How My Blind Sister Taught Me to See

Some days are so unforgettable, so moving, that we live them over and over again, immersed in the moment, for the rest of our lives.

Yesterday was one of those days.

On Friday, October 13, 2017, I accomplished something I’d never dreamed I could do until this year: I delivered a TED talk. After all, public speaking terrified me for most of my life. I hated the spotlight, more content scribbling sketches and stories with a No. 2 pencil in my treehouse than giving a class presentation or speaking up in a group. In fact, the soccer field was the only place I really felt comfortable using my voice, and even that confidence didn’t come till halfway through high school.

But Batten disease changed me, though not as much as it changed my sister. While my once healthy, vibrant sibling lost her vision and her voice and her legs, I channeled her courage and tried to use it for good. Taylor’s unshakeable strength in the face of all that loss stopped me short of feeling sorry for myself. It drove me to do what little I could to make the world a better place for people like her. For families like ours.

It’s never been easy. In fact, I almost walked away five years ago, around the time I realized the progress I’d helped achieve in my own small way had come years too late to save my sister. I was sick of trying to convince people to care. Sick of grappling with broken websites and broken promises on top of my own broken heart.

I spent a lot of time feeling angry about the reality of our situation. When I felt angry, I ran, sometimes blinking back hot tears as my ruined feet and fat raindrops took turns pounding the pavement in a raging, twisted kind of symphony. But one night on one of those runs, the skies cleared and my mind cleared, too. In that moment, with what felt like an epiphany, I understood what I had to do next.

Later that year, after five months of training, I ran a half marathon blindfolded. I don’t think I realized just how much that experience would change my own life until after I crossed the finish line. Running blind taught me to see the world from a different angle. It helped me see the opportunity in a painfully real, painfully personal tragedy. It restored my will to fight Batten disease for future Taylors. It restored my will to live.

A few years after that race, I wrote a book, and my life changed again. Writing Run to the Light didn’t just solidify my rediscovered sense of belief. Writing Run to the Light gave me the gift of reliving experiences with my sister before she got really sick – experiences that survived only in my memory.

Yesterday, I shared the soul of that book (due to hit shelves exactly one year from now) and the gift of my sister’s life in a 15-minute talk at TEDxCharlotte.

Laura's TEDx talk

The best moment? Without a doubt, it was walking onto that stage. I was anxious (not nervous) for most of the day, my heart and stomach twisted into happy knots. But when Emcee Mike Watson said my name and I left the safety of the curtained backstage, I felt only hope and love and passion. Under those lights, I channeled Taylor’s quiet courage and fearless determination to make the most of a beautiful but brief life. Before I exited the stage, I knew my life had changed again.

TEDx Charlotte talk slide

I wasn’t smart enough or fast enough to save my sister’s life. But she saved mine, because she taught me how to see.

Thank you to my family and friends for supporting me on this journey. Thank you to all of my fellow speakers and the TEDxCharlotte team for an experience I’ll never forget. 

TEDxCharlotte speakers

The Importance of Failure

Success is not final, failure is not fatal: it is the courage to continue that counts.” ~Winston Churchill

Six weeks before Montana’s Missoula Half Marathon, I set a goal to run a sub-1:40 race in this, my 18th of 50 states. And over the next month-and-a-half, I trained to run 13.1 miles a whopping five minutes faster than my personal record (1:44) for the distance.

Almost all of the stars aligned for success. I put in the miles and blood and sweat on streets and trails and gym floors. And when the sun rose in Big Sky Country early on the morning of July 9, I thought I was ready.

My fitness? On the money.

Great weather? To my Southern skin, yes.

Fast course? Hell yes.

But none of that mattered.

Despite the fact that I’d whipped myself into maybe the best cardiovascular shape of my life at age 35, the simple truth is that my legs just didn’t bring it that morning. Suddenly, after a couple of miles near my goal pace of 7:38/mile, they just did not. Want. To. Move.

To boot, I’d committed the cardinal mistake of changing something on race day. My new running shorts caused the worst chafing ever, so much so that the insides of my thighs were bleeding by the time I crossed the finish line at 1:50, a middling time even by my own standards.And instead of sticking around for the free beer after my TV interview with Missoula’s ABC Fox Montana, I dragged my husband to the closest drug store for Vaseline and extra-large Band-Aids.

Missoula Half Marathon time

I didn’t achieve my time goal in Missoula. But I learned a lot of lessons in six weeks of training and 110 minutes of running on race day, the most important of which was this:

Failure is important.

Failure keeps us from getting too comfortable. It keeps us from settling. It reminds us that we can always perform better and be better. And the work we put in to achieve a goal will always make us stronger, even if we fail.

When I was a high school freshman, I failed at two things I’d always done pretty well: school and soccer.

That fall, I made a C in English. When I asked the teacher why she gave me a C grade, she said I didn’t apply myself. That’s the last C I received; eight years later, I earned an English degree.

In the spring, I made the school’s varsity soccer team only to get cut late in the preseason. Getting cut made me hungry. Getting cut made me put longer hours into my game. Instead of sitting buried on the varsity bench, I became a leader on the younger JV squad. And I never got cut from another team again.

I graduated from the University of North Carolina in four years, but a lot of people don’t know that I spent the spring semester of my freshman year at North Carolina State University. I suffered depression from almost the moment I arrived on campus in Chapel Hill, and when I left school to move in with my grandparents in Raleigh after fall classes ended, I felt like a failure. But soon enough, I healed. I rekindled my confidence. I learned to believe in myself again. And the next academic year, I returned whole to a place I’d left broken. Sixteen years later, that experience is still one of the best things that ever happened to me.

Failure isn’t just important; it’s critical.

The best part of my failure in Missoula this month is that I really didn’t fail at all. While I’ve always been a good athlete, I’m not an elite athlete. In my 20-year soccer career, I never had a shot at making the World Cup team. And in my eight-year running career, I’ve done well to earn age group awards. If I’d made speed my primary goal, I might have hung up my running shoes a long time ago.

Instead, I run because my blind sister ran. I run because she can’t run or even walk today. I run because she’ll die young of a brain disease I could have easily inherited from our parents, but didn’t. I run because I can. I run for millions of other people, many of them children, fighting a rare disease. And none of them care about my time.

When I ran the Missoula Half Marathon, I missed my athletic goal by a long shot. But I achieved my other, more important goal in Montana: telling a great story. Today, more people know about Batten disease thanks to the media coverage I got in Missoula. Today or tomorrow or the next day, if even a single person who heard my sister’s amazing story joins the fight against Batten disease, I’ll gladly take 32 last-place finishes in my remaining 32 states.

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The Importance of Running a Fast Race

The Importance of Running a Fast Race

Today is Global Running Day. And in about four weeks, I’ll run my 20th half marathon in Missoula, Montana, where I’ll aim to break 1:40 for the first time.

I’ve only run sub-1:45 three times while battling injuries for the past seven years. But the Missoula Half Marathon is a flat, fast course, and I might be in the best shape of my life. When I entered my first 13.1-mile race on a cold December day in 2009, I could outrun almost anyone on a soccer field, but I didn’t know the first thing about training or pacing. And when I crossed the finish line in Charlotte at the 2:37 mark, I was gasping for air.

half marathon finish line 2009

Now, I’ll try to run the same distance almost a full hour more quickly, even though I’m eight years older and have picked up more than a few new battle scars.

I’m calling it Project 140.

half marathon training plan

I’ve always been a good athlete and played soccer for more than 20 years, but I’d never run a race when my little sister, Taylor, crossed the finish line of her first 5K in December 2008. She was already blind and in the early stages of a fatal brain disorder called Batten disease. She fell and skinned her knees a couple of times, and she and her guide took more than an hour to finish. But she finished. And when she did, she was smiling.
Taylor's 5K finish line

I’m an ordinary runner, so much like my sister’s on that 5K course a lifetime ago, my athletic performance on race day doesn’t mean anything to anyone else. But Taylor taught me that it’s important to push your own limits. And while running a sub-1:40 half marathon might not have a major impact on my own life or anyone else’s, the work I put in to get there will.

Running Blind

This isn’t the first time I’ve celebrated Global Running Day with a commitment to an audacious running goal. In 2013, I ran blind for the first time (to be fair, I wasn’t actually blind; I squeezed my eyes shut and, with my friend Andrew on the other end of a short bungee cord, got to know what it’s like to run in a dark world).

learning to run blind

Five months later, I ran the Thunder Road Half Marathon (now the Charlotte Half Marathon) while wearing a blindfold.

running blindfolded

Running in all 50 States

In 2014, I kicked off another running goal – to run a race in all 50 states for my sister.

I started with the 13-mile Crater Lake Rim Run in a remote part of Oregon two months later. Oregon marked the first of 50 states, but it was also the most beautiful, even more than Hawaii (my eighth). I still remember the smell of the coniferous forest and high-altitude Oregon air, and how the famous caldera lake changed colors as the sun climbed higher in the sky. I kept stopping to take pictures; I found myself wanting to remember certain moments of the race and scenes on the course. I took pictures because I didn’t trust my mind, racing with emotion, to capture it all. My time in that race – 2:17 – was by far my slowest since I’d started running half marathons. And I didn’t care.

Crater Lake

Running blind in 2013 changed my life forever. Running in all 50 states is life-changing, too. For normal humans, running a marathon isn’t really about speed. For most of us, running a long race is about physical and mental endurance and strategy and attitude. It’s about the experiences we have and the people we share them with along the way.

What’s Next

This journey is like a marathon, too. When I cross the finish line in Missoula next month, I’ll still have 32 states to go. And if I sprint the first 10K of this figurative race to 50, I won’t make it to the end.

I might not beat 1:40 on July 9. But until then, I’ll put in the miles on the track and the road and the trails and the stadium stairs. Each week, I’ll log an average of 29 miles in speed work and long runs and easy runs and tempo runs. I’ll pay my runner dues in time and blood and sweat and tears.

running in Baxter Village

I might not be able to make myself four minutes faster in four weeks. While my Project 140 is designed for speed, it’s not magical, and I’m still a mortal runner. But I’ll channel my sister’s courage the whole way. And for that, I’ll be stronger.

How I Overcame My Fear of Public Speaking

If you’re afraid of speaking in public, you’re not alone. In fact, Forbes contributor Nick Morgan says a whopping 10 percent of people enjoy public speaking. For the rest of us, talking in front of others induces hair-raising fear or butterflies or lost sleep or a general feeling that we’d rather be anywhere else.

For most of my life, I suffered from a genuine case of glossophobia, the medical term for a fear of public speaking. I knew most of the answers in class but didn’t dare raise my hand. I dreaded group presentations. I didn’t participate at youth group meetings. My fear extended to nonverbal activities, too. My hands shook on the piano keys during recitals in front of a room full of students and parents, even though I could play the pieces to perfection for the stern judges at music competitions. Early in my soccer career, I played so stiff on the field that the ball sometimes bounced off my foot, right to a defender.

Practice makes public speaking easier, but passion is even more important. I’ve spent most of the last 10 years telling parts of the same story, adding bits here and there to reflect our little organization’s ascension and my sister’s physical decline. I’ve spoken at large and small events, to groups of friends and complete strangers, on live radio and TV, from chilly hotel ballrooms in North Carolina to an emerald lawn overlooking Shipwreck Beach on Kauai.Charlottesville TV interview

I’m still a strong I on the Myers-Briggs scale, but as I once told a friend, Taylor helped me find my inner E. And this fall, I’ll do something I never imagined possible: I’ll deliver a talk on the TED stage.

In a lot of ways, I’m still the girl whose face turned beet red whenever a teacher called her name in class. But my sister taught me that it’s important to push your own limits. Now, I channel her strength, whether I’m pushing my body to run a fast race or write one more paragraph long after midnight or speak in front of 500 strangers. And when I step onto that stage this October to talk about my sister’s life and the impact of rare disease and strategies to fix it, I’ll take a piece of her with me.

TEDxCharlotte 2017 is Friday, October 13. Tickets go on sale in early June. I hope to see you there!