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.

Moving on up

Jake and I have just returned from a weekend of luxury and relaxation at a local spa hotel.  It was fabulously indulgent, the staff were incredible and I can honestly say that a change of environment and a removal of stress has left us both feeling more relaxed than in a very, very long time.  So much so that we've booked to go again in June!

We arrived home this morning to the icing on the cake; a message to say that our offer has been accepted on a new house.

The current Korving Towers was the perfect forever home when we moved here in August 2011; it is small but perfectly formed and had everything we needed; a big bedroom, office, two reception rooms, a lovely new kitchen, sunny south-west facing garden, a massive garage for the imp of doom, really close to my sister and her family in a good area on a quiet road and close to local amenities (and a nice pub!).  If things had gone to plan I can honestly say we would have stayed here until they carried us off.

Sadly things haven't gone to plan and since Jake came home it has become increasingly obvious that the current KT is just too small.  I am finding this particularly difficult as I literally have nowhere to go; I work from home and so for most of the day you can find me, Jake and a carer bumping into each other.  Add to that the various therapists and related visitors and the house suddenly feels very small indeed.  Jake's supported and carefully managed morning routine means that access to our bedroom and one bathroom is restricted until at least 10:00am and his need to rest regularly means that sometimes I have little or no choice as to where I go in my own home.

In fact I often find myself still in my PJ's at 10:30am with the door to our room closed as Jake has gone back to sleep!

The journey to finding a new property has been tricky as we have needed to balance getting a property that reflects our original needs, the new needs our situation adds and a budget that both sides can accept.  The new Korving Towers feels perfect; with much more space, in an area we are happy to live in and still within a reasonable distance from my sister (and therefore the wine!).

There was a near miss that was judged as 'over provision' by the other side (easy for them to say, it's not going to be their home!), which has led to us being in the crappy position of having to go to court for the interim payment we'll need to purchase a new property.  All I can do is trust that our legal team will manage this side of things for us and hopefully we'll be in the new Korving Towers before the end of the Summer.

Grief

I don’t know why, but after 555 days suddenly I can’t breathe.  I feel smothered by anger, sadness, confusion, responsibility and fatigue.

All I can think about is what is lost; all the experiences we were going to share, the pride I know I would have felt watching him be an endlessly amazing father and radiographer, the chance to be a mother, my career, my social life, my future.

I spend all my time trying not to show Jake how broken I feel, crying when he’s not there and closing myself off pretending to be strong, positive and cheerful when he is.  He’s got a brain injury, but he’s not stupid; he knows.

I’m sitting here now on the sofa in the lounge with hot tears splashing on my laptop, trying to bring myself back under control before I climb into bed with my Jake. 

I know this is grief, I know this is normal and necessary, I know it will pass.

But it hurts, in a way I can’t even begin to explain.  I am burning at the centre of my soul and I want to close my eyes and sleep forever so I don’t have to feel it anymore.

But then my beautiful man would be all alone and that would be so much worse.

So tomorrow is day 556 and I will get up and start again.  Because I know this is grief and I know it will pass.

Remember this

Our wedding in New York

Our honeymoon in California

Our beautiful new home

Our roles

Our rules

Our plans

Our secrets

Your degree

Your second career

Your colleagues

Your words

Your age

Your triumphs, trials, decisions and set-backs

My flaws

My quirks

My fears

My dreams

...my name

These memories may be lost to you my love, but they are just moments in time and I promise you we will make more.

So, if you remember nothing else remember this; my name doesn't matter because I will love you every day, forever; you are truly amazing and we have literally millions of new moments ahead together with which to make new, wonderful memories.

Lets start today.

A plea to the professionals

I don't want this post to be misunderstood, so I'd like to start by stating my intent; I genuinely believe that anyone who chooses to work in a field where there are such extraordinary personal and emotional stakes does so because they are fundamentally good people who want to do the right thing.  The majority of our journey has been characterised by the provision of exceptional care, empathy, thoughtfulness and professionalism by these people...some of it has not. 

The sad thing is that it is the little things that are overlooked, not considered or ignored that often have the most devastating impact and, I suspect, often without the offender being aware of this impact.  That is what this post is about and it is intended as a positive call to action.  So please read it in that context.

Cutting to the chase, YOUR PROCESS IS RUINING MY LIFE!

Jake and I are just two people, we're not particularly exceptional for anything apart from what happened at 7:25am on the 26th October 2011.  We don't have access to limitless resources or medical knowledge; we're just doing what we can in a truly shitty situation.

Thankfully we are optimists and so are both attempting to make the best of it.  This is difficult to sustain though when each corner we turn seems to lead us to a big, ugly and unresponsive process.

When your world has shifted so fundamentally that you are having to re imagine every plan, expectation and dream, the thoughtless proclamations of 'that's the process', 'it's not our policy', 'we have to wait for A to talk to B, who needs to check with C who is on holiday for the next 2 weeks', 'that's not in the guidance' or (a personal favourite), 'that's not my job' are breathtakingly stupid and unhelpful.

Before you go all indignant and defensive on me, I know that these are the facts of your job and probably true in that context, but do you really have to say it that way? Could you choose to look around the process and see the broken person behind it? Could you take the time to really listen and then explain why the process is there, how it will benefit me and what you are going to do to make my experience of the process a bit less painful?

Take a moment to consider where the process came from, who did 'they' have in mind when they designed it?  I'm guessing it was originally meant to help people like us, not defeat us.  If not, why not?

So, a simple plea; next time you're about to take out your process and brandish in the face of someone who is potentially crumbling under the pressure and terror of their situation, please think about why you do what you do, the way you are about to communicate and the impact you're about to have.

Thank you from me and my Jake for reading; we'll keep trying if you will.

Bossy, know it all control freaks

The unvarnished truth is that I am a control freak; I like to be in charge, deciding what will happen next and what everyone should be doing.  So, not just a control freak but also a bossy know it all.  Ha! 

This is bobbins if your husband has a severe brain injury and huge swathes of your life and future are in other people's hands.  You are in control of nothing, know nothing and no one would do what you told them even if you did.

Lying in bed last night feeling completely out of control and worrying about so many different things it would take too long to blog about, I was overwhelmed by the thought of the strain that is currently being placed on our relationship since I broke Jake out of the Student (Doss) House and into the now too small Korving Towers.  We seem to be able to wind each other up in a moment and spend much of our time apologising to, circling or avoiding each other.  As I lay there trying to take back control of this problem with imagined strategies and plans I suddenly realised that this is what I have been trying to do and where I have been going wrong, I have been trying to manage him. 

Jake is, always has been and always will be a bossy, know it all control freak.  Whoever said that opposites attract got it sensationally wrong when it came to me and Jake.  We are freakishly alike (I like to think I look better in heels) and my trying to manage him is stupid, arrogant, NOT my role (there is an army of professionals to support him in his rehab) and will destroy what is a wonderful marriage that I am very proud of.

So, just to recap, at a crucial time when he is trying to take back control of his life, rediscover who he is now and create some form of meaning out of all this, his ignorant wife is being a bossy, know it all control freak (BKIACF).  Who knew I was such a spectacular idiot?

I should know better of course. I work for a very cool company who are like behavioural alchemists; they can transform organisations with entrenched and negative under performing people, cultures and behaviours into positive, performance focused, collectives who make, do and deliver great things in the right way. I'm supposed to know this stuff (I've worked there for 13 years!) and as I lay there trying not to be engulfed by the terrifying enormity of this thing masquerading as my life, I suddenly thought of Dan Pink.  "Dan who?" I hear you ask.  Well, I shall tell you.

Dan Pink is a bit of a genius when it comes to behaviour and he has a very cool theory (supported by lots of research) about motivation. He states that "the secret to high performance and satisfaction at work, at school, and at home is the deeply human need to direct our own lives, to learn and create new things, and to do better by ourselves and our world". This can be distilled into three core elements that drive individual motivation; Purpose, Autonomy and Mastery.

This may all sound a bit fluffy, but I happen to know that it works because I have seen it successfully applied in the work that we do.  If you still need convincing, have a look at the amazing animation that Dan did for RSA which explains not just the theory, but clearly articulates the application, relevance and (for all us left brainers out there) the evidence: Drive - the suprising truth about what motivates us.

OK, OK, I hear you...I'll get to the point; if purpose, autonomy and mastery is what drives our motivation to succeed, then how much of this does Jake have at the moment?

Purpose (the reason we do what we do - provides the context for autonomy and mastery): as I am told is often the way following long term inpatient treatment, Jake has become institutionalised and directionless.  Prior to the accident Jake had purpose coming out of his ears; I think it is fair to say that he is a bit lost at the moment and needs to rediscover what his purpose is in this new world he has been forced to inhabit.

Autonomy (control to be self engaging, interested and managing):  he has someone with him all the time and we're all making decisions and plans on his behalf.  I'm so ashamed of this; I always said we should be going on this rehab journey WITH Jake, not doing it TO him.  He has no autonomy or control...and did I mention that he is naturally a BKIACF? 

Mastery (the desire to get better at something that matters, to continually improve): for me this is where there is a HUGE opportunity.  Jake is a complete and utter perfectionist (and a BKIACF).  He hates doing something that he doesn't buy into or think he can succeed at.  If we can tap into this and break success down to be achievable and meaningful then the concept of mastery could be the key to his taking back control.

The challenge now, of course, is to create an environment, in the unique context of traumatic brain injury, where Jake can safely have purpose, autonomy and mastery without me over-engineering or managing it. 

Which won't be easy, I'm a BKIACF you know!

Room service?

Clearly I don't want to speak too soon, but we're a week in and things seem to be going surprisingly well.  We are both sleeping better and I have been surprised by how easily we have both adjusted.

We now have a care team of four excellent PA's and by the end of next week the physio, speech & language and occupational therapists should all be in place.  Tomorrow Jake goes to his first Headway social meeting (in a pub on Poole Quay, alright for some!) and they have referred him the to pretty much every rehab group available.

He seems more relaxed and confident now than in a very long time and I'm starting to feel like maybe, just maybe I've made the right decision!

This weekend we travelled up to stay with friends in SW London and spent a very happy few hours in a pub we used to frequent, followed by lunch in his favourite Indian restaurant the next day; it's fair to say a good time was had by all.  It really didn't seem to matter that he didn't understand much of what they were saying and vice versa, it all just seemed to click, though I suspect the beer helped.  It made my heart soar to see him having such a great time and doing something so 'normal', whatever that means.

We did, of course overdo it and he spent much of yesterday a victim to his fatigue either asleep or staggering about in a sort of trance, but I know he would agree it was so worth it! 

The only downside to Jake coming home so far is that, having been in hospitals and rehab units for 16 months, he is well and truly institutionalised; this means he expects to be waited on hand and foot like he's in hotel...he is finding the reality a bit of a culture shock!

On the naughty step

I think it is fair to say that I am not that popular in all quarters at the moment.

Having made the decision to give notice to the student house, events came to a head on Monday morning and I brought things forward a bit...to Monday morning!

Essentially I decided not to take Jake back after the weekend, or ever. They say some decisions make themselves, and this certainly feels like one of those times.

Jake's confidence and morale have taken such a hit since Christmas and, together with the overall regression of hard worn improvements since he moved to the student house, I realised that it was crazy to send him back to somewhere that he didn't want to be, that wasn't helping him and that was causing us both so much distress. 

Not a universally welcomed decision, but what else could I do?

Of course, this presents all sorts of complications and I get the impression it’s a decision that is not usually made at such short notice, but there you go (there was a bit of a hairy moment where the possibility of Jake being made to go back was mooted, but fortunately this threat seems to have abated).

We're both 'on holiday' this week (big thank you to my colleagues for their support) and from next week we will need to quickly put in place a care and therapy team, together with a joined up plan so that Jake can get back to rehabilitating and I can get back to working and not being in the way!

Korving Towers is not really big enough for this change, but plans are afoot for a move to a larger property and it will be worth being a bit cramped in the short term to know that Jake is getting the level of support that he needs and deserves. I know I will definitely feel and sleep better having him home.

I joke about being on the naughty step, but it is important to stress that this decision has been made completely out of love for my Jake and the genuine desire to do the right thing for us both for the future. On the surface it may seem like a selfish decision, so I do hope everyone understands.

What a waste

Oh, where to begin?
 
I suppose we begin with the opportunity; Jake is currently benefiting from a window where his brain is still receptive to making new pathways, he is very motivated to continue to improve and we have an excellent funding package through the NHS named patient programme.  So the opportunity is most definitely for hope to go up; it is huge.
 
Currently that opportunity is in the hands of a transitional rehab unit that you will have heard me refer to as the student house.  So, what's the problem? The problem is that they are not maximising that opportunity.
 
The purpose of Jake moving from the rehab hotel to the student house was that it is closer to home and the rehab package would be specifically designed to focus on integration back into our local community and making the successful return home in the Summer.  He would gain the life skills to have some Independence in our home and the confidence and familiarity to access local amenities.  This was very exciting to us all and felt like a real step forward.  Progress.
 
So why are they not maximising this opportunity? Honestly?  I don't think they have the capability or the resources.  Seven weeks in and the life skills gained at the rehab hotel have gone and no progress has been made in accessing the local community.  Don't get me wrong; the staff are warm, caring and supportive, there are lots of internal group activities that they have managed to get Jake to join and enjoy and he has a lovely big room. If we had reached a point where Jake had plateaued and been assessed as needing long term residential care, then the student house would be perfect.  We have not reached that point and what makes it so much worse is the lack of accountability being taken for this failure to deliver against the promises made; never have I experienced such a practised and skillful avoidance strategy!  It's like accountability is something toxic and they don't want to get any on them.
 
This is maddening as I cannot express enough how utterly lucky we are to have this perfect storm of opportunity that so many don't.  I will not see it wasted, you can be sure of that.
 
Yesterday I had the chance to 'express' my feelings face to face (not a terribly 'clean' communication!) to those funding this opportunity.  I felt like I had been truly heard for the first time and in the review meeting with the student house team that followed a very clear plan was drawn up for the next 4 weeks of rehab.  I'm afraid my confidence is not particularly high.
 
So, I suppose that means we end with a question; if the opportunity is currently being  wasted and the student house team can't get their act together, what should we do next?  The answers are complex and pretty daunting and, with the excellent support of Jake's case manager and the Poole NHS brain injury support team I am sure we will find them. 

Courageous choice

There are lots of different types of courage and they're not all about dramatic, reactive acts on a grand scale. Some are quiet acts; tipping points where choices are made with little ceremony, but that require strength, conviction, the ability to dream and not a little nerve. These quiet acts are the kind of courage that require resolution, commitment, faith in those around us and a strong sense of self. 

For me, genuine courage is about the choices we make and how true we are to our values and beliefs in the face of challenge, whatever scale it is on. Clearly I have seen some extraordinary examples of courage on this journey, but out of the three that have struck me the most in the last week, only one has been related to brain injury.

The first is my Sister; a 45 year old, married senior operations manager in the NHS with two teenage boys, who has decided to walk away from a successful 21 year career to go to university to retrain as a clinician. This decision has huge financial implications for them as a family and will require them all to make sacrifices and changes. This decision also provides a fabulous example to those boys and will most certainly transform this woman's future for the better. Amazing.

The second is my Sister in Law; MD of a global PR company who, despite being in a position to walk away having sold her business, is choosing to commit to it in its new form and choosing to have faith that as a wider leadership team, they still have great things to do together. Also amazing.

I find both these women inspiring and am grateful to have them in my life.

The third is Gabby Giffords, who yesterday stood in front of a senate panel to call for greater gun control. What makes this remarkable and an incredible act of courage is that just two years ago Gabby, a democratic member of the US House of Representatives, was shot through the head at point blank range at a public meeting. The bullet travelled diagonally through the left hemisphere of her brain, unsurprisingly causing a severe and life changing injury.

From our own experience of severe left-hemi brain injury I can tell you that what Gabby did yesterday is a breath taking feat and demonstrates that there are truly no limits to what individual determination, a supportive and loving family, together with the genius of TBI medical heroes can achieve. It is not only amazing from the perspective of Gabby's exceptional recovery, but also the emotional and physiological barriers she must have overcome to have found the strength to speak so publically, eloquently and passionately. I cannot tell you how moved I was and how much hope this woman's choice and ability to speak out gives me for our own future. I recommend taking a few moments to watch her speak: Gabrielle Giffords' senate panel address. Utterly amazing.

I am in awe of all these women and their choices; they inspire and motivate me to keep doing the right thing and making the most of every opportunity I am fortunate to have.

I recently came across the following quote that I think sums up the importance of having the courage and the opportunity to choose to change.

"Though no one can go back and make a brand new start, anyone can start from now and make a brand new ending". Carl Bard

Making a brand new ending, that sounds pretty good to me right now.

Whatever choices you make today, whether they are big or small, I wish you courage and many happy new endings.

Once more unto the breach...

Exhausted, irritated, frustrated, bored, disappointed, exasperated, angry, resigned, incredulous...welcome to the world of brain injury rehab.

Each time Jake moves to a new rehab setting we are encouraged by promises of a full, well thought out rehab schedule that will support Jake to continue to move forward on his journey home.  Each time I am very open and clear in expressing the need to deliver against these promises. Each time I allow excitement to creep in as I become infected by the hope and possibilities.

So why is it that each time I find myself having to step in to make these things actually happen?

Yet again, we are over a month into the placement and things aren't happening.  This means that I spend hours writing emails and making calls to the various stakeholders trying to gather the information and evidence to enable me to have yet another 'tough conversation'.

The irony of course, is that I am constantly told that it is vitally important for me to retain my role as Jake's wife and not to become his carer or therapist...seems that rehab manager is OK though!

You find yourself questioning why it is so important for him to be in this residential setting; I feel fairly confident that if I was given the funding, a little guidance and a list of contacts, with the help of Headway I could create an effective rehab plan for Jake from home. 

I am now laughing at the thought of all the interested parties reading this in horror!  I know that making the residential rehab placement work is the better option; but really?  Can you honestly tell me that this is how it's supposed to work?

Whilst I'm having this moan, I am mindful of how lucky we are; on this journey I have come across many brain injury survivors who are isolated and travelling alone without strong advocacy and support.  It is a mine field littered with reactive 'if I really must' health care 'professionals', complicated funding systems, a lack of taking ownership and accountability and post code lotteries.  We are lucky because we have an excellent case manager funded through the civil case, I have made a really good contact at Headway, we have wonderful, supportive families and friends and Jake has me to fight his corner each day.

So, I shall try to remember to be grateful for this, gather all of my resources and go once more unto the breach, dear friends, once more!