The Next Adventure: Time To Meet The Editor

Next week, I hope to start working with an editor on the first draft of the first chapters of The Health-Care Survivor’s Story. I am looking forward to receiving the first feedback about what I have written, so far, but I must admit it makes me a little nervous.

Until now, My Serrapeptase Adventure has been a deeply personal journey, which I have been privileged to share, in short excerpts, via my blog, on radio, in articles, and even in someone else’s book; Robert Redfern’s, The ‘Miracle’ Enzyme Is Serrapeptase (2009). The prospect of sharing my story in more detail is exciting, but giving it to someone to edit is somewhat daunting.

I thought that the greatest challenge of writing the early chapters would either be finding enough to write, or, more likely, finding and verifying the medical and scientific information, to explain how *Serrapeptase could, so dramatically, improve my health, and even help me to meet the challenge of Cerebral Palsy. Since childhood, I had been taught not to think of Cerebral Palsy as a health problem at all. After all, it is a condition and not an illness, so my family, teachers, doctors, and therapists did not want me to be defeated by the idea that I was ill.

Once again, my adventure surprised me. In fact, the hardest thing to do has been to fill in some of the gaps in the earliest days of my recovery. The days and weeks in which *Serrapeptase freed me from the tyrannical grasp of a toxic cocktail of prescription medication, were thrilling, fast-moving, and utterly unexpected, so I only made brief notes in my diary, which, at the time, I had no intention of sharing with anyone. It was a diary, which had previously been a list of medical appointments, a litany of deteriorating symptoms, worsening reactions to medications, and my friend’s fading hope for my future.

When my condition began to improve, and my friends began to notice the change, I recorded it in the same sporadic manor, never thinking that the details would be so significant, many years later. It is also worth remembering that a hand-written diary was a massive challenge for me to write and even to read, because my eyesight, visual perception, and manual dexterity were all far worse than they are now. With this in mind, I am sure you can imagine that filling in the detail has meant wracking my own memory and those of friends and professionals, who shared those times with me.

Some people might be surprised to think that my memory of that time was not as detailed as it could have been, but I am not surprised at all. There was so much happening to me, most of it was unexpected, and much of it was not well understood, at the time, even by the so-called experts.

I have enjoyed going on a journey of discovery, as I have been reminded of everything that happened to me, and learnt how, and why, such an adventure was possible, and, more importantly, how the improvements in my health have been sustained since January, 2006.

The Health-Care Survivor’s Story: First Draft Expected

I hope to have a first draft of the first four chapters of The Health-Care Survivor’s Story, ready for proofreading and initial editing by the end of February 2014.

The First Four Chapters

The first four chapters of the book tell the full story of My Serrapeptase Adventure in much greater detail than is provided by the website, by setting my story in it’s medical context, in order to explain my recovery from the damage inflicted, first by cerebral palsy, then, by a toxic cocktail of prescription medication, and in turn, how my recovery enabled my improved eyesight and visual perception.

Later Chapters

Since the allopathic medical system suggested that my eyesight and visual perception were irreparably damaged by cerebral palsy, later chapters will examine how any improvement has been possible, and why the conventional ‘wisdom’ of western, pharmaceutically  dominated medicine makes doctors and other specialists so unwilling to recognise the true healing potential of the human body, when it is given the right environment and nutrition.

And Finally…

Finally, I will explain how and why I believe that:

For me, freedom from prescription medication has been the freedom to live a life that is so much more vibrant than the mere existence, offered by allopathic medicine. Disease control and even symptoms management both have their place, and I have benefited from both, but they must never be confused with health care.

I am in no doubt that each person who gave me medication, did so with the best of intentions. The more I learn about the pharmaceutical industry and its undue influence upon what most of us, in the UK, think of as ‘the health service’, the more convinced I become that many of the good people who work within the allopathic health system, often feel as trapped by its enveloping power as many of its patients do.

I will continue to choose a natural approach to sustain my own good health whenever It is available to me. It is, however, important to stress that I am not opposed to medical treatment, at times and in circumstances where it can be shown to be necessary as the most appropriate response to a traumatic injury or other health emergency. As I have said before, I have benefited from medical treatment and surgery throughout my life, but My Serrapeptase Adventure has taught me to re-evaluate the true meaning and power of health care.

I believe that a naturally sustainable approach to good health should always be my first choice, because naturally good health is the state in which the human body functions at its best, and to which it will return as soon as it is given the right nutrition and environment in which to do so.

Clearly, this approach still provides a defined role for medical professionals, clinicians, therapists and nurses. I believe that it is the duty of every one of us who values real health care to encourage and also to defend people who have dedicated themselves to providing it or educating us about its potential, wherever we find them, even within the allopathic system.

We must make it clear to the pharmaceutical industry that good science must become, once again, the powerful servant of good health that its pioneers knew it to be. We must not allow ourselves to confuse a thriving pharmaceutical industry, with the provision of safe and effective health care.

It is challenging enough to sustain and, if necessary, to return to a natural state of good health. No one should ever have to consider whether or not they may need to fight the health care system itself in order to ensure that it is focused upon providing real, safe and effective medicine and the most precious gift of all, people with the talents and compassion to care for others in need.

Update

Following discussions with friends, including other writers, I have decided to set a new target date for completion of my first draft, at the end the end of 2015l. This will allow me to include the later chapters, which are less separate from my own story than I thought they would be.

Introducing The Disability Maze Books

The Disability Maze Books is a series of books poses a number of significant questions and explores several specific answers as well as ways of thinking, which encourage innovative responses to the challenges of the positive assessment of the individual needs of people with disabilities.

When I started work on these books, colleagues and friends asked me if I wanted to replace the assessment systems with which we are all familiar, with one of my own. Many of them also wanted to know where my focus would be set. Would I concentrate on the fields of education, social-care, or the health system?

My hope is to encourage a holistic, positive, approach to the assessment of individual needs. There is much evidence to suggest that assessments carried out by professionals in the fields of education, social-care and health, often have a negative focus. In simple terms, the aim of many forms of assessment seems to be to highlight limitations and to focus on the things that someone finds difficult, or impossible. This approach is often referred to as ‘the deficit model’.

My argument is not that the assessment process itself is negative. I believe that the problem lies in the limited way in which the information given by assessments is used. There is widespread reluctance to look beyond any deficits, which quite accurately, may be identified.

One reason for the popularity of deficit modelling is that it gives easily predictable and replicable results. There are obvious advantages for assessors with this approach. The assessor knows, in advance, that someone with a given condition is likely to respond in a particular way during the test.

The major difficulty with deficit modelling arises from this same predictability. It is far too easy to allow our familiarity with given conditions, and the test procedures, to guide us towards familiar responses. The danger is that conclusions and recommendations are not drawn from test results. Instead, recommendations are made from a predetermined stock. In short, deficit modelling can become a short cut. Instead of working to find the most appropriate course of action for the individual, this approach encourages us to decide which of our stock responses an individual can be made to fit. In basic form: if you have condition A, B, or C, then you need solution 1, 2 or 3. This approach quickly fails when the individual’s needs cannot be standardised. If someone has conditions A, C and F, for example, the predetermined model suggests that they would need three separate solutions simultaneously, solution 1, 3 and 6.

The problem occurs when multiple solutions are in conflict. There has been a tendency, for many years, particularly within special education, to concentrate on the dominant condition and to make some effort to accommodate the others. In turn, this has meant that the dominance of one condition, often leads to other needs not being addressed in the best possible way.

Replacing the deficit-focused approach requires us to add new ways of thinking to our established methods of working. Clearly, we still need to identify the things that individuals find difficult or impossible, and to identify limitations. It is my contention, however, that having done so, we should continue the assessment process to find any skills and abilities, which might indicate possible solutions.

The new element of a positively focused assessment will consider the impact of the individual’s needs as well as that of our recommendations. An impact model takes full account of the consequences of our recommendations on all aspects of a person’s life and includes consideration of the impact upon family members, friends and colleagues, whose lives may be changed when a person with a disability gains a new skill or level of autonomy.

The word ‘assessment’ conjures up an adverse emotional reaction in many people. We have all undertaken some form of an assessment, for instance when sitting an examination, and many of us have found it a distinctly unpleasant experience. Why should we assess people? Even more to the point, why launch a series of books on the subject?

Disability can limit the range of an individual’s communication, and his or her degree of independence in day-to-day life. This often means less is possible, less expected, less attempted and less achieved. Limitation breeds the assumption of further limitation. HRH Prince Charles, Prince of Wales once said,

Man’s greatest enemy is not disease but despair.

[My] approach to Consultation, Assessment, Research and Evaluation (CARE) is grounded in the firm knowledge that this cycle must be broken. There are no magic wands. Nothing can remove a disability and no solution is ever achieved without flexibility, effort and determination. [We must] provide an effective bridge between a person’s current level of ability and what he or she wants to achieve. It is a bridge whose central peers are potential, motivation and realism.

Mike Tawse, 1991 and 1994

Since many assessments are considered essential, and may even be required by law, improving their accuracy is a worthwhile goal. As well as the inaccurate use of tests, a breakdown in communication between professionals can lead to the wrong decisions being made, and inappropriate therapy or treatment plans being offered. Any one client may be treated, assessed or discussed by a number of professionals with different training, areas of expertise, vocabulary and approaches to assessment. The term “client” itself suggests one particular approach to care.

In the context of this series of books, it is crucial to keep in mind that assessment should be a positive experience, rather than, as so often seems the case, a self-validating one. One assesses in order to determine a course of action rather than for the simple pleasure of assessment for its own sake.

Time To Get The Edge… And Keep it!

Now that the focus of My Serrapeptase Adventure is moving towards detailed research and writing books, including The Disability Maze Books, I have decided to complete Anthony Robbins’ Get The Edge audio programme again. My intention is to give myself a renewed focus and determination to succeed.

The first time I completed Get The Edge was at the beginning of 2006, at about the same time as my adventure started. At that time, I needed to rebuild my confidence and strengthen my resolve, to take responsibility for my health and well being, after many years of illness. The result was My Serrapeptase Adventure, and the confidence to accept the opportunity and the challenge that I believe has saved my Life.

My goal, this time, thankfully, is less dramatic. In order to move towards sustained research and writing, I need to be more disciplined about the time I dedicate to writing and reading every day. My Serrapeptase Adventure has allowed me to write intermittently, until now. It continues to be a pleasure to share my adventure with you, by posting details of any new developments.

The research for my books and into the scientific basis of My Serrapeptase Adventure will require a level of sustained concentration that I have not needed, or attempted, for many years. It is a challenge to which I am very much looking forward. So, what does this have to do with Get The Edge? The programme helped me to set my focus and to learn to trust in my own innate determination, at one of the most challenging and exciting times in my life. My hope, now, is that re-familiarising myself with some of the simple, but extraordinarily powerful, tools devised and presented by Robbins, will provide me with a welcome confidence boost.

The sleeve notes ask:

What do you really need to maximize the quality of your life?

Get The Edge (2000) – Anthony Robbins

I have found the tools contained within Get The Edge, to be challenging but logical – A great combination. This is not the newest of Anthony Robbins’ products, but I still believe it is the best I have heard, so far. I am looking forward to all that I may discover this time.

Researching The Unexpected Eye Test

Today, as part of my research for The Disability Maze Books, I visited my optometrist. My intention was to discuss the technicalities of the test procedures, used by optometrists in the UK.

As I have said before, it is often difficult to convert the scores given by visual acuity tests, into useful information for daily life. It is, of course, possible to say that a series of acuity tests show deterioration or improvement, in statistical terms, but when one tries to apply this information to daily life, it becomes very difficult to find agreement, even amongst professionals, about the best way to do this.

My own experience suggests that the testing procedures, commonly used by psychologists in the fields of health, education and social-care, are prone to the same problem. It is this tendency for testing to produce results, which are opaque to all but the professionals, which I wanted to discuss with the optometrist, in the context of my books.

After some detailed and very useful discussion, which I will write about on The Health-Care Survivor’s Books site, our conversation turned to my own condition and I was offered an unexpected eye test. Regular readers will remember that my improving eyesight is one of the most remarkable hallmarks of My Serrapeptase Adventure.

The tests showed that my eyesight has remained stable, with the possibility of a very slight improvement in my near acuity, used for reading. The question arises because my score fluctuated between being the same as my previous test, and being slightly improved.

After further discussion, the optometrist suggested that although the mechanics of my sight were stable, it was clear that I was finding the reading test much easier, and that this might indicate an improvement in my visual perception. In other words, the ability of my brain to process the visual image, given by my eyes, rather than in the physical functioning of my eyes had improved.

As I have explained before, visual perception is not something that optometric testing is designed to measure, but for the first time, I am delighted that the optometrist suggested that the improvement in my visual perception is worthy of further research. To explain the clarity with which I now see the world and the joy I get from recognising its beauty, will require a greater understanding of both my eyesight and my visual perception.

In the coming months, I will be looking for more information and I hope to find a number of people who can advise me about undertaking some detailed research into this amazing phenomenon. As always, I will post details of all that I learn on this site, but I expect that it may take a considerable time and effort to make significant progress.

Today has been a fascinating day, in which a meeting to discuss one piece of research, has lead to something completely different. My hope is that the new research may begin to identify some of the medical background to my improving eyesight.

Writing Before I Could Read

Many readers have complimented me on my ability to write with ‘eloquence’, ‘humour’, and ‘clarity’, in the face of the daily challenge of overcoming my disability, which has delayed the completion of my books.

Thank you to everyone for your kindness. Whatever talent I may have for writing is, in many ways. the gift of many other people’s patience, as well as my own. It is a story which will be familiar to some, but surprising to others.

My love of words is one of my Mum and Dad’s few lasting gifts to me. They both encouraged me to write, but my Dad was the eloquent one, with almost perfect grammar, and spelling, which I have never had. Thankfully, he encouraged me to write, although my dyslexia, and terrible typing, must have been painful to him. Mum, who could not spell either, read to me whenever she could, mostly from American classics. My Canadian Foster Family, who are now precious friends, tell me that I showed a love of words much earlier in life.

For people who have only known me for a relatively short time, my enjoyment of books and my determination to write, have been slightly difficult to explain. It is true that my eyesight and visual perception only improved enough to make reading a pleasure, or even particularly useful, as the most remarkable ongoing part of My Serrapeptase Adventure, which began in 2006. Books and writing have been part of my life for many years and I was determined to write, despite doing so being physically difficult and often painful, before I learnt about voice recognition in the early 1990s.

Fortunately, I grew up with a family and friends who enjoyed reading, and many of whom were happy to read to me. Perhaps it would be fair to say that what I think of as an enjoyment of books could be more accurately described as enjoyment of the spoken word. As a child, I was fascinated by radio drama, without my eyesight being a problem.

As a very young child, I enjoyed the stories of Thomas The Tank Engine, and several years later, I met Rev W V Awdry, the author of the original stories. Although I was still too young, at that time, to have meaningful discussions about ‘being a writer’, I am sure that it was at about this time that I first formed the idea that writers were ordinary people who enjoyed sharing their stories, and that ordinary people, like myself, could be writers too.

Later, the stories of Laura Ingalls Wilder, known as The ‘Little House’ Books, were read to me. I think my parents thought that they would give me an idea of my American heritage. I am not sure that they taught me much about my own history, but the books are filled with simple, evocative descriptions, which provide a springboard for the imagination, which was sadly lacking from the television films.

When Laura Ingalls Wilder started writing her classic ‘Little House’ book series in 1932, she had no idea of creating fame for herself or the places where she had lived. She wrote simply to preserve tales of a lost era in American history, the pioneer period she vividly recalled from her growing-up years on the Midwestern frontier in the 1870′s and 1880′s. When Laura completed her eight-volume series in 1943, she had achieved a lasting and substantial literary picture of pioneer life as she had experienced it in Wisconsin, Kansas, Minnesota, and South Dakota.

www.lauraingallswilder.com

In the ten years from my early teens, I enjoyed writing poetry. Although none of my poems was formally published at the time, I was honoured to be invited to take part in a number of local, and national, poetry festivals, workshops, and recitals. At one of these workshops, I met one of the UK’s best-known performance poets, Benjamin Zephaniah, of whom it is said:

Young writers have said that the accessibility of his work has inspired them to take up writing, many record sleeves bear witness to the fact that he has inspired many of the new generation of rappers, and of all the performance poets that emerged in the late seventies/early eighties he is one of the few that is still going strong. He has thirteen honorary doctorates in recognition of his work and a wing in a west London hospital has been named after him.

Zephaniah believes that working with human rights groups, animal rights groups and other political organisations means that he will never lack subject matter. He now spends much of his time in China, but he continues working throughout Asia, South America and Africa, and is as passionate about politics and poetry now as he has ever been.

www.benjaminzephaniah.com

Although Benjamin’s style is, of course, very different from mine, I learnt a great deal from him and his encouragement, which is among the inspirations, to return to writing poetry in the future.

When studying for examinations at the end of my time at St Rose’s, I was honoured to meet one of England’s best-loved writers. The poet and novelist Laurie Lee, who was best known for his novel, Cider With Rosie, which was one of the books I was studying at the time. It was my privilege to meet Laurie on a number of occasions and to have the opportunity to talk with him about both the process of writing and about the places and the people, who inspired him.

Once he discovered that I was studying Cider With Rosie, and that reading was difficult for me, Laurie gave me the gift of an audio recording of him reading it. When I met him again sometime later I bought a copy of the book, which he autographed for me, including a comment that I had “heard it already”. Perhaps, like my more recent friends, Laurie also found it surprising that I wanted the printed book, despite both of us knowing, at that time, I could not have hoped to read it.

Like so many people who met him, I will always remember Laurie as an immensely gentle and kind man, with a great sense of humour and a tremendous appreciation of beauty. I was privileged to count Laurie and his wife as friends.

I was also blessed with wonderfully talented and creative English teachers at St Rose’s, and later at Wycliffe College, who introduced, and read, so much more of our amazingly rich and diverse language, via works as different as Harper Lee’s, To Kill A Mocking Bird, and Chaucer’s Canterbury Tales, with more modern classics from authors including John Steinbeck, and Melvin Barry Hines, best known for the novel A Kestrel For A Knave (1968), which he adapted for Ken Loach’s 1969 film Kes — quite a challenge to read aloud to a bunch off teenagers, but deftly overcome by a wonderful teacher, who is a great friend today.

Set in this background, my own modest skills are, perhaps, a little less surprising than they may first appear. Writing is something I enjoy, and reading has become easier with time, and escaping the medications, which impacted my eyesight for decades. I truly enjoy learning, and sharing my story with anyone who may be able to benefit from my experiences, but also because reading and writing, enables me to remain in contact with wonderful people around the world.

Thank you again for your encouragement to me, but above all, enjoy your language, treasure it. It is the best way to tell the world who you are, and to tell those whom you love who they are. You can break its rules, but you cannot break your language, except by not using it.