Inside a Boomer and Assumptions

A while back when we were trying to sell our house the young estate agent commented that we had loads of DVDs just like his parents. They were umbilically connected to their devices. Their default was to use a search engine instead of think. As an old git I can comment that they had no inkling as to what may or may not be inside a boomer, what that essence may be.

Around 40 years ago at Durham University, during a conference on high resolution spectroscopy of van der Waals molecules, I gave my first oral presentation concerning the paper-worthy results from my first year experiments. It was a tad precocious to speak amongst all those professors dressed in my black ripped 501s with buckled suede Doctor Martens, a short spikey flat top haircut and a Smiths t-shirt.

My moderate hangover had to be negotiated. I made no mistakes and the talk went well. Later that evening I was “chatted up” by various profs perhaps looking to recruit in due course. My punk “fuck you” attitude was reeled in.

To use the time honoured phrase, the youth of today have no idea what it was like back then. How protest and rebellion were a rite of passage. People do not expect residual punk attitude. I was soon to become an evangelical vegan at that time. Meat is murder!

Last night we watched a short documentary on the Smiths who provided a sound track to various aspects of life, including my mid-nineties depression. “Heaven knows I am miserable now…”

People make shed loads of assumptions; they always have and they always will. There is an expression that “assumptions are the mother of all cock-ups”. {and clusterfucks} I have extended the vernacular so that it is up to date.

Even when people know that making assumptions is foolhardy, it seems that they simply cannot resist making them and assuming their accuracy and applicability. Checking assumptions is for many an anathema. People will assume how others might behave, what they will do.

My mother when asked to come to my second wedding said that it was too far away and difficult for her to come. My assumption was that her assumption was that she would be cajoled into coming.  After sufficient cajoling she would yield as if she was doing us the greatest favour in the entire world. Instead, I said OK fine and left it at that. She may have been waiting for me to change my mind and start cajoling. I did not. The wedding went ahead without us having to cater to her insatiable drama queen tendencies.

Sometimes assumptions can backfire “biggly” to quote Herr Trump.

One of the assumptions in our modern day is that everyone is contactable, that they have contact details and because of the fear of missing out, they will never be incommunicado. People are eternally at “beck and call”. When I say that I do not use ‘phones people do not believe me. They think I mean “much” but I don’t. My mobile has had two calls in six months both of them test calls by the wife. Someone once said to me, that if I had any questions, I could call them. He may have imagined that I might. I “filed” his card without even looking at it…In my mind we would never speak again.

I suspect that in a cross generational sense we do not understand nor appreciate the difference in essence. Even within a generation a beige or a plastic may not get a goth, a punk or an indie. As part rasta in orientation I may not subscribe to the 80s “Wolf of Wall Street”. When I sat in the board room at Fleming Family and Partners in Dover Street Mayfair to discuss million pound funding deals none of the suits knew where I was coming from, nor did they care overmuch.

It is funny your true colours are on the inside and not the outside.

Reasons to be Cheerful – Iron Two and Three

We heard on the news today that Netanyahu had a colonoscopy this morning. This means that he would have been on an industrial grade laxative protocol last night and this morning. He will have a sore sphincter and maybe, just maybe, he is now less full of shit. He has quite a few comorbidities. He is not renown for joviality, good will or a good sense of humour so the indignity of shitting his entire arse off may not have appealed to him. Laid out on a table with a metre long endoscope up your arse it is hard to be tough, macho and aggressive spouting bellicose propaganda.

Did you know that a single article in the Lancet can cost you forty quid!!

It turns out there is specialist research interest in excess bodily Iron in Rennes, particularly for rare Fe related genetic diseases. We just took the car to the garage and there was an advertising card “Jardin du Fer” so we are back roaming the streets and chanting “any old Iron” like pikeys in a white flatbed truck.

One of the guys from Rennes is a co-author:

One of the problems and benefits of having been a researcher in a previous incarnation is the ability to scan-read to spot gaps in knowledge and then zoom in, on the off chance there may be a research proposal lurking. The primer paper suggests the following diagnosis flow chart. I am on the far right pathway. All genetic testing is expensive.

On the basis of this I am possibly due an Iron MRI. Apparently, the presence of Fe changes the T2 nuclear relaxation time and by using various pulse echo sequences one can measure Fe content in the liver. One can also image Fe content relative to the spleen. The latter is more widely used.

The Fe build up could be genetic, alcohol related or caused by primary or metastatic cancers. The gastroenterologist said they stopped following liver for metastatic disease five years after colon cancer. This being the most likely hang out for colon metastatic disease.

The corporeal symptom of hemochromatosis are given below.

Hepatomegaly (Enlarged Liver) An enlarged liver is a symptom of underlying disease. It means that your liver is larger than normal. This may happen in response to an infection, advanced liver disease or cancer. Healthcare providers treat an enlarged liver by treating what’s causing it.

I have joint pain and have just added Osteoporosis to the fun list.

The default cause will be ethanolic, followed my smoking with my being a lard-arse a close third.

Maybe I am not special…maybe it really is that simple…

My research instincts say there may be something we are missing and have yet to find out about.

Reasons to be cheerful… Iron two and three.

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…

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…

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.

A Bit of a Nodal Point…

It has been an observable in my life that when life trajectory is approaching a nodal point for change, where different paths might offer, that things tend to stack up like London buses running behind schedule. Events converge, apparent available time runs out and a number of crises manifest. Things start to get hectic and it is difficult to keep clarity.

At the moment we have the selling up house and buying a smaller one choice. That might be in France or UK. In any case a move. I could do science “A” level tutoring in the UK for a few extra quid a month.

Also, there is an increasingly pressing need for me to get replacement hip surgery, which adds to the mix. Unfortunately, I could not find contact details for a traditional Fairy Godmother on the internet. Hence, the joints are only going to get worse and the pain is unlikely to diminish.

We have the Myeloma sword of Damocles hanging over as per usual.

The feasibility of a nanna-flat in the UK looks OK. There are less bungalow type houses here. The cost of living in the UK is a lot higher. We are in the administrative system here and could qualify for a 10 year right to live card next year.

I am not seeing anything new that I want to do in our garden of two acres, so the time to move is now or around now. That is also the feeling. There are a few before sale internal DIY tasks which I/we can hack. All of this is very normal and mundane.

I know from what I am picking up subjectively that there is a small finite possibility that events could transpire which would markedly change the trajectories. They are related to my Tibetan Buddhist dreams. They hint at a trajectory far away from nanna-flats, Zimmer frames and secateurs.

That febrile trajectory is not close to taking shape, though inquiries may have been made today. It is a lot quicker to ask me direct than to speculate.

A simple small win on the lottery would enable. It would buy room to manoeuvre on the house move front. It would not have to be much…

I have had some more titanium put in today. I have an implant fitted in my jaw into which a false tooth will be screwed at a later date. So, yippee, antibiotics for a week.

Stuff continues to stack up…