Lessons from “Twilight”, a memoir by Henry Grunwald

Looking for vampires??? None here.

This eloquent memoir precedes our current computing pre-occupations, making a case for the advances we consider in our previous posting ‘Aren’t we Vision Losers lucky?’. The book includes the author’s description of his diagnosis, treatments, and emotional responses along the way. Chapter 2 has a fascinating section on blindness as seen in mythology and literature, identifying our patron Saint Lucy.  This book is especially cathartic for a vision loser asking ‘do I feel or act like that?’ or ‘wow, he expresses my sensations so well. And that makes me feel better to share that feeling.’

Grunwald developed full blown wet macular degeneration  after his retirement from Editor-in-chief of Time Magazine and a distinguished career including ambassador to Austria. He wrote his memoir of his vision losing experience in the late 1990s following a well-received article published in the New Yorker in 1996. His short eloquent book is available on Bookshare.org, scanned by this blogger.

In Chapter 10, Grunwald sums up the life-changing effects of gradually losing his eyesight. Hope for a cure never left him, but reality about the permanence of his condition forced him to come to terms with it. Bouts of anger exploded in throwing unreadable magazines across the room. And his family never fully realized the extent  of his loss  until his journalistic report. He frankly describes the concurrent effects of his aging, and realizing its progress, intermingled with losing vision.

His descriptions of emotional turmoil express  my feelings, as well. I often throw a fit of exasperation when sorting out the junk mail, especially when looking for something important like health insurance.    Since my condition is caused by lifelong progressive myopic degeneration, I feel somewhat smugly exempt from the age-related label but know in my heart that  whitening hair and the slowing gait of a cautious Vision Loser combine to enhance the impression of aging in others and in myself. Hope, which I have never been given by doctors still brims up in me when I hear of progress in stem cell therapies. I spoke once to my retinal specialist about becoming a subject of a clinical trial, and he chuckled  as he informed me that no matching patients as myopic as I could be found for a trial population. Now, it takes a lot to get a grin, let alone a chuckle, from a sober retinal guy, so I gave up on that idea.

Grunwald expresses well what a profound life experience is vision loss, a force for change that brings us to a level of capability  and adjustment to age-related factors we might have otherwise just passed through without conscious awareness of  the changes or their effects. I personally would not have developed my guiding 5  level philosophy that has helped me sort out not only contemporary but also lifelong feelings. For example, as  Grunwald expresses, we develop a keen appreciation of those things we can see. I  often feel my greatest loss is not seeing smiles, simple accepted personal experiences which I never appreciated, and especially relish in the rare moments I catch one on a loved one’s face falling in the right spectrum of light. I also find myself more aware of my own smile and offer it to others as a conscious gift not as a reflex, whether they recognize my awareness or not.

Grunwald wasn’t a ‘computer guy’ like us, but he often describes his love-hate relationship with his magnifiers. They are both aids and symbols of loss and regain of power. His electronics use was, in the 1990s, the early days of recorded books and text to speech.   I wonder how this highly literate spirit would react to podcasts, ATT Natural voices, and  reading technologies we enjoy now, more than a decade after the vision loss transition he describes. A man of letters and printed text would surely appreciate the experiences with digital and spoken materials, even at a cost of intervening synthetic manipulation and complexity.

I bought  ‘Twilight’ well before I was into any noticeable level of print disability, was not ‘out’ to many colleagues,  just experimenting with MDSupport.or  community. Listening now to a book I can not read but know I need helped me gather both courage and humor from a wise older spirit.

Happily, there is a book interview with Diane Rehm on her WAMU radio show, an inspirational personality encouraging ‘intelligent and civil conversation’. This interview stimulated an open letter from the National Federation of the Blind raising issues about Grunwald’s openness about his visual difficulties and how that attracts negative images of blindness in the press. The letter writer considered him as a suffering soul who would benefit from more integration with blindness organizations like NFB, taking advantage of its valuable Newsline service, then on phone and now available on Bookshare. Actually the book, more so than n the interview, describes interactions with Lighthouse and New York City -based doctors. Listening again to the interview, I sense in Grunwald’s European-accented voice, more world weariness of a life-long journalist, uncomfortable about discussing personal feelings, and not fully conveying the sense of adventure, learning, and self-mockery apparent in the full book.

Belated thanks, Mr. Grunwald.

REFERENCES on Henry Grunwald and ‘Twilight’

Revised to add audio link on July 21 2008