A Thriver's Guide to Any Challenge
On the surface, Victoria Jackson is the American Dream personified: from a troubled childhood and unfinished high school education she overcame immeasurable odds to create a cosmetics empire valued at more than half a billion dollars.
Married to Bill Guthy -- self-made principal of infomercial marketing giant Guthy-Renker -- Victoria's most treasured role was mother to three beautiful, beloved children, Evan, Ali, and Jackson.
Suddenly, Victoria's dream life is broken as she begins to battle a mother's greatest fear.
In 2008, her daughter, Ali, began experiencing unusual symptoms of blurred vision and an ache in her eye. Her test results led to the diagnosis of a disease so rare, the chance that she had it was only 2%.
Neuromyeltis Optica (NMO) is a little understood, incurable, and often fatal autoimmune disease that can cause blindness, paralysis, and life-threatening seizures, and afflicts as few as 20,000 people in the world.
At the age of 14, Ali was given a terrifying prognosis of between four to six years to live.
After learning about Ali's disease, Victoria and Bill began a powerful journey to save Ali, their only daughter, including bringing together a team of more than fifty of the world's leading experts in autoimmune and NMO-related diseases to create the Guthy-Jackson Charitable Foundation.
100 percent of all proceeds from Victoria and Ali's book, Saving Each Other: A Mother-Daughter Love Story, directly support scientific and clinical research for NMO.
Below are Ali's inspiring words on coming to terms with the lack of control over NMO and tips to so many other patients on overcoming challenges.
Yes, it's true. The 2% deal of the cards is not always fair, especially when it comes to being given a rare orphan disease.
But as I learned, those same low odds can be overturned. How? Well, the following five steps have certainly worked for me and for others who've given them a try.
Hopefully they'll provide you with a starting place, if not a roadmap to thriving, to how you might create your own map.
The steps are: (1) Discovery, (2) Throw a Fit, (3) (In the words of my mom) "Put on Your Makeup and Get Out There!") (4) Don't Be a Victim, and (5) Remember: The Sun Will Come Out Tomorrow!
Step 1: Discovery
Know what you have! Ignorance can be bliss, but it's also a means of avoiding the situation.
Take your time, but confront your enemy, face the music, and then, in your own way, learn how to deal with the facts presented.
Step 2: Throw a Fit
Don't bottle your feelings, but don't allow them to take over your life. Stick to a normal routine, but allow yourself to balance that normalcy with the realities of your unusual/unique circumstances.
When someone says or does something that's insensitive -- even if it's the most minute comment -- if it makes you feel upset, be upset!
Allow yourself to have bursts of anger or fits of depression, as long as those moments don't start to encroach upon or ruin your normal life.
Step 3: "Put on Your Makeup and Get Out There!"
Don't let the reality of your situation or the every-so-often fits of depression stop you from living.
Lead a normal life and pursue activities or goals that are both enjoyable and alleviate you from the stress, anger, and confusion that surround your health challenges.
Step 4: Don't Be a Victim
Self-pity, self-judgment, and all other forms of internalizing a diagnosis like NMO are not the answer. Don't be the helpless Cinderella waiting for the magical Prince Charming (commonly known as the cure) to come sweep you off your feet.
As much as it pains me to say it, in the realm of NMO and other dire diagnoses, there is no time for the magic of fairy tales. You can't indulge in "if only" thinking anymore than you should allow for "what if" thinking.
Don't be a patient; be an advocate. Be your own Prince Charming, and be a part of the search for the cure.
Donate blood to the repository or be part of research efforts, talk to your doctors and other patients, and spread the word about NMO or other little-understood diseases by educating those around you.
Step 5: Remember - The Sun Will Come Out Tomorrow
Stay positive! Always try to find the silver lining. I know, sometimes it just doesn't want to be found.
If you can remember that everything you are going through is going to empower others to overcome their odds, that might help you remember that you are being part of the solution -- and that's a very powerful force to be.
"Never, never, never give up."
- Winston Churchill
Ali Guthy, a student at the University of California, Santa Barbara, has kept a journal since she was a young girl. At The Buckley School in Los Angeles, she served as co-editor-in-chief for her high school's award-winning newspaper, The Student Voice. She is also the managing editor of The Spectrum, the newsletter she created with the Guthy-Jackson Charitable Foundation. While at Buckley, she had record-setting achievements on the tennis court, finishing with an overall winning record of 165-22. Ali also received Buckley's coveted Head of School Award -- given to a student who demonstrated leadership, academic achievement, character, and service on behalf of the school and community. Ali has also been honored with numerous awards and in the media for giving a public face to NMO and for her leadership in reaching out to newly diagnosed patients and their families.