Friday, 8 March 2019

0bserver

I hope you will all forgive me this post. I'm about to make an analogy, I'm aware that for some reading you make think "that's not right". However having had this image growing not just in my head but in my stomach for the last 24 hours I hope writting it out will bring peace comfort and encouragement.


I spent time with a lovely friend yesterday. They therapeutically parent and have done for many years. I love the family with all my heart, each one of them are incredibly beautiful. As I say though therapeutic parenting is a requirement, they face so many challenges.

I wanted to write as an observer. Someone witnessing the daily bravery and determination they have to not give up. The image that keeps haunting my stomach is of the First World War trenches.

I remeber learning of how the generals made the soldiers go ‘over the top’ of the trenches and walk into the fire of the enemies machine guns. 
They were not allowed to run. The mud their friends falling at thier sides, I imagine the fear must had been beyond fear.
 Disempowered, broken, accepting the inevitable slaughter. I also think that the ability to reason anything out would also feel pointless luxury.
Feeling your life ment nothing to anyone. That you just had to walk forwards relentlessly facing relentlessness.

With high insight we see how awful this situation was how unfair , how down right to beyond our imagination it was to even consider experiencing.

That’s  how I feel for this family, from the children who through no fault of their own are dealing with things they should never have had to. They hold guns loaded with mental ill health.
Then there’s  the parents who equally have to every day  selflessly leave their trench of battered safety to ‘go over the top’ and walk into the machine guns to not knowing if they will be slaughtered that day or reach the other side. Hoping their efforts will bring peace to the great vastness of the war they find themselves in.

It’s Rbbery it's all wrong, it's horrid, unpalatable!, UNFAIR!!!!!! It's awful no one in this senecio is to blame . Everyone is trying thier best!!!!!!!! As an observer it hurts!!!!! 
We have the luxury of only having to dip in and out of the war as we lead very different lives. 
My family reaches milestones I could only have dreamed of and I want to hide them, not talk about them, I want to give them to this brave brave family so they can experiance them but I can't. 

I hope you understand this is not a partroniseing judgemental situation. This is a sadness of love, if sadness of love can be a thing. 
I hope as we bumble on in this life you know I and mine stand next to you and yours in love. 
That me and mine are so protective of you all even if we have no idea how to express it.
 That we see the walking, the machine guns, the size of the unrenting war. We hurt deeply that we can't rescue you all and take you somewhere safe. 

We don’t want you to have hide anything from us or be silent. As the war against  the robbery goes on year after year, I imagine it becomes so "normal" or mind boggling that to speak of the struggles over and over again just adds to the sense of relentless unrest.

Our silence like yours sometimes is only because we see the depths of the situations exhausting you. So I write this blog for you because I want you and your brave brave family to know to the best that we are able we see you. We love you.
 I ask for times of peace,
I ask for times of joy,
I ask for times of breakout, breakthrough.
I ask that nourishment floods you and re energises you all every morning every nighttime.
I ask for peace.
I ask for an armistice day.
 May angels surround and hold each of you, and may you never feel alone, you  are a very brave brave beautiful family.

Sunday, 30 December 2018

Merry Christmas to the good the bad and the survivors

The Christmas session. It's the season of giving. It's the season for caring. Inside me something stirs. Anger. It creeps round rumbling like a smoking volcano. These years it's bearable. Well at least identifiable. I aware there are many kids out there who are not in the same place I am. I'm now 41. I write this on their behalf. I write this in the hope that possibly I can explain to you what they won't be able to for many years to come. I'm presumtious, arrogant but I don't care.

As an angry toddler, child, teenager, young adult etc etc, anger was my most common company. It could be relied apon, it was a feeling that never left. It was something ever present to be managed.

Anger made me "let myself down" anger made be "ruin things" and anger made me "hurt people".
I'm sure you are all aware from various angles of what I'm saying.

Then bloody Christmas come along with all its happy niceness. I was always aware that this holiday was not really for me. It was for nice kids, happy kids, kids who could be cuddled kids and kids who could sit still, kids who would like wearing posh cloths, kids who looked like they were part of a nauseating wholesome perfect family. They were a great threat to me as they exposed all my short comings with total unawareness.

So let me tell you not only did I despise those "nice kids" I would kick and want to hurt them. Make them pay for being so able to be loved and so able to be adored and so able to say the right fucking thing at the right bloody time.

Some times the rage in me when those nice kids arrived or we visited them was instant. Just the look of them and their stupid innocence would making me lunge in thier general direction before a word had even been spoken. Before they could show me up I'd sort them out. I wanted to be better than them, I wanted to show I had control over the situation because I knew Christmas was nice. I was not nice.

I am of corse now sorry for my behavior but back then they just represented everything I wanted but was to ugly and rubbish to have. They and Christmas just made me more aware of the the gulf between me and the rest of the world. They and Christmas just made me feel so lonely and disconnected.  My sadness was only bearable dressed up in anger.

So if you have a carwen I want you to know however bad the behaviour the letting down the side has been, we really just feel very exposed raw and vulnerable. I'm sorry anger may be the only thing we have to use that's safe. I promise you you are loved by your carwen and I ask yet again for you to still love us even though that's the last thing we deserve. I also say sorry to you on your Carwen's behalf because I'm sure that I they could they would want to say that to.

Merry Christmas everyone the good, the bad and the survivors.

Friday, 2 March 2018

Goodbye body therapy 

Dear Karoline,

Sorry it's taken longer than I thought to get this email too you.


After our last session when we worked with my arms and I new I had sort of reached the end of what I could manage. I guess with all the things going on in life some places are to distracting to go near. I'm aware this will leave things inside me but I kind of feel it's for the best.


It wasn't an easy decision to make I was so angry with 1-8 and number 9. I couldn't work out what it had all been for if the process was going to be left unfinished. 


Then on the Monday after our last Wednesday the `boat` I had inside me erupted and I had to go to A and E. As it was 3:30 in the morning Gareth couldn't come with me because of the kids. I faced A and E on my own and once I was on a trolley they wouldn't let me walk around so I had to face that, but with the work we had done on the table I was able to and kept on my left side. It turned out I had a stone caught in my biliary tract and three huge stone were found in my gallbladder. My liver was and still is very upset. 


But as people came and went and I was asked a thousand questions I knew how to answer (by sitting up so 1-8 could talk) I knew how to scan my body when there was a quite moment so when the next person came I could tell them how I was `feeling`.


I had drips put in my arms and I new to expect the arm twitching (even if they didn't). I had doctors put stethoscopes down my back and feel under my chin and ears and prod my tummy!!! And I just kept imagining being in the therapy room. Later I was on a ward as they want I monitor my liver and oxygen levels and I knew I needed to have space so asked for the curtains to be drawn.


I'm sure your getting the picture. It was as if all we had done in the year we worked together just came together for that crazy 24hrs in hospital so I could feel safe. All the way through it I kept thinking 'I want this to be positive` don't fall in helpless mode, keep identifying, keep thinking "what you need to do to feel safe". And of corse all the way through I kept picturing you and your liver and the crazy fact that we had talked about that just mad me smile. I can't thank you enough for all you have done to help me get to a place were I am. I've been through that experience and in no way feel disempowered, and managed to communicate and stay my age.


So since that half term week I have also experienced ambulatory care, blood tests every few days, two different GPs, consultants, medical teams, surgical teams, it's been full on!! Tomorrow I have an MRI to check there are no stones stuck they couldn't see on the ultrasound.then they will operate to take my gallbladder out. My LFT's are not getting better so they now want test for autoimmune stuff.


But it been so weird I honestly have no idea how could have done any of this a year ago, it would have been impossible. It's lovely as well for my kids to see me go through this and me still be able to stay connected to them as mum, they have not see me scared. I just say to them 'this is why mummy did body therapy'.


Anyway I know I've said it already but THANKYOUUUUUU!!!!!!!

Keep going with all that you are doing in the field of body work it's so important. I think I the end it will be seen as weird that the body was ever let out of healing!!!!! I hope you and your fabulous liver are doing really well and you enjoy Poland next week. It was a privilege to walk with you this last year and I smile as I know you will walk with many others and help them to.


Joanna



Sent from my iPad

Friday, 16 February 2018

Gallstones

Early Monday morning  I faced something that I thought would be one of my biggest fears. At 3:30am I new I needed to go to A and E. Making the situation even harder was the fact I was going to have too do this alone (my husband needed to stay with the kids). As an autistic adult I knew that there would be a lot on things I might not understand, there would defiantly be triggers, sensory overload and new situation/people anxiety.

My experience at north mid was incredible!

The reception staff were clear and helpful when I arrived unable to talk.
An assessment nurse took time, I gave her my note explaining what was wrong.
The security staff stood near me as a fight broke out in the waiting area making me feel protected and seen. A doctor helped me through to a bed behind the assessment area, telling me what would happen, she told me I was her last patient.
I got introduced to a nurse called Sam, he explained how I should behave (I had no idea what was appropriate or expected), he said that I didn't need to sit up and that I should "be relaxed and be looked after today". A lady took my blood. Another doctor with a headscarf and blue handbag came into the cubical speaking very calmly, she ordered me a scan at 10:45am. She talked to me about a walk for cancer she had done.

I met Rome (sorry I hope I have your name right) the amazing  porter with 14 grandchildren and great grandchildren. Rome likes rum. He took me on the trolley to my scan and helped me to get over wanted to hide my head under my coat.

In the scan room Daniel an (Alex Brooker look alike ) talked about "where's wally' being on his Dentists ceiling. A quiet but solidly confident  man in a blue top looked at all my organs. Daniel also said not to look at doctor Google he is usually wrong.

Rome to my surprise also came back to take me to a ward. AMU. On the ward I met "room 12" Tracey who talked to me about how the drip equipment worked (I love learning things). Then  there was another doctor with a silent lady who held clipboard, a healthcare assistant, a lady from pharmacy, a food lady and a guy who was going to empty the bin, but didn't cause it was not full enough. He mopped the floor and  cleaned so well! (I am  cleaner so I admired how he even did the silver bottom of he doors). Later he noticed when I had moved to bed 22 and said hello.
In bed 22 I saw lily in the bed next to me the lady opposite me who liked ham sandwiches and another who groaned a lot.
 Next came a tall nurse with a  small ponytail. I heard how he helped  the other patients when their curtains were drawn around their beds he as dry kind.

Visitors invaded our ward but we're not allowed to take over control even though they were very loud. Shift changed and a new nurses came, he also looked after the old ladies with compassion kindness and calm. Then came another doctor, a surgical team, another pharmacist, pain relief arrived without me having to ask. The curtain got shut when plucked up the courage to ask.  (I needed to have a break from all the sensory overload). All the other things I was worried about not being able to ask for because I often can't speak when stressed kept appearing, food, tea, water, the heating would come on before you could get cold.

Now mulling over my experience I have nothing but gratitude for all!!!!! Thank you so much!! I thought I was coming to hospital alone.You were all there, ready to step in so that I was anything but alone!!! Your compassion kindness and communication were so good. I always knew what was happening and what I should do. MASSIVE MASSIVE THANK YOU!!!!

Joanna Hawkes  
 

Sunday, 20 August 2017

A hypothetical moment

Looking through steely stubborn eyes. I survey the situation. Anger boils and curls through my body. Inside my mind shouts expletives. "F***er , you little f***er!"
 "I hate you you little pathetic s**t!". I'm looking at my little sister as she gets a cuddle from a family visitor whose just arrived.

Why am I so angry, let me explain. 

As I look at the lovely scene in front of me, I know all I am going to do is mess up. I have known this since I found out my mum's friend was coming (three days ago). I knew I would be the one that will let myself down,  the one that will bring shame on my family. It will be me that has to try cope with the  mess and whatever mess it is that I will make. I know I will make one, it's what I do; I am so predictable. It's all so bloody pointless my anger flies around bubbling like an uncontrollably firework.

My mum tells me to "calm down".

 "Calm down! Calm down!" 
I want to scream back!
 "why are you doing this to me?" 
"Why are you putting me in this situation, you know I can't do this! I'm rubbish!"
"Why do you always do this! Don't come near me I  hate you! I hate you!" But I don't say anything. I know that's wrong and my attitude is wrong.

My mind is seething "Why are you letting this happen to me, YOU HATE ME!"

Miserably I try to communicate, I try to assemble some right ways of creating sentences. I fight trying to overcome all the "little f***ers and fireworks that are assaulting and drowning me. I must find good words, good words to say. I must use my words, not my fists.

All I that comes out though are angry words. Words I have never even heard or thought before but yet find flying out of my mouth.

"I don't like your friend! I HATE YOUR FRIEND!". 
"I wish you had no friends!"

For good measure my hand flies across the air and knocks a glass of water off the garden table.  Instantly, as the water hits the floor and everyone gasps, misery floods me. 

Now I hate me. I hate me more than anything you can image. In the same moment I'm also being told just how horrid I actually am by my protector parent for not saying hello nicely like my sister and making a scene and ruining it for everybody.

I give up and am completely broken. No one notices this as I'm sent away from the situation and placed in the kitchen.

From here I can see my sister getting another hug from the newly arrived visitor. It hurts, as if my rib cage may crack under the pressure. 

I wanted a hug! I want what she just always gets without trying. I want to be out there with them all drinking cool drinks in the sun. I hate my sister! She never does anything wrong!
  • I hate the fact she's so "cute"! 
  • I hate the fact my protector can't see me as "cute"! 
  • I hate the fact that even if they did see me as cute I would not be able to receive that comfort that safety. 
  • I will never be like her. 
  • I always ruin everything that's nice.
  • There no point trying to hug me or read a story to me I'm to angry, 
  • I don't sit still. 
  • Now more than ever  I hate myself.
  • I hate this life and I hate people. 
  • I hate everything I am hate! 
  • I am anger! 
  • I am rubbish! 
  • And I am not nor never will be huggable.
  • I will never have the very thing I want because I am me. 
  • I'm not sure how to handle all this emotion flying around me. I realise to my horror that I have been a scratching a knife deep into the kitchen table. 

I don't know what to do, where to go. Oh please please let me disappear really quickly. Concrete fills my body and I jump up on the table to sit over the gash. 

My mum's friend comes on to fill up her glass with water. "Hello Carwen, how are you?"
All I can do is hang my head as I'm unable to reply, everything is to horrible for words.

"Answer my friend Carwen", shouts my mum from the garden; I am still speechless. I know what I'm hiding and black hopeless doom is drenching me. I wish I was dead.

"Oh ignore her, she's feeling sorry for herself" my mum shouts at her friend, "she can stay there until she learns to have manners".

I ruin everything for everybody. 

I am a horrible nasty little spiteful little girl.

Monday, 29 May 2017

Deep calls to deep.

Deep calls to deep they say. Right now I need to know deepness, I need to be seen. Not on a surface level, not even on a sub 10 levels below. I need the very pit of my soul to be comforted. 

Deep calls to deep they say. It's true. I stand and look around. The noises are to complicated to unravel, it's all to bright to see anything. Encouraging compliments mean nothing there well meaning intent do not even dent the heaviness of the day. Inside I'm shaking and lurching, doorways are to complicated to navigate. In response number nine just stops moving and we all sit frozen. Fireworks shoot and blast around our arms and legs battering us internally. Thoughts bombard and argue with each other. 1 to 8 try to help, try to care but in thier hast they just add to the confusion.

Carwen has that program down loaded?

To answer this requires an impossible amount of cross referancing

I can not explain 

I cannot fine words (I'm writting this to help me find them)

I realise that if I'm not going to ruin and waste today I need something to sooth my deep. I firstly put on my head phones and use music to soak in. Then I tidy and repack remake our room (we are on holiday). I make to beds line up all the patterns on the sheets, make neat piles of the cloths the kids will need for today.

Next I sit turn up my music in my ears drowning all my voices and start to type.

Logic appears as I type. Basically we are moving apartments, tomorrow we move from one part of the Island to another. I inform zippy I have left the planet for today. I haven found a deep yet that can match mine but at least I can understand its presents.

Sunday, 2 April 2017

Apologies

An apology to number nine.

I struggle with CPTSD. To survive my experience of the world I split my self up. 1-8 are the voices in my head. They are remnants of when I used to walk in 8 different personality types. Number nine is our body who has had no say for years. 1-8 could not cope with what number nine carries. For all our sake, so we were able to function 1-8 stayed in charge. This year marks the beginning of the journey we are all on to work out if it's possible to lay down swords and join each other.

We are well into body therapy now! (5 months)

Using a combination of psychotherapy exercises and massage. All nine of us are stumbling on our colourful journey. The aim is to integrate on all levels. Body and brain, neuroplasticity comforts our amygdala. Frontal cortex meets real life limbs and frazzled nerves and stays in connection still able to think.

We start by just trying to identify 'feeling / touch'.  1-8 being able to understand and no longer be scared of the trouble number nine may get us into. Number nine not melting down or kicking of our fight flight freeze fawn response.


As we journey number nine is starting to throw out emotion alongside feeling and sensation. We 'all' feel touch in our tummy, jaws, arms and fingers; managing all to stay present. 

1-8 struggle to put identification to these sensations and some of these sensations now come with memories attached to the emotions.

I guess this is where I need your help. I need to write to bring closure. Writing the process down and know it's been heard is really important to me. I'd like to share one of my first integration stories.

It all started about a month into therapy. A sudden convolution in my tummy exploded it literally doubled me in two.  I was in bed at home. I'd  had a couple of glasses of wine, Netflix was on but all I could do was groan as repeatedly our breath was caught. 

The next convulsion would come. Number nine would literally crunch in two. I knew this was coming from my tummy musclesand there was no pain involved. Strangely I did not feel scared.

 Being able to remain thinking allowed 1-8 to consider what was happening. Viewing the experience like medical students in a theatre gallery. 

Like birth contractions it kept happening. Even when I hadn't had wine and over days several unexpected times. We all tried to grapple with what on earth was going on. A conference was called, a body brain meeting.

1-8 pleaded not guilty, each voice presented what they considered to be going on. There seemed only one culprit. We all turned to number nine. 
  • What are you doing?
  • We can't function if you act like this.
  • We need to 'do life'!
  • Are you trying to cripple us?
  • We are struggling to stay civil.
  • If you keep behaving like this we will have no choice but to take over entirely and leave you!
  • You are too much trouble!
  • We are angry with you!
  • Aggghhhhhhhhh?
  • Stop it, stop it!

Then and only then after at least a week of squabbling and anger our hippocampus gave us all a pin point.  Number nine was trying to remind us of when we walked in a field.

 At the time we were visiting a neighbours farm to use their pool. The field In question sloped up the side of a hill. We are 10 years old. 

Roaming out on are own in the African bush was a normal pass time. No one knew where we were, but we weren't creating stress so it didn't bother anyone. Scrabbling through some bush scrub we found ourselves behind a group of horses. Not knowing about horses we walked up behind them.

All we can remember next is a dirty great thump in our tummy. The whole world momentarily went black. (One of the horses had kicked us in the stomach). The blackness reseeded, doubled up with no breath and smiling as we recognised this experience as being 'winded' (we knew we would breath again). There's was however an the extra problem of being catapulted down the hill.

The falling and tumbling was not our primary concern, as we knew we could take that. The thing that terrified us was this:_

We no longer had the ability to hide and someone might see!  
This would mean being in trouble!!!

Thankfully no one saw. Swiftly we considered how to make this situation 'not have ever happened'. Getting up we stood straight, blinked  and sucked in the pain. We then neutralised our face and walked back and over to  everyone else by the pool. 

Putting on our swimming costume in the toilet it came as a relief to see the scratches were not to noticeable. The horse shaped welt on our stomach already turning blue would be harder to deal with "No it won't" and we smiled again. "We shall keep it hidden". Occasionally we would have a look. What seemed like years and many colours later it had disappeared.

Numbers 1-8 real back a stare at number nine:
  • Out of all the things we have been through your choose that as our first hurdle?
  • What on earth are you thinking?
  • That is not important!
  • Your being ridiculous!
  • This is not a game you know!
  • We are still angry with you! why make such a fuss?

 Then we looked at number nine and realised it mattered to her. She wanted to tell us it hurt. It hurt physically and it hurt to not be seen. It made her withdraw from us all further as it was quite obvious she didn't matter. 

That it mattered to her should be enough for it to matter to us all. 1-8 took a a sigh. Guilty thoughts that we should be dealing with much bigger and important events will have to wait. If we are going to learn about each other and respect each other then part of the journey is realising that number nine is probably very sensitive and that's OK.