Advanced RP'rs

Living with Advanced RP (Retinitus Pigmentosa) These things are soooo true!


**I'm one of those "advanced RPers" who didn't jump in to the
discussion about the later stages of RP when it first came up. I
think this is because I am more focused on the emotional aspects
than the physical characteristics, and I wasn't sure I wanted to
post about how I'm feeling. The heavy grieving that comes with the
near-total and total vision losses of the later stages of RP is the
other side of RP that we don't talk about much. **

** **

**I'm down to less than one degree of a foggy tunnel, and
transitioning from low vision to no vision. I can't see Andy's
facial features across the dinner table anymore, my photophobia is
so severe I often find myself doing my chores and gardening with
both eyes shut tight against the glare, and when I call my guide dog
Trace to saddle up and go out, I don't even bother looking to see
whether it's Trace or my retired guide April there ready to go. I
just feel the difference in their fur.**

** **

**I'm learning Braille, honing the one cochlear-implanted ear of
hearing I have, learning how to access my computer with a screen
reader, improving my mobility skills, and learning other strategies
for functioning without vision. Indeed, I've been cleverly figuring
out how to function with little or no vision in my kitchen and the
rest of my house for years. **

** **

**A cure would be glorious, but I'm not sitting around waiting for
one. Life goes on and I'm going with it. One way or another I will
land on the other side of sight still connected to my world, still
functioning, still surrounded by people I want to be with, still
having a Life (and a good one at that). And yet, even with all this
determined resolve and resilience, I'm awash in an ocean of grief. **

** **

**We RPers and Usher folks have no corner on the disability and
grief markets, but there's no getting around the fact that loss and
grief are a big part of our territory. One grieves and mourns just
as deeply for loss of a life function as one does for the loss of a
loved one. Grieving is one of those universal Life lessons that
every human must learn, and for whatever cosmic reason, our lesson
comes in the RP format. **

** **

**It is not just the loss of the physical sight, but the loss of the
livelihoods and life routines that go with sight. Quitting driving
and losing independent private mobility... losing the ability to
keep up with the hearing sighted workplace... getting rid of all the
print books in our bookshelves.... Right now my signature is an
issue for me. I used to be a lawyer, and lawyers cultivate their
handwriting and especially their signatures, along with their
mastery of the language, for clarity of both expression and
personality. As my vision goes, the clarity of my signature goes,
too. It's a heartache every time I take pen to paper. **

** **

**Years ago, when the losses and the grieving were nowhere near as
hard and painful as they are right now, I talked about all this with
my cousin shortly after she had buried her husband after a long bout
with cancer. "It will get worse," she told me, "and it won't get
easier until it's over." I knew exactly what she meant. Just as she
had to walk through the unbearable grief of watching her husband
die, and could not start to put herself back together and move on
until AFTER he died, nor can I escape my own losses and grieving
pain. I just have to walk through it, and it is not going to get
easier until it's over.**

** **

**And you know what? That's okay. It's damn hard, and it's the way
Life goes. It's part of the process. My resolve is to walk through
this as fully and completely as possible, so that I can move on as
soon as possible, as whole in spirit as possible. I'm learning that
going blind now is harder than being blind is going to be, and even
as my spirit aches with the losses, I reach for a peace in resolute
resilience and most of all, hope and faith in myself and the love
and support I am so fortunate to have in my life. **

** **

**Thinking about the "being blind" part is still hard, but getting
easier. I know and admire so many who have no sight, some who have
never had sight at all, and when I watch them I am reassured that
Life is not only going to be do-able, but just fine. I recall a
recent conversation with a friend who has been blind from birth
about perceiving the world with and without sight. I told him about
a blind person I know of who just can't get the concept of
transparency, and is mystified how anyone can see through a pane of
hard, solid glass.**

** **

**"Oh, I don't have a problem with that," my friend said. "My
problem is pictures."**

** **

**"Pictures?"**

** **

**"Yeah, pictures. How do you put a three-dimensional world onto a
flat sheet of paper? That just blows me away."**

** **

**That blew ME away. It dawned on me that my friend experiences the
world in a much deeper way than I ever have with my sight. He has a
physical, kinesthetic and "up close" sense of his world that is not
possible to achieve when you rely on sight to perceive a
three-dimensional world that can be put onto a two-dimensional piece
of paper. **

** **

**He has helped me realize that my world without sight will not
necessarily be diminished. It will be different, and probably more
difficult, but not diminished. To know this does not make it any
less painful to lose the sight, any more than the fact that my
cousin was able to move on and love again after her husband died
makes it any less painful that she had to lose him in the first
place. **

** **

**But somehow, it does make it easier to know that on the other side
of sight, the other side of RP, the livelihoods and life routines
can still be good even if they are different. **

** ** ** **

**Mary Dignan**