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.

Anita is still on the ward because after scheduling many transfers down here they are still not able to stabilise her temperature. She needs to be medically fit to transfer. They were thinking of doing a blood transfusion in an attempt to sort out this problem but decided against it. The good news is that she agreed to this treatment and it sounds like she is at least a little more positive in her wish to get better. It’s also good news that they are trying to find the right kind of place for Anita to go next. Everyone recognises that she does need to keep some kind of physical progress going because it will help her mood. Whilst relatives have been visiting her I have been taking advantage of a break to enjoy some of the things I like doing.

Anita is still in hospital in the north she has been there for 26 days now. For the last two weeks I expected her to be transferred but medical complications mean thats not happened. The infection she had on her chest spread to her blood and she has had some strange reactions to the antibiotics. She has also had an abnormal heart rate which left her quite poorly on Saturday. Hopefully that is all now under control and it’s possible this week that she will be transferred and assessed in a psychiatric ward close to home. That should determine at what point she will come home, it could be fairly soon. I hope it is, for her sake but it also makes me queesy to the pit of my stomach. There is no one on this god forsaken planet, who I can love like I love her but I am having to try extremely hard to be positive. The memory of leaving her on that ward full of very old people lies like a dead weight in my heart.

A few months back I received an official letter warning me to make sure any pills or knives where out of her reach. I didn’t like treating someone as intelligent as Anita like that and I had never told her to do anything in the past. From a purely selfish point of view this put me under incredible pressure, something that is not going to let up anytime soon. My spritual beliefs, that we are all set challenges in life that are our destiny, make things clear in my mind. I don’t know how society judges her but the thought of her being mad is total rubbish. She has to get psychiatric help because she’s sane but outside of any other help she can get. She really needs to be getting the sort of theraphy she got after the brain injury. No one will be massaging her left arm now, stuck on that ward. No one will give her lots of physiotheraphy in the psychiatric ward. I know she will blame herself for this set back and the lack of mobility she will have as a result. It’s all down to that shocking brain injury, nothing she does can be wrong having so many important things taken away. She has been to hell and not come back yet and is entitled to be unhappy with her lack of freedom. In the year ahead I will have to try and convince her to live, but like a caged butterfly.

Anita is now well enough to be out of intensive care, but beds on wards are in short supply. I need to get back to work so that I can escape this madness for a while. Hopefully they will be able to transfer her soon but it’s likely there will be a period when she won’t have me sitting by the bedside.

She is up in the chair, shivering like mad from her infections. I help feed her; she is eating with no problems whatsoever. Her temperature is coming down and like before they are having a problem getting lines into her veins. They give oral medicine instead. People are always able to see the warmth in Anita wherever she goes and she can still be very funny. She says she is feeling pain in her face, how ironic would it be if the trigeminal neuralgia returned.

Suddenly the transfer to a ward occurs and I remember the window view from when I was a patient many years back. When she talks it’s loud, shouting out ‘I am immortal and nothing can kill me’ not good for the old dears in the next bed. She may well get her own room soon. I would like to thank the staff in Intensive Care for their wonderful work with her and most of all their understanding.

The drama that happens with her always seems to fit into a pattern. It’s amazing how she has moved to a ward just as I am due back to work. Like life is saying, OK, you can go back now, drama over.

Anita this morning has a spiked temperature, which indicates some kind of infection. She looks to have a very red face and is laid up in bed. They are conducting lots of blood tests, x-rays and giving her antibiotics and paracetamol. She says she has meningitis but I tell her that she will have picked up one of the many airborne bugs that are in hospitals, to go with the MRSA. The nurse tells us it comes through the lines into the body. This time at least none of the lines go into her brain.

Even though she is poorly this morning she is still talking non-stop. She is always very interesting but like before when she becomes very negative it’s hard work. She tells me that the nurses said ‘If you pick at a scab it will never heal’. I guess she is good at picking at scabs and her brain injury is an enormous one. Listening to her is a difficult reminder of what she was like last year and how hard it was to not get annoyed. In some ways it was easier when she was peaceful on a life support machine. Still at the moment she has a lot more possitivity. She doesn’t remember trying to commit suicide and says it was an impulse thing.

I had planned a break over Christmas but instead I got more drama. If I was in a boxing match I would have nothing left, awaiting the knockout punch. I have to steel myself for the coming year but maybe I now need the drama in my life, otherwise I become bored. The last thing I want in life is mediocrity. Anyway, the New Year is only significant from a number point of view.

Sometimes I feel like the angel in the film ‘Wings of Desire’, observing but not partaking in the life around me. I feel there is a distance between me, and the rest of society and I don’t know if I can close the gap. The Angel becomes mortal and the film conveys deep love of life. These are the things I feel and none of them are bad. There are times when you get a sense of the unfathomable number of individuals on this planet, each one in their own world. It’s too overwhelming to consider all these worlds. These days I take more interest in them than I have ever done before.

I steal myself away to the beach while Anita sleeps. It’s a beautiful cold clear and sunny day. After a long walk along the shore and dunes I stand in front of the sea. I would give anything for Anita to appreciate this beautiful place. In this very open but private space I suddenly feel the tears rolling down my cheeks. I watch two seagulls flying together for a while then separate, one of them flies into the low bright winter sun and disappears. I wouldn’t be what I am with out my time with Anita and I like what I am, and what I have learned. She has made me a better person. However I hate feeling as vulnerable as I do and there are so many risks writing like I do but I can’t help myself. I originally started this website to help Anita and others with brain injury. I really don’t think it has helped enough. Nothing I do seems to help Anita. It came a hairs breath to ending this Christmas but it is destined to carry on into this New Year.

I take the opportunity to get down to the beach on Walney Island. There is a long exposed west facing beach that is a good place to refresh. The sea always feels like an old friend, it’s the same wherever you are. It isn’t peaceful today it’s roaring. Why is it that it is so hard to walk away from the sea, it always feels difficult to leave it. So much so that sometimes I walk backwards to look at it. It’s grey and overcast, I can just make out black coombe over the estuary, the mountain close to where Anita spent most of her early life. The sky darkens and when the rain comes it seems to quieten the sea. The quiet makes me reflect that I am definately not an island.

As I walk back along the path a kestrel hovers for it’s tea. It looks so graceful when it flies but hovering in the increasing gloom it looks like a scrap of black bin bag. I stop and admire this incredible patience and determination, struggling with all it’s might. In an instant switching to the grace of flight.

Now Anita has her own room she sleeps in so I get to see Barrow in the light, unfortunately it is a grey wet morning, the sea and industry reflect the weather. I still find it more suitable than Cambridge. I suddenly realise how much I have missed the sea and I need to get down there at some point.

I didn’t sleep well, a swig from a christmas present didn’t help. Last night was hard, Anita still appears very droswy and she has started talking alot although it is slow. Of course she is very emotional but it hurts to see her in a confused state, like an old woman, drooling heavily. Harsh words I know but there are things that hurt even more. Some I prefer not to write about but even that I know she is bound to be confused, given what has happened, it still raises the spectere of the damage done. What we are going through feels like before but with someone pressing the fast falward button.

Last night I felt that we both feel so utterly alone but the position Anita is in goes alot further than being alienated. She must be at the back end of beyond. She was always such a wonderful person who gave to charity but more important, herself to others. She was exceptionally tough and intelligent but sensitive. I cannot help believing if the roles where reversed she would do anything to help me. She has told me many times that Anita is dead. She is watching the hitchcock film Rebecca, not the most suitable choice.

They have taken many lines from her and will take out her central line today. There is no monitoring needed and the more lines you have the more risk of infection. She would love a cup of tea but it’s going to be a frustratingly long wait before her swollow gets tested again. All the blood tests are showing improvement. If they can find her a bed she is ready to be moved to a ward but it may take time now she has MRSA.

It’s a bitter cold morning, dark with driving rain to match my mood. I am starting to think ahead, I will have to go back to work soon and thats going to make visiting difficult. There are loads of appointments that I had organised for her that need cancelling. From talking to Doctors she could be in the hospital weeks rather than days.

She is sat up in her chair, head falling to her right. She is much improved and is talking all the time. Not that I can hear her, her lips move but no sound comes out. I get her to write. The first thing she writes is ‘Why are we in Australia’. OK, that has really not helped ease my fears. She follows this with ‘I asked for ice cream’ and ‘I had no plans to do it just had a dreadful time and could not escape’. She then starts to go on about Paula Yates so I figure it’s something to do with suicide. She is very very upset but shows good clarity and is still able to laugh. I think she realises the risk of more brain injury and is concerned she can’t talk so I reassure her.

She is progressing well, even though she is now moved to a room on her own because she has got MRSA. It’s not always the big problem those words conjure up in peoples minds. It’s a chest infection. She has now been talking all day and is becoming easier to understand. She is mostly OK but I think she has become a little confused by her recent time on a ventilator. She has imagined all sorts of strange things.

The mental health people from our local area are keeping an eye open for her return. She tells me she is not mad or hearing voices or anything. As far as I am concerned I think it’s simple, when someone wishes to die because they are not happy with the quality of their life it doesn’t neccesarily mean it’s somthing that can be fixed by addressing their mental health. Thats the difficulty that lies ahead. It’s a horrific proposition that society can’t help you with. I always told Anita that she didn’t have any choice about life but she obviously still wanted to exert some control.

I spent last night having a lovely evening with some friends. Gone are the days when I am prepared for all day and night sits. For a while now there has been a seperate part of me that has been able to exist outside of Anita, it’s something I treasure, although it’s enourmously sad. I also feel I have soaked up the life that has spilled from her, at times I have a deep love of life. God how good it is to talk to someone who knows nothing about me. How sweet it is to draw down that -5 cold air in the early hours, refreshing me inside. I tend to think that I react to these situations with calm but put me in a normal situation with friends and I can get a better assessement. I know there is some degree of calm but I am too close to know what else is going on, anyway it was an opportunity to spill my guts.

This morning the tube has been removed from her throat. Her breathing isn’t ideal but she is now OK with just an oxygen mask. She still gets upset most of the time, as I sit there with her sister her whole body starts to shake uncontrollably. Her blood pressure heads over 200 for a while, she is cold yet perspiring and looks very pale. She has seen better days.

The speech & language therapist came to assess her swallowing abilities. It’s not strong enough to allow her a drink or yogurt yet. Because of the bank holiday and shortage of staff she is unlikely to get assessed, and therefore any food, at least until next tuesday or wednesday. They will have to put the feeding tube through her nose and into her stomach, an experience that will leave her gagging. Last time around she didn’t get any water for months.

Other people die in these places, yet she lives on. Many people would struggle to get their head around all this. I know it must affect the wonderful staff here, I can see it in their eyes.

Anita is becoing more awake each day. She is absolutely devestated that she hasn’t got her wish. She is crying all the time and I know she feels sorry for me. She has always said sorry and I always tell her its a wasted word. It’s never been her fault and she will blame herself more than ever after this. I smile at her, she smiles back but it turns to tears in an instant.

She keeps trying to pull the tube out of her throat as she gains more strength. Hopefully the doctors will review her and decide to pull it soon.

Her liver function has improved again slightly overnight. With all the blood tests showing improvements it’s really all now about how much more damage has been done to her neurological function. Lets be honest, even just lying in bed for a long time is going to cause problems. There is a great risk now to the mobility she had because her brain may have swelled. Also because she is never a simple case in hospital you never know what lies ahead.