My Experience With Neuromyelitis Optica (NMO) and the Journey to Find a Cure

At first -- okay, for a while -- I was angry. This was not the way I'd planned spending my formative years, after all. But then I began to contemplate making peace with my enemy, strange as that sounds.
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doctors lab white coat with...
doctors lab white coat with...

Four short years ago if you Googled NMO, neuromyelitis optica, also known as Devic's Disease, you would have found almost nothing other than a brief, terrifying account of a little-understood illness. Today, if you Google Ali Guthy, you'll most likely be led to an extensive definition of NMO. But that by no means defines me.

So who am I?

I am a daughter, sister, friend, student, tennis champion, cupcake connoisseur, and a lover of all things chocolate. I am a leader, supporter, athlete, fan, and a fighter extraordinaire. I am a laugher, talker, listener, hugger, and supreme queen master of optimism in the universe. And I am also now an author.

I am all these things and more. But I am not a victim.

I was 14 when things started to change, when my world began to twist and turn on this tornado of a journey we call life. It was a Saturday, and my mom and I had been invited to attend the screening of the new movie Penelope. We got in the car and began our drive down Sunset Boulevard toward the theater. My mom was on the phone talking to our close family friend, Dr. Katja Van Herle, who just so happens also to be sort of our family doctor. Bored, I turned to the window.

I remember thinking how splendid it all was: the stars, the night sky, and the perfect full moon that (being the foodie that I am) reminded me of the creamy filling of an overstuffed Oreo.

In that very moment of utter bliss and contentment, I felt something. My left eye began to twitch as a sudden, piercing sensation swept over the top of my eyelid. It was as though someone had dropped a weight on the top of my eyeball and I didn't know where it came from or how to get it off. In a matter of seconds it began to register that this wasn't a feeling I was going to shake easily and may be something worth discussing with a doctor, who so conveniently remained on the phone with my mom just next to me.

I motioned for my mom to let me talk to Katja, and after we exchanged a few words and I waited for her to pass me the phone, I couldn't shake this sense of eeriness. I spoke to Katja, who, after hearing my symptoms, restored me to a place of calm and told me not to worry "unless," she said, "the vision becomes fuzzy. Now go enjoy the movie!"

I sat through the entire film very uncomfortably as I tried to focus on the plot and forget that my eye continued to burn furiously at every blink. At home my mom prescribed me a few drops of Visine, and I was off to bed. Don't worry, I thought as I tucked myself beneath my covers, it'll be gone in the morning.

I could not have been more wrong.

If it were up to me, I would have waited until at least my 18th birthday to find out I had NMO. Or longer. Maybe I would have decided never to know. The timing for the big revelation kinda sucked. My parents had done their best to let me call the shots about being ready to hear any information. When it happened, it was accidental.

I came home and saw some mail on the counter in the kitchen. A letter, opened, was addressed to Mom, and I saw NMO as the subject heading.

There was no turning back now. In the body of the paragraph I saw what NMO stood for: Neuromyelitis Optica Spectrum Disease. And then as I scanned down below that, I saw that NMO was also known as Devic's Disease.

At first -- okay, for a while -- I was angry. This was not the way I'd planned spending my formative years, after all. But then I began to contemplate making peace with my enemy, strange as that sounds. Not that I had any intention of being lifelong friends, knowing as I do that Mom is in the trenches with the Guthy-Jackson Charitable Foundation, working on making NMO obsolete. Still, I had to find a way to mentally overpower my opponent and win this game, even if it meant accepting that we both had to share my body for the time being.

I've always felt that our family has a charmed life and don't feel that's been changed because of the unfortunate draw of the card that is NMO. It's not like when I got diagnosed the whole world came crashing down. And maybe that's just my view because I didn't know about NMO or its consequences right away. Because I was so oblivious, I had the luxury of being kept in this bubble, believing and really living like nothing had changed. The act of discovery since then has been a slow and steady process, so it's not like the rug has been pulled out from under me.

Other than the obvious increase in medical visits and frequent bouts of illness, I haven't seen anything about our journey as a family to make it feel less charmed. In fact, if anything, the diagnosis has only increased my awareness of our charmed life. After all, my parents' successes are making the Guthy-Jackson Charitable Foundation possible, along with the research that will result in treatment and a cure for NMO.

I'm proud to represent us, the NMO community, though there are so many other patients who have overcome their challenges better than I have. But this is the position that came my way, for better or for worse, and although I don't feel I deserve it, I have come to embrace it and try my best to use this newfound title for the betterment of all patients.

This piece is adapted from Saving Each Other: A Mother-Daughter Love Story, by Victoria Jackson and Ali Guthy. Available from Vanguard Press, a member of the Perseus Books Group. Copyright 2012

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