Crisortunity - A beautiful world with endless possibilities.

[Pyrite]

hi Ms Vanilla,

I was once so VERY hung about it - that I would've ignored, but not so much anymore. Actually, a huge portion of my "development" issues have been related to this, and only now have they really been addressed. More so psychologically than physiologically have they "hindered" my development. But - the jury is still wavering about the physiological impacts on hormone, brain chemistry issues that MIGHT be related.

When I was 9 I had a brain tumour on the brain stem. Surgically removed 10% of it, killed the rest via 6 weeks of daily radio-therapy. Tumour gone completely. Aftermath of radiation was to kill the right side of my cerebellum and cranial nerves, including aural nerve on right side.

Co-ordination on my right side is "affected" now because at 42, left side can no longer compensate due to natural degeneration. Fine motor skills, automatic correction, tracing, balance most notably affected. I am right handed and writing is very challenging. I hold on to hand rails perpetually and so on for fear of falling, but then again I am still going skiing with Ds in a few weeks.

Facial nerves are shot on right side. Not completely, but enough for me especially to notice and be self conscious of. The other thing is that it isn't going to get better with time!

I have had problems with my right eye for years, always getting infected, red nearly every day. Ocular-plastic surgeon put a gold weight in my eyelid to help close my right eye and aid effective blinking. He noticed that my upper cheek/mouth muscle was still activated when I shut my eyes tightly so referred me to plastic surgeon.

He pulled a never out of my leg, wired it to my left side upper cheek/mouth nerve which activates the left muscle. The axon has to grow across the nerve graft (~12 months), then he opens me up again, plugs the new nerve into the muscle and voila - Py2.1.2

[Vanilla]

Py

Thank you for explaining, anything that sets a child apart is going to cause issues. Nine is a very sensitive time too when interacting with peer groups. Just had to go check which nerve was the aural nerve. I don't quite get the natural degeneration on the left side though, so would like to know more about that.


How long were you in hospital for at 9? Did you lose school time?

The surgery is very interesting to read about and the surgeon sounds very skilled. Will this cause problems in your leg?

I must say going skiing seems very brave and thrilling too.

I know when I lost my eyelashes how sore my eyes were so I can imagine the problem with the eyelid.

You have the bravery award for this op, the last one was to Maybell and Jellyb had some ops too.

Amazing

V

[Pyrite]

hi V,

The natural degeneration is just age. Old people get the shakes etc - basically because the cerebellum auto-corrects, and it is fading in later years. In my case I can drink a cup of hot tea with my left hand no problem, but I wouldn't choose to try it with my right lest I scald myself. In most situations it isn't a problem, but for example I can't walk with a tea in my right hand - there is just too much auto correcting going on. In my left hand I don't even have to look at the tea to keep the cup level. It is fascinating to realise how much of our movement is automatically corrected. I have the contrast to experience this 24/7.

At 9 - I was "lucky"!! I went in the week before Xmas. i was in hospital for 4 weeks and then out for 3 months due to radio-therapy. Xmas here is over summer break so I only missed a few months of school.

Long-term there is only a patch on the top of my foot that will forever be "numb". ATM the dangling nerve end is causing a few phantom pains in my whole foot. But this will settle and already has a little.

I used to ski when I was a teenager. I have been a few times since. I can do it, I am just clumsy and YES it can definitely be scary at times!!

Actually I have long been aware of "most" of the issues psychologically that stem back to when I was 9. Most of these were more so in a behavioural sense. It hasn't been until now that I have been aware of how it screwed up my core beliefs, R's etc.

I'll get to you about this in more detail if it is of any interest to you. Oh and yeah - the 100 things - I have never posted any list. I sorta got the picture and I am still chalking them up mentally as I go. Thanks for the tip, it helps me to like myself better which is arguably the root of all my problems. I have commented to my IC that I feel/know/read that I need to learn how to love myself but honestly, I still dont even know what that means - let alone can I achieve it.

-Py

[Pyrite]

actually V - it may be of interest to you because it is the motivator of my "compulsive" behaviour. Maybe a compulsive personality has to pre-exist, but without a doubt the path I went down was motivated by the 9 year old kid. And some of the later, dramatic things that happened were also a part.

[Vanilla]

Py,

Yes it is of very great interest. I did a double degree in physiology and psychology and one of the fascinating short course I did was on brain injury. The compensation mechanisms are very interesting indeed, especially the new macrophage studies and epigenetic role in recovery.

And l would love to explore the core belief angle.

I set the 100 things challenged as originally you came across as not liking anything about Py at all! I nearly made it 1,000. Usually 10 would do it, but Py, there was so much dislike of Py. This is many steps down from an absence of love to a real dislike. I figured finding some good stuff would help you reverse your thinking, and it seems to. I am glad you are building your list. Add capable of authenticity in words and action to the list along with permits others insight and shows vulnerability.

I have never seen Py in any negative way.

Today I spent some time with Z discussing her reliance on self esteem as a measure for her self worth and I recommend self compassion instead. I recommend the same for you but for an entirely different reason. As a dad and a man, (a wonderful brave loving man btw.) who has built his life around his children then self belief and compassion are vital as a role model. Kirsten Neff has some tests you can take and there are three core activities in mindfulness that will assist you too.

She has activities, I know you like working through doing, although in this case it may just be those hypercritical super ego voices that voice to your consciousness (ego) that stops you. It could be that is the direction of travel. I need to muse. On it, though there is no reason why it can't be a double pincer movement.

Perhaps this is something we can explore, I can sense you know that you can love and be loved, so where is the love of Py for Py? It's there buried under all that pain. It is the diamond awaiting to be found.

V

[Pyrite]

Thank-you so much V. I really do struggle with this. I honestly believe that I have been repressing/compensating for it for so long that it is fully a part of me. This is why even though I want my family back, I do consider this as a gift. Without this bottoming out I doubt very much I would have had the impetus to do much more than modify my "behaviour" in the M to accommodate a happy M. Actually, that should italicized - a "happy M" indeed. Happy "situations" have never really meant a happy Py. I feel really stupid - but this hasn't even been a consideration, I haven't even known what it means - I still don't really. This is also why I have only even got around to "fixing" my medical problems now. They have always been last on the list, if they even made it onto the list!

Believe it or not I am actually quite busy, so it COULD be a day or so. I also had to give JulieH a raincheck. She has asked me some really tough questions and I need at least that much time.

-Py

[Vanilla]

Py

As and when, we have a little time and space to think.

I am glad that you are addressing your need.


V

[Pyrite]

here goes V - you asked for it

The time between the chance diagnosis and surgery was about 3 weeks. I had unrelated sinus/hayever issues. An Ear, Nose and Throat specialist was doing an examination and used a tuning fork to gauge my hearing. Moving the fork from side to side he noticed my eyes would flicker (nastagmas). To be safe he referred me to a neurologist and so on. I only mention this because he was a switched on ENT. He was actually the 2nd opinion. The 1st guy missed it completely. Actually if it hadn’t been for him, I’d likely be dead.

Anyway, up until the week before Christmas, I was an ordinary kid with the sniffles. I had no concept of the magnitude of what was happening. The first few days after I was high on morphine, pethidine etc. I just remember having a really heavy head, coming around slightly, and then being drugged up again. I distinctly remember being “high” – which later became very significant.

Then I developed meningitis. The meds had to be altered, something to do with morphine not being a good combination. All I remember consistently really is pain. I had to have fluid extracted directly from my spine an had to endure a few “lumber punctures” which were agony. I remember some really nice nurses. My favourite was an Indian guy called Marni. Funny how I distinctly remember as a kid not even recognizing he was Indian. Only in memory.

Towards the end I talked more with other kids there. Some of them died while I was there. Some a bit later. So I was one of the lucky ones. My mum was my saviour. My dad was supportive, but really he turned to work and avoidance. The radio-therapy was horrible. 6 weeks is a long time at 9, and an even longer time to be constantly nauseated etc. Every morning, Mum would drive me an hour in to the hospital, wait a few hours. Especially now that I have children I can imagine how heartbreaking it would’ve been for her.

3 months later I returned to school with thin hair on top and no hair on the back of my head, and a six inch scar. I was a bright little kid. I had always been at the top of my class academically. I wasn’t a nerdy kid. I just happened to be smart. Inherited from my father. Thankfully (maybe!) I inherited the emotional side, love and compassion from my mother. My mother also raised me. My father was a notably absent workaholic.

Kids are cruel. What more can I say. I was an outcast. I was constantly teased. The kids interpreted my brain tumour as brain damage and called me retard, spaz etc. I also had a large section of my skull missing so had to avoid contact sports etc. It grew back which is good. As did my hair.

Another distinct memory of those days was that it was the girls who looked out for me. There were a couple of older girls who took me under their wing and protected me. Even some of the adults treated me “oddly”.

OK – now the Py-[censored]. I desperately wanted acceptance. I worked out that smart kids weren’t. Especially as I got older. Especially those with a brain op weren’t. Clowns were popular though. So I became the clown. Being who I was, I wasn’t vandalistic or cruel. I was …facetious maybe. Teachers dreaded me.
When I moved on to high school I really blossomed. A third of the kids at most even knew my history. I had a “conduct card” for 4 years running that I had to carry to every class, receive a comment and signature from every teacher, and then get signed every night by parents, then hand it in the next morning.

I was a legend at high school. For example, one prank I pulled was: the school had a bunch of bricks delivered. Friday night me and some mates I convinced snuck up to the school and use those bricks to build a wall across the entrance to one building. By Monday the wall had set. I bought the cement BTW. I never stole. It would’ve cost them to take down the wall, but hey…. I was 15. Ahhhhh the stories I could tell ☺. Anyway, I had escaped wanting acceptance, I was …..popular, sort of.

I started smoking pot when I was 15. I started drinking when I was 11. Well that was the 1st time and was an extraordinary circumstances. I didn’t frink again until I was 14. Smoking pot I immediately recalled being high in the hospital. By the time I was 17 I was smoking pot twice a week, drinking the same. And this just added to my “popularity”. Now, I was compulsive even then, so I think this lifestyle worked for me on all levels.

By the time I was 19 I was smoking every day. By the time I was 20 I was stoned literally 22/24 hours per day. If I woke up to go to the toilet in the middle of the night, and I wasn’t stoned - I would have few cones before I went back to bed. And I was still passing at Uni!

By the time I was 19/20 I had all the wrong friends. BUT I was the ringleader. I was the kid all the other parents dreaded. I moved out when I was 19 so my parents had no idea. I started taking acid, mushrooms, cactus and ecstasy. At 20/21 I caught that GF I have mentioned before in bed with another dude, went home to mum and divulged everything.

Oh BTW, my parents Ded when I was 18/19. And the suspected OW was the woman I caught my dad with when I was 16. Just another stress.

Anyway, I moved out three weeks later into the craziest house I have ever lived in. In my 3 weeks at home I hosted a party, met a girl – the 6.5 year R, she was straight (drug wise). I started a new degree in Psychology. My intentions to turn over a new leaf lasted a few weeks. I sat next to a recovering junkie, ex-prostitute lesbian. We degenerated and by our 3rd lecture together we were at the pub. The end.

From 21/22 I took a bucket of acid and everything else. My childhood (best) friend was deaf and I signed fluently. I was happy to live on welfare, buy and (passively) sell, and volunteer at the deaf school in a class of autistic kids who were also deaf. The best job of my life!

I still needed money, worked as a kitchenhand, started an apprenticeship as a chef. By the time I was 24 there wasn’t a drug that I hadn’t taken. Although acid was still my drug of choice. I was Uber-popular. I had interstate friends of friends coming to me to trip. I was so in control, of being out-of-control, that I could run a fine-dining restaurant on a busy night, tripping, and pause to entertain myself with frying detergent bubbles.

And then after several hundred doses of LSD, and everything else, my GF gave me the ultimatum – shape up or ship out. So I moved home with my mum. Slowed down to a virtual stop. Quantifiably maybe 2% of what I had been taking. At 26 I went backpacking for a year, no work, just travel. At one point my GF stayed in one country, I went to another. A month later we split via email. Close to mutual. More so her doing. She’s the girl I saw recently. She saved my life.

I had decided before I went away that I didn’t want to be a chef, and on my “holiday” I was going to decide on a direction. Warning – this is a beautiful story:
After ~10 months away, now single, I was trekking in the Himmalaya’s and in a small mountain village (~4000m) adjacent the mighty Ganges I decided that I was going to stay until I had “a direction”. I sat by the side of the steely grey river, melted snow from the Gods thundering down the mountains for the whole day.

I decided to go back to Uni. From there on I headed back to Melbourne. It took me another month or so. Tripping in Kathmandu and Thailand. Smoking opium with farmers in Laos. But I made it back. Went back to Uni, never touched another “hard” drug. I’ve smoked pot maybe a dozen times since I was 27. But I do still drink. Not like I used to at all.

I was dux of class every year. I kept going and started my PhD in theoretical cosmology.

I met my W in my 3rd year as an undergrad. I had been single for 3 years. Not totally because I wanted to be single. When I met my W I knew she wasn’t “the sharpest tool in the shed”, but that didn’t matter to me. She had a heart of gold and that was the most important quality for me. I fell in love with her almost immediately, if not the first day! In hindsight I think I did latch on to her. I’m ashamed to admit that this was partly driven out of fear that I would never have this chance again.

My W BD at the end of my 1st year. I wasn’t available enough. Which is fair, but also to be expected. Anyway, my W has a “problem” with tact and communication and the most hurtful thing she said to me then was that “she loved me like a brother.”

She came back to me after a week. But in hindsight the damage was done then. Since I had “restarted” my life I regrated everything I had done from 15-30. In hindsight, after this BD and R – I was “crazy” inside. Nearing the end of my PhD I decided that I dint want to chase post-docs all over the world. I wanted a family. And despite what I have said about our R. Day to day was fantastic. Except our sex life. She had “intimacy issues”.

The day I submitted my thesis at 35, a few years after the 1st BD and now engaged, I blacked out on the tram. I went to see a neurologist. For the 1st time as an adult. I refused to see anyone for long time – “There’s nothing wrong with me” I would say. The neurologist was confident it was just exhaustion. He asked me if I had any questions. Yeah – since I was ~25 I have noticed my co-ordination in my right hand is not right. TaDa – the magic question and answer. I had run away from knowing or questioning anything about my past.

After that day I was thrust back to the sick kid. That was me! I spent many sleepless nights worrying about the future I could provide my W, my family.

I started in my “job”. A good job, but not exactly my chosen career. Settled for 2nd best so to speak. Then stress after stress (really just hiccups, some bigger than others). W got pregnant. Turned totally neurotic with kids. I sequentially asked, argued, begged for “a” R with my W. It never happened. I started drinking more than I had in 15 years, still not a drunk though, maybe a quiet one.

I just became complacent that this was what my life was. For now and the foreseeable future anyway. I did everything in the house. Even while my W was on maternity leave (12 months each kid), I still did seriously 95% the cooking, cleaning, housework, garden, projects, banking, shopping, buying. I was a hands on father at the same time. My schedule was flat out, and my W had refused to give, I stopped even asking, she did try a little after that, but for me it was too little too late. I even resented it when she did cook once a fortnight and leave me with her mess. I was a chef remember (10 years including whilst at Uni as well). I resented having “sex” once every few months. I dreamt of passionate MingL, but it just didn't happen.

The kids were just getting to an “independent” age. She returned to work in Aug14. She finally agreed that we had to work on our R. 1 week later. KABOOM!

My mum is so grateful that I am finally addressing what happened when I was 9. Both psychologically and physically. My IC’s cant believe how I managed to avoid it for so long. It screwed me up in more ways than I was aware of, or even considered. Just knowing this now has made huge difference.

[Vanilla]

I can see how you avoided your 9 year old issue for so long. Largely you medicated it.

Frankly I think Py you are lucky to only be in the IC chair. Years of self abuse can leave enormous Mental damage, hallucinations and paranoia. You are lucky, young man, (wags head sagely) to be a young father in recovery.

Did the tumour operation cause the dancing eye to stop dancing? Has the scar faded?

Can I ask did your parents ever help you or did you have counselling for this?

Bullying is sadly too common in schools, that is the responsibility of adults, a nominated school adult to check in. I hope it's mandatory now in schools as it is in the UK.

This nine year point is vital, at the time you most needed acceptance, other kids saw you as a funny bunny. And you got seriously mothered by the older girls. It's a dynamic designed to create a kick away rebellion.

There is a great deal to consider, I have copied your post to an offline word pad and will read and think as I go.

So now let's ask those questions of you about the 9 year old stage, what was the most harmful the operation, hospital treatment or the funny bunny stuff at school?

Disclosure: I use the term funny bunny because that is the name of one of my shadows. Funny bunny had astigmatism and wore glasses with one lens taped over. Funny Bunny was deeply clever clogs and had ADD.

Did you advise your mum who sounds amazing by the way, or anyone at school?

In which ways psychologically did this need addressing?

And finally what have you done to address it?

I am researching the physiological stuff so was going to ask was the tumour invasive and packed? you said 10% with surgery and the rest radio. So why only 10% or why 10% at all? It clearly left a scar that was visible, was that explorative and what did that scar mean to you then? what does it mean now?

If I am intruding say so.

V

[Pyrite]

you are intruding - but thats OK - thanks V. I have never discussed this with anyone really. I will be onboard in the next week when I dont have the girls.