How it began.
It began with phone calls.
Desperate messages.
It began with such sadness and pain that I was overwhelmed.
This phase lasted almost a year.
Recorded in reams of messages in Messenger
Stuck on the Event Horizon.
Earlier this month a slow change.
Translating from emotion into something frozen
Now something sinister.
Or is that just my mind racing...
It is a gut feeling.
It is why I'm writing...
The transition began in this way.
A text from a friend saying, 'I've just had your son on the phone to me, do you know how bad he is feeling'?
I phoned my friend immediately: 'yes, this has been going on for almost a year, what has he said to you?
'That he is going to phone an ambulance..I'm worried about him.'
'Me too' was all I could say.
My son didn't answer his phone all day.
No messages
Nothing.
As I cooked the evening meal a feeling of absolute wrongness came over me. I stopped cooking. Covered the food for latter. I phoned his brother who lives in the same town, and asked him to drive over and see what was happening. I began to prepare for the journey to his flat - 3 hours away.
I told my husband and he began to pack water and biscuits for the journey
My phone rang...
And it was my son...
Telling me that he was going to die.
As I drove closer to Service User's address, the phone rang.
His brother told us that Service User had just called another ambulance...
We arrived before the ambulance crew.
Service User was sitting in the kitchen, as white as a sheet, shaking and telling everyone that he was close to death
He told us that this began the previous night while at work
He had become unable to walk
His legs turned to jelly...
And I wondered how he had got home?
But his legs had been OK for that...
So he called an ambulance this morning
And another just now
He was convinced that he was about to die.
I just saw someone having a massive panic attack.
So I could be reassuring, and it was easy not to be caught up in his story...
But I have never seen anyone so far gone before.
The ambulance crew arrived
Spoke to him kindly
Reassured him that this is panic
Took his blood pressure and temperature...
Filled in forms...
His brother stayed outside, the flat smelt of damp and everywhere was dirty.
Periodically a little mouse would peep out from behind the cooker.
His Friends hugged him, shook his hands, wished him well
His brother hugged us and left.
We led Josh down stairs and into the car telling him that we couldn't leave him to die alone and yes, we understand that he isn't going to make it to sunrise...but we would rather be with him in the car as he died than abandon him.
I set off on the journey home
Arriving at 4 am.
And no...
He didn't die.
The first thing I did after getting up was to walk down to the GPs to ask if he could be seen as a 'guest'. The ambulance crew had reassured me that he could see a GP anywhere, and this had been one of our concerns about taking him away from his home...that it would be difficult to get a doctor.
The receptionist was resolutely, implacable in her assurance that it is impossible to just see a doctor; that it would take a week at the very least to register him as a 'guest', we should go instead she suggested, to the drop-in center.
When I got home Josh was up and about and telling us how sorry he was..
Because he is about to die.
I said, perhaps it is best if you die in a shrine room?
And set about arranging for us to spend the day in a Buddhist shrine room...
I thought if he can begin to relax
If he can begin to notice that despite what he thinks, he isn't actually dying...
Perhaps the panic will lessen and we can begin to get back to normal.
All day and latter
He is not dead.
He sees this as just some kind of glitch.
Death is imminent.
He keeps on telling us and we keep on smiling and saying, 'but you don't look like you are dying'...I can feel my sanity begin to slip.
The next day dawned and the implications of what is happening were before me..
His flat.
What about rent?
His stuff...
What about his degree?
It was a panic attack in 2017 that began all this...
A panic attack caused by his dissertation...
Would the university allow him to defer his work?
What about his student loan?
How much money would he have to pay back?
Then
What about me?
I could feel anger rising.
I have just applied for a course for which there isn't a loan (so I've been saving) would I now hove to pay off his dept and miss my opportunity to take up my training?
How much is this panic about being unable to ask for help with his course work? Was he really prepared to throw away his degree when he had just one unit left to complete? What had his tutor done, didn't he notice that Josh was sinking into this other place?
What about his job.
What about him.
What did he imagine would happen....
The drop-in center is a part of A+E
Despite what you may have heard, it was not packed to the gunwales...
We moved smoothly through the system.
From nurse practitioner
Towards neurological tests
To a psychiatric nurse...
Then in the car again
To a psychiatrist
In the psychiatric hospital.
By this time I was feeling disoriented, upset, lost, in need of someone to tell us something...
Josh - not yet Service User just kept on talking about his brain tumors and degenerative disease, and this time he was telling a psychiatrist whose listening skills were aimed with laser accuracy to answer 'is this a person a risk to themselves, or to others'? and 'what else shall I proscribe after the SSI?'
Towards the end, the mental health nurse picked up on my despondency. I said that we needed to talk to a counsellor. I didn't say it because I thought it could happen. I said it because it was true!
I wasn't surprised that he didn't say, 'Certainly, we find it really helps people who come in with someone who is suffering mental health issues, to talk to a counsellor'
I was surprised how he suddenly shifted into using counselling skills...shocked really.
I was in a room with my husband, my son, the psychiatrist! How could I feel that I was in a safe and confidential space and able to let my feelings out!'
I have a whole list of anecdotes about inappropriate counselling that I will share with you one day.
We left with our son
But perhaps that was an only just...
We left with the proscriptions
Our souls in tatters, unable to make sense of what was happening.
Walking through the wind and the rain back to my car that I'd parked in an illegal space because there were no parking spaces.
I felt terrible.
Still. needs must.
Off we went to the shopping mall
Got the SSI, and the Valium.
Bought Service User some new shoes and socks
Ate Coronation chicken sandwiches...and went home.
Our house was now an extension of the psychiatric hospital and we are lower than cleaners in the hierarchy of things.
It has been eighteen days since Josh left his flat and became a patient.
Or service user.
Or someone betwixt and between realities, who does nothing except pace and stare into the mirror.
His death is no longer imminent.
To be honest I don't know when he expects it.
All I see in his eyes is an absence.
No fear or panic, death is part of a bigger narrative of self recrimination, which is part of the anxiety, which makes him pace back and forth, back and forth and the mirror tells him of his demise
It doesn't
But like an anorexic, his perception is skewed by how he feels.
It feels true to him to see decay..
And he says, see I don't heal anymore!
And I say, yep...here's the proof - I point out a pimple that yesterday was angry and red and today has almost gone.
And he says 'I've got a fever!' and I take out the thermometer and show him...no, you haven't.
But mostly he is just waiting, waiting, waiting and honest to god I've seen all this before and so inside I'm screaming!
This is why I'm writing.
I'm not going to start screaming
As long as I keep writing.
He wont take any medication
- because it wont cure his brain tumors (the ones that don't have any neurological symptoms)
- he wont take any medication because???
I have no idea.
He doesn't want any treatment.
- after all it is too late
-how could this be the result of anxiety, he rationalizes...
And I've seen this before.
My husband's sister took the same route
She now sits on a piddle soaked mattress because her dad is too ashamed (not sure if this is why?) to call a doctor.
She says she can't go out, and no she isn't sitting in bed (she is sitting ON the bed, as if this makes any difference!) because she says, 'is waiting for the menopause to be over'. She can't walk - because she has muscle wasting - but she says it is because she fell out of bed, something to do with a demon.
My husband's dad has the same personality disorder
He is a gift for the practicing psychotherapist...
Name the defense mechanism, be warned - pick just one per sentence.
I don't know how to deal with it.
I got angry with him - husband's dad - only once...
And the horrible thing is...
He enjoyed it.
Never again.
It froze my blood.
What is going on?
I want my son to have a nMRI scan.
Perhaps there is a degenerative disease at work!
I don't see any symptoms, but what do I know!
But knowing the cause does not provide a cure...
So what am I left with?
I keep thinking of Chuck in Better Call Saul
Josh's brain tumor is the same thing as Chuck's allergy to electricity... Neither exist
They just make sense of something
And people treat them as if they are ill...
But when the allergy is proved to be false, there is no way to hide from the real source of self recrimination and everything is too painful.
So by going along with the illness, agreeing that there is illness, we make Josh feel a little better.
But the truth is, I'm having to fill in the form to say he can't finish his degree...
And really, we could pull all the bits of work he has done together and give it a damn good try...
But he wont do this.
So I'm going to dismantle his life
He has lost his flat (we emptied it on Saturday - set off at 3 am because he hadn't got a key and someone could let us in only if we got there before 6:30 am).
I think the landlord took the rent...
The form to finish his university connections in on my desktop.
I'm going to have to face the Student Loans company...and see how much we have to pay back.
So yes, someone's death is imminent.
The young man who went to university has died and I'm left with a changeling...
Sure I can be positive
See this as like a System Restore
Tell myself he should never have taken the course he took...
Now he can seek out a better path
Create a new life
But really I just see it as something else
Something destructive...
Only one unit left to complete the degree
Why allow the rage to win?
Underneath it all there is a terrible rage...I saw it yesterday when I went upstairs because he was banging his head against the door frame.
He stepped too close to me and I found myself blocking him.
An unconscious move.
I felt threatened.
I've spent most of today writing this blog.
It has been my therapy.
I make no apologies for my negative turn of mind.
I'm stressed.
I'm not happy.
But I can do better.
Yesterday and today I gave up, yesterday in particular after seeing the rage.
I was frightened.
But, now I'm not.
Or rather I'm now aware that it is there, the discomfort I was feeling is validated, so I can accept my heightened sense of anxiety - it makes sense.
Feeling what I'm feeling
Think of Gendlin and his Focus technique...
Congruence isn't about peace and happiness.
OK, so I let yesterday and today just go....
Now I need to formulate a logical plan.
Firstly what do I think of Person-centered, Humanistic approaches.
Is it the right thing to validate someone's experience so that they will feel their own inconsistency and inevitably wake up?
Rogers was clear in his own mind that the six necessary conditions were all that is needed...for clarity to dawn.
But what happens when there is no self recognition?
Mostly I see Josh's health fear as covering real, raw, terrifying feelings. A kind of - technical term: retreat into a lake of bullshit.
The bullshit isn't the problem
It's just bullshit
The feelings underneath the bullshit, are the problem ..
Lack of affect.
He isn't distressed.
This is the impossible part of this for me...
He is distressed but he doesn't feel it.
His face shows it, his body experiences it.
He does not...
I have no idea how to unravel this.
I understand exactly how my husband's sister came to be left to literally rot...
The only power she had was to make everyone feel powerless.
By the way - this is only how it feels, I have no idea what's truly happening.
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