A young woman decides she’d like to spend time traveling abroad in Italy. She researches all of the right places to visit and then buys her plane ticket. She takes a language course in Italian to become proficient and signs up for a cooking class so that she can appreciate fine Italian cooking. She reads up on the great works of Italian art, culture, and history, becoming somewhat of an aficionado in all things Italian. She boards the plane, and settles in for her much anticipated trip abroad. She dozes off, and wakes up as the plane is touching down. The pilot comes over the loudspeaker, and says, “Ladies and gentlemen, it is my pleasure to welcome you to Germany.” “Germany!”, she exclaims. “Why are we in Germany?” She doesn’t understand how this could have happened. Her plan was to land in Italy, and that is where she should be at this very moment. She knows nothing about Germany: she doesn’t understand the language, has no appreciation for the art or history, and doesn’t like the food. The airlines apologizes for the mistake, but regrettably can offer no further assistance; Germany is where they landed.
What is she to do? She could kick and scream, demanding that the situation be resolved. She could waste valuable vacation time and money trying to right the injustice. She could refuse to leave the airport until she is re-routed to her original destination, no matter how long it takes. Or she could adjust to her surroundings, learn a few things about Germany, and attempt to live well for the short time she has in this new, foreign land in which she’s found herself.
Welcome to Germany.
Life with Lupus isn’t what you planned for nor is it anything you know about. Yet here you are, stuck with a confusing, chronic illness that can debilitate, inflict pain, and make you suffer miserably. What are you going to do? Kick and scream and fight your way until you don’t have the disease anymore? I tried this tactic early on in my struggle with Lupus. I downright revolted, refusing to give in to the disease. I tried to deny the fact that I even had it, living with complete disregard to its limitations. It was like speaking Italian in Germany, and it wasn’t very productive. Unlike the benign mistake of speaking the wrong language, though, Lupus was a potentially fatal, chronic illness, and I was kicking and screaming myself to death.
At the time, I thought “living well” was defined by the things that were important to me and that I was proud of: my high-paying job and being in a position of authority; never having to ask for help; contending for the “Multi-Tasker of the Universe” title; pretending not to be afraid of anything. I was convinced that an allegiance to this way of life was paramount for triumph over Lupus.
After my diagnosis, my steadfastness never wavered, but my health did. Eventually, I was forced to either re-evaluate “living well” or stop living at all. Realizing the seriousness of my predicament, I chose to revisit my definition. As such, I uncovered something I never thought existed, a life after Lupus, only better. Much to my surprise, I found that life could be physically, mentally, and emotionally pain-free, if I allowed it to be. I made a choice, a decision that would ultimately affect the rest of my life. Some days, the consequences of my choice seemed to be as painful as the suffering I already experienced. But in other ways, it was the greatest decision I would ever make. I decided to begin living well with Lupus.
I learned as much about the disease as I could. I attempted to speak its language and adjust to its needs, making changes and sacrifices along the way. My life was different, for sure. But no doubt, it was better. After all, I was living well. Before, I wasn’t living at all. The pain, swelling, fatigue, physical limitations, failing organs and deteriorating spirit weren’t allowing me much of a chance to live. I was due for a change.
At present, there isn’t a life’s ambition that I sidestep, avoid, or sacrifice. The world is at my fingertips, and I feel as though I’ve regained a life that I thought was lost forever. That's because today, I’m living well.