Tuesday, 2 October 2012

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!

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