I have a lot to say.
Many know I haven’t written in a few months. That’s because I’ve gone through some stuff that is so painful and confusing and intense I could barely live through it day to day moment to moment, never mind write for an audience.
Basically December 15 or so, the day I went on my second tour of Clayton House, I had a major panic attack. Several in one hour. I was with Jonathan at the time in one of our rare meetings.
He said it was due to so much anxiety and other emotions built up that it was expressing itself physically.
For those who don’t know a panic attack is usually, a sudden full on response of the body and brain being so overpowered they act as if preparing for major threat. The heart rate goes up you feel out of control of your body shaking sweating can’t speak and other symptoms. Everyone experiences it a little differently.
For reasons still unknown that I may never know, I experienced mine as an intentional physical attack. Often people feel like they’re “going to die or have a heart attack” when they’re having them it’s that physically compromising.
I didn’t. I was afraid I’d be sent to the hospital for difficulty breathing when I knew it wasn’t medical. What I did feel in my whole being was that this was all caused by someone “trying to kill me.” That they were going to kill me, were purposely doing this and this would certainly stop when Jonathan stopped the attacker.
He didn’t get the significance at the time of the difference be4tween “I feel like I’m dying” and “Someone is killing me you have to stop them.”
But it became quickly very important.
I have no physical trauma, physical abuse, sexual abuse, birth trauma that I know of. The only thing I can think of is being born 24 weeks premature and being in the incubator, as well as the many operations I had on my eyes as a baby.
But even that I don’t think explains what happened next and what my daily life is now full of.
Somehow this experience of being physically overpowered resonated with a whole lot of different r3esponses internally. Like an earthquake or hurricane had hit my brain/ body connection, that place beyond rational thought. And uncovered many things that I never ever thought I would face. Would have to face as I never thought I’d experienced the trauma to cause them.
I won’t go into it. That’s why I haven’t been writing here. All symptoms are quite controversial and as I know many read this who have known me awhile, even as a blog reader, I don’t want to trigger you.
One very overwhelming thing is that as with my suicide attempt at an attempt in 2013 what I’m going through now is so “not me” that not only do I have no ability to face it and put it in the context of myself, but others close to me can’t put it in the context of me that they have known. Even if they’ve only known me a couple months online.
Because this is so “not me” they like me r to deny it, to try to get me “back to who I was.”
This made things more confusing for me, and emotional because I quickly was getting that this stuff was not leaving, and that I absolutely could not control it. I could try. And certain things I could and can hide simply by withdrawing in whatever sense to have the energy to do it. To make my mind go into another place where the experience that’s so overwhelming that I might show this stuff because of, is no longer an issue.
Called generally dissociation. Which is a lot of it. I have a whole lot of dissociation. Way way more than I ever thought I would. And those who know me ever thought.
So I’ll just outline things.
Along with dissociation I have what I call “brain based” symptoms. Where my brain gets so overwhelmed for whatever reasons I still can’t grasp that processes that we take for granted get short circuited. For me this includes “trouble speaking. I either can’t untangle what I want to say from all the words in my head, though this is less now. A huge one is that the feelings in me, the scope and depth of fear in particular but also anger/ sadness, or pure happiness when someone does understand me, are so big I can’t adequately express them in words. I feel the natural urge to add physical expression to my words, in gesture. And I feel signing will and does already have a place here. The third thing is that the process of speaking itself is overwhelmed. Mostly slower, I kind of stutter and can’t pronounce things clearly.”
My body will freeze up, my legs in particular become stiff and hard to move. In the beginning I was constantly sore all over from all the tention. This could also affect arms and legs. Muscles contract randomly.
Along with talking I have trouble listening. Taking in the information taking it apart and then applying it to me. Again this was more an issue in the beginning. If someone asks a really broad question around a subject and I’m emotionally charged I can’t answer it right away. The multiple answers and feelings are just too much. And then there’s a point where it’s just plain difficult to organize my own thoughts even to myself.
Sensory stuff, again all this stuff was hugely overwhelming in the beginning and has slowly stabilized. And even writing about it now I can tell that some of this stuff is better than it was even a couple weeks ago. I think it’s because I had the amazing support of two very intuitive trauma survivor peers to guide me through at least some aspect of all these symptoms, to put them in a larger generalized trauma response while naming what they might be individually. So with that reference point to go on I could better develop at least a very general framework for what might work. Haven’t been able to test that and will say why in a minute but it’s some kinda starting point that I badly need to feel I have some kind of control and knowledge of this stuff.
Anyway sensory stuff either fe3els too distant/ numb, or too “on high.”
There for awhile I couldn’t wear headphones. The feeling of them on my ears was too overwhelming. The sound of anything being directed right in my ears was too much like how I did experience sound in the outside world. Which was like that I always had headphones on.
I touched something hot but that shouldn’t have been too hot and it left a pink mark. Sometimes someone would pat my arm and I barely felt it, other times it was like they’d reached under my clothes and under my skin.
Certain sounds really got to me and still deo. Music, generally. Unless it’s something well known to me usually voice and piano of someone’s voice recital. But even when I was listening to my recordings of stuff I’ve played for years some of it still sounded like greating on my last nerves.
Funny enough clapping is really harsh to me. The vaccume cleaner is another one. Whistling. Certain people’s voices. Definetely a lot of people talking at once.
So all of that as you can imagine directly affects everything at the most basic level.
Then you have the dissociation and what goes with it, which put simply affects memory and sense of time as well as sense of self.
So all this over a panic attack? I’m sure it doesn’t make sense to anyone else as it doesn’t to me. But the two amazing people who have walked alongside me for the past month and a half and other strangers on facebook say that it might.
No cognitive memories whatsoever, being assaulted by physical sensations and other symptoms that this is more common than you’d think.
There’s speculation, discussion of other disorders within the general pattern or even outside of it particularly with the brain based stuff around communication and sensing.
But I won’t go into that.
There is another trauma on top of this trauma though that’s very important. It is how Albany Care in general and Jonathan in particular responded.
Which is surprisingly as poorly as you can imagine. Though not at first.
At first Jonathan witnessed the panic attacks session. The following meeting which was on a Monday he witnessed the unfolding of the whole dissociation based stuff. And seemed fine with it. Actually has last words to me about it were “you let a lot out today.”
And I’ll always remember how pleased he sounded about it and how he said he wasn’t upset.
So then, of course this didn’t just all stop. I tried to keep it under the radar but it took more energy than I had to face the environment, and I just couldn’t. So all this stuff started coming and the next two weeks were extremely chaotic particularly with the dissociation but also the other things. Everything was just on super high. If everyone’s scale of experiencing stuff internally goes up to ten mine was probably twenty million. Or it felt like that at least, or zero LOL
So as is the case here caseworkers are coming and going like crazy. Jonathan had been on a downhill slide for a good several m months now anyway. And of course it effects morale of the staff and how things work on that level.
So it ended up that I saw my current caseworker who I only had for a couple weeks once and she witnessed the stuff.
Then it was new years eve. And weekend staff found out about all this stuff more intensely as someone was very anxious about it. They should have come to me first. But they didn’t. They took this person’s word, and twisted it to suet their clinical impressions and then jumped the gun and did a disaster of a hospitalization. Totally not warranted. I was not suicidal, self-harming, taking drugs drinking, manic anything. I was just experiencing a lot of very new intense stuff going on. And actually on that very day I was feeling some stability.
And I was supposed to see Jonathan in two days anyway.
Well absolutely none of that mattered and I was hospitalized. And paperwork wise it was a nightmare. Patel didn’t even know it happened they had nothing writt3en up in the books here. Every single professional I told about how I was quite stable and was honest about what was going on as best I could, turned my words against me. Totally did not even care they couldn’t understand even enough to say I did not need to be there since I said a million times I was no threat, and just made everything about me needing to be admitted. Found out later that the unit at St. Mary’s, was under quota for their patient numbers. No wonder they wanted me!
So I spent four days basically sleeping. No one talking to me about much of anything. Very dense psychiatrist put multiple personality on my record first then bipolar clearly he didn’t know and didn’t even speak to me.
My parents and I were quite upset because they called and called here with no response from anyone.
So I came back here besacially quite traumatized around the people who I had felt the most safe with for five years. That instead of being supportive like always they had totally used their power as professionals to make a decision that affected everything I did for the next week in spite of my reasoning with them begging and then getting quite understandably emotional. Nothing worked. It was like because I wasn’t acting like Sam I wasn’t Sam.
And of course the same happened with every professional I came across from here through being admitted through being in the unit. Anyone I tried to open up to even a little did not understand, would not admit they didn’t and used the information against me in some way.
I’ve known others who have experienced this to a much higher degree than me. While I tried to empathize it was overwhelming to hear about those who I considered mostly to be well intentioned if not always on target care providers, abusing so openly.
Well now I knew. And so with my senses on complete overload anyway it was made a million times worse by this. Every sound was magnified. For a good few weeks my first priority was getting through the day without alerting staff to me at all. At first Dayle, my by then caseworker seemed to be someone I could talk to. But like everyone else she was unsafe.
Through all this I still c considered Jonathan safe and was willing to forgive most everything, though would still need to burn off the high emotions. I knew that we would problem solve all this step by step.
And so I waited and waited and waited some more. Dayle said she’d contact him but I did not trust her. I kept trying. Then finally I got through.
Guys, it was like he never knew me. Completely was the exact opposite of anything remotely related to the person I’ve known for five years. He was extremely cold and detached and I would say I would not take the kind of demeanor he had from a stranger on the street without feeling threatened.
After I managed to get out that I was stable but struggling and we needed to meet he said quite coldly that he needed to refer me to someone because of the dissociation. That because of the dissociation at a basic level it appeared that I wasn’t myself. I could do several posts on that but he was basically saying he couldn’t handle it. Without even really trying. When even back then I knew the biggest issue wasn’t the dissociation. The dissociation was and is actually a good thing. I can consciously or notkind of emotionally and generally switch gears and like reset my brain sometimes, or enter very deep emotions but be able to emerge very quickly. Or just step outside things and get a wider perspective, or have parts of my brain rest awhile.
You get the point.
To me the one thing he can do well that I needed and need is help with retraining my brain and body either not to get stirred up to the point these huge floods of body sensations are hitting me, or how to let them cycle through when they’re happening. There’s a specific trauma therapy, somatic experiencing that directly deals with that I have been searching for a way to get that and I can’t. They’re not on Medicaid and I have absolutely no money to pay them. I will be seeing a therapist soon though.
Anyway one way to help with that is helping the person by physically contain their body, giving a hug holding them very intentionally in some way. He can do that with amazing sensitivity and gentleness. And actually there was one moment where he saw me shutting down and brought me through that releasing something, and then I could actually be calm because I let something out.
Many therapists just won’t do it. They don’t get it or don’t know how.
So that’s what I needed and something we’ve done forever.
While I didn’t have words for all that, I did try and say basically we don’t have to work on anything that’s too overwhelming for either of us. He basically just kept repeating quite coldly that he didn’t have the time, and he couldn’t work with this stuff I guess generally. He ended by saying he had another facility on the phone and maybe I should “process” what he said.
I processed all right! Now on top of this place, my home, in general being unsafe, one of the most safe people in my life relative to recently, now became honestly abusive to my mind-body at a deep level.
So even if I wanted to talk to him, even say goodbye I’m physically terrified of the man.
Jess tried to talk to him, he was just the same. We saw him in the loby and he stood across the hall and only spoke to Jess he did not speak to me and I was in a very overwhelming position where my body wasn’t sure if I’d shut down have a panic attack or go try to hug him.
So obviously this has become an unliveable situation for me. Anhd moving to Clayton House hasn’t come soon enough. But I was extremely terrified that they wouldn’t accept me because if here didn’t that says a lot. Well they did officially. And they have been very open to my endless anxious e-mails and questions around what I’m trying to face as my needs now. Which is taking e4verything I have. And which I never would have done4 had I not connected with these few peers who have experienced everything I am generally. And they’ve really walked with me in important ways. They were the only ones to objective evaluate things, try to name things and most importantly show me I could live through this stuff and adapt. In almost three months no professional has done anything around any of this. None. After the assault of hospitalization and shut down, it’s been pure neglect.
So I have had no support but peers. Including an amazing means everything to me person called Jess. We fought to estaqblish a new relationship and almost lost each other.
So I’m entering a whole new place in my life that I still want to deny is there. I want nothing more than to just wake up with the confidence, and clarity and readiness to transition where Clayton was really seen as only a step down towards living independently. Where now just living through the4 day is hard. It’s easier because I trust Jess but Jess is the only one who’s bothered to try connecting with me in person. No one else has really. So I’m trying to anticipate my needs when I really haven’t had a chance to figure them out in a safe relationship.
It can’t be worse than how I’ve been treated here. And people at Clayton do seem genuine. And I feel safe going to the therapist I am going to.
But I don’t think I can blog here anymore. I am so much a different person. It’s not like having moved from friedman to here and just picking up even though it was a huge change.
I’m not the person who started the blog, had the moves ETC. I’m someone totally new.
Not sure when I’ll be writing again.
Thank you for your support and input.