So, to catch you up on all that has happened since my last post. If you remember, Jake had just had his shunt revision operation following a shockingly bad first hand experience of the ineffective communication and organisation rife some parts of the NHS.
Well, I'm afraid things didn't improve. If you possibly can, avoid Southampton Hospital. Seriously.
At no point after his operation did a Dr of any kind come to tell us how it had gone and what we should expect. Jake was finally moved to a medical ward in to a bed with someone elses name and dietary requirements above it until I arrived and pointed it out. He was then held captive on this ward, where no one had read his notes (again) for three days. This meant that, despite me telling them every time I came in and the sign I put above his bed spelling it out in capitals, they kept calling him by the wrong name that no one ever calls him (it's complicated but Jake is actually Jason). They alarmed his bed to stop him from getting up and walking about and then gave him anti-coagulant injections in his stomach every day because he was immobile; madness. And all this because they were fixed on sending him back to Poole 'rehab' rather than home as he was 'still very confused, aphasic and unsteady'...you know, those chronic conditions that are normal for Jake which they would have known if they'd just READ THE BLOODY NOTES.
I called the Poole brain injury registrar Dr King (who is lovely) first thing on Monday morning and agreed with her that there was no reason for Jake to come back to Poole hospital and, so long as she could get the OK from the registrar at Southampton, Jake could be discharged straight home with me, not least because he was going insane being trapped in a bed all day. This would have been great if the registrar at Southampton could be bothered to return Dr King's repeated calls. He couldn't.
As the advocate of someone like Jake you sometimes have to make yourself a massive pain in the arse and this was one of those times. I arrived at the hospital at 3pm and announced, in my most friendly but definitely not to be trifled with voice, that I would need to see the registrar immediately as, having had the OK from Jake's Consultant, I was planning on taking him home that afternoon and I would really rather prefer to do it with their blessing. Ha ha ha, apparently that's the magic phrase to make the Dr appear. Not in person of course; like the undead, Drs at Southampton cannot be seen in daylight and can only communicate through their earthly underlings (the nursing staff). Anyway, approval was gained and there was much running around getting discharge papers printed and signed. The only wrinkle being the physio who wasn't initially happy to OK the discharge as Jake was still 'very unsteady and drifting to the right'; good work Sherlock, this is because he has ataxia and right hand side neglect which you'd have know if you'd just READ THE BLOODY NOTES.
So, finally sprung from Southampton and safely back with his much missed furry idiots, Jake carried on, oblivious that we were all holding our breath waiting to see what impact the shunt revision would have.
The road to recovery in brain injury land is never a smooth one and the next couple weeks saw Jake battle a stomach bug, infected wound site, ingrown toenail removal, a resurgence of the constant vomiting issue and the reality of what happened 20 months ago finally dawning on him. Worst of all, after 8 months seizure free, a full tonic clonic seizure last Tuesday.
And yet, in the midst of all this discomfort, illness, confusion and fear, my extraordinary husband has retained his sense of humour and, more excitingly, regained a level of recovery not seen since Christmas. It seems the shunt has been failing for some time! On top of that there are signs of even further improvements in his language and understanding, mobility and independence. Bloody brilliant.
Not wanting to take the wind out of anyone's sails, but it's important to manage expectations and it is worth pointing out that, although amazing, all these things are relative. Our Jake is still a very damaged man. He is profoundly dyspraxic, aphasic, ataxic and dysphagic as well as suffering from memory and executive functioning issues. That said, he never gives up and has already exceeded the expectations of every medical and rehab professional he has encountered and life is so much better than we were led to believe it would be.
So hope continues to lead us on it's merry dance; it's a good job we like dancing...ish.
Sunday, 23 June 2013
Friday, 31 May 2013
The fear
You know that moment when you've been trying to prise the lid off something and suddenly it pops off and the contents go everywhere? Well, that's what happened on Wednesday morning.
After literally weeks of banging on that things were 'not quite right' and sending countless increasingly 'direct' emails, we got a call from Jake's consultant at 9am to say "I've reviewed the latest CT scan with a Consultant Neuro Surgeon, this needs to be dealt with today, there is an ambulance on the way". Gulp.
First thought; good. Second thought; oh God, here we go again. Third thought; how the hell am I going to explain this to Jake through the fog of aphasia and hydrocephalus? Fourth thought; I should get out of this towel before the ambulance arrives!
After literally weeks of banging on that things were 'not quite right' and sending countless increasingly 'direct' emails, we got a call from Jake's consultant at 9am to say "I've reviewed the latest CT scan with a Consultant Neuro Surgeon, this needs to be dealt with today, there is an ambulance on the way". Gulp.
First thought; good. Second thought; oh God, here we go again. Third thought; how the hell am I going to explain this to Jake through the fog of aphasia and hydrocephalus? Fourth thought; I should get out of this towel before the ambulance arrives!
Thankfully the ever calm and generally amazing Keeley (Jake's primary carer) was there and took us both in hand with her usual air of quiet competence and we arrived at the emergency admissions ward at Poole Hospital at 10:00am. Jake was now 'nil by mouth' and the registrar assured us that we would soon be transferred to Southampton Hospital for emergency Neuro surgery and we were looking at this all happening "in hours rather than days". All very scary...all very exciting. Getting the shunt fixed meant getting Jake back on track.
Another CT scan was quickly done and sent over to Southampton and then we waited...until 6pm when the ambulance finally arrived. On arrival we were admitted to the Neuro transitional unit and waited for Jake to be admitted and assessed.
At this point it is important to stress that I think the NHS is utterly amazing. The support, care, expertise, investment and understanding we have received over the last 19 months has been truly amazing.
Southampton, however, did not fill me with confidence. It took 90 minutes for someone to come and check on Jake who, as sister in law said, is an emergency admission and could have been dead for all they knew.
A 9pm we were finally seen by the registrar who was a very pleasant chap who seemed to know his stuff, which was all very comforting for the first ten minutes, up to the point when he said "has he had a brain injury before?", quickly followed by "what's his name?". He knew NOTHING about Jake's severe brain injury and clearly thought he was dealing with a straight forward case of organic hydrocephalus. Having put him right and filled him in on the last 19 months SIL and I did our best not to communicate our belief that he was as capable as a mummified slug and off he went to read the notes...yes, that's right, he hadn't read the notes.
Back he trotted with the news that Jake was now "first on tomorrow's emergency list" and Jake was finally allowed to eat and drink something at 9:45pm after 13 hours nil by mouth.
Meeting for breakfast in the hotel the next morning SIL and I were feeling positive that Jake would soon be in theatre and all would be well. I called the ward at 8:30am to see if he'd gone down yet (having learnt the hard way, SIL and I do our best to ignore the whole 'sitting outside of a theatre watching the minutes crawl by' scenario and had planned to get there after he had been moved to recovery). You can imagine my confusion when I was told that 'he's not on the emergency list anymore, they'll get to him today if they have time".
Hang on, how can he be rushed in as an emergency case with the consultant Neuro surgeon insisting it needed to be dealt with immediately and then suddenly no longer be that urgent despite worsening symptoms? This sounded VERY wrong to me, so out came the warrior wife armour and SIL and I planned our strategy for 'helping them to reconsider'. Cutting a long, distressing and often fraught story short, we got the consultants to communicate and we were back on track for surgery on Thursday.
Of course, during this time a very confused and frightened Jake was lying in a strange ward, not allowed to eat or drink for two days and not really understanding why he was here. He was amazing and coped unbelievably well, of course.
Finally, at 6pm yesterday, I held my Jake's hand as the anaesthetist sent him off to sleep and he was wheeled off into theatre. SIL and I then had the joy of what is absolutely the worst bit, the waiting. Much coffee and tea is consumed and much banal small talk is half heartedly made.
At 7:45pm he was taken to recovery and at 8:45pm we got to go and see him. He was very groggy and uncomfortable but seemed to know us, so we reluctantly headed back to the hotel to eat...and drink.
Emboldened by too much wine I broke my own rule and called the ward at 10pm, 'just to check'. What I hadn't expected to hear was "he's fine, sitting up in bed having a cup of coffee, would you like to speak to him?". Err...hell yes!
Gladiator Jake had done it again "is that my wife?...hello wife" said he, "bloody hell" said I!
So this morning we start again with hope going up and hopefully I'll be able to get he chorus of Lilly Allen's 'The Fear' out of my brain and replace it with something a little more appropriate, any suggestions?
Friday, 24 May 2013
Still here
I realise that it has been over 3 weeks since my last blog post.
Many of you have contacted me recently to check I'm OK, so I'm sorry if I've been a bit under the radar and thank you for all being so lovely.
When I started to write this blog its main purpose was to enable me to keep people informed at a time when I was too overwhelmed to talk. Over time it became a welcome outlet for the dizzying range of emotions and challenges that having a brain injured husband brings.
Recently it has started to feel as though it doesn't belong to me anymore, but rather is a service I provide to others. I get that this is inevitable to a degree, but I got to the stage that I felt that I HAD to write it, rather than wanting to; it became a chore.
Add to that the roller coaster of events recently, both good and bad and I'm afraid I withdrew, battened down the hatches and waited to feel ready to write again.
I'm going to give it a go today and I suppose the best thing I can do in this blog is to update you on the last few weeks.
It all started to go awry on the 1st May with the news that a major London newspaper had picked up Jake's story from court papers and were going to run it the next day; did we want to comment? This is absolutely the last thing we wanted and our solicitor stepped in and we hoped that it would run and then go away. Which largely it has, with the minor blip of a bloody cheeky journalist wandering into our back garden to see if I wanted to comment as 'it's all in the public domain now Mrs K'. Snotty cow, off she went, with a flea in her ear!
That weekend we went to stay with friends where there was some much needed silliness. It also saw us take Jake to a charity in Bushy Park that provides a wide range of companion bikes and trikes to see what would happen. I went without expectation, as the nature of Jake's accident and his lack of confidence meant that we didn't know how he would react. Well, he surprised us all by hopping on a trike and peddling off, albeit very ungainly and slowly. Bloody brilliant! You'll never guess what we're getting him for his Birthday next week?
There have also been some concerns about Jake's health which has seen trips to A&E, finding him dazed, confused and bruised on the bathroom floor in the middle of the night and the regression of both physical and cognitive abilities that culminated in a CT scan and other tests. The upshot is that his VP shunt has an intermittent fault which means that he is experiencing occasional recurrence of the hydrocephalus that kept him in a minimally conscious state for the first few months of his recovery. This will require the replacement of some or all of the shunt and although I am glad we have an answer and a plan, I am gutted that he will need another surgical procedure.
Other notable events have included a bout of man flu (Jake's not mine!) and a failed attempt to take Jake off the anti-emetics. As a friend who saw the results first hand commented, it was like "a Roman banquet at half time". Life in brain injury land is certainly never boring!
That said, there is much to look forward to, with contracts due to exchange on the new Korving Towers next week and Jake's Birthday BBQ on Sunday; even the weather forecast seems to be on-side.
That's it for now; I don't know when I will blog again, but I'm bound to at some point, so bear with me!
Many of you have contacted me recently to check I'm OK, so I'm sorry if I've been a bit under the radar and thank you for all being so lovely.
When I started to write this blog its main purpose was to enable me to keep people informed at a time when I was too overwhelmed to talk. Over time it became a welcome outlet for the dizzying range of emotions and challenges that having a brain injured husband brings.
Recently it has started to feel as though it doesn't belong to me anymore, but rather is a service I provide to others. I get that this is inevitable to a degree, but I got to the stage that I felt that I HAD to write it, rather than wanting to; it became a chore.
Add to that the roller coaster of events recently, both good and bad and I'm afraid I withdrew, battened down the hatches and waited to feel ready to write again.
I'm going to give it a go today and I suppose the best thing I can do in this blog is to update you on the last few weeks.
It all started to go awry on the 1st May with the news that a major London newspaper had picked up Jake's story from court papers and were going to run it the next day; did we want to comment? This is absolutely the last thing we wanted and our solicitor stepped in and we hoped that it would run and then go away. Which largely it has, with the minor blip of a bloody cheeky journalist wandering into our back garden to see if I wanted to comment as 'it's all in the public domain now Mrs K'. Snotty cow, off she went, with a flea in her ear!
That weekend we went to stay with friends where there was some much needed silliness. It also saw us take Jake to a charity in Bushy Park that provides a wide range of companion bikes and trikes to see what would happen. I went without expectation, as the nature of Jake's accident and his lack of confidence meant that we didn't know how he would react. Well, he surprised us all by hopping on a trike and peddling off, albeit very ungainly and slowly. Bloody brilliant! You'll never guess what we're getting him for his Birthday next week?
There have also been some concerns about Jake's health which has seen trips to A&E, finding him dazed, confused and bruised on the bathroom floor in the middle of the night and the regression of both physical and cognitive abilities that culminated in a CT scan and other tests. The upshot is that his VP shunt has an intermittent fault which means that he is experiencing occasional recurrence of the hydrocephalus that kept him in a minimally conscious state for the first few months of his recovery. This will require the replacement of some or all of the shunt and although I am glad we have an answer and a plan, I am gutted that he will need another surgical procedure.
Other notable events have included a bout of man flu (Jake's not mine!) and a failed attempt to take Jake off the anti-emetics. As a friend who saw the results first hand commented, it was like "a Roman banquet at half time". Life in brain injury land is certainly never boring!
That said, there is much to look forward to, with contracts due to exchange on the new Korving Towers next week and Jake's Birthday BBQ on Sunday; even the weather forecast seems to be on-side.
That's it for now; I don't know when I will blog again, but I'm bound to at some point, so bear with me!
Monday, 29 April 2013
A perfect idiot
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.
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.
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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