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.

steve jobs, the genius behind apple who pioneered accessible technology, dies at 56

Tonight as I was covered in flour from making chicken marsala, my iPhone kept ringing over and over, the caller persistent in reaching me. Finally after washing my hands, I swiped and double-clicked via the clever VoiceOver technology and found that it was my husband calling from his evening jog to tell me Steve Jobs had died. I asked my Apple fanboy of a husband if he cried, and he said, “Almost.” When I hung up, I texted a friend, and as I returned to the sizzling pan, I was surprised to find myself sad beyond what I’d expected of such news.

Steve Jobs became a household name after I met my now husband who turned me on to Apple products back in 2007. Since his own conversion years prior, John had converted dozens of friends, family, acquaintances, and even sometimes strangers perusing the computer aisle at Best Buy on to Apple. Since the iPod, Steve Jobs has become a household name everywhere, his innovative products popping up in homes across the globe. People ate up the iPod, then the Macbooks, then iMacs and Mac Minis and iPads–nobody had ever seen anything like those Apples.

The story behind Apple and their history with Steve Jobs is fascinating, and the world will get to read all about it come November 21 when the long-awaited Steve Jobs biography is released. Even months before it’s stocked on the bookshelves, Steve Jobs’s biography has been a top selling pre-ordered item on Amazon. Timely coincidence that the biography was due out on bookshelves so close to his passing? Maybe, but supposedly the book’s release was pushed up to November because everyone knew Steve wasn’t doing well, this notion only fortified by his resignation as Apple’s CEO only months before. And now with his passing, there is no doubt the book will be a bestseller.

Tonight, even the Apple website, which is always littered with product advertisements, only displays a full-screen portrait of Jobs with his life span, “1955-2011.” I can only imagine the ferocious dumping of Apple stock tomorrow once that morning bell rings on Wall Street.

Apparently, death escapes no one.

In Steve Jobs’s commencement speech to Stanford’s Class of ’05, he says:

No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life. It is Life’s change agent. It clears out the old to make way for the new. Right now the new is you, but someday not too long from now, you will gradually become the old and be cleared away. Sorry to be so dramatic, but it is quite true.

Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.

No matter if you’re a refugee who had been working toward a triple degree in law, philosophy, and literature before escaping from a war-ravaged country on a naval ship; or if you’re a creative genius who changed the face of technology; no matter if you were my mother or if you were Apple’s CEO; death is the destination we all share. (You should really read Steve Jobs’s commencement speech–it is truly awesome and inspirational.)

It is an eerie coincidence that Steve died the day after the latest Apple announcements, but his legend lives on. The new iPhone 4S boasts Siri, the virtual assistant that lets you communicate with your phone as though you were speaking to your butler or KITT the Knight Rider car. John had been harping about this new phone feature for the past several weeks, and while I admitted it was cool, I wasn’t sold; a part of me wanted to hold out for the next round numbered model up: the iPhone 5. But then tonight, John played me this video, and I think I’m in love.

John told me the last woman in the video is reading Braille and then uses the new iPhone 4S to text her friend. More power to the blind!

Apple has changed the world. Steve Jobs had changed Apple. By transitive property, Steve Jobs changed the world. He envisioned every household owning a personal computer. He envisioned it, and then he made it possible. And he made it so that even blind people could use it. He empowered everyone. He empowered the blind.

Thank you, Steve Jobs. May you live on in our innovations.

Stay hungry. Stay foolish.

sk8 or die

I attended my sophmore year at Lakewood High School in Los Angeles County, their claim to fame being the infamous Spur Posse. But while the other girls were busy becoming another point on the boys’ bedknob, I was trying to become one of the boys. I was trying to skate.

Seventeen years have passed since I attempted a kickflip, but my beloved skateboard (whom I christened “The Dill Pickle” because its underbelly was green, not because I liked pickles) still rests in my garage. When i moved to my current house, John tried to give The Dill Pickle away to my neighbor’s kids. I had to run over there and reclaim my DP. I knew i would never get on the board again, but it’s a token of childhood I can never give up.

It tickled me when I found this video of Tommy Carroll, a young blind skateboarder from Illinois. You go, guy.

• And watch Tommy’s interview with Tony Hawk.

read a novel in braille: check.

Overrated

Happy Independence Day, America. (And happy birthday to my dad.) And in celebrating this day of independence, I am going to toot my own independence horn. In my last post about Braille in April, I had talked about how I was finally fully literate in Braille, having finished learning both uncontracted and contracted Braille. Now, I am reporting that I had just finished my first novel in Braille, The Accidental Tourist by Anne Tyler. While I’m very glad to have accomplished such a feat, I was at the same time disappointed that the novel was not so good. For additional reasons that I will not rant about here as this is not a fiction review blog, all I will say is I am surprised this won the National Book Critics Circle Award and became an award-winning movie. My husband says if I am to scorn a Pulitzer Prize finalist, then I’d better go ahead and win it as soon as I graduate with my M.F.A. in Fiction. Doh!

Regardless, I enjoyed the process of reading by touch, and this was what kept me going despite my sentiments toward the story itself. The novel, with its 352 pages in paperback, came bound in three thick binders. It took me three months to finish the novel, and while that is slow for someone who claims to be a writer, it is still quicker than the majority of people I know who read maybe one novel a year. I timed myself at random points and found that when I started the book, it took me about twelve minutes to read one page. Toward the end, I managed to shave my reading time by half to six minutes a page. Woo hoo! My ultimate goal is to be able to read Braille as quickly as I was able to read print. People have told me it’s possible, so I’m keeping my fingers crossed.

My next reading project? I’m going to conquer Tolstoy’s Anna Karenina. We’ll see how that goes. Stay tuned for updates.

blind mother wins marathon

My cousin, Pauline, recently sent me an online article about Amy McDonaugh, a legally blind woman from South Carolina who won the 13th annual Flying Pig Marathon in Cincinnati. She ran the 26.2 miles in 2:58:14, and this marks her first marathon win. Amy is a 34-year-old stay-at-home mom who has no peripheral vision, very poor vision in one eye and is blind in the other, but she ran the entire race without a guide. She can see straight-away; perhaps this helped her “focus” on the finish line.

Pauline noted that maybe next year, John and I can do the MS150 together, but with my tendency towards fatigue, I don’t quite see that happening. Instead, I’ll remain happily indoors blogging about all the great things other blind people do.

• Read the full story here.

blind culinary student gets noticed by charlie trotter

This isn’t the newest of news but I recently came across the article for the second time and realized I hadn’t blogged about it the first time because, evidently, my blog hadn’t existed back then. Of course, that just wouldn’t do considering the fact that she is like the cornerstone for the entire reason my blog even exists!

Laura Martinez, a culinary student at Chicago’s Le Cordon Bleu, expressed concern with landing a proper job in a reputable kitchen after graduation because of her visual impairment. Last year, CBS featured her story on the Chicago evening news and arranged for her to meet Charlie Trotter whose same-named restaurant is one of Chicago’s top haute cuisines. The real kicker was when Trotter invited Martinez to work the kitchen in his flagship restaurant. But will she succeed in a kitchen full of sighted cooks? I don’t know but would be interested if anyone had the follow-up story.

I’m literate (for real this time)

The last time I blogged about my Braille learning experience, I had just attended a little graduation ceremony which denoted that I finished grade one of Braille otherwise known as uncontracted Braille. Shortly thereafter, I was on my way to learning contracted Braille (grade two), and boy, is there a lot to learn (read: memorize) in contracted Braille! I finished the second book in my Braille program and borrowed a novel from the National Library Service in order to practice reading but I kept coming across symbols that I didn’t recognize. I called my Braille teacher, and it turned out there is a third book to the Braille series, and that he would have to special-order it for me. Apparently, there wasn’t a single copy in the office because nobody had gotten as far as the third book yet in this fairly new Braille method. I had to laugh: to think I am an overachieving nerd in all academic aspects of life.

In contracted Braille, every letter not only stands for a word when written by itself, but there are also all other sorts of symbols that stand for groups of letters, e.g. “-ment,” “-sion,” “-tion,” “there,” “where,” and so on. It’s easily self-teachable since each subsequent lesson builds upon the previous lessons, but there are just so many darn things to memorize!

I just got to the end of all my lessons recently, and it felt really good. It seems like all I want to do lately is read Braille. I guess I really do love reading. I missed it, and I didn’t even know it until I started doing it again. Braille is something one has to practice daily or else lose it very quickly. Now I’m on to attempting The Accidental Tourist by Anne Tyler all in Braille. The novel comes in three four-inch binders. Wish me luck.

3 girls with nmo conquer the disease and, inevitably, the world

When I first met Erin and Jenna and their husbands back at the first NMO Patient Day of 2010, we instantly clicked, and over dinner at an Italian eatery, the idea was born. It had started as a joke when my husband, John (who is a tech geek), mentioned that we should start a blog called the Three NMOs, a play off the “Three Amigos.” Well, the name may not have stuck but the blog idea sure did.

And so I introduce to you our NMO Diaries blog, an online space where the three of us ambitious and [relatively] young girls show how we try to live life to the fullest in spite of the Devic’s dianosis. It’s sort of a “I am NMO woman; hear me roar!” type of attitude, and we welcome your readership. The cool thing about it is it will contain a lot of videos (read: vlog) since Erin and Jenna prefer to leave the written word to me. The other cool thing is the name behind the Blind Cook is revealed. (Yikes! Enjoy.

• Check out NMO Diaries.

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.