by Kate Crohan
(Author’s Note: Hannah and I worked together for a number of years at the Carroll Center for the Blind and have been friends since then, albeit more recently from a distance. Hannah taught home and personal management skills, and I taught communications skills. I felt that Hannah was a kindred spirit from day one, and we had many discussions during lunch and beyond. I was intrigued when she began writing her blog, with the understanding that it would eventually evolve into a book about vision loss and social skills. I was thrilled when she found a publisher and her book came to fruition last July. When I finally read it, I was in awe and we discussed a few ideas about marketing the book. How could I say “no” when Hannah asked me if I would write a book review for “The ACB Braille Forum?”)
Writing this review has been a daunting task. There is so much material packed into a short book that I couldn’t possibly do it justice by attempting to synthesize the information. I will focus on the organization, who should read it (spoiler alert - everyone), the language, and the humanity brought forth in this book.
The book is ingeniously organized. It is not a memoir, even though Hannah’s gift for writing and her life experience would certainly qualify her to write a good one. Its genius is that it is not a “tell all”/advice book but still is replete with Hannah’s layered experiences with her own vision loss, along with those of many others, as evidenced in the acknowledgements. The book is filled with countless hints for adjusting to initial vision loss and ultimately describes developing the skills needed to live a full life, however that might ultimately be interpreted. It is a book that acknowledges the grief and disintegration of self when facing vision loss, suggesting ways of coping at every stage in order to not just move from one day to the next but envision a future and live a full life.
The book is divided into five parts, and the reader can certainly learn much about the details just by scanning the table of contents. To gain an idea about the scope of the book, note that Part One is called “Believing the Unbelievable: Facing Trauma at the Hospital and Back Home,” and Part Five: “A Satisfying Life.” The question is: How do you navigate from one part to the other?
The book is layered in its approach to both developing skills and recovering a sense of self, and it is not a linear description. Hannah mentions many times that vision loss is different for each person. As Hannah described: “When I lost the sight in my good eye overnight, I went to work the next morning. I was a chef in London and, with help from extra staff, prepared a grand dinner to honor the Archbishop of Westminster. This didn’t seem crazy at the time because I couldn’t believe anything serious had happened.” Contrast that with: “For three months I just lay in bed and wept. Then one day I got up and started to take care of myself again,” remembers a Carroll Center volunteer, age 90. Because of the range of reactions to vision loss, the different age groups who are affected, and the different ways of adjustment, each chapter presents ways of coping, ultimately leading to a sense of self that encompasses the vision loss rather than denying or being paralyzed by it. At every turn, Hannah presents ways of coping that evolve as does the adjustment, one bolstering the other.
To begin, Chapter 1: The Shock and the Docs: Trauma and Disbelief. In this chapter, Hannah addresses some of the causes of vision loss, but, more to the point, immediately discusses ways of approaching the actual doctor’s appointment — writing down a few words to jog your memory; recording the visit; explaining terminology, etc. and ultimately coming to terms with the diagnosis. In the end, the message is: “It’s your voice that needs to be heard.” Chapter 2 also addresses the issue of your job and how to approach it – practical suggestions but not advice about how you should do the same job or plan for a possible career change at that point. Chapter 3 — which is the beginning of Part Two: A New Life: Going Though Grief, Preparing for Change — deals with the grief and “identity dislocation,” and the acknowledgement of the very personal experience with a plan to move forward. I encourage you to read the table of contents just to gain an overview. Part Four is Going Solo and Part Five is A Satisfying Life. You get the picture: From grief over loss, to more independence to a full life with strategies to cope at every stage.
As part of this multi-layered approach to vision loss and the strategies needed, every chapter has references to other chapters that pertain to a specific theme. This approach allows the reader to cross reference. There is also a detailed reference and resource section at the end, and each chapter always indicates the applicable notes. This allows the reader or family member to read the book as a whole or as a reference. Since resources are ever-changing, particularly with regard to technology, Hannah’s web site, www.visionlossandpersonalrecovery.com, will offer information beyond those in the notes at the end of the book.
In a book club that I belong to that is made up of mostly librarians, the question is always asked: “Who should read this book?” As I mentioned earlier, the answer is “everyone.” I have always been blind, so I never thought about what it might be like to actually lose vision. My life was so enriched by my experiences teaching at the Carroll Center because it changed my perception about vision loss and how it changed lives. A person who is adjusting to vision loss or blindness has a very different perspective about the loss of sight, and I would never have learned as much about that perspective if I hadn’t worked at the Carroll Center. Anyone who has always been blind or visually impaired will be enriched by reading this book, both from the anecdotes and the advice. Since I have been on the planet awhile, this book contains so much about what I have already learned through life experience, but if I were a recent high school or college graduate, beginning my first job or perhaps after leaving a rehab center, I would find a wealth of information and might be able to avoid making mistakes.
The book shows great sensitivity when discussing family life, from the point of view of the person experiencing vision loss within the family to the family members and how they can maintain their equilibrium. That delicate balance between autonomy and need, and the experience of the family member who might be giving too much is constantly explored; family members of those who are blind or losing vision should definitely read this book. The reader who wants to simply read a book to gain knowledge of vision loss will not be disappointed. Anyone who has experienced grief or depression will learn a good deal about coping with grief by reading Chapter 4 and the other chapters that discuss the constant need to readjust to grief in a world where there is “no script for grief.” Read this book and recommend it to your family and friends. I would also urge you to find ways to get it to your local libraries, senior centers or other advocacy groups.
With regard to availability and readability, the book was published by a small publisher but is now available in print from Amazon; the eBook is available from the Google Play Store. It was recorded at the Perkins Braille and Talking Book Studio by narrator Judy Ewell, whom Hannah chose. I can hear Hannah’s voice through the reader. She reads with a direct, confident and compassionate voice. Since the book is organized by parts, chapters and sections, it is very easy to navigate using an audio player. The book is also available from Bookshare, and the heading structure makes it very navigable using Microsoft Word.
This book is a balance of warmth, humor, factual information ranging from the types of vision loss to what is needed to cope, and the multiplicity of experiences and emotions when you literally “can’t believe your eyes.” Hannah shows how you can move from that stage of disintegration to the final stage: “Here you are again. Welcome!”