Losing the physical self

Friday night, I drive home with the now too familiar knot in my stomach, that’s a few times in a row now. I don’t understand why because it’s not that different from countless Friday nights pre 11/11. I used to feel so much lighter on Fridays and now I don’t really understand it. It’s Friday, it’s the weekend, psychologically it just makes the loss bite that little bit more. Maybe we should have got out of here so that we didn’t have the chance for our minds to make connections with those previous memories. We never really understand our own state of mind, it’s a law into itself, believe you me it’s best not to, happiness is something that just is, it’s a state of being, you just can’t manufacture it. Like love it’s just there and it’s best to soak it up while it lasts. Swings and roundabouts, you have to pay the price sometime. I always knew that’s the score, I always knew it would catch up at some point. You can only go for so long with the status quo but eventually you know something big is coming round the corner. Truth is I knew deep down a massive change was coming before Anita went into hospital, your intuition tells you. The thing is you can’t take a step back, you go with it, it’s best to drive yourself on regardless, use what you feel inside to get things done. My sheer bloody mindedness will never let me stop.

I remember those days back in the hospital, I would turn up for the ‘lets watch Anita take a battering show’ then come 8.00 it would be time for home again. I would drive back on my own with the occasional screaming into the night to let it out. Mentally screaming that is, every so often you need to let the pressure out. I doesn’t seem to go away, the occassional day when it it’s hard. I have tried to drink away the pain but I don’t even get affected by alcohol, it doesn’t even touch the sides. I hear a story, any story of someones troubles on the news, it doesn’t even cause a ripple on the surface of my emotions. Will I ever feel anything again other than pain, numbness and anger! I do have an excuse of course, I have seen the only person I’ll ever love on this whole planet be taken to pieces, medically and mentally. She’s so strong, I know she can take much more than others and that makes it easier. Poor me, I certainly don’t want sympathy because even though what I have just said sounds bad, it isn’t really that difficult. I know what I am suffering is a fraction of what Anita has to go through and I have the sure knowledge that it would take an enormous amount to dislodge me. In fact most of the time it surprises even me how easy it is, I think the secret is to love life and I hope that’s something that will never dry up. If you can see more in less and take more out of life with less then loss isn’t really that bad after all.

Well I’m entering the third week of ‘depression’ and feel like shit. I know this is all chemical, to do with the brain injury and I have to work through it, but I get so frustrated. The house is in upheaval at the moment as our garage is being converted and the poor builder had to toilet me today as I was desperate, I don’t know who was more embarrassed and think I have reached my lowest ebb, I have sunk so far! I used to have pride! I potter around the house no trouble when I feel fine, do the laundry from my wheelchair, make myself drinks, but when I feel like this, I might as well be catatonic! I just sit around doing nothing! I was ‘assessed’ last week by yet another neuro physiotherapist, I am sick of being assessed , I just want to get on with it, I feel all this assessment is wasting precious time. There is supposed to be plenty of time, but I don’t want to waste any more time than I have to in this chair. I know I can’t accept what has happened to me and it is affecting my recovery, but at least I continue to recover! My balance is better and I have more feeling in my arm and leg. It’s hard to focus on these positive aspects though and I get so frustrated at the slowness of everything. I just want my life back please! Now, I don’t know how much more of this I can take.

Howard can’t believe I got the builder to toilet me and I am so worried about him. He has no life, goes to work, comes home, toilets me if necessary, goes on his computer, helps me to bed and goes to bed himself. I know he finds this ‘depression’ hard to take and I worry that he will end up resenting me. I was once so free and independent, but now talking is difficult and I generally remain quiet! I get so ‘depressed’ I have physical symptoms, I feel nervous all the time and get panic attacks, the fear in my stomach is unbearable! I get suicidal, but am too much of a coward to do anything, I just want to stop this as I can’t stand it. I want to be an inspiration to other brain injured people and their families, but all they will get is this deranged ranting, which isn’t very inspiring! Bad things happen to good people all the time, why should I be any different? I just have to survive this and I will of course! It’s just so hard, the hardest thing I have ever done, which is why I must have arranged this for myself! All this is good for the soul, but bad for the body obviously! My body is ruined and I can’t get over that, I have a right sided facial palsy, my right eye is crossed and won’t close, so gets constantly infected, I am partially deaf in both ears, with constant tinnitus accompanied by a ‘whooshing’ sound. Speaking is hard, as is eating and drinking. My left side is numb and I have very limited movement in my left limbs. I also write like a drunken six year old! A lot to get right, who said I don’t like a challenge! The worst thing is the more ‘depressed’ I get, the more my physical condition worsens, so I can do even less and I get more ‘depressed’, its a self fulfilling prophecy!

During my recent illness and subsequet struggle to recover, I have not been contacted once by my so called relatives! My parents and sister have been great. as has my huband, but my relatives have not contacted myself or my husband during all this horror. They may not like my Mum, but that doesn’t stop them contacting me direct. They found out somehow that I was ill and stopped my Dad in the street and even then didn’t ask about me, just berated my Dad for not telling them about me! Even when all this was happening, their first thought was the effect on them! I just wish they would leave my parents alone! All this nastyness as well as the brain injury is unbearable.

My parents were burgled while visiting me dying in hospital, so I hope somebody reads this and feels guilty! No doubt they will get their karma back, but I would like to see it!

Good Friday the crucifixion of Jesus………

I feel I am letting Howard down by being so down in myself. He tries so hard to help me and I seem to have no enthusiasm for anything. I feel so miserable and sick the whole time, I feel like I am panicking, but nothing ever happens I feel a knot in my stomach the whole time. I hate it that the carers have to come, but the alternative is to manage by myself, which I cannot do. I feel so useless and vulnerable at the moment. Everything tries to batter me down and in my weakened state I cannot cope. I just want to curl up and die, which isn’t me! I had some good news this week from the facial place but even that didn’t cheer me up, I tend to focus on the negative and what I can’t do rather than what I’ve achieved. I feel so battered by life and things are getting worse when in reality they are getting better. I am out of the dreadful Rayners Hedge but I haven’t had formal physiotherapy since I left there, it looks like a cost I will have to pay. We will convert our garage which will give me more independence but I can’t be bothered to get involved though it’s all done to help me. The report from Rayners Hedge annoys me, it makes me out to be socially shy, which isn’t true. They know I go out, I even saw them all twice at the noodle bar. Please help me, I feel so pathetic. I just want to be like I was though I know that is impossible now. I feel so hopeless, I dread the carers coming tomorrow morning; though they are both very nice women who do all they can to help me. I hate that I can’t talk and write effortlessly like I used to. I feel my identity has been taken away and only a shell remains. I focus on not standing well and continue to have high expectations of myself. Even at this stage I am not euphoric that I can stand at all, just that I can’t stand for very long. I feel doomed and nothing is going well though things tick along and life goes on, but I feel it goes on around me and I don’t take part in it. I remember mundane things about our past, trips to Spain and France and miss what I was. I feel so alone, people try to help me but can’t understand the horror I go through. I try to cope but I feel I am failing miserably when I’m like this. I don’t feel very inspirational, I so want to be an inspiration to other people. I feel I just get worse and people will loose any tolerance and sympathy they have for me. I feel I only have myself to blame as I am not reacting very well to my predicament.

Last night I found a frog in the road, a car came by but incredibly it managed to miss it. There was a river nearby so I picked it up by the leg and threw it into the shallows, feeling good. The incident reminded of me of something I wrote down a long time ago on holiday in Greece. Below is what I wrote.

We are eating cheese pies for lunch on the terrace washing them down with copious amounts of ‘quality’ retsina as Lee Marvin (looking like he did in his cat bellou period) shouts a Kali mera whilst painting the terrace next door. Ironically spaghetti western music blasts from the radio although as far as I am aware he was never in one. Whilst this is going on I spy an ant trying to lift the largest pastry crumb on my plate. Being in ‘Greek mode’ I spend a long time in quiet contemplation watching his every move. The strong meltemi winds are making his cause very difficult so taking pity I break the huge crumb into two. Now totally distracted from the book I was reading I watch the ant as it continues its progress off the plate over the table top and down the table leg. The Greek house we are in is perched from the quiet road by a shear vertical cliff and I watch with amazement as the ant climbs down this 14ft wall to the road. It struggles manfully in the wind on the road one step forward, two back avoiding the cracks. Suddenly I am awakened by the sound of a pick up approaching. My mind quickly calculates the odds for the ant’s survival, it’s a wide road and the ant is tiny. Suddenly, unexpectedly I am left utterly bereft as the left tyre goes clear over the ant.

I start thinking if I hadn’t broken that crumb for him, bought that pie or if the boat trip we should have been on today hadn’t been cancelled due to the wind…………
Appropriately as I force myself to look at the book I was reading the chapter ends with ‘as long as I live,’ he said, ‘I’ll never understand it.’ ‘You never know your luck’.

It’s 1.45am. Up late, Anita shouting from her downstairs bed. She often wakes up in the night not making sense. She wishes to be sat up for some reason I can’t understand. I think she is only half awake. I notice blood on the pillow and check absurdly that it’s not coming from her brain. It’s just another accidental scratch to add to her bruised and battered body. In the hospital it was all I saw, a line always ran through my head (those broken bones in times of stones�). Like the bruises on her elbows life’s all black & white right now and has been for a while. All fight and toil. I lie awake and think of a photo downstairs, a close up of Anita on the ferry to Patmos, sun low in the sky warming her perfect skin. A settled smile on her lips that I’ll never see again. It doesn’t matter, it’s not something the soul needs, yet why do I still yearn then for a dash of colour.

One of the most difficult things about brain injury is the mental illness it can cause. Thinking back to the time Anita was on the wards I managed through my spiritual beliefs to take heart from most of the things I had seen there. That may sound odd but it is possible to find an incredible sense of peace, love and caring in these places. However one day I experienced something that messed with my head. There were two people in beds near Anita who had been affected cognitively by the brain injury they had sustained. I heard of a technique used by Darren Brown the magician who during a conversation will say something completely unexpected. That can have a huge psychological effect on an individual because it is not in the normal flow of the conversation. He uses it to manipulate people but something similar happens when you have a conversation with someone with memory problems. The conversation goes in strange directions that can play with your mind.

Although you see some gruesome sights on a neuro ward (like bits of heads missing) that never seemed to bother me, yet after engaging in conversation with two people who were cognitively impaired I found that shook me to the bone. I still find it very difficult to accept that brain injury can change you as a person. This is the sod that is brain injury, it is for this reason alone that it is like no other serious injury. Not just being changed through the result of experience but through alterations to your brain. Being someone who believes the soul is very separate from the body it starts to bring into question at what point the soul and ‘the person’ differ.

One of the patients near Anita was a young girl who had a husband and children who only seemed to visit occasionally. She had become very aggressive after her injury and constantly would try to get your attention. You could not help but feel incredibly sympathy for her condition yet because she was so difficult to deal with you could see the effect she had on people around her. The sympathy would eventually turn to contempt and although she could have been the nicest person in the world previously it would eventually lead to people hating her. This asks us all the question of how we relate to our fellow human beings.

Luckily Anita has avoided most cognitive problems, although that is not to say she has been unscathed (more on this in later posts). It is a fact that all of out there could sustain brain injury tomorrow and be a different person! People around us would suddenly have contempt rather than love for us. I found some facts about mental incapacity on the BBC website in a report today about ‘living wills‘:-

• Up to 2 million people in the UK are affected by lack of capacity
• More than 700,000 people currently suffer from dementia
• Ten to 15 per 100,000 suffer severe head injury each year
• An estimated 120,000 people suffer long-term effects of severe brain injury
• 1% of population suffer from schizophrenia at some time

Source: Department of Constitutional Affairs

Today we watched the film Shawshank Redemption. Anita was a bit low so I thought it could give her a lift. I would recommend it to anyone in need of inspiration. It has some great spiritual message in the film particularly if like Anita you are trapped. The guy is trapped in prison for life yet inside you can see he is smiling, because he has faith. He doesn’t ever give up. Morgan Freeman says

“Hope is a good thing, maybe the best of things and no good thing ever dies.”

Apparently people of all persuasions get something from the film, particularly Christians. I find this a bit odd because the evil warder is very much a bible basher! For me the spiritual side of the film comes out when the guy says

“Here’s were it makes the most sense. You need it so you don’t forget. Forget that there are places in the world that aren’t made out of stone. That there’s a - there’s a - there’s something inside that’s yours, that they can’t touch.”