Coming Out of the Dark…

Throughout my rollercoaster existence, my dreams have always shaped my day and reflected my inner struggles.  That’s why the reoccurrence of the ‘I can’t walk as my legs cramp and won’t work’ dream came two nights in succession this week.  Both after dark days of anxiety and worry.  Don’t get me wrong, for the most part, I’ve felt more zen than zonked this week.  However, I think the implications of what the future may or may not hold, after the surgery, have hit me.  Therefore, applying Freudian theory to my dreams means, once again in my life, that I feel disabled in attaining my future goals and dreams.  In a nutshell, I’m struggling to reach my journey’s destination.

Deep I know.  But, this needs to be understood so I can succeed and move forward.  Therefore, I’ve had to start thinking about best/worst case scenarios.  Once upon a time I’d hide from such an idea! Firstly, because (I don’t know if you know this) I’m stubborn and refuse to let a little thing like a degenerative eye disease to get in the way of my plans.  Secondly, because when the dark days began to descend, I shoved my head in the metaphorical sand singing ‘Things Will Only Get Better’ in my head.  False optimism that never worked for Tony Blair and never worked for me.   So, as my good friend would say, it meant ‘the scales fell from my eyes’  and I began to tackle stuff head on.  This, being me, I started writing lists of the things I need to do before surgery (BS) and what future lays beyond the 29th (AS).  

BS (ironically named as sometimes, in my angrier moments, I shout this rather loudly in my head.  Along with ‘why me?’ And ‘Eff this BS’) I have decided to take the approach of someone going to an expensive retreat for the weekend.  This is rather funny in the fact that the hotel next to the hospital is a spa hotel.  ONE I WILL NOT BE ABLE TO USE!!! So, I am currently shedding the bag lady look and attending to hair, nails, skin and teeth (I want to look my best for the Prof as he is very Daniel Craig like and has a velvety Scottish accent).  I am also making sure I’m super fit:  Running, walking and spinning (the first two have been hard on the beach in gale force winds with one eye…).  I’m taking my vitamins and the Prof has me on high strength vitamin A wanker pills (actually spelt Warnke pills but I name them after whomever has upset me on the day).  I’m also on the happy pills, which, Him tells me, have made me less of a zombie and someone who now is able to watch telly, interact with others and look less dead behind the eyes.  So, getting my game on is getting me there slowly! Things left to do are: sorting the house out (it’s like I’ll never come back), shopping for beautiful eye patches (struggling to find the ones I want so I think I’ve found a niche business for sequinned and satin patches) and making my my hospital outfits with the goal of impressing the Prof (the Him will be panicking now but he shouldn’t, he should be pleased I’ve found a doctor who I like and trust).  

So, optimistic BS is revealing a new me.  Of course I’m plagued with nagging doubts and worries, but all of the above is keeping me busy because the AS list is rather more daunting.  What none of us actually know is: How bad has the RP affected the sight in my right eye?’  

RP, or Retinitis Pigmentosa is a degenerative disease of the retina.  Usually sparked in your teens (as was the case for me), it’s a condition that leaves you night blind and with a deterioration in your tunnel vision.  I was twelve when I realised I couldn’t see my m the dark and twenty two when I was as diagnosed.  Petrified, thinking I was going to wake up blind one day, I decided I wasn’t going to let it beat me.  I had my family, worked, gained my degree, overcoming many obstacles in my way.  I never let it define me and I’ve never let it hold me back.  However, over the past few months, it was starting to destroy me.  You see, I rarely talked about it.  At first I think it was because it didn’t matter.  However, later on I became embarrassed and ashamed; a lesser person and I didn’t want to ask for help.  To define the progress of the disease I have to turn to my good eye, the left.  You see, we all hope AS that the right eye is going to be more like that.  What can I actually see?

The disease has progressed to the point where I can now see better (not like you) in the dark.  I suffer with glare and tunnel vision.  The sun blinds me!  As do lights – if you ever see me walk into a bright room or super supermarket you’ll see me squint.  Also, within half an hour I have motion sickness and a headache.  How much of that will ease we don’t know.  The Prof reckons as I’m right handed that as my lead eye (which eye would you use to line up your aim to shoot your husband Mrs S?) that I’m at a severe disadvantage.  I also panic at stairs.  I have a fear of falling and struggle when they’re not marked on the edge.  I can see faces and features in my left eye but I can’t recognise people as their faces are just a blur in my right.    So, how much of this will improve we don’t know.  But what we do know is that there’s hope.  That golden number of 60%

Future dreams of AS are therefore shady and I’m unsure.  But what I do know is I’m not scared anymore as I’m coming out of the dark.  

Useful links: 

http://www.retinauk.org.uk/

https://www.rnib.org.uk/

http://www.retinasociety.org/

https://www.blindness.org/retinitis-pigmentosa#rp

1 thought on “Coming Out of the Dark…

  1. Ann Arden

    Lucy,you are an amazing woman and very brave and your ramblings are so sad but heart warming and I think other people with their own problems will find them inspireing .
    Love Annxx

    Reply

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