Clearly, I Am the Problem – Neurodivergence

Over the years I have encountered many reactive and defensive behaviours in my interactions with people, mostly men. It seems to me that I do not do the ritual arse sniffing in the way they expect. Nor do I play the laddish itchy back game with enough ego stroking. The worse reactions are from men around 40. By the time they get to 60 they are past most of the BS. I do not piss up the wall of the urinal in the correct manner, apparently.

Clearly, given that I am the only common factor in all this, I am THE problem.

Chris Packham has been doing a TV series on neurodiversity in which he gets people who are diagnosed with various syndromes to do a short film to portray their experiences to their nearest and dearest. Most of the “weirdos” seem interesting to me and fairly high functioning. They are not boring.

The gist is that many feel/felt stress trying to fit and comply with the harsh societal expectations.

No matter how hard they tried they did not fit well and the “diagnoses” gave them a handy explanation for why. It brought relief and sense-making.

My own experience working with the diagnosed is that the worse thing “normal” people can express towards them is impatience and huff. If people are impatient, it causes fear and upset. It leads to internalisation and makes any attempt at expression far worse and more dreaded. Impatience could be said to be an enemy of neurodiverse inclusion. Impatience is the start of a far from virtuous circle.

“You should not be like that. It ought to be easy. Huff!!”

This is the foundation stone of cruelty directed at the different and the stick used to marginalise them. May be they/we are not the problem. Maybe it is the self-righteous and self-important “normal” people. These people who are highly impatient and immediacy fixated.

I know by experimental measurement that I am not neurotypical. I have measured my brain waves using a fast Fourier transform electroencephalograph. Mine differ in that there is way lower neuronal activity which I can also further silence.

It would be impossible to convey my state of mind in a film. Because “normal” people cannot handle neuro-silence and their internal dialogue would start to chatter. If you cannot be quiet mentally you simply cannot get it.

Felix, the stray cat, is unwell. We think we are in the palliative care regime. When I go to feed him and Gandalf, he gets under my feet and rubs himself against my legs. I have to pick him up gently with my foot and “throw” him out of the way. He thinks this is an ace game. Because of my arthritis I am not steady on my legs and stopping and starting is difficult. One day I may stand on him in a painful way.

There is no way that I can explain to Felix that if he is hungry the best thing to do is to get out of my way. Food would arrive quicker and with no less certainty.

It is very difficult to convey how and in what way one might differ. It has to be experienced personally to be fully grasped. All the rest is extrapolation or intellectualisation.

Upcoming I am going to be looking to have my hips surgically replaced. Already I am thinking about how I might behave so as not to get a strange reaction from the surgeon. I will not fit his mental models and there will be a disconnect. Yet I have need of surgery.

How much will I have to act and conceal and hide so as not to be THE problem?

How much will I have to reel myself in?

Is Preparation Bad?

I tend to prefer to be very well researched and prepared for most of the things which I get “into” or approach.  I like planning and scoping. It does not matter all that much to me if what I scope ever has fruition or not. I like wide global views and to consider implications. Other people, it seems, like to wing it or at least try. I’ll speculate that my envisioning is wider than most. I probably research to an extent which is beyond normal.

I am pretty sure that my predilection for this has pissed people off from time to time.

In answer to my question, planning can be bad in a socio-political sense. Others don’t like it.

It might be soothing for me but it can get the backs of others up and make then a tad hoity toity. Being well prepared can cause dis-ease in others. It may challenge sense of control.

In as far as I can tell I have put the nose out of joint for quite a few people who consider themselves experts and others who have had a bad experience of schools, and teachers. Self-important reactions are easily triggered. Planning by self can exclude input from others. People do not like having Ph.D. viva examinations from, me, Joe Bloggs who looks like a pikey.

People accustomed to being experts can be wary of the well prepared. It is easy to get very defensive reactions. Many are insecure in their knowledge.

I personally do not like to make stuff up on the spot because it can lack accuracy.

It seems to me that some people find my practice of preparation threatening in some way. I don’t need to talk things through to understand.

It takes all sorts…

It looks like I have gone and offended some people again…

phew…

1984 Quotes – George Orwell


“Orthodoxy means not thinking–not needing to think. Orthodoxy is unconsciousness.”


“Being in a minority, even in a minority of one, did not make you mad. There was truth and there was untruth, and if you clung to the truth even against the whole world, you were not mad.”


“If you want to keep a secret, you must also hide it from yourself.”


“If you want a picture of the future, imagine a boot stamping on a human face—for ever.”


“It was a bright cold day in April, and the clocks were striking thirteen.”


“Doublethink means the power of holding two contradictory beliefs in one’s mind simultaneously, and accepting both of them.”


“Sanity is not statistical.”


“The object of terrorism is terrorism. The object of oppression is oppression. The object of torture is torture. The object of murder is murder. The object of power is power. Now do you begin to understand me?”


“We know that no one ever seizes power with the intention of relinquishing it.”


“The Party told you to reject the evidence of your eyes and ears. It was their final, most essential command.”


“Don’t you see that the whole aim of Newspeak is to narrow the range of thought? In the end we shall make thoughtcrime literally impossible, because there will be no words in which to express it.”


“The past was erased, the erasure was forgotten, the lie became the truth.”


“Those who control the present, control the past and those who control the past control the future.”


“Reality exists in the human mind, and nowhere else. Not in the individual mind, which can make mistakes, and in any case soon perishes: only in the mind of the Party, which is collective and immortal.”


“All rulers in all ages have tried to impose a false view of the world upon their followers.”


Bioethics, Genetic Testing and Notification

This morning, just for a change, we went to another hospital for a genetics follow up to the wife’s breast cancer. In France they are very keen on prophylactic measures and like to test things in a lab wherever possible. The wife’s blood is going to be screened for genetic predisposition to breast and ovarian cancer. The results will have implications for her and her siblings, including the men. In French law the geneticist or the wife herself MUST inform her brother if the tests suggest that he too might have a predisposition for cancer. This true for if he lived in France not sure if it extends legally to the UK. The form letter on the government site, for the geneticist to fill in, does not really hide the identity of the provider of genetic material very well. Today she advised against sending this. It was better to pass on the tidings of joy personally.


« Décret n° 2013-527 du 20 juin 2013 relatif aux conditions de mise en œuvre de l’information de la parentèle dans le cadre d’un examen des caractéristiques génétiques à finalité médicale.

Notice : la loi no 2011-814 du 7 juillet 2011 relative à la bioéthique a modifié le dispositif d’information de la parentèle dans le cadre d’un examen des caractéristiques génétiques introduit par la loi no 2004-800 du 6 août 2004 relative à la bioéthique. La personne concernée est informée, avant la réalisation de l’examen de ses caractéristiques génétiques, de l’obligation qui pèse sur elle, au cas où une anomalie génétique grave serait diagnostiquée, d’informer les membres de sa famille potentiellement concernés dès lors que des mesures de prévention ou de soins peuvent leur être proposées. »


The gastroenterologist following my colon cancer has been very pushy about me notifying blood relatives because there is some genetic component to colon cancer.

I have already tested for HBA B27 which was negative therefore there are no requirements for notification. There are no possible interventions foreseen.

I am considering HFE and JAK poly screening, the latter of which costs ~€1500. The HFE if positive would indicate hereditary Haemochromatosis which can have interventions. The JAK poly screening for predisposition to malignancies, would if positive, require notification. There would under law be an obligation to inform.

This explains why the GP isn’t overly keen. There is a possible can of worms attached.

The documentation for the test today has inherent in it an authorisation to share genetic test results with relatives if relevant to their healthcare.

Given the price of the test, I am likely to need a specialist to write the JAK screening prescription. They may well want a “who do you think you are” family tree.

You learn something every day…and given the French love of protocol this is non-negotiable.

There are often implications we do not consider…and only find subsequently.

Once you have had test results you cannot un-have them or un-see them…

Hmnn…

High Haemoglobin High Ferritin Normal TSAT – More tests?

Following on from the visit to the rheumatologist I have had my ferritin and transferrin saturation levels tested again today. This rules out hereditary hemochromatosis so no need for HFE genetic testing.

It does not rule out liver disease though my liver enzyme tests were good a month ago. It can be due to chronic inflammation, which I have. It can be due to alcohol misuse but the level has gone up and I am completely on the wagon for four months now. She suggested JAK poly gene screening for myeloproliferative neoplasms (MPNs) to help explain the polycythaemia and to definitively rule out these rare malignancies. The GP said that this was very specialised testing and would need a haematologist to authorise. We will see the wife’s haematologist next week.

As is so often the case one test instead of closing options / diagnoses, opens others. My upcoming sleep apnoea study might add another clue to the mix.

In 1994 I was bled on a regular basis at St Thomas’ hospital to try to address the high haemoglobin levels. They took several “armfuls” … But memory says this increased the haemoglobin levels a few weeks after they pulled the pint.

Maybe I should buy some leeches and have a DIY approach.

I have just found out that I also have mild osteoporosis in the hips which is fairly normal aged related and lower bone density in my spine, osteopenia, slightly more advanced than normal for my age.

Must get a hamster wheel or a challenge reward maze from Amazon…

More questions…

Arhats Pratyekabuddhas and Bodhisattvas – Hagiography

I have a pet theory that the hagiography of all religions exaggerates and glosses. From knowledge of human behaviour and Chinese whispers, things passed down get embellished so as to confer kudos on the teller, the raconteur. Rarely are things made greyer and more boring. This means that taking things with a pinch of salt might offer some balance.

To the faithful there is nothing quite like a miracle to prove truth and religious figures are given, in narrative, super-human abilities and qualities. These days they would be told with enhanced computer CGI and special effects on a big budget. Bigging up martyrs and buddhas is good PR for the various churches. Who in the past had control of the proles as a raison d’être. The Sacerdotes have always had ritual magic and theatre in their playbook. Simplifying the message to an all fire-consuming hell and blissful pearly-gated paradise could be writ large on the side of big red double decker “Brexit” bus. Nobody could come back to provide a TripAdvisor rating for either holiday destination.

What if all that exaggeration has gotten completely out of hand?

Christianity, depending on flavour has a host of saints. Jesus’ crew, his disciples, are sanctified and portrayed. That depiction has taken place over two millennia. They are represented as holy. When if you think about it, they were learners, disciples, in the act of being taught and trained. Similarly, Buddha’s sixteen {18} arhats are seen as holy, saintly. When they were hanging out listening to Buddha and learning his ideas. It is said they achieved enlightenment. Lessening of burden is enlightenment, full liberation may not be the same as the partial enlightenment.

People pray to the saints and the arhats.

The canon’s of both Buddhism and Christianity were/are written by human beings and therefore by logic are coloured with bias and wishful thinking. There may well be some idealising.

Mahayana promotes the bodhisattva ideal where enlightened or near enlightened beings come back to teach out of the kindness of their hearts for the benefit of all sentient beings. This is seen by some as more worthy. Whereas the haughty arhats are too arrogant to teach, the pratyekabuddhas who do it all by themselves are not sufficiently omniscient to teach. They leave no legacy. They shun the sangha; they are not one of the gang. They are too arrogant, snobby, aloof, to be with normal people. The arhats, perhaps at one with the awesome and austere nature of reality and universe, lack the cosy human compassion are biased against and not as “nice” and the smiling friendly bodhisattva. They cannot be arsed to come back time and time again, the bastards.

People who do not know what these states of consciousness are like, make judgments thereupon. This {scholarly?} interpretation gets incorporated into the ongoing cannon, the creed, the gospel. People like definitions and will roll out comparison between, all knowing, earning bragging rights about something which they do not know. One could look it up in “Buddhism for Dummies”.

Religious thinking likes its “signs”. A rainbow appearing when someone achieves Parinirvana.

What if all these processes are entirely natural, relatively low key and nothing to shout about?

The hagiography diverges from reality…what is natural becomes miraculous. Which may inhibit application. The idea of a miracle is out of reach; the idea of continuous improvement and stepwise attainment is less daunting. Toning it down might increase genuine uptake of practice.,

Status pissing contests are a common human practice and are to be found in religion and science. People like to bullshit each other and pretend to know shed loads.

I have a pet theory that the hagiography of all religions exaggerates and glosses.

Karma and End of Life

In my opinion it is very unwise to discount the effects of karma both as an individual, as a group or as a nation. Karma suggests that behavioural causes have inevitable effects. Our actions create our future. There are consequences.

Of course, there is no compelling reason why you should pay heed to my opinion. I am not some big cheese new-age book-selling guru, nor have I been recommended by hosts of followers {paid or otherwise}. I am not famous and I have no introduction written by a senior religious figure, a lama with a throne. My provenance if unknown and/or dodgy.  I am a retired person living in the countryside without cult or church. Perhaps a lone eccentric in a quiet by-way of a vast internet.

In the philosophy of karma, what you sow you reap.

It is not a great step to imagine that harvest comes towards the end of life. That harvest might be of a dual kind, material financial to retire on and spiritual karmic to set up the next evolutionary step, the next life. By the time you reach the autumn of life one might speculate that one has learned good from bad. One may have acquired a modicum of wisdom and life experience. In the light of that knowledge what you do towards end of life is more important because you can no longer plead inexperience or ignorance. As knowledge increases so does karmic import, karmic impact. You know better. You may not behave consistently with this knowledge.

The time in and around your {natural} death is the harvest of karma from this life and the others which precede. One might die well or cling on to the starboard bow with all your energy, afraid of letting go of the ship of life. In order to die “well” it is perhaps wise to pay off any residual karmic debt {if possible} before passing. This is because karmic debt accrues interest. One might wish an enabling birth subsequent.

But if you are of the “phew I got away with it” mentality under no circumstances, might you feel it necessary to settle accounts. You might take your smugness to the crematorium. You may remain stubbornly convinced, entitled even. As the crem gas burners light, you may look on and still think, “I told you so, there is no life after death!”

Even if you do not believe in karma, in the philosophy of karma, your words, deeds and bile add up. Karmically, you deny karma until such time as karma makes itself irrevocably obvious to you. You can struggle but karma is “bigger” than any petty human. Sooner or later “you” learn and your dogmatic adamant insistence to the contrary is shown to be flawed and inaccurate. This can come as quite a shock!!

For example, if you had unresolved karma with me, once divested of your stubborn personality vehicle, we might meet on the cusp of the dream, in the in between of worlds after physical plane death. There you cannot pretend not to have seen me or make an excuse because you are busy. I, still living, would not be surprised to see you but sure as hell you might be. What might you say?

At one time I briefly considered working with end of life care. But when I thought about it, I might go down like a lead balloon with friends and family.

From a Buddhist perspective having a “good” death gains karmic merit, it is a stepping stone, to the other shore of liberation. Being awake and conscious at withdrawal eases the transfer of emotive unpleasantness and thereby lessens the ongoing karmic burden. Panic and fear are not helpful; resistance is ultimately futile. Because of modern medicine I have had six more years. In the old days I would have died when I broke my femur.

I have a pet theory that modern medicine has complicated the workings of karma. That makes sense because karma too must evolve. Human choices are more nuanced than they once were. The temptation to strive to have life on you own terms and to try to dictate to the universe is strong.

In my dreams I have foreseen meetings {after their death} with a number of individuals with whom I was once acquainted. To my knowledge most of them still breathe earth air. If my dreams are predictive, we shall meet again in a “place” with which I am the more familiar.

What I am hinting here is that karma does not cease on “dying” but persists into the in-between experience on going. The slate is not wiped clean. How you live your life at and towards the end matters.

As I suggested at the beginning it is unwise to discount the notion of karma.

Memories – Alzheimer’s – Still Alice

The other night we watched a film “Still Alice” the purpose of which was to get the viewers to empathise with the Columbia University professor Alice who develops early onset Alzheimer’s disease. It portrayed the impact on her and her family as she lost cognitive function and recall. There was no CGI, sex or violence in the film and it was engaging, well written and well-acted. A nice change from the glitzy, violent and insubstantial. It was a bit sentimental drawing on the American idealism of family and career. It showed how when someone devotes all life to career it can be taken away. Where value is placed can be fragile.

It is pretty easy to prematurely self-diagnose Alzheimer’s as one moves towards dotage. In our case the need for linguistic engagement outside of our proximal relationship is minimal. One could say that I am out of practice talking shite.

Modern psychology is very normative in its approach and there are a series of behavioural norms which, if there is divergence from, evokes a label of illness or syndrome. I don’t know where the set of societal norms are garnered from, what the statistical evidence is or whether the ultimate arbiter of “they” decrees what is normal. I don’t know who drew up and populated the Venn diagrams.

In the film there was mention of “memory makes us who we are”, there was thumbing of family photo albums and old holiday film footage was played in the narrative.

Human perception is never 100% objective and any recall of past events is subject to selective perception and selective memory. Humans are biased. We have selective recall. The memories, the bedrock upon which we build our re-collection of life are not entirely sound. In the film the protagonist identified as a clever university professor. That identity was removed when she started to lecture poorly. Her entire personal legend fell into question. The film suggested she suffered during this process, trying to cling on to her faculties and her legend.

A saccharin rose-tinted view of the past is perhaps the tearful key to enjoy the twilight years according to many. Looking back wistfully sustains as incapacity and incontinence sets in. Our past “glories” provide a nice warm feeling which is not a leaking catheter. The ability to live partially in the past is seen good as the quantity of future available fades.

I am certain that how I hold memories of the past differs from many because I have recapitulated my life numerous times and worked hard at erasing my personal history {not in a browser}. I’ll speculate that were a psychologist to investigate my recall of life memory they might note a difference to norm.

I am not beholden to past nor do I cling on to it. Nevertheless, it has a causal relationship in how I interact in the now. I have a decent scientific training and could, if pushed, sustain a scientific conversation or persona.

One could argue that I have forgotten who or what I once was and have morphed into an anti-social bumpkin. Look how far he has sunken! What a fall from intellectual grace! How sad, what a shame!

But that would be facile.

This addiction to creating “memories” or “Insta-stories” is counterproductive to the pursuit of liberation. The concretising enhances the urge for rebirth. The constant re-telling of “family means everything” is often a lie and something we are encouraged to provide in our PR stories for public consumption. There is a big illusion concerning “family”. To err from ideal is seen as bad even when the ideal itself is an illusory construct. We are complicit in the propagation and recounting of this illusion.

This means that although I can appear approximately normal, the underlying psyche in my case differs markedly in that a shared basis is not there. I do not think the way I am “supposed” to.

About a decade ago I had cause to re-learn university level physical chemistry. It took a while. I had big difficulty because some of the so-called proofs which I once accepted without question no longer seemed adequate to me. They seemed short-cut. Yet thousands of undergraduates receive degrees every year by correctly reproducing them and applying them mathematically to exercises generated by faculty. I have no doubt in the physical applicability of much science, because we can build rockets that work. I am not entirely convinced that the methodology is as perfect as we imagine and profess. There may be some element of kidding of self along the way.

Maybe I have lost my science ability, my science faculties.

The film touched briefly on the notion of identity, or self, and hence self-perception. Something which Alzheimer’s gradually erases, if I understand correctly. In some ways my notions of self are gone already even though I maintain some cognitive function and have near zero resident social-event memory. There is nothing which I cling to and not very much which keeps me here, incarnate, on earth.

This notion of self, seen as good, is also behind war and conflict. The gist of the film was that maintaining the sense of self and still being the same person underneath despite all the loss of function and memory was a good thing. I am still…despite…

I am not sure that it is, from the point of view of liberation. Karmically if you place a lot of stock in intellect and its application, then to have it withdrawn is a major challenge. One which could set you up well for the next life. Sometimes our worst fears manifest and that is not necessarily a bad thing. Our challenges at end of life can be the most profound and the most enabling for our onward evolution.

In the end, for all of us, our current notion of self must dissolve and pass whether quickly or otherwise.

Self is impermanent.

Getting Psyched Up for Hip Replacement

It seems that the bulk of the next year will encompass bilateral hip replacement surgery. That is with one big proviso, namely that someone is kindly willing to go ahead with the knife and the drill. I have already had pseudo-emergency hip surgery to mend a fracture in the neck and ball of my left femur. I had to wait three days morphed out of my head for the operation. There was an innate knowing that each day I waited the outcomes would be worse. To get prepped for operation in the morning and then to be told it is not going ahead is not the greatest of tidings to hear. In September 2019 I started my 55th year post-op with a titanium prothesis. I was awake during the operation which felt that someone was at my skeleton with an industrial grade civil engineering jack-hammer. Your whole skeleton resonates. I have an inkling and would prefer a general anaesthetic next time.

As can be seen from my April X-rays the situation with my left hip is complex.

There has been a bony growth {blue arrow} over the top of the implant. This will need to be chiselled off to enable the pin to be unscrewed.

We could be talking three operations. One to remove the metallic pin, one to fit the right hip and one to fit the left hip. It will be up to the surgeon to decide what to do. You can see from the X-ray images that I am bone on bone, so to speak, on both sides. My range of movement is very limited. My arthritis is classified as severe or to use a lovely turn of phrase, end stage.

In my mind it is not clear how easy or otherwise it will be to have a successful complete hip replacement on the left hand side. The right hand side seems more common or garden.

At the time of the accident, a fall from standing in the kitchen, I was not checked for any bone weakness such as osteoporosis. There was a lot going on. The age at which the major fracture occurred for a male was young given a relatively minor trauma. The GP has kindly prescribed a bone density scan just to check if there are any bone strength anomalies we need to consider. If there is weakness there are some further blood tests including testosterone and calcium levels etc. A weakened bone has implications for hip replacement.

If you search for hip replacement personal stories on Dr Google you are confronted with masses of marketing and PR from various outfits offering butchery and repair. They are nearly always upbeat and scant in detail on the downsides. There must be some horror stories out there but these are not easily found. Why not? Without being overly macabre I would like to read some to get more balance. They have been somehow redacted. I get it that in most cases the surgery is transformative. I am always a little wary of one-sided reporting. It irks and poses the question.

I have no idea as to how well I tolerate pain compared to most. My speculation is that I can tolerate and endure better than average. Thus, my arthritis has progressed this far without me whinging and moaning too much. At the moment the pain levels are boring and wearing. They do grind you down a bit just as the joints grind away. Movement can feel like a pepper mill at the end of the day or a long walk. The 3 AM pain and subsequent medication is a tad intrusive. We have a supply of mid-to-high level analgesia in the pantry {given to the wife} which I have not touched yet. The possibility of a “trainspotting” red carpet moment exists.

I do not imagine myself doing a pogo to the Sex Pistols post op. It remains to be seen to what extent movement returns and pain diminishes. If you read the glossy bigged-up articles and watch the videos my career at the Bolshoi can restart, soon enough.

I have enough upper body strength to use a Zimmer frame with ease whilst sporting my Crips gang colours. This strength is on the one hand enabling and on the other limits my need to do recovery leg exercises. A mixed blessing.

We will need to pay for a gardener to do the hard labour I once did. It looks like we will stay here for the next year. To attempt to move house in the middle of getting sliced would be lunacy.

On the one hand there could be enhanced movement and a “new life” or at least a better few years. More likely the improvement will not be step function but an obvious improvement.

I know that I can hack lying around post-op with sexy compression stockings and daily anti-clotting injections. I will lose weight because muscle mass will go. I will not eat much at the hospital. The biggest worry would be a Myeloma relapse for the wife. That would make things very tricky. Two ill and disabled people in the same house. We already have a well-used loyalty card at the local hospitals. We could write a “Michelin” guide to French health services.

I don’t really have fear, yet. I have had general aesthetics near half a dozen times. In a weird way I quite enjoy the coming to process.

Again, the district nurses are likely to be regular visitors chez nous.

Yup it looks like close on a year for two {three} operations and the recoveries therefrom.

Life will kind of be on hold…