Losing the physical self

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.

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

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.

Anita has been taken off the ventilator today. However her breathing is very difficult. It could be down to old scars in her throat providing an obstruction. They are not quite sure but they are considering putting the tube back in. It would mean a step backwards from their point of view but it may be necessary. They don’t want her airway compromised. As always she is causing problems for the doctors. They have taken a good look at all her blood tests. Her blood pressure was lowered so much that it lowered her body temperature and shut her system down. The liver was damaged as a result but not enough that it would kill her.

13.30 She is struggling with her breathing but I get the feeling she is trying to talk. The doctors are getting very concerned about the neurological side of things because of the full horror of what she has been through. The fact that full conciousness is difficult, they can’t rule out further brain injury. My tension levels at this point are the worst they have been. She seems as if she is trying to communicate, she cry’s, I guess it could be the realisation she hasn’t made it. She has now squeezed my hand in response to my request as she struggles for breath. My god, what could she have done to her brain, I want to cry out in anguish.

Late at night, Anita is trying to speak to me. I can’t make out what shes saying, her first words are possibly, brain injury. I hear her liver is over 7000 something when normal is 30. Later I get a call at the bungalow which gives me a jump start. They just wanted to tell me that they have reinserted the breathing tube, she’s still having difficulties breathing so this seems sensible. However they don’t need the ventilator on.

It’s taken a long time for me to see her this morning, there is someone who had a heart attack in the next bed. They hope to take the tube out that they re-inserted last night soon. Her liver function has improved by 3000, the last 2 days it had been over 7k

I am getting almost 6 hours sleep a night but I seem to be more and more exhausted as time goes on. The stronger you try to handle everything the harder it seems to get. I am worried the the last 2+ years are taking their toll, not just what is happening now. My cold feels like it’s getting worse.

She is awake enough to hear what is said and she can squeeze my hand once for yes. I can tell that she is hurting mentally, not physically, from the squeeze and the occasional tears. The delimma I have is what to say to her, apart from the obvious. Both parties can get very frustrated with communication so I know I shouldn’t try to much. We need to let nature take it’s course.

She keeps trying to talk, I can’t make out what it is, maybe she pleading. This is horrible.

Christmas morning, frost on the ground and I open the quote book.

Suffering only hurts because you fear it
Suffering only hurts because you complain about it
It persues you only because you flee from it
You must not flee
You must not complain
You must not fear
You must love

I am told the paracetamol she took was not enough but even so her liver is 4x worse than yesterday. Her liver is 100-200x worse than a normal one. Anita opens her eyes for a minute as I greet her, her GCS is around 7 the same as yesterday. Thats as much as I get, no squeezing of hands yet but now she has just moved her leg. That probably means her GCS is improving all the time. I can’t help feeling she’s slowing the waking up process. The staff keep telling me that she can’t control the bodys natural recovery. It’s only a matter of time when she wakes up. In some ways it’s nice to see her peaceful before the storm to come.

Christmas message

The staff are talking about people rushing around doing their shopping, being physically pushed around by others. One woman through a complete fit in Mark’s and Spencers when the Christmas turkey she had ordered was too small, and two women had been seen fighting over a lettuce. Absolute madness, but it can assault any of us. People talk to me all the time with the proviso ‘but how can I talk about my problems when your….’. That doesn’t really matter, the problem is equal to the space it takes up in our own minds. Therefore someone could almost be as distraught over a lettuce as they could losing everything in life.

Next time you want to fight over something let it go, let the other person have it and smile to yourself. In fact smiling to yourself helps alot. People will think you are mad but what the hell, if you don’t feel good about yourself no one els will. Do the same to the queue jumpers and pushers, let it all go.

One of the benefits of being in hospital as a visitor for a while is the calm it can bring. Obviously, to a certain extent you have got the anxiety, tradgedy, etc. to deal with but even this can drive you to an inner peace. The reason is a simple one, you are cutting all the noise out of your life. You are sat there with nothing to do but love. You don’t even have to think too much if you don’t want. We fill our lives with so much stuff, busy ourselves with all sorts of things and this stuff is addictive as heroin. It’s shocking that we force this way of life on others. Once most of it is forced out, a few things that matter are left.

I really wish this website could bring a dose of this calm to everyone out there. Far from doing that, most people are absolutely mortified on reading it. The sad thing is that wasn’t my intention at all, far from it. I would prefer a reaction that inspires a love of life. Merry Christmas.

Anita is becoming more awake. They would prefer she wakes slowly and when there are more Doctor’s around.

1.00pm The Doctor has just explained to me her current state. They are mainly keeping her settled in the expectation she will wake up at her own pace. Some of the drugs she has taken are longer acting. In terms of her organs, there is every reason to think they should all recover over time. My major concern is if she has suffered any further brain damage. I know to well what that can bring. The Doctor explained that this would only have occured had there been a period of oxygen loss or possible massive low blood pressure before coming into hospital. As far as I am aware that is not the case. To keep fits at bay they are giving her phenetoen. More drugs to the system but necessary one’s.

A vicar is on the ward and it makes me smile to myself. I thought if he comes over and tries to talk to Anita that would really send her into relapse. Probably not a good idea to get into a theological debate with him. Both me and Anita could never conform to the dictate of a religion. A set of facts and rules, a manual for the desperate when the truth is inside. A religion is what you find when you are taught or desperate, not seeing the truth for yourself from the inside. Faith however is a whole different story.

Anita is not reacting to much, her GCS is around 7, when I first arrived it was at 3.

22.00pm Not a lot happening so I nip out and sink a couple of red wines at the pub up the road. It’s a beautiful clear star spangled night and the yellow Christmas lights on the houses look lovely.