Happy Birthday to Me. Today I am thirty nine years old and feel simultaneously ancient and newborn, wise and stupid. I have realised that something in western medicine precludes it from recognising and dealing with my physical problems. The same though is true of me. I have had such a long slow and troubled journey in finding the hurts of my body that they have accumulated and somewhat overtaken me. I am afraid of what my body does and does not do. I am afraid I may soon not be able to walk and may never have the chance to snowboard again.

Today I am spending in the Royal London Hospital Whitechapel. This is not courtesy of the doctors who wished yesterday to discharge me but thge social workers who said yesterday the doctors could not have their way. The doctor who wished to discharge me is Dr Richard Marley, Consultant Hepatologist. Considering I am here for Neuromuscular problems that strikes me as strange. But then I am being discharged because I had the cheek to look at my medical records and complain about the nurse who assaulted me in taking them physically from my possession. Hepatology, being a specialty of blood as I understand it, would account for the vampirish nature of the Hospitals approach perhaps.

Being a patient here has been an awful experience. There has been a refusal to undertake the tests needed to establish what is wrong with me. In the two weeks I have been here my condition has worsened. On Wednesday in total frustration I tried to read My notes. Two nurses came at me, one from each side, to retrieve them. One of them held my arm, inflicting a minor bruise. When I read my notes I was acting contrary to the hospitals policy. In retrieving them the nurse committed the criminal offence of common assault.

In an attempt to calm the unpleasant atmosphere that followed I asked the nurse concerned if we could have a chat to clear the air. This never happened and I went to see the PALS office to chat to someone independent and be sure a record of the incident from my side existed somewhere in the system. The PALS office organised that I should see my records daily.

Yesterday at around 2pm one of the doctors on my team left the ward with my notes. Half an hour later I met for the first time the consultant I had been under for a week. The first thing he told me was that I was being discharged. There was nothiing the hospital could do for me. My notes had been lost.

The Hospital has failed to investigate the things its own doctors have said it needed to investigate. The social work team refused a discharge because of my ability to cope. I must get a social needs assessment. It may take a few days to put in place an alarm and care package.

“Don’t try to be right - be simple”

A piece of advice I was given by two people in two days. I find simplicity tough. I spent my life running and being right, desperately right. I think this advice may be the key to something fundamental in my journey at this point. whether it can help with my physical healing I do not know. It can certainly help my mental/psychic healing. It also helps very much with helping others and with not adding to the confusion in the world.

Conversation Number One - The Day after Admission

Dr Glynn “Should you really be in hospital”

Me “Let me put it this way. A year ago I was as tall as you, broadshouldered and weighed nearly twelve stone. Today I have the back of an eighty year old man, weigh eight and a half Stone and have shoulders narrower than any of your nurses. What do you think?”

Dr Glynn “Well, we won’t discharge you then”.

Conversation Number Two - Monday Morning

Dr Glynn “Tell me again what’s wrong with you”.

Me “I have a pattern of Muscular dysfunction which is maintained by and maintains a neurological deficit. It is the physiological result of being orally and anally raped as an infant”

Dr Glynn “I have no idea what we can do to test for that”.

Me “MRI scan my pelvis, hips, rectum and abdomenal musculature, my lumbar spine and right shoulder and undertake a functional test of the diaphragm”.

Dr Glynn “Even if we find what you say is wrong with you I have no idea if we have the skills to put you back together again”.

Me “No you haven’t, but I think Angela Gall at the Royal National Orthopaedic Hospital has. I wrote My GP this morning telling her you would say that”.

Dr Glynn “Fair comment”.

Conversation Number Three - Tuesday Afternoon

Simon (Senior House Officer on Dr Glynns Team?) “What did you need to see me for today?”

Me “How much do you know about the spine?”

Simon “Not as much as you.”

Conversation Number Four - Wednesday Morning

Paul (Another member of Dr Glynns Team) “The Neurologist you saw on Sunday morning has ruled out a neurological problem”

Me “I know the standard tests the Neurological Registrar performed looking for a neurological injury sustained yesterday don’t show anything but I’ve been compensating for these injuries for thirty seven years. Simply put, Paul, I have a return of skin sensation progressively from the neck down which is sporadic, depending on the condition of my neck. What does that sound like to you?”

Paul “A central nervous system issue”.

Me “yes. Your neurological registrar got it wrong”.

Within an hour a Neurosurgeon appeared.

However I have now been at the Royal Hotel Whitechapel for five days and they still have not MRI scanned my hips and pelvis. My right hip is swinging further and further out of joint. The degredation of muscles continues apace. The on call Orthopaedic has been on call to see me for the past three days and has not shown his ugly head. Today the Neuro-Med Physiotherapist came to see me. She could not find my notes so I gave her some history but after ten minutes she was looking at me like a madman and fucked off so quick it was frankly embarrassing saying she might be back next week. I need a back brace that takes the weight of my body and stops the progressive collapse of my lumbar and thoracic spine and hips. I need it now because the doctors have been fucking me up for the past two years. they maintain I have mental health problems. I suspect they have grandiosity problems. Most have forgotten they are just human beings like you and I. Dr Glynn is an exception. He is human, capable of humility and honesty and a genuinely nice guy from what I can see. Unfortunately he leaves most of it to his house officers who do not pull the weight he has. So i am left hanging in a bed falling apart, watching the hospital ceiling. At least if I break my back or die I won’t be discovered three years later as a skeleton and the medical negligence will be fucking unavoidable because I am “in their care”.

I really thought being in hospital would help but the speed at which some things move is frankly an embarassment. Meanwhile the nurse come round to do blodd pressure readings, washing their hands between patients and using the same blood pressure cuff for the entire ward. How completely fucking stupid is that?

It’s a strange thing when everyone you call to say you are in hospital says “at last - thank the lord” or something similar. But when the doctors have been as incompetent, narrow minded, arrogant and ignorant as they have in my case it can be a relief. The issue now is to make sure I am treated by open minded and open eyed doctors who can see the future can be good.

Having fought to get here for a year, the fact that I could hardly walk on Saturday and had to call an ambulance did the trick. Now if only they had listened they would have saved the many thousands of pounds it will take to reconstruct my right hip and shoulder, pelvic floor and put steel in my back. I can’t wait to get out but suspect I will be here for two or three months.

If you have a very twisted neck, compacted on one side because only that side do the muscles work, and when you untwist it partially you get a marked change in skin sensitivity and an explosion of taste in your mouth, would that imply that you are neurologically compromised by the compression of the spine at the neck? Are there other possibilities?

I have decided not to be so self destructive as to starve my already wasted body. I don’t think I would last long and I do not want to freak out my friends and family more than I already seem to.

If anyone out there is a british based Orthopaedic Surgeon or Neurologist or knows of one who will not be freaked out by meeting a Survivor drop me a line please.

Tony Blair says the london bombings this week were not related to our participation in America’s colonial war on Iraq. Mr Blair clearly has a very limited understanding of either the world he lives in or the public to whom he sells his vision.

Britain was widely respected before we took part in that unjust war as a fundamentally decent and open and outward looking place. This contrasts starkly with the views of America that were and are prevelant. Had we not taken part in that oil-seeking war we would not have been bombed.

As we already know that Mr Blair and his colleagues deliberately constructed a tissue of lies about the war before it happened, the best assumption is that he is also now promoting fundamental mistruth as reality. In short we know you are not an idiot Mr Blair but we also know you are lying, however cleverly you wish to do so.

The Net Effect

I can’t be angry or even cry
Though time is passing quickly by.
Each day I wonder how to try
And try to wonder where am I?
Who am I and what am I?
A person passing quickly by?
Seeing nothing quite so strange,
Each and every waking day.
As weapons burn and break the babes,
And children, children waste away.
And anger, still she stays at bay,
Not letting me feel that this day.

Walking back from the local cafe this morning I saw an acquaintance. I used to think we were friends but came to realise this person does not have friends, only acquaintances. He was raised by an inneffective mother who smothered his younger brother and ignored him and a father who was an abusive alcoholic. At quite a young age he took himself off to social services and had himself put in a childrens home.

In the home he had no privacy, no possesions that did not get stolen and nobody who cared for him as much as his parents. This person grew up to be afraid of anything resembling commitment or dependancy. Friendship feels too close to both for this person to be capable of it. A couple of times he has invented spurious reasons to stop visiting and drinking tea with me which for almost a year he did daily. The last time our friendship cooled it was because I had become rather fed up with his attitude and stiring trouble between people.

When I saw him walking towards me this morning with his MP3 player plugged into his ears I noted a look of confusion cross his face. He clearly was uncertain whether to acknowledge me or not. “Morning”, I said in a loud voice to save his confusion. He unplugged his ears and looked at me. “How are you?”, I asked. “I am not rude”, he said. “I am not sure what you mean”, said I. “Well, unlike you and XXX, I am not rude - I didn’t say ‘fuck off’ when I saw you”. “Oh right”, said I and continued after a brief pause, “well next time I should just say ‘fuck off’ and be done with it if I were you mate”. I went on my way.

I can’t be bothered with this person anymore. His ability to be confused whilst calmly assuring himself he is not is more work than I have the energy for right now. So now it is really simple: he can hate me with gay abandon as a ‘rude person’ and I can wish him more skills in human interaction and self-awareness. And we won’t feel a need to talk about it.