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 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! youtu.be/0QAnut3dcUM
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Dorsetcharlie
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Having the person who you have given up everything for to support and who is supposed to love you unconditionally say hurtful things on a day to day basis is not very nice either AnthonyM. I cope with it because I know it's not really him and because I've retained some of my sense of humour. Knowing Jake a little better than you do, I can tell you that sentence would make him laugh; he would get the irony.
Oh Charlie that was so very lovely - not a dry eye from me either. Jake looked so very happy to be part of his friends' big day, what a wonderful way for him to be included in the proceedings. Thank you for sharing it with us.
Hi Charlie, I totally agree with you, I am very new to this site and only 5 months into my partners TBI and Hypoxic Brain injury. I have to daughters and together we do feel very isolated, just the three of us against the world!! People dont know what to say to us and how to deal with my partner, he is now classed as being in a persistant vegative state and unfortunately I think that scares alot of people, they dont go visit because they dont know how to deal with someone who you get nothing back from. I was warned in the very beginning that the offers of help and support will dry up and to take any help offered because in a few months that offer wont be there. I would love to get in touch with someone in a similar position to myself, all the people I meet at hospital seem to be parents of teenage children, not someone like myself trying to juggle home, work, mortgages and bills and bringing up an 11 and 13 with some sort of normality. Sending best wishes to you both x
Millie, so very sorry, you have so much to deal with! I am not in the same position as you but can understand a little - only in the way I am now towards my family since my SAH. My children are all grown up now - I look for them for support, which is very hard to accept but it has bought us closer in a strange way. I hope you find friendship and more help, the four of you are the most important but I do realise you need something more sometimes. Love & hugs, Linda xx
I don't have children sadly, but I can relate to the rest! There are some fabulously supportive people on this site and we are all here for you. Have you been in contact with braininjurygroup.org.uk? They are all wives of mothers of people in pvs and will be able to understand in a way that the rest of us might not be able to.
hope u ok tdy, once againe i missed this blog, i avnt watched the video yet ,but will do in a bit, gtta gt the strong coffee 1st, as im nearly cryin now b4 ive wtchd it .as fr jakes bluntness, i was like tht b4 ,n ive gt loads of friends,im a bit worse now but still gt loads of friends ,i have warned them that if something comes into my head or i dnt agree with something then i will say without even thinking,they alll laughedn said well u havnt changed much then lol, rght lets gt cffee on,
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