Losing the physical self

Update

Nicola — Thu, 09 Nov 2006 21:59:53 +0000

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.

The last post (maybe)

Howard — Tue, 25 Jul 2006 19:32:21 +0000

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)

Toe in the water

Howard — Fri, 14 Jul 2006 21:03:04 +0000

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.

Plastic surgery

Howard — Wed, 28 Jun 2006 17:00:59 +0000

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.

What happens next

Howard — Wed, 14 Jun 2006 21:00:11 +0000

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.

Back surgery

Howard — Sat, 10 Jun 2006 17:58:39 +0000

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.

Squint surgery

Howard — Tue, 02 May 2006 19:08:54 +0000

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.

A sisters poem

Nicola — Sat, 15 Apr 2006 20:15:04 +0000

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.

Reading: A million little pieces

Howard — Sat, 08 Apr 2006 14:31:56 +0000

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.

Eleven Eleven

Howard — Sat, 08 Apr 2006 10:05:23 +0000

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.

Disability Living Allowance Form

Howard — Mon, 03 Apr 2006 21:22:45 +0000

39 pages, box after box, reiterating your disablement over and over again. What a pleasure it must be for disabled people to fill in a claim for Disability Living Allowance. It also something you have to do every year, like filling in a tax return! Yes I know you can use help lines and get support from social services, but how many hours are spent going through these forms. Surely it can be simpler than this, particularly if you have a major disability and it’s not as if there are more important things to do, is it?

How grief affects the living

Howard — Mon, 03 Apr 2006 21:22:16 +0000

Grief digs a hole in us, it creates a well that’s as deep as the ocean but usually has a bottom. It can be filled with an ocean of tears or a swirling vortex. For me it’s a dark calm pool that enhances life, and to feel things deeply is a beautiful gift. It allows us to connect with something bigger that is beyond our comprehension but none the less is shown to be real.

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.

Better transfers

Howard — Mon, 03 Apr 2006 20:28:00 +0000

Physically Anita is making very good progress from her poor state post Christmas. It’s probably the most rapid improvements that I have seen her make in rehab and is testament to the good help she is getting. She now only requires one carer and is able to assist more and more in her transfers. Her back pain has also diminished greatly. Her mental attitude though at times is just like before Christmas, and not being used to it, I still find it difficult. I have not got to let myself be drawn into her down days, I can’t be responsible for making her happy or her life. To be honest I have some selfishness towards my own life and can only be there offering support and balance. At times there is just a small chink of light that she could see things differently. If I sound negative it is a reflection of how best I handle the situation, not to be emotionally swung too much about her overall state.

Insomnia

Howard — Fri, 31 Mar 2006 21:59:42 +0000

A couple of weeks ago I couldn’t sleep, so rather than look at the ceiling I listen to music and write, I do that alot. I write many things that only exist as expression. I wrote something about our time together on holiday in Greece.

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 hospital meeting

Howard — Fri, 10 Mar 2006 20:42:39 +0000

There was a meeting today to discuss Anita’s progress and treatment. The back pain is still a problem; it’s hard to tell for certain what it is and it can hinder what she can do in physio. I attended a physio session, she did very well but the twisting required for her to rise to sitting caused a period of agony afterwards. She may have an X-ray on her spine to see if there is something wrong. It is getting better but it is still very slow progress. The heat pad often helps although it causes her skin to flush red.

Her sleep is more settled and consistent care is helping develop more trust with her carers. Her lack of trust has caused her to be much less positive in her movements. She is probably past the emergency immediate psychological requirements and has become more settled. Anita was asked what treatment options help and she agreed that the weighting on psychological help, backed by the physio was the correct balance. Ultimately she needs to find more meaning to her life but she is getting more to the point of making decisions. The hospital she is in can offer the best treatment possible on this basis. Our local council will ultimately decide the financial side of things, they may prefer to move her to Oxford.

She has become more motivated for activities and particularly enjoys swimming every week. Getting up in the morning is becoming easier. While she is in an open environment they would like to try her in an electric wheelchair.

Contact form email problems

Administrator — Fri, 10 Mar 2006 08:59:35 +0000

We have had a problem with the contact form on this website. We are sorry to anyone who may have sent an email message recently, for some reason the form stopped working. It’s likely your message will not have been received. We are still testing to see if the form is working again.

Gothic Nightmares

Howard — Mon, 06 Mar 2006 21:56:41 +0000

At the weekend I visited the exhibition Gothic Nightmares at the Tate. A suberb collection of fantastic and supernatural themes which dominated British culture from around 1770 to 1830. It is the whole genre that impresses, more so than the individual works, although I loved William Blakes etching (Plate 33 from Jerusalem) most. It’s hard to think of a time before the Gothic shaped our culture. The riots in London in 1780 helped shaped the work. Some of the artists have been proclaimed as mad but after visiting Anita on Sunday and seeing her face contorted with palsy and pain I can probably relate to them more than ever. I love the idea that by voicing our nightmares in writing or painting they hold less control over us.

Happy Birthday

Howard — Mon, 27 Feb 2006 08:03:58 +0000

Yesterday was Anita’s Birthday, when I arrived they were still getting her ready and for the first hour she was contorted in pain. She needs to get up and into the armchair because that seems to settle the pain in her leg. She has a plastic ball with spikes on that the physio has given her, she rolls it under her foot to keep the leg moving. She was still in good spirits and enjoyed her presents and a stack of cards. Thanks to everyone for these, I appreciate that Anita is always in peoples minds. The staff at the hospital not only had a present for her but brought out a wonderful chocolate birthday cake. I had my doubts at first but the pain eased and we went out shopping and managed to watch a film we had wanted to watch for ages ‘Walk the line’. She didn’t end up screaming in the cinema and a good time was had by all.

Psychiatric unit (day 21)

Howard — Tue, 14 Feb 2006 21:58:33 +0000

For some reason I have found it more upsetting seeing her recently. Maybe because it’s Valentine day and it brings back all the memories. She is drugged to drowsy, sweating profusely from her kidney infection, drooling and still has pain. I am very impressed and emotional that she has made me two valentine’s cards, one of them is from the cat. Neither of us can cry anymore so we don’t embarrass ourselves. The other day she made some scones and she was swimming yesterday. When slightly down I dread getting depressed, because I feel it could all fall apart so easily. The mystery of life so far has told me that we are all sailing more closely to the wind, mentally, than we think we are. It’s a good job I am an eternal optimist!

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.

Psychiatric unit (day 20)

Howard — Mon, 13 Feb 2006 08:42:07 +0000

Friday night and Sunday, Anita was in the best mood I have seen her for months. She still has alot of back pain but at least the situation is improving. She also has to get over a kidney infection that isn’t helping the situation. They have increased her anti-depressant medication, maybe it’s helped.

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