
On the surface, I might seem calm. But deep down, sometimes I’m scared as hell.

On the surface, I might seem calm. But deep down, sometimes I’m scared as hell.

I’m not known for giving opinion on this blog. It’s usually more of an outlet for what’s swirling about in my head. But we have the Paralympics taking place in London right now and I’ve been interested in public reaction to people with disabilities; reaction to the achievements at the Paralympics, media coverage of those Games and to disability in general – including opinions from social media, and the potential reaction of UK Government to it all given their programme of welfare reform.
Prior to the Paralympics, certain strands of the media have taken great delight in portraying all disabled people as “the shirking classes” ¹. Now the Games have begun, the position has shifted slightly towards “Aren’t the Paralympics proof that even the most physically challenged can achieve awesome feats?” ² – with emphasis on “most physically challenged”. I’m not going to link to these examples because I don’t want to drive traffic to their sites. As you can guess, I disagree very strongly with both viewpoints.
Since the start of the Paralympic Games, I’ve lost count of the number of occasions I’ve seen sentiments written on Twitter along the lines of the second example above. Hashtags such as “#anythingispossible” are, I imagine, well-meaning and innocent on the surface. Others like “#inspirational” very accurately describe the achievements of those taking part in the Paralympics.
However, my personal experience of disability, such as it is from a carer’s perspective, is different. I can’t agree with the one-size-fits-all approach to disability (or anything else for that matter). Is it reasonable to think that anyone with a disability can just rock up and be able to perform like that? No. It’d be ridiculous to think that. Those taking part are individuals. And are only representative of themselves, maybe their disability, but they mostly represent their body’s ability to perform despite the limitations they face. Note the words “their body’s ability”.
I’m sorry but no amount of positive thinking is going to make someone’s body do what it is incapable of doing. No matter how determined you are, your thought processes can’t control your nervous system if it’s broken. It’s “#onethingthatisimpossible”. I see MW struggle to do the most basic things, such as feed herself, and it makes me angry that people in positions of influence, i.e. the media, are so blinkered by their particular dogma that they are happy to write articles and “opinion pieces” which all but say that disability is just a matter of attitude. That just isn’t true. My personal experiences tell me so.
When opinion becomes a tool with which to drive Government policy, it becomes a little more insidious. Comments from some Government politicians watching the Paralympics seem to hint at a belief that Paralympians ought to be the example that all disabled people should aspire to. They’re suggesting that disability is something that can be treated in a catch-all manner. It would be very convenient for all concerned if that were true but it isn’t.
I’m not looking to denigrate the achievements of those who are competing at the Paralympics. Paralympians are, like Olympians, the best at what they do. They are elite athletes. We should all note that they are the exception and not the rule.
1. http//www.dailymail.co.uk/news/article-2018874/Incapacity-benefit-Just-1-14-sickness-claimants-unfit-work.html – by Kirsty Walker
2. http//blogs.telegraph.co.uk/news/cristinaodone/100173256/the-disability-rights-lobby-should-think-twice-before-opposing-necessary-reforms/ – by Christina Odone
Something struck me today while having a coffee with a friend. And that’s the effect on other people when I describe what happens in my and MW’s lives. When I’m asked how things are going, I’m often torn as to just how much I say. And I’m never quite sure just what to say. I’m not going to lie about it, there’s no point in that. Everything I say or write has been absolutely honest. Which is my point. It’s honest, but it’s grim. Or, at least, it can be construed as grim by some. Even skimming the surface of things can be unsettling.
If I say that things are difficult, it doesn’t really explain anything. So, I’ll expand on that. Only slightly, mind. MW is deteriorating, she’s losing feeling from the waist down (let alone lost movement). She’s losing upper body strength and sleeps a lot. The need for sheltered accommodation is very real now. In our forties. There you go. What’s that? *counts* 3 sentences? 3 sentences that give an idea of what’s going on but don’t delve too deeply. Trust me, there is a lot more detail that I don’t talk about. But when I say them (or write them) in response to being asked, “How are things?”, I get the impression that it’s an awful lot to take in. And, I guess it is. I see the person I’m talking to imagining how things are and how they’d deal with things in the same position – and that imagining is done in a split-second – and I see the realisation that it really is difficult. I live with these circumstances every day so I’m hardened to them. But I’m sensitive to the way others react when they hear (read) what’s happening here. I don’t want to bring your mood down by telling you things. I’m not going to lie to anyone though.
I’ve started pausing………………………..before answering the “How are things?” question. Because I’m aware that the reply is a bit of an emotional hand grenade. So, if you do ask me how things are, I’m not ignoring you – I’m just thinking of the best way to tell you without ruining your day.
Friday night/Saturday morning – 00:35.
I usually take my time over these posts, making sure they make sense before letting them out “in the wild”. I’m pretty self-critical – no, actually, I’m extremely self-critical – and this extends to writing posts. I try not to depress the shit out of you, gentle reader – or me, for that matter. I also try and make sure I’ve got something vaguely interesting to write about before putting finger to keyboard. I haven’t got that vaguely-interesting-something tonight, that “hook” to hang the rest of the post on.
It’s not for lack of anything in the news. Jack Osbourne has recently been diagnosed with MS, presumably Relapsing Remitting MS. I’ve got something swirling about in my head about this but I just can’t get it out. I wish him and his family well for the future. It’s also the end of Carers’ Week in the UK. I’ve not followed enough of the goings-on, even locally, to use it as a subject. I can’t even summon the vitriol to wade into Jimmy Carr, tax avoidance schemes and their knock on effect to welfare services. I’m too preoccupied with what’s going on here.
No, it’s just me burbling tonight. Frankly, I’m trying to find something that’ll make me smile. Because this week has been hard. After taking MW to the dentist, it’s come to light that she’s been struggling to clean her teeth for a while now. One of the first things you’re taught as a child is to clean yourself. Brushing your teeth is one of the basic planks of personal hygiene and now I’m going to start to do this for her. Since MW already has to be assisted to shower, this really shouldn’t come a shock. I mean, it’s a natural progression of the difficulties she has. But assisting is one thing, actually taking over doing a thing entirely is another. I’ve noticed a real difference in her upper body strength for some time now. It’s harder to get MW dressed because she can’t move her body as freely as she could even up to about 4/5 months ago. I know she can tell there’s been a change for the worse recently. I don’t know how she’s going to take to having this done for her. I don’t know how *I’M* going to take to doing it. There’s no manual to cleaning someone else’s teeth, is there? Fuck.
The week started pretty crappily too. Last week, MW had a routine eye-test. She’d realised that her eyesight was deteriorating and thought it was something that could be improved by stronger lenses in her glasses. So, off to the opticians. Half an hour later we’d been told that the optic nerve in her left eye is very, very pale. Her eyesight in that eye has deteriorated to 6/120 when aided with lenses. This scoring puts her at legally blind in that eye (at least, according to information I’ve looked at online). The sight in her right eye is compromised too but not to the same extent. The optician’s advice was to contact the specialist MS nurse with a view to being referred to an ophthalmologist for further tests and remedial action. I rang the MS nurse on Monday. Sadly, she told us that there’d be no referral. The optician’s default setting when they can’t remedy eyesight issues is to refer the client to their GP for further action. In MW’s case, the paleness of the optic nerve is due to nerve damage cause by MS. The damage is untreatable and irreparable. The only thing to do is note the optician’s findings. Double fuck.
So, after all this news, what do I do? Spend tonight looking at Richard Pryor documentaries on YouTube. Breaking my cardinal rule of not Googling this shit because it will fuck with your head. I’ve spent most of tonight crying. Probably because the crap news has kept coming this week and seeing Richard Pryor struggling at the end of his life in a wheelchair made me think of the future. And all I could see was bleak. Another cardinal rule broken. Double teary fuck with bells on.
Jack Osbourne tweeted to the news organisations which have started printing all kinds of horror stories in the wake of his diagnosis. His tweet reads, “Dear journalists…will you please stop sensationalizing my situation to sell ur poorly written magazines and papers. I AM NOT DYING!”. In his case, he’s right – even though worst-case scenarios make for much better stories and paper sales – Jack Osbourne is not dying with MS. But fuck me when MS is progressive, it’s hard to look at the disease and not see darkness.
I’ve just realised (at 21:09 BST) that this little window on my personal world is exactly a year old today. In that first year I’ve made some new friends, met some lovely people, and had some of the most kind messages of support and encouragement.
I’d do individual thanks but there are lots of people to mention and, a) I’d be frightened to leave anyone out and, b) this post would get all Gwyneth Paltrow and no-one wants that.
I will say thank you to anyone and everyone who’s taken the time to read anything on here. It does mean a lot.
I’m not done blogging yet though…..
Finding a carer that’s good to work with is difficult. Not that there aren’t good careworkers out there – there are loads of them. But it comes down to personality in the end. Sadly, Maureen, the carer that’s worked with MW and me has decided to move on to pastures new. I’m not going to say that it’s all been smiles and good times with Maureen. Like all relationships, both personal and professional, there have been some arguments and spats, but we’ve worked through them.
I’ve already written about Maureen and how she’s helped us every morning. She’ll probably not see this but I hope she’s happy in whatever she moves on to. We’ll still see her occasionally – we may have lost a good carer but we’ve gained a friend, which is far more important!!
On a similar subject, a friend of mine on Twitter is delivering a eulogy at the funeral of a woman she cared for until her recent passing. To have been given this honour speaks of the close relationship she had with the person she cared for. I suspect it will be difficult but I hope there are more smiles than tears.
I had a conversation with another carer recently. This conversation took place on a Friday night but it only really began after we’d wished each other a good weekend. And we both recognised the truth that, although the weekend was about to begin, there would be no distinction between a weekday and the forthcoming so-called days off.
This is something I’ve only acknowledged to myself over the past few weeks. When other people are looking forward to a couple of days relaxation away from work, I just feel flat. Simply because there is no line between Friday evening and Saturday. There is no end of shift or regular day off. I never really know what to say when people wish me a good weekend. I’ll reciprocate the sentiment, of course, because I know that weekends are important to people for all kinds of reasons – time off work, time to see family, and so on. But for me, and the other carer I was talking to, each weekend is very much like every other day – and that includes birthdays, Christmas, etc. That’s because the symptoms MW has are constant. She needs to be got out of bed, washed, dressed, have food made for her, have her catheter emptied, be taken to the toilet to defecate – the list goes on. MS doesn’t take a day off for her.
This realisation was reinforced today by news of a poll carried out by the Carers Trust which says that 60% of carers feel isolated, suffer from depression, are physically exhausted and have financial problems. The story’s case study featured Norman Phillips, a man who had to give up his career to care for his wife who suffers with MS. Norman said that he’d pushed himself to the point where he became depressed, injured his back through moving his wife, and ended up in a cardiac unit after collapsing. He was exhausted – his shift never ended.
The Carers Trust poll seeks to highlight to Government that the UK’s 6m unpaid carers are in need of more support in their never-ending shift. I wonder if they’ll listen?
Sorry for not writing anything recently. It’s not that nothing’s happened or that there’s been a miraculous upturn in fortune. I’ve just been busy doing the usual and trying to have some semblance of a social life via Twitter, so the blog’s been put on the back-burner.
However, I’ve received a couple of messages recently from people who tell me that they’ve been moved to tears after reading my posts. This has made me feel a little guilty. I’ve never set out to upset anyone with this blog. But I’m not naïve. I realise that a lot of the information I’ve put on here is very sensitive to me and could possibly provoke strong feelings in others. I get the same strong feelings when I re-read the posts and they’re also partly the reason why there haven’t been any posts for a wee while. Writing about my experiences can be a little upsetting. I’m sorry if I’ve upset anyone else. Can we hug?
I’d also to say thank you to anyone and everyone who reads this. It’s very humbling to think that people take the time and trouble to read my posts. I can’t promise that I’ll blog frequently but I aim to continue the posts from time to time.
“Will I ever walk again?”
“I don’t know.”, I said, with an expression somewhere between pain and pity.
Now, we both know the answer to this question. No. MW won’t walk again.
Three things tell me that.
1. MW hasn’t been able to walk for the best part of two years.
2. MW cannot stand, cannot bear weight on her feet. One of the basic things we take for granted as people.
3. MW has had no feeling in her feet for months, and has trouble moving them independently.
And yet I was compelled to say “I don’t know”. To offer a tiny glimmer of hope despite the glaringly obvious staring at us both. I couldn’t say it. I couldn’t say, “no”, and take that tiny glimmer away for good.
What would you have said?
I’m sorry there’s been blog “radio-silence” recently. I’ve not really thought I’ve had anything worthwhile to say about the day-to-day things that are happening here. Not that nothing has happened, it’s just that I get tired of hearing my inner voice bang on about the same old things and I assume you get tired of reading it.
However, I’m moved to write something about mental health. This has come to mind after a few people I speak to on Twitter have received a hard time from mindless bullies about their own mental health conditions. I can’t help but think that Twitter, and life in general, is full of people who would mock others’ difficulties without insight but don’t have the intellectual or emotional capacity to either try and imagine what other people are experiencing or justify their cruel jibes.
But the over-riding catalyst for this post is the tragic death of Gary Speed. Gary was a man who, on the surface, seemed to have had a generous helping of the good things in life. He was a successful professional footballer with a long and distinguished career. After his playing career, he moved into football management and was latterly the manager of the Welsh national side. He had looks that were made for television, he had a family which, by all accounts, loved him dearly, and his amiability and warmth made him a man to be admired by his contemporaries and those who looked up to him. Yet he was found on 27th November 2011, having taken his own life at the age of 42.
I felt his death very deeply despite having never met him. I can’t adequately explain why the death of a stranger has touched me in such a way. Perhaps it’s because he was a similar age to me. Perhaps because I’ve watched him throughout his professional career and, like people who appear on our home television screens, I felt as if I knew him or, at least, was acquainted with him. More likely it’s a combination of these two elements alongside a third. That being that he’s alleged to have suffered from depression.
Following Gary’s death, media speculators jumped to the conclusion that he was depressed. Not an unreasonable assumption given the circumstances surrounding his death. One of the questions asked most frequently in the media is how someone who only hours after appearing on live television seeming to be happy, can be driven to such a point as to not only consider ending his own life but acting on it? I suspect that even with all of the enquiries that will follow, no-one will get an adequate answer. The only person that could shed any light on that would be Gary himself.
I’ve written about the fact that I suffer from depression before. This may be the overwhelming reason why I feel such empathy with Gary Speed – the idea that despite the differences in our lives and lifestyles, he could be me and I could be him. I’m somewhat ashamed to say that I know how it feels for my mood to shift radically from relatively happy to extremely despondent in a short space of time. I’ve thrashed this post around in my head for a good couple of months now; as to whether I should tell you one of the darkest secrets I carry. Because, to me, it’s shameful. I don’t want to write it in a search for sympathy for myself but if I don’t include it here then I’d be doing myself a disservice, and, in a way, to Gary Speed as well. Here goes.
I have, in the past, felt so low as to actually consider that ending my life was the best way out of how I was feeling. I’d even planned a way of doing it that required no equipment. A river ran near my house and, since I couldn’t swim, I thought it would be easy to walk into the river, keep walking and that would be that. See? When you put it into a sentence, it doesn’t seem much, does it? 29 words and a life is gone. That thought bounced about in my head for months. It popped up at work, during the night, on the bus, everywhere. I cried more than I thought was possible when it appeared because I felt I’d not got the courage to go through with it, and not enough courage to carry on living the life I was in. I was a mess.
That was 10 years ago. What stopped me was meeting MW, and leaving a house and relationship which was abusive. Now, I find myself in dark places on a regular basis because of a different trigger. I’m sure I don’t need to spell out what the triggers are now. If you’ve read this blog, I hope you have the intellectual and emotional capacity to try to imagine what they are, and what the consequences might be of dwelling on those triggers for hours on end. The shifts in mood I experience now are still as strong and as sudden as 10 years ago. And it frightens me because, although I still have some scraps of courage to call upon to keep going, I know that there is a breaking point when a person might think that enough is enough.
Which brings me back to my Twitter friends and Gary Speed. Following Gary’s death, distasteful comments were rife on social media sites. My Twitter friends have received the most appalling comments ridiculing their publicly admitted mental health issues. It’s well documented that mental health issues are treated with scepticism or, worse, with disdain and ridicule. I could go on at length about the rights and wrongs of this attitude but that’s for another time. For now, it’s enough for me to say that each of us should think before we blithely make light of such a serious subject. It might save a life.
I’ll finish by paraphrasing a line from a BBC drama, Garrow’s Law, which seemed rather poignant as it was broadcast around the time of Gary Speed’s death. It seems rather appropriate.
Gary Speed has gone. When a good man dies, so much dies with him. Not the goodness, I hope – we have great need of that here. We, who have held him in such respect and regard, should demonstrate it now.