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Stories From the Edge of Blindness

In 2002, Retinitis Pigmentosa changed my life. This is my story of a slow approach to darkness.

Month

September 2021

Horizon

Some days I wander around my house, feeling lost and disconnected, no grip on the texture of the morning or the space around me. I write about having forgotten who I am, but the truth is that I have never really known. My life has been a series of failed attempts at being who I believe others want me to be, failed attempts at being kind, having substance, living with interest and curiosity. I am not curious. I am simply hanging on, waiting for something that never comes because it has no shape, because the edges are dull, because the layers are a fiction, a fantasy, a ruse. I keep hoping that the horizon holds something for me, something that will glue me back together, lift me out of the ground. The horizon lies; it looks close enough to touch but is forever looming, taunting, out of reach.

When I was young, I thought I was supposed to be beautiful, was taught that beauty lives on the skin and the physical impression you leave behind when you have left the room; no-one talked of the beauty on the inside. The inside can’t be seen. I tried to be beautiful, but beauty is the luck of genetics, a luck I didn’t have, so instead, I retreated into shadows and marked up my skin; anything to be unseen. Being unseen is lonely, grows tiresome, has a weight that becomes unbearable. It is also an addiction, a habit, a way to give meaning to your life . It leaves you wandering and lost, looking for shapes in the darkness, coming up empty handed. But still you search.

I came to define myself by what ailed me, by loss and blindness, the afflictions of self loathing and now those that come with the cruel strike of the clock. I will always struggle with the emptiness and the wandering, unable to take shape or give off light, but I also understand that the inside can be seen, through poetry and art and acts of kindness. Perhaps the horizon isn’t a villain after all, but is there to guide the way, to remind us that life is both beautiful and unruly, cruel and abundantly generous.

Telephone Phobic, Demoralised and Smudged Out by Middle Age

I have to start this with a bit of a warning; it is possible I am getting a tad obsessed with ageing; aka, I may be in the throes of a mid life crisis.

For the minute, let’s just say I am in a bit of a contemplative space, steadfastly refusing to accept that I am no longer thirty five while complaining to my husband about my aching hip and arthritic knees. I am also about to have cataract surgery, which despite my knowing it is because of RP, still seems like an old person thing. But, I am thirty five (right?), so what the fuck? Fine, I am not thirty five. It feels like an affront that I am now officially middle aged, no longer desirable, and probably losing my memory earlier than I should because I spent so many years in and out of drunken stupors. But, I can’t deny that I also feel happy. How can one person possibly deal with such an opposition of emotions at once? I wish I could say I do so gracefully and with an open mind, but the truth is that I am not sure I really deal with the emotions at all. I hide under a rock, live inside a shell of inappropriate delusions, pretend I am not afflicted with a myriad of health issues, and sometimes, as the cherry on top of the denial cake, get completely smashed. It leaves me with one very burning question; why the hell doesn’t anyone tell you how fucked up getting older is and how it leaps on you overnight and out of nowhere? I would reject this whole ageing thing if I could, but time is stubborn and cruel and clearly in charge. I am merely a demoralised and somewhat sad woman who is being systematically smudged out.

I have learned however, in my years of acquiring wisdom in some pretty crazy ways, that there is always a flip side. Did I mention that I also feel happy? I do. I am living in a place I have dreamed of living for most of my life, I have an amazing husband and a wonderful family and I am alive. I am lucky; for all of my complaining, I do know that I am incredibly lucky. I am also angry sometimes and sad and confused and frustrated and joyful and playful and lacklustre and droopy and, well, you get it; it’s that human condition thing. At the moment, I feel disbelief about the avalanche of middle age, terrified about and grateful for the impending cataract surgeries, and insanely fortunate to be able to walk down my street and see the beautiful landscape around me. I am also feeling sad because it is getting increasingly harder to read, but hopeful that the surgeries will remedy that somewhat….a post for another time.

Damned statistics

I don’t reblog a lot, but I think this is an important and educational post and felt I had to share.

RD Ramblings

People who know me well will be aware that I’m not a fan of numbers. In fact, I detest the darn things. Maths was my worst subject at school (aside from the much-dreaded sport); I never learnt my times tables; and although I can easily rattle off huge chunks of ‘Hamlet’, I struggle to remember my own ‘phone number. And don’t even get me started on a task in my previous job which involved working out standard deviations from cohort means in order to calculate student prizes.

However, I acknowledge that numbers are important – especially in these days of rising Covid cases at a time when we’re all getting dragged back to the office by our hair, kicking and screaming (did I mention that I’m not looking forward to going back?). In fact, it amazes me that although the daily infection, hospitalisation, and death figures in the UK…

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Palatable

In my middle aged face, I see both echoes of youth and glimpses of what I will be as an old woman, but my reflection today is muddled. I am unrecognisable. My eyes grow cloudy with the passing of days and the shape of my jaw takes on the weight of decades steeped in grief. I can no longer turn the odd curves of my face into something palatable. My features change with the seasons, grow heavy with the stress of caring for loved ones, watching them die. One day I will be the whisper of a wraith, but today I am clay moulded by the hands of time, prisoner to the piercing fingers of the clock. What was colourful is now grey, no green pastures on the other side. I am aching bones and sallow skin and  scars born of an unwelcome wisdom. I am creaking knees and pain so sharp, it wakes me from sleep, although my sleep is shallow now, plucked from my grasp by hormones that betray me, fill me with fire and sadness and anger, all without roots or reason. I am a farce of time, a perpetual act of coming unhinged. I am middle aged. I am invisible.

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