This week not only have I had to discuss my feelings but confront them.  For so long I’ve hidden away because I’m ashamed of who I am.  You see, it’s embarrassing being me – falling into things, tripping up, walking into doors because I can’t tell if there glass there anymore, stumbling into a restaurant where people assume you’re drunk or stupid.  Then to go on to try and eat a meal with the table manners you’ve been taught but you can’t actually see what’s on your plate.  These dark moody restaurants might be sophisticated and romantic; I just end up stabbing around in the dark (literally with my fork).  Recently I suggested that if I’m going ‘out’ and now my decline in sight loss is also ‘out’, that I might be persuaded to have a cane and eye patch.  ‘Let them stare’ I heralded!  However, saying it is one thing – doing it is another.  That’s when I realised that I’m in the ‘in between’ stage – after denial, admittance, acceptance, comes ‘the in-between’

I used to play up to the drunken status: ‘let them think I’m a lush’.  That had to change though.  Living in a small (geographically and sometimes minded) town, I had to clean up my act.  This sent me underground.  Avoidance of situations, places and parties became my mantra.  Hiding was what I decided to do.  This can have different implications: you get dropped by people as they think you are either a) rude, b) boring, or c) hard work (yeah I am C but I yearn not to be!).  Result was that I became very lonely.  Not in the sense that I didn’t have loved ones around me, but lonely leading a double life.  So why did I make this choice?  To answer my own rhetorical question: I think I felt I had no other choice to survive.  

Speaking to an RNIB councellor this morning made me think.  The questions I had to consider all revolved around my very inner turmoil.  Turns out I’m completely normal to feel the way I do!  I’m a normal depressed person.  Now this is quite comforting and knowing this starts to ease the guilt.  You see, today I realised that I’m completely within my rights to have had a ‘mini-breakdown’.  I was told that ‘anyone would in my position’.  

Don’t get me wrong, although I’ve always struggled with RP, I’ve always had ways to cope.  My opticians have done all sorts of miraculous prescriptions and given me many patient hours of their time over the years.  Every hurdle I’ve encountered, since the age of 20, they’ve helped me find a way through.  Recent developments are beyond them.  I know this because their concerned faces during my (seems like) daily visits are both reassuringly supportive but also worrying.  

We looked yesterday at the photos of my retina.  This always puts me in a cold sweat as you never know if there’s been a deterioration of the cells dying.  Reassuringly (again) it was decided the RP isn’t really doing much.  It appears to cells are unchanged and this is brilliant news as it means it’s still pretty dormant.  The bad news is the fact that no one can work out why the back of my eye is cloudy.  The only way I can describe it is it’s like a fog.  I want to clean my eye as it’s like having dirty glasses.  When it gets so bad it goes to sleep, shuts down, I get sick, migraine etc.  And what was once a minor inconvenience, is now causing me to have to have someone with me to go to the shops.  

Being upfront with my situation and feelings about things is what I need to do.  Writing it down, sharing things, it’s cathartic and I want you all to understand.  I don’t require sympathy.  All I require is understanding.  And if an of you reading this are in a similar situation, please share, as it really does release the heavy burden that living with something awful can become. 

One thing I think I need to do is that the guilt I feel I need to let go of.  Him says that I’m my worst critic – whatever you think of me, times it by 10.  I owe people apologies for all those times people felt I was ‘sacking them off’.  Where it was easier to hide and let others think the worst of me, than actually say ‘I need help’.  Because, asking for help makes you feel like you’re a liability.  The guilt of putting myself first.  Overriding advice has been ‘be easy on yourself’.  This is something new to me as I always want to help people.  Helping myself doesn’t come naturally.  Unlike Cheryl Cole, I don’t think I’m worth it!

Next week has new hurdles.  A very expensive visit to a consultant and preparing ourselves for his diagnosis.  You reader (very Bronte, but then again I am also from the beautiful county that is Yorkshire) will need to prepare yourself’s for a mad ramble as I’ve got to keep talking: to move forward,  to become me, I’m sorry, but I’m going to have to.  

Useful links: 

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

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

http://www.retinasociety.org/

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

Learning to live with sight loss and telling people, is one of the hardest things I’ve ever had to do. Feelings of being afraid, isolated and ashamed are what hold you back first.  Pushing down the fear and moving forward not only takes bravery but people.  It’s the people around you that make it happen.  Help you move to a new and bright future…

After years of negative comments and ill educated people, I felt like dying.  Not in the corpse-like sense of the word but hiding from life.  Existing.  That was all I wanted. It got to the point if only half of me was up for it but bit by bit, that half went to quarter, then a tenth…until I reached the point of merely existing: it was all I could do.  A bright flame stuffed out.  Smouldering.  Gone.

However, existing was all very well and good.  Hiding away and burying one’s head in the sand can suffocate and the fight or flight instinct kicks in.  You see, I’m a survivor.  I realised I was being suffocated.  I pulled my head out and after some large gulps of air, some respite, some oxygen, I just wanted to feel alive again.  I wanted my life back.

Coming to terms with losing your sight, isn’t about self pity and tears, it’s about loss.  Losing something always makes my stomach turn.  I’ve always hated losing anything, no matter how small.  The very fact of this makes me fastidiously tidy.  Also, I have a way to commit things to memory: a mind palace so to speak.  Therefore, mostly I can cope with not losing things.  Unless one of the loved ones has moved something (cue irrational battle axe response), Sp I rarely lose the little things.  Although, this makes the loss of bigger things come much keener.  

In times of loss we turn to the ones we love.  We use each other as a crutch and channel strength like waves.  I am incredibly lucky to have had such people around me.  When I was expecting fire and brimstone, sackcloth and ashes, I have been covered in a blanket of kindness and wrapped in good advice.  

So what now?  With loss comes a need for solution.  A catharsis to help face the future.  I know there’s not always a longed for solution.  I’m not stupid:you can’t redirect the dead and you can’t reverse irreparable damage.  But there is always a solution.  I’m here to love my life and I’ll find a way through.