I would like to say that Lyme Disease does not define me, but as I look back I can see that it has certainly defined my experiences & trajectory. As I sit here now, in the middle of my life, I am a single woman who barely graduated from high school, never finished college, never established a career or made a home. The theme of my adult life has been therapists, then doctors, then Disability forms. On the flip side, I have a wealth of knowledge about herbs, nutrition & coping skills. And in between collapses, there have been some good times. Good friends. I have racked up some good stories. The subtext, however, has always been of discomfort & struggle.
I think what truly does define me is how I have handled what has been given me. I have found, to my pleasant surprise, that I am intelligent, curious, ingenious, independent, optimistic, persistent & resilient. At every step, I took new developments & information as clues to eventual health. I never felt defeated, only more knowledgeable. When I couldn’t get the answers I needed from people that I thought should know, I quickly went looking for them somewhere else.
It took many years for the picture to unfold. Initially, the innate insecurities of a teenager caused me to be embarrassed by my awkward & scattered thought processes. I was quick to see myself as just not as ‘cool’ as everyone else. This began many years of therapy in an effort to ‘fix’ myself so that I could be the person everyone was expecting me to be. Therapy lead to more introspective Spiritual work. Luckily, a recommendation lead to diet suggestions, which eventually lead me to realize that there might be something more physiological going on.
This was the beginning of 10 years of cutting out & adding foods to my diet, switching supplements & seeing practitioners. Each time some small thing changed, I thought, “Eureka! I have found it!” I was sure I was perfect and jumped right back into living a full life. Each time, it was short lived & the recovery took longer. Clearly, I had no idea what real health felt like.
Along the way I was diagnosed with Chronic Fatigue Syndrome, Fibromyalgia & Bipolar II. I also lost several jobs, houses & relationships. Each time I picked myself up & desperately tried to return to my life.
The end of 2009 saw the loss of another job, another total collapse and the final dwindling of the inheritance that had essentially been financing my life & my search.
In desperation to get Disability paperwork signed, I reluctantly made another doctor’s appointment. In a fortunate turn of events, I happened upon someone who heard what I said & didn’t immediately dismiss me as the far-too-common case of modern day “just plain worn out.” Even though I hadn’t gone looking for a Lyme Disease expert, I had found one. She simply said, “You have Lyme. We’re going to test you.” That was the only thing she wanted to investigate and damn if she wasn’t right.
The day that they delivered the results, I had the expected sense of relief in having a diagnosis coupled with distress of the enormity that I knew Lyme Disease could be. As I sat in the office having yet another small break-down, the NP leaned over & patted my knee. She said, “You should feel lucky. By the time that most people that have what you have get to us, they’re in a wheelchair.”
As I pondered this later in the day, I thought to myself, “It’s not luck that allowed me to walk out of that office today. It’s all the work that I’ve been doing every single day for as long as I can remember just to be functional. It’s everything I’ve learned & everything I’ve given up. I walked out of that office today because I worked hard to be able to do so.”
And I’m still working hard, every day. The diagnosis allowed me to focus my efforts in a way that has produced great progress, but I am recovering from years of deterioration. Like termites… even if we get the little bugs out of the wood, the house still needs to be rebuilt.
And that’s where I’m at. I don’t know if the bugs are eradicated or not, but I feel like I’m in the rebuilding phase. I have a sense of self & sanity that I have never experienced before & each year I am more alive than the last.
Along the way, I was told by an astrologer that I am a writer. “Every time someone asks you what you do,” she said, “tell them that you’re a writer.”
This was a surprise to me. I surely didn’t see myself as a writer. I had studied Mechanical Engineering when I was in school. It suited my over-active, almost compulsive need to put things in the right place & make sense of them. I excelled in left-brain subjects like Physics & Calculus, but barely made it through English Composition.
My life’s trajectory, though, has made me thoughtful & contemplative. It has forced me to see the big picture, be more abstract & flexible in my thinking. It has heightened my intuition & broadened my understanding. The more I lived, the more I found myself philosophizing in my head, efforting to compose my theories & explanations in a way that someone else might possibly understand.
Unfortunately, whatever it was about my particular disease that kept my experience so linear in college was still making it difficult for these thoughts to make their way onto paper, or keyboard, in any cohesive way. I would hear something beautiful being written in my head, but as soon as I sat down, it was gone. On top of that, there was the sensitivity to my environment that made me want to hide from the world instead of seek interaction with it.
Luckily, I had lots of experience designing web sites, so that’s what I did. Over & over. I created this Blog in September of 2010. It has seen many face lifts since then. Every time I had too much manic energy, I would focus it into a redesign.
As I get healthier & my symptoms improve, though, the writer in me is able to emerge. The words in my head are finally able to make it out of my fingertips. My fear of the world seems to be turning into a desire to communicate.