for blindfolded run number eight.

I’m frustrated about this latest setback, which may end up being nothing more than a one-day punishment – perhaps my body’s gentle way of telling me that I wore the wrong shoes to traipse around downtown Asheville, NC for two days. I’m sorry I won’t squeeze in a practice run tonight but am grateful, really, that logic won out in the end. Because the last thing I need is an injury I can’t overcome.

My sister’s fight against Batten disease has its ups and downs, too. She has good days and bad days. She has a heck of a lot of courage – far more than I’ll ever have – but even so, some days, the disease still gets the best of her. For her sake, we have to know when to fight back with everything we’ve got, and when it makes sense to fold a hand so we don’t lose all our chips in the end.

I might be taking tonight off, but I’ll drag my body – bum ankle and all – back out on the road as soon as I can. And I’ll cross that finish line for Taylor on race day, even if I have to crawl. You’d better believe I’ll fight for my dream – to save the lives of people like her – until we win.

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 Leg to Stand On

By Laura Edwards

On June 5, I began training for Charlotte’s Thunder Road Half Marathon with a good friend, Andrew Swistak. Andrew and I could both run a half marathon tomorrow, but on Nov. 16, I’ll run 13.1 miles blindfolded in honor of my little sister, Taylor, who suffers from Batten disease. If you’ve been following my blog for the past month, you know that I twisted my ankle the first time I ran in the dark and that I re-injured it hiking in the mountains of North Carolina eight days ago. The ligaments in my ankles are like old rubber bands, and my worst fear came true not more than 30 minutes after I told Andrew I wanted to give darkness a trial run.

Brooks shoes

But for eight days, I behaved. I swore off running, instead heading to my local YMCA to do free weights and crunches. I stuck a box of extra stroke symposium invitations under my desk at my hospital marketing and PR job, kicked off my shoes and propped up my bum ankle. I sported an ACE bandage, a fabulous summer accessory, and iced several times a day. And when I got home tonight, I said hello to my running shoes. “Oh, how I’ve missed you. Do you have room for a brace in there? We have some catching up to do.”

As I glanced at the clouds dotting the sky, checked the late-night forecast one last time and changed into my neon-colored running shirt, I thought about how my sister, Taylor, can’t beat the symptoms of Batten disease in eight days’ time. I thought about how I trashed my ankles playing soccer because of choices I made, not because of predetermined information in my genes. I thought about how I have wet spaghetti noodles for ankle ligaments, and yet I can still lace up the best hiking boots money can buy, dig my poles into the earth and hike 17 miles round-trip in a day, seeing some of God’s greatest wonders along the way. Taylor can’t hike, and she can’t see. Batten disease ripped my heart out the day I learned its name, but it’s stolen so much more from my sister.

Batten disease wants to steal Taylor’s life. But it hasn’t succeeded yet. Every day, my sister wakes up in her world of darkness, and she finds a reason to smile. I call that courage. Tonight, I’ll summon some of her strength when I wrap my injured ankle and set out into the darkness for blindfolded run number six. And for as long as I’ve got a leg to stand on, I’ll run for her.

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.


Taking Risks

By Laura Edwards

Training run number five got off to a late start last night, because my sighted guide, Andrew Swistak, and I both wanted to watch aerialist Nik Wallenda attempt his tightrope walk across a gorge near the Grand Canyon.

Nik Wallenda and his family of aerialists, acrobats and daredevils are famous because of the risks they take and the feats they attempt in order to entertain an audience.

I remember how my stomach dropped when I saw people scrambling like ants on a log up the razor-thin switchbacks to Angel’s Landing in Utah’s Zion Canyon on a hiking trip in 2009. I know I’ll never try anything even close to the performances that are ordinary for someone like Nik Wallenda.

photo (1)But every time I pull a blindfold over my eyes and join my sister in her world of darkness, I take a risk to gain an audience and honor my sister. I realize that the two situations are not the same. I know I’m not risking my life. I’m never alone, and Andrew was born to lead the blind on the run. But all of the radiology imaging tests and physical exams from over the years don’t lie, and in case I dare forget, the auditory popping of my ankles serves as a daily reminder. Soccer – my first love – shredded the ligaments in my ankles, and I’m running on flat tires. So when I mistimed a curb jump and felt my left ankle go left, then right, then left again the first time I ran blind, on June 5, I suffered a setback.

Soccer’s taken me down this road before, though. As I joked to someone today, I didn’t have a clue what to do when I injured my Achilles tendon in 2011, but I can medicate and elevate and ice and tape an ankle like a pro. Andrew and I can cut our runs short, as we did last night (we logged just 2.61 miles after watching a teary Nik Wallenda twinkle-step the last few feet of his journey). And if all else fails, we can succumb to my ankle and take a short break. We’ve accomplished more in five runs together than I ever dreamed possible.

And like I’ve said before – no matter what happens, when race day arrives, we’ll be ready.

Because it’s for Taylor.

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.