Hope for a VIP

By Vivian McDermott

At age fifty-six, Diana was diagnosed with a degenerative eye disease called retinitis pigmentosa. The doctor said there was no cure. Her own research on the internet confirmed that there was no cure. So she tried to adjust to the idea of continuing to lose her eyesight with a good attitude. Really she

• Language: English
• Publisher: WorkBook Press
• Release date: Nov 11, 2022
• ISBN: 9781952754630

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Copyright @2021 by Vivian McDermott

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This publication contains the opinions and ideas of its author. It is intended to provide helpful and informative material on the subjects addressed in the publication. The author and publisher specifically disclaim all responsibility for any liability, loss or risk, personal or otherwise, which is incurred as a consequence, directly or indirectly, of the use and application of any of the contents of this book.

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ISBN-13: 978-1-956876-30-7 (Paperback Version)

978-1-956876-31-4 (Digital Version)

REV. DATE: 10/11/2021

AUTHOR’S NOTE

•••

For most of my life, I didn’t know that I was visually impaired. Oh, I knew I had imperfect vision – I wore glasses after all. I also knew that my prescription lenses didn’t help me see the things other people seemed to see. Unfortunately I didn’t know what to do about it.

Then at fifty-six years of age, I was diagnosed with a relatively rare degenerative eye disease called Retinitis Pigmentosa, or RP. I had never heard of it, nor had most of the people to whom I mentioned it – probably because it was relatively rare. As I reviewed my life through the prism of this new information, I realized I had started having symptoms of RP in my teens.

The ophthalmologist who diagnosed the problem said that there was no cure and nothing could be done, so I spent my time and energy trying to function as normally as possible while I contemplated going blind. It was a bit of an emotional rollercoaster.

When I wrote Adventures of a VIP I did it to explain what RP was and the impact it had on my life. It was a type of personal therapy, if you will. I never intended to write a sequel.

Then one day I learned about acupuncture as a treatment for RP, and I decided to write Hope for a VIP to tell the rest of the story. What I’ve written concerning the acupuncture treatments and my response to them is true. Everything else, while loosely based on my own very real journey of hope for improved vision – is fictionalized.

Dr. Andy Rosenfarb and Dr. Marc Grossman are real people. If you have vision issues I urge you to check into the treatments they offer.

Contents

LET IT BE? 9

COPING AND HOPING 18

A LEAP OF FAITH 27

HELLO HOPE! 38

TESTING, TESTING 49

RE-ENTRY 58

ROUND TWO 65

PERSPECTIVES, OLD AND NEW 74

RABBIT TRAILS 83

THAT’S LIFE 91

ROUND THREE 98

REALITY CHECK 109

UPS AND DOWNS 118

DOWN TO THE WIRE 124

GOD LAUGHS? 129

SURPRISE! 140

DOGGONE IT! 148

ONCE MORE WITH COMPANY 155

THE BUY BUTTON 165

UNDER THE LASER 174

ROUTINE MAINTENANCE 182

CHOICES 198

FIFTY YEARS 206

CHAPTER ONE

LET IT BE?

•••

Let it be…let it be…let it be…let it be… The chorus from the Beatles song was playing through Diana’s mind over and over and over in a relentless never-ending loop. She hadn’t heard the song in ages so she wasn’t quite sure why she couldn’t get the refrain out of her head. It was as if her brain had become infected with a music virus.

Let it be…let it be…let it be…let it be. Diana had never been a rabid Beatles fan like so many of her friends, but she enjoyed most of their music. Usually. Today, not so much.

Let it be…let it be…let it be…let it be… Where it came from, she didn’t know, but she remembered a little bit of trivia about this particular song. Possibly she had been thumbing through a women’s magazine in a waiting room somewhere. Paul McCartney said in an interview that he had been thinking of his mother, Mary, while he wrote the song. His mother died when he was young, and he sometimes had a mental picture of her coming to him like an angel, encouraging him to relax and stop worrying about his troubles.

Quite possibly that information had stuck in her mind because she had also been young when her mother died and could relate to that comforting mental picture. Today, though, the sentiment and the song were getting on her last nerve.

The trouble was that she had just never been very good at letting things be. As child she had picked at scabs, pulled on loose threads, taken dares, and asked quite a lot of questions. Whenever she faced a problem or a challenge, she was inclined to try one thing after another until something worked. She was not inclined to sit back and let things be. Letting things be felt like giving up, and giving up was simply not her style.

Stubborn was more her style. She decided fairly early in life that stubbornness was a good personality trait to have. Stubbornness had helped her learn to play the piano, learn to do a backbend and memorize the multiplication tables. Being stubborn helped her get through the grief after her mom died.

Later in life, stubbornness helped her to keep her sanity while she dealt with PMS. Every woman she knew had to deal with PMS, of course, but for some reason Diana ended up with a mutant variety of the monthly malady with symptoms that other women didn’t seem to have. Her friends and family didn’t understand, and the doctors she consulted over the span of a dozen years, could not help her either. Eventually, she gave up looking to traditional medicine for answers, and began looking for answers elsewhere. Elsewhere turned out to be an interesting place, where she picked up all kinds of information, some of it helpful, and some – not.

Do you drink much alcohol? The counselor had asked during one of her first telephone counseling sessions with a PMS clinic located somewhere on the East Coast.

Not really, Diana replied. I might have one drink, but I don’t like feeling out of control, so I rarely have more than that.

You are lucky. The counselor replied. Some women fall into the trap of using alcohol as an escape, and that’s a very slippery slope. There is a temptation to overuse alcohol since it often feels so much better than reality.

One of the doctors Diana consulted prescribed anti-depressants. When she tried them, because she was desperate and he was the expert, She discovered that being medicated left her feeling out of it, which was not an improvement over her PMS symptoms. She stopped using anti-depressants and kept looking.

The good news was that she had avoided becoming addicted to alcohol or drugs, and the bad news was that her struggle with PMS lasted for many years. She had no idea if it was some combination of the supplements, diet, exercise, and counseling that helped, or if the symptoms abated when she aged into menopause. One thing she knew, though, was that she had not thrown up her hands and just let it be.

Now her attention was focused on the problem of her failing eyesight. She believed her symptoms began sometime in her mid to late teens when she began running into and tripping over things, and noticed that she was unable to see what those around her saw. She fell off her bike. She had minor accidents with the car. She had trouble finding a seat in a darkened theatre. She didn’t immediately recognize friends if they changed their hairstyle. Sometimes she couldn’t tell the difference between black and navy, or black and dark brown.

Since her eye exams were normal, she wondered if she had a neurological problem of some kind, like maybe a brain tumor.

Throughout the years, with several different eye doctors, she brought up her vision issues but nobody had an answer. Even though it seemed hopeless, she kept asking questions and looking for answers. She didn’t have much hope when she mentioned her vision issues to Dr. George. When he referred her to an ophthalmologist, she was skeptical about wasting more time and money on yet another eye exam. She agreed to go because somewhere in a back corner of her mind she hoped for an answer, and she trusted Dr. George.

It was her opinion that Dr. George had one foot in traditional medicine and one foot in alternative medicine. He was in his seventies when Diana met him; not disillusioned with the medical profession, exactly, but convinced that there were other viable therapies outside of traditional medicine that also had merit. Diana vehemently agreed with him.

Dr. George became a nutritional response therapist after practicing traditional medicine for most of his professional life. He maintained a variety of contacts from fifty years in the medical field. Diana had been consulting him for about a year when he referred her to Dr. Letz, the very best ophthalmologist in his network of medical colleagues.

After a more extensive eye exam than she’d ever had before, Dr. Letz diagnosed her with a degenerative eye disease called Retinitis Pigmentosa (RP).

Of course she was grateful to finally have an explanation for why she couldn’t see in the dark and had been running into or tripping over things for the past forty years. It was a huge relief to receive confirmation that she wasn’t stupid and didn’t have a brain tumor or a neurological issue of some kind.

Unfortunately, according to Dr. Letz and all the research she could find on the subject, not only was there no cure, there was also no treatment; her only option was to sit back and let it be while her vision continued to deteriorate. She thought it was ironic that the answer to the lengthy quest that had begun to seem hopeless was that her condition was – pretty much hopeless.

Diana knew plenty of people who managed to cope with degenerative diseases. One of her grandfathers suffered from heart disease. It curtailed his activities, of course, but he went on with his life as best he could until he died. Her other grandfather survived a serious stroke in his mid-eighties and spent the remaining ten years of his life stubbornly working to recover his manual dexterity and his speech. Her younger sister had faced ALS (Lou Gehrig’s disease) with amazing courage and a calm acceptance that Diana would never forget.

We’re all going to die sometime. I just know more about when and how. Marcy said philosophically. Then she went about living the rest of her life, enjoying her family and puttering with her flowers.

Diana knew people who were dealing with a variety of debilitating diseases including diabetes, arthritis, fibromyalgia, COPD and cancer. Some of them were able to just let it be, but others relentlessly pursued every treatment they could find. Either way, most of them were positive and cheerful.

Somehow, she just couldn’t resist picking at her vision problem, so she started doing a little research. In the process she had learned all kinds of trivia about eyes and eye health. For example, the term Retinitis Pigmentosa was first used two centuries ago by a Dutch ophthalmologist named Franciscus Cornelius Donders (1818-1889). The tern was somewhat misleading since RP was not simply an inflammation of the retina, as the term retinitis suggested. Instead, it was a relentless progressive degeneration of the retina.

At the time of her diagnosis, Dr. Letz explained that RP was an eye disease in which there was damage to the retina, which is the layer of tissue at the back of the inner eye where light images are converted to nerve signals and sent to the brain. He was not surprised that Diana had never heard of it because it was a relatively rare condition which affects approximately one in about four thousand people. He said it was common for most people who suffered from RP to start having symptoms in their late teens or early twenties. Diana thought back to her teens and decided that was accurate. Then he said that many were legally blind by their mid-thirties. That observation got her attention, because Diana was twenty years past her thirties.

Finally, Dr. Letz admitted that in all his years of practice – and he was nearing retirement – he had never seen anyone with symptoms as mild as the ones she had. His educated guess was that she would not go completely blind, even though her vision would continue to deteriorate, as is the nature of a degenerative disease.

Diana was somewhat disconcerted by a doctor who made an educated guess, but at the same time, she appreciated his honesty. In her opinion, nobody on this earth had all the answers. Through her own research, she learned that roughly half of all RP cases were hereditary, so other family members were also affected. However, no one in three generations of Diana’s ancestors had been blind, and none of her extended family, including her children, had any of the symptoms. Pondering those facts, Diana assumed herself to be among the other half of the group where no hereditary link could be found. Privately, she thought of it as Random RP. Were there other people out there somewhere with symptoms like hers? She didn’t know.

Using the only kind of arithmetic she felt comfortable with – very basic math - Diana decided that having Random RP put her in a group half the size of the one Dr. Letz told her about, or one in about two thousand. The group became much smaller when she factored in symptoms so mild that they had gone undetected in forty years worth of regular eye examinations.

Somehow she doubted that extensive research was being done to help such a small segment of the population, so she had been trying to look on the bright side and adjust to her limitations with a positive attitude. Let it be…let it be…let it be…let it be…

As her night vision worsened, Diana stopped driving after dark. Before too much more time had passed she stopped driving at dusk, on cloudy days, in unfamiliar surroundings, or if it was raining. Then she hit a pedestrian. He was not seriously injured, but the incident added major stress to her eye issues every time she got behind the wheel of her car. Finally it got to be too much and she stopped driving altogether. There went her independence. Being unable to see in dim light also affected her ability to navigate indoors, which made going shopping, eating out, visiting in other people’s homes or attending gatherings of any kind, more than a bit of a challenge. There went her social life.

Vision issues also affected her hobbies. Reading music was the equivalent of deciphering fine print, so learning to play new songs on the piano became tedious instead of enjoyable. She made the effort only if she really liked a song, because the process could take weeks – or months. Mostly she played the old songs she had memorized.

It took bright light, a magnifying glass and patience to thread a needle, whether it was on the sewing machine or to use for hand sewing. Unfortunately, Diana didn’t have an abundance of patience, so she substituted stubbornness and swearing, and so far that had worked when she absolutely needed to mend something, but she didn’t sew for fun anymore.

Gardening morphed into time spent tripping over or searching for misplaced gloves, rakes, clippers and other tools. Even though everything took three times as long as it should have, Diana still planted a garden, tended her flowerbeds and mowed the lawn. Mostly she just refused to give up the hours she spent outdoors. In her opinion, if stubbornness was a good trait then denial also had its uses.

At her quarterly eye exams, the ophthalmologist always said that her straight ahead vision was still pretty good. It was one of those upbeat, positive things health professionals said when they didn’t want to tell the whole truth. Or at least that’s the way Diana interpreted it. Because the truth of the matter was that the vision in her right eye was terrible. Even after cataract surgery and while wearing her glasses, her distance vision was blurry, and the near vision in that eye was worse. Regardless of how large the print, she could not decipher printed words with her right eye - at all. Where letters should have been, she saw faint fragments of straight and curved lines, as if she were looking at a newspaper through a rain spattered windshield. Let it be…let it be…let it be…let it be…

Thankfully, she could still read with her left eye, although she had given up real books and switched to a tablet so she could adjust the text size. Sometimes she missed holding a real book, but you do what you have to do. She considered it a blessing that she was still able to use a computer to keep in touch with friends and relatives via e-mail.

She had even tried her hand at writing a book and discovered she could do that too. It started at a high school friend’s suggestion one winter. The two of them lived in different parts of the country, so they took turns writing and passed their manuscript back and forth via e-mail. It took them over a year to write a joint memoir. They still hadn’t gotten around to publishing it, but the writing process was so much fun that they decided to try their hand at fiction. The result was a story about two sixty-something women sending care packages and dating advice to a college girl. They used a self-publishing service to turn their efforts into an actual book, and it got rave reviews among their friends and family.

The fact that at least a small group of people enjoyed reading what they had written was enough to encourage Diana to try writing a book of her own. Creating a family oriented saga kept her busy and entertained for several months, and once again a handful of people enjoyed her efforts.

At about the same time Diana realized that her books might sell better if she was more into marketing, she also decided that promoting her books would probably require things she could not do alone, like traveling to events. She decided to just focus on writing. In her opinion, the cost of self-publishing a book once a year or so was a reasonable amount to spend on a hobby. She would certainly spend about the same amount if she had a golf membership in the summer and a ski pass in the winter, as an example.

When she finished her first solo novel, she decided that her next endeavor would be to write a book based on her vision issues. It was a way to explain RP, because almost nobody in her circle of friends and family had ever heard of it. If people knew about degenerative eye disease, it was usually a general knowledge of macular degeneration or glaucoma rather than RP. That didn’t