The Pain of the Unfrozen Heart

TRIGGER WARNING: IN THIS BLOG I DISCUSS VERY PERSONALLY THE IMPACT OF DISSOCIATION AND OTHER WAYS OF MANAGING SEXUAL ASSAULT - MAY TRIGGER SOME, BE CAREFUL WITH YOUR OWN HEARTS.

Franz Kafka once said 'Literature is the axe which shatters the ice around the heart.' Colourful, but I'm not sure he got it right. I think it would be more accurate to say 'Time and therapy are the axes that shatter the ice around the frozen heart.' This has become painfully clear to me as I make progress through the recovery process.

I can tell you almost to the moment, when my heart finally was broken, nearly fifteen years ago now. I was exhausted from all the pain and distress, from the constant battling of emotions I had no control over, from the pain of broken relationships, feared and realised rejection after rejection and the constant internal commentary which was boosted by those experiences and feelings, confirming to me that I was worthless and unloved and unlovable. I didn't think of myself as resilient up to that point, but looking back I realise that I had crashed and burned so many times, that it was almost an automatic response for me to move to a new area, and begin again - new home, new job and, most drainingly, new relationships and friendships. In the moment my heart froze I suddenly felt all the accumulated effort and pain as a burden I could no longer sustain. In that moment, my mind decided that I needed to stop feeling, rather than constantly keep feeling the pain of my life so keenly.

It has been easier in some ways. I was, once again, the victim of sexual assault, but instead of being capable of reacting in any way that any onlookers would deem 'appropriate', I walked out of the situation and continued as if nothing had happened. Why not? It was just another example of how worthless I was, a confirmation, from a stranger this time, that the abuse I had suffered at the hands of those close to me, was indeed down to me - after all I was the common factor in it all.

There are those, particularly in the media, who tell us how victims SHOULD behave. How would they know? If you have never had your spirit broken, been convinced that there is no one out there to hear your screams or cries for help, how could you know what it is like? Being a victim of sexual assault once, makes you more vulnerable to such abuse in the future, (although it is not always inevitable). That seems to be so hard for many people to understand, I mean isn't it a case of once bitten? Let me ask you, if you have constantly been told that what is happening to you is as a result of you and your behaviour. If you are told that something about you meant you 'deserved' it. If one of the voices telling you these things is your own thoughts. If you have become accustomed to abuse as an expression of 'love' and been told that you are 'special' because of it. Is it any wonder that as an adult when you encounter the same behaviour towards you, you don't fight back, you don't 'just walk away'. Survival means that often survivors divorce what is happening to them from their conscious experience. I was passive - a victim - because this was the way I had managed to survive numerous abuses from my childhood onwards.

Having, stopped, short, never to feel again, my heart was incapable of feeling anything, either good or bad. Now, having begun the process of healing I am learning to recognise the tingles and pangs of the ice cracking. Sometimes, it's ok, I realise I can survive feeling again, but at other times even the good feelings are problematic. The other day I mentioned that I was worried I was being 'hyper' to a friend who is familiar with my cycles of mood - 'No,' she said, 'That's happiness'. My immediate impulse was to panic, in case I couldn't handle it, but I sat with it for a moment and realised it didn't have to spiral till my behaviour was out of control, prior to the inevitable crash to the emotional floor. Instead, I allowed the feeling of contentment and enjoyment of the afternoon to run its course and it was ok, in the end I enjoyed the whole day.

I'm off on a break for a week soon. As I contemplate dropping my dog off at the kennels I have encountered a pain from separation anxiety of sorts. Last night, I shed tears. Initially, again my immediate response was panic, what if this is the start of a depressive episode? Then, I allowed myself to sit with the feeling. I tried to use wise mind. After all, we spend every day with one another and she is good company. It's ok to miss her.

The fact this relationship with my dog is having such an impact on me emtionally worries me. I realise that this is part of my natural fear of fondness or love. My dog has been a big part of helping me to heal. I can tell her 'I love you' and I feel that is natural. It is a huge step for me to transfer that ability to humans. As a survivor of abuse the emotion that I am most confused about is 'love'. It is a huge task to separate the sexual from this emotion and to be able to recognise the different nuances of love that are part of the full range of human relationships. For me there is a yearning just to be held, by someone safe, without it leading anywhere. So many times, people touched in ways that were damaging without asking permission, or without a bond of trust to enable me to feel that I had any say over what would happen next. It scares me that my unfrozen heart could respond to another human being and it not lead to an abusive relationship. I wouldn't know how to handle it.

The other reason I fear my love for my dog is that, along with the love emotion, I have always, before my heart froze, feared the ending of any relationship. I have always anticipated the loss long before it arrived. When I realised how fond I was becoming of my dog, I started to fear how I would cope when she dies. This is the benefit of not connecting with any other creature, death doesn't have to hurt so much. Except that's so not the way it works, is it? Even if I don't acknowledge it, I am connected to others around me and losing them even temporarily will be FELT by me, that's part of being human.

In the past, often, rather than wait and see, or trust the relationship I would behave in a way which would hasten the ending I feared so much. That way I believed the pain was somewhat controlled by me. I believed that it was just me fulfilling what I always 'knew' would happen.

In the here and now I am learning new ways to be in relationships. Rather than impulsively rushing in where angels fear to tread, I am learning to be 'careful' with my heart - it is after all heavily scarred and rather fragile. I have managed to focus on friendship at the moment - anything more intimate is beyond me right now. I noticed the other day that there is a lot of change in a number of friendships. This has meant changes in routines - a friend who may have been available to go for lunch is no longer available. Forgetting this the other day, I phoned her at work. We had a quick conversation and I put the phone down. My old familiar panic feelings, followed by shame and then embarrassment flooded over me. In the past that would have meant me backlashing by cutting myself off from her and self harming for being so stupid. Instead, I spoke to myself (out loud) and used wise mind to query if the interaction really meant an end to the friendship. I also used a mindfulness breathing exercise to calm myself and focus on the positives of the friendship, which include a face value honesty that I have always appreciated. When she phoned later in the day, I picked up the phone and we agreed to meet as normal later in the week. For those not familiar with BPD this may seem something very small, but not making this exchange an all or nothing matter, and thereby saving the friendship is a massive step forward for me.

I guess that the pain I am feeling now is not unlike when you are in the process of trying to warm your hands after a good game of snowballing. You know you need the blood to flow again for your hands to function, but you also know that as the blood does so you will feel a world of pain - for a time. As the emotional blood flows back into my heart - I know that it is painful at the moment and will continue to be so, as I risk my heart with others. That pain will remain for a time, but one day my heart will be able to function as it was designed to, maybe with one or two little twinges from the scars it bears, but it will be fully, finally, unfrozen.

What on Earth is DBT?

I have found myself being asked this question a few times by people who follow my twitter feed or this blog. It's funny how easy it is to obscure your message by the use of jargon. I actually enjoy explaining what DBT is and what I have got out of it as a treatment - it has been a massive positive in my life. Unlike the question 'what does the borderline in BPD mean?' Not easily answered as frankly most people now don't actually agree with it as a descriptor of this condition - anyway that's another topic altogether and if my DBT has taught me anything it is not to be distracted by thoughts that are not relevant to the here and now.

Dialectical Behaviour Therapy (DBT) was developed by a clinical psychologist in America called Marsha Linehan (do google the name she has produced numerous videos and articles about her therapy) in the 1990s. It is a combination of mindfulness techniques and Cognitive Behavioural approaches to help those diagnosed with Borderline Personality Disorder learn to understand and control the extreme fluctuations in their emotions.

As a replacement for BPD as a label some have taken to referring to the condition as either Emotional Sensitivity Personality Disorder or Emotional Dysregulation. As a descriptor I find the latter preferable. Whatever term you choose to describe it, what it meant for me was a see sawing of moods which could cycle from being 'hyper', excitable, voluble and energetic to extreme feelings of depression with a high degree of suicidal feelings within the space of a few hours, several times a day.

As you can imagine such constant cycling of emotions can be extremely draining and distressing. A key hallmark of the condition is poor impulse control accompanied by strong urges towards self harm (or self destructive behaviours) and suicide. Throughout my life, until I really started to practice my DBT skills, the idea of killing myself or harming myself was an almost constant presence in my consciousness.

DBT is not offered as a cure for these issues, but seeks to offer the sufferer the means to interrupt and then control the emotional storms which are the moment by moment experience of BPD. One important point to make is that no treatment in Mental Health should be considered as one size fits all. This is why the individual sessions of DBT are so crucial for each person. I can only decide what skills I need to master in order to manage my emotional life. Because it is a skills based treatment it requires a major commitment, not only during the time in group and with your one to one therapist, but, more importantly, after discharge the treatment will only work long term if I commit myself on a regular basis to remind myself of the skills and to practice them.

I remember my GP expressing her frustration with patients who had been referred to the Physiotherapist to deal with one condition or another. She would make follow up appointments to see them after six weeks or so. 'How's it going?' She would ask on their return. 'No use whatsoever'. She would persevere 'Really?'. 'Oh yes, I went twice and to be honest the exercises were alright when I was there, but then the complaint returned in between visits.' Now, it seems to me that the GP shouldn't then have to explain that these exercises should be repeated daily in between 'visits'. If I think after discharge 'well that's that then' not practice or take seriously the skills I have worked so hard to develop, during my time in therapy, then I don't think I should be surprised if I start to lose control and become a prisoner of my emotions once more. I need to keep going with it.

So what are these skills?

The core 'treatment' is a weekly skills group along with a weekly one to one session. In the group we are introduced to the skills and encouraged to start to use them to manage day to day issues as they arise. In the individual sessions there is an opportunity to discuss in more detail the skills that are most useful to me as an individual and the key parts of my emotion dysregulation I should be working on.

There are four main modules:

1. The Core Skill of Mindfulness runs throughout the length of both the group and individual sessions. (typically one year, although some centres are trying to offer 6 months which only allows one cycle of the skills modules).
2. Distress Tolerance - skills to help me manage when I am in distress without reverting to self destructive and self harming strategies that I may have used all my life. (here the importance of developing familiarity over a longer period of time becomes clear).
3. Emotion Regulation - longer term skills to enable me to recognise what feelings I am dealing with and to develop strategies to maintain a stability in those emotions. (these have become more regularly used by me since my discharge in seeking to maintain my progress with managing my emotions)
4. Interpersonal Effectiveness - anyone who has BPD or has lived with someone with BPD will tell you that the emotional maelstroms inherent in the condition wreak havoc in all sorts of important relationships. Reading other people is not a natural skill that I possess because of my invalidating upbringing. This is an area I need to consciously be aware of and that I need to practice constantly in order to counteract the natural urge to respond to my instinctive (often mistaken) feelings about the relationships around me.

I completed a one year programme, during this time, each module is introduced and after six months, and a review of progress, they are repeated and reinforced both in the skills group and in the one to one sessions.

This is a very sketchy outline of DBT, there will no doubt be many other questions.

Such as, what do I mean by Dialectics? Essentially, my understanding (which will be limited to my own experience) is that it seeks to bring stability and balance to my emotional life so that I can enjoy the parts of my life that are to be enjoyed, without expecting everything to be 'sorted' or 'perfect' (I've covered this in my blog on recovery and what it now means to me here: http://bpdlifeinthemoment.blogspot.co.uk/2014/06/putting-jigsaw-together-learning-to-fit.html

The following are links to helpful websites about BPD and DBT: http://www.dbtselfhelp.com/ has really useful exercises and videos for the practice of DBT skills and Mindfulness, www.my-borderline-personality-disorder.com (Healing for BPD) is an online version of DBT but there are also really helpful articles and examples of using DBT skills in recovery. There are many other websites that offer useful mindfulness videos or self soothe ideas etc. Just be selective and be aware nothing will bring about any miracle cure and any skill needs a lot of time and hard work to develop.

I think the best way to find out about Marsha Linehan who has an amazing story about coping with BPD herself, is to just google her name.

Access to DBT groups in the NHS seems to be very limited. I have been so lucky to live in Lancashire and to be able to access the Central Lancashire DBT Team for nearly 18 months. I am so grateful for a local NHS Trust (Lancashire Care Foundation Trust) which has seen fit to offer not only this, but also other therapies for BPD. Having not meshed with one previous therapy, I only had a waiting time of one year to access DBT. I am aware that not every area has so much to offer to what is a cinderella condition, but hopefully, if I can encourage others to ask about it and whether it is available in their area then, maybe, some 'up high' might begin to see the light.

For me, having my discharge report set down in black in white that I have not self harmed for over 18 months has helped me to see just how far I have come. My time in the group was an important part of my journey but I haven't arrived, I'm just moving on. I continue to work on my Emotion Regulation skills, occasionally I use my Distress Tolerance skills when an echo of my past takes me by surprise. Rather than creating dependence one of the best things DBT has given me is a developing confidence that I am ready for life without Mental Health Services, that I am capable of maintaining and building on the progress I have made so far and that even, if I may never have a life without my turbulent emotions, they will never have to overwhelm in the same way again.

I will be forever grateful for the visionaries behind this great innovation for BPD sufferers.

A Visual Tool for DBT Opposite Action

When I am overwhelmed by negative emotions and can't find a way to anchor my thinking, I use some tools that have been designed to help children. And why not? Since when do we think that only children respond to colour, visual stimulus and fun when learning? I have never been a traditional learner - I was a nightmare at school because I couldn't focus well when required to just sit still and 'learn' I need my learning to be vivid, active and engaging.

As a person with BPD my whole life has been full of drama and interest, and it's not always meant negative things. I am an interesting person to know and talk to. I do need tools that help me to manage the extremes of my emotions. This simple tool helps me to find a way through the fog of negativity about my life to be able to use 'opposite action' and 'opposite emotion' DBT Skills.

Some aspects of my life may not be as colourful or full as others and this helps me to see that. Equally it helps me to see those aspects of my day to day life which can help me feel better. No matter how much it feels like it - no life is either all good or all bad. I found a picture on Pinterest which says: 'Don't let a bad day make you believe you have a bad life.' It is a little trite, but there is a grain of truth in it, especially if I am trying to make sense of the whole of my life - no matter how bad some days are at the moment I know I have survived worse. I like having the completed image this tool creates it's a reminder that the bright moments, shine brighter because of the darker moments. If I can focus on these moments one by one as they happen, I can learn to enjoy them for what they are in the here and now.

The tool also helps me to define the things that are important to me. This is essential for those times when I feel 'all at sea' emotionally and need a reminder of my core values - what matters to me and therefore, what gives me meaning in living.

The other thing this tool gives me is a focus for mindfulness and I can enjoy colouring 'in the moment' once I've written in the names of the people and things that are good in my life. When I come back to it after some time I find that some of these remain constant, but others can change and I may have changed too, so that maybe I can see more of the good about my life. It's great to keep them as a record of good things when I have those 'I hate my life' days or weeks!

Putting the Jigsaw Together - Learning to fit the pieces of My Life together

One of my favourite puzzles as a child was a much loved and very battered jigsaw puzzle of the teddy bears' picnic. In the midst of a chaotic life the satisfaction of putting the last piece in place to make a familiar picture was so satisfying.

In the past couple of days, I started thinking about my life as a jigsaw - it's not a new thought for me, I loved Carole King's 'Tapestry' album and really loved the lyrics of the title track. Tapestries are things of beauty woven from disparit bits of thread or wool. Looking at the back there is no sense, no beauty, only a chaos of unconnected threads. Only when the picture is complete and viewed by taking a step back, can the onlooker see any beauty or sense from it.

So it is with my life, particularly when considering the part my MH condition has played in it. I mean who really wants to acknowledge that any good can come from something so difficult and painful? Whether I like it or not, for good or ill it is one of the things that has shaped the person I am today. A few years ago I actively hated that person to my very core - in the reflection of other people's treatment of me, I could see no value in my being.

Having battled my unseen and unnamed demons for many years my life resembled the jumbled mess of pieces when I first tip a jigsaw puzzle from the box. I could see the perfection I aspired to, almost like the completed picture on the front of the puzzle box. Somehow, knowing how I wanted my life to be made my struggles all the more painful.

I don't know my bookshelf is wonky until I put a spirit level against it. I think it is part of being human, some masochistic streak in us which means we always compare ourselves with others. Particularly, in regard to the life I've lived, I used to resent and envy, in equal measure, the 'ease' with which others seemed to float through life. It has taken me a long time and honest conversations with many friends and family to realise that no one has a perfect life. If I set that as my goal, particularly when learning to live with my mental illness, I will constantly feel like a failure.

I have spent the last nearly five years learning about BPD and how I can manage to live with it, without it ruining my life. When trying to complete my jigsaw puzzles I cannot simply start to put pieces together without first having an idea of the picture I am trying to create. Before I can know if I am managing my BPD I need to first know what a 'good life' means for me. As anyone with BPD knows this is so challenging, because one of the basic building blocks of life - our identity - is one of the central aspects of life that are disrupted by this condition. My sense of who I am has been so warped and distorted by my experiences, particularly in my experience of being parented, that, nearing my fifties, for the first time I am in a place where I can begin to define what makes me, me. For as long as I can remember before my diagnosis, my sense of self was created by what was being reflected back to me by others. Just as the moon's brightness depends on the brightness of the sun that it reflects, so how I felt about myself became a reflection of how others perceived me.

I am in a period of experimentation with new people, experiences and attitudes to life. I am learning to define my own responses to relationships and situations, rather than rely on behaviours and reactions I have learned from avoiding the emotional fallout of my BPD.

Finally, I have stopped looking to rebuild my life on an unattainable model. Whether that is the life I wish for, or someone else's life, that is not the template of my life as it is. My life as it is has parts that work well together, like my enjoyment of walking and my dog - they just naturally go together. Other parts of my life I need to adapt to - my BPD is one of those parts. My life has changed out of all recognition from five years ago. My goals in life are different. I now accept and enjoy aspects of my life I could never have ever imagined accepting previously.

Getting rid of my car, having never been without one since I learned to drive at the age of 17, has taught me that my problem solving skills are very good. I am learning to trust and realise that I do not have to 'bare my soul' for people to accept me. I don't need to explain my reasons for things such as not going to social events. In the past I would either force myself into these situations, then resent the friends I was with, or I would cancel and then over explain in a bid to avoid rejection from my friends. This has given me a new freedom in friendships, where every interaction is not a make or break, life or death decision.

Although I am at the end of my time in Mental Health services (I hope for the long term, but who knows?), I know my life is not completely 'sorted' - despite the panic inside I am realising that the long term nature of BPD means that no matter how long I had been in services I would never have a completed jigsaw with a perfect life at the end of it. When I remind myself that my jigsaw is still in progress and the last piece will never be put in place until my life is completed, I can stop feeling that I have 'failed' at treatment. I can stop putting pressure on myself to have everything in place in time for my last Care Co-ordinator meeting. I can stop panicking that I don't know what job I will do in the future. I don't have to beat myself up that I don't have any long term relationships on the horizon.

Recovery for me no longer means that I have everything sorted from my childhood, or that I have a perfect life, or that I will never be troubled by my condition again. That puts way too much pressure on me along with the fear of failure. I don't have to pretend I have it all sorted, or that I have a perfect life. I do recognise that I have moments of contentment and happiness, more often than in the past. I am no longer suffering the physical effects of long term anxieties and depression, although I remain on medication which maybe has to continue as part of my treatment at the moment. My life jigsaw is not complete, but it is no longer a jumbled mess of pieces, there is a more cohesive picture of me emerging - that's something that is satisfying.