Greetings my hopeful friends. I trust you are having a good week?
Frankly there are a lots of brain injury related things I could have a moan about that have happened in our world this week, but instead I choose to share with you that a little bit more of the fabulous and rather unique brand of lunacy that characterises my husband continues to show itself each day. As I write this it occurs to me that if you have only known Jake or our story since the accident, then you won't know what I mean by that.
To be honest, that makes me a bit sad, as you have missed out on knowing a truly awesome man (so far) and so this blog is all about Jake and what makes him the extraordinary person I love most in the world, with or without a brain injury.
Like so many couples these days, Jake and I met through an online dating site (match.com since you ask). What attracted me to him initially, apart from the foxy photo obviously, was his honesty, intelligence and ability to make fun of himself. He did try for a while to claim that I contacted him first, but I have proof this is not the case. He also exaggerated his height a little on his profile, but don't tell him I told you.
When we spoke on the phone for the first time it was for 2 hours and I laughed for the full 120 minutes for he is a spectacularly silly bugger; a critical attribute for any prospective partner in my humble opinion.
As I got to know Jake more deeply I got to know the sensitive, sometimes vulnerable soul that he hides beneath the humour and the 'proper bloke' persona he projects. Like most men he can occasionally be stupendously thoughtless (sorry chaps, but there it is), but never when it really mattered and I have always known I could count on him to do the right thing; I have always known how important I am to him.
Taking as read his incredible determination, drive and bounce-back-ability that I have written about many times in this blog before, the other significant aspect of Jake's character is that he is a rescuer; an old fashioned, generous, good in a crisis, knight in shining armour and hero.
This is so fundamental to who Jake is it can be seen in every aspect of his pre-TBI life; nobody in Jake's life ever had to get someone in to fix their computer/car/bike; if you had an emergency or a crisis he would drop everything to be there (I have so many examples of this I could share!); he would spend hours doing unrequested online research for someone if they mentioned they were unsure about an important purchase; and he would (and often did) spend his last few pounds treating someone, even if it meant having no money for his lunch the next day. This characteristic can also been seen in the complete career change he made in his 30's (did I mention how brave he is?) going back to school to get a degree and become a radiographer where helping people was the thing he loved most about the role. Oh, and if you know of any old, irritable, ugly and violent cats that need a new home, please don't tell Jake about them, otherwise we'll be adopting again!
How terribly hard it must be for him to be the one that needs rescuing now.
So, this is part one; my perspective. If you are reading this and you knew my Jake before his accident, please share your perspective in the comments box below or send me a (brief!) email and I promise to share this in the next blog.
If you don't know Jake personally yet, I look forward to one day introducing him to you in person. I know you'll love him.
Tuesday, 13 November 2012
Friday, 2 November 2012
Nowhere to hide
You won't be all that
surprised to hear that one of the main things that drew Jake and I together was
our shared values; I suppose the best description would be that we are both
sort of old fashioned liberals.
Fairness, doing the right thing, thoughtfulness, modesty and mutual respect set the tone for our relationship and, having gone through a fairly unhealthy, self-destructive period in my twenties, finding an old fashioned gentleman like Jake was like steering my ship through a raging storm into a safe harbour.
We would often visit other people in their homes and I would find myself thinking 'thank God Jake's not like that' as partners belched their way through a meal, left the bathroom door open when they were relieving themselves or were openly rude or dismissive to their partner. I'm sure some of you are reading this and thinking 'what an old woman, I have no problem with that', but my Dad and Step Dad are both old fashioned gentleman, so it's not that surprising that I would look for this in a partner.
I realise now that I drew our relationship and Jake's respectful, unconditional love around me like a comforting armour that would keep me safe and all those who would intrude or harm me (including myself) at bay.
You can imagine then how challenging I am finding facing alone the completely intrusive, exposing nature of our current situation. In the last week I have had to discuss specifics of our sex life with four different people. Don't get me wrong, I'm not a prude, I just don't feel all that comfortable sharing the intimate mechanics and detail of this most private element of our marriage.
However, this is not the only area of intrusion and exposure; our finances, aspirations, plans for a family, where we will live, how I will work, when we're 'allowed' to be together, how my husband's treatment and rehab is managed, where we can go on our own and pretty much anything else you can think of are all open for scrutiny and comment from, it seems, all and any party that claims or expresses an interest.
This feeling of exposure and being out of control is compounded by the continuing uncertainty of both the criminal and civil cases, where faceless people are making life changing decisions without having even met us.
Ronald Reagan once said "the most terrifying words in the English language are: I'm from the government and I'm here to help".
Well, I know that all these parties, whether official or personal in their connection, have a good intent, genuinely want to help and also that in many cases we need and have sought out that help; but sometimes I feel so exposed and raw that it seems as though nowhere and nothing is private anymore and I can't navigate back to that safe harbour because he is facing his own storm.
At those times I would like them all to bugger off and mind their own business, or at least give a little more thought to their impact!
Fairness, doing the right thing, thoughtfulness, modesty and mutual respect set the tone for our relationship and, having gone through a fairly unhealthy, self-destructive period in my twenties, finding an old fashioned gentleman like Jake was like steering my ship through a raging storm into a safe harbour.
We would often visit other people in their homes and I would find myself thinking 'thank God Jake's not like that' as partners belched their way through a meal, left the bathroom door open when they were relieving themselves or were openly rude or dismissive to their partner. I'm sure some of you are reading this and thinking 'what an old woman, I have no problem with that', but my Dad and Step Dad are both old fashioned gentleman, so it's not that surprising that I would look for this in a partner.
I realise now that I drew our relationship and Jake's respectful, unconditional love around me like a comforting armour that would keep me safe and all those who would intrude or harm me (including myself) at bay.
You can imagine then how challenging I am finding facing alone the completely intrusive, exposing nature of our current situation. In the last week I have had to discuss specifics of our sex life with four different people. Don't get me wrong, I'm not a prude, I just don't feel all that comfortable sharing the intimate mechanics and detail of this most private element of our marriage.
However, this is not the only area of intrusion and exposure; our finances, aspirations, plans for a family, where we will live, how I will work, when we're 'allowed' to be together, how my husband's treatment and rehab is managed, where we can go on our own and pretty much anything else you can think of are all open for scrutiny and comment from, it seems, all and any party that claims or expresses an interest.
This feeling of exposure and being out of control is compounded by the continuing uncertainty of both the criminal and civil cases, where faceless people are making life changing decisions without having even met us.
Ronald Reagan once said "the most terrifying words in the English language are: I'm from the government and I'm here to help".
Well, I know that all these parties, whether official or personal in their connection, have a good intent, genuinely want to help and also that in many cases we need and have sought out that help; but sometimes I feel so exposed and raw that it seems as though nowhere and nothing is private anymore and I can't navigate back to that safe harbour because he is facing his own storm.
At those times I would like them all to bugger off and mind their own business, or at least give a little more thought to their impact!
Tuesday, 30 October 2012
Ambush!
It's been a busy 'ole week in tbi rehab land.
On Thursday the architects came back to draw up final plans for adaptations to Korving Towers and the spec has now been sent out to potential contractors for quotes. It will soon be time for the house to be covered in dust and the cats to hide in the bottom of the wardrobe again.
Also on Thursday the independent Case Manager and the NHS case manager both came to the house to stage an intervention; but more on that later.
On Friday Jake came home in my car for the first time, having only ever travelled that distance in the back of a taxi before. Mum came to help in case she was needed and she sat in the back behind Jake; I hadn't thought this through all that well as Jake's wheelchair is massive and our four seater cabriolet is not, which meant Mum was pinned in by the frame in a manner that was probably not all that safe! It went really well though and the journey back (minus a squashed parent) was very peaceful.
Friday was also the one year anniversary of Jake's accident. It may sound strange but I chose not to view this as a sad day, but rather a day worth celebrating; the day that Jake survived against all the odds. I'd much rather focus on the next 12 months.
On Saturday a consultant neurologist with a special interest in brain injury and neurological rehabilitation came to see us and he spent 3 hours going over the case history and assessing Jake for our civil case. He was really lovely and spent a lot of time looking at the detail to make sure he had the full picture. He also spent a lot of time listening to me and sharing his thoughts on how Jake's rehab may progress. They say that every rule needs an exception; well he appears to be the exceptional consultant that proves the rule that you have to have the bits of your brain that deal with empathy and humility removed when you become a consultant.
On Sunday Richard and Karen from the Imp Club came to meet Jake and look at the car. He was so happy and when we took them to see the car his aphasia practically disappeared. I am really hopeful that this project will have a significant impact on his rehab; it certainly will form a key element of 'Project Jake's Joy'. I'll tell you more about that in another blog.
Yesterday was fairly standard aside from the fact that Jake has started to get to grips with texting and commenting on Facebook. As with his spoken word the aphasia is still affecting the words, but the understanding and meaning is definitely coming through. In response to my "hello my love" text I received "hey darling". Bloody fantastic!
Today I have found a cleaner. This has nothing to do with tbi rehab, I just wanted to gloat.
So, back to the Case Manager duo's ambush last Thursday. We were due to meet with the weekend care providers for a routine review at 1:30pm, but the CM's wanted to meet an hour earlier. Well, the minute they walked through the door their tension and discomfort was palpable (am I really that scary?). We sat down in the lounge and there was much shuffling of papers and throat clearing. I finally begged them to say whatever it was that they were there to say and they finally told me; Jake is on the move again.
When I first heard this my overwhelming emotion was exasperation; he's only just got settled again since the last disastrously handled move and moving him again so soon seemed unthinkable. Fortunately I'm a very reasonable and adult individual (ahem) so I allowed them to explain.
The rehab focus is shifting to ensure Jake is ready to come home next year and that this return home is successful. So in December, assuming all stakeholders are in agreement, we will move from the Rehab Hotel to the student house (no really, that's exactly how it feels, right down to the labels on people's food cupboards!). The student house is a transitional living unit which is part of a larger Neuro Care Centre. The rationale behind this move is that the student house is less than 8 miles from home.
This will enable Jake to start connecting with the local Poole community, visiting the local gym / pool and accessing Headway rehab groups (swimming, gardening etc.), It will give us more flexibility in terms of coming home, so it feels less rigid and the occupational therapists can work with Jake in our home during the week which will make the rehab more meaningful.
Having got over the initial shock this feels like a good thing. Let's face it, it will be nice to not have to do 8 hours travelling back and forth from the rehab hotel every week!
As weeks go, it's been a corker!
On Thursday the architects came back to draw up final plans for adaptations to Korving Towers and the spec has now been sent out to potential contractors for quotes. It will soon be time for the house to be covered in dust and the cats to hide in the bottom of the wardrobe again.
Also on Thursday the independent Case Manager and the NHS case manager both came to the house to stage an intervention; but more on that later.
On Friday Jake came home in my car for the first time, having only ever travelled that distance in the back of a taxi before. Mum came to help in case she was needed and she sat in the back behind Jake; I hadn't thought this through all that well as Jake's wheelchair is massive and our four seater cabriolet is not, which meant Mum was pinned in by the frame in a manner that was probably not all that safe! It went really well though and the journey back (minus a squashed parent) was very peaceful.
Friday was also the one year anniversary of Jake's accident. It may sound strange but I chose not to view this as a sad day, but rather a day worth celebrating; the day that Jake survived against all the odds. I'd much rather focus on the next 12 months.
On Saturday a consultant neurologist with a special interest in brain injury and neurological rehabilitation came to see us and he spent 3 hours going over the case history and assessing Jake for our civil case. He was really lovely and spent a lot of time looking at the detail to make sure he had the full picture. He also spent a lot of time listening to me and sharing his thoughts on how Jake's rehab may progress. They say that every rule needs an exception; well he appears to be the exceptional consultant that proves the rule that you have to have the bits of your brain that deal with empathy and humility removed when you become a consultant.
On Sunday Richard and Karen from the Imp Club came to meet Jake and look at the car. He was so happy and when we took them to see the car his aphasia practically disappeared. I am really hopeful that this project will have a significant impact on his rehab; it certainly will form a key element of 'Project Jake's Joy'. I'll tell you more about that in another blog.
Yesterday was fairly standard aside from the fact that Jake has started to get to grips with texting and commenting on Facebook. As with his spoken word the aphasia is still affecting the words, but the understanding and meaning is definitely coming through. In response to my "hello my love" text I received "hey darling". Bloody fantastic!
Today I have found a cleaner. This has nothing to do with tbi rehab, I just wanted to gloat.
So, back to the Case Manager duo's ambush last Thursday. We were due to meet with the weekend care providers for a routine review at 1:30pm, but the CM's wanted to meet an hour earlier. Well, the minute they walked through the door their tension and discomfort was palpable (am I really that scary?). We sat down in the lounge and there was much shuffling of papers and throat clearing. I finally begged them to say whatever it was that they were there to say and they finally told me; Jake is on the move again.
When I first heard this my overwhelming emotion was exasperation; he's only just got settled again since the last disastrously handled move and moving him again so soon seemed unthinkable. Fortunately I'm a very reasonable and adult individual (ahem) so I allowed them to explain.
The rehab focus is shifting to ensure Jake is ready to come home next year and that this return home is successful. So in December, assuming all stakeholders are in agreement, we will move from the Rehab Hotel to the student house (no really, that's exactly how it feels, right down to the labels on people's food cupboards!). The student house is a transitional living unit which is part of a larger Neuro Care Centre. The rationale behind this move is that the student house is less than 8 miles from home.
This will enable Jake to start connecting with the local Poole community, visiting the local gym / pool and accessing Headway rehab groups (swimming, gardening etc.), It will give us more flexibility in terms of coming home, so it feels less rigid and the occupational therapists can work with Jake in our home during the week which will make the rehab more meaningful.
Having got over the initial shock this feels like a good thing. Let's face it, it will be nice to not have to do 8 hours travelling back and forth from the rehab hotel every week!
As weeks go, it's been a corker!
Wednesday, 24 October 2012
Disinhibited joy
Sometimes the advice we get from the professionals makes perfect sense and we dutifully take it on board and do our best to reflect it in our actions. Sometimes however I stick my fingers in my ears and sing 'la, la, la, I can't hear you'!
Let me give you an example; in the main, the phases of recovery that Jake is experiencing are painful, heartbreaking and frightening. There is a great deal of hope, but the process is bobbins.
This week, however, we have a phase that I personally think is brilliant. Put your hands together folks and give a warm welcome to traumatic brain injury induced disinhibition!
I know it doesn't sound all that good and if it was more extreme or the episodes more prolonged it would become a problem. I am assured though that at this point they believe Jake's is par for the course and 'normal' in the context of this stage of recovery.
Basically it's a bit like being stoned or a very happy drunk; everything is hilarious and he sees absurdity in the strangest things. Yesterday we were lying on his bed crying with unrestrained and uncontrolled laughter over his inability to find the right word; not something that's been all that amusing up to this point.
It has been explained to me that this extreme behaviour and the flip side which often sees him getting stuck in negative thoughts, doesn't reflect his actual levels of emotion. In other words if he is outwardly REALLY happy or sad, he's not actually feeling that good or bad, he just doesn't have the appropriate behavioural filters to manage it at the moment (let's be honest, we all know people like that!).
Yesterday his Speech and Language Therapist advised me not to engage or join in with this as my validating it will exacerbate this false behaviour. Well, I am totally bought into this advice from the perspective of the negative thoughts. But...but...really? It's so fantastic to see him so completely and unreservedly joyful; it's like a happiness atom bomb has gone off inside him and all the bright, white glee is exploding outwards and bathing us both in some long overdue joy.
Surely this eruption of happiness is good for him? It felt pretty good to me!
I'm sure I will take this advice on board eventually, but maybe I'll pretend I haven't heard it just for this weekend.
I leave you with an Imp of Doom update: some lovely people from the Imp Club are coming to Korving Towers THIS weekend to get an idea of what's needed to help us achieve our anniversary meet goal. One more reason to be happy!
Let me give you an example; in the main, the phases of recovery that Jake is experiencing are painful, heartbreaking and frightening. There is a great deal of hope, but the process is bobbins.
This week, however, we have a phase that I personally think is brilliant. Put your hands together folks and give a warm welcome to traumatic brain injury induced disinhibition!
I know it doesn't sound all that good and if it was more extreme or the episodes more prolonged it would become a problem. I am assured though that at this point they believe Jake's is par for the course and 'normal' in the context of this stage of recovery.
Basically it's a bit like being stoned or a very happy drunk; everything is hilarious and he sees absurdity in the strangest things. Yesterday we were lying on his bed crying with unrestrained and uncontrolled laughter over his inability to find the right word; not something that's been all that amusing up to this point.
It has been explained to me that this extreme behaviour and the flip side which often sees him getting stuck in negative thoughts, doesn't reflect his actual levels of emotion. In other words if he is outwardly REALLY happy or sad, he's not actually feeling that good or bad, he just doesn't have the appropriate behavioural filters to manage it at the moment (let's be honest, we all know people like that!).
Yesterday his Speech and Language Therapist advised me not to engage or join in with this as my validating it will exacerbate this false behaviour. Well, I am totally bought into this advice from the perspective of the negative thoughts. But...but...really? It's so fantastic to see him so completely and unreservedly joyful; it's like a happiness atom bomb has gone off inside him and all the bright, white glee is exploding outwards and bathing us both in some long overdue joy.
Surely this eruption of happiness is good for him? It felt pretty good to me!
I'm sure I will take this advice on board eventually, but maybe I'll pretend I haven't heard it just for this weekend.
I leave you with an Imp of Doom update: some lovely people from the Imp Club are coming to Korving Towers THIS weekend to get an idea of what's needed to help us achieve our anniversary meet goal. One more reason to be happy!
Monday, 22 October 2012
Where have all the heroes gone?
Watching the news today I was struck by how easily our heroes fall; at the start of the year Jimmy Savile was a fondly remembered fund raising hero, Lance Armstrong was an inspiring sporting hero and survivor and John Terry was a respected national role model.
These are people about whom we are bombarded with carefully crafted PR and that we build pedestals for and so it is perhaps not that surprising when some of them slip off; maybe we need to start looking for our heroes in different places?
Well, I have had a look in my own life and have found literally hundreds, but there are two in particular I thought I would share with you.
The first is a man who has been part of mine and Jake's journey for the last 6 months, but who we are saying goodbye to today (hopefully only professionally). Sebastian started driving Jake when he was still in Boot Camp and when he couldn't walk, communicate or control his emotions. Back then we quickly came to rely on Sebastian to be sensitive, caring, thoughtful and never patronising. As time has moved on he has become more of a friend to us both and Jake is always pleased to see him, if not always pleased that he's being taken back to the Rehab Hotel! Seeing them shake hands and exchange small talk (even if it made no sense!) has been a really good benchmark of how things have moved on. From my perspective Sebastian has been flexible and understanding when things have had to change last minute, he has been empathetic and supportive when I have failed to hold it together, known when silence is the right thing and he has cheered me up with his quirky humour when I have been struggling to see the funny side. He even tolerated my endless fiddling with the radio!
It is people like Sebastian that make us feel safe and in control and, although it is exciting to be finally at the stage where I can drive Jake myself, we will no doubt miss him.
Thank you Sebastian.
The second is not one person, it is an organisation; The Imp Club. For those of you that don't know, Jake has a 44 year old Hillman Imp that he has had for 23 years. Next year is the 50th anniversary of the Imp and Jake was determined to finally get the 'Imp of Doom' as he calls it, fully restored in time for the anniversary club meet next Summer.
When we moved to our new home just 2 months before his accident, Jake finally had a garage and for the first time since he left his parents many years ago, his Imp, most of the spares he needed and his tools were all in one place. He was all set. And then life happened.
Well, this weekend for the first time since his accident Jake got excited about the car again. The challenge of course is that Jake had a wide range of physical and cognitive impairments that may or may not improve and so starting work on his beloved Imp is not something he can do alone.
All the medical experts agree that having an interest to focus on that he is passionate about will significantly help his recovery and I am desperate to help him to get the Imp to the anniversary meet.
Sadly I have neither the knowledge or capability to do this, so I appealed to the club for help and my timing could not have been better as yesterday was their AGM and Jake was an agenda item.
They got in touch to find out how they can help, are reinstating Jake's club membership on our behalf, are making me an associate member and clearly just want to do whatever they can without any expectations in return. I have also been contacted by members of the Imp Club forum with offers of help and support. These heroes don't know me from Adam and have only ever had contact with Jake on-line before, but they are keen to get involved and have restored my faith in human kind. Getting Jake and the Imp of Doom to the anniversary meet would be truly wonderful and the Imp Club heroes have made me feel that this may now be possible.
I wonder what heroes you already have in your life and who is waiting in the wings to step up and be heroic when you need them?
These are people about whom we are bombarded with carefully crafted PR and that we build pedestals for and so it is perhaps not that surprising when some of them slip off; maybe we need to start looking for our heroes in different places?
Well, I have had a look in my own life and have found literally hundreds, but there are two in particular I thought I would share with you.
The first is a man who has been part of mine and Jake's journey for the last 6 months, but who we are saying goodbye to today (hopefully only professionally). Sebastian started driving Jake when he was still in Boot Camp and when he couldn't walk, communicate or control his emotions. Back then we quickly came to rely on Sebastian to be sensitive, caring, thoughtful and never patronising. As time has moved on he has become more of a friend to us both and Jake is always pleased to see him, if not always pleased that he's being taken back to the Rehab Hotel! Seeing them shake hands and exchange small talk (even if it made no sense!) has been a really good benchmark of how things have moved on. From my perspective Sebastian has been flexible and understanding when things have had to change last minute, he has been empathetic and supportive when I have failed to hold it together, known when silence is the right thing and he has cheered me up with his quirky humour when I have been struggling to see the funny side. He even tolerated my endless fiddling with the radio!
It is people like Sebastian that make us feel safe and in control and, although it is exciting to be finally at the stage where I can drive Jake myself, we will no doubt miss him.
Thank you Sebastian.
The second is not one person, it is an organisation; The Imp Club. For those of you that don't know, Jake has a 44 year old Hillman Imp that he has had for 23 years. Next year is the 50th anniversary of the Imp and Jake was determined to finally get the 'Imp of Doom' as he calls it, fully restored in time for the anniversary club meet next Summer.
When we moved to our new home just 2 months before his accident, Jake finally had a garage and for the first time since he left his parents many years ago, his Imp, most of the spares he needed and his tools were all in one place. He was all set. And then life happened.
Well, this weekend for the first time since his accident Jake got excited about the car again. The challenge of course is that Jake had a wide range of physical and cognitive impairments that may or may not improve and so starting work on his beloved Imp is not something he can do alone.
All the medical experts agree that having an interest to focus on that he is passionate about will significantly help his recovery and I am desperate to help him to get the Imp to the anniversary meet.
Sadly I have neither the knowledge or capability to do this, so I appealed to the club for help and my timing could not have been better as yesterday was their AGM and Jake was an agenda item.
They got in touch to find out how they can help, are reinstating Jake's club membership on our behalf, are making me an associate member and clearly just want to do whatever they can without any expectations in return. I have also been contacted by members of the Imp Club forum with offers of help and support. These heroes don't know me from Adam and have only ever had contact with Jake on-line before, but they are keen to get involved and have restored my faith in human kind. Getting Jake and the Imp of Doom to the anniversary meet would be truly wonderful and the Imp Club heroes have made me feel that this may now be possible.
I wonder what heroes you already have in your life and who is waiting in the wings to step up and be heroic when you need them?
Tuesday, 16 October 2012
a little bit overwhelmed
The problem with this frankly awful experience is that, despite continuing progress and the small, uplifting triumphs that thankfully still come, it is too huge and unpredictable a challenge to stay on top of. Everyday I get up, dust myself off and start again and everyday I feel so utterly helpless and inadequate; my beautiful Jake is having such a tough time at the moment and I would give anything to take it all away and would swap places with him in a heartbeat. I know it's pointless to feel this way, but I suppose what I am saying is ITS NOT BLOODY FAIR!
Imagine being a highly intelligent, successful and well respected man, finally settled in your personal life, starting to achieve great things in a new career that you switched to in your 30's, having already excelled in a previous career and looking forward to hopefully soon becoming a Dad. You are known for your quick wit and impressive vocabulary, people often turn to you for help, you can turn your hand to pretty much anything and you enjoy setting yourself and achieving stretching challenges like cycling from Lands End to John O' Groats unsupported...twice.
Now imagine slowly becoming aware that something is very, very wrong. You no longer have control of your mind, emotions or body. You can't find the words to express yourself anymore, and you can't understand what is being said to you. You have permanent double vision, you topple over if you try to stand or walk too quickly and you have gone from being strong and able, to needing help with pretty much everything. You get frightened, angry, upset and confused without really knowing why. You get stuck doing the simplest things and have to be guided and supported to achieve the most basic and personal tasks. You have to surrender your fate to others and feel so completely out of control it is crushing. Then someone tells you that this is because you have been in an accident which has left you with a severe brain injury, it happened nearly a year ago and no one can say how much you will recover, only that it will be a life long journey.
Everything that defined you has either changed or gone. The rug you were standing on has been well and truly pulled out.
I don't know about you, but I'm not sure I would survive this experience. Not my Jake though. He is undoubtedly struggling; he's not a machine, but his ability to pick himself up and keep on trying in the face of such a huge mountain to climb is both inspiring and heartbreaking. He is so hard on himself if he gets it wrong or can't do something (which happens a lot) that my role has become one of cheerleader, coach, counsellor and, sometimes, just listener.
I try to be strong for him, but I get so angry and overwhelmed by how bloody unfair all this is and I certainly don't think I would be able to find the strength to use humour to manage my anxiety and be self effacing when I repeatedly make the same mistake. My Jake does though.
He is terrified but determined, frustrated but focused, devastated but resolute.
If all of the pride, love and respect I feel for my husband escaped from within me it would envelop the world and Felix Baumgartner would have been able to see it from his balloon!
I love you Jake.
Imagine being a highly intelligent, successful and well respected man, finally settled in your personal life, starting to achieve great things in a new career that you switched to in your 30's, having already excelled in a previous career and looking forward to hopefully soon becoming a Dad. You are known for your quick wit and impressive vocabulary, people often turn to you for help, you can turn your hand to pretty much anything and you enjoy setting yourself and achieving stretching challenges like cycling from Lands End to John O' Groats unsupported...twice.
Now imagine slowly becoming aware that something is very, very wrong. You no longer have control of your mind, emotions or body. You can't find the words to express yourself anymore, and you can't understand what is being said to you. You have permanent double vision, you topple over if you try to stand or walk too quickly and you have gone from being strong and able, to needing help with pretty much everything. You get frightened, angry, upset and confused without really knowing why. You get stuck doing the simplest things and have to be guided and supported to achieve the most basic and personal tasks. You have to surrender your fate to others and feel so completely out of control it is crushing. Then someone tells you that this is because you have been in an accident which has left you with a severe brain injury, it happened nearly a year ago and no one can say how much you will recover, only that it will be a life long journey.
Everything that defined you has either changed or gone. The rug you were standing on has been well and truly pulled out.
I don't know about you, but I'm not sure I would survive this experience. Not my Jake though. He is undoubtedly struggling; he's not a machine, but his ability to pick himself up and keep on trying in the face of such a huge mountain to climb is both inspiring and heartbreaking. He is so hard on himself if he gets it wrong or can't do something (which happens a lot) that my role has become one of cheerleader, coach, counsellor and, sometimes, just listener.
I try to be strong for him, but I get so angry and overwhelmed by how bloody unfair all this is and I certainly don't think I would be able to find the strength to use humour to manage my anxiety and be self effacing when I repeatedly make the same mistake. My Jake does though.
He is terrified but determined, frustrated but focused, devastated but resolute.
If all of the pride, love and respect I feel for my husband escaped from within me it would envelop the world and Felix Baumgartner would have been able to see it from his balloon!
I love you Jake.
Friday, 5 October 2012
My theory of relativity
It's funny how other people respond to your crisis when it's a whopper; they are very careful around you, they watch what they say and they play down the stuff they have happening in their own lives because, as they often say to me "it's nothing compared to what's going on for you and Jake".
Well I have a theory about this. Don't worry, there's no actual physics, I'm incapable. My theory is that shit happens (I know, I'm a genius). Wait, don't go, there's more! Shit happens to all of us and it is completely relative to the experiences we have had up to that point.
So just to recap; shit is relative.
Let me explain. Before Jake's accident my life experiences were pretty tame; crisis was missing a deadline at work, a house purchase falling through, or having a disagreement with someone I cared about. So my shit spectrum was quite limited. This didn't invalidate the feelings of anger, frustration, fear or heartache I felt; in the sphere of my experience they were extreme. Jake's accident increased my shit spectrum; this doesn't change how I felt about those old experiences, it just means my perspective on them has shifted. It certainly doesn't mean I don't recognise or care about your crises.
We all have the resources to deal with what we have in front of us right now and if it feels like a crisis to us then that's OK, so long as we dig into those resources, don't let it overwhelm us and learn from it, hopefully increasing our shit spectrum as we go.
So next time you are about to play down the things that feel huge to you in the context of your shit spectrum; don't. Shit is relative and yours is just as valid and important as mine, it's just different.
And if your shit spectrum is limited then be grateful because it means that life has been kind to you so far.
I'm expecting the funding for my PHD any day now!
Well I have a theory about this. Don't worry, there's no actual physics, I'm incapable. My theory is that shit happens (I know, I'm a genius). Wait, don't go, there's more! Shit happens to all of us and it is completely relative to the experiences we have had up to that point.
So just to recap; shit is relative.
Let me explain. Before Jake's accident my life experiences were pretty tame; crisis was missing a deadline at work, a house purchase falling through, or having a disagreement with someone I cared about. So my shit spectrum was quite limited. This didn't invalidate the feelings of anger, frustration, fear or heartache I felt; in the sphere of my experience they were extreme. Jake's accident increased my shit spectrum; this doesn't change how I felt about those old experiences, it just means my perspective on them has shifted. It certainly doesn't mean I don't recognise or care about your crises.
We all have the resources to deal with what we have in front of us right now and if it feels like a crisis to us then that's OK, so long as we dig into those resources, don't let it overwhelm us and learn from it, hopefully increasing our shit spectrum as we go.
So next time you are about to play down the things that feel huge to you in the context of your shit spectrum; don't. Shit is relative and yours is just as valid and important as mine, it's just different.
And if your shit spectrum is limited then be grateful because it means that life has been kind to you so far.
I'm expecting the funding for my PHD any day now!
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