A Girl Behind Dark Glasses

By: Jessica Taylor-Bearman

Narrated by: Queenie James

From a darkened world, bound by four walls, a young woman called Jessica tells the tale of her battle against the M. E. Monster. The severest form of a neuroimmune disease called Myalgic Encephalomyelitis went to war with her at just 15 years old. From beneath her dark glasses, Jessica glimpses a world far different from the one she remembers as a teenage schoolgirl. This true story follows her path as she ends up living in a hospital for years with tubes keeping her alive.

This harrowing story follows the highs and lows of the disease and being hospitalised, captured through her voice-activated technology diary called "Bug" that enables her to fulfil her dream of one day becoming an author. It provides a raw, real-time honesty to the story that would be impossible to capture in hindsight.

©2018 Hashtag Press (P)2018 Jessica Taylor-Bearman

The Story of a True Warrior.

Thank you Jessica for your very candid story about your battle through a Disease that should have a cure, and much needed recognition. I have severe ME. I have been through and continue to go through my own battle. I am trying to live a full life with a positive outlook about the life I have been given, and try to let go of the guilt and shame of being unable to properly be a mom to my children. I have been ill since I was 16, moderately and unknowingly for 33 years. After a traumatic car accident, I became severe and continue to do my own research and have gained much from others that are also in the same boat. Bless you on your journey and I wish you continued success and happiness. Your book will continue to help many!

This is so MUCH more, than one can begin to expect

Dont avoid this book. Dont roll your eyes if that is your ill informed reaction the subject of ME or like subjects on illnesses overlooked, "whined about" matters because if you do, you will miss out on a darned great read and most excellent listen.
Seriously!

This book is a very, very compelling read/listen. ME is serious and as anyone who has had M.E. or perhaps other illnesses or conditions like, "Aging," or Worse, "Female and Aging/Aged," and or a short list of so diagnoses commonly treated with suspicion, derision, prejudices AND (crazy making) gross dismissiveness by everyone from society as a whole to ones own nearest(s) and dearest(s) family and friends, and worst of all by our healthcare systems and healthcare providers...from doctors on high, even from the nosebleed height of Doctor Specialists on high in high places (Some really are all that mind you. Esp those in real top of the field of ME/cfs Clinical-Researchers...not refering to the PACE Research influenced as became prevalent in UKs NHS...depicted herein.) to often normally & generally decent and dependable, attentive to attentive enough PCPs, family doctors near oll of whom are practically universally ignorant about what ME, ME/cfs is, much less what ought and could be done and yet they will adamently tell patients that they are not suffering, or cant be experiencing that which we try to convey. so on so forth. Yes THat was a very very long sentence probably a run on and some.

What out Gov agencies NIH, CDC in the US and NHS in UK etc have not done from the start in mid 1980s (which was not actually the start of the M.E. of course, but most clearly OUGHT to have been the Start of Some Sort. A missed opportunity to have gotten at least a jump on this terrible disease so long ago, and an eye on the matter with money invested. Instead did literally anything but any of that which would have saved lives, livelihoods or at least reduced the degrees of suffering and of disability for very many along this time. Well I would have to write a book to explain that and one did it already. Read "Osler's Web." A really interesting book. Not a hard or slow read at all (tougher if your hindered by this disease as it isnt short and can rile up the juices even if you dont suffer M.E. etc!) Masterful Investigative Journalism and engaging.

The NEED to know about this Disease is great, but also about all the many ways how healthcare entities and providers all levels routinely fail to "Help but Dont Hurt," as the Author pleads. This happens from the low pay carer/caregivers to the top levels and in all the realms "HealthCARE," is NOT as ought or rather could and should be, all the while overtly very much being done as supposed to happen. (Not Good at all...All too often whether youve M.E. or, to placte and Save the Faces of NIH and/or CDC, "ME/cfs" or Not!)

Persons with M.E. esp are/have long been endangered in the hands of healthcare providers. The fault of this to a great degree lays at the feet of CDC, NIH, DHHS in the US. This does not excuse healthcare providers and healrhvate provider entities.

NEWSFLASH: Everyone is a risk for bad care, mistreatment, mismagement and just thoughtlessness due to bad policies and waaay out dated and wrong to start traditions in conventional medicine and even rehab practice(s). I pains me to say this as Im a healthcare provider (or technically was because ME/cfs has robbed me and all my would be patients too because I was changing things up and getting great results and outcomes for patients written off as permanently disabled, "problem patients," fakers and scammers so on so forth.

Good heathcare much more good AND humane based healthcare just does not happen very much at all and this is so as a matter of course and often also by policy, by training and how hc providers to be are ed/taught and how not taught and educated!

The implications and overt abuse(s) to small missed opportunity to have done good in any given moment or stage of this story by anyone involved apply to all persons well or ill; youthful and their parents to aging and aged. The more incapable, inexperienced, least informed, weaker physically-mentally-emotionally, lacking in confidence and reasoning skills, more aged or elderly, more alone and lacking anyone as protector/advocate, and dependent by degrees in any way a prospective patient is regardless of their diagnoses the more likely they will suffer by degrees via mistreatment and mismanagement, negligence, malpractice and abuse!

By degrees...small stuff dies add up!

Now I believe that we have highly knowledgeable and highly educated, most imformed healthcare providers but theres much to be wanting in the subtler aspects of clinical and entity practices....the biggest are in the ways of Seeing the patient as a person an whole person not by the parts or systems any given Dr, Therapist, CNA, Nurse, front desk clerk. Empathy ought to be mandatory training and possibly, mandatory as a natural character trait to get into training programs. It astonished me as a Student Clinician how much I learned that my clinical educators, supervisors etc...because I listened and I asked questions And attended keenly to answers and how much being trusted to do so resulted in patients directly telling me exactly what was wring with them what they most need to get well. These things at first flush esp to person not practicing this way can sound bizarre, wierd or impossible. patients know it so they dont say such things. Often they cant believe or realize what their Somatic Voice said.

Well Im off the topic. Points made let me add that this is

a stunningly compelling book to read for the humor, joy and si very keenly depicted, illustrated states of mind and power of mind, imagination, imagery and (some one name it..) mystical as commonplace [and IS so natural too] regardless "of what other names, or term or religion [which to me is a whole other and can be interrelated subject] but for some it is the same or must be i suppoese to each their own," on that...

This is a story of suffering and almost if not fathomless wretchedness and mistremeatment being endured by the author, the patients around her by varying degrees, her family. But what is the greatest part is beautiful, inspirational and not a bad doctor bad government trreatise (that happened is happening had been but the book is about the good and the doable and resilience.

I dont recommend reading or listening at bedtime! Too compelling to turn off and will make some feel the anger (the nearer you are to knowing about ME or suffer or know someone suffering from it or other so mistreated, mishandled etc...diseases, illnesses and causes fir losses of abilities and living. None is worse that that done to and as experienced by persons with M.E. and our socities families occupations from which we have become absent.

Dont avoid this book. Dont roll your eyes if that is your ill informed reaction the subject of ME or like subjects on illnesses overlooked, "whined about" matters because if you do, you will miss out on a darned great read and most excellent listen.
Seriously!

Accent too much for me

I tried this but cannot understand the British accent well enough to enjoy the book, so did not finish it.