Thursday, June 2, 2016

Reading Therapy aka Bibliotherapy

As most of my readers know, I have Chronic Lyme Disease and so my sewing work is often mixed with periods of reading as it is another great "therapy".  When I don't feel good and need to be horizontal, I tuck myself into bed with a good book, but I sometimes don't pick just one, but rather a cluster of books that meet my needs in a personal way.  I learned in my graduate education studies that this is called Bibliotherapy and is not only great exercise for my brain but can also meet my psychological needs as well!

A friend recommended H is for Hawk by Helen MacDonald. It is a beautifully written autobiographical book about the author who while in the midst of grieving over the recent loss of her father, writes about training a young goshawk. Helen's interest in hawking and falconry started when she was young, and was supported by her father. Throughout this book, the author makes frequent reference to one of her favorite books of her youth: T.H. White's book, The Goshawk. It is a book about White training his own goshawk, and she later realizes that she likely preferred this book over others, as the hawk flies away in the end, instead of dying as in most children's stories about pets or animals! Although she is fond of T. H. White's King Arthur series as well, one of which is The Sword in the Stone and loves Merlyn and his magic, she appreciates that White falls short when it comes to properly raising his goshawk and she learns that this was likely due to his own harsh upbringing.

Not unlike White's character, Wart, who changes into different animals, Helen McDonald becomes almost "at one" with her hawk, Mabel. She sees and writes with a keen vision that is rather"hawk-like". Her book reflects on the love and loss of her father, her love of the English countryside and its history, her grief and her own shortcomings. She is very open, honest and critical of herself in raising her hawk. The reader cannot help but identify with her journey as well as learn and appreciate the power and awesomeness of hawks and birds of prey. Mabel's care and training help Helen to focus, grow and heal. It is a book that still has me thinking about my own life and losses and just how precious and short our lives are.

I was also recommended  a series of quilting novels, starting with The Quilter's Apprentice by Jennifer Chiaverini.  Wanting to quilt and not always feeling up to it, this book became a great escape.  I categorize this book as "a feel good book" as a grief-stricken woman returns to a full and rich life through friendship and quilting.

I understand that there are about nineteen books in this series and they need to be read in order as each continues to develop the characters as they grow with and through the love of each other and their common bond of quilting. I am going to continue to check them out one or two at a time and keep feeling good!

Last, but not least, another friend suggested I read Plague, One Scientist's Intrepid Search for the Truth about Human Retroviruses and Chronic Fatigue Syndrome (ME/CFS), Autism and Other Diseases by Kent Henkenlively, JD and Judy Mikovits, PHD.  I hoped that this book would help me to better understand the political issues that surround some illnesses, and it did. It also confirmed my reality of how difficult it can be to find doctors that practice under threat of harsh retribution of not being in sync with the CDC (Center of Disease Control).

A few years ago now my doctor was forced to drop his Chronic Lyme patients and though I found a doctor willing to prescribe medications so I could continue my long term alternative treatment, I am now off of it and my search for an in-state Lyme-literate doctor has resumed. It is proving to be more challenging than ever and for good reason. A well-known Lyme-literate doctor in another state explained to my friend that Lyme-literate doctors in our area are heeding the warning of what happened to my doctor who was harshly treated by medical authorities in this state.  While he was allowed to continue practicing medicine, he was reassigned to a clinic in another area and his large practice reduced to only a part time position. He practices under strict guidelines that he is not to treat anyone with Chronic Lyme. Many, including me continue to mourn the loss of his care.

Although recent legislation passed in this state allowing doctors to treat Lyme Disease according to the patient's needs, it is clear that the medical board of this state isn't supportive of long-term treatment of Lyme Disease, making it such that the only care I can find is by "alternative sorts of practitioners". I don't for a minute negate the value of their care, but I do wonder where the Lyme-literate M.D's have gone?

Judy Mikovits' book validates that doctors, whether practicing in clinics or research, like herself are indeed being removed from their positions when they get too close to "the truth" regarding certain diseases. Her research found that a group of retroviruses, were found in patients with ME/Chronic Fatigue, AIDS, Prostate Cancer and Autism as well as other neuro-degenerative diseases. Her discoveries, instead of bringing her fame and fortune brought on a series of events that would best be described as a horrific nightmare!

Judy Mikovits was abruptly fired from her position at WPI (Whittemore Peterson Institute for Neuro-Immune Disease at the University of Nevada, Reno), and was then arrested and jailed without being allowed to post bail for a week and then subsequently accused of stealing her own research notebooks, after supposedly signing a document indicating that in the event of any future discharge from her position, they would belong to the institute instead of her. She noted that this was nothing she would have ever signed. The handwriting on this document was analyzed and confirmed to be a forgery, though she never got her day in court to prove her innocence. She was denied legal due process and fined a sum that would financially devastate any research scientist.

The case would be dropped only if she chose to give up her research notebooks and deny her work. Her research was her life and to give it up was akin to annihilating her life's purpose. The notebooks were not returned to her, but  she wouldn't refute her findings nor issue apologies, and why should she? She had done nothing wrong! She was supported by some of her colleagues, though they were careful that future research "tiptoe" around the powers-that-be. Sadly she never returned to the level of research she had done before.

Research continued regarding ME/Chronic Fatigue, and slowly was confirming much of what Mikovits had already discovered, though they were careful to not be so bold about its implications to present clinical care. She and her colleagues noted that the CDC (Center of Disease Control) quickly did their own study to disprove Mikovits findings, though the population they studied was completely different, likely so as to deliberately avoid finding similar results. The CDC's research appeared to fit the government's biases which seem to control and manipulate the funding of future research as well as clinical practice.  Even in the best of circumstances in other areas of medicine, where research is not suppressed, it often takes decades before changes are made in clinical practice.

This book is no easy read!  It is loaded with facts about Mikovits' research as well as the research of her colleagues, along with reports about their scientific meetings from which further research is planned. It is also her story of working for Harvey Whittemore and his wife, Annette who originally hired her to study ME/Chronic Fatigue to benefit their disabled daughter. They hired Judy Mikovits, a leading and dedicated researcher to expedite finding a cure.

Mikovits had all but become a member of their family only to find herself abruptly fired after publically reporting that a test being used to screen for viruses in the Whittemore's clinic was not reliable. Although Mikovits wasn't assigned to oversee their clinic, she could not be dishonest when asked about the test's effectiveness. She suddenly found herself to be the Whittemore's enemy and struggling to save her reputation as an ethical and honest research scientist while her life became consumed with fighting unjust legal battles that threatened to devastate her career.

Harvey Whittemore, according to Google is currently serving time for illegal campaign contributions to Harry Reid, though it is clear that their was no justice served for what he did to Judy Mikovits and her career. It is likely that she and Kent Hickenlively have written this book in a factually detailed fashion to tell what was never allowed to be told in a court of law. It is a very technical and complicated story of power and politics mixed with scientific research. Mikovits' research conflicted with not only the very rich and politically powerful Whittemores but with the CDC (Center of Disease Control of our government),though perhaps they are now one? Politics and power apparently have the authority and where-with-all to control and manipulate scientific "truths" being discovered and/or communicated to the public.

Corruption at the highest levels of our government appear to be thwarting honest, ethical and unbiased research into some of the most serious diseases of our time.  This reality defies all logical explanation, but it is clear that ethical and dedicated doctors, research and clinical, are being thwarted from serving those with illnesses that aren't "politically correct". Judy Mikovits' story as well those of others in this field is compelling evidence that there is a conspiracy to cover up some sort of damning evidence of possible links of these new diseases to retroviruses that are being activated in many patients by immunizations. There are still more questions as to whether retroviruses were actually accidentally created  in early laboratories in the process of creating immunizations when mice were still being used..

Mikovits' colleagues say that she was so honest and dedicated as to be "naive to the politics and power" that surrounded her. Reading about, as well as experiencing these sorts of bizarre injustices to doctors in the field, and seeing that my choices are becoming more limited all the time regarding finding proper care, have caused me to seriously entertain "conspiracy theories". I have also experienced the "ferocious" dispute of mainstream doctors to even accept that Chronic Lyme Disease exists. I have benefited from on-going treatment by the doctors who do believe in it (known as Lyme-literate doctors) and am now no longer wanting to accept merely palliative (feel-good) care by mainstream doctors.

My favorite aunt, who was a psychiatric nurse used to laugh and say, "Just because you're paranoid, doesn't mean someone isn't out to get you"! Their is much truth in this statement, though I am certain that the government isn't specifically targeting me, but they are for sure targeting doctors who are either researching or treating my sort of illness! What is happening is not only criminal for these doctors and their scientific success, but criminal for the patients that wait for proper research and care. I couldn't help but note that my former doctor was not only treating patients with Chronic Lyme Disease, but was in process of researching Lyme's link to Autism. Perhaps my doctor was getting too close to truths that might call into question current medical practices?

Judy Mikovits' is clear that she has found strange maladies that have manifested themselves in the past several decades. Her research proved that these are more than psychological manifestations of complaining patients, though many doctors blame the patient for what they can't successfully treat. After her scientific findings, she believes, as I do, that there are physiological bases for them. Her fellow colleagues have not discounted her heroic and brave efforts to "tell it like she sees it", and those who care have come to see that these diseases completely derail a patient's immune system and concur that immunizations or illness seem to have activated retroviruses that then start this cascade of decline.

Whether researchers agree or disagree with her results is NOT the issue. In order for research to be effective, it must be open and unbiased, and it seems that our government and it's health administrations are anything but! Their research is clearly biased as is their funding of further research. Manipulation to serve themselves appears to be stifling progress instead of allowing research to form its own facts, truths and future direction whether or not it conflicts with present and current practices. Without unbiased research, there is no hope for finding cures, saving a God-given miracle with this family of autoimmune diseases!

This book was anything BUT a feel-good story, but like Judy Mikovits, it is time for my "Pollyanna Jane" naivete to look at the real world. Truly, the world is full of talented scientists and doctors that care and likely would be on their way to finding a cause and cure for these diseases if the government was NOT standing in their way. It is not only hard for me as a patient with one of these illnesses, but I also am now appreciating the risk to dedicated doctors who find themselves in a political and corrupt medical system where power and greed usurps and even destroys them should they push too hard to discover truths like Judy Mikovits and others have done!

While finishing writing this blog, I received a story on Facebook about a granddaughter of a high school classmate of mine. She made the news in Colorado as she is heroically fighting Lyme Disease for three years now and says that Lyme Disease is now her cause!! She is but a child!! I appreciate that I am now seeing four generations of these related illnesses (ME/Chronic Fatigue, Lyme Disease, Autism and others). It is time that truth rules over cover-ups and manipulations and that these illnesses receive priority regarding funding research,  no matter what current practices must be potentially altered! How many more generations will we let these diseases debilitate our immune systems, and shorten our lives or get passed to future generations?

(Dedicated to you, V.H..."because you asked".  with love, jane)
(Also dedicated to my former Lyme-literate doctor for serving us with courage and conviction! Sadly I wish I would have known then, what I know now!!  I would have better understood what he was facing by treating me!)