Lost and Found

Lost woman

 

I retreated into the woods and could not find a way out.

I was trapped in the perfect storm – extreme physical pain due to the giant fibroid currently still in residence sitting on nerves in my spinal cord and so large it has displaced other organs. It causes very heavy bleeding which then has an effect on my blood. Lack of magnesium has been defined as contributing to my increased level of epileptic seizures

I was already in mental pain due to having to accept I have failed to find work that I can do safely and the realisation that I have been way too willing to give 100% to others and receive at best 30% back in return.

I became scared to go out so I lost contact with people. I lost contact with myself. 

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Loss

The past year has been about so much loss. I lost my identity when I had to go back on Benefits due to my inability to find work where I was valued enough to be supported properly with suddenly finding myself having to deal with the most toxic people and unhealthy culture at the dizzy heights of the upper echelons of the NHS. I had already lost my identity once in my old career in International Development to which I was devoted. I was therefore no stranger to workplace bullying so it was all oddly familiar to me when I started to work in healthcare freelance. What I had not anticipated was the trauma this would dredge up. My principles yet again got in my way. I am wired to speak out about misconduct and as such, meet the consequences. But do I really want to be someone who remains silent in the face of the unacceptable? Of course I don’t. 

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I have been admitted to hospital so many times and at others been in hospital visiting my two friends. In my previous blog I talked in detail about the impact the death of ballerina Elaine McDonald, Prima of Scottish Ballet whom I saw dance in Edinburgh when I was 7. I found myself thrown into helping organise aspects of her funeral and in particular, trying to make sure her husband, my best friend Donald, was in a fit enough state to cope with it all.

He really was not in a fit state at all. I organised coffee and buns for the contingent coming down from Scotland and then I headed for Donald’s flat to ensure he was up and ready. I got him in a car which was no mean feat. He could hardly walk so a joint effort between myself and the driver finally got him in. He was in a complete fog, only barely aware of what was happening. I got him to the café to join everyone hoping it would bolster him. I met Elaine’s brother who had come from the US. He was Producer at Abbey Road and worked extensively with the Beatles. There were people from Scottish Ballet I knew from the 1980s – in fact the café was buzzing and absolutely packed.

When it was time to head for the Church just along the road, it became clear Donald could not walk. I sent someone over to Chelsea & Westminster Hospital to commandeer a wheelchair which they kindly supplied. I wheeled him into the Church. He then proceeded to lock himself in the toilet.

In the end I felt unable to mourn Elaine myself as I was in “carer” mode. I was also in such terrible pain from the fibroid. The funeral Mass was traditional but very beautiful. Elaine’s sister who had always been portrayed as the villain of the piece had done such a good job. At no point did I feel excluded. This all started me questioning the version of events I had been given over the years. Everything seemed to be turning upside down. I felt under immense pressure to keep going, which of course I did. I am used to functioning in extremis. it is however dangerous as all the trauma stores up to revisit me after the event, when I finally get to sit down and reflect.

We went to the cemetery. I was seated in a limo with Donald right behind the hearse. I did not feel any sense of exclusion. It seems the sister privately had started a rumour that I was the Other Woman, who had designs on the tenancy of Elaine’s flat. This was of course untrue. I respected the two of them and their volatile but long-standing relationship which endured despite the trauma of Elaine’s stroke and Donald losing his identity which was replaced by one of “Carer”.

I realise that death brings out the best and the worst in people, and families in particular. I chose to ignore the nonsense and conduct myself as well as I could.

From the funeral onwards, Donald’s downward spiral continued. It was truly painful to witness. His mental and physical health was in rapid decline. I was told by his brother-in-law that he kept passing out unconscious. By this time I had decided to try to back off from any further involvement by was persuaded to store items of Donald’s property in my flat. I had his duck collection of some 300 or so items, and large suitcases of clothes.

I had a call from Donald one night in distress. He was begging me to come round to his flat. I grabbed my keys and phone, got in a taxi and arrived to find Donald in a dire state. I sat up on his sofa for three days and nights just watching him disappear into the abyss using the same destructive methods I used to use to escape from my pain.

In the end, he walked into the living room in the middle of the night and passed out unconscious right in front of me. His breathing was disordered. It was very frightening. I called 999 and he was taken away by ambulance.

I found out that he was discharged only a few days later and it seems this was because the physical issues he had were being ignored as all the staff could see was extreme alcohol misuse. This was another case of the Diagnostic Overshadowing with which I am painfully familiar. He was on a downward spiral. I could not stop him no matter how hard I tried even to the extent of being dragged down with him.

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At this time my own health was getting worse. The fibroid causes heavy bleeding which in turn affects my blood and that (and overwhelming stress and sleep deprivation) led me to having frequent grand mal seizures. I kept coming round in ambulances after having a fit in the street. I would lose my memory and be doubly incontinent. And all the time the pain was more and more excruciating. Taking my own life started to seem like the only option for me to escape from it all.

As usual although clearly acutely unwell, I was rapidly discharged from A&E as soon as I was vaguely coherent & able to stand more or less upright. Of course I ended up back in again. Nothing was ever resolved fully. I was very close to taking my own life so I tried again to get help. I rang the Mental Health Trust Crisis Line as I did not want to be dumped in A&E again only to be discharged in the middle of the night. They insisted on calling an ambulance so there I was again.

I spent a night in a packed A&E. My fibroid-related pain was even worse due to being on a trolley and had not been seen by anyone so I could request pain relief. I was in a holding centre basically, somewhere to fester unnoticed while over-stretched staff did their best to cope. I was on suicide watch and those nurses really helped. They made me tea. They cared. They SAW me. It was agreed I would be stabilised physically then packed off to a MH ward. That sounded fine. I just wanted it all to stop.

Make it stop

I was on that trolley all night and most of the next day. I was in unspeakable agony. I had also started missing my meds as they had not prescribed anything. I remained there for the rest of the following day. Finally, the delightful psych liaison nurse to whom I owe SUCH a lot, came to give me the good news…a bed had been found. The bad news was, it was in Milton Keynes. Initially I laughed as I thought it was a joke. Sadly, it was not. After a totally sleepless night, in extreme pain, I was then to endure a two-hour car journey to Milton Keynes.

I was seen by a very nice doctor but still no pain relief – mot even a single paracetamol. He also said I was way too physically unwell to be admitted to the Mental Health Unit so I was transferred to Milton Keynes general hospital next door. I ended up in A&E where I spent a further sleepless night sitting on a plastic chair. The pain was so immense that I really could not take any more.  Eventually I was moved to a bed then transferred to another bed. After all that, I had a few days being given the help with my physical state that I should have been given in Chelsea and Westminster. I started to feel gradually a bit more human. I felt grubby, had no toiletries, was bleeding heavily and had nothing to change into.

I felt like I was crumbling. I was isolated, desperately lonely and as soiled on the outside as I felt inside. I wanted it to be over by whatever means. 

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I was still on suicide watch and one of the nurses went above and beyond the call of duty to bring me clothes from her home and toiletries. She was GREAT. We ended up singing Country & Western songs together. I will forever be grateful to her. On the other hand though, three members of staff meant to have me under “close observation” used the opportunity to have a good long sleep including a lot of snoring. Had I been minded to harm myself I could have easily. It served to illustrate the lack of consistency in standards. I was spotting cracks in the system to avoid looking at the widening cracks in me.

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Eventually, I was transferred to the Campbell mental health unit. It was a very challenging environment as I was so exhausted. It was noisy, constant blaring of “music”, & very unwell patients making the place feel very unsafe.

It felt like staff were only just coping and naturally, errors were being made. There were so many meds errors happening with myself and others, I lost count. I missed the meds that help control the bleeding. They failed to order enough so inevitable the bleeding got so much worse leading to more tiredness due to anaemia.

It was of course, not all bad. The consultant was excellent and changed my medication to something I have found really helpful. He was clear, highly competent and above all, he was kind. I felt seen and I felt heard.

I tried not to, but I ended up sorting stuff. I got the water dispenser fixed and the ward now has pyjamas in the linen cupboard. Kingsley had no idea that there weren’t any hence patients, particularly those like me shipped in from other areas, were having to sleep in outdoor clothes. Was this a distraction from pain? Of course it was but at least something positive happened as a result 

I went to a group on healthy eating to show willing. It was then I received a text. It was Donald’s brother-in-law. Donald had passed out in his flat and was found by one of his carers. He was bleeding.

Donald died in hospital. 

Shocked woman

The list of things which contributed to neglect screamed to me self-neglect, self-destruction and heartbreak.

I was numb. I felt shame that I had not been with him, that I had not pushed harder to get him the help he needed. In truth, however, he just could not live without Elaine. And if he was no longer her “carer” who on earth was he? Watching him deteriorate, having him cry on my shoulder, feeling utterly helpless was one of the most painful things I have ever been through.

Then something started to change. I felt the urge to take my own life dissipate like dark clouds starting to clear. It was no bad thing that I was in exile in Milton Keynes as I could not distract myself by taking over organisation of all connected with Donald’s death. I had to sit with my thoughts. I went to the Chaplaincy in the main hospital. By chance the Chaplain was there and he talked to me and gave me a beautiful prayer. I do not associate with any particular denomination, but at that time, I needed help to make sense of what had happened. It was very helpful.

clouds parting

I made a decision that I would start to show myself even a fraction of the care I give to others. I chose life at that moment. I did not want to put my family and friends through the sort of pain I felt at losing my best friend to the consequences of self-destruction which I know all too well. I had an image in my mind of a closing scene of The Piano. Ada deliberately gets her foot caught in rope which was attached to her piano. The piano goes overboard. She allows herself to be dragged under the water. Then it happens. She chooses to live. She kicks her foot free of the rope and floats upwards towards the light. 

 

Since then, I have felt much lighter. I still can’t quite believe Donald is gone. It was my birthday recently and it reminded me of all the birthdays I spent with Donald and when she was well enough, with Elaine. We would go to the river and feed the ducks. Donald would buy me stuff from the deli on the corner. I would go home armed with Buffalo Mozzarella, Italian bread and vine tomatoes.

Of course I miss him, I miss them both. There is the strange sensation that a huge chunk of my life has simply been erased. Even their lovely cat Big Boy had to be put to sleep as he was emaciated through neglect. I called the RSPCA. I sat cuddling him, gave him treats and he purred like a pneumatic drill.

 

 

Despite, or maybe because of, all of this, I have started to see light somewhere in the mist. Healing is a long process. Maybe I see there is something left of the person who had worth and that only by respecting that part of me will I come out of the mist completely.

I believe that I would not now be here were it not for the friends I have made through Twitter, my blog and the smattering of friends who have not abandoned me. I am still not great at the In Real Life stuff but maybe someday….I intend to give it a try.

I choose life. 

 

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Hidden truths, unspoken lies.

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Last week the report into the needless deaths at Gosport Memorial Hospital was published. It revealed that at least 450 lives of patients admitted to this hospital were shortened ie in Plain English, people died, due to inappropriate prescribing of heavy-duty opiates. In a hard-hitting foreword to the report, the Chair of the Independent Inquiry the Rt Reverend James Jones uses terms sadly very familiar to harmed patients and families, and to those of us deemed “whistleblowers”, “troublemakers” and “vexatious complainers”. These include “obfuscation”, “closing of ranks”, “betrayal”, “powerless”, “anger”, and “frustration”. I have not experienced direct harm in the same way as these families, but being of the “speak truth to power” type, I am painfully aware of these terms.

What has come out has left me with a deeply unsettling feeling of deja vu and an equally intense foreboding for the future.

I have a reputation for a clearly reckless tendency to say when the Emperor is in a state of undress, and have not hesitated to do so in my sometimes life-draining experience of working as an “outsider inside”.  I have done so for years within the NHS and other healthcare organisations such as the Kings Fund who, despite being nominally “independent”, in fact tend to mirror exactly the culture about which they claim to be “thinktanking”. Perhaps therefore it is no surprise that I am burnt out, worn out and only starting to emerge over the side of the rusty skip onto which I have been chucked.

It came as something of a surprise therefore to be approached by two radio stations for my views on Gosport. I did not relish this and had to give some thought as to whether to agree. In the end, I decided that those of us who feel able to speak out, must use every opportunity to get our points across. As I am not directly affected by the outrage at Gosport, it is not easy to dismiss me as “angry brigade” which is what I know happened to the families raising concerns. I have seen this happen time and time again. People are unheard. People’s anger and frustration builds up, becomes embedded and in the absence of an outlet, can boil over leaving the person unable to trust anyone in authority at all. This plays right into the hands of those in the system as it becomes much easier to negate and shove in the “difficult patient/carer” box. And so the merry-go-round spins on…

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And so I found myself being interviewed by Radio Scotland and by Julia Hartley-Brewer on Talk Radio with which I had not been familiar. Julia HB was all too familiar. It was going to be a challenge,  as our views on most things are at polar opposites.

I think I managed to get over my views but we were of course limited by time constraints so I decided it merited a blog. This is a complex issue that goes back decades and is about deeply ingrained cultural norms, attitudes and group-think. I will attempt to unravel my spaghetti-headed thoughts on the whole thing:

I am shocked at the scale of what the inquiry unearthed but sadly, not surprised. Both through being a long-term patient, and until I became ill again with work-related stress, a consultant to healthcare organisations, I have gained a wide perspective of the culture of the NHS. Despite the rhetoric, it remains a very defensive culture and I believe this defensiveness is due in no small part, to fear.

People genuinely are afraid to speak out and they are right to be, as those who blow the whistle often face dire consequences. Also in a target-driven, highly pressured culture where there is significant bullying in places, it has been demonstrated that even the most compassionate people get cut off from their own values. Mid Staffs was a case in point. Families who have experienced avoidable harm, in my experience, do not want revenge or massive lawsuits and compensation, they want accountability and the assurance that this will not happen to any other family in future. These families are a source of real insight into what needs to change and can be a huge part of the solution if allowed to be. Trouble is, they tend to be seen as a threat and stonewalled. This fundamentally has to change.

I have over the years experienced excellent care delivered by dedicated staff often doing so under extremely difficult circumstances. I do not wish to be seen as attacking the NHS. In fact I am devoted to the principles on which the NHS is founded. It “belongs to the people”. National NHS organisations hold it, ostensibly, in trust for us, the citizens. It is essential therefore that they hear us and work with us, and that means when things are going well, and crucially, when they are not.

It is the latter part of this that causes problems of course.

The culture of defensiveness – the taking to the bunkers in times of crisis, the unwillingness to “wash dirty linen” in public – goes back way before even the twenty years since concerns started to be expressed regarding Gosport.

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In 1959, psychoanalyst Isabel Menzies-Lyth published a study of systems in hospitals describing the culture there as a defence mechanism against the anxieties raised by caring for people in life and death situations. The study looked at the behaviour of nurses on a highly pressurised teaching ward. There is much in this study of relevance to the debate still ongoing about NHS culture. Menzies-Lyth found that:

1. Efforts were made to create a distance between nurses and the patients. Instead of nurses concentrating on one or two patients they were required to do different tasks for different patients. This ensured that close relationships could not form and kept patients at a “safe” distance.

2. There was a tendency to depersonalise, categorise, and deny the existence of the patient as an individual. Beds would be made in the same way, and patients fed at the same time. Hospitals were highly controlled and regulated which offered real opportunities to hide behind procedures when faced with intensely emotional situations.

3. Staff often denied their own emotions. A “good nurse” was seen as a nurse who would not get too attached to a patient. Physical detachment achieved by the regular movement of nurses from one ward to another supported this psychological detachment.

4. Procedures and rituals were used to minimise the need to make decisions deemed too stressful and which had the potential to generate fear due to uncertainty.

5. Responsibility and accountability was deflected

6. There was a level of “purposeful obscurity” where it was not clear who was responsible or accountable for what and to whom. This enabled responsibility to be applied in general terms rather than directed at one individual.

8. Staff avoided the impact of responsibility by delegation to superiors. “Tasks,” she “were frequently forced upwards in the hierarchy so that all responsibility for their performance could be disclaimed.” Nurses tended to carry out mostly tasks well below their individual capabilities.

9.  There was a tendency to avoid change. “Change,” she wrote, “is an excursion into the unknown.” Terrible consequences might follow. It was easier to hide behind “we’ve always done it this way”.

One quote from this work which resonates today given the experiences of the late Dr Kate Granger when she became a patient leading to the #HelloMyNameIs  campaign is:

“By allowing for ritual task performance by depersonalising relations with the patients, by using organisational hierarchies, nurses contain their anxiety. Thus a patient becomes “the kidney in bed 14” or “the tracheotomy in ward B”. In this way, nurses limit the anxiety they would experience if each patient were to be dealt with as a full human being in need.”

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This report happens to be about nursing staff. I do not wish this to seem like an attack on nurses in particular. In fact in Gosport some nurses did try to alert management as to what was going on and got nowhere. However, others have acknowledged that they turned a blind eye and one is on record as saying she had no idea why she had done so. In truth, the tendencies referred to in the Menzies-Lyth study apply to any professional group working in an under-resourced, over-pressurised hierarchy particularly one subject to constant “reform”. It is little wonder that the constantly shifting sands contributed to the culture of fear which then manifested in the sort of behaviour observed by Menzies-Lyth.

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I should know.

My career before diagnosis with PTSD was in exactly such an environment. I did not work in the NHS but in a local authority. We were subjected to constant restructuring, having to apply for our own jobs, and to interference by elected politicians who created conflict as what they demanded was often not the same as what the management required. This rather chaotic environment created fertile soil for the growth of petty dictators who were lauded for “getting things done” in the sense that Mussolini got trains running on time. The impact on the human beings who were being placed under intolerable pressure to meet the targets imposed from above was glossed over. Our Chief Executive was a bully with deep insecurities particularly around those of us he deemed “intellectual” or “academic”. He had good reason for his paranoia. He was exposed (by myself and a colleague as it so happened) for having falsified all of his qualifications. That came after our trade union had exposed him as a bully and chief perpetrator of an organisation-wide culture of fear. He was not sacked. He knew where bodies were buried.

I too put up with a lot of it and indeed did turn a blind eye to unacceptable things like Councillors fiddling expenses, as I was absolutely devoted to the people in the communities overseas with whom I worked. My doctor kept begging me to leave for the sake of my physical and mental health. I could not countenance that as I believed I WAS my job. Without that identity, I simply did not exist. So I carried on. It was a disaster waiting to happen. My colleagues were killed in Belarus in a rather scandalous episode the circumstances of which I was expected to cover up. I could not do that with something of this level. I took to alcohol to create the level of dissociation required to keep going. I see this a lot in the NHS. NHS staff are well-represented in the AA meetings which I now attend.

One day, I was sitting in a management meeting. I was asked a question about one of the communities with which I was working, as I recall, in Zimbabwe. I realised that at that moment, I had NO opinion. I had become frozen. I did not care one way or the other. I knew then that something profoundly wrong had happened to my personality. I knew deep down that I cared deeply but I had become completely distanced from my own humanity. I packed up my desk that day and did not go back.

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When I first heard about Mid Staffs I was horrified of course. I asked myself how on earth could staff become so detached from the values that made them go into healthcare, that they would walk past clear instances of neglect and abuse.

It was extremely uncomfortable to reflect later on, that in fact, I had gone through the same process myself. And if it could happen to me, it could happen to anyone.

This is not to say that staff should not be accountable. Absolutely they must. However, we need to look at those at the top who are NOT on the front line, not subject to the consequences of their own management styles, and ultimately, paid enough to shoulder accountability. The problem is that the upper echelons of the NHS contain more than their fair share of narcissists who lack insight, empathy, and have become so detached, so convinced of their own importance, that they profoundly will not believe this song is about them, to quote Carly Simon.

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There are good people at those levels too who have generally survived through being in that grey area of being neither too openly good, nor openly bad. Despite the sound-bites to the contrary which emanate from the Transformista Cult, they do not rock boats, and they do not draw too much attention to themselves either good or bad. They have drifted upwards, unfettered by too much scandal, or too much success. They KNOW very often that the unacceptable is going on, but seem unwilling or unable to do anything about it. There were some very good people from the upper ranks of the NHS on the Expert Advisory Group who endeavoured to advise Jeremy Hunt on the design of the new Healthcare Safety Investigation Branch. I was a member. I received more than one message from these highly-paid individuals saying that I was the only one with the guts to express openly what they were all thinking. It reminded me of when I spoke out about the bullying in my old organisation along with a few other courageous/foolhardy types. The majority of people told us they were fully “behind us”. What they meant was a considerable way behind us, behind a wall made of bomb-proof concrete.

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I was asked on Radio Scotland what I believe the solution is…not an easy ask in a ten minute interview.

Firstly, I am NOT an expert. I am an observer. The outsider/inside role with a range of healthcare organisations has however, given me a genuine “helicopter view” of the current landscape. I have given up on trying to change the mindsets of the narcissists  at the top which is a waste of effort, or inject courage somehow into the veins of the good people at the top so that they start to risk saying it like it is.

I prefer to concentrate on the leaders of the future. I am given some hope when I meet with the new intakes of the NHS Graduate Scheme every year on their first day. They are very bright, their minds are open to new ideas, and they have not (yet) been got at. I like to think I am able to plant some seeds that in some maybe, just maybe, that will enable them to grow into leaders with integrity and the courage to speak truth to power, leaders who are not afraid to torpedo the boat if necessary rather than just conference-hop loudly proclaiming their radical “boat rocking” credentials but not doing anything that might disrupt the status quo.

A few years ago I worked with my first intake of Graduate Scheme trainees. I had yet to be aware that I seemed to be able to influence through the manner in which I shared my experiences as a patient. There was a very overwhelming response to what I said from the new trainees. Some came up to tell me what had motivated them to want to work in NHS management, some became tearful as they had only just realised the enormity of what they were doing and the potential to impact on the lives of ordinary people.

One trainee sent me an email during her first placement. She on her first ever night shift in A&E. She wrote:

“I just want you to know that I am remembering what you said in every patient that I see”.

This is why I choose to lay my painful experiences bare over and over again in the hope that in some small way I can make a difference. I must believe that it will. It is what makes me drag myself off the floor and somehow carry on.

The other key part of any solution will of course be a radical change in the way patients and families are perceived in the system. We are NOT the enemy. We are more than capable of understanding the reasons for errors, that human beings are fallible, and that staff are very often burnt out and drained. The tendency to retreat to the bunkers as soon as the shit heads towards the fan is doing NO-ONE any favours. I am painfully familiar now with the shut-down that happens when a failure or short-coming is exposed. Despite the fact that we would deeply respect professionals prepared to say “I got this wrong” and look at how to work different, very often the response is to batten down the hatches and we are met with a Berlin Wall of silence.

No wonder then, in a system so divided and divisive, we can be forced into Them and Us tribes.  Instead we need to be able to meet in the no-mans-land between the opposing armies as genuine partners, each with a deep understanding of what it is to walk in the shoes of the other.  This means that we must be present where the real power lies, at governance levels. We should not be limited to token patient story at the start of a board meeting, but as an equal member of the board itself.

Until this happens, we will continue to repeat the same mistakes. The NHS can’t afford this and neither can the citizens – the patients and families who stand to lose a great deal if, and indeed when, another Mid Staffs, another Southern Health, another Morecambe Bay, another Gosport hits the front pages.

Are you an NHS Leader hiding until it’s all over, or do you have the guts to free yourself and your subordinates from the merry-go-round?

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Why?

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“We don’t deal with people, we deal with bricks and mortar” Housing Officer, the Royal Borough of Kensington and Chelsea

I will never forget those words. They were uttered at an event in North West London which aimed to get the various services utilised by people with mental health problems, to work together. The Housing Officer’s comment is now given extra significance by the fact that only a few years after it was said, the preventable deaths at Grenfell happened on her patch.

I write the week after the first anniversary of this outrage (I can’t use the word tragedy), and am recovering from the effects on my crumbling frame of walking silently and marching noisily with those affected – families of the dead, survivors, local residents, firefighters, mental health professionals, and others who, like me, care deeply.

I have been reflecting on why I involve myself every month in the Silent Walk and attend as many events as I can. The reasons are complex and intensely personal. I hope to unravel some of this in this blog. It would seem to be a mixture of empathy and fuelled partly by anger.

Empathy

I have lived with the effects of extreme trauma most of my life but particularly after an incident in Belarus spun out of control and led to the death of my Manager and colleague. I have written about this in other blogs in detail. I was dispatched to “sort things” by my employer Aberdeen City Council whose primary objective was to avoid political fallout. There politicians were behaving extremely badly that day and this reckless behaviour led to unnecessary deaths. I entered a gothic horror mortuary to identify remains believing firmly in the narrative I had been given about this “tragic accident”. As Victor Frankl said:

“Those who have a ‘why’ to live, can bear with almost any ‘how’.”

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I will never forget the day the Leader of the Council turned up at my flat late at night drunk and told me what had really happened, that the meaning that had kept me going through it all started to crumble. We had been lied to. I had been manipulated. Before she had even known they had died but were simply missing she had a superhuman, or rather inhuman, drive to protect her position. She found my dead manager’s camera, took out the film, brought it back to Aberdeen and had it developed in a private lab. She showed the pictures to me that night and I felt vomit rise up to the back of my throat.

Then of course, I started to struggle to keep the myth of what really happened going. I was already warned I had an “over developed sense of justice” so I had a need to tell the truth. They had a need to suppress the truth. Inevitably this was going to end in destruction. It led to PTSD.

Much of what helps people with trauma is “Management of Meaning”. Frankl knew this. I feel the trauma rising in me when I feel powerless. When I sat up watching online the horror of Grenfell unfold, I felt powerless. This in a nutshell is my WHY. It is WHY I turn up and do the monthly Silent Walk. This is WHY if I can, I shake the fire-fighters’ hands and thank them. I look into their eyes. I can see the trauma in those who were there that night. This is WHY the key, I believe, is collective action which unites the strengths of the community so they are not consigned to a box marked “victim”.

I became a victim. I bought into the messages I was given that I had no right to participate, no right to a say, no right to claim assets while dominated by deficits. It took a very long time for me to break the walls of the box down.

 

Anger

Grenfell and the response to it has consumed me with anger. Quite simply, I need to channel that anger in a positive direction or it turns in on me.

And anger is a major part of the grieving. I know what it is to be negated for having the gall to speak inconvenient truths to those in power. I know what it is to see blame being distributed to anyone and anything other than those who were actually responsible. At one stage, I was summoned to the Chief Executive and made to swear in front of a Justice of the Peace, that I had properly briefed the colleagues who died prior to going to Belarus on potential dangers. I still remember the exact words of my reply:

“May I remind you my job was to provide information on safety in Belarus, not to advise officers senior to myself how they should conduct themselves when abroad”.

It was inevitable that Survivor Guilt set in as I absorbed on some unconscious level, that I was somehow responsible. As I started to become unwell, the truth kept spilling out of me. At this stage, I had to be extinguished. And they very nearly managed it. However, if there is such a thing as “recovery” from something as extreme as this, it is not about “getting a job”, it is about finding my voice. These days I choose to be a voice rather than an echo.

Speakout

So much of this is familiar to me. Yet I am well aware I come to this with a degree of privilege. Despite my circumstances, I am certain the Royal Borough of Kensington and Chelsea agreed so readily to house me and then did so in the “posher” end of the Borough as I was still able to come across as one of their tribe – white, educated, middle class. The first property that came up was in North Kensington. I was informed I was allocated that property in error and soon was headed to Chelsea. There there was just as much anti-social behaviour but it was carried out by a public school educated son of a barrister who had relapsed on crack and set up a drug den in his flat right above me.

Assumptions, including my own, bother me. Some of the ignorance around Grenfell, the hate and bile belching from the Twitter accounts of some (usually anonymous) individuals, has really affected me. I have been trolled online in the vilest of ways as have many of the others who speak out in support of the Grenfell community.

“They were all illegals” “They were scroungers” “They all had foreign names” “Green was chosen as it’s the colour of Islam” “Why were these people allowed to live in Kensington in the first place?” “Why don’t they just get a job”.

Khadija

In fact, the people of Grenfell do not fit those stereotypes. Take for example the case of the super-talented Khadija Saye above.

I also compare this hate-filled narrative with the story of Bassem Choukair – a very popular and hard-working member of the great team at M&S in Earls Court Road. He died, his wife – a nursery teacher – died, her mother died, and their three beautiful daughters died. Bassem was so devoted to his team that he phoned from the tower at 2.30 am to leave a message for his manager that he would not be in to work that day and he was sorry for letting them down.

This, and countless other individual stories of the human beings who were incinerated in their own homes that night, just does not fit the picture the haters would have us believe.

Bassem

The book of condolence signed first by his colleagues then members of the Earls Court community and beyond gave a picture of a funny, friendly, dedicated family man. I know they miss him terribly.

Bassem2

Once again, the haters choose to ignore facts like these.

In essence, Grenfell just like Chernobyl in which I was involved, Piper Alpha, Hillsborough and so on brought out the worst in humanity, but also the best. When Chernobyl happened, people were kept in the dark and were out rehearsing for the annual May Day march. M’aidez. Save Our Souls. First they took the officials to safety. They even got the sheep out before the people. It was easier of course to keep the lid on information in those days. It is not so easy now.

I have been showing solidarity with the North Kensington community since the day of the fire. The Devil may well be in the detail, but so are the Angels. Here are some small examples of things I have heard or witnessed personally over the past year which restore my battered faith in humanity:

  • The rise of Leadership in a community that previously believed no-one would listen to them. This already started with the renewed confidence that started to develop when Emma Dent Coad was elected our MP. The winds of change had begun almost imperceptibly to blow. When people from the Grenfell community were finally admitted to give testimony in the first Council Meeting after the fire, I heard them speak with such eloquence, dignity and power. This was community leadership being revealed before our eyes. I have never seen Leadership as being about hierarchical power but something citizen-led that was familiar to Lao Tzu:

LaoTzyLeadership

  • The courage of all kinds of people who went towards the fire to try to help. I am thinking of the nurse at St Charles Hospital close by. He was up early for the Ramadan tradition of pre-dawn meal Suhur.  He ran towards the tower along with other Muslims and started to do what he could. He distributed water along with the group to which he belonged who are all from Sierra Leone. After that, he went to work and did a full shift on a ward on which I have been a patient many times. That group from Sierra Leone lost one of their number in the tower.
  • On one of the silent marches I noticed a small boy with his Mum. He was sticking a picture he had drawn of his best friend Mehdi who died in the fire, on a pillar which had personal messages written on it. I spoke to his Mum. She told me of the support he was getting at school, but that his older sister also lost her best friend. She was at that stage still too traumatised to come out of the house.
  • Members of the CNWL NHS Foundation Trust Grenfell Support Team told me how one of them was working with a small boy who had lost his father. A tattered item of his Dad’s clothing was found in the wreckage. That staff member made a blanket from the tatters for him to hold close.
  • The firefighters of Red Watch Paddington ran the London marathon in full kit. Some were still traumatised from having been first responders on the day of the fire. At the Justice4Grenfell march on the 18th I spoke to a number of firefighters who were either directly involved in the incident or who had been impacted upon particularly by the blame that was being dumped on them from a great height. Every Silent Walk I do, see the firefighters on parade and I feel in my gut the intensity of the emotions they are feeling.
  • On the day of the anniversary, I met a number of survivors. I met a friend of Bassem Choukair, who was wearing a T-shirt with a picture of the six members of the Choukair family who died that day, pushing another survivor from the 9th floor in his wheelchair. To me this signified a great deal.
  • The space under the Westway where the Wall of Truth is situated and from which you can see the Tower, has evolved into a meeting place and a sanctuary.  There is a library. There are sofas set out. There is a chess club. There are candles. There is art. There is a piano. There is always someone on hand to listen, to chat to, or simply to sit in silence. These were not provided by some Social Services team, but came from the community members themselves, the grass-roots from which something about hope, about strength, repair and yes, justice, has tentatively started to grow.

seedsofhope

Thursday was about grief, about mourning and commemoration. The crowd of an estimated twelve thousand people marched from the Wall of Truth, up Ladbroke Grove, past St Charles Square where I was once housed in a homeless hostel, to St Marks Park where there people of all faiths and none joined the Muslim community in Iftar – breaking the Ramadan fast.

The highly emotionally charged silence spoke in many ways louder than words. In contrast, we marched through Whitehall on the 17th of June to demand action. We chanted, we shouted, we demanded. Of course it gave us a channel for anger. But among the chants there were again those tiny shoots of hope. In one of the many impassioned speeches, I heard words which are music to my ears as they sum up my own motivation in life.

“It is time to stop doing ‘for’ and start doing ‘with'”

And my favourite chant resounding through the streets of Whitehall:

“What does Community look like?” “THIS is what community looks like”

Housing8

This Community has empowered itself and the genie is out of the bottle and once this has happened it is impossible to stuff it back down. The days of being at best passive recipients of the largesse of the privileged, at worst, the silent victims of their prejudices are over.

Provided they do not succumb to the divide and rule that so often those at the top of the hierarchy utilise but combine strengths, there is hope for the survivors and families of Grenfell and the local community.

 

 

RIP Bassem Choukair, Khadija Saye and the seventy others in whose name change will come.

 

 

 

The twilight zone. Part one.

Darkness5

                                                                                                                                          

Where am I? I know that is not my ceiling above me. Is it dark because it’s morning or late at night?

Who is this man next to me?                                                                  

I can’t take the onrush of fear. I need more alcohol.  I see he is unconscious and he seems to have only one leg. This should make it easier to escape.

I need more alcohol. The plan of action is first of all get some alcohol somehow. Then and only then can I quell the shakes in order to move to the next stage. 

I accomplished the first stage via a three-quarter full bottle of vodka located in the corner on the bedroom. There was a stench of stale urine, poverty and desperation. As I finally get myself out of the front door, I hear him shouting what sounds like a military ID. He must have been a soldier….. 

Any one of these episodes should have counted as a “rock bottom” by anyone’s standards. Some of us however, stay at rock bottom for an extended period, bumping along the seabed occasionally trying to gasp for air. The problem was I fundamentally believed I deserved this half-life I had created. I never felt good enough and running through my head on repeat was a litany of “if I can’t be good enough, I will be SO bad, I will be off the scale altogether.

I was now fully adrift and under the radar from support in London. At this stage alcohol in some senses saved my life. I only survived,I believe, by having an artificial cushion between myself and reality. I am convinced had the enormity of my current reality, that I was truly alone and spiralling out of control, in a dangerous, dark underworld sunk in,  then I would have taken my life.

Darkness2

The details are for obvious reasons and rather thankfully, somewhat hazy. If I try now to delve into what was going through my mind during this period, I only have a sense of desperation to ensure that as little as possible of my reality actually entered my consciousness. For that, I needed industrial quantities of alcohol. If I couldn’t find enough through the other Twilight Zone dwellers, I would steal it. I certainly found a whole skill set I never knew I had. I could still manage to put on a façade of sorts. If I got caught, they always let me off as a hormonal middle class lady. I didn’t fit the stereotype. I remember one of the street dwellers saying “here I am looking like scum, and you still manage to look like a millionaire’s daughter”. He was called Jim. He played the guitar. He’s dead now. AS far as I am aware they all are.

They were not all bad. There was a mutual support going on in that group of Throwaway People. They could see I was not used to that world. I know a group of them tried to keep me safe. They even donated from their cash meant for gut rot cider to buy me a plate of French onion soup from the café in Holland Park. One of them had been a published historian. He had a breakdown after the death of his wife, lost his home and ended up on the streets. His former publisher would arrive every so often with food parcels. By this time, the poor man feared being housed more than anything else. He would not have been able to handle it, he said.

It was a very dark period. There is one period of several months of which I remember nothing. I had been well enough to go for a Christmas lunch at a monastery with my then only friend, the poet and translator Vera Rich in whose landfill site of a home, I would take refuge from time to time. She drank like a fish too so the whole set up suited me. It was safe however and she never ever judged me. The next thing I knew I was coming round in a hospital ward. I was for the first time in my life completely psychotic. I remember it in detail. I felt euphoric.

Psychadelic

I was advising a crowd of medics and nurses looking at me aghast that I was immortal, that I was waiting for angels to take me back to my planet. I was getting messages from my planet transmitted through my very smart winter hat like a satellite dish of sorts. I was very worried that these unknown “enemies” were after me to kill me but as I was immortal this was ok. At this stage I could see the actually stationary medical equipment above me moving. I KNEW it was THEM. They were going to shoot me. It was time for me to be public-spirited:

“Could I ask you all to stand out-of-the-way?. I am about to be shot but as I am immortal that is ok. However you are NOT immortal so please stand aside as I don’t want your death on my conscience”.

I remember nothing more of that night. In the morning I was no longer psychotic. A consultant arrived and asked me if I remembered what I had been saying the night before. I assured him I could remember it all and had no idea at all where it had come from.

Soon it became clear where it had come from. I was in a lot of pain. On examination, they discovered I had stab wounds in my inner thighs and one wound which looks like an incision of my appendix. It isn’t. It’s a knife wound. The wounds were infected with MRSA and I had an extremely high temperature which had caused the delirium.

Two things really frightened me. One, that I had been stabbed and recalled nothing whatsoever about it and still don’t. The other was that I had caught sight of the date on a newspaper. It was over a month later than my last lucid memory. I had blanked out the end of December and all of January.

All I know is that when I searched my bag, I found a business card of an African pastor. He had written a note on the back saying that he had found me in Archway. I had no connection with Archway. He had called me an ambulance and got me to Whittington Hospital. This was only one of a number of real life angels who seemed to appear at the very moment I needed them most.

angel window

An additional part of the mystery is that there was no alcohol in my system. I believe I must have been preyed on while in a visibly vulnerable state and something beyond traumatic had been inflicted on me and culminated in my being stabbed. I believe my already deeply traumatised brain simply shut down and so nothing registered.

The only sensation I have is of being held somewhere against my will. Vera told me I phoned her. I said “I don’t know where I am, and I don’t know who these people are” before the line went dead. The truth is, I don’t want to know the details of what happened except that I am lucky to be alive.

Was this luck or evidence of a Higher Power? I am not sure. All I know is there were a number of occasions where I could so easily have lost my life. And yet I am still here. Many are not nearly so fortunate.

HP

Why do I do what I do? Why do I retraumatise myself by talking about these experiences in the hope that SOMETHING might be learned? This is why. I need to find a purpose for all of this. 

After an extended period of isolation in hospital, I was sent to a hospital in Ealing. Then a bed became available in South Kensington and Chelsea mental health unit. I had been approved for Housing in that Borough so was by this time in temporary housing from which I kept getting thrown out as I just could not cope independently at this stage. Temporary housing and hostels are not the safest of places and I was assaulted several times during this period.

When I was taken to Chelsea, I was deemed No Fixed Abode as I was between rooms in B&Bs or hostels. This meant I was admitted for an extended period to an acute ward until a plan could be put together to bring me some stability. I still did not stop drinking. I used to leave the ward to stock up on supplies which I smuggled into the ward very easily. The thing was I was officially in there for “PTSD” so as long as my drinking did not cause any Serious Untoward Incidents thereby causing a lot of paperwork, a blind eye was turned. There were a number of people labelled “alcohol dependent” on the ward who were monitored for alcohol use. They just used to visit me, as they knew I would have supplies. There were two AA meetings weekly in the main hospital and another in a church hall opposite the hospital. Did it ever occur to the staff that even one of us might have been helped there? No. I doubt they even knew that this free source of source was right on their doorstep.

However something was starting to change. I was now relatively safe. I say relatively, as a number of my fellow patients would get violent on a regular basis. I no longer required to drink to oblivion 24/7.

I was on a dormitory with five other women with a range of mental illnesses. In one of the moments of clarity I had started to experience, I decided that I had a choice. I could go under given where I now found myself, or I could learn from the experience. I chose the latter.

beacon

I was finding out new things about myself. I realised that I was not afraid of being around people with even the most distressing symptoms.

I seemed to be able to communicate with my dorm mates better than the staff at times. Opposite me was Gloria. Gloria had dementia. The only thing she said was a repeated request for help as she was convinced she had rabies. I used to go across to her and just chat. One day, she sat up and said as clearly as can be

“I’d like to go for a walk”.

I told her I’d have to ask the staff. I think they said something like “Gloria can’t even sit up”. However they said IF Gloria got up and dressed, by all means we could go for a walk. They clearly didn’t think this would happen.

Their faces as a smartly dressed Gloria and myself strolled past the Nurses’ Office arm in arm were a picture. We had a lovely stroll. She told me about her life. She had been a seamstress at the original John Lewis. We went down the Fulham Road and back up the Kings Road and back to the ward through the back gate. I was able to tell her son that his mother had come back to us for a time. He said he had not had such a gift in years. We were both in tears. She drifted off into her own world again but she seemed at peace. I knew she trusted me. The staff were mystified “how did you get her to do that?”. In fact they were no bothering to interact with Gloria. She needed human connection and so did I. We helped one another.

I started managing to laugh again. How could I fail to when we had “incidents” such as Jeremy taking all his clothes of at South Kensington station and strolling up Fulham Road singing “Mad Dogs and Englishmen” and very well too?

I was having to relearn things like having a wash in the morning and sleeping during the night like everyone else. I was aware that I had once had abilities, talents even, but had the sense that they were cryogenically suspended in another room to which I had not been given the key.

I was, without knowing it, in the very early stages of emerging from the darkness. There was a lot more darkness to come as the system there ostensibly to help me was ridden with gaps through which I fell many times.

At least however it was no longer pitch black round the clock.

I was still in the gutter, but just occasionally I had brief glimpses of the stars.

Gutter