hey V, responding here now from old thread. ----------------------------
I can see how you avoided your 9 year old issue for so long. Largely you medicated it.
That I did. After I returned to Uni I effectively medicated, distracting myself through study.
You or your body were smart enough probably subconsciously embedded to stay just this side of serious damage. I think no matter what your mind wasn't going to let your body be damaged to permanent addiction. Probably as a result of you surviving and your tumour didn't. There is a sense in which having survived a major life illness, self protection arises for the rest of your life.
The subconscious has acquired belief patterns which state go no further, there will be damage, it knows because of your history. At those times the subconscious stops drama and damage. You go to the brink and no further, Childhood or even later clinical damage does that, it's been studied for a long time. There is also a physiological tolerance mechanism in play, to the body's own opiates and pain.
Fight for survival physiological gives children 'old' souls and a strength beyond their biological age. In that sense the issue isn't the illness itself but the location of the illness and the physical markers. My friend has a scar across her chest, there was a compact tumour across her diaphragm. That scar is her badge of courage, she had her children call it 'smiley' scar . Sadly a scar from a brain tumour has a different sense to others which get in the way of the pride of survival, none the less that survival is still there.
--------------------------------------- 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.
I am definitely lucky. Especially mucking around with huge doses of hallucinogens. In the extreme case I know a Japanese guy who last I heard couldn't tie his shoelaces anymore - after a single episode. My STX BIL is now psychotic after a brief stint, etc, etc. But in terms of the drug ab"use" I think I am way past recovery. Dealing with the underlying issues that were medicated - well - that is the theme of 2015.
I am not so sure. With compact tumours, especially large ones the body 'misses' the tumour, it hasn't recognised the tumour as damage, it's integrated and even has its own blood supply and often nerves, sometimes they have odd twists, like teeth or hair. The body has adapted to the compact tumour living within it, it is self, and even white blood cell counts are normal. The body isn't trying to destroy the tumour.
The conscious mind knows that a tumour is damaging but the subconscious mind hasn't that knowledge. Neither has the body that knowledge. There is loss and grief for the tumour within the body and surgery itself is traumatic. To a sense we replicate what we are comfortable with and thence the body can replace the effect of the tumour and the body's opiates. It's familiarity seeking replication with acting out and artifice to return to the comfort zone.
-------------------------------------- Did the tumour operation cause the dancing eye to stop dancing? Has the scar faded?
The nastagmas only occurs at the extremes of looking left or right. But no, it is still there.
And the tumour has gone completely? So this is residual damaging.
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Can I ask did your parents ever help you or did you have counselling for this?
My parents - yes, they "helped". But counselling no. I masked it well and appeared at least to be over it I guess.
There is the sense here in which there is a concentration on the physiological illness. It's hurtful to be ill and parents struggle with it. They want it to be over. Too little attention after intense illness is damaging, it's like turning off a tap, it tells a child this is over, the physiological part. It isn't over, it's just beginning. It's a perceptual filter that it's finished but there is a loss of a physiological part and a visible scar that permanently announces the losses.
It's inescapable because of the scars visibility, which is fine if it's smiley scar, a badge of courage, but no so much if it's defined as damaging in the eyes of others. It denies the realty of a serious battle won and for survival. To a large extent the true bravery of your battle for survival is subject to public denial. I think it isn't the illness that is the issue but the failure of the conversion of that illness to acknowledgement of bravery and survival. It denies the experience of the child when it needs to be validated.
------------------------------------ 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.
Yeah - I worry for my kids. Many initiatives going on to stop bullying not only in schools, but also the workplace.
Bullying is beyond denial. This is saying there is ostracism and the battle was not worthy. Truly awful for that 9 year old who has little ability to cope.
-------------------------------------- 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.
This is something I wasn't explicitly aware of until now, the age being a significant period in exactly the regard that clobbered me the most. Its funny, i have NEVER considered the older girls "mothering" as anything short of wonderful, but I suspect you are exactly right about the rebellion.
It was wonderful, of course, it was protective and caring. But these girls although older were children and not mature enough to help you cope with the world. But for you, there were more apron strings to cut loose from. To obtain your independence, it kept you in a more child like state, although part of your survival in the world beyond your family. I think there was a price to pay for it too.
--------------------------- 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?
This is easy - the physical pain was easy in comparison.
Thats my understanding too, and makes real sense. This is your strength too. The ability to survive the pain is a superhuman power, and it's deep in your internal physiology. The body opiates needed to do that build your tolerance. It assists in building your tolerance and has been instrumental in revising damage. Truly this is your route to freedom, this great strength has carried you through so far, whether you want it or not. My sense is you needed to hang on to the scars until you acknowledged this to yourself. You did this for you as a sort of defiance and partly as a badge of shame. Jellyb has the same with the jigsaw scars. Once they have served their purpose you can let go.
Of course there are issues with this, the external badge is reduced. That too will release internally but you will look and feel different to yourself. The acknowledgement goes. The link will be reduced.
------------------------------- Did you advise your mum who sounds amazing by the way, or anyone at school?
My mum yes. She was supportive etc. I guess the thing was that I put on a brave face so that she wouldn't worry.
And of course as a parent you now know that wouldn't have happened LOL.
--------------------------------- In which ways psychologically did this need addressing?
And finally what have you done to address it?
I am still thinking about these things. In a sense it is clear that I needed acceptance. It was not possible for me to be satisfied or to feel that I was accepted by those that matter. I wasn't accepted by the majority of kids, and this wasn't something I could change. I suppose I knew this and just wanted time to pass and reinvent myself. I see now as I internalised and believed that I wasn't accepted, I developed unhealthy core-beliefs about myself and they subsequently became what I strived to disprove. The fact that I strove to a PhD in the hardest thing I could find (that still interested me) was I think in no small part due to this. In fact, I have always put myself last and what I WANT because in a sense IDK what I want. Maybe it is because for many years as a kid I wanted acceptance and I couldn't get it.
It is also your unique strength. I think that I really want you to know and understand that. The subsequent railing, struggles for acceptance were amoung your peer group and of course to yourself. You can be 'mothered' and that's ok with you, but ultimately those females who do this have to be broken away from. Hence you 6 year plus R resulted in escape. I am wondering about that I haven't yet formulated my thoughts. I am 'stuck' with the 9 year old but Have no desire to be your mum!!!
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?
IDK these terms sorry - I know the tumour was benign, but growing. They operated for 10% because they didn't know until then how much they could actually cut out. The neurologist I saw admitted that if it had've been 10 years earlier - i would be dead. If it had've been 10 years later - they would not have proceeded the way they did, and I possibly wouldn't have the issues with ataxia that I do now.
The scar was a huge deal when I was younger. So much so that my Mother went to see a plastic surgeon to ask what he could do. Basically he did manage disguise it to a large degree. Even still, I was self conscious about it. Now I don't really care. It isn't obvious at all. The scar, the ataxia, neural damage to my face - on occasions when I have discussed this with colleagues (recently because of my op) - they have never even noticed. I find this hard to swallow, but it is possible I guess.
The ataxia is just with the eye?
When I lost my hair due to my chemo I wore wigs. I decided to make it my thing, I had blonde, red, brown and even a purple wig. Long curly, short spikes and layered, the actuaries in the next desks along to my team claimed not to have noticed. I believe it, most people are most concerned with themselves. It's ironic, as children exclude but adults are lacking observance.
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I am still thinking about the other issues raised in you very strong open and vulnerable post. Being able to be vulnerable on these issues is an enormous power to healing.
Of particular interest is your description of the girlfriend you describe as 'saving your life' and of your W who you describe as 'not the sharpest'. There is a contrast there which is worth an in depth examination. The former seems as if she is a parallel to the girls in school, a protector or saviour. Not necessarily 'motherly' maybe exhibiting some of those traits.
I am pondering this. These are my thoughts as feedback, I hope it's useful.
