What is a man?

What does it mean to be a man? A pointed question. One that’s likely provoked many an hour of chin-stroking in people far more learned than me. It feels pertinent to me as a carer. Whether other male carers feel the same, I can’t say. I can only say that the question lodges itself in my head from time to time and provokes a good deal of self-analysis.

Recently, I found myself listening to Woman’s Hour on BBC Radio 4. I’m not so narrow-minded as to assume “Ugh, women’s stuff – not for me.”, or that I couldn’t find it interesting, so I didn’t tune out. After a few segments, the programme featured an interview with Jody Day. Ms. Day has founded Gateway Women, and written a book, Rocking The Life Unexpected, both of which were inspired by her search for support whilst grieving at the realisation that she will never have children. I listened to her story and how she described her feelings and experiences as a woman at the time her peers were becoming mothers. She recalled feeling at odds with people around her, as though she was viewed with a little suspicion. Perhaps she wasn’t fulfilling the stereotypical role of “woman as nurturer/carer”. This caused my pointed question to lodge itself once again.

Ms. Day’s story touched a couple of raw nerves. 1. I am a carer. 2. I have no children and won’t be having any.

If a woman’s role in life is to be nurturer/carer (I don’t believe this to be true, by the way, but please bear with me for the sake of this post), then what role does a man have? What’s the male stereotype? Provider? Hunter/gatherer? And do I fulfil that role? While I see this stereotype to be as outmoded as the idea of a woman’s sole role to be a nurturer/carer, it doesn’t stop me from questioning my place in the world. A feeling similar to that described by Ms. Day. I sometimes wonder how people view me because of what I do for MW. I suppose it shouldn’t matter but it does. It’s important to me to feel like I fit in somewhere.

I grew up in a shipbuilding area during the 70s/80s. The “hunter/gatherer” stereotype was everywhere you looked; originating at home, and reinforced at school or with friends. Add the same messages from the media and you have a powerful influence around you. When I was a kid, I assumed this was the stereotype to follow. When I began my working life (albeit not in industry) and started having relationships, I still assumed that I would be the ‘hunter/gatherer’ – especially when I thought about marriage and a family in my future (more on this later). I didn’t foresee that the ‘role’ I would have in my 40s would be so different from that stereotype.

Prior to being a carer, I didn’t know a single male carer. None whatever. Of course, I do now. I’ve met quite a few, either in person or via Twitter. But prior to 2005, I had no concept of what it entailed to be a man who is a carer. It was a cultural role that never existed for me to learn about. It’s very rarely, if ever, covered in the media. I know there are occasional media references to men who are carers but their role in the cultural world around us is never explained. It’s as though they’ve just beamed down and started caring. I didn’t get beamed down. I’ve been through (and am still going through) a self-examination in terms of who I am as a man, similar to Ms. Day’s self-examination as a woman. I’m not the “provider” that I expected to be. I’m not going to go into detail about our financial affairs but our circumstances dictate that MW’s share of the household income is higher than mine. I am a full-time carer. A role that doesn’t appear to be valued too highly, regardless of gender. I am a male, full-time carer. I have assumed the nurturer/carer role that society appears to deem only suitable to women. Even anthropologists are making inferences to the size of caring males’ testicles!! (Don’t believe everything you read!) When I tell someone I’m a full-time carer, the reply tends to start with, “Oh…..”, followed by a pregnant pause. They’ve no frame of reference for meeting someone who has that role by circumstance rather than by choice, as a care-worker might. It’s as though what I do – and by extension, who I am – isn’t “natural”. I might as well be an alien, or a talking animal. So, what does this make me in the eyes of other people?

The second raw nerve was about children. The Women’s Hour interview continued, and referred to women who find themselves childless by circumstance. (That is, they’ve not actively chosen to be child-free.) This is a truth I’ve had to come to terms with myself. I don’t have any children, and I’m not going to have any. Both Ms. Day and the interviewer acknowledged that there are a number of men who find themselves childless but their experiences are different. She’s right. But it’s no less hard to come to terms with. Just as I’m not a carer through choice but by circumstance, so I’m childless in the same way. MW and I wanted to have a family. We tried for ages but it didn’t happen. Abortion has been part of both our lives so we assumed that there was no biological issue. We considered IVF. However, at that time, our energy was taken up coping with my Dad’s illness. MW’s symptoms began very soon after Dad died. The severity of MW’s initial MS relapse put a stop to our dreams at the time, and its ever-debilitating progressiveness has done the rest. Although we both know what the reality of the situation is, we don’t discuss it often, save for brief “I wish we could have been parents” conversations, prompted by a TV programme or seeing a cute child when we’re out. But these conversations never last long. Rationally, I realise that caring for MW is too demanding to consider adoption or fostering. But I feel very much unfulfilled as a man – a propagator of my species. The prospect of my genes dying with me leaves a visceral scar.

Meanwhile, all my friends have gone on to become parents. (MW’s friends have tended to be a bit older than her so the dynamic is a little different) Ms Day spoke about how she felt a greater distance from her peers as they all had a common thread that maintains their interaction – i.e. having children. I guess it comes naturally for parents to talk about their children: schooling, growth spurts, etc., even to strangers. Becoming a carer is a great way to lose friends. Not becoming a parent is another. I sometimes sense people my age struggling to talk to me once they ascertain that I don’t have children. It’s as though their entire catalogue of conversation is geared towards their children – either as a conversation starter or as a specialist subject to the exclusion of everything else. Since I don’t have children, it’s assumed I won’t have anything in common with them – which I find strange – so conversation stops. Perhaps I should turn the tables and act awkwardly towards non-carers? No, maybe not.

You might read this and say, “what does it matter what other people think?”. And you would probably make a very valid point. The thing is, I look at myself in the mirror sometimes and wonder how I match up against the archetypal male ideal (which may or may not exist) that society/media would have me measure myself against. I also wonder how other people score me against that same ideal. Not enough to keep me awake nights but I do think about it.

So, what does it mean to be a man? Maybe it’s all just bollocks.

Fear and self-loathing in the North.

I don’t really know where to go with this. But the last two weeks have been difficult to say the least. As I type this post, I can feel the urge to shut the laptop down and not write it. It’s embarrassing to write about. So the question is, why do it? Because I need to let it out. Because I’m tired of bottling it up.

I moved house two weeks ago, which isn’t an easy task. When you’re solely responsible for moving the lives of two people, it’s harder. There’s no-one to share the load with. I’ve organised everything: the new house itself, dealing with the housing association, removals, the packing, getting social services on-side, organising a new care team, new equipment, dealing with the old landlord (of which more, later), swap-over of domestic services, address changes….the list is a long one but it’s all been down to me. That’s just the way of things – it couldn’t have been any other way.

I’ve felt my stress levels rising rapidly (I can’t even write those words without feeling sneers of disapproval – don’t ask why or from who/where – I just do). I’ve been lucky insofar as I’ve had my Mum staying with us to help with the practical things.

It got to the point that, on moving day, I was sick of hearing my name and having someone “need” to have my input or approval. I was travelling between the new house and the old, overseeing everything the movers were doing, dealing with signing the agreements, everything. And in the quiet minutes, being a carer. And in the tiny cracks of time between that, being a husband – rather, trying to be. The panic attack I had should have sounded a warning bell but I had to keep going.

We’d been in the house three days when I was involved in a car accident. It’s in the hands of the insurers now which feels to me a little like it’s sub judice. Everyone involved was OK and MW wasn’t in the car at the time. It shook me like hell, and it’s been a grind dealing with insurers, garages, solicitors, the police. It’s something I could have done without. I could tell that I was in a bad way, mentally, but no-one can take over from me.

Another blow came the following day. Our old landlord sent me an e-mail which put me into a spin. He’s sought to keep the bond we left, giving the most flimsy reasons for keeping it and ensuring that we’d need to fight for it by legal means. This, along with the fall-out after the car accident was all I could take. At first, I was just numb. Working on auto-pilot. But, at the beginning of last week, I was in a bad way. Crying all the time. Worrying about everything. Scared of everything. Tired of all the responsibility.

I was thinking things that I’ve thought before and they scared me. I just wanted to say “make sure that MW is looked after” and disappear. I didn’t even know what I meant by that, only that I didn’t feel worthy of being around. I don’t just mean unworthy of being in this place – the new house – at this time. I mean unworthy of being anywhere. That I’d made people worry, that I’d disappointed people. That I’d let everyone down, especially MW.

My Mum was about to go home (to be fair, she’s been here for about two months now) but I had to ask her to stay a little longer. I suspect she could tell by my behaviour that I was in a bad way. Fortunately, she agreed. She’s still here. I don’t know where I’d be if she wasn’t.

I’m tired. I’m not sleeping properly or feel like sleeping half way through the day. I’m still crying but not as much. And I’m still scared. Still fearing the phone ringing, the post arriving, wondering where the next setback’s coming from.

Anyhow, this post’s rambling about with no real focus. Which is pretty much where I’m at right now. Rambling about trying to keep going as best as I can. But it’s a struggle.

Dogma breeds hate

dogma. noun. A principle or set of principles laid down by an authority as incontrovertibly true.

hate. noun. [as modifier] denoting hostile actions motivated by intense dislike or prejudice.

Given the lessons we have been taught by history, surely it’s unthinkable that any government would marginalise a section of people to such an extent that its citizens would openly attack that section of people in public?

Right? Wrong.

I didn’t know whether to blog this or not but there’s too much in my head for a series of tweets. I’d flood my timeline on just this one subject. This week, I’ve come across the tweets of Thomas Hemingford. Mr Hemingford is a man who cares for his disabled wife. I know nothing more about his personal circumstances than what’s written in his Twitter bio but I have read his tweets with a mixture of emotions and thoughts – incredulity, sadness, anger, empathy. Mr Hemingford was out for a meal with his wife and a friend when he and his wife were subjected to a diatribe from a man who Mr Hemingford describes as a “Tory”. He described this verbal attack on both him and his wife in great detail in his tweets which have since been collated via Storify. I urge you to go and read them. For one individual to behave in such a despicable manner doesn’t shock me as much as it should. I’m a realist and am resigned to admit that there will always be people who will attack disabled people – mostly through ignorance or a desire to disguise their own inadequacies as humans. What shocked me more while reading this is the attitudes of the other diners around them. I won’t relay the entire incident here – you can read that in the links above – but attitudes veered from open support to tacit approval signalled by doing nothing during this ‘15 minute’ attack on a disabled woman and her husband and friends.

I wrote above that the attacker was described as a “Tory”. Mr Hemingford’s tweets go on to say that the attacker said he “supported Cameron” and that the onslaught was like listening to the Daily Mail. I talk to a few people who are affected by disability and there are two things that make them angry. One is the current government, and the other is the Daily Mail. The present UK government is bent on cutting huge swathes from the amount spent on public welfare. On the face of it, the thrust behind these welfare cuts is to weed out fraudulent claims but what’s happening is more of an ideologically driven push against the welfare state. To assist in this aim, the Govt. has sought to cast aspersions on the character of those who take money from the welfare state. One phrase from a ministerial speech reads, “where is the fairness…for the shift-worker, leaving home in the dark hours of the early morning, who looks up at the closed blinds of their next-door neighbour sleeping off a life on benefits?”, whilst the Prime Minister speaks of generations languishing “on the dole and dependency”. This is the official line from politicians. Their right-wing supporters in the press will go even further using words like “lazy” and “scrounger” as part of their anti-welfare rhetoric.

This harassment has been extended to disabled people. [quick aside, the phrase “disabled people” feels a bit awkward to me but I don’t have an alternative at present] Disabled people have been portrayed as being freeloaders off the state in the press, in getting “free” cars at taxpayers’ expense**, being more capable than they’d have you believe. The comments sections of any UK paper or periodical that writes about the economy will include responses on how the disabled are a burden to the taxpayer, regardless of the editorial line of the original article. The New Statesman recently published an article about how media coverage of disability and disabled people has become more negative over the last decade and more. It makes interesting but very frustrating reading. Particularly as the coverage seems to have made some people feel “empowered” to openly harangue the disabled, with the relentless stream of invective from parts of the media shaping their opinion. It’s in the papers so it must be true, right?

As MW’s carer, I’m fortunate in that I’ve never witnessed any attack on her. And she’s not reported anything happening whilst she’s been out with anyone else. That’s not to say I’m not paranoid about it. Whenever we’re out I’m always watching the reactions of others towards MW, and us both. On the whole, people are understanding and kind. I have seen some facial expressions which might have belied a less neighbourly attitude but nothing has been said. And certainly nothing on the scale of that suffered by Mr Hemingford and his wife. From his tweets, both he and the friend that accompanied them displayed enormous dignity during and after this attack. I cannot say that I would do the same. I’d rather not have to find out. I’m sure the Hemingfords would have wanted to avoid it too.

I call what happened to Mr & Mrs Hemingford “an attack” and the person who perpetrated it “an attacker” because that exactly what it and he were. They’re as offensive as any other assault on an individual of a discriminatory nature – just because there’s not yet a crime of disability hate doesn’t mean it’s any less of an injustice. If we were discussing a similar attack of a racist or homophobic nature, for example, the attacker would have been dealt with far more harshly by those around him. Since no-one else (bar their friend) made any attempt to defend the Hemingfords, I can only surmise that discrimination against disabled people is acceptable to a significant section of society. That this individual seemed to assume he had implicit support for his views, and his attack, from both the popular press and from the Government of the day makes it more revolting still.

History teaches us that economic difficulty has been a catalyst for authority to behave in an abhorrent manner towards minorities and weaker groups within society for its own end – with appalling results. George Santayana was right, “Those who cannot remember the past are condemned to repeat it”.

We have learned nothing.

** From the Daily Mail – http://www.dailymail.co.uk/news/article-2005576/BMWs-thousands-friends-relatives-disabled-use-luxury-Motability-cars.html – sorry, I won’t link directly to the Daily Mail.

Still going. I don’t know about strong.

Before I carry on I want to clarify something about this blog. Apropos of nothing at all other than something that came to mind which burrowed its way in and won’t go. This is my space to vent – this is my outlet, if you will. I don’t have a wide circle of people that I can talk to at the drop of a hat about what I’m thinking/feeling, etc., so this is my way of letting some of it out. If you’re looking for witty, inspirational writing on how caring is a challenge to conquer, to face with a smile and overcome head-on, and how life is a big bag of love and roses then you’ve come to the wrong blog. I try not to be overly pessimistic but I am realistic. I’m aware that what appears in this blog is pretty dark, even miserable at times. I’m not sorry for that. What’s happening is a struggle and I will reflect that.

I’m feeling a bit stressed at the minute. Which is to say more so than usual. I had another panic attack the other week. Cue thinking I’m having a heart attack; cue frantic call to paramedic then ECG and blood pressure tests; cue calling neighbour to come round to sit with MW if should need to go to hospital; cue feeling utterly ridiculous, hopeless and pathetic, especially when the physical diagnostic tests came back all clear. I have high self standards. Those standards tell me that I ought to be able to cope with everything thrown at both of us because, outwardly, I’m the healthier of the two of us. Even using the word “stressed” makes me feel feeble. My mind and body tells me that isn’t true. When I say I’m a “bit stressed” I must admit that I’m more than a “bit” stressed. I’m stressed to the point of my body giving me messages to rein it in a bit and calm the fuck down. But it’s easier said (or thought) than done. When I list it all, I guess I’ve got a fair bit to worry about.

I’m stressed about MW’s constant deterioration. She can’t move her legs voluntarily at all now. The only movement comes with spasm – so her legs have to be manipulated to ensure proper blood flow. Her arms are losing strength but gaining ever more tremor – sorry, fasciculation (must be accurate). Independent feeding and drinking are becoming more difficult. She’s allergic to the morphine patches she’s just started – not to the morphine but to the adhesive patch. They make her skin blister. The MS nurse tells me that it’s important to maintain skin integrity because sores and patches of skin inflammation will make her MS symptoms worse. And then there’s the blood clot. The injections are nearly at an end but we’re in contact with so many medical people that I’ve asked if they do a health equivalent of frequent flyer miles. Or at the very least Nectar points.

MW’s father is ill as well. Her parents live at the other end of the country from us so we can’t see how he is at first hand. MW hasn’t seen her Dad for almost two years. Not that they don’t get on – they do. It’s just that the distance between them and their respective health difficulties has made it pretty much impossible for them to see each other. Her Dad has a form of leukaemia and he’s been suffering with some symptoms recently which has laid him pretty low. These may or may not be connected to the leukaemia but her Mum is worried enough to not feel confident enough to come up and see us. It’s been almost six months since she visited us. MW’s parents are both in their 70s now so their good health can’t be taken for granted. The thought is always in the back of her mind that her parents won’t be around forever. It’s a struggle trying to keep MW from worrying because it will make her MS symptoms worse.

I’m also worried whether the money we have coming in will stretch far enough. I know I’m not alone in this. But MW has developed a penchant for buying clothes that she doesn’t need just because they’re pretty. Thing is, her memory and mental acuity are worsening and she forgets what she’s bought. She goes out with a carer a couple of times a week and when she gets back she’s laden with little carrier bags. None of the items are expensive individually but it all adds up. It falls to me to ensure that what we have coming in will cover everything going out plus be able to eat. We don’t have a hedonistic lifestyle, neither of us drink or smoke, but we want to be able to live rather than exist. Frankly, it’s a struggle. I’ve asked her repeatedly not to do it. I’ve got angry. I’ve pleaded. I’ve spoken to her rationally because she’s not a child. Yet she forgets. I’m having to slowly realise that she’s losing these abilities, and that she is, in a way, becoming more child-like. I don’t want to treat her like she’s six and give her “pocket money”. Maybe I’m just waking up to the fact that this is another irreversible change in her personality caused by those damn sheep in her brain (on an MRI scan MS lesions are little white blobs which MW called “sheep”). Whatever the “cause”, it’s another tiny chink in the relationship.

In short, I feel like I’m being closed in from all sides and struggling to keep my head above water. I spend a lot of time inside my own head – if that makes any kind of sense – trying to make sense of everything and remain sane throughout. I try to second guess MW’s MS so its effects are managed as best as possible. I try to ensure that we both are as comfortable as we can be given the circumstances we’re in. I feel myself getting angry and frustrated on a more frequent basis. Somebody used the word “inspirational” to me the other day but I genuinely, genuinely cannot fathom why. I know it was meant as a compliment, and I am flattered. But when I look at what’s happening to me and how I’m dealing with everything, that is the last word I would use about me. I’m just trying to do the best I can and it ain’t easy.

As I wrote in the first paragraph, I know this blog can be a bit grim. I’m not going to apologise for that. I don’t spill all this out on Twitter because people would soon get sick of it. I’d rather get it all out on here – this is my blog, for my own benefit because, without it, I’d be in a much worse place.

Hiding in a plain site.

Recently I was approached to take part in a radio programme on MS and caring which is planned to be broadcast on a regional station sometime in the near future.

A producer had come across this blog and had wondered if I’d like to give my account of having MS in my life and being a carer. I must admit that it was a tempting offer. Perhaps I might get the opportunity to debunk a few myths about MS and disability? I might also get to tell the story of being a carer. About how, for me, they are full time responsibilities – more than full time. Maybe I could redress the iniquity felt by carers when faced with the dreadful press we get from various corners of the media. It was an appealing idea but it didn’t take me long to decline it.

Why? Because while I’m happy to write about how being a carer affects me – and that’s what this blog is – I’m not prepared to concede control over what comes out about MW. If she decides to say something herself, that’s fine. But it won’t come from me.

While I’ve given a little information out about me – and us – I like being able to hide behind the anonymity an on-line blog gives me. I may change my mind in the future but this is how I feel now. If I was going to participate meaningfully in a radio programme, it would have been ludicrous to say “I’m not going to answer such and such a question” or “I’m not prepared to tell you that about me”. Particularly if I wanted to give a full and honest account of life as a carer, which it merits.

I’m also wary of people’s reaction to what I write. It’s a little scary putting your head above the parapet and opening yourself up to the opinions of others. I’m not going to pretend that everything’s a bed of roses in life, and sometimes I’ll want to write something that’s critical of the life I find myself/ourselves in, or even critical of MW. I have a lot of thoughts born of frustration and this blog allows me to vent those thoughts. And sometimes the subjects I don’t write about are the ones that affect me most deeply.

I’ve also become aware that, very occasionally, people will project their perceptions or assumptions of my character onto me, which have been mostly positive but don’t take into account that this blog describes what happens to me. It doesn’t give the full picture of who I am. I’m not naïve, I can imagine the stick I’d get if those people were to think that the real me doesn’t stack up to their perceptions. I’m as sensitive to criticism as anyone. More so – I don’t have a very thick skin. Right now, I don’t think I could handle the grief that might come from exposing everything about me and my life on a radio programme.