Saturday, 1 October 2016

The NHS and my Granddaughter

My life continues to be blessed as the following two stories will show.

My Granddaughter

On Tuesday 28th September 2016, our three year old granddaughter, Mabel, came to visit us with her father, Alex. They and our daughter had recently moved away from Brighton so that they will be nearer the centre of London where our daughter will be working for the next twelve months. If Southern Rail had been a bit more reliable recently, they might never had thought to go. We were a little concerned how Mabel would deal with a trip back to Brighton having just got used to London. However, she seemed to take it all in her stride and there were no tears when she had to leave even though she had not had her usual nap after lunch. Now, there is a small recess in a wall inside our house in which we have kept for quite a few years a flat grey pebble, a keyring with keys attached and a little woollen donkey which was originally the fob to the keyring. As Mabel passed this recess as she had done so many times before, she paused and picked up each of these objects one by one, kissed them and then put them back and walked on.   

The NHS

The National Hospital of Neurology and Neurosurgery
On Wednesday 28th September 2016, I went up to London for a Re-Assessment of the Deep Brain Stimulation (DBS) surgery. I had been experiencing little problems over the last year or so since the surgery in May 2014 and, at my last regular meeting with the delightful Patricia Limousin, the Neurologist in overall charge of that section at the National Hospital of Neurology and Neurosurgery (NHNN) at Queen Square, she suggested that I return for this re-assessment. 

Well, as before, the treatment I received was exemplary. Joseph Candelario, one of the specialist Parkinson's Nurses at the hospital, oversaw my stay. I wasn't an In-Patient but they did arrange for me and Jane to stay at the Holiday Inn around the corner, the cost of which is apparently much, much less than the cost of putting me up in the hospital itself. I won't bore you with all the details of what happened but I must tell you that again I was overwhelmed by the dedication, kindness and professionalism shown by all the staff there including Joseph himself (who with patience, clarity and good humour explained carefully everything he was doing), Tim Grover (the speech therapist with a beautiful smile and kind eyes), Catherine Milabo (the specialist Parkinson's Nurse and only recently returned to work after maternity leave), Dr Limousin and all the other nurses, doctors and secretarial staff who work there and most of whom I saw at different times over the three days I was being 'fine-tuned' as Joseph put it.  And also the other patients with whom we chatted whilst we were there and whose names we never swapped with our own but who also were full of praise for the hospital and the people who work there.

This is the NHS at its best, staffed by wonderful caring and well-trained human beings from all parts of the globe - in fact, apart from the patients, we only met one person who was English in the NHNN and the Hotel combined. If, after Brexit, the non-English workers are repatriated (and I am not saying that will happen but there are apparently some weirdos out there hoping it will), the whole country, let alone the NHS, will grind to a halt. Taxes should be raised to ensure the future of the NHS but the politicians are scared to death that that they will lose votes if they do this and yet, everyone I speak to would gladly pay more to preserve it.

So, thank you all at NHNN for what you did in 2014 and for what you continue to do.

Numbers

He filmed her with a camcorder
As she walked daintily along the corridor
This was all the space they had in which to work,
She could not have been more than, 23 or 24?

He said that he had had DBS a fortnight ago
And, since, some sort of relapse but now felt fine,
He'd played with Greaves, came from Norfolk and smiled;
I guess he was about, what, 49?

They had both travelled up from Wales
Her head hung at an angle of 45 degrees
Yet, this was far better than before her operation;
Her age? I guess 53?

I found some loose change in my bag,
I gave it all to the guys sleeping by the road,
They were Julio and Simona from Bulgaria
Both in their thirties I suppose.

How lucky am I to live in England!
With an NHS - how lucky to be alive!
I have had one life and now I have another 
And I am only 65........

Thursday, 18 August 2016

SADNESS

I keep making the most crass mistakes. All I can think of is withdrawing from the world to avoid them and so I feel much closer to death and more ready for it. Jane asked me this morning what was  up with me and suggested getting therapy but I said that all I would do is cry. She said that would be a good thing and that I would stop eventually. Hmm.

I cancelled a meet with some friends just now and sort of wished I hadn't but I'm sort of glad I did.

I wrote this poem earlier

The Door

When the time comes,
I shall be alone.
Those who are tending me,
The man on the street,
A nurse or you,
Will be there 
But you will leave me at the door.
I have never been truly alone before;
What will it be like?
A simple question asked with innocence
The answer to which I do not know.
I shall not be the first to walk through the door,
I shall not be the last
But it will be the first and last time I do it

And I shall be alone.

Enough said?

Friday, 18 March 2016

PEACE

PEACE

Times when I have experienced Peace:-

Putting on a pair of sandals as a boy of Six and rushing out to play in the street

Catching a bus and arriving in good time for a film such as The Magnificent Seven and for it to satisfy me on every level

Going to Cornwall with Jane

Looking at Jane as “All you need is Love”’ starts being played on the organ at our wedding as we turn to walk out down the aisle

Floating on my back in the sea at Formentera

Listening to The Beatles

Reading “Tess of the D’Urbevilles” through the night in 1973

Going into hospital for my DBS and just handing myself over to them for their care

Stopping work in 2006 and walking away from the office for the last time on the following weekend.

Being so tired and going to sleep the moment my head hits the pillow

Dancing to Take on Me by A-ha at a party at my brother’s house

Coming back from the Hoffman Process in 2002

Swimming naked off Brighton Beach at 5 o’clock in the morning

Being photographed by Marta Kochanek

Leaving  school



I was tempted to just put the title “PEACE” at the top of the page and to leave the rest blank thereby representing no worries, no pain, no sadness, no nothing. I think that is what Peace is – an acceptance of whatever is happening to you. If I had died on the operating table during my DBS surgery, I would never have known. I would have just….gone. That is peace. Total peace and that is why we have to die. We yearn for happiness, relief from strife and pain and the only way in which we can achieve that is by experiencing total peace and peace can only be achieved by death. I guess that there are some people who are so switched on spiritually that they can achieve a state of mind which equates to peace in their lifetime and, if that is the case, they are indeed very fortunate.

I yearn for Peace.

Thursday, 25 February 2016

HOW I COPE



When something like Polio (which I had when I was seven) or Parkinson's Disease (which was diagnosed at the age 54 but which, looking back, I am sure I had when I was 48) comes along, how does one cope? Not only physically but most important, mentally?

In many ways, as a Parkinson's "sufferer" (and I use that word guardedly), I was fortunate to have had Polio because, to a certain extent, it prepared me for Parkinson's. When I was seven, my knowledge of life was very limited; it was based on my existence at home and at school. I had little or no concept of the world at large and so, when I lost the use of my right hand (temporarily as it turned out), I did not think to myself "Oh my God, I shall never be a great sportsman, I shall never be attractive to girls, I shall never be able to pick things up from the ground between my finger and thumb, I shall never be able to throw a cricket ball, wipe my bum, masturbate, play the piano or hold my pen like other people do". I was too young to make those comparisons. Of course, I may have been a very phlegmatic, accepting and calm person and so, if it had happened at say the age of 33 , I might have been more affected and depressed by these sudden limitations. But, overall, I think that having had Polio, I was given a taste of a life without which made it easier to adapt to PD later in life.

Nevertheless, I still had to cope with PD on top of the limitations already imposed by Polio. How did I cope? I was realistic. I knew that, in time, I would end up in a wheelchair and that I would be incontinent and possibly suffer from Dementia as a direct cause of the illness. I was reminded each day, each hour, each minute  and each second that I had a debilitating illness by my inability to do even the most seemingly simple tasks such as doing up the buttons of my shirt, cleaning my teeth, tying my shoelaces, speaking to people, eating food (especially spaghetti or meat that needed cutting). Potentially, this was a miserable state of affairs. However, I did not sit down and say to myself "Right, let's devise a plan of action to cope with all this - one, start photographic project, two, make Zorro films, three, wear incontinence pants". But I was lucky for the second time in my life. Having PD mean that I was able to retire and being able to retire meant that I could do all the things I wanted to do but never had the the time i.e. watch cricket, go to the cinema and go out and have a coffee and do the crossword. As it happened, these things were not enough as they were all solitary experiences and I missed the daily, hourly contact with other human beings. So, when my photographic project came along, off I went into to the stratosphere. In the middle of all this, I had a very significant meeting. I had been seeing a speech therapist for some weeks and one day, she asked me how I had been and I said "Ok but I have just joined a local cinema club and when I walked in and bought my plastic glass of wine, I felt very conscious as I walked to my seat, that I was shaking and I thought all my friends were looking at me thinking there's poor Tim with his Parkinson's" The speech therapist said immediately "Tim, you're not the Tim you were, you are Tim with Parkinson's and the sooner you accept that fact the better" It changed my life almost immediately.

Now, I know that everyone is different and has had different experiences in their life and may not have had the good fortune to have been born with a positive outlook on life or to have had Polio at the age of seven but I do feel that, if any ailment should befall you such as PD or any other permanent debilitating condition, if you can accept that fact and yet, at the same time, carry on creating things to do, it will keep any possible depression at bay. It is a vicious circle - if you are depressed about your condition, you will not be able to be creative. Equally, if you are aware of your condition but don't allow it to dominate your thoughts or your intercourse with friends and acquaintances, you will become more positive and open your mind to more creative thoughts and pursuits.

I was lucky. I fully accept that. But I do believe that others not so lucky can make a life for themselves if they manage not to allow negative thoughts about their condition to dominate but instead to run alongside positivity. Those negative thoughts will never disappear, I know that. Just don't let them win.

Wednesday, 13 January 2016

TAKE ME WITH YOU

Me and Clare

Clare Best is not only a superb poet and writer and now a great friend but she is also a very brave woman. I was approached by her in late 2012 following the presentation at Brighton and Sussex Medical School (BSMS) of a talk about my photographic project "Over the Hill". She wrote to me soon afterwards saying that she had attended the event but had not had the chance to talk to me afterwards .

Clare explained that she was a writer and poet with a family history of breast cancer and a few years previously had opted for preventive double Mastectomy. As part of her preparation and journey through surgery and recovery she had herself photographed before and after by Laura Stevens, a photographer who was at the time based in Brighton and who subsequently photographed me. Clare had written a sequence of poems Self-Portrait without Breasts which had been published in her collection of poetry Excisions. She said that she had enjoyed my talk and asked if I might be interested in meeting her. A fan! Of course, I wrote to her straightaway agreeing to meet and also suggesting that we might collaborate on something poetic or photographic. 

The rest is history. We did meet and we have collaborated but not quite poetically or photographically although there have been poetic pieces written and photographs taken and the upshot of all this is that we are now presenting our joint project "TAKE ME WITH YOU: the museum of friendship, remembrance and loss'' at the BSMS at 6pm on 18th February next. 

Entrance to the event is free but if you do wish to come please book through Eventbrite by following this link.

In the meantime, watch this and get a taste of things to come - https://vimeo.com/151631440.

Wednesday, 12 August 2015

MISTAKES

It could be a mistake to write about this subject so I won't.