caution: blind boarder

I don’t know what’s come over me. The older I get, the more daring I become. Or maybe the courage came with the vision loss, an illogical need to overly compensate to feel “normal”—“everything you can do, I can do too.”

Whatever the motivation, it has driven me to skydive two years ago and ski last year. My most recent adventure involves strapping both my feet to a board and skidding down an icy mountain. That’s right, I tried snowboarding last month. A bunch of friends decided to take a trip to Breckenridge again, and again, I called the BOEC to schedule boarding lessons. I was surprised to find that boarding came more naturally to me than skiing. I was less miserable this time and could even say I had fun. I was psyched to be able to go down the green and connect my turns a little from toe to heel by the second day. My teacher insisted that I was better than a lot of sighted beginning boarders. I think the key was the no fear factor—because I couldn’t see how steep a slope was or where the obstacles were, I just had to go with it and fully trust my instructor. I also think I had great instructors who, obviously, are highly trained. Thanks, BOEC, for helping people of all abilities enjoy the outdoors.

Here is a video John got of me snowboarding down the green with Wendy, my instructor. I’m slow as hell, but hey, I can say I carved on my very first trip! I hope this video inspires you—know that you can really do anything if you put your mind to it. Happy New Year, everyone!

elly and franky: pug b.f.f.

I haven’t been one for posting about food lately. After my first round of routine Rituxan last month, my vision deteriorated slightly. We decided to wait to see if it improves after the second round of Rituxan, but unfortunately, it remained the same: mildly worse than baseline. Dr. Greenberg, my neurologist in Dallas, decided to move forward with high-dosage steroids with the hopes that they will return my eyesight. We had to go with the oral route since it was right around Christmastime, and getting in to an outpatient clinic for IV steroids would prove to be difficult. (A side note: why does it seem like all my health problems arise during such inconvenient times like holidays and natural disasters? I know I’m not alone in this, too.)

Perhaps the oral steroids would work out better financially for us anyway since we haven’t renewed my Cobra insurance coverage, and we haven’t been able to enroll in John’s insurance through his new company. Regardless, I hadn’t been on such a high dosage of steroids in so long that I’d forgotten all the weary side effects that come along with them: extreme itchiness, hot flashes, taste distortion (constant metallic taste in dry mouth), increased appetite, general discomfort and bloatedness, constipation, restlessness, and insomnia. I hate all of it except for maybe the restlessness but only because it helps me turn into some extraordinary productive machine; I’ve been cleaning out the closet and tidying up the house and thinking about the novel like there was no next hour in the day. John took a forlorn picture of me yesterday at 11 PM. I was in my pajamas in the closet buried underneath boxes of shoes and bags of clothes trying to figure out what to donate and what to re-stack neatly on the shelves. He threatened to post the photo on Facebook if I didn’t take a sleeping pill right then and try to rest.

Needless to say, despite what you’d think with the increased appetite and energy, I haven’t been in the mood to cook or eat much. In fact, I’ve been kind of moody with what we NMO patients call “‘roid rage” lately. That’s why it’s important to remind ourselves of the fun and funny things in life. Like these two pugs who triple as best friends and guide/VI client. John sent me this post the other day, and we immediately thought of Jenna, my NMO Diaries sister who owns a pug of her own, Marmaduke.

Elly is a blind pug from Wales who relies on her pug friend, Franky, to guide her around town. How cute is that? And so I leave you with this lasting impression of 2011. Remember what extraordinary blessings we have in this world despite our circumstances. With the right group of friends and support, we can survive anything, and we can survive it with a smile.

caution: blind skier

John loves the snowy mountains while I love the sunny beaches, which is why for each of our respective bachelor/bachelorette trips, we headed to our desired destination: John to Breckenridge and me to Miami. Now that we’re married, we try to appreciate the other’s preference for the outdoors. This meant I had to bundle up and face my most dreaded enemy: the cold.

John fell in love with snowboarding after he went for the first time last year. Before his bachelor trip, he had never seen real snow in his life. Born and raised in Houston, the only kind of “snow” he’d seen was the southeast Texas kind: quick flurries that came about once a decade. But ever since he got a taste of the snow and mountains, he was hooked. And so this year, whether I liked it or not, he was going to plan a trip back to Colorado.

Never in my lifetime did I think I was going to attempt snow sports again. My first ski trip occurred over 15 years ago. I went for only one day with my family. After two runs down the bunny slopes, my uncle assured me I was ready for the green (intermediate) trails. What the hell was he thinking? It took me 2.5 hours to get down those greens. Meanwhile, my cousin lapped me three times on the slopes, a pro at the tender age of six. I ripped a hole in my pants with the ski pole and at one point, even skied straight into the yellow caution tape that roped off the edge of the cliff. It was a horrible experience, and I never wanted to do it again, let alone do it blind.

But that’s exactly what I attempted this time around. I decided it was something I should do not so much for my husband but for myself. I wanted to feel capable. It was something I had to prove to myself.

The Breckenridge Outdoor Educational Center (BOEC) is a neat non-profit facility whose mission is to adapt recreational activities so that all (including those with special needs) can enjoy the outdoors. The instructors from their adaptive ski school are certified to teach and guide those that are blind or paralyzed. Originally, I was going to sign up for snowboarding, but the BOEC advised that boarding was an activity better done if I had 3+ days to spend on the slopes. Because our trip contained only two full days on the slopes, the BOEC folks suggested I try skiing first, that I’d see more success with skiing in only 48 hours. And so I listened to their better judgment and opted for skiing instead despite the nightmare experience I had a decade and a half earlier.

The first half of the first day was spent feeling out what it was like to glide around with a ski on the bottom of my foot. First, I walked around on flat snow with a ski on my left foot only. Then just my right. Finally with both of them on my feet. Then I took the magic carpet/conveyor belt to the top of the bunny slope and practiced the wedge: the wider the wedge, the slower you go. Eventually, I learned to turn and make S’s in the snow. The afternoon was spent on the green trail at Breckenridge, and I actually made it down the entire green without falling! (See my skiing skills in the below video.) Granted I was going 1 mph, but still…I was so proud of myself.

I went against my teacher’s advice the next day and tried to ski Keystone instead of sticking to Breckenridge where, as John says, the greens at Key were like the blues(one level higher than greens) at Breck. The trails were steeper, and I ended up cutting my full day lessons in half to just a morning session because I was utterly exhausted. Not only is the sport already tremendously tiring–your legs are working muscles they don’t normally work–but for me who is a beginner and blind at that, skiing made my entire body tense because I was trying so hard not to fall. In addition to that, the fact that I can’t see to focus on any one spot made me get motion sickness on both the lift and at the bottom of the mountain; whenever I’d stopped, my brain and body still felt like I was moving. Needless to say, concentrating so hard on not falling and not upchucking all over my teacher were enough for me to throw in the towel by lunchtime.

I must say, though, that my instructor, Jeff, and his assisting intern, Brian, were awesome because I only fell twice in the 1.5 days I skied. They made my experience as awesome as it could be, considering I was a turtle on the slopes and had to wear a bright orange bib that said “BLIND SKIER.” At least I wasn’t tied to the end of a rope like a sled dog.

A bonus to the Colorado trip was the reunion I had with Erin and Jenna, the two wonderful young women I met at the NMO Patient Day. In the three months that we’ve known each other, we’ve grown incredibly close, communicating either by phone or email every week, sharing the goings-on in our lives, our day-to-day routines combined with our NMO struggles. It was great to see them again and know that we were all hitting the slopes to prove something to ourselves: that in spite of the obstacles, we indeed can do it!

The BOEC does more than skiing and boarding. During the summer, there are season-appropriate sports like whitewater rafting. Go here to learn more about the BOEC. And you also don’t have to go to Colorado to do adaptive skiing. There are schools all over the U.S. and Canada. Just google your destination along with “adaptive ski school,” and you should be able to find what you’re looking for. And remember, if the Blind can Do it, so can you.

my second organized tandem cycling experience ever

Mmmmmm...donut...

On November 7, we strapped our KHS on the car and drove out to the Sun & Ski in Katy to ride the Tour de Donut. We rode the 28 mile route and joined the timed race even though we told ourselves we’d take it easy especially since it was going to be my longest distance cycling ever. i guess we figured it wouldn’t hurt to try for the ski trip for two should some miracle happen that day and our bike either grew wings or our stomachs expanded to fit one million donuts.

The weather was extremely chilly for me that morning–maybe upper 40s? Luckily, I had just made a trip to Performance Bike to buy biking pants (which still left my calves naked) and a skull cap to wear underneath the helmet. I wore a windbreaker jacket and winter gloves underneath my biking gloves, too, and I was still cold. Once we started biking and the wind hit my face, I grew to understand why John was considering buying the full face mask. You may look like a scary robber but it’s totally worth it; that wind is vicious, and I was even cold from the stoker position. Poor John; he had to bear the brunt of the wind being on the front of the bike.

By the time we made it to the first rest stop, however, it was getting warmer. The donuts were cold but putting something in my stomach still helped to warm my body up. There were two rest stops for the 28-mile ride, and between the two of us, we ate seven donuts. We biked it in 2:33 including the two stops we made to eat and pee and the one stop we made so John could help a guy change his flat. According to our trustworthy Cyclemeter, we were in motion for two hours, which means we averaged 14-15 mph. Not bad. The app also told us we did hit over 20 mph a few times, but that wind was killer.

It was nice once the sun came out but I wish John would’ve put the speakers on the bike. It’s nice to view the suburban landscape while biking, but if you’re the Blind Cook, what can you do besides listen to cars passing you up?

In the end, after taking into account our time and donuts eaten (which shaved off five minutes each), we finished just about in the middle. I guess that makes us average bikers on the tandem. But it was a fun time I got to spend with my hubby getting some exercise and doing it all for a good cause. Thanks to Shipley’s and Sun & Ski for sponsoring the Tour. Till next year…

houston gets greener with bike share

Bike sharing demo in Discovery Green on Nov. 1

When we were on the Barcelona leg of our honeymoon earlier this year, John noticed there were kiosks around the city where people were seen swiping a card into a machine and then pulling a bicycle from the pile and taking off down the road with it. After a few times, John realized it was a sort of a bike share program where you could, upon running a credit card, rent a city-owned bike to get around town and then simply return it later at whichever kiosk you end up at. Even better, it’s free if you get it back to a kiosk in less than 30 minutes.

We thought this was such a neat idea: by providing an inexpensive, efficient mode of transportation for its citizens, it promotes less emissions and cleaner air. When, if ever, will Houston get on the earth-friendly bandwagon?

Well, it looks like we who are notorious for our gassy SUVs and monster trucks will not have to wait much longer. According to Laura Spanjian, Houston’s Sustainability Director, the city will launch the beginnings of a bike share program in early 2011. Houston was one of 25 communities to receive a $423,000 grant from the EPA to reduce its greenhouse gas emissions from transportation, beating out 400 other competitors. (Way to go, Houston, considering you choke in almost every other competition–read: sports.) Houston also plans to use part of the grant on improving its electric car infrastructure, aiming to increase the number of charging stations from 15 to 65. With such plans in place, Spanjian hopes to meet the new EPA ozone guidelines.

I know this post doesn’t necessarily pertain to my themes of eating, cooking, and seeing vs. not seeing, but since I’ve been blogging a lot about cycling lately, I thought it was worth sharing. It’d be awesome if they added some tandems on the kiosks but somehow, I don’t picture that happening.

• Read more about the Houston bike share.
• Read the bike sharing blog.

our tandem story

I was asked by a friendly reader after blogging my first experience with an supported bike ride how it felt to ride on the back–the technical term being “stoker”–of the tandem bicycle. It was then that I realized I never talked about the short, short history of our tandem cycling on this blog: why we decided to get one, where we went to get it, how we picked “the one.” So here it is: a breif, brief history of our life as tandem cyclists.

It all started when John decided to bike the MS150, a two-day, 180-mile supported ride from Houston to Austin held every April in support of raising money for MS research and the National MS Society. His first year doing the ride was only one-and-a-half years ago in 2009. By chance, the Houston Chronicle learned of his story–how his girlfriend at the time (that’s me) had an autoimmune condition similar to MS and how that inspired him to ride the ride–and decided to run an article about us. (The printed version, which we plan to frame one day along with the bandana I decorated for him, is sitting in a plastic sleeve on our shelf.)

So with John getting into biking and having done the MS150 for two years (2009-2010), I thought it would be cool if I could join him, not necessarily to do a full-out MS150, but to get regular exercise and do a few locally supported charity rides. The only other time I rode a tandem was in Vancouver with Joanna, and once we got the communication down, it was fun and easy. But with John, I was afraid that his experience combined with my novitiate would make for constant bickering to the point where the poor bicycle would be casted aside to the dusty corner of our garage. Regardless, we took the risk and decided a tandem bike would be our wedding gift to ourselves. So a few weeks after the dust had settled from our wedding, John and I drove up to House of Tandems in Spring, test rode a KHS, fell in love with it, and dished out the [insert amount equivalent to five thousand packages of ramen] for one we could call our very own. It was custom-built with a matte-finished champagne colored frame, Ultegra 105 components, and a Cateye computer to record our speed, RPMs, etc.

For some time, our bike remained in the garage. It was just too damn hot in Houston to ride. At one point, we even had a flat on it because it sat idle for so long. But now that the weather is cooling, biking is more bearable, so we’ve ventured to take the KHS out more.

Riding a tandem as a stoker (back) versus a captain (front) takes both more and less energy, depending on how you look at it. The captain has to steer, which requires more concentration, but the stoker is supposed to be the stronger “pedaler.” But obviously in our situation, I have to be the weak-pedaling stoker. Pedaling on a tandem isn’t difficult though–I manage to move us forward at a decent pace even when John picks up his feet and I have to pedal for the both of us. In fact, it’s kind of nice because when I get lazy, I just rest my helmet on his back and close my eyes while my legs simply go through the cycling motion.

Tandem cycling, like any other team sport, requires communication. John has to call out such warnings as “Going!”, “Slowing!”, and “Stopping!” This way I can clip in and clip out with my shoes, something I still have trouble with in spite of my egg beater pedals. My main complaint, however, would have to be the uncomfortable stock seat. Even though I wore my padded shorts, my crotch was tender (bruised?) for three days after the Midnight Ramble. After urinating, I couldn’t even properly wipe myself–I had to gently dab all the while gritting my teeth. Needless to say, John and I are planning to replace the seats in time for the Tour de Donut (which we are riding the day this post is scheduled to publish). Hook up John’s iPod speakers to the thing, and we’re ready to go.

Biking in itself is fun. I get aerobic exercise; build lean muscle in my back, arms, and legs; and enjoy the sounds and smells of what I’m sure is scenic Houston. Yes, it would be nice if I could enjoy the sights, too, but being able to feel the breeze on my face is enough to get me out there cycling.

my first organized tandem cycling experience ever

Okay, so what I thought would’ve been my first organized bike ride on our tandem bicycle actually turned out to be the Moonlight Ramble, a ride benefitting Bike Houston, an organization that advocates for Houston to move toward becoming a bike friendly city. One of their most recent endeavors was getting the city to place bike racks on Metro buses so that bikers could transport their bikes using public transportation. Yes, this is something that almost every large U.S. city has been doing for years, but Houston, with their SUV and pick-up truck culture, has yet to yield to cyclists.

John and I were sitting at home last night doing what couples do when there’s nothing else to do on a Saturday night–we were watching The Silence of the Lambs (a movie that my husband had never seen until yesterday)–when John saw on Twitter that there was an organized bike ride to be held at 2 AM. And with nothing better to do, we decided to ride, convincing our friend Daniel to join us. So three hours later, we were at the George R. Brown Convention Center with our gloves on and helmets strapped under our chins. There were two paths: the short route (10 miles) and the long route (20 miles). Of course, we planned to do only the short route as it being two in the morning, we weren’t too keen on getting to bed at dawn.

They started us off in waves promptly at two. At first, there was a lot of stop-and-go traffic since we were obeying traffic lights. But soon, impatience got the better of everyone, and we were riding through red lights so long as there was no oncoming traffic. We rode through downtown and saw all the clubgoers stumbling out of the bars, honking at us for getting in their way and permitting them to only go ten miles per hour down downtown streets. We rode through the Medical Center, the Museum District, the Galleria.

“Where’s the split off for the short route?” Daniel asked one of the volunteers once we were seven miles in.

“Oh, that was way back there. Back at the fountain,” the man said.

After much cursing, we decided it was easier to just finish off the 20 miles than backtrack to the short route fork. We biked up the 610 feeder, down Memorial, all the while feeling perturbed that we were so much closer to home than to the Convention Center and thus, the end of the ride. Then John got the brilliant idea that we should break off from the route, bike home, and Daniel would take John to pick up his car at George R. Brown.

“That is the best idea ever!” I said, patting John on the back. Suddenly, things looked brighter, hopeful.

“Wait, my car keys are in John’s car,” Daniel said.

Egad! Now we really had no choice but to finish off the 20 miles. I nearly cried when we rode past the Memorial-Washington intersection. So close to home, yet so far.

We reached the car at 3:48 AM, earlier than I’d thought it’d be, later than Daniel had hoped it would be.

“Worst idea ever,” John remarked as we drove home.

Later, he apologized to me for “putting me through this.” But in actuality, I didn’t mind it. It was something different to do on a Saturday night. It was my first time participating in an organized ride, and on a tandem nonetheless. It gave me a chance for some much needed exercise. It felt nice to smell and hear things other than the smells and sights of Memorial Park. I got to say I survived biking 20 miles, my longest ride yet, and felt good about it–no soreness, no pain (other than the bike seat jabbing my crotch for two hours). Mostly, it was nice to do something with my hubby, something he used to do without me. Yes, this is only the beginning. I will slowly invade all his activities, seep into every crack and crevice of his life. Soon we will be one of those couples that can’t do anything without the other. Soon I will learn to golf.

eat a donut, ride a bike, make a wish come true

This week, John and I signed up to participate in the upcoming 2010 Tour de Donut on November 7 at 8:00 AM in Katy. The Tour de Donut is a charity bike ride supporting the Texas Gulf Coast and Louisiana chapter of the Make-A-Wish Foundation the largest wish-granting organization that brings joy to children with life-threatening medical conditions. The Foundation first started in 1980 when seven-year-old Christopher Greicius who was undergoing treatment for leukemia wished every day that he would grow up to be a police officer. One thing grew into another, and the Make-A-Wish Foundation was born, becoming big enough to warrant pop culture references (e.g. in “The Wink” episode of “Seinfeld”). In all seriousness, though, the Foundation does some great work, and with a cousin’s one-year-old daughter who died last year from neuroblastoma, I’m all for this line of charity.

The Tour de Donut’s concept is to bike one of two routes (28 vs. 55 miles) in the fastest time possible. A-ha, but here’s the trick. The more donuts you eat, the more minutes get shaved off your cycle time. The irony is blatant, but it’s all in good fun. This will be John’s third year doing the ride, and he said he’s even seen someone make a necklace out of the donuts to munch on while biking. Hardcore. But the grand prize this year, so I hear, are two ski lift tickets to a resort in Colorado. (Can anyone verify this?) So I’d say the snowy fun to be had may be worth the fashion sacrifice of a donut necklace.

This also marks our first supported ride on our tandem bicycle, not to mention my first supported ride ever. Hopefully our KHS holds up. We need a name for our tandem. Any suggestions?

I’ll blog about the Tour experience afterward, but in the meantime, why don’t you down some donuts, ride some bikes, and make some wishes come true? Click here to learn more about the Tour de Donut and register. I’ll see you there with a mouthful of glazed goodness a la Homer Simpson.

blind leap of faith (out of a plane)

On Saturday, I flew 13,000 feet (or 2 miles) into the sky and walked out the open door of a plane. What was going through my head the whole time? That this is the craziest thing I’ve ever done.

For ten years, skydiving had been in the back of my mind. It was something I thought I’d try, but nothing I was ever proactive about. A group of coworkers and I had talked about it years ago, but since nobody ever organized it, I remained a skydive virgin.

Then I saw the Groupon deal a few months ago for Skydive Houston: $99 for 1 tandem skydive (a $179 value). I clicked the “purchase” button, and a couple of months later, Teresa, Joanna, Joy, Danny, Avelina, and I were scheduled to take the plunge.

We first had to sign four pages worth of legal documents mostly listing all the parties we cannot sue in case of injury or death. There were at least two or three places where we had to initial next to something like: “You may be seriously injured and possibly even killed.” Then we watch a ten-minute video with a man warning us that we are risking injury and death. Finally, we were paired up with our tandem instructors.

Because “sight impairment” was written on my application, I was paired with their chief instructor, Phil Schmitt. He assured me he would not put me in the way of any harm. I felt better knowing he had been skydiving for 21 years with over 10,000 jumps under his belt. When asked if he’s ever jumped with blind people, he said he’s not only tandem-jumped with blind people but also paraplegics and quadriplegics.

“I’m basically the guy that runs the place. I don’t do tandem jumps anymore, but they call me out when there’s someone with a special need,” he said.

Needless to say, he is the best instructor. He held my hand through the entire experience (literally and figuratively). He made sure I knew what was going on at all times from first suiting me up in the tarness to landing. He didn’t let me hit my head on the plane door. On the way up in the plane, he told me all I needed to do as soon as we exited the plane was kick my legs back and get my feet as close to his butt as possible, and he would take care of everything else. He described to me the scenery after he deployed the parachute. And while some of my friends landed skidding on their butts, my landing was incredibly pleasant; as soon as he told me to put my feet down, I felt a soft thud beneath my feet and basically only took a few steps and was done, safe on the ground. It was a cushion-y, cotton cloud-like landing.

My experience was not without some unpleasantness, however. I had some major motion sickness, especially toward the end of our five-to-seven minute drop (1 minute in free fall, the rest with a deployed parachute). I had this same motion sickness when I went hang gliding in Switzerland in 2001 but recall it being worse back then. If I ever do this again, I need to look into some motion sickness remedies. The nausea, though, could very well be attributed to my jangly nerves. Phil also said because my ears were popping during the free fall, something about my body not being in equilibrium could also be part of the nausea. Because I could not see the sights, 100% of my concentration was on how I felt and what I heard. The free fall felt like I was being blown full force by a huge fan. There was just a lot of pressure on the front of my body, and my face was frozen into a grin. (It was impossible to close your mouth when you’re going 120 mph down toward earth.) Even if I screamed, I wouldn’t know it because all I heard was the loud air rushing around me. I had my left hand clenched in a fist the entire time for fear of losing my wedding band. After the parachute opened, our bodies went from horizontal to vertical, and it was much quieter. Some of the parachute maneuvers made my tummy flip, but luckily, I made it to the ground sans vomit.

I couldn’t decide if I liked skydiving or not, but I did wake up in the middle of the night last night still thinking about it, reenacting the jump over and over in my head. The best moment was stepping off that plane and plunging into the clouds; it was an incredible blind leap of faith for me. Because the experience was so insane, I must still be processing it.

Phil told me only 1% of the world’s population has ever skydived, and that I had the courage to do it visually impaired. Of course, I think some things are better off not being seen. Like the open plane door that I’m about to jump out of.

Here is a clip from the video taken of my tandem skydive. Thanks, Phil, for getting me to the ground alive and safe. Let this be proof that a blind person can skydive!

P.S. I was told my skin is flapping in the wind. Pretty disgusting, I know. I’m picturing myself looking like those people in that “Black Hole Sun” video by Soundgarden with their melting faces.

c skydiving from john suh on Vimeo.