How Can We See in the Dark?

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Originally published on Huffington Post, 5/17/13

If you've been hungry lately for some soul-charging inspiration -- or for a cookbook by a true Master Chef -- I highly recommend Christine Ha's Recipes from My Home Kitchen (just published by Rodale Press).

Christine Ha, in case you missed watching her extraordinary journey on Fox's Master Chef last season, is not only the first blind cook to win that show -- defeating 30,000 amateur home cooks in the process -- but she is also the only blind cook who has ever been a contestant on any cooking series.

Although many of us take for granted all that our eyes do for us, I think that the terrifying thought of suddenly being plunged into darkness is one we can all imagine -- which made Christine's win that much more emotional and meaningful to so many viewers.

The truth, as I've learned, is that few of us get to have lives so charmed that we'll never find ourselves in the dark. I don't mean literally in the dark. I'm talking about crises that make us feel like we've been cast into darkness. You know that horrible moment of - WTF?! No rhyme or reason. Totally unpredictable. A sudden heartbreaking loss. Or, out of nowhere, getting fired and not being able to pay bills. Or some unprecedented uncertainty or a scary health challenge.

In that sense, I feel we're all in the dark, looking for answers to tough questions that may not have known solutions--like trying to reach for the light switch that may not even exist yet.

So how did she do it? How did Christine achieve what everyone else predicted as impossible? Each week, Christine continually baffled the judges by creating culinary masterpieces as visually delicious as they tasted -- the real test. Chef Gordon Ramsay even asked at one point if Christine really was blind.

"Yes, Chef, I am," she answered. When she baked a perfect apple pie from scratch -- Google that episode for added inspiration -- Ramsay was almost in tears, pointing out the golden pastry crust sparkling with sugar crystals, asking her "Can you see this? Can you see this?" "No, Chef," she answered, "I can't." In fact, she was really worried about this cooking challenge because she had never made an apple pie before.

Christine started to lose her vision about fourteen years ago, around the time she became interested in cooking. In 2003, she was diagnosed with NMO (neuromyelitis optica). A rare autoimmune disease often misdiagnosed as MS, NMO blindsides its victims without warning, assaulting both the optic nerve and spinal cord with attacks that can lead to paralysis, life-threatening seizures, partial or total loss of sight, and worse.

In early 2008, my beloved daughter Ali, almost 15, came down with blurred vision and pain in one eye; within a week she was diagnosed with NMO. In those days, the medical world was very much in the dark about this nightmare affliction -- with next to no information available for the newly diagnosed and no hopeful research underway. Refusing to accept the status quo, my husband Bill and I created the Guthy-Jackson Charitable Foundation to fund necessary research to better understand, treat and ultimately cure the disease.

As dark as those days were -- and, frankly, sometimes still are -- I had to believe that everyone who used the word "incurable" for such a vicious killer was wrong. I decided to make NMO the poster child for increased funding of research for so-called "orphan" diseases. So my mantra (or Momtra) became "NMO means No More Orphans" as I went out to assemble a team of miracle-workers willing to think outside the box and to collaborate in non-traditional ways.

Today, we have gathered some of the most brilliant medical minds in the world to work alongside our patients and their families. There is light. And boy will it come flooding in when we have the cure. Ali is now twenty years old and is thriving as a college student, not to mention playing a leading role as a patient advocate helping to grow our global NMO community -- which now includes the miraculous Christine Ha.

So how do we face the fear of the unknown by using our other senses, as Christine Ha does, to create our own recipes, our own roadmaps to security, our own miracle cures? How do we see in the dark?

To answer that, Christine teamed up with the Guthy-Jackson Charitable Foundation to create this short film:

Whatever the dark means to you, I hope that the message in the film speaks to you: "If you have drive and passion, you can overcome any obstacle. Set your goal, pay attention, work with others, find a way. We are all blind cooks working in the dark to transform basic ingredients into a life giving cure."

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How do you see in the dark? What is your goal? Tell us by leaving a comment here.

Click here to purchase your copy of Saving Each Other by Victoria Jackson and Ali Guthy.

You can buy Christine Ha's cookbook (complete with apple pie recipe) at her website www.theblindcook.com/cookbook/.

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Guest Thursday, 28 March 2024

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The Guthy-Jackson Charitable Foundation’s mission is to fund basic science research to find answers that will lead to prevention, clinical treatments, and an eventual cure for NMO Spectrum Disease.

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