Latest blog from: hopegoesupanddown.blogspot.com - a record of the hope, terror and unknown future faced when the one you love most in the world suffers a brain injury.
As we have travelled along this strange brain injury journey, which has swung from a hurtle to a crawl and back again, I have learnt that you need to be really, really adaptable. The problem with this is that I, frankly, am not.
I like structure and predictability; processes make me shiver in anticipation and I get no greater pleasure than from creating a task list or spreadsheet; I plan and prepare for everything in minute detail. For example, I have bought and wrapped my Christmas presents, the decorations are up, the cards are written and sent and the Tesco's delivery is booked for the 22nd. I have even planned this blog (I know, hard to believe).
Life in brain injury land doesn't work like that. Life in brain injury land is like trying to quickly navigate the length of Oxford Street, blindfolded on Christmas Eve and tied to a Japanese tourist who wants to go in Selfridges...again. You can't plan it or predict how it will work out. Anything could happen, none of the other shoppers are interested in helping you get there and you'd better hope you don't get trampled on or trapped in the middle of Oxford Circus.
So, on I go, bouncing off the shoppers, lampposts and beggars half heartedly dressed as Father Christmas, hoping for the best and keeping my fingers crossed that we reach Marble Arch in one piece.
The latest problem I am wrestling with on this bonkers, unpredictable journey is how well Jake is doing. Ha ha ha - I bet you read that twice!
Yes, I did say Jake's progress is a proving to be a problem for me. I have got so used to Jake needing help. Until recently he's needed help to; stand, walk, sit, eat, choose, talk, read, write, understand, cope, remember, open and close things, lift and lower things, tidy up, go to bed, get up, get dressed, shower, shave etc. etc. etc. He still needs support with most of these things, but it is more guidance and prompting than actual help and it seems to have happened when I wasn't looking!
This means I keep getting it wrong, very very very wrong. In fact, I keep falling into the patronise trap. I don't mean to, in fact I 'mean well'...which is rubbish really. What makes it worse is that I get seriously aggravated when someone else does this to him, particularly those who should know better; Dr's, therapists, nurses....and, err, well, me.
Jake is understandably irritated by this and it causes untold angst. The man is a saint most of the time, but even the most understanding and forgiving soul gets pissed off if you repeatedly patronise them.
So, this is my pledge; I will haul myself out of the patronise trap and will try to remember the extraordinarily intelligent, resilient and determined man who CAN do things for himself, rather than the brain injury deficits and frustrations (not just his!) that trip me up and lead to me fussing and mothering.
If you see or hear me doing this you have permission to kick me in the shins.
Find out more about our journey at hopegoesupanddown.blogspot.com