In response to my last post Missing the Fight a friend on the Headway Healthunlocked site (who has a unique perspective as a TBI survivor) expressed concern that I am "empathising to the point where you are becoming Jake".
This stopped me in my tracks; it was like I'd been walking around with my skirt tucked in my knickers all day and someone finally pointed it out.
I then read back through my last few posts and realised I have, in fact, had them tucked in there for weeks! (Don't worry, this is just a metaphor, I have been changing my pants!)
The thing about me is that I don't like to do anything unless I can do it really well and often I'll choose to avoid doing something all together if I don't think I can do that. Basically I'm a selective perfectionist!
Let me share with you my approach to doing something really well; first you explore the thing in detail to understand the size and shape of it. Then you go out to your network to get insight and advice from someone who is an expert. Then you choose whether to jump in and give it everything you've got, reflecting, reviewing and perfecting your approach as you go.
This works really well with a work project or making your parents' anniversary cake, but you don't get to choose when brain injury comes into your life, it is not something you can avoid, you just have to get on with it and I have been busily trying to be the best wife of a severely brain injured man in the world...ever.
Which is beyond stupid; it is such a slippery,complex and imprecise subject. An afternoon on Google and a 30 minute call with a brain surgeon won't help me to be the best in this scenario. Reading the top three TBI rehab books on Amazon won't enable me to know how to 'fix' Jake. I can't be perfect at this and I'm not helping either of us by trying.
The Headway area manager recently said to me "Jake is completely fine, he has plenty of support and all his needs are being met; what about you and yours?"
Of course, I have no idea how to do any of this.
Oh, how incredibly and annoyingly perceptive these two women are.
Monday, 29 April 2013
Thursday, 25 April 2013
Missing the fight
I haven't blogged for a while because I was letting my reaction to some recent news sink in, feeling a bit confused and waiting to feel good about it. Last week saw some long awaited news and steps forward in our civil case. That woman's insurers have finally accepted primary liability and are making an interim payment that will enable us to buy a bigger home.
So why do I feel so deflated?
I know that some reading this will be wondering what my problem is and rightly so. I get it; we are unbelievably lucky to be able to claim compensation and there are many, many people in our position who don't have that opportunity.
The problem is the wood and the fact that I can now see it for the trees. The last 18 months have been all about the fight; Jake's fight to live, the fight to get him the right treatment and funding, the fight to get justice, the fight to secure our financial future and, frankly, the fight to stay sane.
Today Jake is back at home, he has a phenomenal rehab package in place through the NHS, we have found a property that can accommodate our changed needs, we have a justice of sorts and I know we have a fabulous legal team who will make sure we are OK in the future. I don't have to fight anymore.
There is no doubt that this is a good thing and I am certainly battle weary and in need of a rest, but I miss the fight. The fight is absorbing, a distraction. Deep in the fury and adrenaline of battle you don't have to face the reality of right now and right now I am scared.
I am scared because I am having to face the future and even though I have known it would be tough, that knowledge was an abstract, amorphous thing that I was vaguely aware of. Now I am no longer in the fight reality has been brought into sharp relief.
This breaks my heart, because if it is hard for me, I cannot imagine what it is like for my Jake.
Last night I woke at around midnight to find Jake trying to get comfortable in soaking wet bedding having had a horrendous night sweat. With fresh sheets on the bed and a reassured Jake we both went back to sleep. An hour later Jake got up to go to the loo which wakes me as I need to put the light on for him as he is sight impaired and so unsteady on his feet. A few seconds later I realised that Jake was sleep walking again and going to the toilet in the hallway, waking up and realising as he was doing it. Can you imagine how mortified he was? Now imagine feeling like that and not being able to express it. Imagine that you are so dyspraxic that you are unable to help clean it up and will have to sit on the edge of the bed watching whilst your wife cleans up after you have already watched her get up in the night to change the bedding. Imagine your frontal lobe damage means you can't manage or control your feelings of shame and upset. Now imagine you don't really understand why you are no longer a capable, reliable husband and find yourself helpless, standing in your own urine unable to do anything about it. My imagination certainly didn't let me go back to sleep.
This makes me want to weep. I am SO angry that this has happened to him, to us. I want to sweep him up and transport him away from this reality. I want to take all of his pain and confusion away and would gladly swap places with him in a heartbeat.
So you see, I miss the fight, it was keeping my heart whole.
So why do I feel so deflated?
I know that some reading this will be wondering what my problem is and rightly so. I get it; we are unbelievably lucky to be able to claim compensation and there are many, many people in our position who don't have that opportunity.
The problem is the wood and the fact that I can now see it for the trees. The last 18 months have been all about the fight; Jake's fight to live, the fight to get him the right treatment and funding, the fight to get justice, the fight to secure our financial future and, frankly, the fight to stay sane.
Today Jake is back at home, he has a phenomenal rehab package in place through the NHS, we have found a property that can accommodate our changed needs, we have a justice of sorts and I know we have a fabulous legal team who will make sure we are OK in the future. I don't have to fight anymore.
There is no doubt that this is a good thing and I am certainly battle weary and in need of a rest, but I miss the fight. The fight is absorbing, a distraction. Deep in the fury and adrenaline of battle you don't have to face the reality of right now and right now I am scared.
I am scared because I am having to face the future and even though I have known it would be tough, that knowledge was an abstract, amorphous thing that I was vaguely aware of. Now I am no longer in the fight reality has been brought into sharp relief.
This breaks my heart, because if it is hard for me, I cannot imagine what it is like for my Jake.
Last night I woke at around midnight to find Jake trying to get comfortable in soaking wet bedding having had a horrendous night sweat. With fresh sheets on the bed and a reassured Jake we both went back to sleep. An hour later Jake got up to go to the loo which wakes me as I need to put the light on for him as he is sight impaired and so unsteady on his feet. A few seconds later I realised that Jake was sleep walking again and going to the toilet in the hallway, waking up and realising as he was doing it. Can you imagine how mortified he was? Now imagine feeling like that and not being able to express it. Imagine that you are so dyspraxic that you are unable to help clean it up and will have to sit on the edge of the bed watching whilst your wife cleans up after you have already watched her get up in the night to change the bedding. Imagine your frontal lobe damage means you can't manage or control your feelings of shame and upset. Now imagine you don't really understand why you are no longer a capable, reliable husband and find yourself helpless, standing in your own urine unable to do anything about it. My imagination certainly didn't let me go back to sleep.
This makes me want to weep. I am SO angry that this has happened to him, to us. I want to sweep him up and transport him away from this reality. I want to take all of his pain and confusion away and would gladly swap places with him in a heartbeat.
So you see, I miss the fight, it was keeping my heart whole.
Tuesday, 9 April 2013
Good people
In a very weird way brain injury is both isolating and inclusive. All of the books tell you that after the initial acute phase people who have been very involved will become less present, often finding if difficult to know how to interact with the new person the survivor inevitably becomes. One hates to be a cliche, but that has definitely happened to us. That's not a dig by the way, it's just the way it is.
The compensation for this is the new network of virtual friends I have found through social networking. Both Twitter and the Headway health unlocked site have brought me into contact with good people who understand, would never judge and give me endless support and encouragement.
I think my favourite thing about the very good people on the Headway forum is the utter lack of bullshit; whether it is because of frontal lobe damage or just simply the honesty of people who have experienced true trauma, I know that what I read is real, unvarnished and truthful; even if that means sometimes it is a little blunt! I can count on one hand the number of people in my non-virtual life who are that genuine; wouldn't be great if everyone was? Apart from Jake obviously, I could REALLY do without some of his frontal lobe damage induced bluntness!
This life is far from easy, but the comradeship and acceptance of my virtual friends makes it easier to cope.
This life also makes you look at problems a little more creatively; when Jake sustained his severe injury 17 months ago he wasn't expected to survive and no one could have predicted that last weekend he would stand up next to his great friend Mike as his best man. With such a complex mix of cognitive and speech deficits the best man speech was always going to be a bit tricky, but with the help of my sister in law's colleague (and very good people) Andy Davies, we still managed to make everyone cry with this! The best man
The compensation for this is the new network of virtual friends I have found through social networking. Both Twitter and the Headway health unlocked site have brought me into contact with good people who understand, would never judge and give me endless support and encouragement.
I think my favourite thing about the very good people on the Headway forum is the utter lack of bullshit; whether it is because of frontal lobe damage or just simply the honesty of people who have experienced true trauma, I know that what I read is real, unvarnished and truthful; even if that means sometimes it is a little blunt! I can count on one hand the number of people in my non-virtual life who are that genuine; wouldn't be great if everyone was? Apart from Jake obviously, I could REALLY do without some of his frontal lobe damage induced bluntness!
This life is far from easy, but the comradeship and acceptance of my virtual friends makes it easier to cope.
This life also makes you look at problems a little more creatively; when Jake sustained his severe injury 17 months ago he wasn't expected to survive and no one could have predicted that last weekend he would stand up next to his great friend Mike as his best man. With such a complex mix of cognitive and speech deficits the best man speech was always going to be a bit tricky, but with the help of my sister in law's colleague (and very good people) Andy Davies, we still managed to make everyone cry with this! The best man
Monday, 1 April 2013
Here's hoping
Someone recently asked me if I was 'OK' because I seemed a 'bit up and down at the moment'. They were completely genuine in their question and I know it came from a place of caring.
Their choice of words made me smile inwardly in a sort of ironic way as the title of this blog is no accident; every stage of this journey has taken us up and down, like a twisted game of snakes and ladders.
In the early phases you career between the hope of a flickered eyelid and the terror of the 'when to withdraw treatment' conversations. As time moves on you are buffeted between the joy of small victories like the first few sips of thickened water and the pain of accepting what is lost. This develops into a focus on how much rather than if at all and still you undulate along the ups and downs, grateful to still be on the journey.
In a weird 'if I knew then what I know now' way the more acute, in-patient phase is not so bad; you have tangible, concrete things to focus on and a place to spend your hope. You can clearly chart the improvements and have no real responsibility for what happens in that environment. If it's not working, then 'they're' doing something wrong. The highs and lows are more immediate and visceral, but at least you can take comfort from knowing hope is likely to go up again soon.
No, the worst ups and downs are the ones that are so imperceptible as to hardly register. As progress slows and you begin to establish the new 'normal', everyday feels like an unremitting, featureless landscape and you find yourself compensating by experiencing every tiny thing, whether good or bad, to it's extreme, a bit like voluntary bi-polar. Trying to force the hope to do something, anything.
Add to this the constant feeling of failure you have from not being able to help, understand, mend it, or do the right thing in any situation and you start to feel as though you are truly running on empty. I have believed that I reached this point many times over the last 17 months only to be able to thankfully scrape some more reserves off the bottom of the barrel, I am sure I will do so again and be rewarded by an upward tilt soon.
So, if I seem a bit up and down it is because that is the nature of brain injury whatever the stage; hope goes up...hope goes down.
Their choice of words made me smile inwardly in a sort of ironic way as the title of this blog is no accident; every stage of this journey has taken us up and down, like a twisted game of snakes and ladders.
In the early phases you career between the hope of a flickered eyelid and the terror of the 'when to withdraw treatment' conversations. As time moves on you are buffeted between the joy of small victories like the first few sips of thickened water and the pain of accepting what is lost. This develops into a focus on how much rather than if at all and still you undulate along the ups and downs, grateful to still be on the journey.
In a weird 'if I knew then what I know now' way the more acute, in-patient phase is not so bad; you have tangible, concrete things to focus on and a place to spend your hope. You can clearly chart the improvements and have no real responsibility for what happens in that environment. If it's not working, then 'they're' doing something wrong. The highs and lows are more immediate and visceral, but at least you can take comfort from knowing hope is likely to go up again soon.
No, the worst ups and downs are the ones that are so imperceptible as to hardly register. As progress slows and you begin to establish the new 'normal', everyday feels like an unremitting, featureless landscape and you find yourself compensating by experiencing every tiny thing, whether good or bad, to it's extreme, a bit like voluntary bi-polar. Trying to force the hope to do something, anything.
Add to this the constant feeling of failure you have from not being able to help, understand, mend it, or do the right thing in any situation and you start to feel as though you are truly running on empty. I have believed that I reached this point many times over the last 17 months only to be able to thankfully scrape some more reserves off the bottom of the barrel, I am sure I will do so again and be rewarded by an upward tilt soon.
So, if I seem a bit up and down it is because that is the nature of brain injury whatever the stage; hope goes up...hope goes down.
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