Eye on the Cure

Eye on the Cure is the official blog of the Foundation
Fighting Blindness, a private non-profit that raises funds for research
targeting treatments and cures for vision-robbing retinal diseases. Authored by
Dr. Stephen Rose, the Foundation’s chief research officer.
Brother Virginia- A big sound and a big heart.

If you haven’t already heard of them, you probably will soon.
Brother Virginia, a Nashville-based duo mixing pop, country and rock, has been
on the road, crisscrossing the United States and amassing a grass-roots
following, over the past couple of years. Steve and Eric have also released a
new EP, Southern Summer, the proceeds from which are benefiting their favorite
cause, the Foundation Fighting Blindness, through July 15.
a candle, the Highs and Lows of Vision Loss.    
I was 19 years old when I found out I was losing my vision
as a result of a retinal disease called retinitis pigmentosa. Halfway through
college, I was perched between girlhood and adulthood; I was developing my
adult sense of self, planning what my grown-up life would look like. The news
that I would slowly go blind changed everything.
As my new memoir, Now I See You, attests, it didn’t change
everything for the worse, but at 19, I didn’t clearly understand this. I didn’t
clearly understand much of anything, really, that summer; everything was tinted
with a glaze of fear and foreboding, obscured with the haze of confusion. The
doctor who diagnosed me explained that I might end up what he called “legally”
blind, or possibly more blind that that.
Besides being terror-inducing, this was also bewildering.
I’d had no idea there were different varieties of blind. In my very limited
experience, people either had vision or they didn’t. If I ended up blind—legally
or otherwise—how would that affect my life? Could I have children? Could I wear
makeup? Would I be able to support myself?
Every question gave rise to a dozen more. The whole thing
made me feel enormously demoralized.
I considered the two facts that were more-or-less certain:
1. I would lose my vision.
2. I still had vision now.
In light of this, the smart thing to do, I concluded, was to
make the most of my vision, while I had it. An added benefit of this strategy
was that by taking on grand adventures, traveling the world and throwing myself
into exciting romances, I wouldn’t have to think about my eye disease and the
million disquieting questions it raised.
My parents had discovered the Foundation Fighting Blindness
a few weeks after my diagnosis and become involved immediately. My mother
attended VISIONS, FFB’s annual conference, and came back with names of
specialists, titles of books and phone numbers of people to meet, including
other young women who had RP and were living full lives. My aunt threw herself into fundraising efforts. My
grandmother prayed. And my father, a doctor, hit his medical books in an
attempt to understand my disease and possible treatments. I kept myself at a
safe distance from all these coping strategies, having found a very effective
one myself, which was “Cross That Bridge When I Come to It.”
I used my remaining vision to do the things I loved—reading,
acting in plays, traveling. Later, that involved taking in the sight of the man
I loved and would marry, and soaking in every detail of the three children whom
I treasure more than anything. It was vision well spent.
But the problem with not preparing for the inevitable is,
when the inevitable comes, you’re not prepared. My field of vision shrank; I
developed color blindness, lost depth perception; I developed cataracts. I was
declared legally blind and registered with the New York State Commission for
the Blind, which provided me with services like cane training and adaptive
technology instruction. I was, very belatedly, building an effective coping
strategy, but I was still missing something critical, and that was emotional
Finally, I summoned the courage to attend a local meeting of
my Foundation Fighting Blindness networking group. At first, I was terrified;
there were blind people there, fully blind folks, with canes and guide dogs. It
was what I’d spent nearly 15 years running from. But then they started talking
about the challenges they faced, their fears and hopes, and it sounded so
familiar. So much of what they were voicing is what I’d struggled with over the
years. All this time, I’d thought I was the only one.
Had I never become involved again with FFB, I don’t think I
would have been able to write my memoir, Now I See You, which is out this week.
Over the past few weeks, I’ve heard from countless individuals whose lives are
affected by vision loss, and reading and responding to their messages has been
one of the most gratifying experiences of my life, second only to raising my
I don’t know why knowing you’re not alone in your struggles
makes those struggles easier to bear, but it does. My book begins with an
ancient proverb: “It is better to light a candle than curse the darkness.” It’s
exactly what the Foundation Fighting Blindness has done in my life; it’s lit a


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