Looking Down

When you’ve had a wobbly day and night (it’s taken me three days to write this), it’s always important to remember the motivation for your journey.  So, that is why, after a couple of weeks enjoying a lighter climb, upon reaching rocky and uneven ground, I’m feeling the need to stop and contemplate.

I’m finding that I’m rather scared.

Setbacks they call them and something I felt sure I was immune from.  All along I’ve always felt ‘am I really that bad?’ But then I have to think back to the wilderness ‘Mad Woman Walking’ days…Don’t get me wrong, I’m not in that awful place I was but I have got a bit of The Fear going on.  Avoiding the phone, worrying about what others think – when actually I shouldn’t as my journey does not require their thoughts and opinions. A constant mild state of panic as I open up my world…

A natural worrier, I often struggle when I’ve a lot on my plate.  However, when you’re climbing out the pits of hell, these things can drag you backwards.  So what do you do? You look down the mountain path travelled so far and look at how bloody far you’ve come.

After months of aimlessly wandering in and out of a mindless grey fug, Good Friday brought with it a stigmata (my mum called it rheumatics – same difference both are a pain) and a steady wave of optimism and excitement for the future.  For once I felt more liberated and able.  It felt like I’d shed a skin.  This lightness of feeling continued. It encouraged me to try and do some things I’ve not felt able to do in a while.  Things like: making phone enquiries (not so bad but generates more questions than answers),  venturing places other than the beach (varying successes and paranoia on eyes on me), meeting new people (revelations),  and setting myself a new personal challenge.  It appears as spring is being sprung I’m both enthused and petrified about the future.

Firstly, I need to describe my current climb as a mixed bag of terror and excitement which keeps scudding over me like the incessant April/May showers – they won’t eff off and let summer begin.  Shame continues to tug at my coat tails, like an annoying child.  But in clearer moments, I look around me and think ‘why should I feel ashamed?’  Well, that’s the thing, I’ve had years of shame and feelings of inferiority and inadequacy.  This worthlessness made me into a person who never asked for help as I didn’t feel I was worthy enough.  I’ve always felt there are far more deserving people than me out there.  I also don’t like putting people out or causing them stress.  So, the series of phone calls, referrals and enquiries, have unsettled me and tilted my world.  Talking about what I can do (well not always) and can’t do (well not always), actually means I do require help and assistance.  This all absolutely makes me want to run for the hills.  Being, as I can’t seem to call it anything other than ‘a burden’, is an awful feeling for someone who feels (on good days) a bit of a Beyonce when she looks in the mirror.

Questions such as: can you manage in the kitchen?

Well, yes, I can cook for my family and friends.  I’m a good cook.

But what can’t you do? Well…

And that’s where it all unravels.  It turns out I’ve been ‘coping’ (another awful word.  Who the hell wants to just ‘cope’?) for years.  Lighting, magnifiers, using an iPad, helpful family members (ahem) and supermarket online shopping, are all just a small amount of things I do to manage my family kitchen.   Holding my life up to such scrutiny is quite interesting but stomach churning.  Words such as ‘support’, ‘access’ and ‘disability’ are provided in order to reassure me.  However, this new clarity of vision means change.  Am I up to it I thought?

Therefore, I took myself to task.  Starting with facing up to the world around me.

I realised I needed to try and stand on my own two feet.  After all, I’m a big girl and relying on others for everything isn’t going to get me anywhere.  Therefore, becoming  more independent has shown me what I can and can’t do.  It’s brilliant to be able to see stairs again and not have a mini heart attack every time I reach a set.  The fear of free falling Alice style has dissipated slightly and the knife edge of going to a basement toilet has become smoother (don’t ask about basement toilets and no, I have not got s double life).  However, being left to wander can be troublesome.  I seem to achieve many embarrassing and comedic moments, that, if I allowed, could make pots of £250 on You’ve Been Framed.  In fact, Harry Hill could do a whole segment, maybe even a show, on my ridiculous shenanigans of banging into things, knocking things over and mistaking – I’m never sure if I’ve got the right end of the stick!  It all leaves me very dizzy and sick, along with a pounding head.  Bright lights, odd looks, struggling to decipher what’s on a shelf…I’m going to stick to the internet thank you! But, in all this whirlwind of emotions comes one thing I can do better than anything; which is that I can laugh, joke and talk about it.  Leaving me thinking: why should I feel ashamed?

My new found honesty has enabled me to talk openly to others.  I’ve even connected with other people with sight loss.  This is something I would never have contemplated a few months ago.  You see, living on the edge of the world, I often felt isolated – there’s no one like me.  I also didn’t want to admit to myself, let alone anyone else, how bad things were getting.  However, after one conversation with a fellow RPer (and runner.  More about that later), I was lifted onto a revelatory platform: I am not alone and guess what? I’m quite normal! Now, you may disagree with the previous statement as, quite rightly, we all know I’m quite nuts, but knowing that the thoughts and feelings which haunt me are not silly, that my winter fear of limited daylight and therefore running/walking hours reduced, lead to more anxiety, isn’t so stupid after all.  I’m actually allowed these emotions.

So, I felt I needed a challenge.  I felt a need to celebrate my life and journey.  And what better way than to run.

Racing, like I always do, to reach a goal, I grabbed at the opportunity to do the Great North Run for Retina UK.  After running my last (and first) half marathon with only one eye, was well, exciting to say the least.  The tears at ten miles and a quick call to my family kept me going, so much so, when I saw them at the finish line I sobbed yet again (I quickly repaired the situation as my middle child told me off).    Little did I tell anyone that the rough terrain was taking its toll on my vision and senses.  Along with the sun coming out (it was better when it was dull and rainy) and tiredness kicking in, my healthy time took a tumble (like me at mile eleven).  So, it’s been decided, to achieve greatness in September,  I’m going to have a guide.  I’ve been told this can be either one provided by the charity or a friend.  So far no friends or family have been very forthcoming…(applications are encouraged here).  My new found RP running friend gave me some wonderful advice, making my latest challenge feel doable.  I’m even hoping )dare I say it) for a healthier time.

Friends, new acquaintances, plans for the future.  It’s all very daunting.  But then I look back because I have to remember.  To move forward we have to understand the past.

Looking back to the deepest darkest winter, with only a smattering of pagan lights to brighten the gloom, I remember the best option was preferably to die rather than to carry on.  Don’t get me wrong, I didn’t want to do anything, I just wanted something to numb life – I went numb.  I became remote like an island.

But, then there was lightness and with it came facing up to things.  Feelings of shame needed to be quashed, normality leading to comfort.  My low week has been counterbalanced by my training.  I felt shaky yesterday.  It started out as easy – RDog walk, then I made myself do things like attending to ‘life tasks’ – things which you’d do easily but took me out of my comfort zone.  All too soon the anxiety began to rise.  I kept steady.  By late afternoon the stresses, strains and tiredness (I still struggle with ridiculous matchstick eye fatigue).  And then I went spinning: a dark room, disco lights, music and the bike.  Flanked by a bestie and the gorgeous godforsakeson, we raced our way through an eclectic set list.  All the day melted away and even though I couldn’t see the instructor, I was listening, with people I loved and killing it.  I think that should be my moto for life.

If you would like to keep following my journey, keep reading by following my weekly blog.

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1 thought on “Looking Down

  1. Lisa

    After a wobbly day you reminded me of the motivation for my journey. Thanks Swannie. Keep on keeping on xxx


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