Living with Retinitis Pigmentosa

I’m sitting with my kids and parents at the Look Out restaurant in Hout Bay when a man approaches our table.

‘You have beautiful eyes. Really beautiful. I just had to come over and tell you that.’

Although I have been offered this compliment throughout my life, I’m still flattered. Especially since I am becoming aware of fine wrinkles and grey hairs appearing at a frighteningly rapid speed.

‘Thank you so much,’ I reply with a smile (possibly fluttering my eyelashes).

I turn back to my table  and reach for the salt. The back of my hand brushes against something and a shatter of glass sounds through the restaurant.

‘Oh dear,’ says my mom who is sitting to the right of me. I look over at her and with horror, take in that my mom’s  lap is covered in red wine and that there are a countless pieces of glass shattered on the floor. ‘Damn’, I think, ‘I’ve done it again’. These days, a meal isn’t complete without me knocking something over.  A waiter has come scurrying over and I am sure that everyone in the restaurant is staring.

It’s because I lost my concentration for a moment when that man complimented me on my beautiful eyes. I was flattered then, but right now, in all honesty, I would swop my beautiful blue eyes for any pair of eyes at all, as long as they had 100 percent vision. Or even 50 percent vision. Yes, I am blessed with beautiful blue eyes, but I am cursed with Retinitis Pigmentosa, a genetically inherited eye disorder where the sufferers’ peripheral vision disappears, leaving them with tunnel vision and finally robbing them of their sight altogether. It also dramatically affects your night vision, essentially leaving you completely blind at night where sighted people can still see quite well.

Luckily, my mother is saintly in her patience and reassures me that the wine spill is fine, even though I know it must be uncomfortable and she probably won’t get the red stain out of her trousers. In fact all those who love me and are close to me are considerate and aware. My lovely girlfriend always holds me close and steers me through the busy city centre, my kids grab my hand to cross the road, warning me when there is a step coming up.

Although my family knows about my eyesight, most people don’t. It’s not uncommon for casual acquaintances to inform me that they waved to me for ages the day before and  to ask why I had ignored them. Or for me to be introduced to someone, not realizing thatt they are trying to shake my hand. It is generally their confused look that indicates to me that they have probably offered their hand for me.

Grocery shopping can be a nightmare. No one is thrilled to have someone push a trolley into the back of their legs. If I try to apologize and explain that I’m partially sighted it only confuses them.

Having lunch with my kids

Having lunch with my kids

PR vision. This is more or less how I see my kids when I sit across a table from them, focusing on my daughter Hannah's face

RP vision. This is more or less how I see my kids when I sit across a table from them, focusing on my daughter Hannah’s face

Although I am perfectly capable of running a busy household looking after four kids, we have all had to compensate. The kids know that if they leave something on the floor, I’ll probably trip over it, and they know to give me a wide berth when I’m cooking in the kitchen, especially when I’m rushed. (side note. It is NEVER a good idea to be rushed when you have RP, as it is bound to cause accidents)

There are oh so many more challenges, far too many to mention, however the biggest psychological challenge for me to overcome is the fear of deterioration. No one can tell me how fast my eyesight will disappear, and if I’m honest, I am terrified of going blind. Will I walk into walls, what if I don’t see the fly in my soup, how much more vulnerable will I be? I have a dear friend who has been completely blind from birth who is unbelievably independent and cheerful. I cannot imagine I could be like this. In truth, I have been sighted for most of my life and in spite of compensating as my eyesight deteriorates, my legs are often covered in bruises and I have had concussion twice.  I would love to say that I am brave and facing this head on, but there are days I feel in a flat panic.  I don’t want to go blind. I’m scared of the dark. How will I cope when reaching over for the side light can no longer offer me reassurance after midnight?

Luckily these feelings don’t plague me often. Mostly I go about from day to day. I live with a hope that my sight won’t fade too fast. I live with the cautious optimism that one day there just might be a way to restore ones sight and turn the tide on Retinitis Pigmentosa.

I mourn for the sight that I’ve lost and feel extreme gratitude for the sight I have left. Long may it last.

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