The time is right for me to tell you this story, so I fight off that familiar heavy force of inertia that tries to hold me back. Life’s unexpected changes and details have made their attempts to halt my momentum and send me backward— or maybe downward into a “gradual decline into disorder”— which is not inertia, but entropy, by definition.
Just what is inertia? What is entropy? In my human emotional experience these two are a tag team of forces that set out to unwind your resolve and drain away your power. Cunningly, and with my agreement, this duo took up a permanent residence in a small corner of my life in the Winter of 2009. Then slowly grew, claiming more and more of me.
In January of 2009 I laid down with a terrible three month flu, and got up with a different life. Through months of high fever and a bone-rattling cough I waited for my health to return, as it had always done before. But somewhere in the dark of one of these nights some little pact was made just below my conscious awareness. Somewhere in the dead of night I gave up and let these forces take their course. Once being a person described as “willing to charge hell with a bucket of water,” I was now a helpless and exhausted collection of maladies and mysterious symptoms that I could not seem to overcome.
From this flu came terrible back pain, then a slight tremor, then rigidity, uncontrollable shaking, and loss of strength on my left side. My hair started to fall out, I had gallbladder attacks, I lost my sense of smell and sense of balance, I had very little energy, I couldn’t sleep, I couldn’t stop sleeping, and then there was the depression. After seeking every treatment I could imagine over several years time I found myself face to face with a diagnosis, one that I adamantly denied for one years time, but one that I have now had to accept. The name this wretched overstayer calls itself is a name synonymous with inevitable decline. Its name is Parkinson’s Disease, but I recognize it as “the Nothing.”
The Nothing, according to Michael Ende in his book The NeverEnding Story, is that force which represents human apathy, cynicism, and the denial of dreams. A force that eats away at possibility and destroys hope. In his book, the Nothing destroys Fantasia, the land that represents the endless potential of the human imagination and the capacity to build from our dreams and ideas.
What more is left to imagine when you hear the words “incurable,” “degenerative,” and “neuronal cell death?” How ready are you to dream big when your body no longer obeys the simple commands of basic movement?
I rejected the idea that my symptoms were PD for four years and wrestled this enormous black hole that was such an inviting space to collapse my will into. I was convinced that my symptoms were due to earlier spinal injuries and the resulting misalignment and possible entrapment of nerves. My digestive issues seemed unrelated and I chose to address them with herbal remedies, eventually with great success. My falling hair could be attributed to menopause and I was able to curtail this and reverse it with herbs also.
The rigidity, the shaking, and the weakness were a different story. At first they were intermittent and relieved by chiropractic care and rolfing but over time they got worse, and I got worse. I was always tired, puffy and bloated, with an aching back and injuries from losing my balance and falling, and a horribly painful frozen shoulder. Flat-footed and shuffling, with a frowning mask on my face, I was growing older by the day.
Having PD is like having some alien entity take over your body and direct it against your will to perform movements that are against all logic and practicality. It is a maddening exercise in nearly constant frustration. The very worst of it though is an overwhelming sense of hopelessness. The daily message of this vast Nothing, as you witness your own deterioration, seems to be “just give up.”
I had pretty much given up. Were it not for my persistent son arguing that my health was indeed in my hands I may not be writing this same story. He advised me on diet and exercise and recommended practitioners in his holistic circle. I went in search of more “new and different” health practitioners to answer my questions and help me get control of my symptoms.
Along the way I encountered several modalities that helped manage my symptoms, and finally I found someone in a controversial new field called “functional neurology” who changed the course of my illness for the better.
From mid June 2013 to today, as I write this in mid November 2013, I am a different person. My face appears lively and alert and I look forward to waking up in the morning. I no longer stoop and can rise from a chair and stand upright without pain. My shoulder has regained nearly all of it’s normal mobility and is pain free. I have lost 30 lbs and have gained energy. My digestion is once again normal and healthy. I have regained my sense of smell, and more importantly, my sense of purpose.
My sense of purpose has a specific goal, and that is to recover from Parkinson’s Disease, to recover fully and to support others in doing the same. I have heard again and again that it is an incurable disease. I am here to tell you that this message of no hope and no possibility, this message that cements us in terror, is the voice of the Nothing. I hear it less and less these days but it still sometimes speaks with authority, insidiously creeping in despite all attempts to tune it out. If it manages to catch me off guard and pull me down, I reach out and grab hold of it. Once again we are engaged, wrestling, but now I am winning.