Freedom

Hello there, I realise it’s been a while.

About a year in fact.

The reason it’s been so long?  We’ve been getting on with life; lovely, normal, reassuringly boring life.

With the exception of a stress related seizure in January, Jake’s health has been bordering on rude and his recovery has been steady; steadily improving in every possible way.

This ceaselessly amazing progress touches every part of our lives and is, for the most part, a source of unremitting joy.

Let me give you some examples.

He travelled up to London on the train last week…on his own! I dropped him at the station and SIL met him at the other end, but still, on his own!

He is also now confident (and capable) enough to stay home alone overnight unsupported, even taking responsibility for ministering to our ever expanding, furry zoo.

The most remarkable shift is in his mind-set; a couple of months ago we received the renewal paperwork for Jake’s disabled badge, something that just a few months ago was an essential tool in supporting Jake to access life outside of our home.  Today? Today it has expired because he has decided that he no longer wants to think of himself as disabled and anyway, he’s hardly using his walking stick now so doesn’t feel he needs the badge anymore!  Extraordinary.

Those of you who have travelled some of this journey with us will appreciate how jaw droppingly astounding all of this is. (Droppingly – I do so like to make up new words; I get it from my Mum, she’s at master level and should be revered).

The downside of this increasing independence and insight for Jake is the gut wrenching sense of isolation and loneliness he now feels as the drama subsides, people move on with their lives and no longer have time. This, according to those in the know, is also a common stage along the well-travelled brain injury journey. You can’t imagine his disappointment at not being the exception to this rule.

For me, this new sense of independence has meant that I also have a great deal more freedom; freedom to work (although I could do with a more regular flow if you know anyone in need of a copy writer); freedom to have a full social life; make genuine personal choices and, dangerously, freedom to think.

The freedom to think is tricky and not all it’s cracked up to be.  The freedom to think has made room for self-doubt and a growing realisation that I’m not needed so much anymore. Having been a committed, ferocious warrior wife for so long, I suddenly find myself lacking purpose. The freedom to think feels like teetering over the precipice, wondering if anyone would really notice if I fell. I’m not so good at heights.

What does all this mean? It means its tipping point time (again).  If the last four years have taught me anything it’s this; tipping points are magical, terrifying, wonderful, unsettling things. They challenge and compel you to do, well, something. I have (tautology warning) absolutely and completely no idea what that something is, but I expect it will show itself soon.

Our wedding: the sequel

Here we are, back in New York after 5 years, three of which have been fairly interesting!

For those of you not that familiar with our story, let me share a quick overview.

5 years ago Jake and I travelled from the UK to New York to get married, in Central Park.  I can't really remember why we chose to do it this way, just that once the thought appeared, it was a decision that made itself.  And what a great decision!  It was a magical day and a memorable holiday, both in New York and then California where we ended our trip with a blissful, schedule-free, 10 day meander up the Pacific Coast Highway.

Fast forward two years and 15 days to the 26th October 2011, the day that everything changed; the day Jake was knocked off his bike by a careless driver and sustained a severe brain injury.

The effects of that injury have been pretty comprehensive and devastating, but one of the hardest (and I suspect weirdest) changes for Jake has been the damage to his long and short term memory (see previous blog: remember this).  

This meant he didn't remember most of our relationship, my name, our home, our cat and, heartbreakingly, our wedding.

If you follow this blog you'll know that Jake has made a truly extraordinary, against all the odds recovery.  He, and therefore we, is still challenged everyday by a range of complex deficits, but there is no doubt that we have been very, very lucky.

So, what else could we do to celebrate and embrace this luck on our fifth wedding anniversary? Yep, we're going to do it all again, 2:30pm tomorrow, back in Central Park, in the boat landing by Bow Bridge.  We're going to the same restaurant to celebrate after (www.monpetitcafe.com - can't recommend it enough) and wonderfully our wedding party has almost doubled since Our Wedding: the Original.  Honestly, I can't quite believe we're here.  As SIL tweeted this morning; small miracles.

Tomorrow is an opportunity to draw a line under the last three years and look forward to a different but happy future, full of opportunities. Whatever you're doing tomorrow please think of us and smile; wonderful things really can emerge out of all the crap stuff that happens in life, you just have to choose to look for the silver linings!

Caught in the embers

Apologies if you come to this blog for a shot of positivity, but here's the thing; I'm depressed.

I'm lucky that my depression is related to the stress and trauma of the last three years and isn't the lifelong malaise that some battle.  I'm hoping this means I can conquer it.

How have I found myself in this land of sadness and confusion?  One of the best things about brain injury is that I have been lucky to connect with many men and women in the same position as me, caring for, supporting, cheerleading, providing therapy to and loving someone with a brain injury.  The shared tales of my contemporaries mean that I know I'm not alone in my current state of depression; it is part of being a warrior wife / husband / partner / son /daughter / sibling.

A common theme seems to be that the mental strength of the one doing the supporting depletes in direct correlation with the recovery and progress of the one with the buggered brain.  As the one we love slowly rises like a phoenix from the flames of their injury, we find ourselves sitting amongst the fading embers, covered in ash and wondering how the hell we got there.

For the last three years I have, quite rightly, put my life on pause.  I have embraced my warrior wife role and all focus has been on building an effective rehab team and creating an environment to give Jake the best possible chance to make the best possible recovery in the context of his complex, devastating injury.  I am proud of this and what we have achieved.  My gladiator husband has seized this opportunity and defied all the odds.  I don't doubt he will continue to do so, I'm just a bit worried about how useful I can be to him at the moment.  I don't really know who I am anymore and what my purpose or worth is.

Useless, worthless, purposeless; that's how I'm feeling right now and that alone tells me I'm not where I should be, out of focus, out of alignment with Charlie at her best.

I don't like this version of Charlie very much.  She drinks too much, overreacts, makes dubious choices, says and does selfish stuff and generally adds little value to anything.

Clearly I need to do something about this.  Firstly I'm going to up my happy pills again.  I had been reducing them, but the reality is I that I still need them at the moment.  I am imagining the sharp intake of disapproving breath from some of my readers; if that's you I would ask you to take a little time to do a little research and find a little empathy. 

One in four people will experience some kind of mental health problem in the course of a year (http://www.mentalhealth.org.uk/help-information/mental-health-statistics/). Antidepressants are a crucial tool in managing clinical depression and work by increasing levels of a group of chemicals in the brain called neurotransmitters; they help you to manage the extremes of your emotions so that you can cope.  If you have a sore eye you might get some eye drops, but you'd let it heal on it's own; however, if you have impaired sight you wear glasses to correct this and enable you to function normally. If your mood is low because you've had a bad week then you might have a night out with good friends and probably feel a lot better, but if it is chronically or clinically low then you take antidepressants to correct this and enable you to function normally.  You should feel no more ashamed of taking antidepressants than wearing glasses. 

I do know that I have a responsibility to not just rely on these tablets though and I am also exercising more (yoga helps immensely) and have had some excellent counselling with a neuropsychologist.

The much anticipated 'Wedding: the Sequel' in New York next week followed by a second honeymoon in Antigua will undoubtedly help too.  Our brain injury won't go away though, so I shall continue to ask for help, keep looking for my worth and purpose and endeavour to grasp hold of Pheonix Jake's tail feathers, hopefully shaking off the embers and ash as we go.

Restoring the balance

I realise I may have been a tad absent...four months can be described as a 'tad', right?  There are many reasons for this, but mainly just getting on with life. 

A few things have happened in the last month to make me think it may be time to share again.  The first was a conversation with a friend. Well, I say a conversation. It was more of a whine on my part, a whine about how people were making all sorts of assumptions about what our lives were like now and some irritatingly flippant comments about how cushy it is.  The friend pointed out that as I only ever post the good stuff on Facebook and have stopped writing the blog, its impossible for anyone to see the balance and understand the reality.

The second is possibly the most shocking demonstration of malice and cruelty I have ever witnessed.  From very early on in our brain injury journey I connected with a fabulous young man on Twitter.  He was on his own journey to recovery and his willingness to share and endless positivity kept me sane in some very dark times.  Over the last few days there have been increasingly worrying updates from his family, culminating in the horrific news that he passed away the night before last.  I was heartbroken.  This meant so many different things in the context of our own journey that I felt so much more than grief for my friend.  I felt a suffocating mix of shock, grief, an aching empathy for his family and gut wrenching fear for my Jake.  How could someone who had been so strong and done so well suddenly get a new bleed and die?  What did this mean for Jake? 

The answer? He didn't.  His twitter account was hacked and someone with no heart or conscience, but a great deal of time on their hands had painstakingly gone through his old tweets to construct a completely believable, fact laden fabrication.  I am at a complete loss as to why someone would do this?  What on earth could be their objective?  What sick need can this have fed?  Can you imagine his family's confusion and then horror when they finally regained control of the account today and read the hundreds of messages of condolence and support?  Yesterday I cried, today I REALLY want to hurt someone!

What this has given me (aside from a strong homicidal urge) is a bit of a kick up the arse generally.  My amazing Twitter friend is still alive and well (hurrah) and there is SO much good in our life.  If I'm going to help others to understand our reality then I really need to stop whining and meet them in the middle; I need to share more of the tough stuff and I need to appreciate the good stuff more. 

So, I am going to try to motivate myself to share one of the tough bits and at least one of the good bits each week.  Here goes!

Today has been a bit tough because I have felt emotionally battered (and hungover) and really needed Jake to be the sympathetic, supportive grown up.  This is not a natural state for someone with frontal lobe damage and he just wanted to remind me that his back hurts and tell me that he was hungry!  Probably doesn't sound like much, but it can be totally soul destroying and wholly dissatisfying; it's really hard to indulge in self-pity when you know the other person has no control over their lack of empathy and is actually doing an amazing job in the context of their injury...boo hoo for me!

Today is exciting because four weeks today we will renew our vows in Central Park, New York, where we married 5 years ago.  Jake is well enough to make and fully engage with the trip and we have the resources and the support of family and friends to make it truly memorable.  Which is good because Jake can't remember the first time and because I get to buy another dress!

Next week will be good because my yoga class starts up again after the Summer break.  You've gotta love a bit of down face dog!

Lucky me

Two years, five months and nine days ago Jake was hit by a car cycling to work.  The driver wasn't paying attention, failed to give way and pulled onto the roundabout into Jake's path.  The consequences of this moment of inattention have been devastating, far reaching and our lives will never, ever be the same.  I have woken each morning after that day fearfully wondering what our future will hold.

It took 14 months to get a criminal conviction and yesterday saw the conclusion of the civil case with an approval hearing at the Royal Courts of Justice; essentially a rubber stamping of the settlement agreed in December.

To be 100% clear; settlements of this kind are designed to meet the ongoing care, therapy and day to days needs of the injured victim to attempt to give them some quality of life that reflects life before the injury.  We have not won the lottery folks.

That said, this morning I feel very, very lucky and am pleased to say that I slept, undisturbed through the night; a very rare thing indeed.

I say I feel lucky because I am very aware that things could have been so very, very different.  I say I feel lucky for two reasons (you'll notice I say 'I'; I don't recommend suggesting to Jake that he is lucky).

Firstly, I am lucky because of all the people and families living with a brain injury for whom a settlement of this kind has never been an option. The Headway website states that there are at least 1 million people in the UK living with the long term effects of brain injury. The majority of these are most likely to be surviving on benefits against an uncertain backdrop of sweeping changes to the benefits system.

Secondly, I am lucky because of the continuing and mistifyingly awesome improvements that Jake continues to make long after the collective accepted wisdom confidently states it should have slowed or even stopped. His psychologist told me this week that she would put no limits on what he could achieve. Ha!

So this morning I awoke not fearfully, but hopefully wondering what the future will hold; how lucky is that?

Not dead...just resting

Sorry...I know it's been a while, but there you go.

As you can imagine, a great many things have happened since I last posted on 3rd January.  So here's a quick run down:

Firstly, we FINALLY have a date for the approval hearing.  I am reliably informed that this is usually a wait of around 6 weeks after a successful Joint Settlement Meeting. The first date we got was scheduled for SEVEN MONTHS after this and, after the not inconsiderate efforts of the lovely Ben from Serious Law, this gap has been reduced (very slightly) and we have a new date of early April, a mere four months after the JSM.  Ho hum, mustn't grumble (though you know I will!)

The incredibly annoying, whilst at the same time utterly adorable, Bonnie Bonxie Boo continues to madden and melt in equal measure, although she is showing promising signs of improving and may yet escape the glue factory.  She's also HUGE and getting bigger every day.

Jake's fabulous PA Keeley very rudely had her baby 4.5 weeks early (I know, anyone would think it was all about her) and then the other PA left under a bit of a cloud, so there was a slightly fraught period where we had no-one.  We have a new PA now who is just the right side of unbalanced to fit perfectly and we have a new member of the team starting next month... and so the panic subsides again for a while!  Since you ask, Keeley and David had the most ridiculously beautiful little boy called Archie whom I plot to kidnap on a daily basis.  Fortunately she has promised to return and stay in touch in the meantime, so it may be that I get sufficient Archie snuggles to resist the kidnapping urges.

In other news I am now self employed!  Bloody scary after 13.5 years as part of the Blue Sky team, but liberating and exciting at the same time.  I'm hoping they will use me on a freelance basis, but if you know anyone looking for some commercial writing let me know!

The best news of all is the continued and (wonderfully) baffling improvement in Jake.  Many issues still and will always remain, but his dogged resilience and persistence, together with his brain having not got the memo about significant recovery only taking place in the first 12 - 18 months, means that everyday he stuns us with new small, but definite gains.  A great example seems to be his prospective memory (remembering to perform intended actions in the future, or simply, remembering to remember), which has just suddenly decided that, after a 2+ year absence, retirement is a bit dull, so it's coming back to work.  How f*#king wonderfully bizarre is that?!?!?!

I am pleased to say that he is also resurrecting the Imp of Doom project (notice I said 'he' and not 'I') and terrified me today whilst surfing car spares sites with the words 'what's paypal?'.  Oh yes, I can hear you laughing now, but it won't be so funny when the lorries start arriving!

The reality is, that this renewed enthusiasm is such an incredibly hopeful and exciting sign that it's hard to exaggerate its significance.  It has led me back to the Imp Club forum where Jake is known as 'Zippy' (no, I don't know either) where I noticed the following sub heading under his login name; '66 Imp "something"...not dead just resting...

How weirdly appropriate is that?

Gifts

Today I shall take down the Christmas decorations and start to sort through the mountain of gifts that Jake and I received.

I always find sorting through the gifts a bit tricky; the rarely spoken reality in most households is that not every gift makes it. Ours fall into three groups;

1. Ooh, that's lovely / useful!

2. It's nice, but I'm not sure what I'm going to do with it...I'll stick it in that cupboard for now.

3. Oh...err...better start a charity shop bag.

I'm sorry if this seems ungrateful, but despite having moved into a much bigger house this year, we still seem to have way too much stuff. So if it falls into group 3 it has to go so we don't end up on that programme 'Hoarders'. I know, you're shocked...you thought I was such a nice person.

I have wondered in the past if it wouldn't be entirely practical to have a Christmas gift swap shop party in January, but this seems fraught with danger in case you forget who bought what and include a gift given to you by a sensitive guest!

The real trick of course is to not unconsciously communicate this sorting process whilst actually receiving the gift. One of the outcomes of frontal lobe damage is a lack of empathy and self-awareness and I am forever grateful that the impact of this is minimal for Jake; he is still really good at pretending to like group 3 gifts!

At this stage I should point out that the vast majority of our gifts are 'group 1' gifts and we are extremely grateful for the thoughtfulness and generosity of our friends and family. Thinking about this did make me reflect on the 'gifts' of brain injury though, and I was surprised at how many group 1 gifts there are. At first glance it can feel like they are all group 3, so I thought I would share some of the group 1 gifts that I am grateful for.

• I am so much closer to both my own and Jake's family and I genuinely believe that this closeness would not have developed without BI.
• As prophesised in all the books, many friends have become less present, but we have made some wonderful new friends who understand and are completely comfortable with our lives now.
• I have been forced to get off life’s travelator and rethink ‘the plan’.  This has allowed me to look at my life objectively and has opened up new opportunities and possibilities.
• We both have a heightened sense of perspective and appreciation for what we still have.

The best gift of all is the depth and power of love that now defines our relationship and colours every part of my life in a way I could never have imagined.  It is like we have cheated time and have the feelings of a lifetime together…but with a lifetime still to share them.  Now that’s definitely a group 1 gift.

Lucky

Reading this morning's news of Michael Schumacher's developing brain injury sent chills through me; it took me back to those awful first few days and weeks in ICU, waiting to hear something, anything that would offer hope.  I can't stop thinking about his wife and family and the terror and uncertainty they are facing today.

It has also made me reflect on how far we have come and how incredibly lucky we are in the context of life after a severe brain injury.  And really we are very, very lucky.

A couple of weeks ago we had a joint settlement meeting with the insurers of the driver who hit Jake and, aside from some contractual bits and bobs we have hopefully reached an agreement that will allow us to get on with our lives.  All being well we go to court in February and then we can put what has been a deeply unpleasant legal process behind us.  I am not blind to the fact that many people in our situation face an uncertain financial future on top of the daily challenges a severe brain injury brings, so in this, we are certainly lucky.


We are also lucky to have a new addition to the Korving family. Bonnie Bonx is a 12 week old black Labrador; she is completely adorable, which is a very good thing, as she is also unspeakably naughty and it is only her general gorgeousness that saves her!

This Christmas was so wonderful, particularly in contrast to two years ago, when I spent Christmas day alone, sitting by Jake's bed in intensive care. This year was just as it should be, with presents, family, food and plenty of laughter.  Boxing day saw us back in St Albans celebrating Jake's Mum's 80th Birthday with his family, another wonderful day.  We are so lucky to have two such supportive and caring families.

But most of all, we are lucky to have a future together that, in spite of all that has happened, is filled with choices and possibilities and this is what I wish for Michael Schumacher and all brain injury survivors and their families.  Hope goes up eventually so long as you remember that not all luck is chance, as Thomas Jefferson said  “I'm a greater believer in luck, and I find the harder I work the more I have of it".  Despite having a mountain to climb Jake works hard every single day...now that's lucky!

Sun, sea and sense

I realise that this next statement may make me unpopular, but I'm in Anitgua.  Sorry.

I've never been to a Caribbean Island before and I can report it's absolutely and completely beautiful.  In fact the word that springs to mind is fecund; it's so abundant, lush, fertile.  There is a wonderful sense of community and I think this is because, although the economy is driven by tourism, where my friend lives there are lot of expats and so everyone, Antiguan or otherwise, just rubs along together.  The wonderful, mellow rhythm is reflects the nature of the people and instantly puts you at ease, although I have had some interesting propositions, including a very generous offer to impregnate me, but I've never felt uncomfortable or unsafe, in fact I have really enjoyed being able to slip into banter with complete strangers; it's all very good food for the soul.

You'll notice I haven't mentioned Jake.  This is because he is still at home in Dorset; I have come to visit friends on my own to take a break, get some perspective and recharge my severely drained batteries.  Jake has his (and my) favourite PA staying with him and a host of friends and family to entertain him.  I have spoken to him most days via Skype and he is thoroughly enjoying himself and all the attention.

I am so grateful to my friends Vicky, Dion and Mikey for allowing me to descend on them and their new home (yes of course I'd have visited them if they lived somewhere less exotic....honest).  They have real lives to live and I'm not sure they realise the magnitude of this kindness and the impact it has had on my sanity and well being.

The ugly truth is that the last two years have been horrendous but I am finally able to stand back and REALLY see all that we have faced and achieved.  What I also see is that, through necessity, we have created a kind of co-dependency; Jake has needed me and I have needed him to need me. In the short term there was no choice, this was how we had to live.  But now, well, now the other ugly truth is that this co-dependency has morphed into something unhelpful and unhealthy.  It is stopping both of us from learning who we are now, finding a sense of ourselves and working out what the hell we want to do with the rest of lives.  We have no chance of having a great marriage if we can't work out who we are as individuals...and I really believe we can have and deserve a great marriage.

So, what this week away has taught me is that we can do this.  We can survive apart and that this will make the times we are together better.

As the aforementioned favourite PA shared recently; "he's more cooperative when you're not here Charlie", I'm guessing we're not the only husband and wife this applies to!

Two years on...imagine that

Today is the two year anniversary of Jake's survival against all the odds; sometimes it feels like a blink of an eye, sometimes it feels like a lifetime.

When I think about some of the drama, terror and bleak prognosis of the early days it seems extraordinary that we are where we are today (today will be a pyjama day followed by dinner at a favourite pub down on the Quay to celebrate, since you ask).

I thought that this milestone would be a good time to share what life is like now.

From the outside in I imagine our life looks pretty good in relative terms; we have a lovely new home, a civil claim that seems to be reaching a successful conclusion and the resources to get Jake the support he needs to continue to defy those early bleak predictions for his recovery.

On the inside life is challenging, complex and beset by a raft of what my leadership development colleagues would describe as 'wicked problems'.

The devil is in the detail you see; yes, Jake is mobile, doubly continent, eating a normal diet, communicating (to a degree) and able to access a wide range of activities.  We go out, laugh often and have each other. So on the surface it all looks pretty good right? 

Wrong.  Imagine for a moment, if you can, that you are terrified of anything new and your short term memory deficits mean that most experiences feel new, even if you only did them last week.  Then imagine that your confidence and self esteem are on the floor.  Then imagine that the bit of your brain where the ability to motivate yourself is damaged.  So far, so tricky.

Then, imagine that you have been supported  to capture and access your memories of successful past experiences, which helps you to overcome your lack of confidence and to motivate you to actually want to do something...and then imagine that the part of your brain that enables you to initiate, that is to actually get started, is also damaged and despite everything you hit a new wall. Add to this difficulties in managing your emotions and the behaviour they trigger and the complete and utter exhaustion you experience after even the simplest of tasks.

Then imagine that both your understanding and expression of language is so severely impaired that you can't properly express your fear, frustration and humiliation or understand much of the reassurance or support those around are trying to give you. 

Then imagine that you are a 43 year old man who is only just beginning to understand that he has a brain injury, that life will never, ever be the same and for whom each day is a mountain to climb, even if all he has to do is get up and dressed.

To quote Winston Churchill, "It is a riddle, wrapped in a mystery, inside an enigma".

So yes, from the inside things are tough...and yet...and yet, two years is such a short time in brain injury recovery terms.  We have a new psychologist who is working with us both and has already had a huge impact after just two visits.  There are many strategies and work arounds that we have yet to explore that could help us to start to unpick some of these problems.  We are getting a puppy (very exciting...assuming you're not one of our cats of course!) who will hopefully be a one dog motivation and purpose machine.  We are starting to make meaningful connections with people in the same predicament locally which gives us both a sense of not being in it alone. 
We went on holiday recently with SIL, Jake's best friend and his wife and a long time family friend which was a massive success and gives me real hope for future trips (I'm not sure I'll ever be able to thank them all enough for giving up their precious holiday time, leaving families and loved ones and making what felt like the impossible real).  So there is definitely still plenty of opportunity for hope to continue to go up.


If I could ask for one thing at this moment it would be for us to see more of Jake's pre-injury friends; every book out there about brain injury highlights this as an issue and we do understand that there are very good reasons why this happens.  When Jake was in hospital his friends were amazing, but in reality I benefited more from that than Jake and it is now when he is wrestling with his identity and feeling lost that he really needs you.  Please don't feel pressured, just give it some thought and know that there is an open invitation anytime.

830 days in and in many ways we are incredibly lucky. Jake continues to be gladiatorial, inspirational and brave.  His courage and stoicism takes my breathe away and I love him more every day.

It has become a routine for us to lie in the dark each night talking about what has happened as Jake works it through, grieves for what he has lost and comes to terms with his future.  Last night my extraordinary man moved me to tears yet again by declaring 'I can do it...I'm going to win'.

Imagine that!

Looking back

A quick update to start us off; we are finally in the new Korving Towers and, although we had a couple of unsettled weeks, it now feels like home with the extra space making an immediate and positive impact on general sanity levels.  The furry idiots are still establishing boundaries with the neighbours' cats and there are some hilarious games of cat chess in the garden often involving some very dramatic growling but very few actual fights!

The NHS review meeting went well and we have been granted a further 3 months funding taking us up to Christmas which will mean an incredible 18 months rehabilitation funding on top of the 8 months in an acute setting; we've definitely had our money's worth from Jake's national insurance contributions!  This ties in with a settlement meeting for the civil case in December, so who knows what the New Year will bring; I'm working on the basis that all will be well and that 2014 will be the year when we start to get our lives back on track together with a real sense of what that will look like.

That's all in the future though and this week has been more about looking back.  As part of the litigation process Jake and I have to go through endless expert witness sessions.  These are deeply unpleasant, often lengthy yet necessary interviews and assessments that force you to face the darkest aspects of what has happened.  This is particularly painful for my boy as he is only just becoming aware of how fundamentally his life has changed; we work very hard at adapting to and making the absolute best of our current situation and these meetings cruelly undermine those efforts.

On Thursday afternoon we travelled up to Wimbledon for an expert witness meeting with a Neuro Psychiatrist and it was pretty much the worst one so far. We emerged from his office at 8:45pm dazed, exhausted and laughing with hysteria and incredulity at a truly bizarre and often upsetting 3.5 hour experience.  Thankfully our friends Andy & Fiona were there to feed us pizza nd beer and help us to laugh about it. 

What this journey to Wimbledon did give us was a great excuse to go back to St George's where Jake worked, where they saved his life (repeatedly) and where he spent the first three months after the accident.

It was a bit weird to be honest.  I had imagined it so many times in my head; the triumphant return, the joy, amazement and pride. The reality was a bit of an anticlimax; we arranged to meet the team at 11am but they didn't show up until 11:35am after several calls and pages.  I felt dreadful because I realised that this visit was more for my benefit than for Jake's; it was awkward and upsetting and, although it was good to see some of the people that held me together in those early months and for them to see how well Jake is doing, it wasn't such a great experience for him.

What was a good experience for him was meeting up with four of his colleagues in the cafe afterwards.  Jake has a range of issues with his memory, including finding it hard to put people, events and places together.  This means that when I told him about the people we were going to meet he didn't know who I meant, but the look on his face when they walked into the cafe was absolutely brilliant.  "My God, it's YOU!" he declared, beaming from ear to ear.  The next hour flew by and I realised that this was the return Jake needed.  These people were his friends, they gave context to where we were and allowed him to feel like Jake the radiographer, rather than Jake the brain injured patient. 

We will definitely go back, but it will be to see Jake's colleagues and friends and won't be a visit burdened by so much expectation.

Friday night took us to a friend's 50th Birthday party in Jake's hometown which meant catching up with more old friends but also meant, on top of all Thursday and Friday's activity, Jake is completely and utterly exhausted and has been sleeping since yesterday afternoon.  I'm not expecting him to emerge from his fatigue laden slumber until tomorrow and the furry idiots are delighted by an opportunity to take advantage of this combination of Jake's warm body and the duvet for a whole day!

Tired but hopeful

Wide awake again in the middle of the night so I thought I'd take the opportunity to update you on how things are going in brain injury land.

Works on the new Korving Towers are progressing well (it's looking fabulous!) and we are moving in next Monday.  New tenants have been found for the current Korving Towers and everything seems to be slotting into place, including the all important transportation of the Imp of Doom.

Moving house is stressful at the best of times and this is most certainly not the best of times.  To counter this I am doing everything possible to minimise the impact including having a full packing service from the removals company, which sounds great in practice, but there is something really unsettling about a bunch of hairy arsed blokes packing up all your belongings; I'll probably pack my own knickers!

Jake has moments of calm clarity when he sees that this move is a very good thing for all concerned.  Sadly these are the exception and he is mainly frightened by the prospect of change.

Due to the nature of his injuries Jake struggles with change both emotionally and cognitively.  It has taken 6 months of a carefully managed and structured errorless learning approach to get him to the stage where he is almost self sufficient in his morning routine, needing only minimal prompting and assistance to get up, showered and dressed.  When we move to the new Korving Towers, despite trying to mitigate the impact by reflecting as much as possible the decor and layout of our current home, Jake will lose some of that learning because the visual and procedural cues will have changed.  He will also have to relearn where different rooms are and be confident about where he should go when and what for.  Sounds simple? Think again, it's taken months for him to get to that stage where we are now. It's not surprising that he's on edge.

This means a rocky road ahead as it comes at the same time as a sudden increase in insight and therefore understanding of the magnitude and impact of what has happened to him.  The worst aspect of this is his belief that I'd be better off without him and his attempts to push me away.  He is REALLY good at pushing my buttons and this usually ends in an upsetting exchange quickly followed by a rush of regret and panic from Jake.  This is very distressing for him and he needs loads of TLC, patience and understanding right now, so if you're his friend and in the area do pop in and see him, it would definitely give him a boost.

The good news is that he's achieved so much at the current KT and so we know that with the right support and a bit of time he will do the same at the new KT. The extra space will make a massive difference to us both as will the week in Gran Canaria with good friends and family at the end of September, so its short term pain for what will hopefully be long term gain and better times ahead.

Next week also sees the full review meeting to assess how Jake's NHS funded intensive rehab programme is going and where we go from here, so there will be lots to update in my next blog.  Hopefully I'll have slept before then!

40 sucks

This might sound pathetic, but I am feeling very sorry for myself right at this moment.

You see it's my 40th Birthday this weekend. Aside from the obvious feelings of impending old age and the sagging of, well, everything, I am sad because my husband isn't interested.
With some cajoling and Starbucks related bribes he was encouraged to go out with his PA to buy me some gifts, but he wouldn't have done this if I hadn't arranged it. I also arranged for him to make me a cake which, sadly, he couldn't really be arsed to do. I had to contact his deputy to suggest that it was reasonable to assume Jake might have bought me a special gift and could he liaise with Jake's sister...and then I had to ask her to remind him. I told Jake that lots of people were coming to celebrate with us tomorrow and he said 'I might come out for a bit'.

This might all sound petty and you might be thinking I'm ungrateful because I still have a Jake and he is better than anyone expected. But it's my 40th Birthday and I'm having to sort out my own catering, cake, bunting, invitations, etc. etc. etc. because my husband can't do most of it and it wouldn't occur to him to do what he could. Frankly this is heart breaking and makes me feel like shit. Sorry and all that, but there it is.


Having to provide endless love, support and care to someone who, most of the time treats you like staff is in a weird way made worse because he doesn't realise he's doing it and really doesn't want to hurt me, because then I can't even be angry at him. What a stupid bloody situation.

I am also sad because my husband isn't really interested in anything. Since his shunt revision we have started to see what was really going on and clearly his shunt had been failing for some time. A lot of this has been very positive with small but definite improvements in most areas. Unfortunately, some things have got worse and the extent of his frontal lobe damage is worse than initially thought. He is thoughtless and rude one moment and remorseful the next. His motivation has evaporated and so he spends all day in bed, doing the bare minimum and immediately losing his temper if you try to get him to do something, even if it's something you know he'll really enjoy. His perseveration has got much, much worse and sometimes he gets so stuck on a subject or thought you can see his confusion and frustration escalating as he obsesses, powerless to stop. This never ends well.

I completely realise that this is horrible for Jake, but it is also utterly exhausting and soul destroying to have to answer the same question again and again for hours, knowing that, due to his language and cognitive issues, he is probably unable to hear or focus on the answer and will continue to obsess and continue to ask.

This apathy, lack of caring and indifference terrifies me. It is so alien to the Jake I married and fills me with dread for the future.  So right at this moment my considered opinion is that 40 sucks.

Hope goes all over the place

So, to catch you up on all that has happened since my last post.  If you remember, Jake had just had his shunt revision operation following a shockingly bad first hand experience of the ineffective communication and organisation rife some parts of the NHS.

Well, I'm afraid things didn't improve. If you possibly can, avoid Southampton Hospital. Seriously.

At no point after his operation did a Dr of any kind come to tell us how it had gone and what we should expect.  Jake was finally moved to a medical ward in to a bed with someone elses name and dietary requirements above it until I arrived and pointed it out.  He was then held captive on this ward, where no one had read his notes (again) for three days.  This meant that, despite me telling them every time I came in and the sign I put above his bed spelling it out in capitals, they kept calling him by the wrong name that no one ever calls him (it's complicated but Jake is actually Jason). They alarmed his bed to stop him from getting up and walking about and then gave him anti-coagulant injections in his stomach every day because he was immobile; madness.  And all this because they were fixed on sending him back to Poole 'rehab' rather than home as he was 'still very confused, aphasic and unsteady'...you know, those chronic conditions that are normal for Jake which they would have known if they'd just READ THE BLOODY NOTES. 

I called the Poole brain injury registrar Dr King (who is lovely) first thing on Monday morning and agreed with her that there was no reason for Jake to come back to Poole hospital and, so long as she could get the OK from the registrar at Southampton, Jake could be discharged straight home with me, not least because he was going insane being trapped in a bed all day. This would have been great if the registrar at Southampton could be bothered to return Dr King's repeated calls. He couldn't.

As the advocate of someone like Jake you sometimes have to make yourself a massive pain in the arse and this was one of those times.  I arrived at the hospital at 3pm and announced, in my most friendly but definitely not to be trifled with voice, that I would need to see the registrar immediately as, having had the OK from Jake's Consultant, I was planning on taking him home that afternoon and I would really rather prefer to do it with their blessing.  Ha ha ha, apparently that's the magic phrase to make the Dr appear.  Not in person of course; like the undead, Drs at Southampton cannot be seen in daylight and can only communicate through their earthly underlings (the nursing staff).  Anyway, approval was gained and there was much running around getting discharge papers printed and signed.  The only wrinkle being the physio who wasn't initially happy to OK the discharge as Jake was still 'very unsteady and drifting to the right'; good work Sherlock, this is because he has ataxia and right hand side neglect which you'd have know if you'd just READ THE BLOODY NOTES.

So, finally sprung from Southampton and safely back with his much missed furry idiots, Jake carried on, oblivious that we were all holding our breath waiting to see what impact the shunt revision would have.

The road to recovery in brain injury land is never a smooth one and the next couple weeks saw Jake battle a stomach bug, infected wound site, ingrown toenail removal, a resurgence of the constant vomiting issue and the reality of what happened 20 months ago finally dawning on him.  Worst of all, after 8 months seizure free, a full tonic clonic seizure last Tuesday.

And yet, in the midst of all this discomfort, illness, confusion and fear, my extraordinary husband has retained his sense of humour and, more excitingly, regained a level of recovery not seen since Christmas.  It seems the shunt has been failing for some time!  On top of that there are signs of even further improvements in his language and understanding, mobility and independence.  Bloody brilliant.

Not wanting to take the wind out of anyone's sails, but it's important to manage expectations and it is worth pointing out that, although amazing, all these things are relative.  Our Jake is still a very damaged man.  He is profoundly dyspraxic, aphasic, ataxic and dysphagic as well as suffering from memory and executive functioning issues. That said, he never gives up and has already exceeded the expectations of every medical and rehab professional he has encountered and life is so much better than we were led to believe it would be.

So hope continues to lead us on it's merry dance; it's a good job we like dancing...ish.

The fear

You know that moment when you've been trying to prise the lid off something and suddenly it pops off and the contents go everywhere? Well, that's what happened on Wednesday morning.

After literally weeks of banging on that things were 'not quite right' and sending countless increasingly 'direct' emails, we got a call from Jake's consultant at 9am to say "I've reviewed the latest CT scan with a Consultant Neuro Surgeon, this needs to be dealt with today, there is an ambulance on the way". Gulp.

First thought; good. Second thought; oh God, here we go again. Third thought; how the hell am I going to explain this to Jake through the fog of aphasia and hydrocephalus? Fourth thought; I should get out of this towel before the ambulance arrives!

Thankfully the ever calm and generally amazing Keeley (Jake's primary carer) was there and took us both in hand with her usual air of quiet competence and we arrived at the emergency admissions ward at Poole Hospital at 10:00am. Jake was now 'nil by mouth' and the registrar assured us that we would soon be transferred to Southampton Hospital for emergency Neuro surgery and we were looking at this all happening "in hours rather than days". All very scary...all very exciting. Getting the shunt fixed meant getting Jake back on track.

Another CT scan was quickly done and sent over to Southampton and then we waited...until 6pm when the ambulance finally arrived. On arrival we were admitted to the Neuro transitional unit and waited for Jake to be admitted and assessed.

At this point it is important to stress that I think the NHS is utterly amazing. The support, care, expertise, investment and understanding we have received over the last 19 months has been truly amazing.

Southampton, however, did not fill me with confidence. It took 90 minutes for someone to come and check on Jake who, as sister in law said, is an emergency admission and could have been dead for all they knew. 

A 9pm we were finally seen by the registrar who was a very pleasant chap who seemed to know his stuff, which was all very comforting for the first ten minutes, up to the point when he said "has he had a brain injury before?", quickly followed by "what's his name?". He knew NOTHING about Jake's severe brain injury and clearly thought he was dealing with a straight forward case of organic hydrocephalus. Having put him right and filled him in on the last 19 months SIL and I did our best not to communicate our belief that he was as capable as a mummified slug and off he went to read the notes...yes, that's right, he hadn't read the notes.

Back he trotted with the news that Jake was now "first on tomorrow's emergency list" and Jake was finally allowed to eat and drink something at 9:45pm after 13 hours nil by mouth.

Meeting for breakfast in the hotel the next morning SIL and I were feeling positive that Jake would soon be in theatre and all would be well. I called the ward at 8:30am to see if he'd gone down yet (having learnt the hard way, SIL and I do our best to ignore the whole 'sitting outside of a theatre watching the minutes crawl by' scenario and had planned to get there after he had been moved to recovery). You can imagine my confusion when I was told that 'he's not on the emergency list anymore, they'll get to him today if they have time". 

Hang on, how can he be rushed in as an emergency case with the consultant Neuro surgeon insisting it needed to be dealt with immediately and then suddenly no longer be that urgent despite worsening symptoms? This sounded VERY wrong to me, so out came the warrior wife armour and SIL and I planned our strategy for 'helping them to reconsider'. Cutting a long, distressing and often fraught story short, we got the consultants to communicate and we were back on track for surgery on Thursday.

Of course, during this time a very confused and frightened Jake was lying in a strange ward, not allowed to eat or drink for two days and not really understanding why he was here. He was amazing and coped unbelievably well, of course. 

Finally, at 6pm yesterday, I held my Jake's hand as the anaesthetist sent him off to sleep and he was wheeled off into theatre.  SIL and I then had the joy of what is absolutely the worst bit, the waiting. Much coffee and tea is consumed and much banal small talk is half heartedly made.

At 7:45pm he was taken to recovery and at 8:45pm we got to go and see him. He was very groggy and uncomfortable but seemed to know us, so we reluctantly headed back to the hotel to eat...and drink. 

Emboldened by too much wine I broke my own rule and called the ward at 10pm, 'just to check'. What I hadn't expected to hear was "he's fine, sitting up in bed having a cup of coffee, would you like to speak to him?". Err...hell yes! 

Gladiator Jake had done it again "is that my wife?...hello wife" said he, "bloody hell" said I!

So this morning we start again with hope going up and hopefully I'll be able to get he chorus of Lilly Allen's 'The Fear' out of my brain and replace it with something a little more appropriate, any suggestions?

Still here

I realise that it has been over 3 weeks since my last blog post.

Many of you have contacted me recently to check I'm OK, so I'm sorry if I've been a bit under the radar and thank you for all being so lovely.

When I started to write this blog its main purpose was to enable me to keep people informed at a time when I was too overwhelmed to talk.  Over time it became a welcome outlet for the dizzying range of emotions and challenges that having a brain injured husband brings.

Recently it has started to feel as though it doesn't belong to me anymore, but rather is a service I provide to others.  I get that this is inevitable to a degree, but I got to the stage that I felt that I HAD to write it, rather than wanting to; it became a chore.

Add to that the roller coaster of events recently, both good and bad and I'm afraid I withdrew, battened down the hatches and waited to feel ready to write again.

I'm going to give it a go today and I suppose the best thing I can do in this blog is to update you on the last few weeks.

It all started to go awry on the 1st May with the news that a major London newspaper had picked up Jake's story from court papers and were going to run it the next day; did we want to comment?  This is absolutely the last thing we wanted and our solicitor stepped in and we hoped that it would run and then go away.  Which largely it has, with the minor blip of a bloody cheeky journalist wandering into our back garden to see if I wanted to comment as 'it's all in the public domain now Mrs K'.  Snotty cow, off she went, with a flea in her ear!

That weekend we went to stay with friends where there was some much needed silliness.  It also saw us take Jake to a charity in Bushy Park that provides a wide range of companion bikes and trikes to see what would happen.  I went without expectation, as the nature of Jake's accident and his lack of confidence meant that we didn't know how he would react.  Well, he surprised us all by hopping on a trike and peddling off, albeit very ungainly and slowly.  Bloody brilliant!  You'll never guess what we're getting him for his Birthday next week?

There have also been some concerns about Jake's health which has seen trips to A&E, finding him dazed, confused and bruised on the bathroom floor in the middle of the night and the regression of both physical and cognitive abilities that culminated in a CT scan and other tests.  The upshot is that his VP shunt has an intermittent fault which means that he is experiencing occasional recurrence of the hydrocephalus that kept him in a minimally conscious state for the first few months of his recovery.  This will require the replacement of some or all of the shunt and although I am glad we have an answer and a plan, I am gutted that he will need another surgical procedure.

Other notable events have included a bout of man flu (Jake's not mine!) and a failed attempt to take Jake off the anti-emetics.  As a friend who saw the results first hand commented, it was like "a Roman banquet at half time".  Life in brain injury land is certainly never boring!

That said, there is much to look forward to, with contracts due to exchange on the new Korving Towers next week and Jake's Birthday BBQ on Sunday; even the weather forecast seems to be on-side.

That's it for now; I don't know when I will blog again, but I'm bound to at some point, so bear with me!

A perfect idiot

In response to my last post Missing the Fight a friend on the Headway Healthunlocked site (who has a unique perspective as a TBI survivor) expressed concern that I am "empathising to the point where you are becoming Jake".

This stopped me in my tracks; it was like I'd been walking around with my skirt tucked in my knickers all day and someone finally pointed it out.

I then read back through my last few posts and realised I have, in fact, had them tucked in there for weeks! (Don't worry, this is just a metaphor, I have been changing my pants!)

The thing about me is that I don't like to do anything unless I can do it really well and often I'll choose to avoid doing something all together if I don't think I can do that.  Basically I'm a selective perfectionist! 

Let me share with you my approach to doing something really well; first you explore the thing in detail to understand the size and shape of it. Then you go out to your network to get insight and advice from someone who is an expert. Then you choose whether to jump in and give it everything you've got, reflecting, reviewing and perfecting your approach as you go.

This works really well with a work project or making your parents' anniversary cake, but you don't get to choose when brain injury comes into your life, it is not something you can avoid, you just have to get on with it and I have been busily trying to be the best wife of a severely brain injured man in the world...ever. 

Which is beyond stupid; it is such a slippery,complex and imprecise subject.  An afternoon on Google and a 30 minute call with a brain surgeon won't help me to be the best in this scenario.  Reading the top three TBI rehab books on Amazon won't enable me to know how to 'fix' Jake.  I can't be perfect at this and I'm not helping either of us by trying.

The Headway area manager recently said to me "Jake is completely fine, he has plenty of support and all his needs are being met; what about you and yours?"

Of course, I have no idea how to do any of this.

Oh, how incredibly and annoyingly perceptive these two women are.

Missing the fight

I haven't blogged for a while because I was letting my reaction to some recent news sink in, feeling a bit confused and waiting to feel good about it.  Last week saw some long awaited news and steps forward in our civil case.  That woman's insurers have finally accepted primary liability and are making an interim payment that will enable us to buy a bigger home.

So why do I feel so deflated?

I know that some reading this will be wondering what my problem is and rightly so.  I get it; we are unbelievably lucky to be able to claim compensation and there are many, many people in our position who don't have that opportunity.

The problem is the wood and the fact that I can now see it for the trees.  The last 18 months have been all about the fight; Jake's fight to live, the fight to get him the right treatment and funding, the fight to get justice, the fight to secure our financial future and, frankly, the fight to stay sane.

Today Jake is back at home, he has a phenomenal rehab package in place through the NHS, we have found a property that can accommodate our changed needs, we have a justice of sorts and I know we have a fabulous legal team who will make sure we are OK in the future.  I don't have to fight anymore.

There is no doubt that this is a good thing and I am certainly battle weary and in need of a rest, but I miss the fight.  The fight is absorbing, a distraction.  Deep in the fury and adrenaline of battle you don't have to face the reality of right now and right now I am scared.

I am scared because I am having to face the future and even though I have known it would be tough, that knowledge was an abstract, amorphous thing that I was vaguely aware of.  Now I am no longer in the fight reality has been brought into sharp relief.

This breaks my heart, because if it is hard for me, I cannot imagine what it is like for my Jake.

Last night I woke at around midnight to find Jake trying to get comfortable in soaking wet bedding having had a horrendous night sweat.  With fresh sheets on the bed and a reassured Jake we both went back to sleep.  An hour later Jake got up to go to the loo which wakes me as I need to put the light on for him as he is sight impaired and so unsteady on his feet.  A few seconds later I realised that Jake was sleep walking again and going to the toilet in the hallway, waking up and realising as he was doing it.  Can you imagine how mortified he was?  Now imagine feeling like that and not being able to express it.  Imagine that you are so dyspraxic that you are unable to help clean it up and will have to sit on the edge of the bed watching whilst your wife cleans up after you have already watched her get up in the night to change the bedding.  Imagine your frontal lobe damage means you can't manage or control your feelings of shame and upset.  Now imagine you don't really understand why you are no longer a capable, reliable husband and find yourself helpless, standing in your own urine unable to do anything about it.  My imagination certainly didn't let me go back to sleep.

This makes me want to weep.  I am SO angry that this has happened to him, to us.  I want to sweep him up and transport him away from this reality.  I want to take all of his pain and confusion away and would gladly swap places with him in a heartbeat.

So you see, I miss the fight, it was keeping my heart whole.

Good people

In a very weird way brain injury is both isolating and inclusive.  All of the books tell you that after the initial acute phase people who have been very involved will become less present, often finding if difficult to know how to interact with the new person the survivor inevitably becomes.  One hates to be a cliche, but that has definitely happened to us.  That's not a dig by the way, it's just the way it is.

The compensation for this is the new network of virtual friends I have found through social networking.  Both Twitter and the Headway health unlocked site have brought me into contact with good people who understand, would never judge and give me endless support and encouragement.

I think my favourite thing about the very good people on the Headway forum is the utter lack of bullshit; whether it is because of frontal lobe damage or just simply the honesty of people who have experienced true trauma, I know that what I read is real, unvarnished and truthful; even if that means sometimes it is a little blunt!  I can count on one hand the number of people in my non-virtual life who are that genuine; wouldn't be great if everyone was?  Apart from Jake obviously, I could REALLY do without some of his frontal lobe damage induced bluntness!

This life is far from easy, but the comradeship and acceptance of my virtual friends makes it easier to cope.

This life also makes you look at problems a little more creatively; when Jake sustained his severe injury 17 months ago he wasn't expected to survive and no one could have predicted that last weekend he would stand up next to his great friend Mike as his best man.  With such a complex mix of cognitive and speech deficits the best man speech was always going to be a bit tricky, but with the help of my sister in law's colleague (and very good people) Andy Davies, we still managed to make everyone cry with this! The best man

Here's hoping

Someone recently asked me if I was 'OK' because I seemed a 'bit up and down at the moment'.  They were completely genuine in their question and I know it came from a place of caring.

Their choice of words made me smile inwardly in a sort of ironic way as the title of this blog is no accident; every stage of this journey has taken us up and down, like a twisted game of snakes and ladders.

In the early phases you career between the hope of a flickered eyelid and the terror of the 'when to withdraw treatment' conversations.  As time moves on you are buffeted between the joy of small victories like the first few sips of  thickened water and the pain of accepting what is lost.  This develops into a focus on how much rather than if at all and still you undulate along the ups and downs, grateful to still be on the journey. 

In a weird 'if I knew then what I know now' way the more acute, in-patient phase is not so bad; you have tangible, concrete things to focus on and a place to spend your hope.  You can clearly chart the improvements and have no real responsibility for what happens in that environment.  If it's not working, then 'they're' doing something wrong.  The highs and lows are more immediate and visceral, but at least you can take comfort from knowing hope is likely to go up again soon.

No, the worst ups and downs are the ones that are so imperceptible as to hardly register.  As progress slows and you begin to establish the new 'normal', everyday feels like an unremitting, featureless landscape and you find yourself compensating by experiencing every tiny thing, whether good or bad, to it's extreme, a bit like voluntary bi-polar.  Trying to force the hope to do something, anything.

Add to this the constant feeling of failure you have from not being able to help, understand, mend it, or do the right thing in any situation and you start to feel as though you are truly running on empty.  I have believed that I reached this point many times over the last 17 months only to be able to thankfully scrape some more reserves off the bottom of the barrel, I am sure I will do so again and be rewarded by an upward tilt soon.

So, if I seem a bit up and down it is because that is the nature of brain injury whatever the stage; hope goes up...hope goes down.