Losing the physical self

Anita wanted me to provide everyone with an update on her situation and she says that she will reply to all the emails as soon as she can.
It is now November 2006 and it’s past the 3 year anniversary of Anita’s surgery. Progress is slow but she IS making progress. She has been discharded from the rehabilitation facility and has moved in with her mum and dad up in the Lake District (they only have dialup for internet access so you guys may have to wait a while for a response to an email!)
Although a myriad of things have happened over the last 12 months, Anita is being extremely positive. She now has phisio 3 times a week, plus speach therapy, and occupational therapy in the form of my mum who is keeping Anita busy in the kitchen!
On a side note: Anita wanted me to let everyone know that her and Howard are no longer together and they are getting divorced. Anita also wanted me to let everyone know that she really appreicates ALL the support that has flooded in over the last three years - it mean so much to all of us. Thank you!
I will try and keep everyone posted on what is happening with Anita and when she finally gets ‘highspeed’ she can update the sight herself.

There isn’t anything to write about anymore on this website, the time has come to voice my own thoughts elsewhere. Hopefully one day Anita will use it to express herself. People keep asking me for updates but they will have to ask her or the hospital. I can only end with one of my favourite poems and with love.

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)

I sit here on the canal bank. My toes skim the water. The sun is lowering more every minute directly into my face, infusing me with warmth, penetrating my soul. A canal boat passes and watching me busily texting the navigator makes a comment about technology and nature. I tell him I’m writing poetry which makes them all laugh. I have come here by cycling gently through my grief. Sometimes the impossible is just that and all you can do is be. As long as you can feel, you are still living. Its not hard to let go, you just have to take your hands from the bars. It worked and now I have found my place.

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.

Today Anita had some plastic surgery on her face. It has involved several incisions in places that will be hidden, by her ear, inside and outside her mouth. The operation has helped her have a more balanced face and her speech has improved markedly.

There was a meeting today with various professionals from Milton Keynes and the staff at the hospital. We joined the meeting after an initial discussion to consider the next steps for Anita were being considered. She expressed her desire, quite strongly in the meeting, that she thinks when she comes home the physio will be reduced to an unacceptable level. Because of what she has been through before, she feels she will be let down when she returns home. There are no available spaces in Oxford and the talk is of her returning home with support. The outcome was that a well considered plan needs to be drawn up for her return, one that will satisfy all involved. In the past I have been dissapointed with the full needs assessment Anita received. Particularly when you read what the governments has set out in the National service framework for people with long term conditions. You can read about that in a previous post. Quality requirement 1 states:-

A person-centred service. People with long-term neurological conditions are offered integrated assessment and planning of their health and social care needs. They are to have the information they need to make informed decisions about their care and treatment and, where appropriate, to support them to manage their condition themselves.

Anita has recently had another home visit and the natural process for her coming home is begining. This stage has had a huge impact on Anita’s mood, whenever she considers home she faces many uncomfortable issues. She doesn’t want to be baby sat, dressed, etc, she wants to feel that she can have a more independent future. The dificulties of coping with this life change can make her difficult to talk to and she is not able to move on. I have been trying to get her to accept certain things, I have always been honest but that can sometimes make me the enemy.

This week Anita refused an operation on her back. She was due to have a biopsy taken from her back to determine if she has an infection. She says she doesn’t want the operation because she is afraid of becoming paralysed. After what she has been through I can understand her refusal. Maybe the op hasn’t really been explained to her. She doesn’t think her back problems are down to infection, she says it’s a problem in the alignment with her disks. She reckons that she’s been tested for infection before and that her records haven’t been looked at.

Anita was under the anesthetic yet again as she added to her massive tally of operations. She had surgery to center her eye in its socket. Fortunately she was in better spirits than she had been recently. The old ups and downs are still happening. She always faces operations with bravery and it’s usually me who does the worrying. The operation seemed to go OK and we’ll wait and see how straight they have managed to get it. The surgeon said he would get it as straight as he could. There was more of a risk because she has had squint surgery in the past.

I have written a poem for my sister.

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.

After years of keeping sickness free I have been completly sidelined with my second cold virus in the space of a few weeks. I hesitate to mention the word flu because I believe that term should only be used when it can kill you. I try not to let the frustration get to me because in the great scheme of things it’s nothing and a positive outcome was that I had time in bed to read a book called A million little pieces. It is the story of a 23 year olds time in a treatment centre for drugs and alcohol rehabilitation, after destroying his body and his mind almost beyond repair. The fact that I am regularly visiting a treatment centre to see Anita made the book more interesting. It was pretty obvious the book had been embellished and although I can’t see the similarity of life in Anita’s hospital it did offer some an interesting insight into addiction and how your life can be affected at an early age. I think Anita would find it a decent read, mostly because the attitude of the individual involved has similarities to her own. He is told that he must follow a certain process otherwise his chances of survival are a million to one. He continues to ignore this and follows his own path; he is a very bloody minded individual. The same single-minded personality that could self destroy actually gave him an edge in recovery. It’s worth pointing out that this book has also generated a large amount of controversy and some people have pointed out the danger in an approach that may not be that successful. It should be treated as a work of fiction but is still a worthy read.

One thing referred to in the book is the Ta de ching, roughly translated as The Book of the Way and its Virtue. I keep a copy of it with me on my hanheld computer. The widom of the Ta (pronounced Dao) de ching is beyond belief, it was written around 600 BCE by a sage called Laozi and is one of the most important in Chinese philosophy. Below is one of the very first quotes from it which in hindsight reflects an earlier post I made.

Free from desire, you realize the mystery.
Caught in desire, you can only see the manifestations.

Yet mystery and manifestations
arise from the same source.
This source is called darkness.

Darkness within darkness.
The gateway to all understanding.

Why is it when I find myself looking at a digital clock I often see number ones (11:11). The date Anita sustained the brain injury and quite possibly the eleventh hour is when things went downhill. Such a striking thing to look at on a digital clock, straight parallel lines, heading to infinity.