I remember when I was first diagnosed with low vision and I was really struggling to get around independently due to my tunnel vision. I would often just stay home rather than face the things that were making me anxious. Being in unfamiliar busy environments would make me feel so uncomfortable that the thought of going anywhere on my own would fill me with dread.
Prior to my vision loss, I traveled on my own regularly. I worked as a singer performing at vacation destinations, such as hotels and cruise ships, all over the world. I wouldn’t think twice about jumping on a plane and taking off somewhere new. But being diagnosed with RP changed that.
For the first 8 months after my diagnosis I didn’t leave the house without my wife to guide me. I applied for a guide dog and mobility training but those things take time to happen and I found myself in limbo. So in this period of my life I found myself doing things so many people experience. I stayed home. Whenever my friends or family invited me anywhere I made excuses not to go. After I while I felt people start to drift away from me and that made me feel even more isolated.
The vast majority of people living with a disability have felt isolated and loneliness at sometime in their lives. This cane be down to struggling with mobility but it also can be due to the awkwardness some people feel talking to someone with a disability due to fear of saying the wrong thing and offending them. I know I’m not the only one who’s felt these things.
But time always has a way of making things better and even though I still get anxious in unfamiliar or busy places the difference is now I won’t let us stop me. I’ve got my guide dog now and when I travel overseas as I do regularly now I use my cane. I make sure when traveling by train or plane, I book assistance to help me navigate through busy terminals and stations. I’m not ashamed to ask for help because I understand that it’s not a sign of weakness, but a sign that I’m not going to sit home anymore and make recuses as I once did.
I can see a lot less now than I did when I was first diagnosed but my confidence in traveling around independently is so much more than it was back then.
The world is a beautiful and exciting place and just because I’m living with a disability doesn’t mean it’s not meant for me. There’s plenty more adventures to be had.
I’ll leave you with this poem that really sums up these feelings.
So many of us battle with what blindness really means
This thing that hides within us all from passed down faulty genes
A comfortable denial of where we’re really at
Fit in their box
put under locks and key placed under mat
Not ready for a guide dog
ashamed to use a cane
due to others false opinions that we feel we must explain
But even though we struggle
busy places hide away
using aids for our mobility is for another day
Believe me YOU are ready
I know that you are scared
but sight loss is much easier when we feel more prepared
For no one’s ever died from being judged by passers by
Don’t stop yourself from living because they believe a lie
There’s no such thing as “looking blind”
We still can use our phones
We’re capable of looking after children on our own
We still can do amazing things despite what we can’t see
But due to misconceptions rarely opportunity
There’s lots still isolated by the things that others think
I suffer with depression
anxious thoughts and moods that sink
I’ve felt my life was over
because my vision can’t be cured
But now I’m proud recite it loud
I’m blind and self assured
I’ve found my strength through weakness
my purpose I can see
I’ll educate our visions fate with my blind poetry
A message that it’s ok to be scared as faces fade
but there’s still hope do more than cope adventures to be made