Freedom

Hello there, I realise it’s been a while.

About a year in fact.

The reason it’s been so long?  We’ve been getting on with life; lovely, normal, reassuringly boring life.

With the exception of a stress related seizure in January, Jake’s health has been bordering on rude and his recovery has been steady; steadily improving in every possible way.

This ceaselessly amazing progress touches every part of our lives and is, for the most part, a source of unremitting joy.

Let me give you some examples.

He travelled up to London on the train last week…on his own! I dropped him at the station and SIL met him at the other end, but still, on his own!

He is also now confident (and capable) enough to stay home alone overnight unsupported, even taking responsibility for ministering to our ever expanding, furry zoo.

The most remarkable shift is in his mind-set; a couple of months ago we received the renewal paperwork for Jake’s disabled badge, something that just a few months ago was an essential tool in supporting Jake to access life outside of our home.  Today? Today it has expired because he has decided that he no longer wants to think of himself as disabled and anyway, he’s hardly using his walking stick now so doesn’t feel he needs the badge anymore!  Extraordinary.

Those of you who have travelled some of this journey with us will appreciate how jaw droppingly astounding all of this is. (Droppingly – I do so like to make up new words; I get it from my Mum, she’s at master level and should be revered).

The downside of this increasing independence and insight for Jake is the gut wrenching sense of isolation and loneliness he now feels as the drama subsides, people move on with their lives and no longer have time. This, according to those in the know, is also a common stage along the well-travelled brain injury journey. You can’t imagine his disappointment at not being the exception to this rule.

For me, this new sense of independence has meant that I also have a great deal more freedom; freedom to work (although I could do with a more regular flow if you know anyone in need of a copy writer); freedom to have a full social life; make genuine personal choices and, dangerously, freedom to think.

The freedom to think is tricky and not all it’s cracked up to be.  The freedom to think has made room for self-doubt and a growing realisation that I’m not needed so much anymore. Having been a committed, ferocious warrior wife for so long, I suddenly find myself lacking purpose. The freedom to think feels like teetering over the precipice, wondering if anyone would really notice if I fell. I’m not so good at heights.

What does all this mean? It means its tipping point time (again).  If the last four years have taught me anything it’s this; tipping points are magical, terrifying, wonderful, unsettling things. They challenge and compel you to do, well, something. I have (tautology warning) absolutely and completely no idea what that something is, but I expect it will show itself soon.

Our wedding: the sequel

Here we are, back in New York after 5 years, three of which have been fairly interesting!

For those of you not that familiar with our story, let me share a quick overview.

5 years ago Jake and I travelled from the UK to New York to get married, in Central Park.  I can't really remember why we chose to do it this way, just that once the thought appeared, it was a decision that made itself.  And what a great decision!  It was a magical day and a memorable holiday, both in New York and then California where we ended our trip with a blissful, schedule-free, 10 day meander up the Pacific Coast Highway.

Fast forward two years and 15 days to the 26th October 2011, the day that everything changed; the day Jake was knocked off his bike by a careless driver and sustained a severe brain injury.

The effects of that injury have been pretty comprehensive and devastating, but one of the hardest (and I suspect weirdest) changes for Jake has been the damage to his long and short term memory (see previous blog: remember this).  

This meant he didn't remember most of our relationship, my name, our home, our cat and, heartbreakingly, our wedding.

If you follow this blog you'll know that Jake has made a truly extraordinary, against all the odds recovery.  He, and therefore we, is still challenged everyday by a range of complex deficits, but there is no doubt that we have been very, very lucky.

So, what else could we do to celebrate and embrace this luck on our fifth wedding anniversary? Yep, we're going to do it all again, 2:30pm tomorrow, back in Central Park, in the boat landing by Bow Bridge.  We're going to the same restaurant to celebrate after (www.monpetitcafe.com - can't recommend it enough) and wonderfully our wedding party has almost doubled since Our Wedding: the Original.  Honestly, I can't quite believe we're here.  As SIL tweeted this morning; small miracles.

Tomorrow is an opportunity to draw a line under the last three years and look forward to a different but happy future, full of opportunities. Whatever you're doing tomorrow please think of us and smile; wonderful things really can emerge out of all the crap stuff that happens in life, you just have to choose to look for the silver linings!

Caught in the embers

Apologies if you come to this blog for a shot of positivity, but here's the thing; I'm depressed.

I'm lucky that my depression is related to the stress and trauma of the last three years and isn't the lifelong malaise that some battle.  I'm hoping this means I can conquer it.

How have I found myself in this land of sadness and confusion?  One of the best things about brain injury is that I have been lucky to connect with many men and women in the same position as me, caring for, supporting, cheerleading, providing therapy to and loving someone with a brain injury.  The shared tales of my contemporaries mean that I know I'm not alone in my current state of depression; it is part of being a warrior wife / husband / partner / son /daughter / sibling.

A common theme seems to be that the mental strength of the one doing the supporting depletes in direct correlation with the recovery and progress of the one with the buggered brain.  As the one we love slowly rises like a phoenix from the flames of their injury, we find ourselves sitting amongst the fading embers, covered in ash and wondering how the hell we got there.

For the last three years I have, quite rightly, put my life on pause.  I have embraced my warrior wife role and all focus has been on building an effective rehab team and creating an environment to give Jake the best possible chance to make the best possible recovery in the context of his complex, devastating injury.  I am proud of this and what we have achieved.  My gladiator husband has seized this opportunity and defied all the odds.  I don't doubt he will continue to do so, I'm just a bit worried about how useful I can be to him at the moment.  I don't really know who I am anymore and what my purpose or worth is.

Useless, worthless, purposeless; that's how I'm feeling right now and that alone tells me I'm not where I should be, out of focus, out of alignment with Charlie at her best.

I don't like this version of Charlie very much.  She drinks too much, overreacts, makes dubious choices, says and does selfish stuff and generally adds little value to anything.

Clearly I need to do something about this.  Firstly I'm going to up my happy pills again.  I had been reducing them, but the reality is I that I still need them at the moment.  I am imagining the sharp intake of disapproving breath from some of my readers; if that's you I would ask you to take a little time to do a little research and find a little empathy. 

One in four people will experience some kind of mental health problem in the course of a year (http://www.mentalhealth.org.uk/help-information/mental-health-statistics/). Antidepressants are a crucial tool in managing clinical depression and work by increasing levels of a group of chemicals in the brain called neurotransmitters; they help you to manage the extremes of your emotions so that you can cope.  If you have a sore eye you might get some eye drops, but you'd let it heal on it's own; however, if you have impaired sight you wear glasses to correct this and enable you to function normally. If your mood is low because you've had a bad week then you might have a night out with good friends and probably feel a lot better, but if it is chronically or clinically low then you take antidepressants to correct this and enable you to function normally.  You should feel no more ashamed of taking antidepressants than wearing glasses. 

I do know that I have a responsibility to not just rely on these tablets though and I am also exercising more (yoga helps immensely) and have had some excellent counselling with a neuropsychologist.

The much anticipated 'Wedding: the Sequel' in New York next week followed by a second honeymoon in Antigua will undoubtedly help too.  Our brain injury won't go away though, so I shall continue to ask for help, keep looking for my worth and purpose and endeavour to grasp hold of Pheonix Jake's tail feathers, hopefully shaking off the embers and ash as we go.

Restoring the balance

I realise I may have been a tad absent...four months can be described as a 'tad', right?  There are many reasons for this, but mainly just getting on with life. 

A few things have happened in the last month to make me think it may be time to share again.  The first was a conversation with a friend. Well, I say a conversation. It was more of a whine on my part, a whine about how people were making all sorts of assumptions about what our lives were like now and some irritatingly flippant comments about how cushy it is.  The friend pointed out that as I only ever post the good stuff on Facebook and have stopped writing the blog, its impossible for anyone to see the balance and understand the reality.

The second is possibly the most shocking demonstration of malice and cruelty I have ever witnessed.  From very early on in our brain injury journey I connected with a fabulous young man on Twitter.  He was on his own journey to recovery and his willingness to share and endless positivity kept me sane in some very dark times.  Over the last few days there have been increasingly worrying updates from his family, culminating in the horrific news that he passed away the night before last.  I was heartbroken.  This meant so many different things in the context of our own journey that I felt so much more than grief for my friend.  I felt a suffocating mix of shock, grief, an aching empathy for his family and gut wrenching fear for my Jake.  How could someone who had been so strong and done so well suddenly get a new bleed and die?  What did this mean for Jake? 

The answer? He didn't.  His twitter account was hacked and someone with no heart or conscience, but a great deal of time on their hands had painstakingly gone through his old tweets to construct a completely believable, fact laden fabrication.  I am at a complete loss as to why someone would do this?  What on earth could be their objective?  What sick need can this have fed?  Can you imagine his family's confusion and then horror when they finally regained control of the account today and read the hundreds of messages of condolence and support?  Yesterday I cried, today I REALLY want to hurt someone!

What this has given me (aside from a strong homicidal urge) is a bit of a kick up the arse generally.  My amazing Twitter friend is still alive and well (hurrah) and there is SO much good in our life.  If I'm going to help others to understand our reality then I really need to stop whining and meet them in the middle; I need to share more of the tough stuff and I need to appreciate the good stuff more. 

So, I am going to try to motivate myself to share one of the tough bits and at least one of the good bits each week.  Here goes!

Today has been a bit tough because I have felt emotionally battered (and hungover) and really needed Jake to be the sympathetic, supportive grown up.  This is not a natural state for someone with frontal lobe damage and he just wanted to remind me that his back hurts and tell me that he was hungry!  Probably doesn't sound like much, but it can be totally soul destroying and wholly dissatisfying; it's really hard to indulge in self-pity when you know the other person has no control over their lack of empathy and is actually doing an amazing job in the context of their injury...boo hoo for me!

Today is exciting because four weeks today we will renew our vows in Central Park, New York, where we married 5 years ago.  Jake is well enough to make and fully engage with the trip and we have the resources and the support of family and friends to make it truly memorable.  Which is good because Jake can't remember the first time and because I get to buy another dress!

Next week will be good because my yoga class starts up again after the Summer break.  You've gotta love a bit of down face dog!

Lucky me

Two years, five months and nine days ago Jake was hit by a car cycling to work.  The driver wasn't paying attention, failed to give way and pulled onto the roundabout into Jake's path.  The consequences of this moment of inattention have been devastating, far reaching and our lives will never, ever be the same.  I have woken each morning after that day fearfully wondering what our future will hold.

It took 14 months to get a criminal conviction and yesterday saw the conclusion of the civil case with an approval hearing at the Royal Courts of Justice; essentially a rubber stamping of the settlement agreed in December.

To be 100% clear; settlements of this kind are designed to meet the ongoing care, therapy and day to days needs of the injured victim to attempt to give them some quality of life that reflects life before the injury.  We have not won the lottery folks.

That said, this morning I feel very, very lucky and am pleased to say that I slept, undisturbed through the night; a very rare thing indeed.

I say I feel lucky because I am very aware that things could have been so very, very different.  I say I feel lucky for two reasons (you'll notice I say 'I'; I don't recommend suggesting to Jake that he is lucky).

Firstly, I am lucky because of all the people and families living with a brain injury for whom a settlement of this kind has never been an option. The Headway website states that there are at least 1 million people in the UK living with the long term effects of brain injury. The majority of these are most likely to be surviving on benefits against an uncertain backdrop of sweeping changes to the benefits system.

Secondly, I am lucky because of the continuing and mistifyingly awesome improvements that Jake continues to make long after the collective accepted wisdom confidently states it should have slowed or even stopped. His psychologist told me this week that she would put no limits on what he could achieve. Ha!

So this morning I awoke not fearfully, but hopefully wondering what the future will hold; how lucky is that?

Not dead...just resting

Sorry...I know it's been a while, but there you go.

As you can imagine, a great many things have happened since I last posted on 3rd January.  So here's a quick run down:

Firstly, we FINALLY have a date for the approval hearing.  I am reliably informed that this is usually a wait of around 6 weeks after a successful Joint Settlement Meeting. The first date we got was scheduled for SEVEN MONTHS after this and, after the not inconsiderate efforts of the lovely Ben from Serious Law, this gap has been reduced (very slightly) and we have a new date of early April, a mere four months after the JSM.  Ho hum, mustn't grumble (though you know I will!)

The incredibly annoying, whilst at the same time utterly adorable, Bonnie Bonxie Boo continues to madden and melt in equal measure, although she is showing promising signs of improving and may yet escape the glue factory.  She's also HUGE and getting bigger every day.

Jake's fabulous PA Keeley very rudely had her baby 4.5 weeks early (I know, anyone would think it was all about her) and then the other PA left under a bit of a cloud, so there was a slightly fraught period where we had no-one.  We have a new PA now who is just the right side of unbalanced to fit perfectly and we have a new member of the team starting next month... and so the panic subsides again for a while!  Since you ask, Keeley and David had the most ridiculously beautiful little boy called Archie whom I plot to kidnap on a daily basis.  Fortunately she has promised to return and stay in touch in the meantime, so it may be that I get sufficient Archie snuggles to resist the kidnapping urges.

In other news I am now self employed!  Bloody scary after 13.5 years as part of the Blue Sky team, but liberating and exciting at the same time.  I'm hoping they will use me on a freelance basis, but if you know anyone looking for some commercial writing let me know!

The best news of all is the continued and (wonderfully) baffling improvement in Jake.  Many issues still and will always remain, but his dogged resilience and persistence, together with his brain having not got the memo about significant recovery only taking place in the first 12 - 18 months, means that everyday he stuns us with new small, but definite gains.  A great example seems to be his prospective memory (remembering to perform intended actions in the future, or simply, remembering to remember), which has just suddenly decided that, after a 2+ year absence, retirement is a bit dull, so it's coming back to work.  How f*#king wonderfully bizarre is that?!?!?!

I am pleased to say that he is also resurrecting the Imp of Doom project (notice I said 'he' and not 'I') and terrified me today whilst surfing car spares sites with the words 'what's paypal?'.  Oh yes, I can hear you laughing now, but it won't be so funny when the lorries start arriving!

The reality is, that this renewed enthusiasm is such an incredibly hopeful and exciting sign that it's hard to exaggerate its significance.  It has led me back to the Imp Club forum where Jake is known as 'Zippy' (no, I don't know either) where I noticed the following sub heading under his login name; '66 Imp "something"...not dead just resting...

How weirdly appropriate is that?

Gifts

Today I shall take down the Christmas decorations and start to sort through the mountain of gifts that Jake and I received.

I always find sorting through the gifts a bit tricky; the rarely spoken reality in most households is that not every gift makes it. Ours fall into three groups;

1. Ooh, that's lovely / useful!

2. It's nice, but I'm not sure what I'm going to do with it...I'll stick it in that cupboard for now.

3. Oh...err...better start a charity shop bag.

I'm sorry if this seems ungrateful, but despite having moved into a much bigger house this year, we still seem to have way too much stuff. So if it falls into group 3 it has to go so we don't end up on that programme 'Hoarders'. I know, you're shocked...you thought I was such a nice person.

I have wondered in the past if it wouldn't be entirely practical to have a Christmas gift swap shop party in January, but this seems fraught with danger in case you forget who bought what and include a gift given to you by a sensitive guest!

The real trick of course is to not unconsciously communicate this sorting process whilst actually receiving the gift. One of the outcomes of frontal lobe damage is a lack of empathy and self-awareness and I am forever grateful that the impact of this is minimal for Jake; he is still really good at pretending to like group 3 gifts!

At this stage I should point out that the vast majority of our gifts are 'group 1' gifts and we are extremely grateful for the thoughtfulness and generosity of our friends and family. Thinking about this did make me reflect on the 'gifts' of brain injury though, and I was surprised at how many group 1 gifts there are. At first glance it can feel like they are all group 3, so I thought I would share some of the group 1 gifts that I am grateful for.

• I am so much closer to both my own and Jake's family and I genuinely believe that this closeness would not have developed without BI.
• As prophesised in all the books, many friends have become less present, but we have made some wonderful new friends who understand and are completely comfortable with our lives now.
• I have been forced to get off life’s travelator and rethink ‘the plan’.  This has allowed me to look at my life objectively and has opened up new opportunities and possibilities.
• We both have a heightened sense of perspective and appreciation for what we still have.

The best gift of all is the depth and power of love that now defines our relationship and colours every part of my life in a way I could never have imagined.  It is like we have cheated time and have the feelings of a lifetime together…but with a lifetime still to share them.  Now that’s definitely a group 1 gift.