Two years on...imagine that

[Dorsetcharlie]

Latest blog from: hopegoesupanddown.blogspot.com - a record of the hope, terror and unknown future faced when the one you love most in the world suffers a brain injury.

Today is the two year anniversary of Jake's survival against all the odds; sometimes it feels like a blink of an eye, sometimes it feels like a lifetime.

When I think about some of the drama, terror and bleak prognosis of the early days it seems extraordinary that we are where we are today (today will be a pyjama day followed by dinner at a favourite pub down on the Quay to celebrate, since you ask).

I thought that this milestone would be a good time to share what life is like now.

From the outside in I imagine our life looks pretty good in relative terms; we have a lovely new home, a civil claim that seems to be reaching a successful conclusion and the resources to get Jake the support he needs to continue to defy those early bleak predictions for his recovery.

On the inside life is challenging, complex and beset by a raft of what my leadership development colleagues would describe as 'wicked problems'.

The devil is in the detail you see; yes, Jake is mobile, doubly continent, eating a normal diet, communicating (to a degree) and able to access a wide range of activities. We go out, laugh often and have each other. So on the surface it all looks pretty good right?

Wrong. Imagine for a moment, if you can, that you are terrified of anything new and your short term memory deficits mean that most experiences feel new, even if you only did them last week. Then imagine that your confidence and self esteem are on the floor. Then imagine that the bit of your brain where the ability to motivate yourself is damaged. So far, so tricky.

Then, imagine that you have been supported to capture and access your memories of successful past experiences, which helps you to overcome your lack of confidence and to motivate you to actually want to do something...and then imagine that the part of your brain that enables you to initiate, that is to actually get started, is also damaged and despite everything you hit a new wall. Add to this difficulties in managing your emotions and the behaviour they trigger and the complete and utter exhaustion you experience after even the simplest of tasks.

Then imagine that both your understanding and expression of language is so severely impaired that you can't properly express your fear, frustration and humiliation or understand much of the reassurance or support those around are trying to give you.

Then imagine that you are a 43 year old man who is only just beginning to understand that he has a brain injury, that life will never, ever be the same and for whom each day is a mountain to climb, even if all he has to do is get up and dressed.

To quote Winston Churchill, "It is a riddle, wrapped in a mystery, inside an enigma".

So yes, from the inside things are tough...and yet...and yet, two years is such a short time in brain injury recovery terms. We have a new psychologist who is working with us both and has already had a huge impact after just two visits. There are many strategies and work arounds that we have yet to explore that could help us to start to unpick some of these problems. We are getting a puppy (very exciting...assuming you're not one of our cats of course!) who will hopefully be a one dog motivation and purpose machine. We are starting to make meaningful connections with people in the same predicament locally which gives us both a sense of not being in it alone.

We went on holiday recently with SIL, Jake's best friend and his wife and a long time family friend which was a massive success and gives me real hope for future trips (I'm not sure I'll ever be able to thank them all enough for giving up their precious holiday time, leaving families and loved ones and making what felt like the impossible real). So there is definitely still plenty of opportunity for hope to continue to go up.

If I could ask for one thing at this moment it would be for us to see more of Jake's pre-injury friends; every book out there about brain injury highlights this as an issue and we do understand that there are very good reasons why this happens. When Jake was in hospital his friends were amazing, but in reality I benefited more from that than Jake and it is now when he is wrestling with his identity and feeling lost that he really needs you. Please don't feel pressured, just give it some thought and know that there is an open invitation anytime.

830 days in and in many ways we are incredibly lucky. Jake continues to be gladiatorial, inspirational and brave. His courage and stoicism takes my breathe away I love him more every day.

It has become a routine for us to lie in the dark each night talking about what has happened as Jake works it through, grieves for what he has lost and comes to terms with his future. Last night my extraordinary man moved me to tears yet again by declaring 'I can do it...I'm going to win'.

Imagine that!

[bikerlifestyle]

you have an amzing way with words, i wish o could express my circumstances so well, so well done you both and keep up the fight

[Dorsetcharlie]

thank you Mark x

[pollyanne]

Very eloquently put and yet another milestone!( we are six months behind you.) Its like going on a marathon and we have just gone past the first bend-a long journey not knowing who or what is going to happen on the way or which of the other runners are going to get sidetracked! totally agree about 'friends' who have dissappeared but the ones who have 'hung on' in there are true friends. Yep! life is different and not as we thought it would be but we are still here-thank god!! x

[Dorsetcharlie]

Yep - still talking and breathing as Jake would say!

[cat3]

Thanks for the update, Charlie. You and Jake should be really proud of yourselves when you look back over the past two years........did you honestly believe you would be where you are today.........I wonder. Although it wouldn't surprise me if you HAD believed it, having been the driving force throughout the whole obstacle-ridden ordeal, like a force of nature. You must have been bone-tired at times and despondent but you never gave up on your commitment to Jake's welfare and I have nothing but admiration for you, and for Jake too.

I really hope that some of Jake's pre-injury friends get back in touch but, if not, then (as you once said) there will be NEW friends and NEW memories.

In your case, if love hasn't conquered all............it damn well should've done. But of course there are many more chapters to come..............

Sincere best wishes to you both. Love Cat xx

[vwvanman]

We are at year 13 , well done you pair yes its tough .We were very lucky enough to have a fantastic OT called Steve Jones, he gave up his spare time to give me some insight into coping with the after effects of SAH ,this allowed my wife to come home after several months in rehab .Every day is a bonus every day is a new day.

Keep smiling and good luck to you both .

Stef

[trippedup]

This is the first time I've come across your blog and and thought-inspiring reading. My Mum had a stroke on Xmas Eve 2011 (nice timing) and is now in a residential home while my life is on hold. It IS starting to move forward a bit now but there are 2 things I can relate to most. First, having to argue with authorities (of any kind) to get what you want/need/are due therefore often ending up being and visiting not as simply a daughter but also a lawyer, advocate, therapist, entertainer, etc., etc. Second, the amount of friends/family who "disappeared" after about a year. When Mum was virtually comatose in hospital, they thronged around - just when she didn't want/need them but now that she's immobile and in a home, this is when she needs those people (and so do I so that I know she's getting visitors other than the bog-standard ones of me, my aunt and uncle and a small handful of others). But I can hardly get on the phone and MAKE them visit (and they're not online so they're not going to accidentally come across this blog). How are you handling that side of things, if you don't mind me asking?

[dillyd]

Thanks for your wonderful blog, We are still at early days, only 4months since my husbands injury.

He has just returned to hospital after his second home visit.The ist last week was not so good, today amazing. Everyone kept telling me it was too soon, but hopefully I have proved them wrong. We have always been so close & he keeps telling everyone he NEEDS ME!!.

I empathise with the battles you have to fight all the time. When I should be concentrating on my husband, I'm fighting battles with the so called experts to get what he needs.I find that more tiring than anything!!.

Again, friends- We have some amazing friends that have been so supportive, quite often unexpectedly. Others, you thought you could count on seem to disappear off the face of the earth. I'm not very good at asking for help, but found sometimes I have too.

Trouble is one refusal & you feel you can't ask again

Dick is alive- I know he has a long way to go & things are still going to be hard. Life will never be the same again, but hopefully still good, just different.

This forum is amazing!!. It's helped me through many long days & nights, keep writing everyone xx

[canary64]

Really great to read your update Charlie! I've read your blogs with admiration and interest, a huge well done to both of you. I can so relate to everything you describe, especially in relation to Jake's difficulties, the complex cognitive issues are the one's I find friends/family do not understand. My own partner was discharged from hospital last month (at my insistence due to disatisfaction with rehab). It's certainly a roller-coaster ride, but littered with laughter!

I hope things continue to improve for you and Jake as I'm sure they will x

[iforget]

Your blog is inspirational and I am always glad to read an update. You guys have come such a long way and every step seems to be have been paved with love and determination.

I can identify with the complex cognitive issues, the friends and socialisation issues etc. Seven years in and we are reliant on strategies which when they work are incredibly helpful...and when they don't the crash is spectacular. We try to learn from each occasion.

What we have now largely works FOR US...although things are way more settled than a few years ago they are not standing still, we are alive and so we grow.

Wishing you both years of happy growth together xx

[trisi]

Wow, the pair of you are doing so well and it gladdens my heart when I remember reading some of the earlier, scarier blogs when you both endured more than anyone should ever have to in a lifetime. Col and I are are almost at the 18 month stage and everything from the outside looks great BUT so many things you say resonate with me- especially the chronic lack of confidence he suffers and the mysterious absence of some long time friends who I thought would be there for him but seem unable to cope with this 'new version' of their old mate. He can't drive or work yet and because his benfits are means tested, he can't move in with me as I don't earn enough to support us both so life is a constant juggling act of managing my own house (complete with lodgers) and making sure Col's ok. I am not moaning as I am so proud of him and how far he has come on but nobody really understands the day to day things he deals with. Please keep posting your updates as I think everyone who uses this forum will be so happy that you are slowly getting there and the picture in the pool is just wonderful.I have found we have some wonderful 'new' friends that we didn't previously know well as a couple but who seem able to accept Col (and his regular innapropriate comments amongst other issues!) and are happy to share our company and support us which is a blessing x

[Dorsetcharlie]

Thanks folks - who knew there could be so many of us living in brain injury land wading through the same treacle!