Throwback Thursday: Backpacking 2012

"Well, there's this fire tower... and I have this camping backpack... how much do you weigh?" I could see the wheels turning in Joe's mind, and I was torn between dreading the development of a very bad idea and tingling with the excitement of possibly the craziest adventure ever. I accepted the suggestion more as a dare than an invitation, and less than 24 hours later, I was stuffed in a backpack, ready to go. Joe, Anna, Hannah, and I held on for dear life as Todd drove us south, away from the city and into endless flat farmland of Indiana, racing the quickly setting sun to the horizon. In the purple glow of dusk we stared up at the 100-foot tower before us... Some of the details of our adventure were beautiful, some a bit terrifying, some hilarious, and many were powerful and deeply personal to me... my life will never be the same. 

When we got to the tower, we saw an obvious problem: there was an eight-foot high fence around it, topped with barbed wire, and it was locked. The guys told us girls to wait in the car, and they were going to scope out the situation. They walked over to the fence, and when they came back, I expected us to start the car again and drive back home. Instead, Todd grinned and said, "Good news! We're pretty sure the park ranger isn't coming back tonight." So what do we do? Well, we jumped the fence, of course! Despite what you might think, it was not all that easy. First, Joe tried to climb the fence with me on his back - and as I hung facedown five feet up in the air, I just knew he was going to fall and crush me and we would both die... this felt like the worst plan we'd ever imagined.

The team laid me in the grass on my back and circled the fence trying to find the best place to get over it, all the while anxiously keeping watch for the park ranger who might come by with some questions. The "plan" was, that if he did come, the rest of the team would run and hide, leaving me in the backpack on the ground, where I would claim, "I came alone!"

I started to say, "Hey guys, should we really go through with this?" I remember Todd standing over me with a very serious face, and he said, "Do you trust us?" I had to consider it. Of course, he and Joe are medical professionals, and Anna and Hannah have been my caregivers for a long time, so physically I'd say this is the most trust-worthy team ever. But beyond that, I really did trust them all. Ok, so now that that is settled, let's have an adventure.

Joe and Hannah jumped the fence, then Todd and Anna picked me up and set me on top of the fence (Joe put his jacket over the barbs to protect me). Then Todd jumped the fence with all the grace of Legolas the Elf, and they lowered me down the other side. And we're in!

Then they strapped me to Joe's back again, and he charged - CHARGED - up the tower! At the top, the team got me off his back before he could pass out, and transferred me to Todd's back. He walked around the top of the tower, showing me all sides of the flat Indiana view that went on forever, with a dim orange slit across the horizon where the sunlight still held on, while the stars were starting out come out in the darkening sky. We sang some songs and Joe read a Psalm, and then Todd took me back down the stairs - he walked backward so my feet could hang and not get caught on the steps.

As fun as it all was, none of us could fully relax because, of course, we still had to get back over the fence. And this is after we've gone up and down a very tall, very steep tower, and it's dark. I actually have a mental block about how we got back over, though I think it was similar to the way we got in. The only piece I remember vividly was when I was hanging over the outside of the fence, and Joe was holding onto the backpack by the top handle-strap with one hand, and the girls were standing under me with their arms outstretched, and Todd was frantically trying to get over the fence to catch me before I fell. That was the second time that night that I thought I would die... but I was totally ok with dying that way. It sure beats the idea of dying in a hospital bed.

Once we were safely on the other side, we all laid in the grass looking at the stars for a while. I just remember breathing hard and feeling my heart pound and my head throb, knowing that we had just cheated death - or at least mortal injuries - for a pretty view and the thrill of a challenge. But we did it together, and I was amazed that I had friends who were crazy enough, who loved me enough, who I trusted enough, to go on this adventure with me. 

Throwback Thursday: Best Explanation Ever

About two years ago, I was visiting home in NC, and got to visit my friend, Anna, at her workplace. She serves at a place called "The Enrichment Center," in Winston-Salem, helping people with special needs get jobs and training... very cool! Anyway, I came in, and one of the first people I met was this cool guy with Downs Syndrome, who came up to me and shook my hand and cheerfully - and sincerely - asked, "Did you step on a Ghostbusters Power Pack and that's why you are in a wheelchair?"

A Ghostbuster's Power (Proton) Pack

Yes, my friend. That is exactly what happened. 

I've decided that from now on, if someone obnoxiously asks me "what is wrong with me," I should give them a big smile and say, "Guess." And then, knowing full well that whatever they say cannot possibly be as creative as this guy's explanation, my response should be, "Nope, I've heard better - use your imagination!"

Throwback Thursday: Indiana Sand Dunes

Two summers ago, some friends from North Carolina came up to visit us in Indiana, and we took them to the Dunes for a day-trip. They had tons of fun playing in Lake Michigan, building a sand castle on my feet, and climbing the dunes. I had a great time reading and getting a great tan and watching my friends. 

Of course, wheelchairs and sand do not get along very well, and as we all stood (sat) on the pavement at the edge of the beach and stared at the distance to the water, we decided we needed to get creative. "Tall" Hannah had a long plastic sled, and after carefully positioning me on it, they pulled it slowly down the shore. A bit scary, and not exactly like "dashing through the snow," but no injuries were incurred in the process.

But like any good A-team, we knew we needed an exit strategy... it's easy to go down, but how to go back up?? That's when it pays off for a person with a disability to strategically place herself among innovative and energetic friends, because they are the ones who in return strategically place her near a group of large, strong men (easy to spot when they are shirtless on the beach!) who look like they plan to spend the whole day there too.

When we were ready to go, we settled me back on the sled, and the neighbor-men enthusiastically agreed to help. (A word of wisdom: strong men love opportunities to display their strength!) They put ropes through the side grips and like a dog sled team, they ran - RAN! - up the sandy hill! Moriah sat behind me, holding onto me and muttering, "This is so terrifying!" while I playfully shouted, "MUSH!" What a rush... So remember, all you wheelchair-bound friends, to bring your sled and craziest friends on your next beach trip!

Throwback Thursday: Prom 2000

I was 16, and a hopeless romantic fighting to be practical. I wanted to go to the Junior-Senior prom, but instinctively know no one would ask me. My classmates and I had already been through the preliminary middle school dances together, and everyone knew: Connie couldn't dance. In fact, if you tried to pretend she could, you just ended up with bruises on your shins and scuff marks on the toes of your shoes. I asked a sophomore friend if he would go along, and got a shockingly flat "no." Apparently, word gets around.

My mom suggested I ask an older guy - Bryan, a friend of the family who was home from college for a semester, who I volunteered with in a drama team. He was four years older than me, had an earring, and listened to the Black-Eyed Peas, and being a college guy from Asheville, he was pretty much over the stupid, self-conscious insecurities of high school. So taking me to my prom didn't make him flinch at all.

He decided we needed to get to know each other a little better before then. So he came over to hang out at our house, and he drove our family's rediculous full-sized monster van. We decided to go to dinner on prom night with my best friend and her date, and that we'd go bowling afterward and come back to my parents' house for breakfast, and he teased that he was renting a powder-blue tux. But we never discussed the elephant in the room... that I couldn't dance.

What I didn't realize at the time was how much he was paying attention to the way I maneuvered my wheelchair, or how many Fred Astaire movies he watched that month (in case you are unaware, Fred was famous for being able to dance with anything and anyone).

On the day of the prom, Bryan pulled up to my parents' house in his topless, doorless Jeep Wrangler. I hadn't noticed that my family had cleared the driveway of all the cars and swept it clean, to create a dance floor. Bryan turned on some old Rat Pack music in his jeep, stepped out in a black tux with top hat and cane (he knew how to be very classy), and asked me to dance.

He held my left hand while I drove with my right, and he explained how he would lead me by the way he held my hand. We could waltz and swing together before we left the house. And yes, we danced all night.

I think that is one of the most romantic things a guy has ever done for me - just taking the time to pay attention to the little details, in order to give me the gift of strength and grace, and to make me forget what I cannot do, for one magical night.

Throwback Thursday: MDA Telethon

Twenty-five years ago last weekend, my mom was untwisting my blonde hair from little sponge curlers that I somehow slept on the night before. She dressed me in my frilliest frock and used a whole can of hairspray in my poofy bangs, and we drove to Four Seasons Mall in Greensboro, NC. There, we found the bright balloons and glittery stars, the tables of volunteers on telephones, and the news reporters (anyone remember Cindy Farmer?) who would kneel down beside me and put a microphone in my face and prompt me to talk about how important it was for people to call in and pledge money so that kids "like me" could have the walkers, wheelchairs, and medical care we needed. Somewhere else - most likely Las Vegas - Jerry Lewis was in a bow tie, making jokes, telling stories, and urging people to give... and how could you look at a cute little Miss Muffet like me and not want to give?

The annual Labor Day telethon by MDA (The Muscular Dystrophy Association) was a big part of my childhood. Back then the telethon was an all-day event, but for me it was a year-round job. I was the poster child for several years - meeting the governor, Miss North Carolina, TV stars, race car drivers, corporate business CEOs, and the workers of the US Postal Service. My heart still smiles when I see local fire fighters out on street corners with fire boots, their fund raiser for MDA, or when I see people raising "bail money," or when the shamrocks start filling up storefront windows in March. I got to do some pretty incredible things and challenged the generosity of a lot of powerful people in those days, and I really did love being one of "Jerry's kids."

Kevan and Connie: "We are God's sibling trial!"

Today I was talking to my little brother, Kevan, about our childhood days of stardom, and what I could possibly write about us today in the sense of "Where are they now?" His response was this: "Well, we've beat all the odds." Powerful and true. I wonder how many people who met us as kids believed we would live the lives we have so far. There have been some scary close-calls for both of us, and there are some things we cannot do and have to depend on others for. But it is really amazing to me how much we have done and are doing. We aren't in denial of our disability - we know its effect on us and those we love, and when it comes up as an issue (whether political or personal) we face it head-on and fight for and encourage those who don't have the kind of amazing parents we had, or the resources and knowledge we've had.

Everyone has a disability... ours just looks more obvious than some. But think about what cripples, paralyzes, and weakens you. And instead of living as a victim of that, ask God how he can take even the worst of things and make it into something beautiful and powerful, to change the world and to bring him glory.