When people say “It won’t be as bad as you think“… I wonder if they ever imagine that it won’t be because it’s simply so much worse than anyone can imagine?
That tribunal was a nightmare. One that just would never seem to end. It has now… but it still haunts me, days later. I felt… molested. They tore into every part of me without emotion, care, or regard for my wellbeing. I felt presented to them so they could eye me, judge me, penetrate my very soul.
It was just horrible. Intolerable. It felt they tore inside my soul and ripped out everything inside. Everything I never wanted to think about again. Everything I had spent a long time trying to forget. Everything that I couldn’t think of again if I wanted to continue to survive.
They wanted to know things I didn’t want to remember, to think about, analyse… I’d already done that so many times in the past 20 months since this started, I did not want to do it again. I had no therapist to get through it, I had no therapist to return to. I had no one to help me the first time around, and no one there to help me deal with the memories. I felt like I had finally got to a place where I could forget the details and accept where I was (for now, until I get better). Now, they wanted to rip those scars open and have me bleed over their pristine giant table.
They dredged the dark waters and poured out all monsters back into my soul. Coldheartedly. Devoid of emotion. Without wanting my own to insult theirs.
They looked into every weakness, every symptom, every difficulty, every secret, every memory of every moment of pain. I was laid bare in every way in front of them. I felt I had been completely ripped apart and they were judging the pieces they had taken, like butchers looking at what quality meat they had ripped from a carcass. Except I wasn’t dead… but right then, I wished I was.
I tried not to cry. I couldn’t look up, or look at them. The tears kept wanting to come. I was tired. Frightened. Speaking and thinking of upsetting things. All I could feel was their eyes on me, their disapproval of such a thing. I tried not to cry. I think I managed it. But I think now I wish I had, then I probably wouldn’t have had a horrible meltdown later.
Having to think about every little detail whilst your fuzzy mind stumbles through memories better forgotten.
Having to think about every little detail that has traumatised your mind for 18 months. Every detail that you have tried hard to forget, so that horror no longer scars your life, your emotions or your mind.
I had a meltdown. It wasn’t until later in the day, until I was home. I just wasn’t able to deal with it all anymore – it all just kept going round and round in my mind.
Because of the meds? Because of my memory problems? Because I was beyond exhausted? Because I was so beyond anxious even before the day even came and now it was over the hill and past the horizon of awful? Because of the memories it dredged up with the minutiae of details? Because of my “condition”? (I still can’t really say the “A” word….)
My guess? All of them. And more.
It was like being somewhere that combines the head teacher’s office and Simon Cowell’s X-Factor panel. Only far more traumatising, humiliating, demeaning, and terrifying. I’ve done the Simon Cowell thing, I’ve done all the audition-panel things. I’ve sung solo in front of 1200 and alongside others in front of over 1500. This was nothing like that.
There was a room. It was so white it was horrible, so bright with sharp fluorescent lights it made me feel sick. It was a large room with a large table in the centre. On the other side were three quite old, stern-looking women. One was a judge, one was a doctor, and one was some kind of disability specialist. They were frightening in their imposing energy… I just felt myself wilt in fear in front of them. I kept my head down. I tried to speak to them, but… there are no words. I just couldn’t do it.
I had my friend but no advocate. No one to truly help me. I was alone.
They kept on asking me different questions, bouncing around with them, so I couldn’t keep my thoughts straight. I would try and answer, then forget the question, just think what I was thinking about and move off on a tangent. They kept asking me about distances I could walk over a year ago – how should I know? When you can’t even remember the last question posed before that, how is it possible to remember something from so long ago? They asked how far, distances in years, or miles, or meters, or even length of houses… I could never work out distances and now I don’t even have spacial awareness to the point that I couldn’t reference the length of 20 houses, or 100. I don’t even remember where places are anymore, and I always have to ask my friend which way we’re going and how to anywhere, because I no longer remember.
Inane question after inane question on historical facts kept coming. I couldn’t understand why now wasn’t relevant, and the judge mentioned that they could only take facts up to January 2015 because of the date of the last assessment. I was already in this state by then, so it was hardly any different to now, but it also meant trying to think back to a year ago and more. They wanted specifics… and I could only talk in disjointed vague memories better left forgotten. I honestly had no idea what I was saying or talking about.
The doctor even asked me that age-old gem that always really riles me up: “So, what do you think is wrong with you?” What I really thought was wrong with me was the NHS being an unhelpful butt-dragging arsehole. What I told her was that I didn’t know anything because no one cared to look, test, check… I didn’t know what was wrong with me, because no one had told me. I hate it when doctors do that – it’s their job to tell you what’s wrong. That’s why they’re there. To do that. I didn’t go to medical school, or work in clinics, or get an MD behind my name. Are they being lazy, or just intolerably insulting by expecting that everyone is aDr Google hypochondriac that thinks everything awful is wrong with them? I know it would be entirely unthinkable if I went around asking a simple database user what they thought was wrong with the system backend when they couldn’t do something on it… they’d look at me silly. What would they know about the coding, the access logs, the system details? No, I wouldn’t ask. I would just go and find out from the “symptoms” given as to what was wrong with the database. Damn doctors should do the same, too.
I tried my best to answer all their questions, but I’m certain my answers were as confused and chaotic as my mind felt. The light was almost suffocating and drowning me, these women were firing questions at me, expecting answers I didn’t know how to give them.
I clung to the little BagPuss beanie toy in my hand. My mother had given it to me a long time back, because it was my favourite show as a child. It comforted me, helped me. I squeezed him so tight, I’m surprised I didn’t somehow break it. It was a tiny plushie thing that was small enough to fit in my hand, and I hid it in my bag. I didn’t want them to see yet one more weakness.
I was already in such astronomical pain – I could barely keep myself together, let alone my mind. The anxiety, the painful and nauseating cab ride over, the physical exertion and extreme pain endured when I tried to use their bathroom, behind a horrible heavy, large door… it all added up to my state of mind before I even walking into that awful white room of bright lights and people.
I had no idea what to expect. I was confused and in pain. No one sat with me and explained what was going to happen or what was expected of me. I just went into that big white room and was faced with all this. It was unfair. If I was there to give myself a chance to explain myself, they set me up to fail. They may have “wheelchair access” but they were not by any means disability-friendly. They weren’t caring towards people with neurological or mental health conditions that would leave them scared and confused.
Maybe they just expect and assume that “someone else” will take care of these people… but who are they? I certainly couldn’t find anyone to help me go there who knew what they were doing. I have no therapist or social worker, care or case worker, or any other professional. Charities have limited people and too many applicants for such assistance because the NHS or care teams don’t provide them. I had no one. And that wasn’t really fair. It was also too late before I thought of the NAS, and that perhaps could help with finding an advocate… waiting lists are always far too long. If a similar thing is presented again, I will call, though.
I have been through it, yet (ironically?) I still have no idea what was actually expected of me. I told the truth, and that’s all anyone can do – but the confusion, inability to focus, incoherence, fear… it all goes towards how you communicate with them. I told them I couldn’t really communicate well with them. They were aware of it. What I don’t know if they take it into consideration when they think about the case. About my story. The story I can’t tell unless they read my writing, which they have not. Will not. Weren’t going to.
I don’t know what the outcome will be. I don’t know how long it’s going to take. I don’t even know if they understood me, believed me, got it right. My friend tried to help, but they didn’t really give her much of an opportunity to. They refused to let her help me speak. They forced me to do it on my own, and I know I got it wrong. My friend really tried to mop up a few of the mistakes I made that came across incorrectly, but there was only so much she could remember, since they asked me questions for some time.
I was confused and perturbed by the manner they spoke to me and the way they organised themselves, their questions, the procedure they used, by the fact they made me speak for myself without my friend helping me. They did nothing to help me make my case… in fact they made certain it was more difficult.
Now it’s been a few days since, I’m more angry with them for doing what they did, what they put me through, how truly badly they made me feel – penetrated, probed, torn up… a victim. They should have been there for the truth… their methods undoubtedly made me unable to tell it. To tell them much of anything that was of any use. If they had been calmer instead of stern, explained the entire process at all, helped me understand and be calm, didn’t make me feel rushed, had read my writing instead of ignoring it, asking me to read it when I was too scared to… Instead, I babbled, confused and frightened under the bright light in the big white room that was imposing and giving me a migraine and a panic attack, unable to really say not even half of what I wanted to or should have.
They had no idea how to get the truth out of me. They didn’t get lies, but they must have had unnecessary information instead of what they wanted from me. They quite possibly wasted my time and theirs because it didn’t go the way it should have. A little more care and attention into taking individuality into account, and their work would probably be much easier. A shame they don’t understand such things, and you’re nothing but a ticket or docket number to them.
I’m left daunted by it, and a little haunted. I don’t think either answer will really dilute the experience enough to forget it. It’s left its mark, and it shouldn’t be like that. The system should support everyone who truly needs it and squeeze out those who don’t. Right now, it’s the other way around. Those who are not ill and clear-headed and manipulative are able to con and convince the assessors and panel into believing them. Others, like me, can find it difficult to communicate properly for various reasons (not to mention that pain and exhaustion from illness doesn’t help in and of themselves) and not do a very good job of making our case.
Whatever the result, I did do my best. Unfortunately, it may not have been enough. But I did my best.