Round two–waiting for my tribunal–again

Keener’s continued story: Links to the first several chapters are here if you’ve missed them pick them up here: Part 1 and 2 here and part 3 here, and part 4 here, and part 5 here and part 6 here and part 7 here and part 8 here and 9 here and part 10 here.

After all the paperwork and induction was completed by the nurse checking me into the slammer, I completed my own set of administrative duties. First up was to phone Beener, to let her know I was banged up again. Of course she was already aware of this fact, and upon hearing my voice she asked me how I was. I replied “not very good actually, I have been sectioned again”. It was apparently in an extremely sarcastic manner, I was livid. I had fought with all my might to get out of the first clinic and only two days later I was incarcerated again. I just wanted to be left alone and for everyone to stop looking at me like that. Next up, I marched to the nurses station to confirm that my consultant was the same psychiatrist that I had seen a few years ago, who I had found to be most condescending and self-absorbed, resulting in me deciding to give up on any hope of useful guidance or advice from mental health services.  But here I was again, life on repeat.  I vehemently told the nurse that I wanted to request a change in consultant. I then barked that I wanted to request a Mental Health Review Tribunal.  She filled in the necessary forms and  the waiting game once again was set in motion.

Next, I explored the  layout and lie of the land in my new holding centre. I wandered toward the front door and stepped outside to have a smoke. I spoke to a nurse who was receiving nicotine therapy with some of my fellow detainees. I asked him where I was allowed to go, how far into the garden, another concrete themed affair. He looked at me bemused, maybe trying to suss out what my agenda was.  He didn’t get it that I just wanted to know where the invisible, but very tangible boundary lay – where my freedom stopped.

As before I did not believe that this was actually a mental health ward. The universe was giving me clear and unequivocal signs that I was right. Like the ‘patient’ who had a massive curly-wurly mop of hair, ridiculous hair style for a young guy who was trendily dressed. I was convinced that it was a wig, and I paced after him screaming and shouting in my mind “clown, clown, clown”. Letting ‘them’ know that they could not get one over on me. I became more and more sure that someone or something was ridiculing me and I felt that I was being punished for some reason unknown to me. Perhaps I was being punished for having been a mental health worker myself. Beener spent many a time reassuring me that it wasn’t actually a clown’s wig and that his hair cut was  actually in vogue. Hmm a likely tale and god how I wanted to give it a little yank! I managed to resist this temptation.

Now whilst this ward was an open ward and the staff did not have such a strong odor of violence and intimidation about them, it was evidently not going to be an easy task to get out of here unscathed. They were not going to let me hide and do my time peacefully, they wanted to talk to me, analyse me and categorise me. They were on a mission to get me to see that I was ill and diseased, that I was a life time member of the non-normal club and the sooner I started munching long term medication concoctions, the better. I, on the other hand, had quite a different perspective on my predicament. Thankfully the pack was leaderless so they were merely circling their target My consultant was on annual leave so diagnoses and long term treatment plans would have to wait. All decisions were on hold, pending the return of the all knowing Dr Wally, as he alone had the wisdom to determine my future. So, the assaults on my person, took a different form to that of my first incarceration, they were more of an attack on my understanding of myself and my life. They wanted to re-write my book, but I re-resisted and fought with all my might, I was the only author of this tale. You can have me – my body, but you cannot have my mind. I will NOT comply.

So time trundled along and I got into the way of life on the ward. The meal-times, where we queued like children at the trolley in the corridor, to sit at cramped tables with our heads down, elbow to elbow. I pushed my food around the plate, looking at the mush before with horror in my eyes. Rubbery, bland cheese and almost stale crackers were the highlight of the meal and the only thing that I could vaguely bear to eat at times. People would bargain and swop with one another, those luminous blocks of cheese were coveted items.  The weight was dropping off me and my fellow inmates would try and persuade me to eat, adding things to my plate and bringing me things that they knew I could stomach. Coaxing me gently, showing more skill and empathy than I ever witnessed in a staff member.

I spent a fair amount of time in the smoke room, where we chatted openly and honestly and soothingly with each other away from the beady analysing eyes of the staff –  the real therapy room of the ward. I met a great bunch of people in that stinky, dirty, dark smoke-room. When we laughed too much, a member of staff would burst in, fearing that someone was ‘out of control’, but we were just chatting and enjoying one another’s company. I learnt a lot from my friends about which staff should be avoided, who would help you, how to get out of hospital unscathed and how various medications made you feel. I looked around and saw how we had all been taking medication for years that could deaden our eyes at times and made us twitch and on and on. But most of all,  I saw how for many, the ‘system’ had stolen from them , cajoling them into losing hope, this is perhaps the most damaging part. I felt outraged.

I remained psychotic and manic, but with time the withdrawal symptoms from effexor diminished enough for me to clearly see, but more importantly to hold onto and understand that the effexor, or rather lack of, had left me in this predicament. It is hard to explain how at exactly the same time I could also think that I was on a spiritual journey and that I had to save the universe from destruction. I saw no contradiction between these beliefs and would flit between the two at the drop of a hat, with ease. The rational self and the fantasy self living peacefully together, working together for self preservation.  I knew it was effexor withdrawal for several reasons. Firstly it was my contention that people don’t become psychotic so quickly, I knew myself very well and did not believe that I would not have spotted something. My life was going well, up until two days before I had completely stopped taking the effexor, from 8mg to 0mg in one fell swoop. Secondly, I was physically unwell at the same time, I had an ongoing flu-like thing going on, I was bleeding constantly from down below and I could not eat – no appetite and everything tasted bland – yuck. My body and mind was battling to find an equilibrium, as it panicked at the loss of the drug. But most of all I knew it was effexor withdrawal because it was so bloody obvious.

When I was not socialising with others on the ward, I would pace the corridors or clean and rearrange my room for the umpteeneth time. I would have two or three baths a day, I found it to be a useful break from the boredom. I enjoyed putting several crystals in the bath and observing rituals that would help to cleanse me and keep me safe from the energy attacks that continued to plague me. Another patient, a woman in her 70s was the main culprit. One look or thought from her would cause an immediate drop of energy levels, I could feel her contempt for me and I would feel myself shake when I was under her gaze. I couldn’t stop looking at her as she walked to her room in her skin-tight bright green lycra suit and her heavily made up face. I could not work her out at all, so I coached myself into staying calm when I saw her, she was feeding on my fear. So I stayed clear of her as much as I could, seeing her as a very powerful threat indeed.

I had to meet with staff and doctors regularly. I am usually meek with people I don’t know, but the confidence or as my friends have pointed out arrogance, that came with the mania, was extremely useful. I managed to dominate and monopolise the conversation most of the time onto one of my favourite topics. Firstly, that I was in effexor withdrawal and every single one of the medications that I have been given make me feel awful. That I want to get away from the hospital, can I have more leave, when will I be discharged and so on. They urged me to cooperate – “get real” I would say “would you like to be in here and would you want to take medication that made you utterly awful”. The response was that “if I was ill I would be glad to have treatment and I would work with the staff to get well”. I got to know the ones that would nearly, but not quite, see my perspective, a regular phrase that would come up was “busman’s hoilday”. Whilst in a way this was true, what I really meant that being on the ward was boring and noisy and institutionalised for anyone. I felt it would be insane for anyone to feel comfortable here. Also, I did not want to be seen as one of the mental health professionals that had fallen under the stress of the job – because it was not true. However, they were well meaning and I went to them if I needed anything, blanking completely the ones that I had deemed  not safe to talk to. The chosen few did not look at me with utter contempt and scorn when I denied that I was mentally ill and they did not over-egg the pudding by looking at me with pity and talking to me like I was a child. You know, the ones who tried to mother you, who I could only look at in disbelief and scurry away whilst smiling at them whenever they attempted to make contact. Both parties patronising to one another.

Out of anger, necessity and for sport I would demand that staff do things for me – telling them that I know that I am perfectly within my rights to request theses things, quoting policy and guidance to them, shoving their own bloody leaflets under their noses and gesticulating at their seemingly decorative posters on the wall. “I want to make a private phone call”. They would direct me toward the pay phone on the wall, next to the entrance to the ward and opposite the nurses station. I told them point blank that the pay-phone did not fit the definition of a private phone call, that I wanted to discuss personal things and that I did not want people knowing my business. I had used that phone a couple of times when I arrived on the ward. One of those times I had an argument with my Dad about the tribunal that I had requested. He told me that he had to be honest and that he thought it was best that I stayed in hospital. I could not believe that my own father would see me locked up in here. I snapped and snarled at him, “You sound stressed, why the hell are you stressed, I’m the one who should be stressed, stuck  in here, you’re at home putting your feet up”.  I think I broke his heart that day.

So I began to be allowed the use of a phone in a private office and I waged a campaign to be granted leave from the hospital. I have since requested my medical records, another method of finding peace, understanding and closure on what went on. I was right to kick up the biggest stink that I could about these things, politely yet forcibly. The contents of my ‘private’ phone call were written up in my notes and skewed into being further evidence that I was diseased.  I remember seeing the nurse staring at me as I walked away from the call. She did not talk to me or ask me if I was alright, perhaps she had a lot of admin to do. I also saw that scrawled all over my notes in big letters, underlined is the statement “do not give leave until Dr Wally comes back from leave.” Tut, tut. Now that is certainly not good practice, decisions about care should be patient-centred, not based upon the bureaucratic needs of the ward. I am glad that I demanded over and over to see another consultant. In case you were wondering, yep you got it, he was a most tiresome chap too – a real smart ass, very slippery. Very keen to get me to see that medication was the route to salvation, but I danced around and between his words and questions. He gave me leave, knowing that I knew he had to, because there was no evidence to suggest any risks that would prevent me leaving the ward. At first I was escorted by a nurse who took me to the hospital canteen. Until my leave was increased to above an hour and I was allowed out escorted by friends or family, I didn’t always take it. Sitting in a canteen whilst being scrutinised by a member of staff, was not my idea of a good time. They  would always try and engage me in light conversation too, I was not interested, the whole scenario seemed ridiculous. Sure enough my periods of leave were increased, providing something to look forward to each day as the tribunal time came closer and closer.

I guess the biggest shock and feeling of being let down upon reading my notes, is that no-where does it mention effexor withdrawal. I went on and on and on about it in all the meetings, and on several occasions I asked for reassurance that my opinion was being recorded on notes, care plans and other documentation. I was told yes it is, but it wasn’t. I guess it was seen as another facet of my denial and hostility, whilst others seem irritated that I was trying to dictate the play. I begged them to see that I didn’t want to take medication long term because it made me feel so ill and horrible. With my Consultant away they had me on PRN medication – haliperidol, procyclidine, lorazepam and zopiclone, prescribed for as required and necessary, which meant either the nurses or myself could suggest that medication was necessary, but that I was not on a regular schedule.  I took some of the medication now and again, when I felt unable to cope with the weight of the withdrawal symptoms, when I simply felt I needed a break. I usually went for the lorazepam (a benzo) or the zopiclone (a sleeping tablet), they gave some relief, but would ultimately leave me feeling jittery, nervous, shaky and out of it. The nurses conversely, if they felt I was too agitated, would always go for the haliperidol (anti-psychotic) every time, which has  a real deadening punch to it – night night, sweet dreams within the hour. The time I wasn’t given the procyclidine with it, to control side the side effect, I vowed after that I would never agree to take haliperidol again. I was left stooped over, drooling and shuffling and shaking. I told them I’ll give that drug a miss if its all the same to you, thanks but no thanks. They went for olanzapine next, which brought a slightly different effect, but one which I also found to be completely unacceptable. I tried desperately to keep my head down, settling on nibbling on lorazepam when I felt unable to cope with my the effexor withdrawal. But constantly worried that I would get addicted to it. Super-confident that the effexor withdrawal symptoms would subside eventually and hoping that in the mean time I didn’t pick up another addiction that I would have to deal with. I was trying to be pragmatic, just wanting a rest from all this just for a little while, some peace.

They ultimately could have made me take their choice of meds by force, but it never came to that this time. So they continued to assess me and watch me, boring into my soul. Telling me how stressed I’d been leading up to my first admission and that this had pushed me into pychosis. To my friends, suggesting that I have had bi-polar for some time but have successfully hid it/managed it. I refused to let them rewrite my life for me, I felt under a constant regime of mind-control. They were asking me to disregard my own understanding of myself and my life, to abandon it and adopt theirs. I could not allow it, so I resisted, I refuse your template, keep that dam thing away from me.  Confused and weary of their attempts, along with the weeks of psychosis and mania,  I developed  mantras for myself, my favourite being “I might not know who I am, but I know who I am not”. I comforted myself with thoughts like these and the fluid nature of psychosis meant that at times I felt truly protected and at one with everything around me.

Everyone wanted me in hospital.  Friends and family, whilst they knew that it was effexor causing my woes, did not want to see me back at my dirty, ransacked, urine smelling house. They knew that I had no concern for my basic needs – food, sleep and keeping safe, and that I was listening to no one, urged on by uncharacteristic forces within. In the background, unbeknown to me they were all involved in trying to clear up and prepare my house for me – tidying, cleaning, redecorating and donating useful items like new carpet. I am truly, truly blessed.

It ended up with Beener taking the brunt of my off-loading of what was actually going on in my head, the strange beliefs that I held.  As I began to be allowed more and more leave she would come up nigh on every evening to take me for a drive or to take me to spend the evening at her house. Knowing how desperately I despised the hospital. She would drive me about, listening to me gabble on, never disagreeing but always asserting “fair enough if that is what you believe, but I don’t think that myself”. A calm, steadying and respectful approach.

So my days were spent biding my time, keeping my head down, looking forward to my time off the ward each day, Ultimately I was waiting for my tribunal, preparing. This time it seemed that I would be going into the tribunal without any friends or family to back me up. Beener apologised profusely, as she told me one day that she had told my solicitor that she was not sure if she would be able to 100% support my coming out of the hospital at the tribunal, if questioned. My lawyer had decided that it would therefore be best if she didn’t attend. My dad had decided not to come, as those were my wishes, and I had already taken steps to displace him as my ‘next of kin’, as defined by the Mental Health Act. My friends and family, I later found out, were being told by staff that “there’s no way she’ll win, not a second time” and my solicitor was having similar reservations. But she was a class act, she coached me on how to present myself and what argument we were trying to get across to the panel to get them to agree to take me off section. She continued to listen to my hopes and fears about getting out with both compassion and professionalism. She recognised that I was an intelligent human being, and allowed me the pleasure and right to feel hopeful. As ever the night before, I got very little sleep. As I waited for the tribunal to be convened I felt confused and scared about what the hell was going on. Another facet of the withdrawal symptoms was that I would have what I would describe as ‘episodes of dementia’, where nothing really made sense, even the simplest of things like understanding that the garment before me was a skirt and that you wear it. Thankfully, some kinda self-preservation kicked in as I entered the tribunal room and I was able to keenly focus on the task at hand.

The ward doctor was spoken to first. He described how it is reported that I am acting out of character and the team’s working hypothesis was that too quick a discharge would cause a relapse into heavy psychosis, I would be over-stimulated. They wanted to carry out a slow and managed discharged and to work on finding a suitable long term medication schedule. I was questioned about why I thought I was in hospital. I was asked to speak up, I apologised and told them I was nervous, I felt the weight of the occasion shrinking me into a tiny mouse. I told them about my problems with effexor withdrawal. The doctor on the panel then said that’s not what you told me when we met yesterday. Dam it (or words to that effect!) –  I’ve slipped up, I thought, oh well in for a penny in for a pound, so I took a punt on ‘honesty is the best possible’. I explained to him in a barely audible whisper “I told you what you wanted to hear”. He gently smiled and scribbled down on his paper. I got away with it, it seemed his ego could take it. The hospital doctor was then quizzed about effexor as a possible catalyst. I sat there listening, absolutely disgusted, he said that they had considered it briefly but it was only an extremely remote possibility, he quoted some statistic from somewhere or other. The basic point is  that they had discounted it from day one. Never mind the presenting symptoms or the view of the patient – for goodness sake where do they get these doctors from!!! Anyways, the discussions continued and I explained how the actual experience in the hospital was in my opinion, a significant contributory factor to the periods of depression and anger that I was currently feeling, I made no mention of psychotic thoughts. I listened, as my solicitor, spoke on my behalf, backing up my assertions with specific pieces of the legislation and policy. We were asked to leave, whilst they made their decision. We came back in, and I was once again dissociated, watching proceedings from outside of myself. I floated into the room. It was once again decided that I should no longer be compelled to stay in the hospital, I was set free. This was because, as with the first hospital, I was not currently overtly, displaying signs of a serious mental illness. Simple as that, game over. They agreed with me that being forced to stay in hospital was detrimental to my recovery, they were granting me self-determination.

Unfortunately, it was not that simple, that is for me to just run and for that to solve my problems.  I still had to face and deal with the reality that I was in  severe withdrawal from Effexor and that I was not coping with it too well, to say the least. This battle ultimately I could not win.

About Monica Cassani

Author/Editor Beyond Meds: Everything Matters