Keep Hope & Carry On

Suicide ideology must be quite common with people with chronic illness, maybe more so with chronic pain… I know I find I think about it much more now than before I started this… “journey”. I’ve not thought about it this much since I was existing in desperately horrific times as a teenager. The only difference is that this time I don’t try and actually go through with it.

I suppose it just seems like a logical conclusion – extremely difficult living conditions, pain, the inability to do anything useful, frustration at being seen as a “burden on society” – not to mention family and friends… It’s entirely logical to believe there is no reason for continuing your meagre and seemingly-pointless existence.

I have not felt so utterly shamed and pointless since I was a child. I feel that I carry the burden of the fact that I am a burden. I find living difficult and painful. I am difficult to live with, difficult to help, difficult to experience. Everyone feels pity for the pain and lack of quality-of-life I have. Even I do sometimes – although when I feel self-pitying, that’s ironically when I don’t really feel suicidal. Just guilty.

 

Why Really Bother?

Sometimes I think about why I am even alive. I don’t do anything – I can’t work, I can’t really walk, I can’t take the dog out (on my own), I can’t dress myself properly, take a shower, or brush my hair alone, I can’t sing anymore (my passion… former passion), I can’t make food on my own (unless you count sandwiches), and I can’t think straight anymore or remember anything thanks to meds and/or “Fibre Fog” (if that even really exists…). I therefore can’t contribute to society, can’t earn my own money, and basically, rather pointless as a human being.

Ergo, would it not make more sense to just not exist?

As I am routinely told, life is not logical. Apparently, other things factor in, and things like logically not being here isn’t really an option for a human person. Let’s face it  – if I was a horse or a dog I would have been euthanised long ago. But I’m a human, so other rules apply. Regardless, I’m not entirely convinced that after some adjustment, others would not feel relieved and better off if I was no longer here. I would no longer burden them; their lives would be easier. I find it odd that it is “inhumane” to let an animal suffer in pain, but it is perfectly acceptable to leave a human being living in pain and call euthanasia “murder”. How are we more empathetic towards animals than humans?

The other side is that if we do want people to live in pain and with illness, why aren’t the services geared towards this? Why do we still marginalise the chronically ill and disabled from society? How is it that for the most vulnerable people who find even basic things the most difficult are forced to jump hoop after hoop to get the financial support and healthcare (inc. metal health care) they so desperately require? Why is it they have to prove their innocence in not fraudulently claiming to be ill – why not focus on obtaining evidence to find the guilty? Why is that they are punished and penalised for their afflictions rather than gently and empathetically taken care of? Why are they at the forefront for budget cuts, instead of over-inflated minister salaries and their tax-exemptions?

We are left, ignored, in the middle of the debate on who matters and why. They say human lives matter, but then we are ignored. Right now, it feels we are – after over 100 years – returning to the Victorian society we seem to have spend the last century running away from without looking back. Until now. Now it seems that society has decided it was actually some kind of golden-age of Britain. Only it wasn’t. And it’s no golden-age now.

 

Living In Another World

This is what needs to be changed for suicide ideology, or suicide itself, to be challenged and – hopefully – prevented. We need to feel that we are worth it. That we are wanted. That we can somehow be useful. That we are not a burden to everyone. That we matter.

The idea that we should be marginalised, penalised, treated badly, and treated without care or empathy. No one with compassion would do to an animal in pain or ill what they often do to people who are in pain and ill. I have personally been treated with anger, contempt, frustration, ignorance, harshness… Compassion has been quite low on the list at times.

I have a wheelchair and I can barely go anywhere in it. There aren’t a lot of places you can go in one, even now. At a branch of a huge retail empire just off Fleet Street I could not get in because of a step of about 10 inches thanks to it being on a hill. There was no option to call for help or a ramp. I had to sit outside like a bad puppy and wait for my mother to go in and get what she required. I expected better from these people. Even things like the quality of pavements for wheelchairs isn’t taken under consideration. Particularly with the streets where I live, I can’t be taken around without extreme caution, and I still experience extreme pain. The pavements aren’t flat and are too narrow, tree roots leave hugely-raised bumps of several inches and they’re not passable without trying to get over them. Once I came across one that was so bad I literally could not pass over it and the pavement was to narrow to go around it. The curbside was several inches from the road, so I couldn’t go down there to avoid it, so I was forced to turn back and find another way down that road. In this day and age, such things shouldn’t even be an issue. Because of things like this, I don’t ever really leave the house.

These are a few points of a thousand I could list.

I wonder why I feel like I don’t matter anymore…?

In my previous life, where I could walk and manage my mental health conditions, I wasn’t so marginalised. When you can walk, you take a lot of things for granted. When you can’t, so much is taken away from you, especially if pain is the reason for it. I can’t even push myself around in my chair, and for this and a couple of other reasons, I’m entirely dependent on other people to get out and go somewhere. I miss having that choice. I miss the fact that I seemed to matter. When I earned my own money, that I went to work, that I did my own shopping, that I could get around on my own (certain circumstances allowing), I took it for granted that I could.

Now I can’t. Now I don’t matter anymore.

Now I live in a different world, with different rules and different reactions. It’s been a stunning experience – I’ve been floored by just how terrible it is to try and get around, to not be able to go out and walk about on your own, to go into shops, cafes, or restaurants that you like. It should not be this difficult. Yet… it is.

 

My Own Light of “Hope”

I have Aspergers. That apparently seems to mean that I don’t see things in the way that others do. I honestly find it difficult to logically work out why my existence should continue to… well, continue. Since I can’t do anything, I serve no purpose. I just mainly sit and barely manage to exist. I cause “trouble”. I’m in constant severe pain. Precisely why would anyone want to persevere with such an existence?

I can’t really get onboard with the whole “I can’t go because [whoever] would miss me”… well, except the dog. I have an attachment to about 5 people, but I’m pretty sure each one would get on better without the burden that  I am. People will not keep me here, or prevent me from going through with anything.

My “raison d’être“, as it were, is simple – and no doubt to others, completely ridiculous. But at least I have one, and it’s mine. There’s another one too – curiosity. I suppose others might want to class it as “hope”: I want to see how it all pans out. I need to see what’s going to happen next. I can’t really come this far into what I class as Volume 3 of my life’s troubles and not see how it’s going to go. So it keeps me going – I want to see the full story, no matter what it is.

This world has things that I haven’t experienced yet. I haven’t played through my favourite games, I haven’t seen all the TV shows that I love, I haven’t mastered SQL or Linux or learned what Python programming really is all about, and I haven’t built my super gaming rig yet. I might not look to what other people would deem “normal”, but I look forward to the things that matter to me. As long as I feel this way, I will be able to override the feeling that I shouldn’t exist anymore.

But I admit… I would not need to fight so much against these feelings if this world, this society, was more amenable and welcoming to people with chronic illness and debilitating conditions. They have enough to manage with them without having to deal with being treated with prejudice by people and society. I have many problems, and nothing here is compatible to them, and they are not compatible with this world. If it were not so, I would feel more welcome and not utterly ostracised and marginalised, and I would feel that I had a place somewhere in this world, even if it was some little space in a comfortable little corner.

I imagine that kind of change would positively affect a lot of people who find it hard to live in this world.

 

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About delphinemusic

Over-enthusiastic gamer, geek, techaholic, dabbling writer & copy editor, and raging Coffeeholic ~ Loves Gadgets, Games, Tech... And Coffee. Lots and lots of coffee. ~ Obsessively-loving: Dragon Age, Mass Effect, Skyrim, Elder Scrolls Online, Fable, Divinity: Original Sin ~ ~ Successful gaming rig builder: i7-4970K, 16GB RAM, 128GB SSD, 1TB + 3TB HDD Storage, GTX 1060 6GB OC, 1150 ASUS Z97-A ATX mobo, Windows 10 ~ Trying to learn about Linux... Emphasis on "trying"... Including Fedora, Ubuntu, Mint and Raspbian ~ ... Oh, and did I mention I love coffee...? View all posts by delphinemusic

3 responses to “Keep Hope & Carry On

  • Faybun

    For me I think about a long coma, where there would be no pain. The country I’m in hardly even talks about chronic illnesses talk less of finding solutions. I believe in our own way we are creating awareness.

  • eirianlys

    You always matter to Me & mam, you are never a burden,

  • delphinemusic

    It might not actually be that way, but when you’re not used to, and don’t like, relying so heavily on people it always feels like you’re a burden… What feels worse, is the way that you really are made to feel like one by the outside world, especially when you have to do things like go to court to prove you’re really ill! (thank you for that, Tory government….)

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