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.

fight that flu

It’s that time of the year again. You want to enjoy the chilly weather, the Noel season, the gatherings with loved ones, hot chocolate, eggnog, hot pot, turkeys and hams and pot roasts what have you. But what ends up happening is you’re lying in bed next to Death, shivering and sweaty and feverish and pissed. Why is it that the flu is so common during colder weather? My mama used to always warn me if I didn’t wear my jacket and gloves and thermals, I’d get sick. But I’ve heard that being cold is not the culprit—it’s the cold weather driving everyone closer together in a huddle which thereby spreads germs much more quickly and easily. Does anyone know if that’s true?

Either way, cold weather equates to more people coughing and sneezing and getting the flu. Earlier this year at the tail end of flu season, I wrote an article for Houston Press about which things we can ingest or imbibe to fight the flu. I thought it would be fitting to link to the article now that it’s season again.

Despite my compromised immune system from the Neuromyelitis Optica (NMO) and Rituxan treatments, my neurologist told me to get the flu shot this year, saying the benefits outweigh the risks. (I got mine at CVS for $30. You can get them at most pharmacies or at your doctor’s office. Most health insurance policies will cover the flu shot, too, so what’s there to lose?) Good thing because my husband has been sick twice this season already. I hope you can avoid the flu this year, but in the case that it catches you, read my post entitled ”What to Feed That Flu”, and you should be back on your feet in no time. Say “hi-yah!” Miss Piggy-style to that virus.

holiday gifts for the blind

If you’re like most people, this time of year is not always one of family fun and relaxation. It’s a season of hustle and bustle, of scouring the malls and web for that perfect gift (or gifts) for your spouse, child, grandchild, best friend, crazy aunt, postal carrier. No, the holidays are not stress-free at all. And if you’ve got a visually impaired person on your Christmas list, you may be at an even greater loss as to what to get her.

Not to fear. The folks over at AccessWorld have put together their annual list of holiday gifts for the sight-impaired. First on the list is cooking gear for the blind. Check it out and get some great ideas to give to that special sight-impaired someone in your life. Now visually fine crazy Aunt Wanda? Can’t help you there.

my go-to recipes for thanksgiving

Tomorrow is Thanksgiving already. Boy, has this year slipped past. I’ve been swamped with all of the usual end-of-year business such as holiday prepping and semester wrapping-up not to mention I’m in the middle of my Rituxan treatments which have got me all exhausted. Why doesIt seem like I only get beat down by this NMO during such inconvenient times like the holidays or when a hurricane is coming to town? But as with most things in life, you get all sorts of things thrown at you, and you just learn to take them in stride. I’ve been thinking about Joan Didion’s novel Play It As It Lays lately, how you just need to play the cards you’re dealt. Anyway, it’s Thanksgiving, and I still have lots to be thankful for.

I’ve already posted some of my favorite Thanksgiving recipes last year, so no need to waste cyberspace and repost. Instead, I’ll just link to them. Slap on your apron and get to cookin’! Happy Thanksgiving, and don’t forget what you’re grateful for.

• Deep-Fried Turkey
• Green Bean Casserole
• Broccoli Rice Casserole
• Pumpkin Cheesecake

meet the blind geek

Who is the Blind Geek? Me, that’s who.

In order to streamline topics, I’ve started up a new blog dedicated to tech news and reviews for the blind: the Blind Geek. That way, the Blind Cook can concentrate on all things food related. The Blind Geek is already up and running–all content from this blog under the “Technological advances” category has been copied over there–and from now on, all tech related entries will post only on The Blind Geek. Please be patient: the blog is still undergoing a makeover though it’s functioning for the most part. Also, my techie husband, John, will also be a contributing writer to the Blind Geek. I hope you decide to subscribe to both blogs. Any feedback is welcome.

• Visit the new Blind Geek blog.
• Follow the Blind Geek on Twitter: @the_blind_geek

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.

2011 nmo patient day, here i come

Last year, I attended the 2010 NMO Patient Day hosted by the Guthy Jackson Charitable Foundation in L.A. This year, I was unsure if I could go, but things fell into place, and it looks like I’ll be coming once again. I’m thankful for these sorts of gatherings because not only does it give hope and knowledge by the spread of information, it builds community. NMO can often be a lonely disease, and (as ironic as it sounds) it’s wonderful to be in a room full of people who share the same battles. It was here that at this same time last year I met Erin and Jenna, and the birth of NMO Diaries commenced. I encourage those who have NMO or loves somebody who does to attend the 2011 NMO Patient Day to be held on November 9 at the Hilton Beverly Hills in L.A. Maybe I’ll see you there. And even if you can’t make it in person, you can view it from the comforts of your own home for the events are broadcasted over the web for full accessibility for those who cannot travel.