I have been here before
but when or how I cannot tell:
I know the grass beyond the door,
The sweet keen smell,
the sighing sound,
the lights around the shore.

You have been mine before
How long ago I may not know:
But just when at that swallow’s soar,
your neck turned so,
Some veil did fall,
I knew it all of yore.

Has it been thus before?
And shall not thus time’s eddying flight
Still with our lives our loves restore
In death’s despite,
And day and night yield one delight once more?

-Dante Gabriel Rossetti (sudden light)

The water is moving from right to left just enough to be noticed, carried on the gentlest of breezes. The more I settle, the more I hear, the fish and birds spring to life. I dip a toe in the water, it’s cool yet refreshing. I’m beggining to like it, there’s no shock as I would have expected, it just feels lovely. The dark water isn’t murky, just an impenetrable viridian. There’s no urge to swim right now, watching the ripples I create is plenty.

The sun goes down, my soul is enlightened but now can hide in the shadows for a while. The sweep of the canal round the bend beckons, it’s time for home.

Mum was sick yet again
But sis was always there,
She helped with my breakfast
And combed my knotted hair.

Not strong enough to open doors
Through the sitting-room window we climbed,
Being with sis was always exciting
Most definitely fun inclined.

My sister took great care of me
When I was young and small,
She taught me to be brave enough
To stand up big and tall.

But everything changed one night
Not so very long ago,
A frantic call from the hospital saying
It was time for sis to go.

But sis was a lot tougher
Than everybody thought,
And she spent some time in intensive care
With a ‘killer’ sheep we bought.

Though sis is very different now
I’m relieved she decided to stay,
She sits in a chair; we laugh and joke
About the games we used to play.

Being restricted in a wheelchair
And driving us all nuts,
With sis’s determination
There are no ifs ands or buts.

Not everyone is lucky enough
To have a sis like mine,
And although things are hard for her
She may adapt in time.

She’s a symbol of loveliness
Although she doesn’t see,
That it’s what’s inside the heart that counts
And not what people see.

Although this time is hard for her
I hope that she can see,
How much I look up to her
To be the best that I can be.

Grief can sharpen our today,
not blunt our tomorrows.
Help us recognise the greater force,
not lead a life full of sorrows.

There is a flow of energy all around, connecting and grounding us. We are so wrapped up in the noise of our manufactured lives that we need to be taken to extremes to be awakened to it. We should learn to let things happen in life, follow the ebb and flow, watch the cycles and feel the harmony, following nature’s examples. Life is the coexistence of opposites including joy and sorrow, these opposites are meant to flow together, one embracing the other.

I think of us always walking the shore
that tiny island that is no more
a private beach for us to moor

Ships pass through the linen veil
come and go they slowly sail
white sheets your skin still pale

The yellow costume your hair so fair
burnt skin glistens holding hands as a pair
a love so strong without a care

We’ll stay forever in our bed of dreams
A lifetime of make believe is what it seems
It is always and everything the only thing that means

Anita tells me

We are all in the gutter, but some of us are looking at the stars.

Oscar Wilde

Today I feel flat but there is usually a tomorrow.

I believe very much in fate, coincidence doesn’t even come close to explaining many things that happen in life. It’s all mapped out and you can’t avoid it. For example you see people or things when the odds are against it yet there are times when you expect to bump in to others and it never happens. If only you could just let go and have faith it will all unfold as it should.

The Way has no true shape,
And therefore none can control it.
If a ruler could control the Way
All things would follow
In harmony with his desire,
And sweet rain would fall,
Effortlessly slaking every thirst.

The Way is shaped by use,
But then the shape is lost.
Do not hold fast to shapes
But let sensation flow into the world
As a river courses down to the sea.

Tao De Jing

So much has happened over the last 2 years; even with Anita back the way she was, I would be very different person. While she has been in hospital I have had time to explore my love of life through various activities. It’s so unfair that if I talk to Anita of my joy from walking in the hills then it’s a reminder of what she has lost. To be true to myself appears to come at a cost to her.

In many different ways Anita pushes me away because she wants what she thinks is best for me. Surely it can’t be that bad when it’s inspired a deeper love of life. It can be awful when she picks on any scab in our relationship, there is too much for her to come to terms with. A few people have told me to be less honest but it’s something I have great difficulty with.

I have been busy exploring my love of art, although I am only really good enough to enjoy it for myself. One way to expunge the grief is to write; sometimes it comes out like the following example, written in a pub, drunk on huge quantities of the red juice.

Why do they all fall away
From thy noblest they can stray
That part of them that can’t accept
That life has meaning and regrets

The deeper force that lies within
Can self sustain when life is grim
But beauty lies at every cost
It hurts so much when all is lost

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 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

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?

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 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.

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.

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.

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!