Dealing with chronic illness and daily symptoms, is challenging enough. Yet, there are times when life plays cruel tricks on all of us. The first time I came to this realization was when my diagnosis for a heart condition was being placed into my already overflowing medical chart. I knew better than to ask, “What next?” Because there could ALWAYS be something more added to the stack. But for me the real slap in the face came from the people I trusted in my life. How could ‘they’ not understand. ‘They’ being my doctor, my friends, or my loved ones.
After a move from Oklahoma to Washington state, I found myself interviewing neurologists. This was my first encounter with a ‘new’ neurologist. My previous one had been with me for two years from the time I received my Chiari diagnosis and was a migraine specialist. During my first appointment with Dr. ‘New’ he explained to me that Chiari is very common, it couldn’t be the cause of my symptoms and that I never needed decompression surgery. I was not only dumbfounded, I was horrified that he could be so brazen as to speak those words to me. He wasn’t even looking at my pre-op MRIs or reports!!!! In a moment of profound clarity, I smiled nodded and left as quickly as I possibly could. At that exact moment, I understood that it was a privilege to be my doctor. That MY doctor would understand that treating me means being part of my health care team. MY team, where I am captain. My doctor must have some kick-ass degree from some highfalutin school, but he will be smart enough to recognize that I know my own body better than he does. I went back to my primary care doctor and asked him to send me for a second opinion to another neurologist that wasn’t a quack!
Every single Chiarian who has undergone decompression surgery will get asked some version of the following question, “But you’re cured now, right?” This is when I have to remind myself that just because my friend doesn’t understand my disease, doesn’t mean they don’t care. Truthfully, they usually want me to live as healthy as possible and they don’t want to know that I will have difficult days ahead. But unfortunately, healthy people have a difficult time grasping chronic illness. I have now begun to explain that my condition is like a pissed off Tinker Bell. She’s hard to understand, flits all over the place, sore for all the wrong reasons and leaves a trail of sparks just to let me know where she’s been. Quite like Peter Pan, she just won’t leave me alone! My full-time job is to keep her quiet and happy, which is no easy task.
So I always try to remind myself that ignorance is bliss. That those that don’t know about Chiari are lucky, for this crazy disease has not had an impact upon their life. Through prayer, meditation, and journaling, I have learned that it is my job to teach others that even though I have been given this strange, bizarre, maddening condition I can still teach others that “We Can Fly.” So I will gather up all of my Lost Boys and take them on a journey they will never forget. And I must not forget that part of my journey in life is to figure out exactly how high I can fly while still being grounded by condition, even when it’s raining. So on the days that my condition has me grounded by symptoms and life is pouring frustrations down on me, I will find my bliss and dance in the rain. I’m sure it will piss that little pixie off.