Lived Experience Forum

[Zoe7]

Hi gorgeous @Sophia1 💖 Don't pressure yourself to reply Hon - especially if you are having tech issues logging on - I am sure everyone will understand that you can only do what you can do and when you can.

It is just lovely to 'see' you 💕

[Sophia1]

will be back at sometime @Zoe7 and thank you

feel need to reply to those who have tagged me earlier.

I know that you understand this

[Zoe7]

I do @Sophia1 💖

[Sophia1]

Thank you again for your lovely post that you wrote me on trying makes it worse thread.  @tonys 

You are not alone in not remembering which thread you are on.

That happens to me constantly.

I call it a form of dissociation and confusion writing on a computer in a maze of stories and heartfelt words written by people we do not know.

So surreal.

I don't think that I told you that I slipped at the beginning of 2022 and ended up with quite serious injury and concussion requiring hospitalisation and surgery.

I am still trying to recover from that, survive, loss of mum; interference from twin with narcissistic traits and in between incoherent pleas for help from son who since being in dreadful public mental health system involuntarily therefore under an order fled the state yet again.

He is missing again still as you know.

This I have been dealing with on and off for nearly 9 years.

I am under review of the brain clinic in this state as still have side effects from post concussion for what has been classified as mind traumatic brain injury. Impact from crashing to a hard tiled floor.

This causes confusion, balance issues, interference with spatial awareness.

Distress and anxiety is heightened when medical people in private section as well pressure me to answer questions that my mind will suddenly not be able to comprehend. I try to ask questions to understand their intent and most do not change their wording so it just gets out of hand and I can end up losing ability to find words that are basic, sometimes the ability to speak.

So I am weary from trying to respond to many who have tagged me and I have not yet replied to.

Leading me to be on the computer for far too long.

I have cut and pasted some of a response to a friend who is in a similar situation to myself although she does not have long term symptoms of mental illness rearing their ugly tendrils, or post concussion blech recovery.

This is some of my reply to her:

Thank you for your beautiful words @Krishna 

I want to share with you that I feel safe over here, in this space that you have created, reading and responding to you.

That is not easy for me to find and feel.

I feel less alone with the lifetime weight of struggling with someone who will only ever truly be able to help himself.

(He has become hardened by rejection from the health sector at all levels, educational system, even advocacy)

He had trauma as a child as early as kindergarten, school, bullying, teasing and an educational system that was incapable of supporting him when letters were sent to them from speech pathologist, psychologist with IQ test results. His IQ was very high at age of 10. he would definitely be on the spectrum or aspergers this was not  a concept known at that time. I have been told since it is as a result of a group of parents in that decade continually standing up to the professionals that research grew in the autistic spectrum range. Thank goodness for something coming out of it.)

I am different myself, as was my dad and we all have unusual intelligence levels in different areas that do not really fit. Why am I not surprised? I have been told that my whole life that I am different. Do I care anymore? No. I do not like labels or boxes anyway.

I digress.

I never know where he is living unless he has returned to his father's temporarily which always goes horribly wrong and further exacerbates his symptoms. They are two volcanoes forced to be confined within a building. Boom.

I try to be there for him when I know how and when in hospital which he always lets me know, attempt to reach out to help him through others at same time respecting his privacy, dignity and autonomy.

This sometimes works briefly then collapses as the system is really to my mind purely a band aid. They also try to put words into my mouth and fabricate any exchange that we have when speaking to my son. This further serves to test very strongly his trust in me. It takes great effort to reassure him that I have not said their lies.

Any hard work and efforts, results no matter how minimal, achieve collapse as any glimmer of trust, hope that he gains is wrenched away from him so heartlessly as he faces the cold world.

The world is not equipped for the vulnerable.

The vulnerable make mistakes as they are still human.

They have so much trauma and suffering that remains with them.

Then there are us and we become burnt out.

I am tired of being told that he hates me and I have never loved him or done a single thing for him in his life.

This hurts even though I know it is the illness talking and the next text message that I receive weeks, if not months later is so different.

He lashes out at his dad and I as we keep in touch separately of course no longer together after decades.

He blames us for his not receiving the help that he really needs.

We cannot get him off of the merrygoround where they cannot accept that his illness started from a very young age and its foundations are trauma from kindergarten, school, teasing, cruelty, cruel dad also, the list goes on.

I even recall now he had several injuries that were traumatic as a result of accidents, some concussion and I wonder if there is acquired brain injury from that which of course is labelled as one thing as you know.

We have become the system who has never been there for him. He hates the system through us as the system does not listen is only there under detainment against his will.

How can any human gain from that zero support?

Then there is the grappling with the sending money which I always emphasise ...food,accommodation, clothings, essentials...

I dream that I might win a lottery so that I can take him to a nordic country where they see people as individuals with suffering not label them with illnesses.

They speak to them as a person who has something to offer the world, not a person who has failed again. They given them a voice and they listen and allow them to hopefully feel heard at some stage as they are so very tired of holding themselves up and surviving.

This is a dream. He would never even get a passport these days.

Still missing. Though I have an idea of an area just not type of accommodation or even if only very short term. Only a thought though. I could be way off track.

I hope that this does not dredge up pain for you.

I hope that in sharing my anguish and helplessness it further serves to show you that you also are not alone in this world.

We have shared in the past how very hard it is to find even professionals, family, I don't tell friends, most family either. They are not listeners.

Let me know if you would prefer me not to write about this pain.

Sophia1

Letter changed slightly

To Tonys

I have not wanted to share this enormity with you as you have your own journey that you live with your own stories of survival.

You have reached out several times to me to talk to you.

So I now feel that you want to hear my story as you want to give back some support to me.

This I understand. I would feel exactly the same.

I truly thank you for this.

You help keep me here also.

I now know that you are more at home and perhaps even safer in the living off of the streets world which I have not experienced.

This I hope that I can gain some small insight into from not your personal stories that you do not want to share.

More what you have learnt and how you survive.

This is what you can offer me Tonys.

This no matter how short gives me something to hold onto.

You are in a way a connection between myself , the streets and my son.

This is not a responsibility or burden that I place upon you at all.

This is a response to your asking how you can help me.

I trust you now to recognise your boundaries , confidentiality and own safety.

Your choices.

You have come a long way Tonys.

I am so very proud of you and to have been a small part in your journey on these forums.

Thank you yet again

Your friend

Sophia1

ps if none of this makes sense.

perhaps ask the book keeper to scan parts that might.

Is much easier to write about than to read and try to understand.

[tonys]

Hello there   My friend.  @Sophia1 .    We'll  I may not hear from you often,   but when I do,

its like watching the Hume dam  spillway.   Magnificent,    Someone trusting enough to release

more than the usual  Tupperware  talk.

I knew about your son.   I did not know about your  fall,  brain injury,  hospital stay,  Your son hovering between your influences and help and efforts and an ex partner,  the father, and the clouds of chemistry in that mix. and where does your hubby sit with all this.   Then you are fighting for outcomes not just for your son,  your self,  and your place in the circle of all that encompasses.  A way too  complex life.

You  are   "overwhelmed"   .  In the most complete sense of the word.  but we will look at that in a bit.

First,  I had better say that nothing you say is ever going to overload my ballast.  We are friends and the only thing I worry about is that you don't give me the full picture.     

A day on this place would give you a little understanding of why you are welcome by my fire any time.   Counting the book keeper I have 10 to 12   Ladies every day for 7 months of the year,  till I plough it all in, plant  cover crops,  then we do it all again next year.  I wont even begin to tell you the problems they bring to couch in the office.  Tissues,  chockies,  cuppa and days off,  what ever it takes to keep em happy.  I wont say ive heard it all,  but OH  boy,   you can imagine. . .     So  I only get a little disappointed If they ever don't share.   Yes they are employees but we are family. . .   I may leak the odd tale of tragedy,  but I  seem to be able to sit next to tragedy and adversity father well.  Stalkers and aggro get to me. . .

but then I got you looking out,  and I had some software installed that blanks out  names automatically, of people I dont want reaching me.  They think I can see their name.  all i see is a blank,  or the whole post is blanked.   Trigger avoidance   Its beautiful.    

So   back to you my friend,   I know its bad taste and you wont do it,  but if ever anyone needed to throw  some stuff in a suite case and have a holiday,  somewhere ,  anywhere,

Its you.    Nordic countries and social thinking.   we do watch the same shows,  don't we.

I always did say,  our government turned a lot of Aussies in to super manicuring,  wealth accumulating business minded folk,  and I'm not sure where we are headed as a nation.

but yesterdays election result does give me hope.

We take what  is   and do our best.   I have no doubt that you have a brain injury.  MRI  showed nothing on mine.  but   a     C T   scan clearly showed everything.   .    your brain can recover.    Autism is my killer. 

up hear,  the brain injury clinic offers all sorts of support but it ends after 5  years.   One expensive doctor,  and a very expensive shrink.  plus surrendering a stubborn outlook,

problems solved.

As for how I survive on the streets when I go walkabout.   Well  thats a whole serries of chapters,  some from the past,  too horrific to tell,  in fact I think sane may have edited more than one,  and now as a skilled actor and  master of disguise,  Its almost enjoyable,

I do have advantages.  Although totally harmless I look frightening .  I dont have substance problems and although I like a sip,  never enough to dull my skills as a street tactician.  

Above all,   I came from a very violent and impoverished past so thrive in circumstances that

those that are raised on more that,  cant .  I will reread your letter with more considered eyes

later and write to you soon.   I just had to reach out now,  as I'm worried about you.

I  hope you can find for now something that brings peace and a reminder that there is still beauty to be found, and peaceful eyes will be in demand to fully understand how to find answers  to so many difficulties you face.   talk soon.

I pray for you and your loved ones

Take care my friend Sophia.                                              tonys  m b 1

[tonys]

@Zoe7   yipeeee   good news.  now   don't get up.   We will talk when you are feeling chatty.

Might send you something from uncles tonys story book.    Take care Zoe.  Till schools back in

Its fishing pole and yabby time.    Yaaaay  . ..        tonys    m  b  1

[tonys]

hey @Sophia1 .   its a little late but just looking in and taking little bights at your  letter again

Can I ask,  2 things strait up.   roughly.   where do you think your son might be.

Does he have funding of any kind what so ever. . .

I do have a lot more I want to ask.  but not sure where that sits with you.  I have to pick up a huge trailer tomorrow.  but wed I will  reach out to you, soon as I'm  back.

Was a real   eye  opener ,  your letter.  try and sleep my friend. . your friend    tonys...

[Zoe7]

Beginning to feel better @tonys - still very tired but slowly improving. I am going to try to do a couple of things around the house today and tomorrow and see how I go. I am not rushing going back but hoping to be able to attend a PD on Wednesday and then back to school on Thursday ....see how I go.

[tonys]

Good on ya   @Zoe7 ,   I'm feeling better knowing you are.   Now If you get to  to thursday and don't feel right ,  please mate,  stay home and rest   rest   rest.  .  . .

I've  got my two best thongs and school bag ready.    The thongs are different colours and sizes,

but we  have no control what washes up on our beaches.  .  .  .   tonys   moon base one.

[Zoe7]

Oh @tonys you did make me smile ...I live in my thongs - have even worn them to work a few times when I have forgotten to put on shoes lol I say I have my casual thongs and my work thongs hahaha 

Still very tired but at this stage I am still planning on attending the PD I have tomorrow then back to school on Thursday so I will meet you there first thing.... I will have to organise you a seat but don't worry, I will place you next to some of my quieter students so you don't feel too overwhelmed 👍😁