Ambush!

It's been a busy 'ole week in tbi rehab land.

On Thursday the architects came back to draw up final plans for adaptations to Korving Towers and the spec has now been sent out to potential contractors for quotes.  It will soon be time for the house to be covered in dust and the cats to hide in the bottom of the wardrobe again.

Also on Thursday the independent Case Manager and the NHS case manager both came to the house to stage an intervention; but more on that later.

On Friday Jake came home in my car for the first time, having only ever travelled that distance in the back of a taxi before.  Mum came to help in case she was needed and she sat in the back behind Jake; I hadn't thought this through all that well as Jake's wheelchair is massive and our four seater cabriolet is not, which meant Mum was pinned in by the frame in a manner that was probably not all that safe!  It went really well though and the journey back (minus a squashed parent) was very peaceful.

Friday was also the one year anniversary of Jake's accident.  It may sound strange but I chose not to view this as a sad day, but rather a day worth celebrating; the day that Jake survived against all the odds.  I'd much rather focus on the next 12 months.

On Saturday a consultant neurologist with a special interest in brain injury and neurological rehabilitation came to see us and he spent 3 hours going over the case history and assessing Jake for our civil case. He was really lovely and spent a lot of time looking at the detail to make sure he had the full picture.  He also spent a lot of time listening to me and sharing his thoughts on how Jake's rehab may progress.  They say that every rule needs an exception; well he appears to be the exceptional consultant that proves the rule that you have to have the bits of your brain that deal with empathy and humility removed when you become a consultant.

On Sunday Richard and Karen from the Imp Club came to meet Jake and look at the car.  He was so happy and when we took them to see the car his aphasia practically disappeared.  I am really hopeful that this project will have a significant impact on his rehab; it certainly will form a key element of 'Project Jake's Joy'.  I'll tell you more about that in another blog. 

Yesterday was fairly standard aside from the fact that Jake has started to get to grips with texting and commenting on Facebook. As with his spoken word the aphasia is still affecting the words, but the understanding and meaning is definitely coming through. In response to my "hello my love" text I received "hey darling".  Bloody fantastic!

Today I have found a cleaner. This has nothing to do with tbi rehab, I just wanted to gloat.
So, back to the Case Manager duo's ambush last Thursday.  We were due to meet with the weekend care providers for a routine review at 1:30pm, but the CM's wanted to meet an hour earlier.  Well, the minute they walked through the door their tension and discomfort was palpable (am I really that scary?).  We sat down in the lounge and there was much shuffling of papers and throat clearing.  I finally begged them to say whatever it was that they were there to say and they finally told me; Jake is on the move again.

When I first heard this my overwhelming emotion was exasperation; he's only just got settled again since the last disastrously handled move and moving him again so soon seemed unthinkable.  Fortunately I'm a very reasonable and adult individual (ahem) so I allowed them to explain. 

The rehab focus is shifting to ensure Jake is ready to come home next year and that this return home is successful. So in December, assuming all stakeholders are in agreement, we will move from the Rehab Hotel to the student house (no really, that's exactly how it feels, right down to the labels on people's food cupboards!).  The student house is a transitional living unit which is part of a larger Neuro Care Centre. The rationale behind this move is that the student house is less than 8 miles from home.

This will enable Jake to start connecting with the local Poole community, visiting the local gym / pool and accessing Headway rehab groups (swimming, gardening etc.), It will give us more flexibility in terms of coming home, so it feels less rigid and the occupational therapists can work with Jake in our home during the week which will make the rehab more meaningful.

Having got over the initial shock this feels like a good thing. Let's face it, it will be nice to not have to do 8 hours travelling back and forth from the rehab hotel every week!

As weeks go, it's been a corker!

Disinhibited joy

Sometimes the advice we get from the professionals makes perfect sense and we dutifully take it on board and do our best to reflect it in our actions.  Sometimes however I stick my fingers in my ears and sing 'la, la, la, I can't hear you'!

Let me give you an example; in the main, the phases of recovery that Jake is experiencing are painful, heartbreaking and frightening.  There is a great deal of hope, but the process is bobbins.

This week, however, we have a phase that I personally think is brilliant.  Put your hands together folks and give a warm welcome to traumatic brain injury induced disinhibition!

I know it doesn't sound all that good and if it was more extreme or the episodes more prolonged it would become a problem.  I am assured though that at this point they believe Jake's is par for the course and 'normal' in the context of this stage of recovery.

Basically it's a bit like being stoned or a very happy drunk; everything is hilarious and he sees absurdity in the strangest things.  Yesterday we were lying on his bed crying with unrestrained and uncontrolled laughter over his inability to find the right word; not something that's been all that amusing up to this point.

It has been explained to me that this extreme behaviour and the flip side which often sees him getting stuck in negative thoughts, doesn't reflect his actual levels of emotion.  In other words if he is outwardly REALLY happy or sad, he's not actually feeling that good or bad, he just doesn't have the appropriate behavioural filters to manage it at the moment (let's be honest, we all know people like that!).

Yesterday his Speech and Language Therapist advised me not to engage or join in with this as my validating it will exacerbate this false behaviour.  Well, I am totally bought into this advice from the perspective of the negative thoughts.  But...but...really?  It's so fantastic to see him so completely and unreservedly joyful; it's like a happiness atom bomb has gone off inside him and all the bright, white glee is exploding outwards and bathing us both in some long overdue joy.

Surely this eruption of happiness is good for him?  It felt pretty good to me! 

I'm sure I will take this advice on board eventually, but maybe I'll pretend I haven't heard it just for this weekend.

I leave you with an Imp of Doom update: some lovely people from the Imp Club are coming to Korving Towers THIS weekend to get an idea of what's needed to help us achieve our anniversary meet goal.  One more reason to be happy!

Where have all the heroes gone?

Watching the news today I was struck by how easily our heroes fall; at the start of the year Jimmy Savile was a fondly remembered fund raising hero, Lance Armstrong was an inspiring sporting hero and survivor and John Terry was a respected national role model.

These are people about whom we are bombarded with carefully crafted PR and that we build pedestals for and so it is perhaps not that surprising when some of them slip off; maybe we need to start looking for our heroes in different places? 

Well, I have had a look in my own life and have found literally hundreds, but there are two in particular I thought I would share with you.

The first is a man who has been part of mine and Jake's journey for the last 6 months, but who we are saying goodbye to today (hopefully only professionally). Sebastian started driving Jake when he was still in Boot Camp and when he couldn't walk, communicate or control his emotions.  Back then we quickly came to rely on Sebastian to be sensitive, caring, thoughtful and never patronising.  As time has moved on he has become more of a friend to us both and Jake is always pleased to see him, if not always pleased that he's being taken back to the Rehab Hotel!  Seeing them shake hands and exchange small talk (even if it made no sense!) has been a really good benchmark of how things have moved on.  From my perspective Sebastian has been flexible and understanding when things have had to change last minute, he has been empathetic and supportive when I have failed to hold it together, known when silence is the right thing and he has cheered me up with his quirky humour when I have been struggling to see the funny side.  He even tolerated my endless fiddling with the radio!

It is people like Sebastian that make us feel safe and in control and, although it is exciting to be finally at the stage where I can drive Jake myself, we will no doubt miss him.

Thank you Sebastian.

The second is not one person, it is an organisation; The Imp Club.  For those of you that don't know, Jake has a 44 year old Hillman Imp that he has had for 23 years.  Next year is the 50th anniversary of the Imp and Jake was determined to finally get the 'Imp of Doom' as he calls it, fully restored in time for the anniversary club meet next Summer.

When we moved to our new home just 2 months before his accident, Jake finally had a garage and for the first time since he left his parents many years ago, his Imp, most of the spares he needed and his tools were all in one place.  He was all set. And then life happened.

Well, this weekend for the first time since his accident Jake got excited about the car again.  The challenge of course is that Jake had a wide range of physical and cognitive impairments that may or may not improve and so starting work on his beloved Imp is not something he can do alone.

All the medical experts agree that having an interest to focus on that he is passionate about will significantly help his recovery and I am desperate to help him to get the Imp to the anniversary meet.

Sadly I have neither the knowledge or capability to do this, so I appealed to the club for help and my timing could not have been better as yesterday was their AGM and Jake was an agenda item.

They got in touch to find out how they can help, are reinstating Jake's club membership on our behalf, are making me an associate member and clearly just want to do whatever they can without any expectations in return.  I have also been contacted by members of the Imp Club forum with offers of help and support.  These heroes don't know me from Adam and have only ever had contact with Jake on-line before, but they are keen to get involved and have restored my faith in human kind.  Getting Jake and the Imp of Doom to the anniversary meet would be truly wonderful and the Imp Club heroes have made me feel that this may now be possible.

I wonder what heroes you already have in your life and who is waiting in the wings to step up and be heroic when you need them?

a little bit overwhelmed

The problem with this frankly awful experience is that, despite continuing progress and the small, uplifting triumphs that thankfully still come, it is too huge and unpredictable a challenge to stay on top of.  Everyday I get up, dust myself off and start again and everyday I feel so utterly helpless and inadequate; my beautiful Jake is having such a tough time at the moment and I would give anything to take it all away and would swap places with him in a heartbeat. I know it's pointless to feel this way, but I suppose what I am saying is ITS NOT BLOODY FAIR! 

Imagine being a highly intelligent, successful and well respected man, finally settled in your personal life, starting to achieve great things in a new career that you switched to in your 30's, having already excelled in a previous career and looking forward to hopefully soon becoming a Dad.  You are known for your quick wit and impressive vocabulary, people often turn to you for help, you can turn your hand to pretty much anything and you enjoy setting yourself and achieving stretching challenges like cycling from Lands End to John O' Groats unsupported...twice.

Now imagine slowly becoming aware that something is very, very wrong. You no longer have control of your mind, emotions or body.  You can't find the words to express yourself anymore, and you can't understand what is being said to you.  You have permanent double vision, you topple over if you try to stand or walk too quickly and you have gone from being strong and able, to needing help with pretty much everything.  You get frightened, angry, upset and confused without really knowing why.  You get stuck doing the simplest things and have to be guided and supported to achieve the most basic and personal tasks. You have to surrender your fate to others and feel so completely out of control it is crushing.  Then someone tells you that this is because you have been in an accident which has left you with a severe brain injury, it happened nearly a year ago and no one can say how much you will recover, only that it will be a life long journey.

Everything that defined you has either changed or gone. The rug you were standing on has been well and truly pulled out.

I don't know about you, but I'm not sure I would survive this experience.  Not my Jake though.  He is undoubtedly struggling; he's not a machine, but his ability to pick himself up and keep on trying in the face of such a huge mountain to climb is both inspiring and heartbreaking.  He is so hard on himself if he gets it wrong or can't do something (which happens a lot) that my role has become one of cheerleader, coach, counsellor and, sometimes, just listener.

I try to be strong for him, but I get so angry and overwhelmed by how bloody unfair all this is and I certainly don't think I would be able to find the strength to use humour to manage my anxiety and be self effacing when I repeatedly make the same mistake. My Jake does though.

He is terrified but determined, frustrated but focused, devastated but resolute.

If all of the pride, love and respect I feel for my husband escaped from within me it would envelop the world and Felix Baumgartner would have been able to see it from his balloon!

I love you Jake.

My theory of relativity

It's funny how other people respond to your crisis when it's a whopper; they are very careful around you, they watch what they say and they play down the stuff they have happening in their own lives because, as they often say to me "it's nothing compared to what's going on for you and Jake".

Well I have a theory about this. Don't worry, there's no actual physics, I'm incapable. My theory is that shit happens (I know, I'm a genius).  Wait, don't go, there's more!  Shit happens to all of us and it is completely relative to the experiences we have had up to that point.

So just to recap; shit is relative. 

Let me explain.  Before Jake's accident my life experiences were pretty tame; crisis was missing a deadline at work, a house purchase falling through, or having a disagreement with someone I cared about.  So my shit spectrum was quite limited.  This didn't invalidate the feelings of anger, frustration, fear or heartache I felt; in the sphere of my experience they were extreme.  Jake's accident increased my shit spectrum; this doesn't change how I felt about those old experiences, it just means my perspective on them has shifted. It certainly doesn't mean I don't recognise or care about your crises.

We all have the resources to deal with what we have in front of us right now and if it feels like a crisis to us then that's OK, so long as we dig into those resources, don't let it overwhelm us and learn from it, hopefully increasing our shit spectrum as we go.

So next time you are about to play down the things that feel huge to you in the context of your shit spectrum; don't.  Shit is relative and yours is just as valid and important as mine, it's just different. 

And if your shit spectrum is limited then be grateful because it means that life has been kind to you so far.

I'm expecting the funding for my PHD any day now!

bitter sweet progress

First things first; I am pleased to report that the weekend went really well.  So well in fact that Jake is going to come home for 48 hours every weekend, rather than every other. 

We went to the paper shop, watched films, went for hot chocolate at the beach and generally had a lovely time.  Jake has a cold and really hammed it up like he had the black death on Sunday morning to try and get out of going back to the hospital, but as I said to him, "aren't you the lucky one, going back to all those nurses!".  Funny.

So what of progress generally? Back in the bad old acute days we used to talk about this journey as being a roller coaster and, although the climbs and dips are longer and less steep, I suppose it still is. 

The current rides are aphasia (or dysphasia, depends who you're talking to) and developing insight. 

We will start with the aphasia which is defined as:

"a condition characterised by either partial or total loss of the ability to communicate verbally or using written words. A person with aphasia may have difficulty speaking, reading, writing, recognising the names of objects, or understanding what other people have said"

Just like cake (mmm...cake), aphasia comes in lots of different flavours.  Jake's flavour is, I am told, 'very interesting'.  Of course it is.  His sentence structure is perfect, but his nouns and adjectives are all jumbled up.  He also gets his prepositions wrong, so he says "when are you going?" when he means "when are you coming?".  He can read and write (Sister in Law and I have had some very interesting texts), but again the words are jumbled.  The good news is that both his receptive and expressive aphasia seem to be slowly improving and his Speech and Language Therapist, Catherine, is amazing.  Jake has connected really well with her and he is co-operating in every session.

This is frustrating and exciting both at the same time; we never expected to get a text message from Jake again, but it is really tough for him to know what he wants to say, but have so much difficulty saying it.

This links to the developing insight challenge; Jake is starting to become more aware of what has happened to him.  Unlike the rest of us, who have had 11 months to get used to this whole brain injury thing, Jake is right at the start of the change curve and is struggling.  Add to that the fact that it is his injured brain and he can't properly express how this feels and you have a man who is frightened, confused, embarrassed, angry, remorseful (I know, silly bugger) and, frankly, a bit lost.

Again, this is heartbreaking for him, but exciting when you look at the bigger picture and consider how this further indicates the amazing progress he is making.

My good friend (and new boss - hurrah) Vicky is always banging on about the laws of creation and how you have to make things happen by thinking, believing and acting as though they will.  So I have decided to start making some real life, long term plans of the holiday variety on the assumption that this progress will continue (yes, yes, I know, it has to end somewhere, but as no-one, not even the experts can say when, I intend to go the glass very full and brimming over route). 

So, next September a group of us are taking Jake to Gran Canaria to a place he has been before and where he will feel safe for a week of well earned, medical professional free, relaxing.  And then in October 2014, which just so happens to be our 5th wedding anniversary, we will be returning to New York where we married, to renew out vows.  Jake doesn't remember our wedding, which is a shame as it was in Central Park and was completely amazing so it only seems fair to let him experience it again.  Clearly this will be a dreadful chore for me, but I will make this sacrifice in the name of love.  New York, New York...so good we married there twice!

I have no idea how we are going to pay for these trips, but if the last 11 months have taught me anything, it's that you can't worry about such details, you just have to crack on with life!