A perfect idiot

[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.

In response to my last post Missing the Fight a friend on this 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.

[at-spes-non-fracta]

Wow, a very well thought out post which I can so relate to. Selective perfectionism hey? Well, I think that applies to me also, or perhaps I just use it as an excuse for being lazy. No seriously, I am a bit OCD about a few silly things being done right, but if a jobs worth doing, et al. Unfortunately, there is no handbook for dealing with life changing "surprises" and all we can do, which it sounds like you are doing perfectly, is get on the best we can. The two annoyingly perceptive ones make a valid point though, as caring as you do is very demanding on resources but at the same time essential for Jake's well being.

Try not to over think things, time really is the greatest healer. Best wishes!

[cat3]

Oh Charlie -- you'll never be perfect (thank God) -- so does this mean you're going to stop trying ? I do hope so -- It's the only way to avoid total burn-out.

Maybe you could divert a little of that zeal to start meeting your own needs and if you've 'no idea how to do that' then I'm sure you will learn -- just as you did after Jake's accident.

You're pretty amazing, considering everything you've achieved. Love to you both. xx

PS I'm now stuck with this image of you with skirt tucked in knickers. ----- v.v.funny !

[cat3 in reply to cat3]

PPS. I know I've said it before but I seriously believe you need to get this story published, with no alterations or omissions. I know it's already online but I think it deserves the maximum attention of sitting on a Waterstones bookshelf or the Amazon site. Yes I'm sure you still have quite enough to deal with, but the hard part is done and the sequels are taken care of, with future blogs, which seem to come naturally to you. Please think about it, it really deserves to be 'out there' xx

[Hidden]

I recognised your blog immediately, de-ja vu. It was me.

I have researched, talked to experts in the highest places and all to fix my man and our future. I left work because I thought I could keep on fixing and that's where all of my energy went. Crucial in the early days when my man was seriously ill and then when he had PTA and an inability to search for the medial and rehabilitation care that he needed. But then he was out of medical danger and was able to come home.

My man is doing pretty well now after a serious bout of depression at Christmas and in some ways maybe I helped him find his purpose, or at least I like to think I did, but in reality he found his purpose himself but with a supportive partner by his side who would let him follow the purpose that he had found and gave him the space to do so.

One thing I did do was to develop a weekly planner for my partner so he knew that each day bought something to do and had meaning, something for him to work through, some purpose. It is a flexible approach that allows for times when fatigue takes over and to deal with the unexpected.

Somebody got me to step back and to look at the weekly planner and my role and asked me what about me, what I am I doing to recover from the most traumatic year of my life. I realised the answer - nothing. My role consisted of take David here or there, do this for David or worry about David OR sort the kids out or my mom out or organises something for somebody else.

So now we both have a planner, we spend lots of time with each other but time pursuing our own things too. Surprise surprise my man actually enjoyed the independence that gave to him and the space it provided from an over protective partner ha ha - I didn't realise he saw me in that way. Both of us are feeling a lot better now and I feel more like a wife again than a carer and we now spend more time talking about other things than the brain injury which had previously dominated our lives

Things will never be the same as they were, my man will never be the same as he was - I will never be the same as I was. But by stopping the continuous fixing and focussing on "living" our new life is helping us to move forward. Though of course I can never resist the urge to check out new research and expertise and people that know how it feels to be affected by brain injury in the family. I sometimes have to accept that there is no explanation for where we are and how the brain is now working - it just "is" and we live our lives in-spite of that.

I often read your blog and you and Jake inspire me and give me reason to believe. You are both fantastic people and I admire you both. You have done a wonderful job and you are so honest - you are a true inspiration for so many.

So listen to those words from headway "what about you and yours" because in taking a little time for you - you will never let Jake down you are his soul mate and what's more he knows it.

Thank you for your blogs you have really helped me as well as Jake

Love to you both x

[vwvanman]

We don't plan anymore we try to live in a structured way ,this sounds awful but if we try - Wednesday is change bedding day, Thursday is Tesco day , you get the picture if it makes things easier for Lesley then thats the plan ,we used to live from day to day, now with the help of the best carer we've ever had , we live from week to week , thank god for post-it notes .This is our thirteenth year so a quick fix is not an option its the long steady plod .

Hope this helps .

Stef