Chapter 29 (short on wit or humour) in which I live happily ever after.....

When I started this blog it offered me the chance to explain express the things I was going through with the onset of MG.
At a time where I was struggling to see straight and unable to talk without a comedy speech impediment it was a relief to be able to communicate even if I was unsure if anyone was reading it.

I have just looked back through some of it and it struck me that it is so easy to forget how things were just a couple of years ago. It also occurs to me that it remains incomplete without a final chapter.

The thymectomy to which I refer in the pompously named 'Chapter 28' went fairly smoothly in July of 2015. It was intended as a 3 apeture keyhole operation, my thymus was  however a career record breaker, being the largest my surgeon had ever removed, weighing in at nearly 300g.
As a consequence it required a total of 7 holes and an hour and a half of effort by the surgeon.
Excited by its size he photographed it on his mobile phone, showing me and emailing a copy of the photograph to the surgeon in Canada that trained him in this proceedure.
It looked like an oversized ragworm about 200mm long and with what looked like legs along its length in a dark liver red colour, in all pretty hideous but with a bit of garlic and a squeeze of lemon who knows?
On a subsequent bed visit I asked him if I might have a copy but he declined explaining he had been reprimanded   by his boss for photographing it, I suggested that he need not let his boss know at which point he introduced me to the man standing next to him ( his boss)!

So with my chances rated at a third for no change, a third for a marginal improvement and
a third for a full recovery I waited and began to wind back the steroids as instructed.

Around October 2015 I went to meet my hero and neurologist Doctor Richard Armstrong who seemed fairly confident that the operation had worked and that I was in a complete remission.
At this point I was cautious in my own assessment because although I was symptom free it seemed to good to be true.
Last month I visited him for what should hopefully be my last appointment and I too am now convinced that I am free of MG and that it is consigned to the virtual pages of this blog.

So dear reader its a fond farewell from me until and unless I find myself afflicted with any other diseases with creative possibility.

I shall miss this blog but not the shit disease.

The End

X

Chapter 28.. Life moves on and I explore the possibilities of a 6th person narrative and a trans gender lifestyle

One year tomorrow since Chapter 27 On this basis how many more chapters before my molecules are redistributed?


I remember laughing, oh how I laughed 

Haa ha Haa..... (throws his head back to emphasise how he laughed).


at the suggestion that my dear old prednisilone steroid would cause me to gain weight.
So determined was I to prove my GP wrong that I started a diet regime that actually saw me lose about 10 kg.

That was then and this (as they say),

(who may I ask are these 'they' of whom you speak?

And if you are asking that question of our dear author, who are you?

And if it is you now addressing the questioner and you are not yourself the author then....
(that's quite enough thanks Ed).

who the fuck is Ed?

OK enough already (in the style of a yiddish shopkeeper),
cut to the chase, I am now, at 102 kg as:-

heavy boned
"it's me glands see" 
slow metabolismed
fat as fuck
as I have ever been.
I would love to blame the steroids but sadly even I wouldn't believe me.

So our hero dear reader, the neurologist Richard Armstrong, has arranged for me to have a thymectomy (spell check turned that into thymec Tony, who sounds like a mob hit man and then, when re typed suggested hysterectomy, with strange foresight (as will be revealed below). 
Alternatively perhaps the all powerful Google have developed spell check with a future text facility?
I wouldn't put it past them

The date for this operation is set for August 10th which is convenient as I shall be off school and was already resigned to a holiday free financially challenged summer.


The thymectomy offers an approximate one third chance of complete recovery, one third chance of an improvement and one third or 33.33333333333333333333% (stunned by my accuracy eh) of sweet Football Association.
The proceedure used to require a full opening of the rib cage as used in open heart surgery and the film Alien,
but is now a keyhole video assisted procedure played by children on PlayStation 4.


My surgeon, or at least the one they are lending me, suggests that I lose 10 kg by the day of my operation.
He hastily added that this wasn't to say I was fat, but somehow I doubt he was asking me to lose 10 kg in muscle or consider cutting a leg off.

So having tried and failed to start on a 5:2 diet that worked so well last time I am now considering Slimmers World.
It is hard to square this with my carefully cultivated Sensei image and so perhaps I shall borrow one of my mums dresses, then purchase a wig, reinventing myself as a housewife of a certain age.

This would offer the benefit of allowing me to attend the classes, whilst making some new friends outside of my usual social circle.
Grayson Perry is one of my heroes so who knows where this might lead me,
he is a transvestite artist why not I hear you shout a transvestite Sensei?

Sensei Sensei(tive ).... formerly known as Mark has a certain ring to it.

Elsewhere in my life I continue the task of steering Pinewood Judo Club. 
This is a huge challenge as it involves me in coaching or attending the club most weekday evenings as well as travelling most weekends to coach at competitions. 
My wife and daughter are paying a high price for this commitment and faced with some of the self interested parents (who turn their children into projects) along with the authority junkies on and off the mat and the credit hoovers that feature in most human enterprise there are times when this all feels too much.

Poor dear me I'm dabbing tears from my cheek with my scented lace handkerchief as type this.

and when one of the Pinewood judoka splatter their opponent and I leap from my coach's chair?
Well of course that's something money can't buy.

Poverty is another thing money can't buy.

Another challenge of the club,  as a registered charity is that it hoovers up both my time and energy, to such a degree that my paid teaching business is confined to the spaces that I can squeeze in around it.
This means that I'm unable to expand my business as I had planned BP (before Pinewood) and this is another sacrifice my family are forced to make with me.

So as I grapple with these problems my delicate hand trembles and placing my bone china cup into it's saucer i sigh softly and fall into a troubled sleep..


GET A FUCKING GRIP FRICKER!

Chapter 27 More rant than blog.....

This Chapter (27) bijou bloggete here will not even make a pretence of being about MG.

So what's it all about Mark.... I don't hear you ask.

Sit down get comfy and I will tell you......

Today I experienced the highs and lows that come with a coaching position.
I watched a couple of young children conquer their self doubts and get their techniques working well.
This was immensely satisfying as I realised that some of the technical work I have been doing with them is finally paying off .
Just in case I was left with the idea that the problems are over, I then watched a couple of much more experienced children sleepwalk their way out of the medals.

Case 1
With a Yuko advantage I watched an experienced fighter collect 3 penalties in the last minute of his bronze medal contest. He has a habit of dropping to his knees and attempting low Seoinage without any preparation (flopping as it's known in the trade) With a comfortable lead all he was required to do was play safe and finish the fight.
The last of these penalties was for a completely unnecessary flop as the bell rang at the end of the contest.
With 3 penalties his comfortable lead was squandered .
As he realised he had lost, it got worse and he spat his dummy, turning his back and was about to storm from the mat.
This is the 2nd time he has done this in a week and he is close to becoming an embarrassment and a liability to the club.
He turned for what he knew would be unqualified support to his parents as he burst into tears. One of  them later explained that he didn't consider it fair that they "took it off him"
I explained in a direct way that with 3 mistakes 2 for flopping and 1 for walking out of the contest area.
far from having it taken from here, he had in fact given it back himself.

Case 2
Another of my fighters having worked his way into the golden score then stopped attacking.
No amount of hints from me "open up now" time to get moving" made any difference as he appeared to go on strike . When the inevitable passivity penalty was given ( losing him the fight and medal) his parent screamed at the referee "what was that"? Or something similar. I realised that with only a rudimentry understanding of what they are watching these parents are consolidating their children's weaknesses by instinctively reaching for an excuse whenever they make they mistakes.

The inevitable consequence of this, is that these judoka, do not consider that they need to address any problems .

The inevitable logic of this position is that the child is already as good as he or she will ever be.......


(which now I consider it is probably true) !


Another day tomorrow for more of the same!

Chapter 26 In which the bottom falls out of my world and the world falls out of my bottom..

Hello my Dear Old Blog,

Its been awhile eh?

Since Chapter 25 so much has happened,

In January of this year my dear friend and lifetime judo coach Don Werner died.
I had time to prepare myself for this as he was diagnosed with a terminal illness some months before, knowing in advance however did not diminish the whirl of emotion when the time arrived.
He truly was a giant of a man and the force of his personality remains an almost physical force within the club he built.
His final decline was a bitter sweet experience for me, I supported him during the final months of his life
with his coaching. He stubbornly refused to concede an inch to his illness, only leaving the mat when he was forced into hospital for treatment.
This period gave me an opportunity to watch him more closely than I ever had whilst being coached by him and also deepened my friendship with him.
He was a true maverick to the very end, challenging the status quo, questioning anything and happy to share his opinions (which he argued with force if anyone disagreed).

On occasions I found myself defending an opposing view and after delivering both barrels at me, I was often left with his wry smile and the feeling that he enjoyed the verbal combat almost as much as he enjoyed judo
.
If anything I think my tendency to speak up when I disagreed strengthened our relationship as it gave more weight to my agreement which was probably 95% of the time.
The greatest honour he ever paid me was on the occasions that he sought my opinion.

At various times whilst he was stuck in hospital I found myself a conduit for messages, in both directions.
These underlined for me what a huge impact he had on so many lives,  it became apparent that whilst there were many recurring themes, each of us had our own unique version of him, almost tailored to our specific needs, and sometimes at odds with other peoples versions of him.

The truth I suppose, is that each of us look through our own lens at the world and these lenses are the result
of our own life experience.
It is strange to consider that we must on this basis, accept that there are other versions of ourselves, being held simultaneously by the people we know.... one ill chosen joke, a slight, or a forgotten kindness might see us cast in a role we had never intended, or been aware of.

Towards the end Don asked me if I would continue his work at the club, this is the biggest challenge of my life so far and if I considered the implications of getting it wrong I doubt I would sleep at night.
I was the first substantial disappointment in his coaching career when I quit at 20 without having the courage to even try and explain why. Ten long years later I re-started  judo and have finally got the chance to try and repay this debt to him. I am grateful that I had the opportunity to make this promise to him at the end of his life.

No thoughts of my David Moyse to his Alex Ferguson can be allowed to cross my mind.

Well meaning but misguided people have suggested that I have a difficult task in matching his accomplishments, this demonstrates a lack of understanding on their part.
A short appreciation of what he achieved in his long career makes it clear that I would be a vainglorious fool to imagine I could even get close.
I would have to have to live to 150 to stand half a chance!

What I am doing is what he told me to do..... my best.

In Chapter 25 I was cautiously hoping that my MG was over, I stopped my steroids and delayed the start of the immune suppressant drug that I had been prescribed as the potential side effects looked like a rival to the disease itself. I was as objective as possible as I waited and watched for returning symptoms. I was anxious to avoid undoing all of the good work achieved by 'Sir' Richard of Armstrong my hero and neurologist.
Four months or so later and there it was the familiar drooping eyelid... just a trace but definitely there.

Damm.... so a short blast of steroids and then on with the new stuff (Azathioprine) a ramped dose that increased daily until reaching 250mg. Another inconvenience with this regime is that I have to have regular blood tests and am susceptible to infection like the whitlow on my left thumb that started to look like some kind of Ebola virus. As my supply of Aza (to its friends) had run out I stopped taking it again and within a couple of weeks the infection subsided perhaps as a consequence of my immune system climbing back off of it's arse.

God this blog is boring me!

So lets get to a funny bit eh?

Did I tell you about the time that  having got a new pack of Aza  I restarted at my full daily dose?
A couple of hours later feeling nauseous I had to visit a toilet in a local school.
I had just delivered a judo lesson there,
you didn't think I left my house in order to use a local school toilet?

You are sick sooooo sick!

as WAS I!

a horizontal column of projectile vomit fired from me with echoes of 'The Exorcist'.
This was  followed in short succession by what looked for all the world like a jug of brown windsor soup that fired from my arse at a rate that I'm sure sucked my eyes backwards.
I was in need of a swivel chair in front of the WC as I span in a frenzy of expelling bodily fluids.
This was a weight loss plan to be respected and I assumed that it was some chicken that I had eaten at lunchtime.
Fearing that my wife or daughter might share the same fate I rang them from the club warning them that the chicken should be avoided at all costs.
My reluctance to take the Aza meant that I then lapsed for another couple of weeks before taking..... you guessed it a full daily dose.
This time the nausea struck at an even less opportune moment...
I was meeting with Don's daughter, son  and grand daughter in order to spread his ashes in woodland behind the club.
To my credit (Don would have been proud) I managed this with great self control, but as we returned to the cafe Kerry examined the menu with her daughter, the final straw proved to be a discussion around the pineapple beef burger.
This was more than I could handle and as my mouth filled with saliva I made an excuse and ran for the door.

Shortly after this I was scattering the woods and spattering my judo trousers with my recently ingested tomato soup.

Now running short of time I left to drive to a judo lesson and was forced to stop on the way for yet more vomiting, this time at the roadside.
By this point I was  incredulous at how much I seemed able to expel and began to wonder whether my intestines might soon be on their way out of my mouth.
Arriving like a scarecrow at the school and wearing spare blue judo trousers with my white jacket I managed about 20 minutes before some kind of deep volcanic gurgle announced part 2.
Leaving the poor bemused children with a muttered excuse I made my way to the very same toilet, positioned in the reception (what insane space planner thought that was a good idea)?
As I recreated the toilet scene from 'Dumb and Dumber' I was praying (and i'm an Atheist) that there would be no one waiting to use the toilet...

Which of course there was, God help them......

(and I'm an Atheist)!

So as I sit here fully hydrated and illuminated by the light of my puter screen, I'm still avoiding the cure and praying

(and I'm an Atheist)

that the disease leaves me alone for a while at least.

Lets not leave it so long next time Blog it was soooooo nice to catch up.
      

Chapter 25

Hello again old friend,
It's been a while eh?
I have been reluctant to post anything over the last few weeks particularly as this blog,
in name at least, is supposed to centre on my MG and I have been holding my breath (not literally of course, that would be silly).

Back in October my neurologist, Richard, explained that my progress on the steroid treatment had been good and that I was ready to enter the next phase of my treatment,
this was to involve a steady decrease of my steroid dose, whilst I began taking a new immunosuppressant drug (also used in chemotherapy).

Richard is, as I have already explained a warm and hugely capable person but,
like most capable people he is under huge pressure of work.
Consequently the prescription for this new drug took some weeks to get to me.
Once I had the prescription and the new drug,  I looked with interest at the possible side effects (of which he had warned me).
The possibility of serious side effects, coupled with the frequency of necessary blood tests, gave me pause for thought.
I had begun to suspect that the physical effects that I was experiencing maybe a result of the steroids I was taking rather than the disease and that I might be in a remission.
I then decided on a course of action that may seem foolhardy (if you read this please forgive me Richard).

It struck me that if this disease was for life, I could afford to reduce the steroid dose and see what effect it had, I began to do this over a period of a couple of weeks until about 4 weeks ago when I stopped entirely

and waited......

and waited......

and waited.....

and (thats enough we get the picture thanks Ed.)

Sofa so good (or is that Land of Leather)

Without any trace of a symptom, I regularly forget that I had (have) this disease,
and occasionally, like now, I perform a kind of mental stock take....

Droopy eyelid? No
Weakness in my neck or shoulders? No
Any difficulty in breathing/swallowing? No

I am very strict with this evaluation as it would be easy to overlook something subconsciously
in the hope that I am in remission.
I am aware that there will presumably be some residual steroid in my body and that this may still working, however given that I reduced the dose to zero before stopping I cannot imagine that this could be the case for much longer.

One thing that I have noticed is the steroid mania that gave rise to many machine gun style monologues
has left me.....

I actually miss it but doubt if anyone else does!
The new direct way of approaching issues that this gave me however, is still there and this is a
a relief because I feared this maybe only a temporary chemical advantage.

If I wake up tomorrow with the tell tale droopy eyelid I suppose I have at least enjoyed a brief holiday from it and I shall have to resume where I left off, in the knowledge that if it is a lifetime disease I have only lost a couple of months. The conversation with Richard maybe embarrassing though!

" You did WHAT!"

I thought it might be a good idea to stop the carefully considered treatment programme that you had
me on.  

" So you decided this based on WHAT EXACTLY"? 

It just felt like I might be better.

Mmmmm put like that......

Faced with the possibility that I am one of the lucky people that go into remission
I shall soon have no excuse left to avoid serious training.
When I consider how fit I was back in June when this hit the fan it really does feel like a mountain
to climb from where I am now, but it will be nice to make a start charting my route to base camp.  


What will I discuss on here without MG.......

how about this nasty rash on my scrotum?

HAPPY CHRISTMAS!

Chapter 24 I'm not bein funny yeah?

So after 45 Years of practising judo and 5 years teaching it full time I find myself just beginning to understand how little I know (cue round of applause from serried ranks of old ladies Monty Python style, he's soooo self effacing soooo humble modest and attractive with it).

A humble 'don't mind lil ol me' start to what I fear maybe a steroid rage in virtual print.
45 Years...... think about that.....
Think about the cumulative experience much of it unconscious, but more recently the conscious effort to understand, to analyse and disseminate this knowledge in a way that can help others to short cut the time it took me to arrive where I am.

Last night I was approached by the parent of a very young child who has just (3 weeks) started judo.

"Can I have a quick word"?
he asked........  

"Have a slow one".
I quipped.....

"My son was doing something he shouldn't have been doing earlier and neither you or Don noticed, I'm not sure what I should have done as Don didn't seem happy for me to tell my son direct about what he was doing wrong".............

YOU ARE FUCKING JOKING I thought...

He said, he never quite made me understand what this was, gripping the head was as far as we got.

"Have a look at the Walls" I said  (bedecked with World Championship, International and National success memorabilia),
"he hasn't done a bad job so far".

"Without your son or your help" I didnt add.

"Have you done judo"?

I asked the question knowing the answer (tried and failed, tried and gave up, he must succeed where I failed etc).

"Yeah a little bit when I was younger".
At this point I suggested he re start judo by trying a Wednesday night session.
I explained that this might give some insight into what his son is facing.
He changed the subject quickly, explaining that he 'ran through the hold downs' with his son at home.
He may have read the expression in my eyes as he hastily added that the size difference between him, a grown adult and his 5 year old son, brought its own practical problems to these drills.

My expression had more to do with the idea that an adult could imagine that 3 weeks watching gave him the unique insight into this sport that could not only replace over a 100 years of cumulative experience at his son's disposal that night, but more importantly, the confidence to ask permission to coach his child.

Coaching is difficult enough without the constant rear guard action necessary to hold back the tide of dad's that hover out of their chairs, whispering commands to their poor children, who constantly have half their attention on their fathers, (and yes in my experience, it IS fathers not mothers, although there are exceptions to this rule).

The 'advice' proffered is usually the last thing they heard (and half understood) the coach say.
This is then chanted as a mantra, irrespective of the situation, or it's demands...

"turn him over!" 
bet he didn't think of that don't forget to tell him to breathe whilst your at it.

"arm roll!"
Usually suggested when their child is laying prone, face down flat on the mat, with the tips of their opponents fingers grazing their armpit.

"drive it" 
Always a favourite, implying as it does, a manly determination, and yet vague enough for almost any scenario.

You have no idea how difficult this stuff is for an adult, let alone a 5 year old who is still making the neuromuscular connections and gaining the motor skills an adult (even a coach) can take for granted.

The poor children stuck between this rock and a hard place are desperate to satisfy their fathers and gain their respect.
This is the respect and love that they are owed without condition from a parent.

They are their fathers....so much more than their coaches could ever be.
If they got their job right and left us to do ours, or perhaps spend 40 years doing it, then start a club, then train a few world champions  and Olympians and then perhaps begin to understand how much they still have to learn.


Second thoughts shut up and sit down I'm doing
(and it is costing me a fortune in lost earnings)!


Footnote: I address the issue of the fools and NOT the well informed, well intentioned and knowledgeable parents who spend countless hours at the side of the judo mat, sharing their child's dreams and sacrificing their money and social lives in the process.

With two Chapter 21s is this 22 or 23? Do you care?

This ol disease has transformed my life.
A bold statement and a promising start to Chapter 23/ 24.

My wife is a psycho

(logical) counsellor and with English as her second language, she has been writing essays regularly, as part of her coursework.
I have helped to check and edit these essays and as a consequence of this I have been grasping at some of the basic principals of this study.
In effect I have been receiving my own general education in psychology.
It is a fascinating area and I find myself applying it's principals more often, not only to other people and their interactions and motivations but also to myself.

The new directness that I mentioned previously on this blog may be a partial consequence of the steroids that I have been taking, as they came with warning of possible side effects including feelings of mania or depression.

Whilst I do not consider myself depressed I can say, with some certainty that I am occasionally manic and.
many poor parents can bear testament to this.
I sometimes feel like I am hit with an understanding of the 'truth' beneath the complex layers that people use to mask their emotional responses or intentions.
Once I have hit this understanding it feels as though I have peeled away the layers of an onion and it is both invigorating and exciting.....
Unfortunately at this point I usually feel it necessary to explain it to whoever will listen (and they don't get a choice).
My monologues are delivered at 100mph and allow no interruption.....

Yes Mark that's interesting.....
Read...... please I need to go

Oh really?
Read.... REALLY, I really need to go!

Example:
I attended a children's judo competition recently, not as a coach but as a spectator.
This gave me a great opportunity to step back from the trees and see the wood, an objective view of this sport that I love.
It was a truly unedifying spectacle,
I watched as Coaches screamed instructions at their young charges, desperately trying to micro manage their performances like deranged puppeteers.
If these unfortunate children made a mistake they would be subjected to a loud and public humiliation
in full angry dad style.
This bullying was delivered from the person they were relying on to provide a calm and thoughtful influence at this stressful time.
This of course is person who should be able to take a strategic view of their progress and then adjust their training regime to address any problems that might become have become apparent.
The coach should have been working to equip their fighter to find in themselves what they need to handle the demands faced in a contest, but this kind of independence is an overlooked and undervalued asset.

How could someone in this position abuse the trust they had fostered I thought......

(those dots indicate me thinking, suppose a question mark might have done a better job, here you go have this one and don't lose it ?).

It suddenly hit me the whole picture!
The truth of this was that the coaches saw their children as extensions of themselves........

(not thinking now just a dramatic pause)

Vehicles for their own ego........

(tell us Mark, Oh Guru, oh wise one, don't leave us hanging)

Using these convenient little vehicles they could demonstrate to the world, and themselves,  their inherent superiority,

Until of course they lose.


It then becomes necessary for the puppet master to explain loudly to his audience that it was the puppet that was faulty.
So these screaming attacks, whilst on the surface seem to be directed at the child,
in fact are aimed, via the child, towards the watching adults, (both spectators and coaches).

"IT WASN'T ME!!!"

Once aware of the dynamics of this situation...  I considered that the other reason that coaches overlook the importance of helping their competitor reach a state of capable independence is that it
makes it more difficult for them to hoover up the credit.
This credit is really the motivating driver for their coaching, possibly they have an insecurity that needs to be bolstered by the credit?
Maybe they were made to feel inadequate as children subjected by parents or coaches themselves to this kind of conditional love?
My instinct is that suits their subconscious purpose to engender and propagate a mutual need.

Coaches often joke that if their competitor wins it was because they, the coach got it right,
conversely, when they lose it is the fault of the child........

Closer to the truth than they probably realise.

On the other hand I might just be mad.