I used to love the summer. The beautiful blue sky, the warm sunshine in the morning pouring through the windows. My hair swept back in a ponytail, wearing any old shades that worked with my outfit. The smell of sunscreen. The sound of ice cubes clinking in a glass of something fruity. Catching the sun on my shoulders. Driving as the sun sets with the windows down. Beautiful evening skies still aglow, even as 7pm rolls around. It really was my favourite season.
As spring starts to peep through clouds my mind fast forwards to summer, only to be met with a different feeling. As a person with Retinitis Pigmentosa, I can no longer freely enjoy the sun anymore. I long for the days of sunglasses being for comfort and not necessity. Nowadays I have constant anxiety, making sure my prescription sunglasses are on hand, just in case the majestic sphere of gold decides to grace us with its presence! Each year I embark on a depressing and ultimately hopeless search for a wide brim hat to fit my gigantic head. Why the stress? Studies have shown, that exposure to the sun’s rays, are harmful to the retina and as mine are pretty much buggered; I have no desire to help my disease along in any fashion.
I am now looking at handheld parasols and feeling quite Jane Austen about the whole affair. In fact the first time I saw a parasol of this nature was in Mary Poppins. Julie Andrews looked so elegant and sophisticated. Chances are, I will just look like a pretentious cockwaffle on the school run. Should I care what people think at this stage? Do I really have the luxury of taking on that way of thinking given my condition? Am I going to look back in 10 years’ time and wonder why I cared how I looked to others? People will stare at me with a brolly. People will stare at me with a white cane. People stare at me anyway. Sod it, I’m getting that parasol!
I have been enjoying the freedom of Covid a bit more than previously articulated. As I have mentioned before, I look a bit different to most folk. For the most part I have made my peace with it but being born with facial palsy can be a tough ride. Having to wear a mask everywhere now though, has given me a wonderful insight. I now know what life is like for everyone else. In this brief, Covid restriction filled time, I can stroll around and interact with others without any stigma. No frowning. No double takes. It’s really quite liberating.
Kids walk straight by me without a moment’s hesitation. Adults engage in conversation freely with a warm smile. I never get that and I am loving it. I know that normal treatment will resume when masks are a thing of the past but right now, as someone who will never blend in, it’s nice to be part of the crowd.
I guess as my eye disease progresses, I will no longer see people staring at me. That said, you don’t have to see it, sometimes you can actually feel it. In the beginning, in my search for a humorous quip in the wake of my RP diagnosis, I remember thinking, “Wow, even my eyes don’t want to look at my face!”. I did laugh but my humour is rather dark and twisted at times.
For now I will pop on my shades, prescription of course but still cute. I will accessorise my outfit with a glorious parasol and continue to rock my mask and enjoy the new freedom that it gives me. Sometimes I impress myself. I can really find the silver lining anywhere! I am feeling more Mary Poppins by the minute.