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: (In the words of my Mom) "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
The above is an excerpt from the book Saving Each Other: A Mystery Illness, A Search for the Cure, A Mother-Daughter Love Story by Victoria Jackson and Ali Guthy. The above excerpt is a digitally scanned reproduction of text from print. Although this excerpt has been proofread, occasional errors may appear due to the scanning process. Please refer to the finished book for accuracy.
Copyright © 2012 by Victoria Jackson and Ali Guthy