Latest blog from: hopegoesupanddown.blogspot.com - a record of the hope, terror and unknown future faced when the one you love most in the world suffers a brain injury.
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 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'.