Shortly after I published my website for coaching, a supporter overseas shared the link in an online neurology publication. A number of people responded negatively, implying that I both faked the symptoms of Parkinson’s Disease and then faked the recovery. Some questioned the honesty behind my claim to be free of Sinemet and Requip for well over two years. They seemed to want proof that I am not secretly popping pills. I suppose that only someone who’s had the condition and then reversed it would be able to know the difference between being well and having chemicals provide a temporary appearance and sense of wellness, but the difference is a huge one.
The first sign to me of how extensive this recovery has become is that I wasn’t upset, didn’t feel the need to immediately retaliate or defend when my authenticity was challenged. I stand on firm ground and have nothing to prove. However, I do love both a good argument and analysis, so bear with me, if you will, as I explore the situation.
Among my Parkinson’s symptoms were tremor, stiffness, slowed movement, constipation, cramped penmanship, locked shoulders, occasional foot drag, dry eye, an occasional bit of drool, difficulty with balance and coordination, and some cognitive issues were starting to emerge. I, the teacher, was having trouble learning. Also, perhaps saddest for me, my writing muse had disappeared. I had dropped out of my beloved writers’ group several years earlier because my verbal skills were becoming as constipated as my bowels. It still amazes me that I have a blog. People had suggested it to me as soon as I healed, but I wasn’t ready yet to return pen to hand, fingers to keyboard. I needed some time to pass before once again sitting behind the author’s desk.
I am so grateful for everything I recovered, especially the desire to communicate via the written word. Attempting to view my situation from the perspective of naysayers, I get their point. If one is not ready to open and think outside the box, my good fortune may seem preposterous. But then who would fake the symptoms of PD, get the condition confirmed by two neurologists and a movement disorder specialist, receive prescriptions for Sinemet, Requip ( as well as Mirapex for a time), retire earlier than planned from a successful teaching career? Not only a fraud, but a very foolish one- if the purpose were simply to “get rich quick” from coaching people with Parkinson’s. Probably more effective to enter the lottery or play the ponies.
Also, in the winter of 2009 I submitted a spit sample to the Michael J. Fox/ Sergei Brin study, and was accepted. I don’t know what type of qualifying analysis, if any, they did before accepting me, but I’m on their roster. So: symptoms, medications, retirement, “23 and Me”*** – One would have to be an exceptional actor and strategist to pull off such a stunt. And for what purpose? To individually coach people with Parkinson’s Disease? If I were planning to be a “snake oil salesman” (one of the terms used by a skeptic in response to the link mentioned earlier) I think I’d be at least clever enough to select an area including a much wider population base and a less challenging condition than Parkinson’s Disease. So why am I doing this?
The more I learn about healing, the more I see that it involves self-love and becoming the authentic self. All my life I have been a nurturer, and perhaps, in some sense, a healer. From 8th grade through 12th grade, I nursed my mother, bed-ridden with spinal cancer. Bringing her the bed pan and administering morphine injections were part of my daily routine from ages 13 through 17. Then, my younger son was born on my 28th birthday. Although he was beautiful, and a robust 9-pounds, something was off neurologically from the get-go. Within a few years he was diagnosed with autism. It was either “think outside the box” or succumb to the neurologists’ suggestion to institutionalize him because his behaviors were so difficult and because, it was claimed, he “wouldn’t know the difference.” Here I learned to become a resourceful advocate and researched alternative methods. In his teens, Justin received auditory integration training and sensory integration training, non-invasive alternative approaches which greatly enhanced his functioning level. After that, he then had the ability to share his story on The Panel of Americans which presented to local schools and institutions. It was my advocacy for him that prepared me to deal with Parkinson’s Disease later in my own life. I also learned from Justin that all life is worthy and purposeful and that our greatest challenges can also become our greatest teachers.
So when my own PD came along, I had a bit of a guide to follow, and I handled it much the same way as Justin’s autism. I treated the condition as a visiting expert, teaching me about myself, life, risks, and spirit. Perhaps I didn’t realize how unique my approach was. I am grateful for the struggles of my earlier life, which equipped me so well to deal with the Parkinson’s challenge.
So it seems working with people with chronic or terminal conditions has been a part of my life’s journey, and healing myself has taught me that I have become quite good at it. Why would I withhold this ability? Certainly not out of fear of being called a few names! The authentic self seems to be fully emerging, and with it comes a burning passion to share my process with others dealing with chronic debilitating conditions, to help them empower and liberate themselves. When I began reading Luke Chan’s book’ “101 Miracles of Natural Healing” and saw what qigong could do for people with cancer, heart disease, arthritis, lupus, depression, diabetes, etc., I thought: “If it can work for them, then why not me?” And I urge others to ask themselves the same question. My story is not the only one of alternative healing from Parkinson’s. Check out Dr. Robert Rodgers’ book, “Pioneers of Recovery:.” Several others in there used qigong or taichi, and there are also methods presented involving diet, other forms of movement, homeopathic remedies, dental devices…The list goes on.
My goal here is not to change any minds, but to simply examine a situation analytically and rationally, and to share a bit of my own story behind the healing. I am grateful to those who raised the issue, because it gives me the opportunity to check in with myself. In some strange way, my biography is starting to make sense. Perhaps one purpose behind suffering is to learn to overcome it when possible, and to learn to be open to great possibility. How can that hurt anyone? I feel only love and compassion for those not yet ready to explore their identity beyond diagnosis. And I am grateful for their voice. They raise issues that are most worthwhile to explore. May all beings be blessed and happy. This is an authentic intention. Remember: “Just when the caterpillar thought the world was ended, it became a butterfly.” Haola!
***It would be natural to suggest I inform the “23 and Me” group about my recovery. I have sent several emails which have gone unanswered. Currently, their major focus seems to be pharmaceuticals. Perhaps there will be an interest in the future.
11 thoughts on “Fakir, Faker, Fraud, or Simply Bianca?”
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I love the image of PD as a “visiting expert!”
Thanks, Anne. Hope I get to hear you at the harp again in Santa Fe.
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