How to Survive Losing Vision: Managing and Overcoming Progressive Blindness Because of Retinal Disease

By Helen J. Harris

This is the story of one womans courageous struggle against the relentless encroachment of darkness. Helen Harris, after a childhood marked by unplanned clumsiness, skinned knees, and being known as the class klutz, discovered she was a victim of retinitis pigmentosa (RP), a disease causing progressive blindness and having no known cure. Devastated by this prognosis of ever-growing darkness, this brave and stoic young girl determined nonetheless to make the most of her future.

She was galvanized to furious activity, driven by anger at the abysmal absence of knowledge of RP in the medical community and, in fact, this world. But what could one woman do? Plenty. For someone with no experience in business, public relations, volunteerism, or recruitment, Helen Harris undertook to master them all. One lone woman with the mission to move the mountains of ignorance about a disease even Helen had never heard about, all the while trying to cope with the ever-growing darkness surrounding her and her sons. She came to know that RP was one of a family of related genetic diseases, one more terrifying than the other. These diseases, being of genetic origin, often strike multiple siblings in a family.

This book will lead you through Helens amazing success in recruiting celebrities to their cause and shedding light into the darkness of RP, involving the medical world in the fight, and garnering support from the political world up to and including a president of the United States. Information on all the new technology that has been developed since Helens journey began are enclosed within the pages of the book.

• Language: English
• Publisher: AuthorHouse
• Release date: Apr 21, 2011
• ISBN: 9781456748005

Helen J. Harris

Helen Harris has been a tireless advocate for the blind and vision impaired for the past 40 years as founder of Retinitis Pigmentosa International (RPI), The Vision Awards, and TheatreVision described movies for the blind. Helen has testified before Congress about major issues facing the blind and enlisted the aid of President George H. W. Bush, whom she met at the White House in 1990. She has received the support of major Hollywood directors, producers, and stars including Charlton Heston, Bob Hope, Jon Voight, Sherry Lansing and many others. She commissioned the first medical book written exclusively about retinitis pigmentosa (RP) and has also been responsible for contributions approximating $325 million for research and treatment for RP and other degenerative eye diseases. Herself a victim of RP, and legally blind for more than 30 years, Helen personally knows all too well the helpless and hopeless feeling of having a disease that is little known, but extremely debilitating. While learning to use the white cane, she sought to prove to the world that despite vision problems, she wasnt blind to life. She took up painting, and with only two art lessons, the young homemaker astounded family, friends and her instructor by showing tremendous innate talent. Encouraged, she plunged into painting with a passion. Art was tremendous therapy for me in dealing with RP, Helen notes. It was a real boost for my self-esteem. As long as I could do something that only a sighted person could do, I didnt feel quite as handicapped. The harder it became for me to see, the more creative I would get in finding ways around it. Helen is also an avid writer, poet and currently working on three other books, including her memoirs.

Book preview

CHAPTER 1

This Is the Book I Needed

I have known Helen Harris for over thirty years, and from the very beginning, she has shown such dignity, passion, such bravery, courage, and such a positive attitude. She’s a real hero.

Spoken by Sherry Lansing

Former President, Paramount Pictures

at the 2010 Vision Awards

With this book, I hope to give the gifts of hope and freedom gained from my own long journey, to the millions of people who have lost eyesight because of retinal degenerative diseases, and to those who love and care for them.

This is the book I wish I had forty years ago as I progressively lost my vision. It took a long time, back then, for doctors to even diagnose why my field of vision was shrinking. Even then, they could not give me a reliable prognosis other than telling me that my loss of eyesight would be irreversible.

I suffer from retinitis pigmentosa (RP). RP really is a group of genetic eye disorders. Rarely diagnosed properly at the onset, RP can start in childhood—as it did with me—with night blindness, then, later, loss of peripheral eyesight, and finally blindness itself. This loss can take years or even decades. Many people may not become legally blind until they reach their forties, but others lose their sight dramatically faster. Progression can differ widely from one individual to another.

Even as my field of vision narrowed, I could still read eye charts in front of me and those through an optometrist’s viewer. During the same time I became legally blind, I still registered as having 20/20 vision!

RP is one of several types of degenerative retinal disorders that afflict tens of millions of Americans, with new cases diagnosed every day. These types include macular degeneration and diabetic retinopathy.

When I was diagnosed, there were virtually no resources and very little information available to help me learn about my illness or what to do about it. Times have changed. I’m proud to say that the foundation I established, Retinitis Pigmentosa International, played a role with other fine organizations in raising public awareness about retinal degenerative conditions.

Medical science has made strides in understanding and diagnosing these incurable vision-impairing and blinding degenerative retinal disorders affecting tens of millions every day. The search continues to find safe and effective treatments; however, no one can predict accurately when such treatments might be discovered to slow, halt, or reverse vision loss among those afflicted. But cellular and bionic implant research has shown much promise recently.

Nevertheless, we still have a long way to go. We also still lack public information. This is particularly true when it comes to helping those with vision disorders to cope with the very real and daily emotional, social, and physical challenges of living with low vision and loss of eyesight.

Over the years I have shared my experiences and offered information and support to hundreds of fellow sufferers from retinal diseases, as well as provided support for their health care providers, caregivers, and loved ones who have asked my advice by phone, email, or in person. With this book I hope to reach all of them and many, many more.

Most of all, I want to get people to think differently about these diseases. I want people not to think of these diseases solely as tragedies, but as conditions that people can learn to manage and compensate for, and even overcome. In these pages, I will show how sufferers of retinal degenerative diseases can take positive steps to cope successfully with vision impairment and regain control of their lives.

One Blade of Grass

Miles and miles of splendid grass

Go I riding sight unseen

Massive mountains clouds on high

I just ride and wonder.

Grass for miles I’m told there is

And I hear it sing a bit

One blade of grass is all I want

To see it once and hold it.

One blade of grass lost in the rest,

You might not want all the mess.

But for me I know its meaning

And wish to see it sunlit streaming.

One blade of grass

A simple thing

I can’t wait to see

This one blade sing.

Helen Harris

2008

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Majestic Thoughts

Chapter 2

From Clumsy girl, to Homemaker, to Artist, to Advocate

When I first got the phone call from Helen Harris for the Vision Awards, I didn’t know anything about the organization (RPI); but within speaking with her about twenty minutes, I found myself completely, very emotional… so moved by the stories that she told me, what she explained about the work she had been doing.

Spoken by actor and filmmaker

Todd Field at the 2007 Vision Awards

First let me tell you a little bit about my life and my experiences going blind, and what has become my mission in the years that have followed.

Imagine the horror of being a talented artist, someone whose greatest joy is to pick up paint brushes and express emotions on canvas, only to have that gift slowly and insidiously extinguished by darkness—a blindness that begins almost imperceptibly in the early years of life, which gradually closes your peripheral vision, making your world smaller and darker with each passing year until only a tiny pinhole of light remains.

This is what it means to have retinitis pigmentosa (RP). More than thirty million Americans suffer from some sort of blinding retinal disorder. This number has climbed in recent years, which is due to better diagnostic techniques.

That’s one in ten Americans! The problem is worse worldwide, especially when including people in developing countries who are afflicted by deteriorative eye diseases caused by parasites, pollution, poor sanitary conditions, and lack of medical resources. These tragedies are often preventable or can be ameliorated, sometimes at little cost, with better care and public health improvements.

Lack of awareness and knowledge about these diseases constitutes the biggest barrier to proper care and treatment both here and abroad. That’s why one of my primary missions through RP International has been to educate as many people as will listen about the nature of these disorders and how to best counter and cope with them.

I found little information or help out there when I was diagnosed with RP nearly forty years ago. At that time I was a homemaker in Pennsylvania, expecting to carry on a fairly normal life as a corporate wife and mother.

I was born Helen O’Malley in Philadelphia in 1936, the fifth of six children of Irish immigrants. Looking back on it now, I showed the first symptoms of RP—night blindness and loss of peripheral vision—when I was only eight years old. But nothing was done to diagnose my problem medically. At the time, family, teachers, friends, and even our doctors thought my resultant stumbling and fumbling were simply signs of clumsiness.

Of course I believed them. This misguided label damaged my self-confidence. I changed from a vivacious little girl into a teenage wallflower. By the time I was in high school, I couldn’t see well enough to dance in the darkened auditoriums at the proms. However, my peripheral vision loss wasn’t diagnosed because, typical of many RP sufferers, I still could read the eye charts at the doctor’s office and tested as having 20/20 vision. (This is why, today, I strongly urge peripheral vision testing for all children.)

In 1958, I met and married Bob Harris, an aspiring engineer. It was only then, as a young woman, that I discovered the real cause of my so-called clumsiness. A cousin of mine was about to be operated on for what had been diagnosed as a brain tumor. The physicians changed their diagnosis when I happened to remark to them that for many years I had experienced the very same symptoms that they had observed in my relative: frequent falling, bumping into things, and night blindness.

Unfortunately, I’ve found that my experience is by no means unique to those of us with retinal disorders. A misdiagnosis like the one my cousin received is possible because the vast majority of us lose vision gradually. RP sufferers in particular often retain 20/20 vision despite their slowly shrinking central cones of vision. This makes it easy to stay in denial and put off taking actions necessary to cope and, indeed, live a higher quality of life even as our vision diminishes into eventual blindness.

Until cures are found and implemented, there’s little an RP sufferer can do to keep from going blind. Fortunately, however, we can still do a lot about the overall quality of our life. We can free ourselves from the physical, psychological, emotional, and social limitations of low vision and blindness by taking control of our lives once more.

If you are one of

Reviews for How to Survive Losing Vision

[aprilbrown_1 · Rating: 4 out of 5 stars]

What ages would I recommend it too? – Twelve and up.

Length? – A day's read.

Characters? – No.

Setting? – History of Low Vision through 2011.

Written approximately? – 2011.

Does the story leave questions in the readers mind? – Ready to read more and find out more answers.

Any issues the author (or a more recent publisher) should cover? Resources for those with vision loss, especially how to talk to doctors who don't understand or believe.

Short storyline: A useful historical discussion of low vision services and products as well as how the lack of tools, education, and knowledge led to problems for the author throughout her childhood and early adulthood.

Notes for the reader: Story interspersed with poetry and pictures painted by the author before her vision was totally gone.