Getting My Game On.

Facing my fears, being brave…I have to brazen it out this week, and now I’m exhausted.  I’ve had a child’s maybe broken ankle (thankfully not but I was on the motorway when I got the call), a trip to the big smoke and a party and sleepover to contend with (no sleep and anxiety means I haven’t felt this since the late nineties).  To say I’ve wanted to hide away and cancel everything on numerous occasions, is no exaggeration.  

Firstly, the preparation of such events has been overwhelming.  The most exhausting being transforming from the bag lady look (which I’m now very good at sporting), to making myself look mildly presentable to be seen by the mass public.  So, off I cast the Rosie Dog haired thermal leggings, old jumpers and thick socks.  The dust has been blown off the make up bag and hairdryer.  Long forgotten clothes were reunited.  I found my wedding ring (I know!).  Meanwhile, Rosie Dog’s big brown eyes looked at me nervously, anticipating a lull in the ‘mad woman walks dog for miles’ scenario.  With the mask on I have had to face a world as a blind woman.  Easier said than done.  Luckily, my cheerleaders have been put in full force.  

Wednesday: London was big and daunting. My big cheerleader and recent tour guide – Him (who likes to ask questions about things I’ve already told him and give out orders like I’m a member of his staff) managed to get on my very last nerve (this is normal when I’m anxious.) Monosyllabic and tightly wound, I was ready to snap shouting ‘take me home. Take me home!’. You see, it was double whammy time: big wide world with PEOPLE IN IT and D-Day for prognosis.

After a relatively quiet tube in, but a snail-like cab, which dropped us off outside the wrong eye clinic (thank God – it looked like the booby prize), we eventually (rather shakily) reached the Prof’s clinic.  A lovely assistant (she made me herbal tea all day) lots of tests (disaster D minus results, but the ladies were very kind about it), drops (I now couldn’t see a thing at all!) , we eventually met the man himself.  

His initial response was that he wasn’t sure if he could help.  I admit, at this point I was teetering.  I’d already parted with my mortgage for the month (metaphorically) and he was going to send me off skittering back to the end of the earth on the East coast. However, with more discussion he began to understand that I wasn’t a madwoman (the loss of the bag lady threads helped) wanting a cure for the incurable but instead, I had another issue.  A spell under his microscope and he conceded that the lens in the front of my eye was a mess and needed sorting.  Further pictures were studied and he felt I had filthy jelly at the back of my eye.  

‘There was a chance’ he said, ‘A chance? ‘ I said. 

‘Yes, of removing the jelly.  I might work’

‘Might work? I parroted.

‘60% chance’

‘How?’

‘An operation.  2% chance it might go wrong’

At this point the stats and possibilities were whizzing through my head.  What did I have to lose that I hadn’t already lost? I need my life back, I thought.

‘Who does this and where do I sign?’

‘Me and they’re conditions…’

Hence another test, this time an ultrasound.  And this is where he got interested and really bought into helping me.  He was shocked at how back the retina looked.  He waved the picture at me and I laughed ‘I can’t see. It’s no good showing me!’

He helped me to Him and the lift and they discussed how the pictures told a real story.

‘Game on’ I thought.

One hour later, Him (my unreliable narrator) was guiding me on and off the tube and parading me around Trafalgar Square.  It was like playing blind man’s buff.  ‘Where are we?’ 

‘There’s pigeons and a tall thing’

‘That’s Nelson’s Column’ I exclaimed! And the game continued until he’d sat me down in a pub, so we could eat and debrief (he’d not eaten all day and he was getting ratty).  We discussed the day and both agreed we had no choice (SPOTTED 1: Him saw John Malkovich in a red phone box outside the pub) and with decision made (good job, I’d already signed the consent forms, although I couldn’t read what I’d signed), my tour guide and unreliable narrator left me at a barrier, caught me when I fell off the tube and let me walk in the rain through Green Park and the Mall (SPOTTED 2: the royal cavalcade , which Him informed me contained the Queen and Meghan arguing).  The walk helped no end: I needed head space away from the boards of, no idea why, an influx of french tourists.

What next?  D- Day is also Brexit day.  So, on the 29th I’m to have a procedure at St Thomas’ Hospital in London.  Although decided and booked, I lurch between elation and genuine panic.  Then yesterday, Little E had her party and sleepover.  And again my cheerleaders came out in force.  I couldn’t see a bloody thing and I could feel the panic bubbling up inside, but they were there.  Unshakeable support and love.  And I knew that even if things went even more horribly wrong, that at least I would still be surrounded by beautiful people who I love dearly. 

Do I get my life back?  Will we leave Europe without a deal?  Will life ever be the same after the 29th March? Time to get my game on.

And only I could have my operation opposite the Houses of Parliament on the biggest day in politics for many years! 

Useful links: 

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

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

http://www.retinasociety.org/

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

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s