With Mothers Day just around the corner, I have been
thinking a lot about my mother. There is
one story in particular I would like to tell you.
A number of years ago, Mum was diagnosed with age related
macular degeneration (ARMD). Oddly, she
had wet MD in one eye and dry in the other. Mum was of the generation which held that a
visit to the doctor was a last resort, and so her eye condition was well
advanced before her first visit to an ophthalmologist. Like many others Mum struggled with the loss
of her central vision. She was no longer
able to drive and seeing print was a challenge. She invested in black marker pens and began to
use a CCTV Reader.
All of this occurred some years after my own loss of sight. While
I was able to help Mum with some of the practical challenges associated with
changed vision, there was one particular incident that in retrospect stands out
for me. I had written my first book, Ex-Sighted, A New Vision. While we were staying with Mum on one of our visits,
Lyle and I decided we would read the book to her, one chapter at a time.
Lyle came to the chapter about my friend, Norma. As a young adult Norma was diagnosed with RP,
a condition that usually results in complete blindness. Norma had told me about her feelings when she
was initially diagnosed with this condition – feelings of anxiety, confusion,
denial, sadness, anger and depression.
As Lyle read the story out loud, I happened to glance up at
my mother. There were tears streaming down her face. When I asked Mum, whose
first name is also Norma, what was wrong, her response surprised me.
“That’s me,” she said. “That’s exactly how I felt. You have
written about me.”
While RP and macular degeneration are completely different
eye conditions, my mother had totally identified with the emotions that are
prevalent with adverse change. I think
that it was this incident that underlined for me the need for sharing and the
benefit of support groups in this regard. Support groups provide a space where we can
share our feelings about changes in sight.
They are a safe haven for us to share our personal challenges and to
encourage each other in the knowledge that other people do indeed understand
what it is like to not to be able to see, or at least not to be able to see as
well as we used to.
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