This is the post I wish I could write:
It is with much sadness that I have to announce that this is The End. I take no pleasure in it at all. I don't want it to be this way. I had dreams. Not grandiose ones like some have; rather, dreams of a life where needs were met with a bit to spare so that everything didn't revolve around money, but not so much that I forgot where I came from. Where I could be with those I love and know that they love me. Where I could do my bit to make the world a better place for those less fortunate than me. Where I could wake up and go to sleep contented. That's about the extent of what I can remember; the details of any dreams are long gone.
The inherent problem with dreams is that they are not real. In reality, my life is shit. And while this may be a surprise to some, it's not just down to the constant, severe pain. Even the crippling fatigue can be overcome to some extent with adaptation. I have other problems.
It is almost seven years now since my life was changed forever by the callous act of a stranger. And I am so very, very lonely. You have never experienced pain until you've experienced it on your own. The people who I initially thought would be there for me when I first got ill all flaked out on me. Talk about fair weather friends. Everybody loves you when you're able to do anything they ask, when you're fun and bouncy, when you're working your arse off for them, when you don't challenge their perception of the world. Everyone wants a natural problem-solver around. Everything is fine when what comes out of your mouth (or fingers) is what you intend to say rather than some accidentally offensive nonsense because you get your words mixed up or fail to see the bad way they could be interpreted.
What people don't want is some braindead idiot who can't remember what he did five minutes ago, and who has no idea why you're upset at him unless you spell it out in words of one syllable. They don't want somebody they have to care for, whose problems they have to solve, who says things as he thinks them because he can't hold a thought long enough to wait until you want to hear it. They don't want to have to shut up a moment when I ask them to because my brain just can't keep up even with a normal conversation pace. They take offense at my problems, as though I intentionally fucked up my own cognitive functions just to piss them off. They don't want to have to think about things like accessible locations, or planning things thoroughly. They don't want to think about the part they have played when I melt down under the stress of being treated like shit constantly.
No, I'm always the bad guy. People don't want a friend whose life has been so radically altered by disability that he's (belatedly) woken up to just how unfair the world is, and whose passion for justice has been amplified as a consequence and so is now all he can think about. They don't want that, because they want to carry on doing things like shafting people for a living without being made aware, even passively, that that's what they're doing. This is such a big deal that they write me lengthy, hurtful messages, sometimes in public but more often in private. You see, when you hate somebody this much you can't just walk away. You have to make sure they feel it when you leave. Make sure they know that you're abandoning them because you hate them. Make sure they feel your wrath, because by no longer serving your purposes they have let you down.
This was said to me earlier today: “Ask anyone who knows you: you make everything about yourself.” Ask anyone. I'm a selfish bastard. That's not my swearword. I really get called that, even by people I desperately turn to for help. Never mind I have to check several times a day what day of the week it is. Never mind that I can't risk bathing without assistance, or safely cook for myself, or find the thing I just put down a minute ago, or even have a poo without incident. All of this is just a self-centred, attention-seeking act.
The government agrees. I never did get round to claiming DLA, because the application form is really hard and I've not been able to face it. Now that its replacement will be even harder to get, I suppose I've missed my chance for financial support. At the same time, they've proclaimed that my studio, where I frequently sleep, which I use for my light therapy and which I have kitted out as a spoonie-friendly work room, is in fact an unoccupied bedroom. We are to be financially penalised for this starting in a matter of days. Penalised for having the nerve to adapt to my disability, and to not conform to some millionaires' idea of ‘need’. As well as introducing the bedroom tax, Council Tax Benefit is being cut, Universal Credit is being rolled out, there is the benefits cap coming and I have absolutely no idea how this affects us because my brain is broken and I lack the mental capacity to work it out. In all likelihood I'll screw up some piece of paperwork and end up with nothing. And as for the NHS… again I can't work it out. It's not looking good, but every time I try to look at the details of what's happening it all reads as gibberish. And there's nobody to help me understand.
Like my former friends, the government has made it clear: there is no place in this world for a burden like me. By making survival itself such a challenge, they are severely reducing my prospects of independence. When all my spoons are needed just to get from day-to-day, how am I supposed to build up any sort of business and be able to make up the shortfall? This has to be intentional. They want me to give up and die. And because I am so tired of this fight, they win. Shortly after I publish this, I intend to take my own life. I've put it off so far because of concern for my children, but I now realise that by continuing to be such a drain on everybody I am doing them more harm than good. I'm sure that, when I am gone, people will suddenly rush to help and therefore they won't do without.
It is better this way. Those few of you who didn't desert me, know that I love you, and please don't hate me for leaving you. Goodbye.
Of course, I can't write that. I'm not sure if I'm too scared or stubborn to actually do it. Probably a bit of both. But I guess I am condemned to life. I will continue to be a selfish, dead weight until I die of natural causes. Then the world can recover from the effort of supporting me, and forget I ever existed.
It's New Year's Eve, and approaching two years since I wrote a post entitled “Why I need to get a wheelchair”. It was well received at the time, and if you haven't read it I recommend you do so before proceeding with this one. It's been an eventful period, and one I'd not want to relive. This is our first Christmas/New Year without mum, and to be honest I'd rather not delve into that at this point. But now feels like it might be the right time to follow up my earlier writing.
As planned, I bought a manual chair shortly after publishing that piece. I had no intention of going racing in it, or indeed of using it any more often than strictly necessary, so I decided to optimise for cost. This meant that, while not a tank, it's certainly a heavier model than many experienced wheelies will be used to. But as it happens, I'm glad I didn't waste money on a more expensive model.
My first tentative attempts at mobility were positive enough. I could manoeuvre myself around, indoors on a level surface. I could get myself over small thresholds if I had to. This seemed promising. But hope quickly faded when we tried to go out. The curvature of the road surface, so easy to ignore when walking or driving, suddenly seemed like a mountain. It's sufficient to mean that by the time I cross the road, if I make it at all, I'm already exhausted. I've always had poor muscle tone, although in the past I have made up for it when necessary with sheer bloodymindedness. But with the fibro fatigue, that's just not enough. A lighter chair would not have solved this problem; shifting my own bodyweight using my arms is too much. With hindsight this is obvious, given the effort it takes to get out of the bath. On Christmas Day, at my sister's house, I had to crawl up the stairs and call for help to get back down. At the time, despite my defiant article, I was still in denial over the true extent of my disabilities.
All was not lost, as I could still be wheeled around. It was certainly preferable to walking. It turns out that the choice of “walkie day or wheelie day” was a short-lived luxury. Whether by serendipity or divine intervention, I opted for a wheelchair just in time. My ability to walk more than a very short distance reduced over a matter of weeks (I did try) and soon even the end of the road seemed like a totally unrealistic destination. It still does. While my mum was in Christie's near the end, I made the mistake of trying to visit without my chair. I only had to get from my dad's car to the ward (and later, back). It was torture; I could not have done it a second time. The clothes on the floor in the photo should give some indication of my capacity for physical activity.
Sadly being pushed around, while meaning I wasn't entirely housebound, is hardly a liberating experience. Can you imagine not being in control of where you go? Having to always be accompanied? Feeling the pain of every bump and jolt that you would have avoided had you been in charge? Being at the mercy of whoever is driving you? Although you might be inclined to view this as a matter of trust, in reality it's about dependence, and vulnerability. Combined with long-term mental illness it's very much not a good thing. The experiment had failed. A manual chair was better than nothing, but not a viable long-term solution.
For those not in the know, all the rhetoric you hear about disabled folk being a bunch of workshy scroungers is complete bollocks. One of the many things that people find far too easy to believe is that we get all sorts of things for free. Now sure, I don't have to pay my prescription fees, though that's actually down to our Working Tax Credit (that benefit that non-scroungers get). Those who begrudge this can try taking the eight long-term medications I'm currently on as it's clearly such an amazing perk. And as they're so keen on paying, perhaps they'd like to pay the non-subsidised rate? Lots of chronically ill people take more than this. My belief is that all prescriptions should be issued and filled for free. A society which means-tests access to healthcare may be better than one which preserves it for the rich, but it's still far from enlightened.
Some people qualify for an NHS wheelchair. I considered describing them as lucky, but that would be highly inappropriate. From talking to some of those people, I have learned a few important things. Firstly, NHS-provided chairs are likely to be a fairly basic model. This in itself isn't an issue, as long as that basic model actually meets your needs. But of course, there are good reasons why those who can, buy something better. Secondly, you have to wait. If you want to be judgmental and talk rubbish about me being the sort of person who likes instant gratification, just go ahead. If you're lucky I'll ignore you. If not… perhaps I shouldn't finish that sentence. Being able to move around freely in my environment is not the sort of “gratification” that most people have to think about. I remember that phrase being used by an employer regarding my desire to feed my child, and actually spend some time with her. Easy to say on a director's salary, able to schedule business commitments around your family's needs. Some things have to happen now. And thirdly, it's actually quite hard to convince them to give you one. Getting a manual chair is hard enough. To qualify for an electric, so I'm told, you have to be unable to get around even in your own home. Sadly I feel like I may be getting there, but I'm not there yet.
So I have had to buy a powerchair. Not a scooter: you can't take them on public transport (at least not round here), or into a restaurant etc. I got a second-hand one, of course. I don't buy new unless I see a benefit to doing so. Nevertheless, this was still an outlay of around half a grand, which is not insignificant for a low income household such as ours. I've bought cars for less. As you might have inferred from my reference to public transport, we don't currently have a car. Thus far I haven't had the guts to claim DLA for myself; maintaining mental stability is a challenge even when things are going well, and DWP have pushed me over the edge before. This is one of those bridges which has to be crossed eventually, indeed very soon, but I have been putting it off as long as I can. So no Motability for me. It kind of doesn't matter, as I don't believe I'm currently fit to drive frequently enough to justify the expense, and I'm the only driver in the household. I live in hope of that changing.
Once my chair arrived, and a minor problem had been resolved with the seller, I naturally was keen to take her for a spin as soon as possible. For the first time in many months, I joined my wife and children on a trip to the park. It is hard to describe the emotion associated with that expedition. When we moved into this house, stubbornness meant I was still doing stupid things like walking the girls into the city centre, pain be damned. The rapid decline in my health, and therefore mobility, was accompanied by guilt. I couldn't do all the things my kids were used to. I felt like a failure as a dad. The chair only goes 4 MPH but that's fast enough to chase them around the park. It's immense. (Did I just write that? I've clearly lived with a Welsh person far too long.)
I've gradually built myself up, from going with the family to the local shops, to tram journeys, to finally picking up our youngest from school on my own. It hasn't been without incident: some people seem to take pleasure in placing other people's lives at risk. When you get onto a tram, and some idiot parks herself in the wheelchair space and refuses to move, you're in a dangerous position whatever you do. Physics can be ruthless, and trams accelerate quickly. Aside from that, there is a general misconception that, since the Disability Discrimination Act has been around for so long, everything must surely be accessible. This is very far from the truth. Not only did the act place little to no compulsion on councils and businesses to fix existing access problems, but it's just not effectively applied/enforced in practice. The pavements in our locality are rubbish for wheelies. Portable chairs such as mine are not designed to mount curbs. I have learned a bunnyhop-esque technique for overcoming some obstacles, but the thought of accidentally toppling myself makes going solo quite frightening. Most of our local shops have a step at the entrance; this is a definite show-stopper.
But such issues aside: I am no longer trapped! Yes, journeys still take planning and careful consideration. Yes, many places remain out of scope for now. Yes, I can only travel within my battery's range. But I have some of my independence back!
There is a very important petition which has been set up as a challenge to the government's continued assault against the poor: they have declared war on the sick, disabled and otherwise disadvantaged. I fall into that category. I know that some of you do too. And if you don't, then you are just an accident, illness or other misfortune away from joining us.
We are not scroungers. We are not workshy. We are not worthless.
How would you survive if you were suddenly unable to make a living? Or your cost of living suddenly became much higher due to disability? Or you found yourself trapped in your own home? Or you had to quit paid employment to care for a partner, child, parent, sibling? All the things you take for granted, gone in an instant, and you find there is no safety net.
A war against the poor is a war against us all.
With that in mind, I urge you to sign the petition and to encourage as many others as you can to do the same*. The threshold to qualify for a debate in the House of Commons is 100,000 signatures. This may sound like a lot but it is a small fraction of the number of people affected by these dangerous welfare reforms. Crossing the threshold is not the end of the fight, but it is a message the government cannot ignore.
The text of the petition reads:
We call for a Cumulative Impact Assessment of Welfare Reform, and a New Deal for sick & disabled people based on their needs, abilities and ambitions
Responsible department: Department for Work and Pensions
We call for:
A Cumulative Impact Assessment of all cuts and changes affecting sick & disabled people, their families and carers, and a free vote on repeal of the Welfare Reform Act.
An immediate end to the Work Capability Assessment, as voted for by the British Medical Association.
Consultation between the Depts of Health & Education to improve support into work for sick & disabled people, and an end to forced work under threat of sanctions for people on disability benefits.
An Independent, Committee-Based Inquiry into Welfare Reform, covering but not limited to: (1) Care home admission rises, daycare centres, access to education for people with learning difficulties, universal mental health treatments, Remploy closures; (2) DWP media links, the ATOS contract, IT implementation of Universal Credit; (3) Human rights abuses against disabled people, excess claimant deaths & the disregard of medical evidence in decision making by ATOS, DWP & the Tribunal Service.
If you claim benefits or care about someone who does, then this affects you. Remember: Tax credits are welfare payments too, as are child benefit, housing benefit, council tax benefit, state pension, and the cost of the NHS care which may be keeping you healthy enough to stay in work. Don't let them play divide and rule by convincing one group of welfare recipients that they're above another. Don't let them get away with labelling our society's most vulnerable people, including those you know and love, as a burden. Please, please, please support this campaign. Because you could be next.
* I'm about to stick a notice in my window containing the QR code shown here that will direct any curious smartphone users to the petition. It's easy to write these little acts off, but if there's a chance it could result in one additional signature then IMHO it is worth it.
This weekend will involve a trip to Scotland, mum's native land and one of the places I consider to be my home. It'll be a flying visit, a quick turnaround. We had to do this a few weeks ago, for the funeral of one of my uncles (mum's brother-in-law) who also fell to cancer. It has been a truly horrible year for our family, with one branch losing three loved ones within the space of a few weeks, and our branch coming frighteningly close to the same. While things are not quite on the scale of Job's nightmare one can certainly sympathise with his forthright outburst when the trial became too much to bear.
Now the time has come to take another, painful step. Mum never specified what to do with her remains. And that's fair enough. When we die, what happens to the shell we used to inhabit is irrelevant. It's not as if we need it any more. When it's my turn, feel free to flush me down the toilet if it solves a problem. But that problem will have to be solved; when a person is cremated, something has to be done with the ashes.
My dad did ask more than once for input on what to do, but I had no preference and feel that, as she was his wife, it is his decision to make. He consulted similarly with my sister. In the end, he decided to do what is probably the most sensible option: to take her home. The family have arranged that she can be interred with my Granda, her dad, who died just under a decade ago. They were very close in life and I'm sure that to be symbolically reunited in this way would please them both.
And rationally, it is just symbolic. They're both gone. But that doesn't stop it hurting. Letting go always does. I properly broke down overnight, for the first time in a few weeks. The church weekend we've just had was an emotional strain, as we initially chose to worship at Brunswick primarily to be closer to my parents; we got to know people by joining them at the previous weekend away. Today, I've requested that her Facebook account be memorialised, something which required me to find a verifiable “proof of death” to point them to. While this was aided by my mum's popularity and importance to a lot of people, it turns out it's quite hard seeing it in the announcements section of a national publication. Clicking the button to submit the request is something I've been putting off for nearly six months, but I asked my dad's permission at the weekend. On Saturday, we will say a final farewell as we let go of what's left of her body.
Unlike the phoenix, we won't rise again from our ashes. Our time on Earth is brief and we have a duty to use it well. That implies living in the present, not the past. Unlike much of the physical pain I live with, which I ignore at my peril, this emotional pain is something to be pushed through. If I'm still writing blog posts like this in another six months, then that's how it is. But mum made it clear she wanted us not to forget her, but not to wallow either. She wanted us to move on. And I learned long ago that her wishes are another thing not to be ignored. After his annus horribilis, Job lived to 140. If he didn't let go, that would have been a long, miserable life. I'm not sure what I'd do with 22,000 assorted livestock but mum would probably have used them to stage some elaborate prank. I guess that's something to work on.
Today marks a hundred days since my mum was taken from us. The fact that I've written so little since then, and spent very little time networking, should give some idea of how well I've been handling it. As of today, I'm still lapsing into the present tense when she comes up in conversation. I'm still expecting her to answer the phone when I call my dad. I'm still thinking she'll be there when I walk through their front door.
Last night, one of my girls asked me whether grandma could come back now, please. She already knew the answer. She was just hoping, beyond hope, that life could go back to normal. Normality is a curious concept. It implies predictability, stability, comfort. It's a place where everything makes sense.
Oddly enough, that doesn't describe the real world very well at all. While we struggle with painful emotions, while we desperately try to adapt to a situation we've never been through before, we crave something that doesn't exist. I can't help but think that, natural as it is, it's nevertheless a self-destructive behaviour. If overcoming grief depends on achieving normality, then are we doomed forever to be heartbroken?
I've experienced heartbreak before. In fact, I've experienced heartbreak without proper closure before. Sometimes things just can't go back to the way they were. The event itself changes you. I experienced an extremely painful relationship breakup a decade ago; she was someone I loved very deeply, that I had envisaged marrying and having a life with. It wasn't to be, and I was changed forever. That I then met, fell in love with and married someone else doesn't undo what happened.
I'm beginning to realise that losing a parent is another of those times when things really will never be the same. We may think we know what we want. We may think we need a return to normality. But what we really need is to find a way to accept that things are as they are. Because my mum was still young, I assumed she would be around a long time yet, watching her grandchildren grow up, and interfering whenever she got the chance.
It wasn't to be, and we have been changed forever. Somehow, we have to find a new normal.
With a certain sports event coming up, and the official logo being heavily policed, I decided to design my own:
This work is licensed under a Creative Commons Attribution 3.0 Unported License.
I like my design, but as I was preparing to upload the graphics I saw that Lisa Ansell had a similar thought. Her version is also freely licensed.
It's now a month since mum died.
I had a proper cry last night. It doesn't seem fair. It doesn't seem real. Everything is just a blur. I keep forgetting, and wanting to share something with her, or pick up a conversation we never finished. And then I remember.
It doesn't matter that we used to fall out sometimes. A friendship isn't about the low points, or the things we get wrong. It's about being there when it's most important. I see dad apparently coping so well, and I know that on the inside he must be hurting at least as much as I am. He's lost his best friend, with whom he had an almost telepathic relationship. My sister is clearly struggling; I've seen a lot more of her than usual and she's been round my dad's place almost constantly. My wife is going through the same pattern as me.
But the kids have been a real inspiration, especially our eldest. I think it's safe to say that her grandma was her best friend too. They shared a birthday, and had a bond like I've never seen before. She's hurting deeply, and yet still manages to find pleasure in the rest of life. She sees no need to hide or dilute her feelings. As she grieves, she is honest about everything, just like the woman she is grieving for. This gives her great strength and freedom. In “little Tricia”, mum lives on.
I guess normal service will be resumed shortly. Maybe.
One of the best features of Manchester is The Christie. If you're unlucky enough to have cancer here, at least you have access to one of the leading cancer research hospitals in the country. However, much of what they do falls out of the scope of the NHS, and that's only going to get worse as the so-called “reforms” continue. Therefore they rely heavily on their charitable fund to cover the shortfall.
I know that some people are most motivated to donate to charity when somebody is doing something visible. Sadly the nature of my conditions, at least how they are currently affecting me, makes paticipating in most sponsored events impossible. I briefly considered doing a sponsored lie there in agony and swear lots, but I'm not convinced many people would cough up.
Instead, I invite you to please sponsor my friend Kerry who is doing the Great Manchester Run* tomorrow in aid of The Christie. I've made a donation myself in the hope that it will encourage others to do so. How about you say hello on Twitter or Facebook when you've done so?
Now I just have to get over the fact that the race itself is sponsored by a private healthcare company…
This post is for the sake of anyone who has missed the announcements through other channels.
Mum's funeral will be this Friday, 11 May 2012. There will be a private committal, followed by a public service at Brunswick Parish Church in Manchester, at 2:30pm. All are welcome to join us in celebrating both mum's life and the Christian message that was so central to everything she did.
Mum's wish was that anyone who would have bought flowers should instead make a donation to either Macmillan Cancer Support or The Christie hospital, both of which provided excellent care during her final months. If you would prefer to give to one of us (myself, my dad or my sister) then that's fine. We will allocate donations appropriately.
If you are family, and would like to pay your respects at the crematorium, then please contact us for details.
At around quarter past four this morning (27 April 2012), mum drew her final breath. I missed her by seconds, but my sister was there to see her off. When the end came it was peaceful, and she passed away at home in her sleep around 24 hours after we were advised that it was imminent.
As is the Yon family way, we had been singing together and sharing memories by her bedside. Death is a sad time, but it is also a time for remembering and for thanksgiving.
So we say “thank you for the music”. We love you, and we will miss you.
Tricia Yon, 1956-2012. Rest in Peace.