Some feelings on guilt and chronic illness

This is going to be a bit of a long and rambling one, but please bear with me. I have some strong feelings and I’d like to get them off my chest, though this will be a bit of a stream-of-consciousness thing (again) and will not be edited.

There is a strong, age old relationship between chronic illness and guilt. No matter how we try to apply logic to the situation, the guilt creeps in, because logic rarely has any influence on emotion. There are many negative emotions associated with chronic illness, but once we get past the stage of denial (a stage many of us spend year in, without ever realising it is there), I think that guilt is the most common and pervasive one. At least, that seems to be the way it is for me, and guilt always follows a period of denial.

There’s a lot for me to feel guilty about at the moment. With everything that’s been going on regarding the coronavirus pandemic, it seems like the whole world is awash with seething, uncomfortable, and unprecedented emotion. Like many people, I guess I’ve just been trying to carry on as normal as I can, for as long as I can, but this week I have finally passed out of denial and into the stage of full-blown guilt.

This isn’t to say that it’s come out of the blue: this has been building up for a long time, and for an equally long time (it seems, at least), I’ve been trying to minimise it, to pretend it isn’t there. I guess that’s what I’m trying to do here, to distil all the complex emotion stirring around in me to some kind of sense. I don’t know if it’s an anxiety thing, an autistic thing, or just a plain human thing, but I’ve discovered that I don’t generally know I’m experiencing a particular emotion until it becomes too overwhelming to deny. It feels like, I’m okay . . . I’m okay . . . I’m okay . . . I’m okay . . . then all of a sudden, as if out of nowhere, I’m not okay. Very much not okay. It feels like it comes out of the blue, though in reality it’s been there for weeks, if not months, if not years, I just haven’t been able to register the fact. I don’t seem able to process my own emotional barometer in real-time.

I’ve known for some time now that I’m very much not a good fit any more for the job I do – the job I’ve done, basically, for over twelve years now. There’s been a lot of water under the bridge in those twelve years, and I know more about myself now than I ever dreamed of back then. Back then, in September 2007, all I knew was that I had some kind of condition with my knees that caused virtually constant pain, swelling, and intermittent periods of complete agony. I was twenty seven, just starting out on my nursing course at the University of Leeds. Things were difficult then, for sure: I had no pain relief that worked, no diagnosis, and no treatment for my condition, though I had started to take the first steps towards getting these.

My years at university passed in varying degrees of pain, but I managed to cope. The pain, also, was confined to my knees and hips: from the waist up I was pretty much fine and dandy. There were ups and downs over the years, but we were moving steadily forward in regards to getting to the bottom of my troubles. I was diagnosed, as I’ve mentioned before on here, with early-onset osteoarthritis in the knees, alongside a ‘benign’ condition known as lipoma arborescens. I coped, completed my diploma, and graduated into the workforce.

That was when the focus shifted somewhat. After graduation, I went through three years of what can only be described, in retrospect, of sheer hell. I struggled severely with the nursing, eventually shifting into working as a healthcare, my father died, and I began suffering with migraines (2011). I went through a traumatic time being investigated at work (2012). I had terrible pains in my ankle and feet, and eventually progressed to pains all over my body and constant stabbing pains (like broken glass) in my knees that restricted my walking to a short-distance, agonising hobble, with a side-order of panic attacks and incontinence that led to my being diagnosed with anxiety (2013).

Through all of this, I continued to work, though it was difficult-bordering-on-impossible in my pretty physical, stress-and-anxiety inducing job. Things started to look up, eventually, in 2014, both because I transitioned into bank work (meaning that I could control my hours and, to a degree, the places I worked) and because I finally found a cause for the increased pain (inflammatory arthritis, to go on top of the osteo), treatment, and relief in the form of methotrexate, my miracle drug.

Things continued on, through 2015, 2016, 2017. Things were looking good: my work was stable and, thanks to the methotrexate, my pain was finally under control. There was a large degree of stress through late 2017/early 2018 as I bought my first house, but such stress was to be expected from such a large and momentous change. I can’t put my finger on exactly when things started to become more difficult again. Somewhere in 2017 or 2018 is my best guess. My knees were no different, but my feet and ankles were becoming worse (especially my left ankle: the bane of my life since the age of fourteen), as were my hands and wrists. I was permanently exhausted, a sensation I for a long time put down to anxiety and stress. In addition, participation in a remission research program where my methotrexate dose had been halved led to the worst pain I think I have ever experienced – and an upping of my dose by more than twice. I was also in that year diagnosed with hypertension (high blood pressure): a condition from which my mother had also suffered, though to a much greater degree.

The tipping point came, I believe, in June of 2019, when the pain in my hands and wrists escalated to such a point that I could hardly grasp anything, and feared to be able to do any part of my job. This was the point where I knew something was going to have to change. I had already been looking into retraining in bookkeeping, and was scheduled to begin my first course in October: this was a timely reminder that I needed out of this job, and as soon as I may at that.

We found some treatment for the inflammatory pain in my hands and wrists, a combination of steroid injections and sulfasalazine, but they never have gone back to where they were years ago. A period of several weeks where I did not work in 2019 (due to awaiting a delayed DBS check) confirmed that, when not working, I had little-to-no pain: it was definitely the job causing the problems. I threw myself into retraining with enthusiasm, whilst at the same time finding it more and more difficult in my current job. Moving patients was becoming difficult, sometimes impossible due to the pain in my hands and wrists. I was diagnosed with Vitamin-D deficiency, finally getting an explanation (if only partial) for my constant fatigue and exhaustion. I started on the second phase of my retraining in early 2020, all the while continuing to apply for jobs in my new field, increasingly aware that, work-wise at least, I was ‘living on borrowed time’.

Then March 2020 hit, and with it, the coronavirus, Covid-19. All of a sudden, work that had already been precarious was made even more so, because with my methotrexate treatment combined with my high blood pressure, I was classed as at increased risk. Working with Covid-positive patients or on ‘hot’ areas was going to be a no-no. For the first several weeks of the crisis, things went fine: in fact, as the hospital began to be emptied to make way for the influx of patients expected when the wave hit, work was much lighter than usual.

But throughout all this I knew what was coming: that there would come a day when the list of areas where I could safely work would shorten dramatically, and I would have to take a back seat. Where others would be rushing in, I would have to be backing out. Which is where, after all this convoluted preface, the guilt really kicks in.

People with chronic illnesses are no stranger to guilt. Every time we become unable to do something we used to be able to do – that others can do – the guilt hits. Every time we have to pass something up, or back out because we are no longer physically able to (or are able to, but not without dramatically increased pain), the guilt hits. For those with chronic illness working in healthcare, this guilt can really double down on you.

I don’t think we do ourselves any favours, and I do think that many of us with chronic illnesses continue to work long past the point where we should have switched to something else. It’s the same something that keeps healthcare people working when they’re sick and really shouldn’t be there, thereby making things worse for themselves and everyone around them, albeit unintentionally. It’s guilt – and a sense of being responsible for others and not wanting to add to their (our colleagues’) burdens. And that’s present even in healthcare people without chronic illnesses.

There will be many people, right now, who are continuing to work and put themselves at risk because of that guilt. People who should absolutely not be there, but either because of guilt or because of a denial of their own risk, they will be. Those who have heeded advice and either taken themselves out or been redeployed to safer, ‘cold’ areas will wake up every day with that guilt eating away at them. Guilt, a feeling of failure – even a feeling of being a coward.

It’s not permanent. It’s only temporary, because although we don’t know how long this stage will last, it won’t last forever, and we will be back where we want to be. But for many of us, the guilt will remain. I say we, and us, because although I don’t know anyone else personally in this situation (at least, I’ve never discussed it with anyone else), I know that I’m not the only one. If writing and blogging and reading others’ writing and blogging has taught me nothing else, it’s that if one person is feeling a particular way/has had a particular experience, others will also have. And those others will just be waiting for someone else to acknowledge it before feeling free to admit to it themselves.

We’ll get through this, and know we’re not alone but the guilt . . . I don’t know how that’s going to be solved.

And I’d really like to know.

Some thoughts on self-worth

There is generally a long gap between blog posts for me. This is not (necessarily) because I have nothing to say, but rather that I have so much to say, on so many issues, that I don’t know where to start. I could make lists for hours of all the things I want to write about, then write about nothing because I just can’t decide which is more pertinent/important right at that moment. I suppose that I need to be more disciplined about this, but I don’t know how much headway I’d make. Today’s subject, however, comes from close to my heart, and as I have just spent a weekend away at a friend’s house it seems the right moment to discuss this.

This is the feeling of inadequacy I have, the feeling that I’m not enough, that my presence is not enough. I’m not doing a very good job of explaining this. The fact of the matter is my estimation of my self-worth is so very low that part of me simply cannot believe that anyone would ever want to spend time with me: therefore, if I’m spending time with them in their space I am imposing on them. Part of me (often the larger part) really does believe that there is no reason on earth why anyone would willingly share their time/space with me, therefore if they are doing so it is because I have pushed my way in over the top of what they want: that they are ‘putting up with me’ rather than actually really wanting me there.

This is a difficult feeling for anyone to overcome by assertions to the opposite. No matter how many times a friend reiterates that I am welcome there any time I like, there is always that voice inside me that insists that they are only saying this in order to be polite. There is no way they could actually mean it, because who the hell wants to spend time with you?

This goes back a long way for me. I don’t really remember all that much about before my mother died (I was almost ten at the time), but in the years afterward there was a very strong sense that I was not wanted, that my mother’s presence had been the only thing that had made mine tolerable. My father would say ‘I can’t believe she’s Jenny’s daughter’, or comment that my mother ‘would be turning in her grave’ if she could see me. I’m getting a little emotional merely writing this.

It was also commented that I was spoiled, and that when my parents (read: my father and stepmother) were away together they never argued: they only argued when I was around. Ergo, my presence was the cause of their arguments, and without my presence all was well.

I’m not trying to suggest I was an angel, or in any way perfect (I was a child, after all, and there isn’t a child alive that isn’t something of a trial to their parents). But it was made abundantly clear to me that I was the source of all agro within our house. No doubt being an only child only intensified this feeling: there was no-one to ‘share the blame’ with, to compare notes with, with regards to how my parents treated me.

Don’t get me wrong: they were not bad people. Nobody is perfect, and I do believe they were genuinely trying. But we were very isolated, there were no other close families with which to compare and contrast, and I was being told so many things by so many people I didn’t know what was right or wrong. I don’t think they intended to make me feel the way they did, or to make my life miserable. But isn’t the saying that ‘the road to hell is paved with good intentions’?

Perhaps I was spoiled. I don’t know. But I do know that the state of being spoiled is not the child’s fault. I don’t want this piece to be one long lamentation about how badly I was treated (emotionally speaking) as a child and a teenager, because there are many, many people who have had it a hell of a lot worse, and I was well cared/provided for (again, from a physical perspective at least). But what I did have was a lot of formative years being made to feel like the squeaky wheel, the cause of all problems within the household, and both a disappointment and an embarrassment to my ‘saintly angelic’ mother’s memory.

Is there any wonder that even as an adult of almost forty I find it pathologically impossible to believe my presence could ever actually be wanted? Especially when (no doubt due to my as-yet-unknown autism, anxiety and depression) most of my working life reflected the same sort of ‘never good enough, always too much of the wrong thing too little of the right’ attitude? This is a bit of a stream of consciousness piece, and I find that I’m crying now as I write this. I just hope I’ll have the nerve to post it before I get a chance to talk myself out of it.

Part of me thinks that I’ll never get over this ‘never being enough’ perspective: I can’t see anything that I can do. No matter how much I try to apply logic to the situation, no matter how much other people try to convince me the opposite, I simply cannot get over that feeling that people’s lives are better off when I’m not in them. That all I do is cause trouble.

I’d like (boy would I like) to not feel this way. But I can’t see any way to.

Some experiences with traveling – and some difficult admissions

I have always struggled accepting the concept that I am, in the traditional sense, ‘disabled’. After all, my condition is (relatively) under control, I am able to do most things I want to do, and am able to support myself in a job that is fairly physically demanding without too much difficulty. Up until recently, I shied away from the idea of considering myself disabled, always answering the question on job applications ‘do you consider yourself to have a disability?’ with a resounding ‘no’. Not because I am entirely able-bodied, but because I did not feel I could in all conscience use the word ‘disabled’ in conjunction with myself.

My opinion on this matter has changed, fairly radically, within the past few weeks. I am starting to see the sense behind the social model of disability, which states that we are rendered ‘disabled’ not by our condition(s), but by the society around us that makes no adjustment to our individual needs. This was brought home to me very starkly during my recent visit to New Orleans.

My story begins before my departure, in the simple decisions about a) whether or not to take my crutch with me on holiday (I had taken it only once before, to Cape Town on my last visit, and had not needed to use it once I was there, or even, really, in the airport) and b) whether or not to avail myself of the new ‘hidden disabilities’ lanyard rolled out by British airports (well, Manchester and Heathrow at least, and I presume others). This last decision was made for me by my experiences at Heathrow airport returning from Vancouver last year. Under a great deal of stress, I had a meltdown in Security and was (in my opinion) lucky not to have suffered repercussions of this. It was only thanks to the kindness and understanding of an unnamed Heathrow employee that this was averted.

But, it made me realise that my autism is a serious ‘disability’ when traveling, subject to physical and mental stress, in an environment not within my control around large groups of people. So, I decided to avail myself of the service offered, and found myself infinitely grateful for having done so. I may go into more detail another time: a review of my experiences of the program would be beneficial.

The first decision, whether or not to take my crutch with me, was a more difficult one to make. I had not taken it the previous year to Vancouver, and had not in truth needed it. I hadn’t needed it, really, since 2014, before I was started on methotrexate, which curtailed my inflammatory arthritis to the point where I was officially in remission. Things had changed, however, this year. With my commencement with remission clinic in January and the subsequent halving of my methotrexate dose, I had been noticing an increasing level of discomfort in my joints. Not enough to really complain about, but enough to notice.

Then, just two days before departure for New Orleans, I had the first flare-up in over four years. It was not a severe one – one I would term ‘moderate’ – but my right knee was stiff and sore in a way it had not been in years. I made the decision to take my crutch, and it was in hindsight the best decision I could have made. You see, whilst I was in New Orleans, I suffered the worst flare-up I had experienced since 2014, one of the most severe I have ever had. My right knee swelled up, my whole leg in agony and no position comfortable. I could barely walk even with the help of the crutch, and without it I would have been utterly sunk. I don’t think I could have left my room – could scarcely even have made it to the bathroom – without its help.

This was a crushing blow to me. I had hoped (dreamed, maybe) that I might be able to be weaned off of the methotrexate entirely. With the slight but noticeable deterioration in my condition over the past few months I had given up on that idea by this point, but hoped I might be stable at this dose enough to be able to continue at it, albeit with a slightly higher degree of pain. This outrage, however, put the final nail in the coffin of even that idea. I had to face the truth – that I would only be able to continue a reasonable, functional standard of life with my previous dose of methotrexate, unpleasant though it was and sickly though it made me feel. Anything was better than this monstrosity.

As usual, the flare lasted only three days, but I had the added complication of plantar fasciitis to consider, which had come on (bitterly) the day I arrived in New Orleans and has not shifted yet (a side-effect, I have no doubt, from the flare and the extra stress it put on my leg and foot). It served to seriously curtail the activities I might have engaged in during my holiday, and has ensured that, wonderful though the experience of being in New Orleans was, it will always be associated in my mind with severe pain.

This was nothing, however, with the sheer, tortuous discomfort of my journey home. I had never suffered air sickness before on commercial aircraft (excepting on a rather turbulent flight from Manchester to Heathrow last year), but this time I suffered severe sickness on both outbound and return legs of my journey. My time in the airports was spent in a hazy fog of ‘unwellness’, struggling against severe, constant nausea and constant physical fatigue. How I made it home I cannot now explain, as I was exhausted to the point of collapse the whole way. I didn’t eat for almost twenty four hours, from leaving the USA to arriving back at my house.

I still can’t really begin to make sense of the confused mass of feeling within me regarding this whole experience. I have never before felt so ‘disabled’, and never until now been totally ready to accept the label. I was disabled on this trip. I was disabled by the fatigue and exhaustion of navigating airports and carrying my luggage (all whilst struggling with a crutch). I was disabled by the exhaustion of having to pretend to be strong and independent when I felt I could barely support the burdens I was carrying: the exhaustion of feeling ashamed of my relatively moderate problems in the face of those much more ‘properly disabled’.

This is the paradox of being ‘in between’. Neither totally abled (though indistinguishable from such by everybody I work with and care for in my work) nor acceptably disabled (not visibly recognisable as such even in my own mind and certainly not by society). I struggle every day to maintain a façade of ‘I’m fine!’ I struggle with my own feelings of selfishness at even the thought that I might consider myself disabled when I am ‘clearly’ capable of looking after others in a demanding environment. I struggle every day with how much harder it is becoming to maintain this façade, with the fear of wondering how long I will continue to be able to do this and what my options might be if I cannot.

I tell myself that just as soon as my medication is returned to its former level I will be able to cope much better, but I find it is not a great comfort. This whole experience has been a terrible shock, a blow, to me, and has in many ways crushed my image of myself as independent and coping well. The truth is I am not coping any more. Maybe the medication issue will resolve the problem: I hope so. But this experience will remain. How long will I be able to convince myself, even in the privacy of my own mind, that I am ‘not disabled’?

None of this is coming out with the eloquence and structure I had intended. It has the feel of an ‘information dump’, but there is nevertheless something very cathartic about the whole process. These are thoughts I have struggled not just to articulate but even to admit to having. I worry every day how my conditions, both the physical and the mental, will affect my ability to do my job. I worry what might happen if people should ‘find out’ about my weakness, the extent of the effect my conditions have (or at least, are having) on me. I am lucky, I realise, to be in a job (or at least, a mode of working) that allows me to control when and (to a certain extent) where I will work. Without this freedom, this flexibility, I could not have been doing this job today: I would have been forced out years ago. I cannot maintain the stamina required for me to work the shift patterns others work, and I feel constant guilt about this. Without my health-related pensions from the RAF I would, I believe, literally be living ‘from hand to mouth’ – which is, I suppose, the reason they were awarded me in the first place. They have literally been life savers.

I’m sorry if I’m rambling. There’s just so much inside me that I haven’t had the courage to even acknowledge, let alone let out, that I find I can’t be any more coherent. The longer I leave it to write about this, the further it gets in my mind, and the less I will remember about the intensity of the experiences. Also, the longer it takes me to write about this, the greater the chance that I simply won’t have the courage to express it at all. I wanted to write better about it. I feel I ought to have presented a much more reasoned, analytical discourse on the whole thing, but when deep emotions are involved how much say do we really have in this? I feel so disappointed in myself, both in my inability to take traveling in my stride (as I once was able to) and in having to admit to myself that I am, indeed, disabled.

I hope to be able to write better about this in the future. It felt more important, in there here and now, however, to just get all this ‘out there’. From continuing experiences in my life I’ve grown to appreciate the importance of sharing my own experiences in the most visceral way I can, in the hopes that it might speak to someone else in my position, let them know they aren’t alone.

If there is no other purpose for these experiences, that might be enough.

The Problem With Giving

I’m guessing I’m not the only person who has trouble accepting gifts. This time of year this issue is raised as at no other, but it isn’t just the season that has me pondering this issue at the moment. I suppose the title of this post is misleading in a way, because it’s not really giving that is the problem, but receiving. People mean well with Christmas (and birthday) gift-giving, but in many ways it has become a burden rather than a pleasure, and a cause of a great deal of stress – and even division. But even that is not the reason I am writing today.

Forget the giver, for the moment – I want to concentrate on the recipient. Specifically I want to concentrate on the recipient of a gift that is nothing to do with Christmas or any other set time. I am in the process of buying a house at the moment. Thanks to years of being not-very-good (an understatement) with money and struggling to clear long-standing credit card debts, I did not have very much saved, so was helped with my deposit by a close friend. This, apparently, is a very common occurrence these days – the estate agent told us that very few first time buyers they encounter are able to buy without some kind of assistance from others, which made me feel better, but not by much.

I immediately began to negotiate with the person who had helped me for repayment, eager to repay this loan and get it off my conscience (thanks to the aforementioned years of poor money-management and bad choices, you can be sure my conscience in this regard is acutely sensitive). My only thought was to pay them back as quickly as possible.

The trouble is, this individual does not seem at all eager to have me pay it back as quickly as I want to, wanting instead to see me ‘on my feet’ before they will even think of accepting any repayment. This has left me really considering the issue of gifts and our reaction to them: specifically, our immediate desire to repay the gift in kind so as to assuage our consciences and avoid any perceived ‘negative-equity’ situation.

This got me thinking about how disrespectful this attitude is when you really get down to it (though it is considered, in our society at least, a socially respectable attitude to have), and how it completely flies in the face of what a ‘gift’ really means. I have struggled with this for many months now, since my kind and helpful friend first postulated helping me with my house-buying. I have probably been struggling with the idea for much, much longer (I can remember vehemently rejecting my father’s offer to pay the deposit on my car, despite my meagre savings at the time, not realising that my insistence upon financial independence actually hurt his feelings). The problem, I feel, can be boiled down to a single, commonplace saying in our society:

“It is more blessed to give than to receive.”

On the surface of it this is an entirely beneficent saying, designed to offset inherent human selfishness and promote charity. The trouble is we take it too far, so that instead of it being a tenet that encourages sharing and unselfish giving it becomes the start of a heated and often bitter process of argument.

“What did you go and do that for? Why did you spend all that money?” (Subtext: you’ve spent more money on my gift than I can afford to spend on yours, so now you’re making me feel bad.)

“But I haven’t gotten you anything!” (Subtext: Now I’ll have to go out and get you something, otherwise I’ll be eaten up with guilt.)

Particularly at this time of year, we are encouraged to spend money we often don’t have buying things people don’t really want for people who don’t actually need anything (that money can buy, at least). The stresses associated with buying the wrong present – or forgetting a person entirely – are very real for many in our society. That’s because (I believe) we are obsessed with giving to the exclusion of all else – it is more blessed to give than to receive.

All the while forgetting that for something to be given it must be received. For every giver there has to be a receiver. But the equation is simple: giving = good, and unselfish; receiving = bad, and selfish. If we receive a gift and have no gift to give in return, we are made to feel selfish, takers. Even when we argue ‘I didn’t expect anything back!’ many still feel piqued if they give a gift and receive none in return (though most wouldn’t say so aloud).

We’ve lost the art of receiving. Despite what modern Christmas teaches us, the whole point of a gift is that it is something that is one-off, non-repayable. If you ‘pay’ somebody for a gift, whether by reimbursing cash or return giving in kind, it is not a gift, but a transaction. A gift is something that is given without payment, and without any expectation of payment. There’s a growing trend today for ‘paying it forward’ which I like and think could go someway to offsetting this guilt over receiving.

But where does this guilt really come from? Is it just that old bible reference to it being more blessed to give than to receive? Is it a sense that we don’t deserve to be the recipient of a gift, and we have to assuage that feeling of ‘unworthiness’ by immediately paying back the gift? Just why is it so hard to receive something and not instantly want to offset it with our own gift/repayment?

Why do we seem emotionally unable to simply accept a gift, with thanks and a promise to use it wisely? Why do we mentally keep a sort of ledger even with those closest to us, where we keep a detailed note of how much we owe them with the intention of balancing the scales – and where does that motivation come from? Is it simply because we genuinely want to pay back what we have received? Or is it because we feel guilt and inferiority being in somebody’s debt and want to redress the balance? It’s a slippery slope.

If we want to give, but not to receive, does that makes us hypocrites? Because for every giver there must be a receiver. We are willing for someone else to be in the position of debt that many of us perceive when receiving a gift, but not willing to put ourselves in that position? Not that we’d think of it like that: we’d consider we were being ‘unselfish’. But how unselfish is it when some kind of ‘moral superiority’ is involved? We would immediately argue that we don’t give out of any sense of that moral superiority, but is that true? When we are told that giving feels good? If ‘giving feels good (read: unselfish)’, surely the converse is ‘receiving feels bad (read: selfish)’. In this context, how much more ‘blessed’ is giving than receiving?

Of course, if we spend our entire lives taking-taking-taking and never giving, this is bad. But rejecting gifts and always being keen to ‘repay’ them is in its own way just as bad. We really need to reclaim the art of gracious receiving – receiving without any immediate guilt-driven push to repay. People give gifts for a reason: mainly because they want to be of benefit to the person they are giving to.

You enjoy giving . . . so let others enjoy that same feeling. Learn to receive.

It is certainly a challenge.

Do I owe people an explanation?

I often wrestle with this idea: do I owe people an explanation for who I am? Let me elaborate, or rephrase this a little: do I owe people an explanation for why I am the way I am? Do any of us? I’ve wrestled all my life with the question, and until relatively recently I have never been able to provide an explanation even to myself. It’s not nice, really, when you can’t explain your thoughts/feelings/decisions even to yourself. I remember once seeing a clip of the seventh Doctor, Sylvester McCoy, saying: “The more I know me, the less I like me.” That sentiment resonated with me, though it hurts me to say so.

I’ve always struggled to believe I’m a good person. Life hasn’t always borne out this belief: things have happened to me, and I’ve said (and done) stuff that backs up the idea that I’m really not a very good person at all, nor even a very nice one. I know plenty of people will argue against this idea, but there are many who will sympathise because they, too, feel like they’re living a double life. Who people see on the outside isn’t exactly who is there on the inside. To offer another quote (this one from Thousand Foot Krutch’s song Be Somebody): “I’m just the boy inside the man: not exactly who  you think I am.”

I say I have been unable to answer the question of ‘why I am the way I am’ until very recently, and I say this for a reason. I may have to come to it in a roundabout fashion, as so far I have not told many people at all, and doing so in a public way like this scares the hell out of me.

Most of my life (as I think I may have previously mentioned) I have felt like I don’t fit in anywhere, into any scheme or paradigm or work or leisure situation: or else I feel like I fit for a while, then something happens to once again make me feel alien, apart, separate . . .

. . . weird. Yes, I’ve always felt that. I guess most people feel out of place at some time or another, but I’ve felt it just about all the time. As if parts of me fit in so many different places and situations there can never be a moment when I just feel whole, like I fit with every piece of the jigsaw around me.

My diagnosis of anxiety and depression back in 2013 went a long way towards filling in the blanks of my sense of disconnect: primarily my emotional issues, ups and downs, and reactions in certain situations. It didn’t fill in the whole picture, however. It wasn’t until a conversation with a work colleague on a night shift a year or two ago that the final piece of the puzzle started to become clear. We had been talking about several of my . . . issues . . . and how I had never felt like I understood the world that most of the people around me were living in, and she asked me if I had ever been told I was autistic.

As soon as she said the word, something clicked inside me, and it felt immediately like I had a connection with this word: autistic. I said that was very interesting, I had never been told so, but as soon as she mentioned it, it felt like this might be the breakthrough realisation I had been waiting for all these years.

It wasn’t until many months later, watching Professor Tony Attwood lecture on autism in females, and subsequently reading the book Aspergirls: Empowering Females With Asperger Syndrome by Rudy Simone that I finally began to see myself reflected in others. The experience was so profound – and so deeply relieving – I cried. At last here was somebody describing my experience of life, and I finally had a name for what had been bothering me all these years. I wasn’t ‘weird’, I wasn’t crazy: I was just autistic.

We face much opposition in this regard in exactly the same way that those of us with invisible disabilities do. The public has a preconceived notion of what ‘autistic’ looks like – ‘and it doesn’t look like you, thank you very much’. The image of some Rainman-esque figure locked away from the world interacting only very rarely and totally unable to engage with the people around them – in other words, the most severe end of what is known as the Autism Spectrum. ‘You live a ‘normal’ life, have been to university, hold a job – sorry, you can’t be autistic, I’m afraid. Everybody knows people with autism need full-time care, and I think I would know if you were autistic.’

Here’s a secret for you: a lot of people who are autistic don’t know it. Women in particular are being diagnosed in their thirties, forties, and even up as far as their eighties. Many more are never ‘formally’ diagnosed (getting a diagnosis as an adult, particularly an adult female, is beyond hard, as so few professionals are trained in the signs and symptoms as they present in females, or adults in general), but take immense comfort in knowing what they are and finally being at peace with themselves.

Here are just a few of the facts about females with autism, taken from Tony Attwood’s seminal lecture on the subject – facts that just happen to explain me and my experience of life:

• One of the characteristics of Aspergers is escaping into an imaginary world (fiction) where you are valued and understood

• Many Asperger females develop a talent for languages and speak in other languages without expressing their native accent

• Where boy Aspergers will become upset and blow up (and be referred to a doctor), girls will become very apologetic and seek to appease (so they are not referred)
• When put in threatening situations, boys will become oppositional defiant (won’t do as they’re told) whereas girls will not let on and simply ‘cope’, or will become a chameleon and adopt a persona to fit the situation

• Mask in public, but will melt down the second she is out of the situation
• Aspie is someone who has found something more interesting in life than socialising, but they live with social zealots
• High levels of anxiety, so you impose routines and rituals
• Many Asperger girls escape into fiction – reading it, writing it – and become successful authors
• The ‘real you’ must be hidden because they may not like the ‘real you’
• If you continue to use a ‘fake persona’ it will become depressing and exhausting because it takes so much energy, and you will feel that the ‘real me’ is so despicable you have to hide it
• Those with Aspergers very good at worrying (high levels of anxiety disorders)
• Depression because of the exhaustion of trying to socialise
• Tendency to catastrophise your emotions
• Not knowing how to do ‘girl things’: being a tomboy
• Preferring gender-neutral clothing: preferring to wear boys’ clothing

Professor Attwood goes on to say that Aspie females are very over-represented in the world of writing (escaping into fiction) and in healthcare (they are very empathetic, thorough and, he suggests, make great GPs due to their immense factual knowledge). Anyone who really knows me will recognise a lot of the above points in me. So many of them are so ‘me’ it almost brings me to tears.

It’s not an easy thing, to confess that you are autistic, for much the same reasons it isn’t easy to admit to mental illnesses or physical disabilities. We live in a society that is primed to reject people who display anything less than ‘the norm’ on the basis that they will be/are unable to cope with work and will therefore become a burden to an organisation. ‘How can we employs someone who is autistic? We will never know what they are going to do next.’ You could replace autistic in this sentence with any mental illness, which goes a long way to explaining why a lot of people hide it from their employers, or even their friends.

Despite it being hard to admit to the world that I am autistic, I do feel like I owe some kind of explanation – primarily to those who bear the brunt of my meltdowns: my friends in choir. I don’t know if it’s because I expend all of my energy controlling myself at work (and so have nothing left for anything else) or because I feel so comfortable with them I am more able to let go and ‘be myself’ I don’t know, but they always seem to be on the receiving end of my more memorable outbursts. Maybe it’s because they are so understanding, even without knowing the cause of my distress.

Or maybe it’s because, unlike in a working environment, I don’t feel I’m in danger of losing my job if I slip up or have a meltdown. Having done this last in areas as diverse (and potentially scary) as the pharmacy counter at my local doctor’s and the security channel at Heathrow Airport, I can testify it can be a terrifying experience that makes you question both your own sanity and others’ perception of it. I often worry that people think I’m ‘crazy’ because of my behaviour during a meltdown.

And I know I only have the thin end of the wedge. People have died before now having meltdowns in public simply because those around them didn’t recognise it for what it was and treated them as dangerous (a woman was once shot – and killed – by police whilst having a meltdown because they thought she was a threat). At least I can function in the world, though I do often struggle (more often than I dare to admit) and have become very adept at disguising it: many are not so lucky. Many are simply unable to hide their difficulty, or are unable to function in public at all.

I don’t expect everyone even in my circle of friends to read this: but those that do will be the ones who truly care for me, and hopefully it will help them to understand me better. Especially when I inadvertently (if inevitably . . .) ‘go Aspie’ on them.

Sorry if this has been a bit of a ramble: I wanted to get this all out in the open before I bottle it and delete the whole thing!

As always: thanks for reading.

(And yes, I am aware that ‘Asperger Syndrome’ is not a term used medically today in the DSM, but ‘Autism Spectrum Disorder Level One Without Intellectual and Language Impairment’ is just too much of a damned mouthful. We’re Aspies: get used to it.)

This is why I should never make resolutions . . .

A couple of weeks ago I began opening up about the evolution of my journey as a Christian, boldly promising to take the story forward every week between now and Easter . . . Well, as you can see, I muffed that one at the first hurdle. It isn’t that I don’t intend to talk more about that journey: just that circumstances beyond my control dictate when I can write, and what I’m motivated to write about.

I’ve blogged a bit before about my anxiety and depression. These, coupled with the fact that I’m both an introvert and (I have recently discovered) highly likely autistic (Asperger’s) mean that I’m very much a slave to my motivation and energy levels. I think I’ve mentioned that before, too, that when I’ve got tons of great ideas for writing I don’t have the time to pursue them, and when I have the time I’m out of ideas.

A lot’s been going on lately, too. I recently (4 weeks ago) took my Grade 5 Theory of Music exam (musicians in the UK or using the ABRSM system will know that Grade 5 Theory is a prerequisite to pursuing Grade 6 + above practical subjects), and found out this week that I passed with a distinction. Yay! Good going. However, my stepmother was also in hospital this week, in an ongoing saga with her worsening Crohn’s disease (she is waiting for an operation to remove part of her small bowel, which we are hoping will give her some semblance of her normal life back: she hasn’t been able to eat properly since last summer), my energy levels have been up and down like a yo-yo, and to top it off I’m currently in the process of saving to buy a house later this year and have been having issues negotiating appropriate contract renewal with my rental company in the meantime.

Funnily, however, most of the time I don’t feel like I’m doing an awful lot . . . at least, not an awful lot productive. There’s a novel to be worked on, after all (though not the one I was originally planning to be my first), and what feels like no time at all to do it. I’m aware that this is the anxiety talking, but it doesn’t change the fact that there have been days with an awful lot of a time window available when I’ve lacked any energy or motivation to even get up off my arse, let alone write. Depression talking, those days.

I’m very good at beating myself up about how I’m not doing what I should be doing, yadayadayada, which does my mental health no good whatsoever. As my friend Sarah pointed out the other day (after a particularly public and embarrassing meltdown) I have an awful lot going on, even if I don’t feel like that’s the case (I’m constantly comparing myself to others, after all, whom I consider have much more to deal with . . .) What I don’t have currently, however, is any outlet for all these feelings.

You see, being who (and what) I am (i.e. anxious, introvert, autistic), making friends close enough to sufficiently open up to is not easy. It takes a long time for me to even build up the confidence to talk to people I don’t already know, a long time to become comfortable enough to open up – and it’s almost impossible for me to approach even a close friend to ask for help. I’m more of the one ready to help with their problems, and often feel like admitting I need help with my own is selfish. I feel (wrongly or rightly) that I have a tendency to monopolise a conversation once I start talking about my issues (once I start, I can’t seem to stop). Maybe this is also something that keeps me silent.

Like many introverts (I think a lot of anxious/depressive/autistic people fall under this umbrella), I feel much more comfortable opening up online, where I don’t have to sit ‘face to face’ with someone and can take my time to express my feeling in writing. It doesn’t take the place of real, live, heart-to-heart conversation, though – doesn’t take the place of crying your heart out and feeling somebody else’s empathy for you.

Even then, something in me is always telling me I’m selfish for burdening them with my tears when they no doubt have much more serious problems I could be helping them with instead of bawling away. Illogical, I know. Plain wrong, I know. Doesn’t change the feeling. Doesn’t make it go away. Sometimes I wonder if it will ever go away.

It gets so frustrating, feeling like I’m never making any progress. Then some days I’m uplifted, positive, and feel good about my life. I wish it would just be an even keel. All I want is a simple life, but it seems like almost everything transpires to make my life complicated. For the most part I enjoy my job, but I don’t enjoy the way it exhausts me mentally, emotionally, physically.

I get days when I love my job, and really feel I’m making a difference to my patients and my colleagues. Then there are days when I wish with all my heart I never had to set foot into a hospital ever again. There are times I look at the future and it just seems to stretch endlessly in front of me, bleak and exhausting.

Same with the writing. There are days I feel enthused, when I read what I’m writing and feel I really have something good to contribute. Then there are days when I wonder why I bother, why anyone will ever want to read what I write when surely there are a million others who can say it better.

Then I remind myself that perhaps that’s true: maybe there a million others who can . . . but they won’t. Stephen King one said ‘talent is cheaper than table salt’. It’s not talent that makes people successful at anything (whether it be running a business or any artistic pursuit), but perseverance. ‘Hard work beats talent when talent doesn’t work hard’ and all. I remind myself that all this I’m going through will help tremendously with the writing, will help make my characters deep and real and sympathetic.

And I keep writing, and pushing down that voice that tells me I’m being selfish, that I’m unreliable for telling people I’ll write something on schedule and then not delivering. This isn’t a race, and I can’t force myself to write where my heart isn’t at at that moment.

I do intend to share more about my journey, in the future. But this is where I’m at in the now.

It’ll have to be enough.

 

My journey, Step One: early childhood

Let’s get one thing straight: I was never ‘brainwashed’ into becoming a Christian. Hell, I didn’t even come from a ‘Christian’ household, insofar as my parents may have been nominally ‘Christian’, but never went to church, had no obvious personal faith, and never talked about God. Yup,  you read it right, neither of my parents ever went to church when I was a kid, and they certainly never took me.

Yet, I attended Sunday School . . . a fact which had often puzzled me as an adult, until one day I asked my dad the question: “Why, if you never went to church, did I go to Sunday School?”

His answer quite blew me away: “Because you asked.”

I was four years old at the time. Four. And I asked my parents if I could go to Sunday School. Freaky. Fortunately, though they weren’t believers, neither of my parents were any more restrictive with regards to religion than they were to dress codes (for the record, I have always been a tomboy, at my happiest in shorts/tracksuit bottoms/jeans and a t-shirt/jumper: ask my stepmother how frustrated they were with my palette as a teenager (all those black t-shirts…))

So, I went to Sunday School. Growing up in the small village of Camblesforth, near Selby, North Yorkshire, there wasn’t a great deal of choice with regards to ‘which one’: there was only one. Though baptised (at the age of 5 months) into the Church of England, I attended Methodist Sunday School at Camblesforth Wesleyan Chapel.

For those of you unfamiliar with Methodist history: ‘Wesleyan’ is an old name for Methodists, after their founders John and Charles Wesley. I still have a fondness for Methodist churches today: I especially respect their plainness, lack of ostentation and down-to-earth theology/philosophy. I also credit my years in Methodist Sunday School (combined with school assemblies at Camblesforth County Primary School) with establishing in me a deep love of music – especially worship music (music is one of the things for which Methodism is famous, partly because the founders were so musical themselves: the Wesleys were famous hymn writers).

I can’t say I was an especially devout child. I certainly never had any ‘Damascus road’ moments (and I can say to this day I still haven’t), and (as was the custom in those days) never actually attended Sunday services themselves. Apart from Sunday School (and the music), the only contact I had with church came through the Brownie Guides, with whom I paraded in Selby Abbey every St George’s Day from the age of seven and attended Christingle services in the same chapel where I had attended Sunday School. I have very strong memories of that space lit only by candles stuck into oranges (even now the smell of candlewax transports me immediately back to childhood…), and a long line of girls in Brownie uniforms moving through the candlelight dimness of the chapel, up one aisle, through the front porch, and down the other aisle. From Sunday School itself I recall only two things: playing the angel Gabriel in a nativity (little bit of genderbending there, as Gabriel is supposed to be a boy), and sitting beneath the old upright piano, where if you poked at the keys from beneath they would sound on the strings (early obsession with the piano surfacing there…)

To this day, most of the songs I remember well from my childhood were hymns, none of which I can hear or play today without feeling tremendously nostalgic: Colours of Day; All Things Bright and Beautiful; Who Put the Colours in the Rainbow; One More Step Along the World I Go; Give Me Oil In My Lamp, Keep Me Burning; When I Needed a Neighbour; The Ink Is Black, The Page Is White and, of course, the old favourite I Danced In the Morning (Lord of the Dance). My favourite by far, however (perhaps reflecting my strong imagination even then) was the fantastical (and not very theological!) When a Knight Won His Spurs. As English a hymn as you could ever imagine, I think.

So, what have I learned from reflecting on my early days as a Christian? Well, I think the foremost thing is that when God wants us, He calls us wherever we are and however old we are, regardless of how ‘religious’ our family might be (it is a grave mistake to think that all Christians come from Christian homes and families: many come to God with no outside influence at all). Things were pleasant back then, but it wasn’t to last (how can you ever think things will last around teenagers, for goodness sake?) Nevertheless, I have wonderful, warm memories of this time, and it has been a great comfort to me at many times in my life to know that God had His hand on my life (and my heart) even at so young an age.

Regardless of what my ‘teenage self’ would get up to…but I’ll come to that next week.

Vulnerability, veracity and division: sharing our stories

I called this blog ‘Welcome To My World’ for a reason. Part of that reason is because I have always felt that my experience of the world – my experience of life – was not what other people’s was, and I wanted to share a bit of that. Other reasons included having read others’ brutally honest, soul-searching posts and been moved by their vulnerability, their honesty.

I have not always, I fear, lived up to the standards of honesty I originally set out to emulate. There is after all an awful lot of judgment out there, and making yourself vulnerable can open you up to all sorts of abuse. With everything that’s been going on in the world these past months, however, I’m coming to feel that such honesty is something we’ve been sorely lacking.

If the political events of the last year or so have shown us anything, it is that there is far more division amongst us than we ever realised. When people you had known for years and counted as friends come out with comments and opinions that go against everything you have ever believed – and especially, against everything you had ever thought about them – you know that our worlds have been lacking that honesty.

It’s not that anybody meant to lie. In fact, it’s not even than anybody actually did lie. It’s just that I’m coming to realise that all of us make assumptions about those around us based upon what we ourselves believe, in the absence of any other evidence to what their thoughts and/or opinions are.

In other words: we none of us disclose much about our innermost feelings, just sort of expect others to understand and agree with them, and are therefore upset when it transpires that they do not. I don’t want to lose any friendships over this, and I do believe that honesty – transparency – is very, very important. Surely we can listen to each other’s opinions without necessarily holding to them ourselves?

Which brings me back to why I originally started this blog, and how I feel I have failed to live up to my initial ideas. You see, vulnerability is hard. It’s hard to tell a bunch of strangers the innermost secrets about how you are and what makes you tick. There’s a lot of fear involved: fear of judgment, of reprisal, of rejection. Yet where would we be – where would I be – if it weren’t for the bravery of others in risking that vulnerability?

As this is Lent, I got to thinking about my own development as a Christian, and about how little most of my friends know about it. I have always been reluctant to discuss my faith, not because I’m embarrassed about it, but because it is something very personal to me. Plus, you know, I know that not everybody agrees with people having faith, and I don’t like arguments or confrontation. I’m not good at them, and I’m not an apologist. I think faith is like that for a lot of us, something that we can’t articulate (like love), but that we feel so deeply we simply can’t imagine our lives without it.

I admit it: I’m afraid that talking about my faith, letting people know how it happened (or at least, letting people who themselves don’t share my faith – or any faith at all – know it) will make me a target for the aforementioned judgment and reprisals. It was ever thus. There is so much division in the world right now, some of it engendered by those who themselves profess to faith (and therefore ought to know better), that I don’t think any of us can afford to be silent – to be fearful – anymore.

So, coming back to the twin themes of Lent and my own journey of faith. I thought that this should be the time to open up about how I became a Christian, the developments I’ve been through in my journey, how they’ve shaped my life and how they’ve brought me to the person I am today.

So: cue the vulnerability. Every week between now and Easter, I’m going to take a section of my Christian journey, starting in early childhood up to the present day, and talk about it. Whether anyone will want to read it, I don’t know, but hey: that’s a risk all bloggers take, isn’t it? It’s a mistake to think we know what people think, feel, or believe based on a limited amount of knowledge, and if there’s one thing I’ve learned in my life, it’s to expect the unexpected.

Lent is about journeys: I offer you mine.

Anxiety, again

It’s a weird experience, having an anxiety attack, and while it lasts, it is a most shameful feeling. Now, don’t get me wrong – I’m not saying I’m ashamed to have them (though for a long time that was the case), but that whilst they’re happening, I feel deeply ashamed. It’s something that’s been preying on my mind for quite some time, though, and I thought that I would try to put some of it into words, so that it may help people to notice when I’m having one, and let them know what they should do.

The anxiety attacks I’m talking about aren’t the same as ‘panic attacks’, though at one time, before I’d gotten CBT treatment, they might have escalated into one. They can come seemingly out of nowhere, have you in their grip for a certain amount of time, then just up and leave just as quickly as they came. It’s literally like somebody has flipped a switch inside you, it’s that quick, and when it’s gone, it leaves you terribly embarrassed about what the people around you thought.

As I think I’ve mentioned before, I have always had quite crippling issues with self-confidence. When an anxiety attack is in full swing, this is the area that is most directly targeted, leaving me with a list of thoughts/feelings that are present just about every time. They include:

– Inadequacy – Feeling like everyone is watching and judging you – Feeling stupid – Intense dislike of having people near – Desire to run away – Thinking ‘it was a bad idea coming here, I knew I shouldn’t have come, I’m never going to make it, I should just pull out and quit, I wasn’t made for this/meant to be here’ – Intense emotionality, crying – Feeling overwhelmed by everything around you

When it’s over, there’s always a feeling of relief, but there’s also an overwhelming urge to apologise for ‘making a scene’. Whilst it’s happening, I’m always very acutely aware that I’m ‘making a bad impression’, and am always worrying about what people are thinking.

The odd thing is, I can’t predict when these attacks will occur – areas or situations where you’d think they would, I rarely have any trouble with, and they seem to occur (often repeatedly) in places/situations that you would think would never trigger anxiety. For example, I rarely have these attacks at work, and when I do, it is only at times when the unit/ward is extremely busy and we are all extremely stressed and on edge (which is, perhaps, perfectly understandable).

What’s prompted me to talk about it now is that I’ve recently started a language course at university (a part-time evening class) to improve my French. There’s no pressure – I’m not on an ‘exam route’, there are no official tests or exams, and I’m just doing it for pleasure – so you would think I could just kick back and have fun, right?

Wrong. I don’t know what it is about this situation or set up, but it brings out my anxiety big time (I started a similar course a couple of years ago, that one in Russian, and had exactly the same experience with anxiety on it: so badly so that I had to withdraw, although that was partly due to the fact I felt completely out of my depth with the Russian and it was just too stressful). I can go into the class feeling fine, but at some point the anxiety will surface out of nowhere, and that’s it: it’s on me until it chooses to let me go. I’ve got no say in the matter.

The most frustrating thing is that I can’t put my finger on exactly what triggers it. I can feel fine one minute, and the next I’m on the verge of tears, convinced that even coming here was a bad idea, and that I should just get out and not come back. That I’m useless at this, will never be able to do it, and shouldn’t even try. Now you tell me where that comes from? ‘cos I haven’t got a clue. Why always here, in this situation (i.e. a language class), instead of one you’d think would be tons more stressful?

I haven’t got any answers, but I can at least give pointers to recognising when this is happening to me.

1. I’m likely to be flushed, visibly flustered, and probably sweating.
2. I’ll probably be fretting at something, picking at my nails, biting them, fidgeting with pens or whatever else comes to hand.
3. I’ll probably either be crying, or trying obviously not to.
4. I might be muttering to myself under my breath (usually telling myself what a terrible failure I am for letting this happen to me again, and calling myself a lot of very nasty names).
5. If I’m in a situation where I’m expected to be feeding back/interacting (e.g. in a classroom setting), I will be extremely adverse to doing so (to the point whereby, if you do push me to interact, I’m likely to lose control and go into a full-blown panic attack – or at least, I’ll be feeling like I will).
6. If it’s in the early stages, I might seem to be getting very irascible and/or argumentative.
7. I will probably have my head down, and will avoid even looking at someone, let alone making eye contact.

I might mutter something about ‘sorry, it’s just the anxiety’ – but then I might just suffer in silence, never offering up an explanation for my behaviour (whilst all the while becoming more and more convinced that everyone thinks I’m crazy). Here’s what, in my case, you should do.

1. Don’t simply ignore me – that will feed into my feelings of uselessness and have me convinced that nobody notices when there’s something wrong with me and (therefore) that nobody cares.
2. Equally, however, don’t shower me with attention – I hate to feel like I’m the centre of attention at the best of times, and will feel quite exposed enough without that. Simply feeling that people know what’s going on and care about me will be enough: I don’t need to be pampered, I just need space to let the attack run its course.
3. I probably won’t make eye contact with anyone, but if I do, some acknowledgment of sympathy will go a long way: if I should make eye contact and I am obviously distressed, a simple smile (with perhaps a squeeze of the shoulder if you’re near enough) might be enough to make me feel I’m not being judged for my anxiety.
4. Know that there is nothing either of us can do to make the attack simply ‘go away’: it has to run its course, and it will do, probably in no more than ten to twenty minutes.
5. Know that, once the attack has run its course (you will notice this because I will be engaging more with people around me, and talking again), I will be feeling acutely embarrassed by my ‘episode’, even ashamed. I am extremely vulnerable at this point: any criticism or negative comment (even unrelated) may be taken personally (if irrationally). A gesture of support at this time would work miracles.

Having said all this, in all likelihood you will never see me in the midst of an anxiety attack. I can have quiet moods without it being due to anxiety, after all. Since having the CBT, I suffer these attacks less and less, but when the do occur, they are just as intense as ever, though I have noticed I tend to be in more control (at one time, I might simply have bolted), and that the attacks are shorter, the recovery quicker.

I might come across as very moody to some (or maybe that’s just my paranoia and under-confidence talking!), but please know and understand that I often feel like I’m fighting a battle inside myself all the time, convinced that I’m a bad human being and nobody could/should like me. When I have seemed rude or moody, I will be tearing myself to pieces inside berating myself for it: the last thing I need is someone pointing it out. I’m trying to be a good person. I don’t go out to deliberately hurt or insult anyone.

It can feel so terribly lonesome fighting anxiety – especially when, essentially, it’s a fight you never completely win.

And, for the record: I’m determined to stick it out with the French. No matter how many attacks are to come. If I just try to avoid any situations that seem to trigger it, I’ll end up living like a hermit.

Sigh. Why can’t life just be simple?

What Deepwater Horizon has to say about heroes: some thoughts and immediate reflection

(*WARNING: SPOILER ALERT INCLUDED*)

It’s not common to come back from seeing a movie and the first reaction be a compulsive need to write about it. Not for me, at least. I’m not exactly a film junkie – they’re too damned expensive for that, and I’ve got debts to pay – but I do enjoy them. There are few films made these days that truly get to the core of what film-making at its best is all about, what it is really there to do. Most movies seem primarily designed as a diversion – which is okay, in its way, as it’s definitely important to have a release from everyday life and just enjoy something. Very rarely, though, films are made with the pure and sole purpose of telling a powerful story – and nothing is more powerful than telling the story of things that actually happened.

I don’t mean the ‘based on true events’ kind of movies, which are generally based very loosely indeed on ‘reality’, and most often are barely recognizable from the documented ‘original’ source (Amityville Horror, anyone?) You see, movies than genuinely are based on true events, and telling a true story, don’t have to include this caveat. They don’t need to. They speak for themselves.

I just got back from seeing Deepwater Horizon. Just from the preview material I knew it was apt to be incredibly true-to-life, accurate to the most minute of practical details. I did not know just how utterly profoundly the storytelling would work, how well each cast member would do justice to their real-life counterpart, or how much real human dignity and drama would be conveyed.

I tend to dislike ‘action’ movies – I don’t go to see them, and skip hastily past them when channel-surfing on TV. If you like popcorn fodder, that’s fine – diversion is important, I’ve already said. But there’s a reason why action movies don’t tend to have much (if any) emotional depth (I daresay most aficionados and practitioners of the genre would say such is neither needed nor desired, and that’s okay). The reason is, I think, quite simple.

Real people just don’t act like that. They don’t look like that. They don’t talk like that. An example: Terminator: Salvation. A movie set in post-apocalyptic America, when most of mankind has been eliminated and the survivors exist as hunted scavengers in the broken ruins of the world they have created . . .

. . . who just so happen to be well manicured, with long, loose, flowing (and well kept) hair, bright white teeth and artily ‘distressed’ clothing. Really? In a world where the only goal is survival, people are taking great pains to look nice, take care of their hair and brush their teeth? Women are wearing their hair long and loose when to do so would render it tangled in minutes and require hours of attention every day to prevent this? It might seem like a petty thing to comment on, but this is where such movies simply fail to engage the subconscious ‘reality circuits’ of the audience’s brains.

Some might argue audiences aren’t looking for that kind of gritty realism in such escapist fantasy . . . and they might have a point. Except that, on those occasions when you do see things more realistically rendered (the Lord of the Rings films come to mind), the effect is much deeper, more powerful – and so much stronger. The audience might think they don’t need to see their onscreen heroes cleave to this kind of environment-specific realism, but then they don’t realise just exactly how much they are missing by the absence of it. You can’t fully, truly immerse yourself in a story unless it feels real . . . and the mind notices things you will never be consciously aware of. Who knows how much more impact such stories might have had, if such standards had been applied? We will never know.

We don’t need to worry about that with Deepwater Horizon, however. Every brush-stroke, every detail, every turn of the voice and nuance of delivery speaks directly to that subconscious need to connect with a real story . . . and I can’t help but feel that was exactly what cast and crew intended. This was not a Hollywood blockbuster, but an honest-to-gods, straight-to-the-heart drama. You get the feeling they could care less about critics, accolades and Academy Awards (though they will undoubtedly receive plenty of such accolades). You get the feeling that, at the end of the day, the only thing they are or have ever been bothered about is the reaction of – the connection with – the audience.

I will take the standout scene that illustrates this point for me . The final scene of the movie proper, when Mike Williams (played by Mark Wahlberg) receives his family in his hotel room after escaping the burning, sinking rig and being discharged from hospital (the illustration goes even further back, to the arrival of the survivors in the hotel itself, and extends to the reunions with their families). There is no sound, very little (and subtle) music score – and, by the end, absolutely no dialogue. Mike enters his room, looks around still dazed and stunned . . . then loses control. Screaming, he rips off his shirt and, panicked and terrified, falls to the floor shuddering with reaction. He lays there, sobbing hysterically, as his wife enters the room, falls to the floor by his side and holds him. His daughter joins the tableaux, and the two of them comfort him, wordlessly bringing him back to himself, out of his panic and back into the world.

Now, can you imagine this scene as Hollywood might have played it? The long speeches, the soaring, dramatic score, the denouement and wise counsel from the battered but proud and macho hero? Can you imagine how much less of an impact such a scene might have? Because, in real life, people just don’t do that. Real people break down. In real people the dam breaks once the shock wears off, and grown men shudder and sob like broken children.

And this is fine. It is not weakness – it is reality. In reality, people just do not walk away from something like that and hold their heads up ready to make speeches. Real people are messy. Real people are broken. Real people have courage – and this courage is not ‘special’, given to only a special, chosen few, but lives in everyone (or almost so). Heroism in such circumstances is a pure human instinct – not a deliberate choice to ‘play the hero’. In Time for the Stars, Robert Heinlein states: “Ultimate courage is the commonest human virtue, and seven out of ten are Medal of Honor Men, given the circumstances.”

This is what Hollywood – and much of TV – would have you forget. We have a cult of heroes, a fetishism of them, which seeks to set them apart from ‘the rest’ of humanity, mark them as special, different, from the ordinary, run of the mill person. In fact, the opposite is true. Almost every human being has that within them . . . it’s only that most will never realize it, because they will never be in a situation where they would find out. And this is what Deepwater Horizon shows so well. These are ordinary men (and women!), not airbrushed Hollywood darlings or rugged-jawed ‘war heroes’.

In real life, words are not enough. In real life, vulnerability is not just ‘understandable’, but a normal human reaction. This has nothing of the ‘thousand yard stare’ of traumatised veterans, having more in common with the high depression and suicide rates amongst survivors of such trauma (most especially, sadly, amongst those publically lauded for heroism). Making people into heroes – singling them out as such – is a very good way of destroying their lives, of making them relive and relive that which they ultimately just want to forget about. To move on from.

Hollywood Heroes stand and talk.

Real-life heroes fall down and weep.

Honour what they’ve been through, people . . . let them move on.

(Eternal thanks go to the cast and crew of the movie Deepwater Horizon, which included those who served on the rig and lived through the events portrayed. This could be, I believe, the best movie I have ever seen. I can give no higher praise.)