Losing the physical self

Anita is still in bed when I arrive at lunchtime. The first thing she says to me is ‘help me’. It seems to me that she is as depressed as she was before Christmas. However, unlike what I have seen in the last few days, there is a glimmer of hope because she is suffering severe back pain. Maybe if she can get rid of that her will to live will improve. Many lines of discussion are set to achieve nothing so I read her one of my chapters from one of the books I currently have. Kafka on the Shore by Haruki Murakami has an absolutely exquisite chapter in it, it’s the bit in the library that (spoiler) the boy reveals his body is female but his mind is male. It addresses discrimination but moves on to talk about something that resonates with me so much more.

So I think I’m as concerned about fairness and justice as anybody. But what disgusts me even more are people who have no imagination. The kind T.S. Eliot calls hollow men. People who fill up that lack of imagination with heartless bits of straw, not even aware of what they’re doing. Callous people who throw a lot of empty words at you, trying to force you to do what you don’t want to…When I’m with them I just can’t bear it, and wind up saying things I shouldn’t…Of course it’s important to know what’s right or wrong. Individual errors in judgment can usually be corrected…But intolerant, narrow minds with no imagination are like parasites that transform the host, change form, and continue to thrive. They’re a lost cause…

We decide to get her up in the afternoon but what soon becomes clear is that she is in absolute agony. As I wait outside while they get her up I listen to her screaming even from the far end of the corridor. This goes on for what seems longer than the 15mins. In a place like this screaming is to be expected so I am concerned they don’t fully realise the physical agony she has. She is a tough cookie and doesn’t normally show pain easily and I haven’t seen her like this since the trigeminal neuralgia. In her chair she screams in agony and it doesn’t stop when they put her back to bed. I hope before too long they can get a doctor to give her something much stronger. Back in bed I pile all the blankets on as she lies shaking and shivering. She tells me that her body is only a set of clothes and she wants a fresh outfit.

The private psychiatric hospital is only 30 mins from home. She has her own room and first class food. At least being segregated should help stop the infections. On my first visit I arrived to find two nurses permanently by her side, a reminder of why she is here. It kind of freaked me out, she is supposed to have them at all times. All the staff are friendly and very helpful.

I have had to go through and review some of what has been written from the last few days. I have been made aware that I have to use caution when writing in a difficult environment such as intensive care. I have become numb to many of the things I see and even when I see something that cuts deep I have to be careful with the power of words. There is always a risk when practicing complete honesty, you could hurt someone, that’s the last thing I want. The difficulty is that often the worst situations can inspire us the most.

I open the quote book:-

Truth does not change
although your perception of it may vary
or alter drastically.

- John and Lyn St-Clair Thomas

Everything
I do and say
with anyone
makes a difference.

- Gita Bellin

Today is my 40th birthday, when life begins. Anita tells me that she just got the kitchen knife out and thought about stabbing herself through the chest. This has surely been one of the worst days of my life. We spent about 2 hours waiting around Addenbrookes hospital to be told in a few minutes that Anita’s smile can’t be rebuilt. They will be able to do some surgery to improve the balance around her mouth but there isn’t any movement in the nerves of her face to take it further. To go back, yet again, to a hospital that will forever be burned into my conscience.

I took the day off, originally not to celebrate my birthday, but so I could have time to myself. The rest of my day has to be spent looking at legal papers and sorting out an ILF form. The thing is that all this effort goes in and it all feels so pointless given the almost complete lack of Anita’s will to live. She also has to deal with the fact that she can no longer have 100% of me; a large part is living another life. I would like to have at least gone out for a meal or something, but I can’t actually sit and listen to what she has to say. My threshold for how much is too much is becoming lower and today is another day when something else has broken forever within me. I am very worried that all this is draining what I feel for her. First to go has been my attraction to her, what is next?

After a recent stay for Anita in hospital, the continual process of visiting and leaving started to bring back old memories. I created some images and words that reflect that period, the words are not all meant to be sad.

Anita has been an inpatient in hospital for over 2/3 of the last two years. All her hospital stays have added up to around 16 months. As we come around to the anniversary (11/11/03) of her brain injury she may again well be in hospital. She is currently in the eye hospital, her eye appears to have got rid of the ulcer but due to the braking of her hip there will need to be discussions about care needs before she returns home. Clearly her transfers are more difficult and she will require more help, they will meet on Monday to discuss.

All that time in hospital, hospital visits, it’s either good for the soul or a wasted life depending on your inclinations. Wha’ts the alternative anyway, to lead a normal 9 to 5 life, no prods to the soul! Both of us have always judged ourselves by some kind of internal assessment engine. No matter what people tell you, both of us have a predilection for making up our own mind. Therefore it’s a good job we have this internal voice otherwise we would be in trouble. What that means is that whatever other people say is right or wrong, we have our own expectations and guidelines to live up to. This can be a good thing because people tell you ‘you are doing well’, ‘you are a good person’ when quite plainly by your own standards, you are not. In our minds right now we are not doing a great job of handling things. If the ambition is to be even a slightly advanced soul then you find yourself always questioning your motive and actions. I have tons of self love but don’t even come close to my expectations of a higher self.

One thing is sure we are enormously mentally affected by what has happened. It’s one of those things we may look back at in a few years and think, wow I was totally fucked up then. What does it actually mean to be of sound mind anyway. What is thought of as normal can be robotic, highly influenced by the society around us. It can frighten most people to think about what’s going on in their heads, we are all a little fragile and the slightest change of balance can get to us. So all this tragedy gets fed into the old head computer and behind the scenes who knows what sort of brain conditioning is going on. The other day I watched the Wim Wenders film Paris, Texas and (yes I know it is very very slow) I could really identify with the Harry Dean Stanton character, Travis’s missing years. He returns to the real world after several years in some sort of wilderness, living out his pain with irresponsible oblivion. There is not a day that goes by that I don’t feel like making a similar trip.

I wonder if the people that make the best carers are ones that are emotionally needy. Having someone making them feel like they are needed can be a tremendous boost to their lives. I don’t want to appear horrible because a good care giver is a phenomenal person and to give yourself up to help another is surely one of the best things you can do with your life. Unfortunately I am a selfish sod who sees freedom as one of the most important parts of my life (Anita also) and I don’t like being told what to do by anybody, even if it comes from external forces. I have purposely cultivated a lack of responsibility throughout my life only to be given some, like it or not.

I feel like I am becoming more and more de-sensitised to life that goes on around me. This is now what I call my robotic life, reacting less and feeling nothing. I think part of it comes from seeing Anita taken apart piece by piece in the hospital physically, and at home, mentally. I guess what I am felling is fairly natural. I must have buried my real self deeper and I am going through the motions of life in a much more detached way. Often that’s the best way, because the times that I feel are the hardest for me are usually performing domestic tasks. They are not that hard physically but it’s a mental thing. If you are weakened by this, or show signs of struggle, or become nasty to the one you are caring for, then you are making it miles more difficult for them and they don’t deserve that. I occasionally find myself getting very wound up and frustrated when carrying out the most basic of tasks. You feel most fed up when doing stuff that makes life a drudgery. You can easily find yourself becoming listless and it’s very easy to do absolutely nothing. You end up sitting in silence because you just can’t do the things you need to. It’s a new phenomenon for me because I have always been very driven and liked everything nice and tidy. Maybe I have realised it doesn’t matter that much anymore but at times it does, for example Anita keeping up her exercises.

The support you can get from support carers is essential. Any initial discomfort of having strangers in your life is soon outweighed by just how difficult it is when they don’t turn up. Let me pay homage to Anita’s carers. Yes there has been many occasions recently when they haven’t turned up, particularly for domestic help. It can be very difficult when this happens but without them at all life wouldn’t be worth living.

When you partner becomes disabled, to a large extent you can lose your mental and emotional prop in life. Physically you end up with everything to do yourself, and no matter how hard you try not to let it, at times this can make you angry. Every time you lose control like this it feels like you destroy a little bit of yourself and are failing in your life.

In the past I would always have been able to help Anita and she would help me. There was always a nice balancing act, when one was down the other was up. We always realised we are separate souls with our own mission to fulfill and we didn’t need each other to justify our existence. Now we have our own battles to fight and we have never felt as solitary as we do now. We have been cast in our roles of carer and cared for; these are not just ill fitting suits but perfect incarnations of what we hate most. Maybe it would have been easier if it was the other way around but that’s not the point, is it?

I feel my own difficulties are only a mere scratch compared to Anita’s but I can only express my own thoughts, I am sure there are lots of people with similar difficulties who will understand them. I remember back in the rehab hospital, it was pointed out to me with future support I would be able to have a relationship with Anita that wasn’t about being a carer. Let me make this absolutely clear, in these situations you are going to be a carer for life unless you leave someone. I guessed that then, and I certainly know it now. The yin yang of a relationship will undergo a seismic shift, no matter how much you love someone your relationship will change forever, you will be carer and cared for, whether you like it or not.

One of the nasty things that happens when you are forced to become a carer is that it can actually set you against the person you are caring for, the person you love most. If you want things to be easier for yourself it often seems you have to take from them. It feels like the most honorable thing to do would be to surrender your life and care for them completely because you love them so much. The most likely option is you come to an arrangement of give and take. It’s a horrible arrangement however if you have previously had a close and complementary relationship. The survival instinct divides you into your two separate roles, causing potential alienation.

I have previous experience with grief, it never leaves you, but you can put the emotion to positive as well as negative uses and also things generally get easier over time. Both of us are grieving for something we have lost. We have to survive the difficult periods, the daily loop containing an unimaginable sense of loss and hope that it does get easier. It’s a different loss to when someone dies, this pain is slower, longer and has regular loops to it. We have lost an almost guaranteed period of future happiness over the coming years. In a little more than 3 months we will be coming up to 2 years after the brain injury yet I feel we probably haven’t reached the bottom yet.

One thing that didn’t help these feelings was putting lots of our old photos onto flickr. I felt it was important for people to get a better sense of who we are, and what we have lost. However I wouldn’t recommend it to anyone in a similar situation, in fact the smartest thing would probably be to burn the lot without looking. Rule number one is don’t live in the past, to look at the happiest times of your life at a time when you are hurting is akin to hanging, drawing and quartering your emotions. Maybe I am a masochist or something but the time it takes to scan an old photo is way too long. It is good to celebrate the good times in your life but part of me thinks that the past may be better forgotten so we can live in the moment.

Rather than doing things like this maybe the sensible thing would be to go to counseling instead. I don’t need to talk about it thank you, I already do, to anyone who will listen. I guess I can sound like a broken record at times, boring the hell out of people, but when has that ever bothered me. It’s not like there is this mass of stuff being held in that needs releasing in counseling sessions. I need to deal with things in my own bloody minded way. The other thing is to go to meetings and join groups but the thought of spending my precious times at some of these meetings I get invited to fills me with dread. Maybe it stems from previous employment but meetings that are self congratulatory without achievement are one of my pet hates. The thing I have found that helps me most is just to actually keep busy and get on with stuff that I enjoy. Over doing stuff could potentially cause problems but for bloody minded people it’s a necessity, you can be sure as shit if you do nothing you are lost.

Although the prospect of happiness seems forlorn at the moment, we are two lucky people who have had lots of the elusive stuff in the past. One way of looking at it is whatever happens we will definitely have had an experience. Surely life needs change, there has to be suffering and you can only do a good thing for so long anyway. As long as I occassionaly continue to get that warm feeling inside, that love of life, then I know I will be OK. I just hope one day Anita can feel the same.

When I was a young child I remember looking out of the window during a storm and watching a neighbors house being struck by lightning. I remember looking right into the eye of the bolt the moment it struck, I find it difficult now to visualise exactly how it looked. I remember that it was some kind of fireball outside the limits of my imagination. I recount this episode because when bad things happen to you in life they can also take you to this place, somewhere that is beyond words or vision. It is possible that a door can be opened and you can go to a place deeper inside yourself than you thought possible. Unfortunately in this post I am not referring to the beautiful pure white calm but the exact opposite. Both take you to a place beyond your control, but this will demonstrate fragility, hopelessness and a sense that life can take you much further than you ever thought possible. I can’t really describe it more than this but only that those people out there who have seen it up close will understand.

I had to write about the recent bombs in London, but the people who committed these atrocities are murderers, pure and simple, not terrorists or extremists.

All murderers justify themselves, its an ego thing, but we must not try to justify their actions, no one is that brainwashed! The families are no way to blame and have no reason to know their sons were unbalanced, real psychopaths can hide it very well!