This week I want to talk about something that I believe needs to be spoken about so much more. What’s it like to transition from living with low vision to only seeing a blur.
Those of us living with conditions that are slowly taking our sight, know too well the fear of worrying about how our lives will be when we can no longer see the faces of those we love, our partners, our children and even ourselves. To no longer be able to look into a mirror and see our reflections. I’ve always said we spend far too much time worrying about things that may not happen or haven’t happened yet, and we should focus on what we have now and appreciate the little things in life.
However, now I find myself at the stage of my vision loss journey where the little remaining central vision I have is at its end. I’m not seeing the details anymore, and when you have a condition like Retinitis Pigmentosa, it means that all I’m currently left with is this small tunnel of vision in my right eye. I’ve always thought that when I reached this stage I’d be scared, but honestly, I’m not. It’s more a case of feeling sad and frustrated, but mostly sad.
There are still so many things I want to do and see with whatever vision I can cling to. Yet throughout everything I’ve learned from the challenges I’ve been through I understand that the feelings I’m experiencing are perfectly natural. I now know not to be too hard on myself and allow myself time to grieve. But like everything in life, I know these feelings won’t last. No matter what we always find a way to adapt and move forward.
For me it makes me more determined to do things now, not to wait or put off dreams and goals. Living life with this mindset is truly a blessing and despite the challenges life has given me, I know just how lucky I am. For years now, I’ve written poetry to help people around the world come to terms with going blind and in times like these I need to take my own advice.
Wait
For a while I’ve been preparing
but I don’t feel prepared
Instead of feeling RP strong
right now, I’m kind of scared
I’m noticing another drop this time more haze creeps in
Seems no one has an answer
sights end will now begin
My central visions cloudy
my peripheral left last year
No matter how many times I blink
can’t seem to make it clear
I’m staring at my children
I’m ticking off my list
Of all the things I long to see
before life’s beauty’s missed
I’ve got a trillion questions
that keep me up a night
Will I still be the man they need
when I’ve lost last of sight?
Don’t want to be a burden
should be me looking after you
I’ll catch a tear when cracks appear
I’m meant to be the glue
But how can I catch teardrops
if I can’t see them fall
How can I be the keeper
when I can’t see the ball
Suddenly I see the answer
it’s always been right here
inside my heart and soul, a voice
it’s time I need to hear
It’s written in each poem
each feeling I inspire
If I don’t lead by example
then that makes me a liar
Through this I’ve found my purpose
the man I’m meant to be
But with it comes a catch
that I’m not meant to see
This tunnel is my focus
This blur it seems my fate
But just now I need a timeout
A little longer blindness wait.
