Losing the physical self

As I arrive tonight she is being spoon fed, she doesn’t want to move even her arms. Her head is rocking from side to side as she produces silent screams of agony. She has incredible pain in her back and legs and I am starting to wonder what is causing it. She asks me to help her die constantly and talks of how little she has to live for. She says I shouldn’t visit her and that one way or another she will die before too long. I say that I can’t help but at least I can be around and share a tiny part of her suffering. It concerns me that I have the necessary detachment to handle all of this, how far has it all pushed me. How can I remain so calm in the face of seeing someone I love in contorted in agony?

I think that in the space of a short time, the psychiatric staff here has got a really good grasp of what Anita is about. Although listening to her one could be forgiven for giving up completely, I try not to let any emotional ups and downs come into it. I am taking a step back and adopting a wait and see philosophy. It’s not possible to judge what she really wants until some things improve for her and I think there are avenues that can still be pursued. It would be easy for me to think right now, seeing her in so much pain only of the hell she is in.

She is an incredibly difficult case but nobody wants to give up yet. The staff here has gained my confidence by what has been said. The difficulty is that there are so many factors to balance plus even after all options are explored she may still wish to die. The terrible back pain she has right now, must be eased, but yet balanced with the urgent need to get her mobile. Her mobility and mood are interconnected and there is probably no one place that can deal with all the issues expertly all of the time. She is on various drugs and has been started on an antidepressant called Anatriptoline (25mg) which can have side effects. Whatever the case the only way forward is the same as rehab but this time all psychological avenues need to be pursued as well. She needs to be improved to the point that she can at least see the options clearly. For me I can’t afford to have any hopes or fears for the future, what will happen will happen. I just wish she could feel the joy for life that I do!

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.