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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.

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Middle Age

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.

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.

The Punisher

You know those days when the words just won’t surface and you feel blank inside?  Those are the days that make me stress and pace and tie my thoughts into a tangle of barbed wire.  Those are the days when I call myself a failure and question my choice to be a writer.  How can I write if I am empty?  If I have nothing to give?  If I can’t even form a coherent sentence?    I suppose I am hoping that this brief post will kick me back into action

I am having some health issues – not serious, just annoying – and they have been keeping me away from writing; don’t worry, I am not going to enter into a litany about a bunch of boring health problems that come with middle age. Although, I will say that if you are reading this and you are under 40, take care of your bodies; you will be so grateful you did. I wish my brain could just keep on grooving, no matter what protests my body makes, but that just doesn’t seem to happen.

My brain feels dormant, but the punisher inside of me never sleeps.  I have felt like crap and still I beat myself up for not getting any writing done.  I sit at my desk, in pain and discomfort, and tell myself that I am a useless fuck who can’t even come up with one word for a poem I have been working on for ages, but who gives a crap because I am total shit as a writer anyway; the string of recent rejections proves it.  No one can argue with the punisher.

Then, the punisher chastises me for being negative and too stubborn and too stupid to create a positive dialogue in my mind; if I could just think good thoughts, everything would be better. But, my brain isn’t wired that way.  Something must be wrong with my brain.  I am totally screwed and should clearly never attempt to write another word. I should probably just stay in the house for all time, so as not to inflict people with my negative defective brain.

So, I get some ice-cream and sit on the couch, and the punisher sits right next to me, whispering in my ear, telling me that I am a fat loser who can’t even commit to a healthy lifestyle change. If I were a good person, I wouldn’t eat ice-cream, or crisps or sourdough toast.  So, now, I am a useless fuck, wannabe writer, fat loser, bad person with a defective brain.

The only thing left to do is go to bed.  The punisher has been particularly brutal this week, so I am exhausted and actually fall asleep, and stay asleep until it’s 4am and time to get up.  I stretch my  legs. I feel a bit weightless.  The punisher is nowhere in sight.

Sometimes, it takes a few hours of allowing myself to sleep and check out, to realize that it is ok not to write every day, to give myself time to heal when my body is in major protest mode and let my brain be still for a while.  It is ok to be whoever I am in any given moment and to eat ice cream; it doesn’t make me useless, just human.  So, fuck you punisher, because seriously, sometimes a bowl of broccoli just isn’t going to cut it.

The In Between People

I never understood morning people; up with the sun, fresh start to the day.  Maybe it’s  because the sun has always felt like my enemy, or that I woke up hung over (a lot), or maybe I have always been a little bit off kilter, out of step and misshapen. I could never find a rhythm among the sun worshipping masses.

I was the quintessential night person; awake until 2 or 3, getting up anywhere from 11am to 2pm, depending on how much I drank the night before.  I loved the feeling of decadence that came with being awake when risk was alight in the city, and anything could happen.  I reveled in the quickening pulse of everything that comes after midnight.  I felt alive and creative in the late night hours.  But, time has a way of fucking with you, speeding  by so fast that one morning you wake up, middle-aged, hung over and feeling like crap. The hours beyond midnight have lost their allure.

So now, at 48, I am an in between person;  I get up at 4am, when the city is at its most quiet and the darkness protects me from the clamor and chaos of the sun. The world is so still, I feel illicit and delicious, a willing trespasser.  4am doesn’t feel like morning or night, but breathes beautifully somewhere in between; it is an introverts safe haven, a time for creativity to be uncloaked.I feel energized by the silence so early in the morning and empowered because I am awake for the arrival of the sun, rather than assaulted at noon by the strike of its barbs through cracks in the curtains.

I am writing more than ever now, in these hours when I feel like the world is all mine.  I sit at my desk, in love with the fingers of darkness, getting lost in the words; I watch the day tumble softly in through the windows, grateful to be one of the in-between people.

 

 

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