Off North Road
Gift within a gift
A couple of weeks ago I received a small gift by mail from one of our old friends. Nicky was Mary Ann's college roommate and we have kept in touch with her for 50 or more years. We have sometimes compared books we have read and her gift was, in fact, Henry Grunwald's book, "Twilight - Losing Sight Gaining Insight," published by Alfred A. Knopf in 2000. The heart of the book provided even a more touching gift. As the publisher's comment in the fly-leaf says: "Grunwald gives us an autobiography of the eye - his visual awakening as a child and young man and again as an older man who, facing the loss of sight, feels a growing wonder at the most ordinary acts of seeing. This is a story not merely about seeing but about living, not merely about losing sight but about gaining insight. It is a remarkable meditation."
Last week I stopped at the cash-out desk of a busy store in Vineyard Haven and fell into conversation with one of the employees having a short break. We have known each other for many years and exchanged pleasantries about our respective health. We both have had a series of relatively serious conditions as we have grown older together.
"I'm coming up on the other side of a bad spell," I admitted.
Her response was, "What a surprise we have lived so long; I can't believe it and I'm feeling well." She looked well with a broad smile, which she almost always wears with an air of cautious optimism for the future.
As I progressed through Grunwald's book, I found wave after wave of pure and simple prose and I was provoked into an inner silent monologue. Indeed, simply living in this tumultuous time is not at all easy or effortless. The war with daily pronouncements of deaths and grievous casualties among Americans, Iraqis, Afghanis and others bring grief and despair at home for many. The rancid political atmosphere in the nation, rising violence in our schools and the streets of our cities, not to mention the rural parking lots of fast food restaurants and bars are enough to promote a national overload of depressing negativism with calls for surrender and other calls for more aggressive killing on all sides of the conflict. That we have lived long lives does not protect us from this atmosphere, but hardly should we gain in age and forget the delight which Grunwald finds in the light that glimmers even in fading and the everyday sights which make up our lives. When something like vision is threatened he tells us to look about and take in those sights all the more which continue to be seen; appreciate them while still visible, implying, I believe, strengthening the memories of all these blessings should the fading of light continue to darken.
What shall I do to manage under the devilish condition that I now must share with the former editor in chief of "Time, Inc." publications and Vineyard visitor? A certain arrogance operates in the atmosphere of obsessive self-concern with one's own illness, particularly bemoaning the poor hand which fate has dealt us. Grunwald's conversation is totally lacking in this trait. It is "remarkable," a lesson for all of us. His experience is not only poignant to hear about but also laced with courage and inspiration. He read and had read to him endless materials about the disease of aging macular degeneration (AMD), the most common form of blindness in the U.S. He sought out professionals and friends and eye specialists who offered diverse methods of help and inspiration for living as full a life as possible with the loss of vision and the prospect of an uncertain future. Until the past two years there had been no effective treatment for AMD and treatments in use before this were at risk for causing increased visual loss.
I experienced early in my eye problem the "dry" form of AMD. It is the most common form of the disease. The cells in the retinal macula, the central visual spot in the back of the eye, die of unknown cause. This spot contains specialized cells that define small details like letters, words and, commonly, central facial features which are transmitted to the visual cortex of the brain. This form is very slowly progressive and disability can be minor although over years can become disabling. As I drive along State Road toward Chilmark the horizon over the ocean has become wavy losing its straight-as-a-dye line. I continue driving except after dark; reading can be irritating but do-able with help from a magnifying glass.
However, about a year ago my visual acuity decreased quickly over two months between visits to the eye doctor. Hemorrhages and leaking vessels appeared over the macula with small cysts and thickening of the retinal tissues. My eye doctor, Sheldon Buzney of Retina Specialists of Boston, gave me hope that what was now the "wet" form of AMD could be treated to halt progression of this more serious form of the disease. A new medication injected directly into the affected eye usually can halt the more serious rapid progression of the "wet" form of ADM. I was terrified at the thought. Piercing the eye is one of those mythological happenings in torture and ancient warfare which makes us all grimace with revulsion at the thought.
My salvation came from a 96-year-old friend who had become legally blind from AMD. She told me about the new drug and how it had stopped her decline although had not restored her lost vision. She was very thankful at that. "Oh, the procedure is a breeze," she said. "Hardly a pinch, I felt as if I'd had soap suds in my eye or a speck of dust under the lid for a day or two."
Of course, I barely believed her but her remark made Dr. Buzney's reassurance more credible and it turned out to be absolutely true. After three painless monthly injections of the drug called Lucentis, the "wet" AMD had "dried up" and the vision was marginally improved and has remained stable for another three months. I am hopeful but wary. Lucentis is a new anti-neoangiogenesis drug. The word breaks down into anti (against), neo (new), angio (blood vessel) genesis (growth).
Grunwald's book and this ten syllable-drug came at a propitious time in my life. I have more to hold on to than my own self-absorption. I live each day as I can, visit the eye doctor regularly and keep several magnifying glasses about the house for the phone book, magazine articles, and medicine labels. I continue to be amazed at the depth of knowledge scientists have acquired about the eye. I'm lucky to be alive and well, approaching 80.