Explaining Invisible Illnesses

I had a typically frustrating and hurried visit to my doctor this week. He's normally quite good, but a lack of empathy and understanding does sometimes come across. I wrote him a letter this morning, which many sufferers from invisible illnesses, such as ME/CFS, anxiety, depression or chronic pain may be able to relate to. I haven't decided whether to send it yet! Anyway, here it is...

Dear Dr -

Thank you for your help and support yesterday regarding my concerns about my anxiety and diazepam intake, and also for reassuring me about the other matter. I’m very grateful and in fact I was a lot less anxious yesterday as well!

I appreciate you as a doctor and all the help you’ve given me and the work you do. As you know, however, I sometimes feel frustrated by an apparent lack of empathy and understanding of me and my chronic illness, and I felt that way yesterday as well.

I readily admit to having difficulties sometimes in managing my anxiety, and that my fear of anxiety feelings sometimes encourages me to take a diazepam tablet for the sake of immediate relief; that was why I came to you yesterday for help and support. As you said, I am not addicted but the drug needs to be managed carefully. But that doesn’t mean that I don’t try my hardest to manage my anxiety in every other way I know as well. You suggested that I use distraction; well, I do that as much as I possibly can! I mean, I have a book to write! I love music, watching tennis, doing photography (landscapes and animals, mostly), socialising when I feel up to it, having sex when I can, playing with my cat, breathing in the fresh air of the downs, paddling or even swimming in the sea when I’m able to… I also practise meditation and relaxation and breathing techniques that I learned from a charity supporting anxiety sufferers (these same techniques also help my chronic pain, and were a vital part of the pain management programme I attended this summer). I do everything I can to manage my anxiety constructively and to try and get better. Yes, the temptation to take diazepam is there and I may give into it a bit too often at times. But I am the one who has to live with a condition which frightens me and causes great distress at times. And I feel sometimes that you don’t always give me enough credit for what I do to help myself which such a difficult condition. I have several friends who manage worse! (although as a fellow sufferer I fully appreciate the difficulties they face and that their anxiety is more severe and disabling than mine).

Perhaps it is partly because, when I come to see you, I tend to be worried about something and therefore come across as quite negative. Maybe I seem passive and not always giving myself enough credit, so you don’t see that positive side of me. I did however explain all this to you in an earlier, longer letter which you kindly read.

I also feel a need to correct a possible misunderstanding of yours regarding my ability to get out and exercise. I’m quoting you as accurately as I can remember. When I said that it’s more difficult for me to distract myself by going out and exercising because of my frequent need to rest, I think you said: “There’s always a reason. In my case it’s because I’m working. In your case it’s because you get a little bit tired.”

If I was a sufferer from ME I would probably feel insulted by that! But Dr -, I do not suffer from fatigue and I am generally no more tired than most people. I actually have a lot of energy and wish I could do a lot more than I presently do – as indeed I always did in the past. I often feel resentful of my frequent need to rest, which results not from chronic fatigue but because I have a chronic pain condition! My resting is not due to laziness or lack of motivation but because I am trying my best to follow a pacing programme which I learned years ago from an expert in managing chronic pain. The leaders of the pain management programme I attended taught the same thing: little steps forward, a gradual increase in activity interspersed with rests when needed to avoid incapacitating flare-ups. My chronic pain is only severe during flare-ups, but it is disabling at present because there are limits to what I can do. Those limitations are not due to being tired! I am not tired, I am not fatigued, I have a neuropathic pain condition which is notoriously difficult for anyone to manage.

It’s possible that I’m over-reacting to your comment, because I hear so many similar comments elsewhere. If that is the case, then I’m sorry. I don’t usually hear them from health professionals, however, and I think that’s why I find it especially frustrating. Please excuse me if I am over-reacting but I kept thinking about it yesterday and it really affected my mood quite badly.

I am writing this, really, not just to get things off my chest but because I believe it might be helpful to you in understanding my condition and situation. I hope it does not bother or offend you that I’m doing this. I do appreciate your work as a doctor and you have of course been very helpful to me over the years.

I also understand that you must have a huge number of patients, and that it may be difficult to remember what I have told you in the past and therefore the details of how I manage my condition. I fully admit to my difficulties sometimes with medication and that I need to be a bit tougher with myself sometimes, as well as the fact that I have never yet really been able to overcome my fear of pain and anxiety and therefore my tendency sometimes to need a ‘quick fix’. I was badly traumatised by my experience with anxiety three years ago, and would do anything rather than go back to that. But because of that, I also do much that is positive and constructive, especially as I have two difficult conditions to manage, both of which tend to worsen or trigger the other.

Thank you for reading this, and I hope you understand and accept my reasons for writing to you about this.

With best wishes

Michael Bentley

Love Letter to Myself

I do hope this doesn’t make anyone feel like puking. But I got this idea from another blogger, and due to a recent painful experience I really need it now. And I can recommend it to anyone whose self-esteem needs a boost! How often do we criticise ourselves each day? Writing a love letter feels a lot better, I can tell you!

Dear Michael

Your self-esteem has taken a vicious blow recently, so I know you need to know how much you are loved. I want to tell you that you are very special to me, and that I know you are a good person. I should know! – I know you better than anyone else does, because I’ve lived with you every minute of every day for forty-five years! You may not always feel or believe it, but you have some special qualities you can be truly proud of. I know how kind and supportive and empathic you are to your friends. How much you are willing to listen and care and understand when they have precious few people in their lives who are able to do that for them. I know how sensitive you are: how this makes you vulnerable to hurt, but also sensitive to the hurts and feelings of others. I know how intelligent and creative you are, and also how playful; while perfectly capable of speaking and behaving as an adult, you are not ashamed of your inner child and your capacity for play. This too connects to your love of animals, which was with you throughout your childhood and has recently been revived. I know how much you care about the myriad forms of life on this planet, and the dangers that threaten them – and how you see humans as an integral part of the ecosystem with a unique responsibility towards all species. I know how much you care about peace, justice and human rights, even though your willingness to fight for these causes has led to emotional suffering in your own life. That this too is a part of your sensitivity, and of the anger you feel towards those who persecute and destroy. You are not afraid of the stigma that so often comes with mental distress or illness, and are willing to admit your vulnerability and share it with others. Not only have you had to deal every day with some very difficult circumstances over the past seven years, but you have come through the worst time in your life and are now endeavouring to share the benefits of your learning experience with others, with the aim of reaching out and helping others with similar problems. And you are trying to be honest and real in your relationships with others, despite difficulties you’ve had all your life which have made it hard to show your true feelings in so many situations. I know how much you are trying to grow – away from the pain and fear of the past and the pull which it has on you, and into someone who can admit to fear and vulnerability but still develop new and stronger resources for your life in the present and future. You are always searching for new ways to look after and respect yourself and all those around you, through your growing holistic view of health and well-being, your willingness even to investigate one of the world’s main religions (you, an agnostic!) because you believe in love and kindness and compassion towards all. You are sometimes all too painfully aware of your shortcomings, and this too makes you vulnerable to the effects of those who can use that awareness to hurt you. But you are learning to develop kindness and compassion towards yourself, and in support of that I want you to know that I like and love you anyway. None of us is perfect and you know that all too well, but I see the good in you clearly and I love you for who you are.

Michael, you love beauty and wisdom and I can see that too, so clearly. You love art and nature and science, with its attitude of vulnerability and willingness not to assume the truth but to keep on testing, questioning and opening up to new uncertainties. You love the beauty of women, and your sexuality is passionate and open and full of longing. And you love the earth and the other planets, and all the wonders of the universe that lie beyond. You love the fact that the cosmos is vast beyond imagining, and that whatever humans do there is a vastness that they cannot touch. But you still love humanity and life on earth, even though you struggle with pessimism and fears for the future. You are a caring person and I love you for it.

You know you have shortcomings, but you feel them all too painfully at times. Remember that the only people who have deeply hurt or been cruel to you in your life (including this latest attack, which caused you such pain because it was by someone you’ve cared about so deeply for so long), are people who were abused themselves and were probably acting out their own suffering. They are also people who didn’t know you well, like your friends know you, like Sally knows you, like Angie knows you, and like I know you. All those who really know you, appreciate you for who you are, without idealisation but simply acceptance of what they see of your self. There are far more of these people than there are of people who’ve hurt you, and they know you far better. You can trust their judgement, as you are gradually learning to trust your own.

Not only do I know you best, but I love you too. I will help you uncover the parts of you that you’re afraid of, that you have always found it hard to express or admit to. And even when you find parts of yourself that you don’t like, and that others criticise you for, I will still love you. I will be by your side and inside your heart at all times, and help you through every difficulty and crisis. I love you. And I know that you don’t have to idealise in order to love yourself. You are okay. You can trust yourself. And you will be fine.

Just trust.

A Life True to Myself

For the past few weeks, as some Facebook friends will know and for reasons which are too personal to go into here, I’ve felt intermittent but sharp pangs of ‘iPad envy’. At times, though I know it’s ridiculous, it’s been quite a strong feeling. “I must have an iPad! I wish I could afford an iPad! Can I find a way of affording an iPad?” And even the additional complication of envy for someone I care about: “So-and-so can afford an iPad – they have such a successful career and comfortable life and they can afford an iPad and an iPhone and God knows what else and IT’S NOT FAIR!!!!!”

In my case, although I do have a fondness of electronic gadgets and mini-computers, my hankering for an iPad is based on an association with something far less mundane, so it’s not quite as pathetic as it sounds. But even so: when I reach the end of my life and look back at whatever regrets I have (and I expect there’ll be a few!), will my lack of a soon-to-be-obsolete piece of hand-held technology be one of them? Will the absence of a high-flying career, ‘successful’ in society’s terms, be one of them either?

Probably not.

Yesterday, a Facebook friend posted an article by Bronnie Ware called ‘The Five Greatest Regrets of the Dying’ (http://www.businessinsider.com/the-five-greatest-regrets-of-dying-2011-6). Don’t stop reading now! – it’s not morbid, honest! Bronnie Ware used to work in palliative care with people who had gone home to die, and during her work she learned the commonest regrets which they typically had in the last few weeks or months of their lives.

These were:

1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.

2. I wish I hadn’t worked so hard.

3. I wish I’d had the courage to express my feelings.

4. I wish I had stayed in touch with my friends.

5. I wish that I had let myself be happier (this was the ultimate realisation that happiness is, to a far greater extent than commonly realised, an attitude).

On a personal level, the two regrets that leap out at me the most are the first and third. That’s because they are both aspects of living that I’ve always had profound difficulties with, both aspects that I’m working through the most in therapy. Like many people, I experienced both subtle and unsubtle pressures while growing up, to conform to certain expectations of how I should behave, what kind of ‘career’ to go into, even (subtly) how I should feel – and of course I’ve continued to experience those pressures, not least from myself. It’s not unrelated to the third regret: I wish I’d had the courage to express my feelings. Only now, in middle age, am I learning to be more authentic and free in my relationships with others. Many of the biggest regrets I already have are because I couldn’t bring myself to express my feelings to (and for) others, in life situations where doing so might have brought so many positive things into my life, and much sooner.

What strikes me too about these regrets is that they have little or nothing to do with what society, the media, the government, or our peers, tell us we should want most in our lives. We are told to work hard. We are told to buy more things. We are taught that we are worthy if we earn a lot of money, have a lot of expensive things, and are young, desirable and have lots of sex. We are certainly told that we should be happy. Yet even this is sold as something which is dependent on our having other things (money, products, sex appeal, sex). We are not so often told that happiness is an attitude – unless it’s along the lines of “cheer up!”, “smile!”, or similarly (un)helpful encouragements.

None of these regrets have anything to do with the iPad, the iPad 2 or any other very expensive piece of plastic with a tiny piece of hi-technology inside.

Ware’s article, far from being morbid, was for me both a comfort and a wake-up call. It’s comforting to know that some of the things I want so much currently, as well as the status anxiety that often troubles and preoccupies me, are things that will probably seem very insignificant in the last months, weeks or moments of my life. And it’s a wake-up call because it’s never too late to start trying to live authentically and honestly – but the sun is getting lower, all the same!

I’m forty-five years old. My partner is fifty. Neither of us are old, but then we’re no longer that young either. And I already have so many regrets about my teens, twenties, thirties, and even about the present. I have chronic health problems which make it much harder to achieve some of my dreams, to live the kind of life I so much want to live. But things like valuing my friends, learning to express my emotions honestly to others – those are not out of my reach at all.

They’re not out of anyone’s reach – unless they are unfortunate enough to live in solitary confinement. The things that tend to matter most to us, when we reach the end, are the simple, non-material things.

As Bronnie Ware says: “It all comes down to love and relationships in the end.”

And her last words: “Choose happiness.”

Lemurs and other animals

I'm ambivalent about zoos, because I don't like to see animals confined. But a recent visit to Drusillas Park in East Sussex gave me a welcome opportunity to see some of my favourite species, and to take many photographs, especially of the photogenic lemurs! The sociable ring-tails, which seem to spend a lot of time huddled together and grooming each other, are incredibly striking with their inordinately long, striped tails, subtly coloured backs, endearing, wet black muzzles and expressive faces. As with many lemur species, their brilliant orange eyes are extraordinary. Also in the enclosure were a couple of male and female black lemurs (the females, confusingly, aren't black at all). As I watched and photographed these beautiful animals, I kept reminding myself that they are primates, as their grasping hands make immediately obvious. That means that, although their evolutionary line diverged from ours a lot earlier than that of the great apes, they are still close relatives of ours. And since their only home in the wild is Madagascar, it's always a privilege to be able to get so close to them. Having had an emotional time lately, it was great to get out on a sunny day and see some wonderful creatures from all over the planet. So despite being on my feet for far too long and experiencing a pain flare-up afterwards, I enjoyed every minute.

Some of the lemur photos as well as of other animals - otters, prairie dogs, meerkats, fennec foxes - have been added to the Animals gallery on my photography website. You can see them at www.michaelbentleyphotography.co.uk. More to come soon! :)

Friends and Islamophobes

Recently I came across Islamophobia on Facebook. Not for the first time; ever since 9/11 and 7/7 it’s been everywhere. But this time it was in a discussion under someone’s status update. It was expressed by friends, and for that reason I wish I could be diplomatic, in case they may be reading it. But it was distressing reading, and in a way I found it more disturbing because it was expressed by friends – not close ones, but friends. They are nice people.

The discussion was in reaction to an incident in London, where ‘Islamic extremists’ ceremonially burned red poppies. As I said in the discussion, the action was not something I agreed with, even though I sympathise with the feeling that presumably motivated it: that Muslim countries, towns and villages have been bombed to smithereens by Western forces, and the red poppy symbolism was seen as a kind of glorification of British wars. The reasons I don’t agree with it are, firstly, that it causes unnecessary distress and offence to the families of soldiers killed in war, who feel that their sacrifice is being mocked. And secondly, because there are other ways to protest. If they don’t like red poppies, why don’t they wear white ones instead?

The comments in the discussion came from friends who have loved ones in the armed forces, and who understandably have strong views and feelings on the issue. In fact, I could see and sympathise with both sides. But the actual comments themselves were unpleasant and disturbing. And the comments of other people in the thread were even worse – along the lines of ‘shoot them all’. One said that the offenders should be sent back to wherever they came from, and if they were born in Britain, then to wherever their ultimate roots were. This last one was both disturbing and illogical. Disturbing because it is all too reminiscent of what nice, normal Germans were saying about the Jews in the 1930s. And illogical because, if any one of us were to take a DNA test, we might be surprised as to where our roots lie. Many English people have roots in Britain that only go back a few hundred years or less, and only some of us go back beyond Neolithic times. A recent study in Germany concluded that the first farmers in the region had roots in what is now Iraq. Can there be a greater irony than that?

In response to my attempt to introduce more reason and less emotion to the discussion, my friends urged me not to forget 9/11 and 7/7, and argued that our forces wouldn’t be in ‘their countries’ if they didn’t keep blowing themselves up. I agree that 9/11 was a terrible crime, but the suicide bombers and fighters in Afghanistan do actually have a legal right to defend their country against invaders; they are doing what our own Home Guard would have done if the Nazis had invaded Britain. I am, broadly, a pacifist so I don’t like what they are doing, but as long as they don’t target civilians their actions are within international law, however much politicians and the media portray they as terrorists rather than freedom fighters. Even the 7/7 bombers were motivated in defence of Iraq and Afghanistan, but their actions were far from legal as they did target civilians – some of whom, ironically, were Muslims. It is hard to see how occupying and bombing Muslim countries can stop similar atrocities, when those atrocities are motivated by Western military actions in the first place.

In fact, it was hard to tell in this discussion, whether the participants were referring to the Taliban, the 7/7 bombers, the poppy-burners or just Muslims generally. With regard to the ‘peaceful Muslims’, they ‘only had their own to thank’. But who are ‘their own’? The important distinction is between people who commit acts of terrorism and those who don’t; the 7/7 bombers had more in common with pilots who bomb Afghan villages than they did with the vast majority of Muslims. The language suggests a dangerous generalisation and stereotyping of people as a group – and a group, moreover, of a billion people. And it suggests a further confusion. Did some of the commenters want just the poppy-burners out of the UK, or all Muslims? What about Muslims who are white, whose roots in this country go back as far or further into the past than the commenters? I’m not sure whether the possibility of there being white Muslims had occurred to them, which would mean that Muslims were first stereotyped as violent (or at least as sympathising with violence), and second as ‘brown’ or ‘black’. In which case the commenters were displaying covert racism – something which, unless they were members of the BNP or EDL, they probably wouldn’t regard as acceptable in any other situation.

It’s possible that I’m assuming too much here. But what certainly was apparent was a perception of Muslims as ‘other’. They all come from ‘somewhere else’, somewhere outside the UK and in the Middle East. They don’t really belong; they’re not the same as us. What I tried to get across in my own fairly lengthy comment was that they are the same as us. I have lots of Muslim friends and I know for a fact that they have the same feelings, problems, joys and sadnesses as the rest of us. And why wouldn’t they have? Islam is less than two thousand years old; Homo sapiens sapiens is two hundred thousand years old. Many of my Muslim friends love much of British culture, and they live British lives in almost every respect. It’s the current British wars they don’t like – and with good reason. My ‘English’ friends decried the crimes of 9/11 and 7/7, but made no mention of the torture, the massacres, the imprisonments without trial, and the bombings of towns and villages committed by Western forces. If we don’t try to understand the point of view of the poppy-burners as well as the points of view of many other Muslims (and non-Muslim peace activists, come to that!), and if instead we generalise from the more sensational actions of the few that reach the mainstream media, then what we are doing is widening the gulf between communities. We are separating certain people off as ‘other’, and projecting all our fears and prejudices onto them. Far from recognising that we are all human, and that all sides in war commit crimes just as the majority of all people do good, we are decreasing understanding and increasing the potential for anger, misunderstanding and hate. We are wasting an opportunity to help us grow as a species, and decrease the amount of conflict and destruction in the world. What a loss! What a tragic mistake!

Taking part in this discussion thread was distressing for me because some of the participants were friends. It was difficult to hear such disturbing views uttered by friends, who I know to be good people, living quiet lives and doing harm to no one. It’s a worrying thought, really. If ordinary, decent people are capable of stereotyping and generalising a cultural or religious group in such negative ways, then it’s not just the EDL and the British Nazi Party we have to worry about. And history shows us this. Hitler probably couldn’t have committed the worst atrocities of Nazism – or at least, not so easily – had it not been for the prejudices of ordinary, decent Germans that were just waiting to be exploited. He manipulated his own people through clever use of the media; and this too we can see today, if in a more subtle and gradual fashion. No country is immune from racism and fascism. There are so many parallels between Islamophobia and 1930s anti-Semitism, that we have good reason to be worried.

And there’s another aspect. If ordinary, decent Brits are capable of such confused prejudices, what about their relatives in the armed forces, who are trained to kill the enemy? If they too have the same conscious or unconscious generalisations about who the enemy is (are they only people with guns and bombs, or are they Muslims generally?), then it’s no wonder that massacres happen, that killing is sometimes indiscriminate, that civilians are inadequately protected and sometimes actually targeted. I’m not accusing my friends’ kids of committing war crimes. But why do war crimes happen? And it may be that I’ve read too much into the whole discussion, and that the participants’ prejudices only referred to the poppy-burners, or actual terrorists. But if that’s the case, then why do they so fervently support the actions of the military, who have - far too often for it to be an occasional fluke tragedy - reduced men, women and children to ashes and scattered body parts?

I am, thankfully, still friends with my friends – I hope. But the episode left a nasty taste in my mouth. How many people in this country agree with them? If it’s a large proportion, then the potential for understanding and bridge-building between communities, and for recognising what unites us rather than what separates us, doesn’t look very hopeful.

Belonging

This is a very different subject from the ones I usually write about - and a longer entry too. My sense of belonging and not belonging has shifted many times throughout my life, and so it feels easiest to tell it chronologically, like a story. I dunno, maybe it's the therapy! Either way, you can take it or leave it, but it helps me sometimes to get these things down.

My earliest clear memory is of my first day at school. I felt abandoned and unsafe, and cried the whole day. All the other little kids seemed to be taking the day much better, so I guess I could say that my earliest memory is of not belonging in the social group I found myself in.

My sense of the rest of my early childhood, however, is of feeling fairly happy and secure. I was always a bit shy, and tended to play sometimes by myself in a little fantasy world. But I still had friends, and birthday parties, and don’t remember feeling very different from the other kids. And I think I felt fairly secure within my family as well. How much of that may be due to remembering the past in a rose-coloured way I’m not sure.

My last really happy memory of childhood is when I was about nine years of age. The days were hot and sunny, and I’d be playing in the street with my sister and a girl who lived down the road, who I really liked. I’d like to think that if my childhood had continued like that, then eventually she might have become my first girlfriend. But in fact my childhood got sort of hijacked.

When I was nine we moved to a different county, as my dad got a new job. We moved to a smaller house in a less pleasant street, and of course my sister and I had to start a new school. I was very nervous, but it was okay and I ended up with a few friends there. Starting secondary school two years later was more scary, but although I was shy I still had some friends. I still sort of belonged. But soon after that my parents got divorced, which of course shook us all up somewhat. And a year after that my mum got remarried, so we moved again, back to where we lived originally! This posed new problems for me, as I found the ‘new’ family difficult to settle into and there were various strifes and frictions at home. I didn’t have the same sense of belonging and security that I remember from just a few years earlier. To make matters worse, I was very shy on entering yet another new school, and for the next two years was bullied quite a bit. I went to school every day in fear. This was, I think, my first really deep experience of not belonging.

To protect myself I spent as much time on my own as I could. I retreated into a kind of fantasy world where I imagined being a very different person. Later I found a retreat in books, especially science fiction books, whose stories were so very different from my own reality. I was nervous of boys because they might be a threat, and kind of idealised girls who came to my rescue when I was given a hard time. By the time I was sixteen things eased off quite a bit, but I think the previous few years had traumatised me and I was still pretty shy. I had one or two close friends though.

In the sixth form I suddenly found myself beginning to fit in more. The classes were smaller, and my fellow pupils more accepting of me. In my last year at school I actually enjoyed myself! I became very fond of some of my peers, and they seemed fond of me too. I no longer felt judged as a wimp, was no longer laughed at and certainly not punched or kicked. The bullying was well and truly over, I enjoyed being with people, got invited to parties and socialised outside of school. I felt I really did almost belong, and this happy feeling of being more accepted into the human race continued into the following years at college.

This change, however, was too late for the romantic feelings I had at the time. I still tended to idealise women, but I couldn’t convince myself that anyone would be interested in a relationship with me. I fell in love with a girl at school – we were both seventeen – but despite my passion I could never bring myself either to ask her out or tell her how I felt. The irony is that she definitely knew, because friends told me she did. I don’t know if she would have gone out with me, had I asked. If she had, then my sense of belonging in adult life might have been very different.

I remained ‘in love’ with this girl for years, long after I last saw her. My relations with work colleagues, housemates, etc were okay in some ways, but I remained shy and in my late twenties, I felt I ‘belonged’ less than in my final year at school. Although I shared a house with others, I tended to be isolated, keeping to myself in my room. I was very unhappy at work. But health problems forced me into redundancy, and I needed a change of career from the office job I’d been in for so long. So I took up studying counselling, and also did voluntary work on a crisis helpline. The preparation course for this was a joy, and was I think the first time I really, really felt part of a group. The voluntary work gave me a sense of purpose and also opportunities to socialise when, due to unemployment, it might otherwise have been difficult. The counselling course was great too, but here I felt I didn’t fit into the group as well. I also lost confidence in my counselling abilities, and didn’t pursue it to diploma level. Instead I started working in mental health, in residential homes. Here, as in every work situation I’ve been in, there was internal strife and politics, which spoiled the experience a lot. But I was pretty happy there on the whole, and I did make friends. The work was fulfilling and varied, and in my own slightly insecure way I felt I did belong there. In fact, especially as I did regular sleep-ins at the residential home, I often felt more at home at work than I did at home!

My sense of never quite fitting in remained however. I always felt a bit ‘different’ from other people. Looking back, I know that this was due to my inexperience of sexual relationships. The couple of relationships I’d had were brief and very unsatisfying, both emotionally and physically. As the 1990s wore on I felt increasingly lonely. Everyone else seemed to be having fun, having sex, sometimes getting married and having kids. I still believed no one could really want me in the way I needed them to, and its effect on my self confidence and self esteem was quite severe. At the beginning of 2000, when a close friend embarked on a blissful relationship, I became very depressed. I was so desperate, and yet happiness seemed further away than ever.

After about three weeks of feeling like this, fate kind of stepped in! I met a beautiful American woman at a party, who came up to me and simply stated that she wanted to kiss me! I wasn't going to turn that offer down, and although she was in a relationship and her life was pretty complicated, we agreed to have one night together. After how I’d been feeling only hours before, this was pretty overwhelming for me.

The trouble was, that night was too good! I don’t quite understand even now why this woman who was already in a relationship and only intended one night with me, behaved so passionately and lovingly. We talked about it a few times afterwards, but I never completely got me head round it. But for me, that night was the deepest experience of belonging, of being accepted, that I’d ever had. It was as if I’d been shut in a cell since childhood, while everyone outside was having fun, and then suddenly being let out and realising what I’d been missing. All my dreams coming true all at once. But only for one night. The following day, despite the experience’s beneficial effect on my self-confidence, I felt I had to crawl back into the cell, and that was hard too.

I did have a bit more confidence now, though. I felt I’d begun to join the human race. I had a couple of brief relationships that year, and though neither of them were really what I wanted, they helped my confidence too. Things were definitely getting better.

A year after I met the American woman, I said an emotional goodbye to her as she left for a new life in California. I actually met her only four times. A month later, however, I met my present partner, who I’ve been with now for nearly ten years. My feelings for Angie didn't bloom so suddenly, but now I love her deeply and she loves me too, very much. I moved in with her after six months, and although it was a struggle compromising for a long time, with both of us inexperienced at living with someone, I was happier now than I’d ever been before.

In terms of belonging, what I had now was a sense of being part of a ‘normal’ couple – a family, almost. We had our life at home together, had sex regularly, went out socially as a couple, mixed with other couples, and went on holiday together. I hadn’t been on holiday properly for decades, as I felt I had no one to go with. Twenty four hours in Cornwall in 1999 to see the total solar eclipse had been a lonely experience, as I was surrounded on the campsite by tents with couples and families – a reminder of the sense of belonging I’d had on family holidays as a child, compared with my solitary life now. In my new life with my partner, we went abroad and saw many wonderful places. It was fantastic!

I also had a new job at a day centre – just as fulfilling as the last one, but less stressful and more fun. It was the best job I’d ever had, and I felt I belonged and was accepted there too. I was very happy most of the time.

Then fate stepped in again – or it would have done if I believed in those things!

………….

Out of the blue, in 2004, I developed a chronic nerve pain condition which meant that I had to give up work. I became anxious and depressed, and started on anti-depressants and sundry prescribed pain killers. The pain was disabling: it limited how far I could walk, how long I could sit for – really almost all aspects of my life. It was difficult for my partner too, who since then has had the responsibility for bread winning and for doing all the other things I struggle with. I found a sense of purpose for a while through getting involved in the peace movement and setting up a local group with my partner. But this became an emotional strain and I had a nervous breakdown in 2008, spending much of that year recovering from severe anxiety. I did get better, with support from helplines and a lot of self help, but my life remains very limited compared to what it used to be, and all sorts of basic activities that I used to take for granted are now much harder for me and sometimes, when the pain is very bad, almost impossible.

Looked at in one way, the depression and anxiety I’ve had since the pain started six years ago are a kind of response to not belonging. I spend much of my time at home, and quite a bit of that time resting. My partner lives and works away from home three days a week, so I’m quite isolated. Often I feel that the world is going by without me. The worst feelings were when my anxiety was at its worst, in 2008. Besides being frightened I felt as if I was trapped in a kind of bubble, breathing my own stale air and kind of watching everyone outside without being able to feel a part of it. It’s very hard to describe, but certainly it was the worst experience of not belonging I’ve ever had. I really felt as if I was trapped in my own tiny, frightened world and no longer a part of the real one.

Things have got a lot better since then, if gradually so. My life still feels very limited, but I am less disturbed by it now and am gradually taking charge of my situation, learning how to manage my pain and my mood. I’m beginning to find things I can do that I get satisfaction from: writing, art and photography, enjoying the countryside even though I can’t walk very far… I’ve recently started writing a book! So I feel as though I’m gradually rebuilding my life, reinventing it almost. And as a result, slowly increasing my sense of belonging in the world once more.

This entry may seem a bit maudlin to some readers, but I'm glad I wrote it. Sometimes putting these things into written words can help to clarify or crystallise things in my mind. I’m grateful that the opportunity sort of fell out of my mind and into my laptop!

I hope something of all this is interesting or helpful to other people, too.

Summers long since passed...

I’m a chronic nostalgiac (is that a word?) about family holidays. This is partly because I don’t live in a real family (with children) anymore: it’s just my partner Angie, my cat and me. I also find it very difficult to travel far, due to the chronic health problems which I’ve had since 2004. But it’s also because, in my childhood, I enjoyed many family holidays and they provide many wonderful memories which I still retain. I firmly believe that the lives of children who are unable to have holidays are impoverished. Family holidays give kids experiences and memories which, if happy ones, will give them pleasure for the rest of their lives.

My life as a child was split into two halves: before my parents’ divorce, and after. The holidays I had afterwards differed in some ways in character, although one theme remained and that was the destination. Most of our holidays, before and after the break-up, were in France or Cornwall (as in the picture above, from the mid 1970s).

I don’t remember our earliest holidays in much detail, but I do remember the beauty of them. Setting out in the car in the middle of the night to avoid traffic was so exciting! The arriving at what was often a campsite in Cornwall, moving into a big tent with separate compartments, sleeping sometimes with the distinctive sound of rain drumming on canvas, emerging in the morning in the pinky-blue, muted dawn light… And many of the places we visited – Tintagel, Boscastle, St Ives - remained in my memory and finally drew me back decades later, when I met Angie and started sharing holidays once more. The only thing I disliked was that family relationships, and chores, remained. I hated the physical chores of camping, and as for relationships, my sister and I often argued and my parents were not happy together. But I think they made a real effort to give us kids a good time and provide memorable experiences for us. In my case, they definitely succeeded.

When I was about 11, my mother divorced my father. A couple of years later she remarried, and I have to say that the following years were difficult for me. But we still made an effort to go on holiday, and often to Cornwall again. Our family was about 50% different, but the places were the same! Cornwall is still perhaps my favourite county in England, and I think nostalgia for those early holidays is a big part of that.

With my father, meanwhile, the holidays were usually in France. In about 1980 I went with him, my sister and her friend to Brittany (which I remembered from earlier holidays when the family were still together) and L’Ile d’Oleron further down the coast. In some ways this was a difficult holiday. My sister got homesick (probably for Mum as much as home) and very moody, so her friend spent a lot of time with me instead. This I think caused a lot of tension between the three of us. I got on very well with the friend, but looking back I sense that we felt we were almost ganging up on my sister, or at least that my sister was jealous of the change in relationship. I don’t feel very good about it, looking back. Also at about this time my Dad got a job in Paris, so although we saw him very little in term-time we would cross the channel for a while in the school holidays. I loved Paris. Sometimes my sister was with us, sometimes not, and on the latter occasions while my Dad was working I would explore the streets and art galleries of the city by myself. At that time I knew Paris far better than I did London. And these holidays were a blessed relief from the rest of my life: struggling to settle in with my new step-family, being bullied at school. Paris was exciting, and I remember it very vividly. I haven’t been there since the mid-1980s.

Another holiday I remember from this time was a week in Austria with my Dad (I can’t remember why, but my sister was absent). It was a good opportunity to bond with him (we have never been close), and we stayed in a beautiful village in the Tyrol, in summer. It was a gorgeous, verdant landscape. Halfway through the week we took a day trip to Venice by coach, and that was memorable too – the only time I’ve visited that city. Decades later I saw Venice from the air on a flight to Greece, and thought back to my visit as a child, to that city which from such a height appeared so small.

Through the first fifteen of my adult years I was alone, so hardly went on any holidays. Twenty-four hours in Cornwall to see the total solar eclipse in 1999 was a lonely time, as I slept in an old caravan that was full of moths and spiders, looking out with envy at the family tents scattered around. I felt very sad, really; the contrast between that and my childhood holidays in the area was very great. The eclipse, however, made it more than worthwhile. Even though it was clouded over, the eerie darkness was indescribable, and I’ll never forget it.

My partner and I have had some wonderful holidays together, including my first on another continent, in Canada in 2003. That was awesome; I’ve never seen anywhere like the Rockies, before or since. But these trips were not what I think of as family holidays. They belong as memories. We don’t plan to have children, so for me a family holiday means a distant but sometimes vivid memory of often quite magical times. I’m very, very grateful to my parents that they provided us with these wonderful experiences. I’m lucky, because I think a lot of children even today very rarely leave the city they grow up in.

I guess the only advice I’d give a family, based on my own experience, is to make a holiday as different as possible from the rest of their lives. That way it’s a true break, even if it’s a busy one. Camping is a wonderful way of doing this. And taking your kids to interesting places, as well as the beach, helps to stimulate an interest in culture and history too. But the most important thing about holidays is also the most obvious. Just HAVE THEM!