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.
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!
It has been a week of decidedly mixed feelings; last Monday's joy at the news of 'that woman's' change in plea has been tainted by the reality that justice amounts to just 6 points on her license, £545 in fees and costs and increased insurance premiums.
I completely realise we are very lucky to have the opportunity to pursue a claim and there are a many thousands of people who have to adjust to a life utterly changed by a brain injury without this opportunity. I get that our focus should be on the outcome of the civil case and this is just a stage in that journey, but this sentencing outcome has left me feeling decidedly flat.
Flat, that pretty much captures how I'm feeling about the whole legal and financial side of things at the moment. There's only so much drawn out angst, uncertainty and lost sleep you can experience before it accumulates and develops into drama fatigue. I'm exhausted by it all and wish I could turn the volume down on these feelings for a while.
I long for the Summer, when my Jake will be home based most of the time, we can establish some kind of routine for the future and hopefully liability will be agreed meaning I can stop obsessing about running out of money.
Of course, the sun will also be shining; always a bonus when you live close to the beach and have a South facing garden with a large sun deck!
Oh well, if I can survive the last 15 months, I can probably hold out for a few more.
The good news is that Jake seems to be settling into the student house really well and I'm loving how close to home he is; today I was at a meeting in the next town and surprised him by popping in for a cuddle on the way home. This would not have been possible at the rehab hotel and is very good for morale all round. The student house team are introducing a new bi-weekly schedule which varies home visit days and times to support Jake in becoming more comfortable with flexibility and also, along with some additional weekend carer support, to give me some more playing out time. Playing out plans are in place for Friday night, so hurrah for the student house!
In other news, Jake and I had our first outburst-free weekend. There were a couple of close calls, but we were both aware it was happening and worked really well together to let things settle. This feels like a massive step forwards and, although I know that it will not always be that easy, it gives me real hope for the future.
So, some good stuff and some 'meh' stuff. A bit like 'normal' life I suppose.
436 days ago 'that woman' pulled out on to a roundabout and straight in to my Jake, severely damaging his brain and upending all our hopes and dreams. Tomorrow we were finally going to court for the criminal hearing and today she decided to change her plea to guilty. Squeezing every last ounce of our agony out of it along the way!
Frankly this news is huge; huger than a really, really huge thing in fact.
The last 14 months has been like standing on quick sand with a future that was uncertain, scary and potentially bloody awful for us both. This news doesn't change the fact that our lives have completely changed forever and that there will be many difficulties ahead. What it does mean is that we are now back on solid ground where both sides can finally review all the evidence and we can hopefully agree primary liability in the civil case, which should be a much smoother negotiation now that there is a criminal conviction in place. In turn this means that we are on a much firmer footing financially and I no longer feel like we could sink at any moment.
Aside from this new sense of security, what this news also brings is a sense of vindication; I and those that know my Jake were absolutely confident in his ability as a cyclist and knew that he would never, ever drive the wrong way around a roundabout as she claimed. It seems ridiculous that this claim was even entertained really, when you consider how many thousands of miles he'd cycled all over the country and how angry he got with other cyclists when they ignored red lights or didn't take responsibility for themselves as road users.
I cannot tell you how completely lovely it was to make the phone calls that followed my receiving this news, although the cats were a bit freaked out by my dancing around the house singing 'ding dong the witch is dead'!
With any luck this change in plea will oil the ludicrously laborious legal wheels and we can concentrate on getting Jake home and Project Joy off the ground.
Oh yes, a very good day indeed!
Shortly before Jake's accident I was listening to Liza Tarbuck on Radio 2
when she said that her philosophy for life came from a Bob Dylan lyric:
"the best is always yet to come". She put particular emphasis on the
word always and if she had written rather than said it I believe it would have
been in capitals, bold and italics; ALWAYS!
At the time I completely connected to and loved this sentiment and decided
to adopt is as my own. I printed it out and put in my office so I didn't
forget.
And then, and then...
It is hard to believe that the best is always yet to come when the absolute
worst has actually happened. I can honestly say that I haven't revisited those
words since the accident and it is no longer on the wall of my office (or the
floor, I checked), so I suppose I must have taken it down during that murky,
dark time when I was too bewildered and befuddled to know what was happening.
So when I woke suddenly on Saturday night with the thought "what the
hell was that saying I was going to adopt?" racing around my head and
careering into my skull, I decided to take it as a sign. At this stage it is
worth noting that I'm not one for attributing random thoughts to 'signs' or
other fanciful tosh of that sort, but the feeling was so strong I have decided
to go with it.
Not a moment too soon either if my last few blogs have been anything to go
by; blimey, what a moaning minnie I've become!
So, how do you genuinely believe the best is always yet to come when you are
faced with climbing a huge jelly mountain smeared in butter with your feet tied
together (just a metaphor folks, there is no actual jelly)? You make it happen,
that's how.
Almost as soon as Jake was moved out of ITU (for the first time!) I
announced that my mission in life was now to bring joy to Jake's life, whatever
that looked like. Out of this was born the concept of 'Project Jake's Joy'. The
focus of PJJ would be to find life experiences and opportunities to give
purpose, meaning and joy to Jake's life, giving him buckets full of reasons to
be glad to have survived in spite of his remaining deficits and challenges.
But do you know what occurred to me as I lay in bed rooting around the back
of my brain for that phrase? If it's just about Jake, what will that mean for
me, my life, my friends and family and ultimately, what impact would that have
on our marriage? What good is fighting to get Jake back to joy if I lose myself
in the process? How will that help?
So I am now Team Leader of Project Joy and that is what I am going to make
happen. The focus of PJ is to find life experiences and opportunities to give
purpose, meaning and joy to Jake AND everyone who loves and supports him.
Project Joy is a bit formless at the moment; currently there are lots of
ideas and not a lot of firm plans, but hopefully you can help me there. If you
have any ideas, particularly if you have experience as a survivor and someone
who supports and loves one, please share them.
So far we have:
- Volunteering at the Cats Protection League (we start this tomorrow!)
- Imp of Doom restoration
- Wednesday date night
- Posh hotel mini break (booked)
- Gran Canaria holiday (booked)
- Weekend visits to friends in London
- Companion cycling trips
- Beaulieu motor museum
- Imp 50th anniversary weekend for the unveiling of the finished Imp of Doom
- Joining a local girls only monthly dinner club (this one is just for me!)
Tomorrow sees the delivery of our new car (yes, the evil insurance company
wrote the other one off) and next Tuesday is the much longed for and yet dreaded
criminal court date, so never a dull moment in brain injury land!
I would describe myself as a consistently competent and resourceful soul; I was never destined for great genius, but I have always been able to learn and adapt to meet any challenge that came along. The result is not always pretty, but its usually successful. Problems are challenges that I normally enjoy and thrive on and if I'm brutally honest, I'm not very good at failure. I tend to sulk.
Brain injury is 'other', it is different, it exists on a separate plain where the normally resourceful and competent person is completely helpless.
What do you do when your husband, a 42 year old intelligent man, refuses to get out of the car when you are in a hotel car park in the dark and rain? You're 120 miles away from home, it's Boxing Day, he's shouting that he wants to go home, and he is so overloaded and tired that he cannot hear anything you say. He is literally unreasonable.
You're not his health professional or carer, you're his wife. You're tried and frustrated after a challenging Christmas (well, a challenging 14 months actually) and what you really want to do is leave him in the car and go to bed with a large gin.
No, scrap that, what you REALLY want is to have spent the day walking on the beach and then sitting in a pub on the Quay getting squiffy, talking and laughing with your pre-injury husband. Fat chance.
I've looked in my toolkit again and again and no matter how many times I look I simply don't have the skills or the resources to solve this problem. It's exhausting and frightening. It's just too big and unwieldy a problem to solve; it's like trying to nail jelly to a wall.
The only thing that keeps me sane is reading the inspiring stories of other survivors and their families and the knowledge that, although it will never be the same as it was, it will get better than this.
So Happy New Year to those survivors and their families and also to those of you with a huge, jelly like problem to solve. Don't give up.
Oh, and if you have any suggestions as to how I deal with these situations I would be VERY interested and grateful to hear them!
