A life with PTSD
Over the last couple of weeks, a number of events and conversations have inspired me to share the secrets of my PTSD. It’s something which I usually keep extremely private. Usually, the disclosure of my PTSD (post traumatic stress disorder) is limited to the explanation of ‘I don’t really do public transport’. Any further detail is spared, to protect both myself and the people around me.
Today I am letting my guard down. In part, because I was recently told off by my tearful sister for pushing her away; in part because I have noticed the silence of a friend, and I know what that means. Also, because another VERY brave friend of mine, explained his silence, his reclusiveness to the few people who share the only safe place he has left. It was one of the most courageous acts of bravery; he is a Veteran and has been through many acts of bravery, but his sharing his distance last week, was just as noble as any of the acts for which he has medals. I am humbled to share that safe space with him, and proud to stand by him in any way I can. His sharing taught me a lot about myself too.
PTSD is a very misunderstood injury. I say injury, because to me, that’s what it is – it’s an injury which can cause illness and disability. I once heard PTSD described as a mental injury and this was a lot more meaningful to me than the phrase ‘mental illness.’ PTSD is caused by a life threatening experience, it does not self-manifest without cause. However for each individual person with PTSD, the cause, and the symptoms are as unique and individual as the person and set of events which led to the PTSD. Added to the general stigma which surrounds ‘mental illness,’ this uniqueness of symptoms adds to the confusion and misunderstanding which surround PTSD.
In sharing a little about my PTSD I hope to raise a little awareness of what it can be like; because PTSD can be a very isolating experience, and this can make it much harder to deal with – as I say everyone is different, and I am not a doctor, but I hope by sharing my experience, others may be able to be a little more understanding and empathetic towards others with PTSD, or perhaps even recognise some symptoms in themselves. The isolation of the illness / injury often follows the isolation which comes from having experienced something most people could not ever imagine; and often, the sufferer would not want you to imagine what they have been through. Even if they share that experience with you because they trust you, chances are, they have kept the worst parts hidden well away from you, to protect you. We all carry a secret part of our story, and secrets can make you feel very alone. Some of us even manage to hide the secret from ourselves, until some event uncovers it, often with very traumatic results.
My PTSD was caused by me being injured in Tavistock Square on July 7th 2005. I was very lucky to escape serious injury; but I will try and explain the events which my psychologist believes contributed to me developing PTSD.
In the minutes before the bomb was detonated on the bus I was travelling in, I had become aware of the chaos caused by the previous 3 bombs being detonated on the tubes nearly an hour before. The tube network and Euston Rd had been closed, which led me to get on the number 30 bus, and for the bus to be diverted from its usual route. At first, I felt safe, my beliefs told me that London, and the UK were safe places. My beliefs told me things like ‘that wouldn’t happen to me.’ I wondered what the police thought was about to happen. I had no idea what had already happened by the time I boarded the bus.
What was on my mind was the fact I had never been to my planned destination before, so how would I know when the bus arrived in Islington? How would I know my stop? How late would I be for my meeting? I had planned to get the tube only one stop, which would have made my journey a lot easier. I started to pay attention to my surroundings, I needed to get my bearings, the air was filled with the sound of emergency vehicle sirens, the traffic was gridlocked, and police motorbikes and ambulances were trying to squeeze through the tiniest of gaps. I decided to strike up conversation with the lady sat next to me. I would ask her to tell me when I got to Islington, so I knew when to get off the bus.
I didn’t realise it at the time, but I was in a state which psychologists call ‘heightened awareness.’ Unlike the people on the tube an hour earlier, I was not immersed reading a book or a magazine; I was not listening to music on my headphones trying to detach myself from the people who surrounded me. I was acutely aware of everything going on around me; I was consciously trying to take it all in, and to make sense of it all, so I could reach my unfamiliar destination.
Then the couple behind us said they had been in Edgeware Rd. They had heard a bang. Someone said to them the bang could have been a bomb.
Suddenly, all the things around me started to make sense. It made me feel uncomfortable, very uncomfortable. I didn’t want the people around me to know it, but I felt stupid because I felt a bit scared. I looked around me again. I thought if there are bombs going off in London; an embassy would not be a good place to be next to. The building next to us had flags outside it. One of the flags was a European Union flag. I didn’t recognise the others. My sketchy geography of London told me the Embassies were all pretty close together. The park to the other side of the bus looked a bit like Grosvenor Square; I remember thinking I really didn’t want to be anywhere near the American Embassy right now. I looked over into the park, trying to work out who the statue in the centre was of. If it was Grosvenor square, it would be Roosevelt, I had been there before. I couldn’t work out who it was, so I looked back at the flag poles.
I have no memory of what happened next.
All I do remember is waking up, in the ‘brace’ position half slumped off my seat. Something was in my mouth; it was one of my front teeth – I spat it out. My shoes had come off; there was lots of glass under my bare feet. I couldn’t really see properly, my eyes seemed to be bouncing up and down, it was really hard to focus. I couldn’t remember where I was, I thought I had fainted. I couldn’t hear much either, but I did hear someone say the words ‘bomb’ and ‘bus.’ I felt terror like I had never felt before; it was overwhelming. But as I stood up, moments later I realised I could stand and I suddenly felt very calm. The rest of my memories on the bus are very surreal – I am told by my psychologist this is something called disassociation.
Disassociation is much more common in women than in men. I felt very numb for the next 4 months. People would ask how I felt, and I would say I didn’t know, I didn’t feel anything at all. It was only in going back to Tavistock Square, four months later that the numbness lifted and I cried. I didn’t cry for me; I cried for the people who died, and I cried for my family; as I finally realised they had very nearly had to bury their daughter, their sister; me.
Disassociation is more common in women than men for a reason. PTSD is the body, and minds way of protecting us from danger, and so is disassociation. PTSD affects a primal part of our brain, which says ‘I’ve been here before, it wasn’t good, and I’m going to protect you from what happened last time.’
In primal times, villages would be invaded, the men would have to fight to the death – to do so they had to remain mentally ‘switched on’ and hyper vigilant. The women however faced a different danger, that of rape and the possibility of raising a child as a result. Women’s minds are therefore more likely to disassociate in order that they would cope with the raising of that child, so that they can love the child that resulted from such a terrifying experience. As a result, women are still more likely to disassociate during a trauma as a coping mechanism, irrespective of what the severely traumatic event is.
A counsellor once described PTSD to me as a bit like a corrupt file or virus on a computer. Data which should go in the long term memory or hard drive, keeps circulating in the short term memory, where it keeps coming up when it’s not wanted or needed. Eventually, it starts to impact all the other programmes on the computer, so that they behave differently; sometimes shutting down completely. I think it’s a really good way of describing how PTSD can slowly start to affect the rest of your life.
For the next year or two I did my best to carry on as normal; and I thought I was doing a pretty good job. I worked long hours; my psychologist says I did this so I didn’t have to think about other stuff.
There were small signs things were a bit different though. I often jumped at unexpected noises and bangs; not a little jump, my feet would actually leave the ground or I would actually jump out of my seat. It felt like when my body released adrenalin, it just didn’t know how to stop, it was like a tap that could only do ‘off’ or ‘full’ with no in between. I thought it was because I was quite deaf, so did the people around me, and so my friends would use different methods to get my attention. My team at work stopped tapping me on the shoulder when I couldn’t hear them calling my name; instead they would approach me from the side, wiggling their fingers as they approached my field of vision. I look back now and think how caring and amazing they were to work that out.
I slept pretty well for the first year – probably because my body was recovering from the head injury, and the operation I needed to one of my ears. But after the first anniversary, I stopped sleeping. I still don’t have a normal sleeping pattern now, nearly eight years later, but I’m used to that. My psychologist says there are medical reasons why I can function normally on 4 – 6 hours’ sleep a night.
Around six months after the attacks, I started to say I would like to try and get back on public transport. Unfortunately, my friends and family with the best of intentions, would say ‘oh why would you want to do that’ ‘busses are horrible, don’t do it, you don’t need to, you have a car.’ All I wanted was for one of them to say, ‘ok, where would you like to go? I’ll come with you.’ But they didn’t. They wanted to protect me, and I’m sure they thought they were. As harsh as this will sound now though, they were victimising me. They were helping the terrorist who hurt me, get his way. He wanted to take my life away, or reduce the life I had left to a life of terror, a half-life. Sadly my friends and family did not realise they were helping him. They thought they were protecting me because they had not been able to protect me on July 7th. I can understand this, and so I can forgive them, but I wish more than anything, just one of them had the strength back then to say ‘ok I’ll come with you.’
In 2007 I planned to take the train to London for the first time on my own for a work meeting. Possibly trying to run before I could walk, but to those who know me, that probably does not come as a surprise. I was nervous about it, but I figured this was natural. The meeting was planned for Tuesday. I would be getting the 6am train, just as I had on July 7th.
On the Friday evening before hand, there was a train crash in Cumbria. That train crash changed everything. Suddenly I was overwhelmed with fear. That same feeling I had when I first woke up on the bus returned, but this time lasted all weekend, not just for a few fleeting moments. I tried to work out what I could do to make my journey safe. The train that crashed had been a new train, and the news speculated that’s why so many people survived. Maybe if I got on a new train, I would be safe? But what if it was an old one? I would die. Other people would die. An irrational part of my brain told me, that if I got on the train, other people would die; but if I didn’t get on the train, then it would be safe. If I got on the train, it would be my fault. I knew this made no sense. I tried to work out whether the middle of a carriage was safer than the ends of the carriage. Were the end carriages safer than the middle ones? I told myself if I died, the worst case scenario for me, was that I may be trapped for half an hour or so, dying before help reached me, medicated me, and I could slip away without much pain. It would be harder for my loved ones. If I was injured badly, I told myself I would cope. My experience would help me cope a second time. I did not expect to be so lucky again, second time round. I considered driving to London, a drive which takes around 7 hours each way. I knew most of these thoughts were completely illogical; but I couldn’t get any of it out of my mind. I spent the whole entire weekend in panic over it.
On the Monday morning, I called my employee assistance counsellor from work. We had stayed in touch since July 7th, and I was very lucky to have her, and to be able to have a chat with her if I ever needed it. I had felt I hadn’t needed counselling before then, but she had always made it clear the door would always be left open for me. I called her and said ‘will you talk me into getting on this train tomorrow’ I thought that’s all I needed. I did not call to say I may have PTSD, or that I needed counselling; the thought hadn’t crossed my mind. I thought all I needed was a pep talk from Cheryl and I would be able to get on the train. She listened to me, and then she said ‘no, I’m banning you from taking the train. Shall I call your boss, or would you like to?’
She explained her concerns for me, that I sounded different, that things seemed to have changed; and then suggested it was maybe time I thought about speaking to someone else, someone with much more experience in dealing with severe trauma. Luckily I had health care benefit, so she asked me to go to my GP, get a referral and a list of local psychologists which she would vet. She made it clear; she only wanted me to see someone with experience of severe trauma, as someone without the right experience, could potentially do more damage. I have passed this same advice to others I have met since. When the time comes, you need to work with someone with the right skills and experience; not someone who will look at you blankly with no comprehension of what you have been through, or what to say.
I was so lucky for many reasons. Lucky to survive in the first place; lucky to have someone looking out for the symptoms; lucky to get symptoms so early when people were mindful of them. Lucky to have private health care. Lucky to have a fantastic GP who could refer me – though he admitted that on the NHS I would have been lucky to have got an appointment with a mental health nurse.
This is why I am so passionate that awareness does need to be raised, and that a door to experienced help should always be left open for someone in my situation; no matter how much time has passed. This is why I am baring my soul right now. Any survivor of trauma deserves the help that I was ‘lucky’ to get. I hope in writing this, maybe someone will notice the change in their loved one, and will help them bang on the door to help. Doors which are often locked and boarded up to all but the most desperate cases.
I am lucky; I got help very early, at the very beginning of the onset of serious symptoms. I am also very lucky that my PTSD remains managed, most of the time. I am able to manipulate my life style to minimise those symptoms. If I had no car, however, I am mindful that I would very quickly become a recluse; my world would shrink to the distance I can reasonably cycle. My car is my greatest coping strategy. In my car, I am able to avoid most of the things which cause my PTSD to severely impact my life.
I TRY to take the local metro every few months. I only take a few stops, and it takes me a few days of ‘CBTing’ myself to prepare, and a few days to physically recover. I am unable to sit next to a stranger, and if someone comes to sit by me, I will get out of my seat and move to another part of the carriage. Mostly, I stand by the doors, close to the ‘emergency stop’ and ‘emergency door opening’ buttons. I only travel at times when I know the trains will be at least half empty. Rush hour is simply out of the question. I have to get my fare out of my purse and put it in my pocket before I leave the house, as it’s likely if I tried to do this at the station, I would drop my purse and its contents would spill around the ticket machine; or distracted, I would leave my purse somewhere stupid. I actually close my eyes when I step onto the train. I can’t bear anyone brushing past me, or touching me. You could say I have serious personal space issues when using public transport. My only comfort is my behaviour probably freaks out the other passengers as much as they freak me out. Sometimes, I hold my breath between stations. I count how many minutes from station to station. It takes four minutes to the first station. It feels like the longest four minutes of my life. I have only managed two underground stations; I haven’t been any further underground. The best way to describe the experience and symptom’s, is I feel like I’ve just climbed out of a car crash each time. Seriously, could you do that every day? And live a ‘normal’ life? I doubt it. I told my psychologist I wanted to get on a train reading a book, giggling with a friend or drinking coffee like normal people do. Like I used to do. He told me I would never board a train like that again, without thinking about it all. The name of this blog, is from a piece of art work at my local metro station ‘These histories travel with me’ I think it sums up my use of public transport, only it sounds far more romantic than the reality of how it feels.
I think most people imagine that ‘flashbacks’ are like hallucinations, and maybe for some they are, but mine aren’t. Perhaps because the image of the bus has been pushed by the media so much, I am almost desensitised to that image. For me, flashbacks are very emotional. A smell, or a sensation, or being in a certain place, make me feel like I am back on that bus again. I know I am not, my surroundings are not replaced by images of the bus; I know where I am, I just feel like I am on the bus, or like I have to be prepared for exactly the same events. My survivors guilt also makes me feel like if it does happen again, I will need to look after everyone else. I have been there before, I know the drill. The injured will be my responsibility; that will be the price of my survival. This second life I have, comes with a price. A price I feel it is my responsibility to pay. I do not resent paying that price, but it can be hard sometimes.
I am lucky I don’t feel the anger many with PTSD feel, maybe it’s because of the initial disassociation and numbness, maybe it’s because of the survivors guilt, or because of my peace work. I don’t know. As I have said, it’s a very unique condition which affects us all in very different ways. I am thankful I don’t have the rage and anger that some feel and struggle to control.
When I was first diagnosed I didn’t think I had survivors guilt, I told my psychologist I felt completely the opposite; how fortunate I was to survive, that to feel sorry for myself would be the greatest of insults to those who died, and to their families. I couldn’t do that to them. I owed it to them to make the most of my life; I had to live my life for 52 other people now. If I have a challenge I am not looking forward to facing, I will ask myself, ‘would just one of those 52 be prepared to do this?’ the answer is invariably ‘yes’ and so I push myself. He told me I had one of the worst cases of survivors guilt he had ever come across, and that’s why I push myself so hard. It took a long time before I accepted he was probably right.
One of the biggest frustrations and the part of my PTSD I am so far unable to overcome, are the physical symptoms. People think it’s ‘just a mental illness.’ It can be a very physical illness.
As well as the emotional cost I pay each time I push myself; the physical symptoms are much harder to overcome. When about to confront a situation which will heighten my PTSD, my body surges with an over dose of adrenalin for days and this takes a very physical effect. Headaches, countless trips to the toilet, I am unable to eat – ‘fight or flight’ they call it. I have found I can only eat yoghurt at these times. Those close to me know what I mean when I say I am on the yoghurt diet this week. My body becomes very run down, I take on too much oxygen; sometimes I have to exercise to the point of exhaustion just to rid myself of the adrenalin and oxygen. Other times I may sit in a steam room for two hours to rid myself of it. My body aches from all the fight or flight hormones; I may feel faint, but I push myself because my psychologist has explained I’m unlikely to pass out because of all that extra oxygen in my system.
My determination not to let the people who harmed me, the people who sought to cause me terror, win; means that I am determined to mentally push myself through situations where my PTSD can manifest. To avoid these situations completely, is to let the terrorists terrorise me, I’m determined not to do that. BUT, it comes with an emotional and physical cost to me. It can make me unwell. The alternative is to ‘let the terrorists win’ by living a safe life, a safe half-life, for me a half-life is a life barely worth living, and I am determined not to do that.
What can be frustrating however is that friends and family think I am unbreakable. They see a woman who has been through, and achieved, so much; and who continues to push herself. I push myself far more than they imagine they would push themselves. I have done things they cannot imagine pushing themselves through. They see a strong woman, but fail to see that rarely do we actually feel strong when we are being strong. They tell me, I am an inspiration to them, and that is sometimes where the problems lies. I am their inspiration, their tower of strength. It embarrasses me when I hear myself described this way, but it’s the word I hear most, as well as brave. I guess any of them reading this may find it a bit uncomfortable. I did not ask to be put on a pedestal by them, and sometimes staying upright on the pedestal can be an incredibly hard balancing act. If I slip, if I fall, if I break, I shatter their illusions, their hope, and their inspiration. So maybe it’s easier for them not to see the vulnerabilities. To see my vulnerabilities makes them feel vulnerable too, and so they look past the flaws, they are blind to my vulnerabilities. And so sometimes, when it gets tough, I tuck myself away, and reflect in my solitude, for which my tearful sister told me off last week.
There is a sorrow inside me, a sorrow very few see. A sorrow felt only by a tiny minority, and the only reason they can feel it or see it, is because they carry it inside them too; from them it cannot be hidden, they see straight through me. There are people who I have met, who between us, the words do not need to be spoken, they are felt. A bond that doesn’t need to be spoken and can never be broken, that others will never understand. The feelings that need to be kept inside, for fear if they were released they would never be controlled or stopped. I don’t cry for me. I try not to cry at all, because if I allowed myself those tears, I may never be able to stop them. But sometimes, just sometimes, I meet someone who can feel those tears and a few seep out to be shared.
I think that’s the case for a lot of people with PTSD, it’s not that we are weak, it’s that we are strong, incredibly strong, so strong we continue to push ourselves. Being strong and feeling strong are two very different things. To be strong we have to feel vulnerable, we don’t feel strong at the time of being strong. We expect so much more of ourselves and are far harsher on ourselves than we would be of our loved ones if they were going through it. That is why I have medical assessments saying I shouldn’t be expected to do many of the things I have pushed myself to do. That is why I wanted to get on a bus, and my family and friends did not want me to get on a bus. That is why I have jumped out of perfectly good planes. That is why I have walked through a minefield. That is why I have detonated a landmine.
I don’t do these things because I am weak minded, or a victim.
I do these things because I have an unbreakable spirit.
But I am not unbreakable.