Tuesday, 27 November 2012

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.

Tuesday, 20 November 2012

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.

Tuesday, 13 November 2012

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.

Friday, 2 November 2012

Nowhere to hide

You won't be all that surprised to hear that one of the main things that drew Jake and I together was our shared values; I suppose the best description would be that we are both sort of old fashioned liberals.

Fairness, doing the right thing, thoughtfulness, modesty and mutual respect set the tone for our relationship and, having gone through a fairly unhealthy, self-destructive period in my twenties, finding an old fashioned gentleman like Jake was like steering my ship through a raging storm into a safe harbour.

We would often visit other people in their homes and I would find myself thinking 'thank God Jake's not like that' as partners belched their way through a meal, left the bathroom door open when they were relieving themselves or were openly rude or dismissive to their partner. I'm sure some of you are reading this and thinking 'what an old woman, I have no problem with that', but my Dad and Step Dad are both old fashioned gentleman, so it's not that surprising that I would look for this in a partner.

I realise now that I drew our relationship and Jake's respectful, unconditional love around me like a comforting armour that would keep me safe and all those who would intrude or harm me (including myself) at bay.

You can imagine then how challenging I am finding facing alone the completely intrusive, exposing nature of our current situation. In the last week I have had to discuss specifics of our sex life with four different people. Don't get me wrong, I'm not a prude, I just don't feel all that comfortable sharing the intimate mechanics and detail of this most private element of our marriage.

However, this is not the only area of intrusion and exposure; our finances, aspirations, plans for a family, where we will live, how I will work, when we're 'allowed' to be together, how my husband's treatment and rehab is managed, where we can go on our own and pretty much anything else you can think of are all open for scrutiny and comment from, it seems, all and any party that claims or expresses an interest.

This feeling of exposure and being out of control is compounded by the continuing uncertainty of both the criminal and civil cases, where faceless people are making life changing decisions without having even met us.

Ronald Reagan once said "the most terrifying words in the English language are: I'm from the government and I'm here to help".

Well, I know that all these parties, whether official or personal in their connection, have a good intent, genuinely want to help and also that in many cases we need and have sought out that help; but sometimes I feel so exposed and raw that it seems as though nowhere and nothing is private anymore and I can't navigate back to that safe harbour because he is facing his own storm.

At those times I would like them all to bugger off and mind their own business, or at least give a little more thought to their impact!