What a difference a year makes....

Last year we were here:

this year we're not!

 

I wonder what I'll be posting next year?

Wishing you all a VERY Happy Christmas and buckets of peace and joy for 2013.

Bah humbug

This week has seen me rip the bumper off my beautiful car (which means I can't get to see Jake), the toilet become comprehensively blocked (ewww) and my special 'Christmas Cold' gift arrive.  Frankly I am not feeling all that seasonal, despite having adorned Korving Towers with an embarrassment of sparkly, tacky Christmas tat.

In a vain attempt to look on the bright side I can report that the new bumper will mean I lose the only scrape I had on the car, I know a very cunning way of unblocking toilets without having to call someone out and getting the cold out of the way now means I won't be infecting various family members over Christmas.  Oh, and it's given Jake a chance to be supportive which he excels at and which will make him feel good.

Nope, still feel grumpy!

In other news, work on Korving Towers is moving at pace and the plan is to have the majority of the work done before Christmas.  The builders are working incredibly hard and are cheerful, charming and polite, although I imagine the endless supply of tea and biscuits helps.  They are all sporting Santa hats this morning, so I shall get them some mince pies as well!

Jake is all ready for his move to the student house on Thursday (thankfully we were always going to use my sister's car for that!).  We made a cake together at the weekend to say thank you to the team at the rehab hotel and it took me an hour to clean up the kitchen afterwards; he couldn't quite get that you need to keep the electric whisks IN the mixture,  otherwise you pebble dash everything in cake mix!  I think it turned out OK though:

 

The main bit of news I suppose is that I have made a decision about the future.  At the last review meeting it was suggested that Jake could be in residential rehab for up to another 12 months.  You may think this is really selfish, but I have asked his team to work on the basis that it will be 6 months.  Jake and I have only been married 3 years and we have spent a year of it living apart since his accident.  He will still be able to access rehab and therapies during the day, but we both desperately want to be back together and so we are working towards him being back at Korving Towers by the Summer; 20 months after his accident.

Life isn't the same without him and I'm sure my seasonal spirit will return on Christmas Eve when he comes home for four days.

I hope you all have a wonderful Christmas and remember to cherish this time with those you love; you never know what is around the corner.

Ho, Ho....no sorry, can't do it ;o)

the patronise trap

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. 

me, me, me

I am about to be really honest...really, really honest.  Sadly, it's probably just going to sound like a moan but this blog is about sharing the reality of our journey.  So here it is.

In the last 403 days I feel like I have become a non person.  Every part of my life is about someone else.  Every decision made is based on what is best for that person.  I am looked at with suspicion, pity and irritation by health care professionals who seem to think that I should know what I'm doing.  I don't.

I get up on a Sunday morning,  make a cup of tea and shuffle in my PJ's in to the lounge to watch the Andrew Marr show to find that a Health Care Assistant has put Top Gear on...again.  Oh, and they're sat in my spot on the sofa.

I make plans for Christmas dinner with my family which then get debated based on whether Jake will cope by people who will all have lovely, peaceful and private time at their house...HELLO, IT'S MY CHRISTMAS TOO!

I am expected to be able to plan every conversation in advance, anticipating topics and having images available.  News flash - this is not possible.  I am expected to be able to attend any meeting at the drop of a hat and to understand all the medical jargon and options and make sensible decisions.

I can't go where I want for lunch, decide it's a beautiful day for a walk at the beach, sit quietly on my own in a room, pop into Tesco's for some milk or have a lie in.

Recently a Consultant even tried to say it was my fault that Jake's medication hadn't been reviewed.  Seriously, how much are they paying you?!

I have to be a wife, an advocate, a financial manager, a mediator, a housekeeper, a proposal manager (yes, I still have a job). This means I am failing as a friend, sister, daughter, auntie, daughter in law, colleague.

At this point I would like to say that I love my husband more than anyone or anything else in the world.  I couldn't imagine my life without him and not putting him first is absolutely a non choice for me.  That's the easy bit.

I am only human though and, although it probably sounds childish and selfish, I am finding always coming second, whilst being expected to be a constant and devoted advocate and champion, a little difficult.

My switch is always 'on'.  I'm a bit worried that the fuse may blow.

All change again

Yesterday was the quarterly review meeting at the rehab hotel to reflect on the past three months of Jake's rehab and look forward to the next stage of the journey.

It was a full house with all interested parties represented and I really should have anticipated what happened next; I was well and truly 'managed' in this meeting so all of you well meaning folk who have been saying "you must look after yourself if you're going to be there for Jake....yada, yada, yada...blah, blah" will be pleased to hear that I am being bullied into doing so.  That's me told.

As far as news from the meeting goes, in the context of the overall rubbishness of what has happened to my beautiful man, the news is all good. In the words of the ward manager (who is amazing, but is only 26 - I'm so old!) "he's really flying at the moment".

This progress brings bitter sweet news; because he is responding so well to the rehab environment the current forecast is that he'll be in a residential rehab programme for another 6-12 months.  Oh...goody (not).

Alright smarty pants, you can stop shaking your head, I know.  The logical part of me does see that this is amazing news and I'm sure somewhere inside me this logical side is whooping in celebration.  At the moment though it is being drowned out by the part of me that wants my husband home so we can be together again the way we are meant to be.  Why are the right decisions such terribly hard ones?

So, we move forward and it's all change again.  On the 20th December Jake will be moving to a transitional unit that is based less than 8 miles away and smack bang in the middle of a busy town.  The unit itself is more like a shared house than the current place, which we call the Rehab Hotel, but feels more like a halls of residence.  The new place will henceforth be known as the student house, which I am told is what it used to be before the neuro centre bought it.  They describe it as 'supported shared living', but I prefer student house!

The focus for this move will be on transferring what Jake has learnt so far into real life in our local community and this will hopefully be the last stop before home on Jake's journey; I can't tell you how much we would both love to fast forward to that point.

In other news, my amazing husband sent me flowers and chocolates today with a note which read "To my wife Charlie, I know this is hard but I love you very much. From Jake".  According to Sister in Law, who helped him to order them, these are his own words.  Could I be any luckier?

In even more news, two members of the Imp Club came at the weekend and spent hours and hours of their own time welding and grinding to finish the Imp of Doom's body work and all it cost me was lunch!  Lovely people, extraordinary generosity.

Say what?

Firstly, I apologise for any typos in this blog; I have scratched my cornea and so have one working eye and one swollen, gummed up eye.  It's quite a look!

Today's blog, with or without typos, is about words...and frustration...and patience...and forgiveness...and laughter...and love.

When someone suffers a severe brain injury it is easy for those looking in from the outside to assume that it mainly affects the owner of the injured brain.  My experience though is that when your partner suffers a brain injury, it affects every single aspect of your partnership; it changes the shape and nature of that relationship and you'd better hope it's a strong one or it won't survive.

I am lucky that I found my perfect match in Jake, so I know it will survive, but the way our relationship has shifted is extreme and presents endless challenge.  It is not 'his injury' it is 'our injury' and that is the shape of our relationship now.

"Every brain injury is different"; this is something we hear every day and I know there are tens of millions of people across the globe dealing with uniquely and unimaginably changed relationships and lives due to brain injury.  The biggest challenge we continue to face is communication.

It doesn't matter that it is Jake's communication that has changed; communication is a two way process (if it's done right) and without understanding there is no communication.

Jake is suffering from aphasia in both his expression and understanding, which in practice means that he doesn't understand what I'm saying and I don't understand what he's saying.  This is worsened by his lack of insight and how tired or overstimulated he is, but you often don't know that this fatigue has become a problem until it is too late. Add to that the fact that we both absolutely believe we are clearly communicating but can't make ourselves understood and really, does it make any difference whose head is injured?

The outcome for both of us is frustration, resentment, confusion and, more often than not, hurt.  Oh, and guilt; Jake feels guilt because on some level he knows that he has changed and believes it is 'his fault'.  I feel guilt because it is my job to take care of him and help him in his recovery, not snap at him because he has repeated the same nonsensical message for 2 hours without a break. You cannot imagine how stressful this is for both of us; we never used to shout at each other before our injury and I hate that we do it now.

What I can tell you is that when these moments of frustration erupt we always make peace.  This is what what makes us the perfect match and why I know that whatever it's shape, our partnership will survive.  We have kept hold of our patience, forgiveness and love...and we always end up laughing, even if it's slightly hysterical!

With or without our injury I wouldn't swap this relationship for any other.

Introducing Jake: Part One

Greetings my hopeful friends. I trust you are having a good week?

Frankly there are a lots of brain injury related things I could have a moan about that have happened in our world this week, but instead I choose to share with you that a little bit more of the fabulous and rather unique brand of lunacy that characterises my husband continues to show itself each day.  As I write this it occurs to me that if you have only known Jake or our story since the accident, then you won't know what I mean by that.

To be honest, that makes me a bit sad, as you have missed out on knowing a truly awesome man (so far) and so this blog is all about Jake and what makes him the extraordinary person I love most in the world, with or without a brain injury.

Like so many couples these days, Jake and I met through an online dating site (match.com since you ask).  What attracted me to him initially, apart from the foxy photo obviously, was his honesty, intelligence and ability to make fun of himself.  He did try for a while to claim that I contacted him first, but I have proof this is not the case.  He also exaggerated his height a little on his profile, but don't tell him I told you.

When we spoke on the phone for the first time it was for 2 hours and I laughed for the full 120 minutes for he is a spectacularly silly bugger; a critical attribute for any prospective partner in my humble opinion.

As I got to know Jake more deeply I got to know the sensitive, sometimes vulnerable soul that he hides beneath the humour and the 'proper bloke' persona he projects.  Like most men he can occasionally be stupendously thoughtless (sorry chaps, but there it is), but never when it really mattered and I have always known I could count on him to do the right thing; I have always known how important I am to him.

Taking as read his incredible determination, drive and bounce-back-ability that I have written about many times in this blog before, the other significant aspect of Jake's character is that he is a rescuer; an old fashioned, generous, good in a crisis, knight in shining armour and hero.

This is so fundamental to who Jake is it can be seen in every aspect of his pre-TBI life;  nobody in Jake's life ever had to get someone in to fix their computer/car/bike; if you had an emergency or a crisis he would drop everything to be there (I have so many examples of this I could share!); he would spend hours doing unrequested online research for someone if they mentioned they were unsure about an important purchase; and he would (and often did) spend his last few pounds treating someone, even if it meant having no money for his lunch the next day.  This characteristic can also been seen in the complete career change he made in his 30's (did I mention how brave he is?) going back to school to get a degree and become a radiographer where helping people was the thing he loved most about the role. Oh, and if you know of any old, irritable, ugly and violent cats that need a new home, please don't tell Jake about them, otherwise we'll be adopting again!

How terribly hard it must be for him to be the one that needs rescuing now.

So, this is part one; my perspective.  If you are reading this and you knew my Jake before his accident, please share your perspective in the comments box below or send me a (brief!) email and I promise to share this in the next blog.

If you don't know Jake personally yet, I look forward to one day introducing him to you in person. I know you'll love him.