Unrelated Thoughts on My (Lack of) God and My Autism

I've just written a couple of comments on facebook and find I don't want to lose them.  One was about God and faith.  The other about autism, particularly my recent discovery that it's OK to stim, even that it's a very good thing.  They are personal.  They're just about my life - and really that's not wildly interesting so feel very free to stop reading now.  And they're just ephemeral facebook comments, not classic literature to inspire the centuries!  But I want to save them.  Because one revealed something to me.  And the other can stand if ever needed as a reminder of joy, a reminder of why the path I'm on is a valuable one.

Firstly, God.  How very orthodox, to place God first.

Following on from the gorgeous song from the last blog post an old friend commented, through his experience and love.  When I lived closer to him years ago he would have been the only person anywhere who could possibly have convinced me to rejoin the Jesus Army and give myself to those people and that vision.  Finally cutting links with that church meant I lost contact with him and that saddened me.  But by the wonders of social media - and in this case through a wild coincidence - he's back in my life in some way.

As part of the discussion he quoted the Bible:

"For I know in whom I have believed,

and am persuaded that

 He is able to keep that which 

I have committed unto him

against that day"

A perfectly good verse to quote.  I can understand it and understand having a lived truth in which that verse can be grasped, believed, experienced.  I can understand it because I applied those words to myself for many years - before my faith fell to pieces.  I had a response to this from my life - although admittedly it may mean more in the context of the conversation.  A response of honesty, but certainly not a response to argue against my friend's experiences of the Divine.  A response that reveals to me some of the faith in my faithlessness.

I am unpersuaded. There are many times I want to walk away totally, to not believe in anything 'beyond'. Part of that is my pure but possibly imperfect logic. I have argued out the dogma too many times. And much is a result of all the unhealthiness of my faith for too many years, why I embraced it, and how I allowed it to curse me even while grasping onto it so much as my hope and meaning.

But yes, I don't know how to not believe. I may not exactly be orthodox in faith. Much of the time I can't conceive of the reality of a being who is god. But I cannot believe that there is no other, cannot believe that all there is is the universe and gravity pulling us forever into earth. Whatever happens, I fail to stop looking beyond - both to the beyond without and the beyond within. I can't let go. No matter how much I've tried, and no matter how much holding on has deeply hurt. And Spirit can't let go of me.

So here I am, joined the church that should have been my last and which I was meant to have left behind. Getting lost in worship when I can't hold onto that belief. I cannot walk away. It's impossible. Much of the time I am faithless or have a faith that most Christians wouldn't recognise as Christian. But I remain. Because, through everything, I am held by that which is infinite, that which is fully life, that which is the Real, is Being, is Truth, is Eternal. That which is the ground of love and the ground of fire.

Hmm. That last bit might sound suspiciously like faith to some people. You might even apply a label to those words, and say that they are God.

Secondly, autism.  Thoughts unrelated to the above.

Just saying.  Rocking, pacing, moving, stimming feel so damn wonderful.  So much better than forever forcing myself to be outwardly still, to sit without moving.  Some of it is restful.  Some of it releases.  Some of it is grounding.  And some of it feels like joyed strength flowing into me.  All of which comes as something of a surprise.

I have always rocked but almost never let it happen because I felt too guilty and shamed by it.  "It's wrong.  It's bad.  Sit still.  Be quiet.  Be respectable." Thank God these things can change.  Learning to lose that guilt, and guilt over some of the ways my brain is wired, is starting to bear fruit.  At last.

I know there's still quite a way to go in learning to be able to allow my body to move as it wants to.  Learning to be myself:  It's so difficult.  At times it's felt impossible.  I've been so near the edge through all this.  So scared at times.  Close to needing a psych ward.  But it's essential.  And after the hell comes the self acceptance and the renewed smiles.

That's all.  Two thoughts.  Unrelated.

The Universe Laughs At Me Through A Song

The universe is laughing at me.

I didn't want to mass play a song today, post it on social media in two places and know I have to learn to play it.  That there is NO choice.  I didn't want to spend hours on the same 4 minute simple song.  Yet I find that something in this hits all the right places, just like all the minor 6th chords and tri-tones that got thrown into my playing this morning.  I got so lost in that piano this morning.  I really must get round to getting it tuned for the first time since getting married - which was nearly twenty years ago!

I most definitely didn't want to mass play a song about God that I don't even mentally agree with.

And it's totally certain that I didn't want that song to be a song from the Jesus Army.

But the universe doesn't give a shit what I want.  It does things to me anyway.  Most of us find the universe seems to have a carefree attitude towards our desires.  And most of the time the actions of the universe turn out to be good in the end.  Life is more fun that way, when there are unexpected bonuses from time to time.

So.  Here's the song.  https://www.youtube.com/watch?v=1Zfv1LZlU9U

Over the years the Jesus Army has come up with some truly atrocious songs.  I could give examples from the years in which I was involved with them.

And then there are ones like this one.  When the Jesus Army does something well, which to be fair is quite often, it really does it well.  It's a simple song.  A simple accompaniment.  In many ways if I applied logic and analysis it would seem like nothing special.

But the song, for whatever reasons, brings me both tears and peace.  And vibrato through bones and muscles and so much more.  There is something in this that bursts into and beyond every energy centre (if energy centres exist) something that I can feel on every level.  This is something that so much pulls at the physical chest, the inner core, that I can let it become the entire universe for a few moments.

When music is the universe, when all else ceases to exist, that is the best.  There is nothing better in my life.  Ever.  When I sing and play and all else vanishes and all that remains is vibration and spirit then that is bliss.  Bliss.  Does everyone sink into music so much that the universe disappears?

Of course, you might hate it!  That's OK.

I Am Autistic: My Path From Long Denial of Autism To Acceptance, part one

There. I've said it. I am autistic.

My previous blog post covered all that, a public statement, a very real coming out about my autistic brain. If you haven't read it and wish to, the link is under these words.  The first post provides some context to this one.

But how did I come to realise and accept this? How did my fifteen year rejection of an idea become acceptance of a truth? How did I come to be thankful for a truth that I could never properly consider before?

There were reasons why I kept steadfastly rejecting the idea, why I could not even begin to conceive that I could actually be autistic. I'd been able to joke about it – the joke came up too frequently, whenever I was over-literal in interpreting language, whenever I strongly exhibited any trait that would stereotypically fit an autistic pattern. But I couldn't take it seriously.

I couldn't deal with the idea until I'd dealt with gender issues and found some control, balance, happiness and hope in my life. While still indulging in self-rejection and self-hatred, while still seeing myself as a monster (or “abomination” as I thought the Bible said) I couldn't possibly have looked closely at the idea of autism.

I couldn't deal with the idea until my mother died. Unconsciously I believed in some way that I'd never hear the end of it if I took autism seriously. She would say “I told you so. Because I understand perfectly.” And she would say it too often for me to cope with. Of course, she might never have said things like that at all. But unconsciously I believed that she would and so could not face the idea.

And I couldn't deal with the idea because, in honesty, I didn't know enough about autism. Most of what I “knew” was based on stereotypes of very troubled children, very unruly or very silent or both. And I wasn't like that. I wasn't unruly as a child. I got on and did the school work without rebellion. And I wasn't more silent than others, at least not abnormally so. I didn't cope well through childhood and had lots of issues but I wasn't like that,was I? I wasn't like thosechildren in lurid TV documentaries. So I couldn't possibly be autistic could I? Asperger Syndrome was a silly idea, it just couldn't apply.

The only adult, openly autistic people I'd spent time around didn't help me either. They may not have been like those children but theytreated their autism as a guaranteed reason why they couldn't and wouldn't amount to anything in life. They said things like “My brain is deformed so there is no place for me in society, I can never be accepted.” They were without hope of a future which is a deep shame and a deeper shame when I consider just how intelligent they were and how much they had within them of wondrous quality. When the only autistic adults you know repeatedly say things like that then it's impossible to conceive that you too may be autistic, impossible to conceive that things may be just as hopeless for you.

Of course, now I firmly believe that these people were wrong. Not through their own fault but because of whatever had been told to them repeatedly as they grew up. It's so sad to know that there are people who, because of their autism, have been told that they are deformed, useless, of no value, and have come to believe it so strongly that nothing anyone else says can get through.

So for all the years of having this autism, Asperger Syndrome idea dancing in my head over and over again it was completely impossible for me to consider that it might actually be true rather than me just having a few coincidental similarities, sharing a trait or three. And I could explain those traits away. After all, as I told myself – entirely erroneously – isn't everyone somewhere on the autism spectrum? (No, most people are nowhere on the spectrum. There's my ignorance on display again.) So if I saw similarities it meant nothing. Nothing at all. Final verdict. End. Of. Story.

My perfectly held logical theories about my brain being nicely neurotypical began to fall apart only when I met other adult autistic people who didn't feel the same way as those I had met before. It was almost as if the universe knew I was ready for revelation and so began to throw autistic people at me. These were autistic people getting on with life, not letting their autism diagnosis get in the way of living. These are people with determination, people who believe in themselves and in their abilities. Yes, their autism can be challenging. Sometimes it can be very challenging indeed. But sometimes it can be helpful too. These are people who accept that their autism has helped to make them who they are and that in many ways they are better people for having autism, despite the challenges and struggles they have faced and still face in dealing with it.

These people, thrown at me by the universe, have changed my life. They didn't mean to do it but things cannot go back to how they were. I began talking with them about autism. About how it felt to be autistic – if “felt” is the right word. About their experiences. About symptoms. About expressing symptoms and about hiding those symptoms. I fully expected that taking to these people would kill the joke in my life. I'd be able to turn round and say that I was nothing like that. No, not me. I'm not like them. It's amazing just how defensive a person can be against an idea.

Things didn't work out that way. Rather, talking with these people began to confirm that the joke should be taken seriously. Very seriously indeed. I don't want to say much about the people I talked with. They should remain anonymous as I haven't got permission to write about them and reveal any specific information. So I'll say as little as possible. And the language will be gender neutral. Sorry if that language confuses anyone. They know who they are and some who are close to me know who they are and will know who I'm talking about in the next paragraph.

Very recently I've had long talks on autism with one particular friend. One of those autistic people the universe threw at me. It's a completely unexpected friendship for which I am utterly grateful in so many ways. On one day, having already spent much time talking – it was the sort of day when a drink in a café stretches to many hours – they decided to reveal their autism to me. Not that they are autistic. I knew that already. And having talked quite a bit I knew some of the theory of what that meant. But on that day they decided to BE autistic around me, to show the reality, rather than doing their best through hard effort to fit into a convenient neurotypical pattern for my sake.

So we sat in a café and my friend goes from being the person they had until that moment presented to me, drops many of the walls and ways of presentation, and appears before me as themself. Gosh, convincing a word processor that “themself” is a word is difficult. They were nervous about it but believed and hoped that I'd understand. That nervousness was normal – I won't say how they behaved in front of me (nothing immoral or outrageous or loud) but it wasn't the way most polite English people would behave in a café when with someone they don't know well.

Their belief, their hope was right. I understood. To be honest I felt very privileged to be seeing a reality that not everyone gets to see. I felt very blessed to have been trusted enough by my friend that they let me see at least some of what their inner life is like and what their manner of being can be like when not trying to fit in to what we are told is normal.

They told me they had thought I might understand. My response was that there was nothing to understand. They had acted much as I might wish to act if I didn't feel so guilty about it. It seems I find them and other autistic friends pretty easy to understand. It's everyone else I find difficult. It turns out that how they are is just the way life already is for me underneath all my own defences and attempts to fit in. I am told that this understanding of one set of people and difficulty understanding another says a lot about me.

My friend told me that they had decided that I am autistic. They weren't the first. Another friend told me they had spotted it on a first meeting. I find I trust my friends. They are intelligent. They have wisdom. And, crucially, they have personal experience.

Everything in my new friendships pointed in only one direction. Never before had it been a direction I'd been willing to look in but I like these friends. I respect and admire them for who they are, what they do and the challenges they give themselves in being the best they can be. Because of their manner of being I could accept that what was true for them – and what they recognised in me – might be truth for me after all.

I'd taken the journey from a belief in the impossibility of something to a belief in the possibility of something – and, grudgingly, the probability of something. But I had to know. I couldn't be satisfied with a “might”. I needed confirmation. Or denial – though by that time I knew that confirmation was the more likely outcome.

It was time to consider things very carefully. Very carefully indeed. To stop joking and get serious. OK. I might be autistic. I am told there is a good chance that I am. It was time to research and find out for myself.

A Post About Autism in the Life of a Woman Reborn

Throughout my adult life my mother worked to an assumption, a belief that could not be shifted.

She believed, wholeheartedly, that she understood me thoroughly. And that affected the way she acted towards me.

I have had a long history of mental health issues and I have spent my life not quite coping with that life in general, with relationships; with others and with myself. My mother would say to me very frequently, “You think that because you ...” or “You're doing that because you ...” Bless her, she was trying her best. But in the majority of cases I could only disagree with her conclusions. Her words to me showed consistently that she didn't understand me or the way my mind worked at all. She could not have understood me in any case – for I was, to all appearances, her neurotypical son.

And she had another habit, arising from my mental health history and a history of not feeling physically great without developing any obvious serious diseases. She would give me diagnoses. Many diagnoses of physical ailments and mental health conditions that would explain what she thought was wrong with me. A new diagnosis would crop up with alarming regularity depending what she had been reading or what someone on Radio Four had talked about that week.

All of my mother's possible diagnoses for me failed. All of them sank into the background and were quickly forgotten about. Or they were knocked out of their place by the next diagnosis.

All of them were wrong. Obviously and demonstrably wrong.

Except for one of them.

Probably fifteen years ago my mother came up with a new diagnosis. She had been doing some reading, following another health issue being discussed on Radio Four.

And I have spent these fifteen years having to deny that diagnosis. Reject it. Swear that there was no possible way that it could be the truth. Mother, you got it wrong again. Very wrong.

Fifteen years ago my mother diagnosed me with Asperger Syndrome.

I rejected that – just like I rejected every other one of her diagnoses. And yet it stuck. And stuck. And persisted. It just would not go away.

Too many things fitted. And later I aced the test available at that time to lowly lay people – the Autism Quotient test devised by Simon Baron-Cohen. There were other clues too that added into the pattern.

But I still rejected it. I could not be autistic in any way. Impossible. And, psychologically I couldn't accept the possibility that my mother was right in a diagnosis, even if that only meant accepting that she had struck lucky on one occasion. Perhaps, sadly, I am only able to deal with this now that she has gone. Most certainly I am only able to deal with this now that I've dealt with my gender issues, accepting and embracing myself as a woman.

There has been a joke about me in my family for years. The joke, which really isn't funny, is that I speak in certain ways, think in certain ways, act in certain ways because I haven't got Aspergers. I am who I am because I am NOT an Aspie.

I couldn't be. No. No. No. There was no way and I refused to look further into the matter. Except it kept popping up and there was no way to escape it for very long.

A great deal has happened recently. I've had to do a great deal of rethinking of my life and of my mind, my brain. There have been many revelations. Discoveries about myself. Discoveries about how I've used logical rules and brute force to suppress and reject things about who I am. Discoveries about just how much guilt and shame I've felt about these things that led, in part, to me building impregnable defences so the truth couldn't leak out.

A great deal has happened. I will be writing about it. I need to write many things in order to understand it properly for myself. And I need to write many things to explain quite how these things happened and how I can be so sure of my conclusions. But for today the writing needs only set out one basic fact of my being.

A great deal has happened: It's a process that has led from me rejecting any suggestion of Asperger Syndrome, any possibility that I am somewhere on the Autism Spectrum, to being one-hundred percent certain in my own mind that I am autistic. I. AM. AUTISTIC.

I've been having to come to terms with a lot. I've been having to strike down those defences. I've been having to start to learn to be who I am.

In a very real sense, for the second time in two years, I have had to come out to myself.

This accelerating process is proving to be very difficult for me at times. And combining it with suddenly having a very different set of hormones within me (As of a month ago I have been taking a testosterone blocker and increased oestrogen) is adding to those difficulties. There have been some awful days. And those around me have been subject to those awful days. At some point I will be writing about those awful days.

Realising this autistic truth about myself is not in itself a solution to anything. But it is a map, an explanation, a guide to why I am as I am. And that's a good starting point for gaining a better life.

It doesn't necessarily change as much as my revelations about my gender. But it's so much harder to deal with. All the gender revelations brought only joy, release, relief and understanding of much of my past. Coming out as transgender and living as myself, female, is pretty easy in comparison to coming out as autistic and having to work through so many things that are painful and have no easy solutions or simple solutions and sometimes, or often, will have no solutions at all beyond accepting them as part of who I am and getting on with life accordingly, without the old shame and guilt.

So, now I sit, impatiently.

I have been referred by the GP for a proper assessment for autism. I went to her prepared. I knew that asking to be referred for assessment would lead to the question “Why do you want to be referred?” So I took along lots of reasons, several pages of reasons to cover the very basics. I hadn't got a quarter of the way through when she cut me off and said “Yes, we'd better refer you.”

This referral may take a while, a long while, because like so many parts of the NHS, especially mental health services, there is a shortage of cash, a shortage of staff and a shortage of facilities. I crave the day the assessment begins or takes place. I can only hope the experts agree with me, and agree with autistic friends of mine, that this is the truth.

This is the truth:

I am autistic.

This is my coming out to the world. It may be premature since I am not officially diagnosed – not that official opinion will affect what is already truth. This is me. Coming out. En masse. Coming out as transgender was such a slow, adrenaline fuelled, tiring, terrifying thing. If I could do it again I'd get it over quickly. So here's a new coming out. To everyone at once.

I. Am. Autistic.

When School Government Targets Become More Important Than a Child. A Moan.

The school secretary just rang me.  Our child is at school, ill, needing to come home.  We only sent them in today knowing they could come home if too poorly to get through the day.  But the school wouldn't authorise child coming home ill because, through recent illnesses, they have just fallen below the government target attendance level.

So I just had a big argument with the secretary.  Child will now have a note allowing them to come home but "it won't be authorised".  Unfortunately I have to go out very soon so while I could in theory collect them I wouldn't be able to bring them home except via a two hour trip to town where they would just have to sit, very bored in an unfamiliar environment while I am at a music rehearsal.  Crap.  It's authorised by me.  Me, who saw how physically naff they were last night and this morning but who sent them to school anyway to try to do their best.  They're not well, but sometimes the body can surprise and provide strength to get through the day anyway.

Personally I don't give a monkeys about government targets - and since child is nearly top of the class in most subjects being off obviously isn't doing them much harm.  When a 14 year old gets A* GCSE level in science tests I'm not going to be too worried about their academic chances.  When they get Italian grades that shouldn't even be possible to get then I'm not stressed about them "failing".

I wouldn't be worried about academic chances either except that those bits of paper are usually quite useful later.  Happiness and authenticity trump any academic piece of paper.

Unfortunately the school secretary went on about the school having to meet the targets.  Don't want to send child home because the school needs to hit targets.  The secretary seems far more worried about a target than about child.  When government targets trump the well being of a child then those targets need to be abolished.  Immediately.  And when school staff are more worried about a target than about a child then the staff deserve to be sacked.  THE CHILD COMES FIRST.  Not the Department of Education.  Not the David Cameron idea of how things should be.  Not a target that might change after another election.

Yep, I'm one of those very annoying parents who is on the side of the child.  I'm not on the side of the school.  I'm definitely not on the side of the government.  I am on the side of the child, the person who should be served by the school and by the government's education policies.  And when a child is ill, then a child is ill.  It's not as if child is missing lots of school through truancy - and even if they were we would have to look at the reasons why rather than simply condemning the child or those who care for them.

I have to admit, my language with the secretary remained pretty calm.  What I wanted to shout at her was more along the lines of "I don't give a shit about your targets.  I care about the health and wellbeing of my child.  Why do you place an artificial target above children?  Is this through stupidity, fear, or anti-human evil?"  But no, it's not done to say things like that to school secretaries.  Saying things like that may be honest, but it's counter-productive!

The Measles Vaccine: I Am Told It Is A Terrible Thing

Scrolling down my facebook feed this morning I found this image and a link to an article on vaccination deaths.

On the face of it that's a terrible pair of statistics.  On the face of it, with just those numbers, anyone would be up in arms and call for the banning of measles vaccines.  With just those numbers, nobody would call for a return to the almost universal measles vaccination program in the USA in the 1990s.  Everyone would applaud those who stand against the pressure to vaccinate their children.

And of course the site on which the image is found must be a trustworthy medical site - after all the writer of the article and editor of the site has a BA in Bible and Greek so you know he knows a great deal about medicine!  As he writes in his testimonial, "Any health product, medicine, or natural cures are worthless if you don't know God and His incredible love for you, and understand His will for your life." With words like that you know you're utterly safe listening to whatever he says about medicine.  Perhaps that's enough sarcasm for today.

But of course there is another face.  Another side to those frightening statistics.  Those numbers do not tell the whole story.  As it turns out they don't tell the story at all.

Yes, I believe measles vaccinations work.  I believe they are a very good thing indeed. If you look at the number of deaths and hospitalizations due to measles before the introduction of the vaccines it becomes bloody obvious.  Excuse my language!

In the period before vaccinations were introduced there were 3 to 4 million cases of measles in the US every year resulting in 48,000 hospital stays, 400-500 deaths and 4000 cases of encephalitis.  This was a drop from 5,300 deaths a year a few decades earlier, simply because there was far, far better medical care in hospitals in the 1950s than in the 1910s.

So without vaccines and with medical care there would have been probably nearly half a million people in hospital for measles in the past ten years and probably 4,500 deaths and 40,000 cases of encephalitis. Taking the "facts" I was given this morning at face value, measles vaccination has cut the death rate massively.  And it is alleviated a stupendous amount of suffering.

But let's check the quoted "facts" from the above graphic.

"Fact" One - The "Zero". By 2000, measles had been pretty much eliminated in the US due to vaccinations. The CDC website states, "In 2000, the United States declared that measles was eliminated from this country. The United States was able to eliminate measles because it has a highly effective measles vaccine, a strong vaccination program that achieves high vaccine coverage in children and a strong public health system for detecting and responding to measles cases and outbreaks."  That CDC page is worth a quick read if you have any interest at all in vaccinations or measles - even if, like me, you are not from the USA.

With the lessening use of vaccinations it has returned and is slowly increasing. "Slowly" is what would be expected. You wouldn't expect many deaths from a disease that had almost been wiped out in the nation. Nevertheless, there have been deaths in the US. The above statistic of zero claims to be sourced from the CDC but I could give you direct links to the CDC site that prove the claim to be false. There haven't been many deaths, and that's to be expected, but those deaths exclude other side effects that measles has produced - brain damage, deafness, pneumonia and so on.

"Fact" Two - the 108. This claims to be drawn from VAERS. But VAERS cannot tell you anything about whether a vaccine caused a reaction. It does not track specific adverse reactions to vaccines. Hence such a statistic cannot possibly be drawn from VAERS in any sensible manner. Yes, at some point after being vaccinated against measles 108 people died. But to state categorically that this is because the vaccines caused the deaths is to completely reinterpret the data.

For more information on the problems associated with applying definite causation to the VAERS cases, I'd recommend this rather sensible blog page written be people who devote much time to applying science and sense to the claims of the anti-vaccination campaigners.  Lots of people with far more knowledge than me have written sensible pages online about vaccinations.  Why are you reading me instead of reading those pages?!  Trust those people, not me.  Because just like the author of the article that got me writing, I don't have a medical degree - just two theology degrees.

To conclude, as Newsweek states in this article,  "Those promoting this 108 number appear to be uninterested in widely accepted facts, and most don’t seem to understand the difference between correlation and causation. Or they just don’t care. Their primary interest, it seems, is in waging a PR war against the likes of the CDC. And if they win that battle, it could be a public health disaster for all of us."

Simple Words of Spirit - Received in a time of Complicated Doubt

January 2015. Written in darkness, in temptation to deeper depression – I realise that January is often like that for me, in a week of major doubt. Written in deep wondering whether God is real, whether Spirit is real, or whether I was just fooling myself with an idea, or a collection of ideas.

Like before I was told to pick up a pen and listen and write down what was heard. This time the words were simple. Simple concepts. Because when it comes down to it there isn't anything complicated about a call to return to what's already in the heart. Everything here is easy to understand – and actually easy to do if I let go of all the self-created obstacles. In truth there is nothing in the way of the spiritual walk or the path of learning to serve (are they the same thing?) unless we put it there ourselves.

Parts of the writing that came in the months before that night are more complicated – or at least less simple! Some of it I don't understand with much clarity at all. But this is obvious. A reminder of what is pretty much in lesson one for many of us. The previous writing won't get shared. And any further writing – once I'm quiet enough to hear again – probably won't be shared either. This only gets shared because of its simplicity and its broad applicability to the life of pretty much anyone at some time or other.

One thing – the phrase “the Christ” is a wide one. It doesn't have to imply being a church-going Christian, although I am one and am most definitely called to be an active part of the particular church of which I am a part. The phrase doesn't necessarily have to imply believing Jesus is alive or even that he ever was alive.  Take the phrase for whatever you want to take it.

Fooling myself? Perhaps. Are these words coming from beyond? Are they from somewhere closer to the essence and truth of the Self? Or are they just what my conscious mind says once all the analysis and over-thinking gets turned off? Or all three working together? Simple answer, I cannot say with anything approaching certainty.

Perhaps you have lost the way. But what is the way? And if you have lost it, can you not find it again and walk once more in the path awaiting you? You have allowed yourself to stray, to wander. You have allowed other concerns to impede the one concern. You already know how to return – to read, to pray, to meditate, to serve, to seek that purity.

And though you may at this time feel alone, you are not alone. Deep inside, at your core, you know that you are never alone. And you know that you were placed where you are for reasons beyond your imagination. You are not alone. I am with you. We are with you. Always.

All that remains is that you walk again, cry out again, seek again the within and the without. You can do it because you have strength and will be given strength.

You are tempted to give up. You are tempted to fall away. You ask if there is any point and you ask again whether that which is real is Real.

Do not give in. Focus on the safety. Focus on the revelations of the past until you reach again the revelations of the present – or at least the realisation that you are always in that place.

Again, you are not alone. Your essence is safe. I will be with you, for you, beside you, within you, embraced firmly in passionate love. I will never let you go and will continue to draw you, prod you, lead you and show you the ways into the Way, your Way, your Centre.

Remember the words – the Christ IS your path, the Christ IS at the centre of your being. Look to the Christ. Always. Unfailing. Unceasing. To the Christ. To the Victor. Return.

Return. Listen to the call and return into hope, into fire, into that growth into Being. Pray again. Sit again, alone with me. There is nothing to fear in Way, Being, Life. Come to me again and rejoice. This cannot be said enough. Rejoice. Rejoice.

That's all. You know what needs to be done. Look inside, find the answer. Rejoice. In love, rejoice. Return. In Christ, return. Recommit. To the path, recommit. You know it. Only you can do it. Only you. But never only you – never alone.

Yes, that which is real IS Real. Believe again. Know again. And again, run into reality.

A Big Moan. Totally Fed Up with the Lack of Progress in Gender Dysphoria Treatment.

Another week, another failed promise to be phoned by a consultant.
Another week, another week in which the next appointment hasn't been arranged.  Another week in which no useful information whatsoever can be given me by anybody.

Another week of chasing and pestering and talking to the gender clinic with piss all results.  I have contacted the clinic every single week for the past two months.  Every time I am promised that I will be called back, either the next week or the next day.  Two months into the chasing and I have not been called back.  I say this, and complain, knowing that the staff are very busy and that patient numbers are outstripping staff hours more and more.  But I also say this knowing that my hormone dosage could be sorted in a five minute phone call and quick fax to the GP just as easily as in a one hour consultation and posted letter to the GP.

And every time my next appointment is as far away as it ever was.  At my last appointment, on 2nd September I was told it would be three months.  I started phoning in late November and was told it would be December.  Then that moved to January.  That moved to late January or early February.  The current information is that the consultant hasn't dealt with the January list, that my appointment will "hopefully" be in February and that I am at the very bottom of a waiting list.

It is fair to say I am frustrated and to be honest getting quite desperate.  I've already complained officially so there's no point in complaining, but I might do it again anyway.

Started self-medding again - yes, I'm back on the pill - because mentally I have to do something or go completely crazy in the process.  Advice today was to keep self-medding and get more blood tests done just before the next mythical appointment so I can say "here are the baseline results, here's what they are on what was prescribed, here's what they are on what you were going to prescribe, therefore here's what is needed."

In three days I will have 18 months of what they call "real life experience".  All that time has been spent working through the NHS system.  According to national guidelines I can be referred for surgery six months ago.  But instead I feel that I'm practically at square one.

Life as me is good.  Far better than it was two years ago even with all the difficulties of that period.  But the whole medical thing is as annoying as anything.  Getting me down.  It's fair to say that the medical frustrations, combined with certain other things, are not helping in the slightest and are slowly sending me in a direction I don't want to be sent in.

Yes, it's all getting me down.  But it can't get me too down because then they'll want to sort that out before dealing with the gender stuff even though it's the delays in the gender treatment that cause these problems in the first place.  I can't allow it to get me into a place where I'd need professional help.  Because that would mean I wouldn't get the professional help I actually need.  And that would make things worse and I'd need more professional help, further delaying what I need.  In a vicious circle.

Advice:  If anyone is planning on going through the medical side of transition either win the lottery and pay for it all privately or develop a level of patience that far outstrips that of Job in the Bible.

Sadly of course I'm not alone.  Many people under the care of the NHS gender dysphoria services are in the same position.  Some are in worse positions, with longer waits and more uncertainty.  And sadly, as things stand, nothing much can be done about that.  The staff, from consultants to receptionists, know this all too well and every one of them wishes that more could be done.  But without more funding, without more staffing, the wishes of staff, patients and the friends and families of patients cannot be granted.  Sadly at this time the situation is getting worse rather than better - because there are more patients coming forward (which is a brilliant thing) but not the funding to match the numbers.

Until that funding comes the situation will continue and people with gender dysphoria will continue to suffer.  Some will develop further mental health issues while waiting to be helped.  Some will end up in hospital.  Some will self harm.  And almost inevitably, unless every single patient has a superb support network, there will be suicides and attempted suicides.  But the funding situation is most likely to continue, and perhaps - in terms of funding per patient - get worse.  Much of the NHS is underfunded.  We all know that.  But it often seems as if mental health services are the poor child of the NHS and that gender services are the poor child of mental health services.

Gaudete Sunday - A Sermon From Two Years Ago

Today is the third Sunday of Advent - Gaudete Sunday.  What follows is a the roughish text of a sermon I preached on this Sunday two years ago.  So much has happened since then and perhaps the sermon I'd write now would be very different.  But this is where I was two years ago.  Don't feel obliged to read it - it was much complimented on at the time and I still think there's plenty of good things here but there are also elements worth cringing at with some embarrassment!  And you'll have to imagine it in my style of delivery else something is lost.

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Allow me to take you back to December 13^th 1973. I understand that this will be more difficult for some of us than others. Some of you hadn't been born and I was only two years old so I can't remember it.

So there you were – or you weren't, but imagine that you were – sitting in front of your posh new 15 inch black and white television in 1973. You wanted to watch Top of the Pops and hoped to catch a glimpse of Marc Bolan and his new hit single. But on this occasion you were disappointed. Yes, Bolan wasn't on. The Children of the Revolution had been thwarted by tax evasion. Disappointing.

Instead, who did Tony Blackburn introduce? Cozy Powell from Black Sabbath performed “Dance with The Devil” and in a zealous moment you wondered if a Christian should be listening to such things. And then there was bunch of strange looking English folk singers, all men apart from one woman in the middle and none of them with so much as a musical instrument. This isn't T. Rex, this isn't even Slade – though they'll be on later with a song that still haunts us forty years later. What's going on? Can things possibly get any worse?

And then the men start to sing. In folk singer voices. In Latin. Good grief, why on earth would anyone buy this? And then the woman pipes up, several octaves higher than anyone else.

Yes, this was Steeleye Span, and this was one of their two hits and though I've seemed to insult them, I confess that by my teenage years I'd bought quite a few of their albums at car boot sales.

Here's what they sang, with only one wrong pronunciation that I won't repeat here:

Gaudete, gaudete, Christus est Natus, ex Maria, virgine, Gaudete...

So, why on earth am I singing you a sixteenth century Scandinavian song in Latin that was a surprise hit 40 years ago?

Today, as the liturgical experts among you will know, is Gaudete Sunday. (sing again)

Gaudete is a word we translate as rejoiceand the day is named, not for that song but for the first word of the reading from Philippians that we've heard. That verse traditionally was also the entrance antiphon in the Catholic mass and in higher church Anglican eucharistic services – the verse spoken or sung right at the start of the service even before the priest had a chance to say hello.

It's advent. You might have noticed that. It's a time of penance. A time of preparation. A time of great meditation on the first coming of Jesus and a growing expectation of him coming again – both into our lives in new ways and at the end of time when he returns in glory. Which I predict will not happen on the 21^stthis year.

I know that most of us (myself included) do not make any big changes to life for advent. But it was and is and actually should be a time of fasting, without which the great feast of Christmas loses some of its meaning. And that's hard work.

So here we are half way through and the church says to us, well done people you're doing well, not long to go now and you can have a big party. But we think you could do with a bit of encouragement today.

So we arrive at our nice traditional service, having been doing all the traditional Adventy disciplines. We are tired, cold, a bit hungry and on our knees seeking God with an earnestness that we didn't have halfway through November.

And suddenly a voice cries out “Rejoice always in the Lord and again I say rejoice”. Here is our encouragement. Rejoice. The Lord has come. The Lord is here. The Lord is coming. He who loves you says to rejoice and to do it in him and through him and with him. It's not only something you can do, it's something that you are commanded to so.

So we've come to our text for the sermon “Rejoice always.” It's taken a while and I feel like a mild version of a preacher I was listening to recently who, 20 minutes into his talk said the words, “and so to the sermon” and began from there.

Now there's quite a lot to say about these two words. I thought I'd have an easy job with this one. Preach on two words and it will be quick. But I can pretty much guarantee that nobody has slaved over a sermon in this place quite as much as I've slaved over this one. What is a short sermon is turning into a book on the meaning and practical application of these words. I'm actually quite shocked at how much there is to say and at some of the directions my thoughts and writing have gone. “Rejoice always”. Seems pretty simple. But it is rich and deep and when you start thinking about all the reasons why we don't rejoice, all the reasons why we should rejoice, how to learn to rejoice always and the benefits of rejoicing – among other things – there's far too much for a little sermon. Hence my slaving on a book that perhaps nobody will ever read but me. So here I can only say two or three things about rejoicing – and those only briefly. Here we go: The sermon proper, in three very quick and incomplete points...

Point One– Don't get guilty

There's just a possibility that you may not be rejoicing at this moment. Please, please do not feel bad about that or think that because you're in effect breaking a command from God that you are a terrible person. You're not.

For years I suffered periodically with bad depression and sometimes Christians were the worst people to have around me. They would pile on guilt and just make me feel worse. “God loves you, why aren't you joyful?” “You need to repent of your depression”

In Morning prayer before advent one of the regular readings is from Psalm 42 and every time, the last verse sent involuntary shudders through me. We read “Why are you downcast O my soul … hope in God.” That's fair – and hoping in God can and does in time ease a lot. But people would tell me that I had no right or reason to be depressed and thought that just telling me to hope in God would solve everything. When it didn't I was often made to feel like I was a bad person. Or “I was depressed and I prayed about it and God took it away -so I don't see what your problem is.”

And then I'd want to make these people happy with me and also to make them shut up. So I'd put on a false joy. I'd act my way through life with false smiles and a forced joy that in the end only made things worse because I was living a lie.

So, don't get guilty if you're not a bundle of rejoicing now. And don't feel guilt if you are currently mourning or grieving or want to be weeping – that's part of a balanced Christian life too, just not the subject of this particular talk.

Yes, sometimes people pray and a miracle happens – they are given the gift of joy. But more usually that doesn't happen and while they may be given seeds, it takes time and a lot of effort to prepare the ground so that God may grow the fruit of joy in us. That's far more common – rejoicing always is a command but it's a command to grow into as the fruit is grown within us.

Point two– the seeds

There are lots of seeds that lead to a life of joy. There are worldly seeds – all the blessings we enjoy, all the positive things in our life. Bing Crosby and the Andrews Sisters (and others) sang the song You've got to accentuate the positive....

Accentuating the positive is good. Focusing in on the good things of life. Family, friends, home, food, health, and so on and so on. Practising finding the positives is a good habit and practising thankfulness for those positives is even better. No matter what you are going through there will be positives in this worldly life.

I've looked back at my own life. Five years ago I wrote a list of positives in a few minutes and I found that list recently. A page filled with them. Twelve years ago I was in a mental health support group and we all used to write lists of positives. On some days my list struggled, with an hour's work over it, to contain one thing. Yet as I look at the list from five years ago, many or most of those positive things were true twelve years ago but at the time I was in such a state that I couldn't see them. Take from that what you will.

Finding those positives is good. But these earthly blessings are not actually the major basis of our joy and our rejoicing as Christians. (Joy, from this reading, by the way is the Greek word Chairo which isn't a joy of bounding about everywhere in a manic glee but rather a quiet calm within, an inner peace and warm fire that suffuses from a deep root within us into every corner and crevice of our lives, into all the nice things that happen and into our greatest suffering too so that we rejoice even in our deep pain – which we all have and mourning and grief have their place too.)

No, the earthly blessings are not the main basis of Christian joy. For the simple reason that they are transient. If our joy is based solely on friendship, a nice house, having tasty food for tea, our marriage or anything else – and these things are very good – what are we going to do if we lose these things. If our spouse dies and we end up homeless eating other people's leftovers, can we rejoice then? The gospel of true Christian joy says that we can.

We need a more permanent cause for our joy, a cause that cannot and will not fail us. And that cause is God and that cause is what he has revealed to us in Scripture. There are lots of Scriptures about “rejoice” - nearly 200 of them, and loads more about “joy” and studying and praying with these verses can be an excellent way of filling our hours.

Vine's dictionary gives a nice list of reasons for believers rejoicing (chairo). Here's part of it. Believers rejoice: in the Lord; His incarnation, His power, His presence with the Father, His presence with them, His ultimate triumph, hearing the gospel, their salvation,receiving the Lord, their enrolment in Heaven, their liberty in Christ, their hope, their prospect of reward, the obedience and godly conduct of fellow believers, the proclamation of Christ, the gospel harvest, suffering with Christ, suffering in the cause of the gospel, in persecutions, trials and afflictions, the manifestation of grace, meeting with fellow believers …

lots of reasons but the only one I'll mention now is the one sung by Steeleye Span.

Gaudete: “Rejoice, rejoice, Christ is born of the Virgin Mary”

I don't need to say anything about it either – you'll be hearing lots more about it in the next fortnight. Christ is born. God is with us and will never leave us. Salvation is here. Hope is here. True life is here. Forgiveness is here. Rejoice.

Wonderful. There is so much to say about the vast riches of the gospel and why this will – with much prayer, meditation and sharing together – become firmly rooted as the foundation of our life, welling up into a life of calm, unshakeable joy. I'm not there yet myself – but I am resolved to keep moving in the right direction.

Point three – the work.

Some of you won't like this bit. The hard work. Just two verses for you from the New Testament:

Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God. (Heb 12:1-2 KJV)

Joy was set before Jesus.

A simple question: How did Jesus reach that place of joy?

A simple answer: He endured the cross. Another verse:

Then Jesus told his disciples,"If anyone would come after me, let him deny himself and take up his cross and follow me. For whoever would save his life will lose it, but whoever loses his life for my sake will find it. (Mt16:24ff)

Joy is set before us. Jesus has it and we (hopefully) want to come after him and have it to. So how do we do it? Jesus himself tells us “"If anyone would come after me, let him deny himself and take up his cross and follow me.”

I know that's a tough end to a sermon. But we have to take the words of Jesus seriously. If we want to come after him into that place of joy and ultimately to be seated, reigning with him as co-heirs, then we have to seek to do what he says. Deny ourselves. Take up the cross. And then, and only then, can we truly follow him.

Joy will not come to us by seeking the experience of being joyful. True, deep, permanent, all embracing Christian joy will only come to us as a consequence of living a Christian life in imitation and love of Christ. That's the only way – and any preacher who gives you any other way, some easy way out is telling you fibs. Joy is not to be pursued as the end in itself – it is the by-product of a relationship with each other and with the living God. Without that relationship there can be no true Christian joy. Without self-denial, serving others, generosity to others and living to serve one another true Christian joy cannot blossom into the beautiful thing it is.

And so back to Advent for the next week. Back from this wonderful call to rejoice and into the season of advent. The fast, the self denial, the cross bearing. The path to the great joy that we will all, god-willing, experience when we celebrate the first coming of Jesus in just a few days and all the staggering, amazing things that means for us.

Let us pray:

Love is the heartbeat of God listen to the rhythm
Joy is its gift, catch the rhythm
Peace is its result, Live the rhythm
Be drawn into the kingdom of God .

Lord whose light shines in the darkness, Have mercy upon us,
Christ whose birth gives hope to all creation Have mercy upon us,
Lord whose advent brings us joy and love Grant us peace.

18 Months - The Best of My Life

Eighteen months ago tonight I came out to myself as transgender, as a woman, in a way which left no possible room for denying the truth about who I am.  That night was the end of a process of finding space, of allowing myself to explore my thoughts and feelings with an honesty which had not been possible before.  On that night I stood in front of the mirror in a skirt and blouse, for the first time able to dress in such clothes without feeling great shame.  And I recognised myself for who I am.  I spent much time talking with myself as I stood at the mirror, and welcomed Clare into her existence - I already knew my name through dreams.  Until that night I could, had I so chosen, locked everything away again and gone back to the way things were, put the recent thoughts and experiments down to an aberration, a mistake.  After that night there was no possibility of going back.

That was the end of a process of experimenting with self-honesty but it set the course for the rest of my life.  Eighteen months on I look back and can say that it has been the best time of my life.  The best.

Here are just some of the things that have happened:

• My mother died of cancer.
• My father became seriously ill with dementia.  He's now in a care home having spent several months in hospital.  He broke one hip while in a different care home.  He broke the other hip while in the hospital.  And being hundreds of miles away I've been able to do nothing to help him and have had to leave everything to other family members.
• My cherished Christian faith died, very painfully, over the course of a year.
• We've had all the usual sort of family problems here - plus a few more.  But I don't talk of those online.
• I have been sexually assaulted.  The police couldn't find the assailant.
• I have received much verbal abuse in the street for dressing as I dress.  Thankfully that's pretty rare now but to being with it happened pretty much every time I left the house.
• I've spent sixteen of the eighteen months waiting for medical treatment.  That treatment has only just begun.

Yes, plenty of horrible things have happened.  Most people would say that the year in which they basically lose both their parents, their faith, and undergo abuse and assault would be among the worst in their lives.  Circumstances have indeed been pretty poor in many respects.

So how can I say that the last eighteen months have been the best of my life?  How bad must the experience of my first forty years have been if so much can have happened and it still be my best time?

It's simple.  I have lived these months as myself, free.  I have learned to love myself.  I have learned that the truth of who I am does not to be utterly crushed, despised.  I have learned that I am not a thing of shame.

And I've remembered and healed a lot of my past.  All the clues and thoughts and acts that I'd suppressed for so long.  Many painful memories and many confusing memories.  They're still coming to light now.  Just this week I remembered things from my childhood.  Words said to me by my parents - who were of course doing their best but in the 1970s couldn't see past their little boy.  But words that led me further into Hell and the long attempt at self-annihilation.  Remembering them hurt.  A lot.  But now they can be left behind and peace can be found.  Some of that language may sound over dramatic.  I promise you that it isn't.

It's been the best eighteen months of my life.  And that brings my past into sharp relief.  I knew it was bad.  For thirty years even the best of days contained the shadow of depression, ever felt.  So many episodes of mental illness.  So many years of not knowing if I'd be alive by Christmas.  So many years in which others had to suffer through that uncertainty.  Looking at photographs from my life is hard as there are very few in which I cannot see signs of that shadow.  Even on the days of many smiles those photos display pain, if you know what to look for.  Comparing my present with my past shows me just how awful my inner life was for all those years.

There are a lot of challenges involved with being transgender.  But the chance to be who I really am outweighs pretty much any rubbish that life could throw my way.  Because, accepting myself and being Clare took away the cause of that shadow of depression

I've lost friends.  But I've gained more friends.  And my wife and child stand by me giving full support for me being who I truly am.  I am truly fortunate.
I've lost that faith.  But I've gained a better faith.  And have written much about that wild journey.
I've cried many tears in the difficulties.  Many more tears for my parents.  Many more tears as the past has come to light and been grieved for and healed.  But I've also learned the meaning of crying tears of joy.
I've suffered transphobic abuse.  But I've grown stronger through battling onwards regardless.  And I've been fortunate.  The abuse has only been verbal.  I know others who have been less fortunate.
I've been sexually assaulted.  There aren't many "buts" to that.  But it could have been a lot worse than it was.  Many women are sexually assaulted.  I don't want to belittle what happened to me but so many women have suffered far worse assaults, or repeated assaults, or rape.  I count myself fortunate.
I've experienced fear as I never felt it before.  But I've overcome that fear in walking into freedom.
I've lost my mother.  But that last year was precious, to be able to share just that short time with her, knowing she was proud of her daughter.
I've lost my father - though he is of course still living.  I must admit that the silver lining is harder to find when I think of him and the sadness we all have for everything that his illness has brought to him.
I've remembered much pain from my past.  But I've been able to clean those events and words, repair wounds, and leave them behind so the future can be better.
I've waited so long for treatment - for the physical help in being who I am, having transitioned mentally and socially last year.  But the treatment has begun, just about.  I'm now on the lowest dose of oestrogen and waiting for my next appointment which should lead to increased hormonal treatment.  Waiting impatiently - as every timeline I've been given in the last eighteen months turned out to be a false expectation.  That next appointment, from what I was told, should have been this week.  It will be next year.

I know who I am.  And I accept who I am, embrace myself in love.  That in turn enables me better to receive love from others and to show love too.  The changes are immense.  I find myself doing things, frequently, that the old me wouldn't have done.  I'd either not have conceived of being able to do them or felt great shame that I couldn't do them.

I know that there is still quite a way to go.  The healing is not complete.  And without too much trouble I could make a long list of things I don't do but would be better for doing.  And a list of things I do and say that would be better left undone or unsaid.  A long way to go but the difference between now and then is to me nothing short of a miracle.

Yes.  The past year and a half has been full of the most difficult things I've ever faced.  Full of pain.  Full of challenge.

Yes.  Those months have also been the very best of my life so far.  The very best.  By a very, very long way.  Simply because they have been lived free.

Honest Thoughts About My Father - His Dementia, His Care, His Being So Far Away

This is the day my dad finally leaves hospital for a new care home - the same one that was looked at in the summer before social services moved him to a completely different one without anyone's permission or consultation.  That was awful.  My cousin (why my cousin?) was phoned and asked if he could collect my dad the next day and take him to a different home.  None of that had even been mentioned to my mother and moving my dad wasn't discussed with anyone.  It was a done deal before any family member knew anything about it.  My mother hated the fact that she wasn't consulted, that she had no say whatsoever in the care of her own husband.  That was pretty heart breaking for her.  Yes.  Social services broke the heart of a woman who was dying of cancer.  It's as simple as that.

My dad has been in hospital for very nearly 3 months having broken one hip in the care home and then broken the other in the hospital.  For legal reasons I cannot write about the circumstances of the falls that led to either broken hip.  The new home looks pretty good - certainly better than the old one.  I can safely say that much, based on Care Quality Commission reports.  The report on the old one talked a lot about under staffing, people left very unsupervised.  Including the inspectors finding one person left alone, naked, hanging over a bath.  To think of people paying £800 a week for that to happen is shocking.  The report on the new home has lots of nice green ticks and none of the red crosses in the report on the other home.  Reading the report on the old home was so worrying.  I never passed the report to my mother.  That would have broken her heart even more to think of my dad being there.

It's a relief that he'll not be in a hospital room all day every day but be somewhere where specialist care - nursing and activities and so on - are offered.  And it's a great relief that the CQC reports I've read are not scary but say that residents are well looked after.  It's still annoying though.  My brother visited the new home back in the summer and it was thought that when my dad was moved from the first home he was in it would be to that one.  We thought it was basically arranged.  Four months on he's going there, recovering from two broken hips he doesn't know were broken and with various extra health issues picked up along the way.

It would be so good to be there in Sussex and be of some use.  It would have been so good to be able to have been there for him through the months.  So frustrating to be so far away and to be basically useless in any of this.  Family there have had to pull all the strings and be the visitors and they've been marvellous in finding the care home, liaising with social services and in sorting the finances.  They deserve so much credit and thanks for all they've done.  Shame I couldn't be there but for a number of reasons (which haven't been mentioned online or have just been hinted at) it's not been a possibility.  Hard not to feel deep guilt even though life had to be as it has been.  If only I could be in two places at once - supporting him there and supporting those non-online things here.   And we can all say 'if only', so many times.

I have considered the possibility of moving him to a care home up here - definitely not the local one though.  But up here there's only me and down there is a wide family and in theory friends too - though the latter are invisible.  Had that support network not been there I'd have definitely sorted that somehow.  Though I don't know quite how you move someone from a hospital in Surrey, under the care of Sussex social services, to a care home or hospital in Tyne and Wear.  In the end it may be better if he moves here if there's a decent enough home that can be got to regularly.  That might end up being better for him - certainly better for me because I could be of some use and keep up the visits - but that's not a decision for now.  Have to see how things pan out into next year.

I may have to cancel the essentials at some point soon and go down and quickly clear and sell a house - depending on what the rules are about paying for the care that will either be urgent or not.  I look at those essentials and wonder how or when.  It depends whether care is dependent on the money being in the bank of if there will be an account to be paid once the house is sold.  I should know about that soon.

And then thinking about those essentials, all that needs doing, and grieving for many things, my brain fries - it's very fragile at the moment.  I've put a little of that online but only a little - I'd prefer to focus on the good things most of the time if I can rather than focusing on just how close I came a few days ago to using a knife in a less than productive manner. Years after self-harm the memories and mental scars remain and the knowledge that in the very short term it helped get me through a hundred inner crises.

Nobody knows, or can know, the prognosis for my dad.  Two years ago nobody could have known any of this, or known that my mum wouldn't be there.  Less than 13 months ago they were here.  He was ill of course but we were still able to do so much.  This illness rather ignores the words of Terry Pratchett that a person with dementia can still write several novels.  His deterioration has been rapid.  That may continue or he may plateau.  Impossible to say.  I just hope that in the time and health that remains he will be reasonably content in the new home, will be well looked after and that if he eventually ends up here the local care home would be just as good.


Of course most of us are at the stage where we have to be honest and say that, for his own sake, we'd prefer him not to stay alive for too long.  It goes against my old Catholic instinct of saying that life is God's gift to be cherished in whatever form it takes.  But it's how most people come to feel about any close friend or relation with dementia.  For him to die while he still has something, while he can still find an enjoyment is a far better image than thinking of him utterly helpless, unresponsive, unfunctioning in the corner of a room for year after year.  It is an awful feeling to almost wish your own father would die.  But it's a common one when we witness so much suffering, so much emptying out of the person who used to be there, so much damage to the brain.  It's hard not to feel deep guilt about it all even when you know that it's entirely a matter of mercy not malice.  It's clear to me that life should not be prolonged at any cost, that life is not just the beating of a heart.  And even in the hospital, at a time when he was pretty sick, there was a DNR order for him.  That was decided upon by the family there but I was in full agreement.  If he goes, let him.  Don't save him for a continuation of the decline.

It would be so good to get there this year to see my dad (and to sort that house some more).  But looking at things as they stand I'm guessing that probably won't happen - I guess at February.  And possibly by then he won't know who I am - he just managed it during the summer but of course could only know me as he not she.  Which was fine.  He's the only person on the planet I'm happy to have refer to me as he.  Because it's not his fault.  I wish he could have got to know me as she before getting ill, but this is life and we so often can't have what we wish for.  We'd all wish for many different things if it would ease the suffering of ourselves, our loved ones and seven billion strangers.

I just hope that in the new care home, with proper care, he will be reasonably content and find things to be able to smile at, while smiling is a possible.  I hope he settles there and is encouraged to be as active as possible.  I hope that, whatever the illness continues to do to him, he is more or less at peace whether living in a real world or a world that is only real to him.  I hope so.  And I will see him again, when that can happen.