It’s Not An April Fool, It Really Never Ends!!!
As my pain increases as my condition deteriorates, my mood dips sharply, as sharply as the stabbing, throbbing pain I experience. My only option is to be drugged up to a point where consciousness is no longer needed. Thought is no longer possible in any clear form; reason dissipates hand in hand with my ability to interpret the blurred images in front of me, as morphine and valium take control. These drugs camp out in my frontal lobe and sedate my body and mind, but I no longer care, as long as I don’t feel, and I mean physically and emotionally as both can deliver equal intensity of agonising pain. Both can be unbearable, are unbearable. Both simply ravish my resilience until I just don’t care what happens, as dangerous as this state is, as any solution becomes acceptable. They make a difference, but this difference is the width of a knife edge, less than the width of a hair, the merest of differences so slight to the untrained eye, but a difference that has enormous consequences. The difference I am talking about is about whether to fight on or just give up, and any additional pain or discomfort tips one squarely on the side of “I JUST CANT TAKE ANYMORE!”
I have heard people say that this is defeatist talk, that one has to consider the effects of giving up on those around you. Where would condoning such thoughts of a prescribed end lead society? I have considered this carefully and so very closely, especially since my own condition will land me squarely one day on the dreaded, the infamous, the notoriously negative Liverpool Pathway. Some do speak very loudly asking “Do we want a society that accepts euthanasia as common place?” Outwardly of course not, but the approach of withdrawing food and fluids from elderly people who may be terminally ill is, despite its guise of doing what is best for the patient, euthanasia that happens all the time. What does one think the use of high levels of morphine in terminally ill care being common place is? And let’s add into the mix that Doctors know such liberal morphine doses will have the side effects of restricting or completely knock out the persons respirations – IT’S EUTHANASIA! All of which we accept by our passive acknowledgment that it goes on and yet we actively do nothing at all to prevent it. In fact I think we promote it by statements such as, “make sure they are not suffering”, “I don’t want them to be in any pain”, or “They wouldn’t have felt a thing at the end” – nor would an elephant with some of the levels of morphine that can be prescribed. We as a society in the UK have euthanasia. Rightly or wrongly it is here, it is accepted and it happens every day with us all passively accepting it. What do we think will be the results of someone being admitted with problems with their breathing due to pneumonia being prescribed morphine which restricts the ability to breathe? In the elderly it is called “making them comfortable”, i.e. killing them but making sure it is pain free! Didn’t I read somewhere that in this country there are 1,500 deaths a day, and the majority will be in nursing/care homes or in hospital, above the age of 65 and will have been prescribed morphine – time society acknowledged what happens every single day. I am NOT saying it is right or wrong but in the UK we condone and practice euthanasia – so get over it.
But when people such as I talk about it in the context of being in unbearable pain and not retired, the very same people that condone euthanasia in the elderly jump up and down in apoplectic condemnation, “But what about the years you have left”, “think about the effect on your family”. This last one boils my catheter bag until the room is filled with anger generated steam which could compete with any Greek sauna. As if my family are not on my mind all the time, as if I haven’t spent hour upon hour thinking of that which may be best for them even if it hurts them in the short term. And who are the loudest and most vitriolic objectors? Those usually that have no comprehension of what they are talking about, those that in all likelihood will never be in my situation or that of my loved ones. The same people that need to shut up and listen more, learn more before they speak with the volume and intensity that would give rise to people believing they may actually know what they are talking about – WHICH THEY DO NOT! When in reality they are just producing rancid hot gas, the nature of which would not be out of place if flatulently released from between ones buttocks whilst having a bit of a poo! And to be honest their words have the same meaning as the gas just described, as it reminds one of total crap.
When the pain has become intolerable hour after hour after hour, through long lonely nights of pure anguish and hell, I do not fear the end of living. What anguishes me the most is what all this is doing to the people I love most in my life. The hell and anguish, despair and demoralising effect I have on them, not the pain I am in, the pain I make them suffer. This hurts more than any nerves being crushed, or tendons torn, any discs prolapsing, the look on their faces knowing they cannot do anything to help is hell on earth for me, this is hell for me and them. Anyone who professes to love their family must therefore consider any and every option, however unpalatable; to relieve the hell you drag them through. And I do mean every option is considered. This isn’t giving up or not considering the negative effect of not being around, it is the polar opposite, it is the consideration of what your loved ones will gain that makes the exit strategy most appealing. Yes there will be a period of loss, of mourning for the loved one lost, but is it not the act of pure love to stop your family living through what you are putting them through. Is it not the act of love to want them to have a stress-less life, a worry-less life, a pain-less life, even if you must cause them short term hurt. The exit strategy is not the act of a coward, is not a selfish act, it takes enormous courage to even consider it, allow it to permeate through the drugged haze.
I don’t feel that my family had a choice in what has happened. I feel I have imposed my condition, my problems, on my Angel, on my family, I hate that I have. I feel daily that my family have been forced into this awful life out of duty, out of loyalty, out of having no other option. Sometimes I think the ‘exit strategy’ gives them options, a new life, and a better life, yes gives them options. Until then I constantly watch for signs that they have had enough of this weight that I force them to carry. One doesn’t have to wait too long when one picks up on the sighs, the eye rolling, the irritated “what?!”, when you ask for help when people are scattered through the house, more frequent when they are tired from work and from the work of looking after me. I know they don’t mean it, they are usually tired from the day’s toil and then to be subjected to more demands on their time is just unfair, is not what they signed up to.
I have noted in previous blogs that I am ashamed of the drain I am on them, emotionally, physically, on their time when they should be relaxing. I hate this disability, the need for help, the humiliation of personal care, the indignity of it all and the embarrassment that one forces the ones you love the most to go through it with you. I can never come to terms with ‘it’, and ‘it’ makes me watch as I drag them down with me. I can understand and appreciate why some chose euthanasia as an option, a living choice to relieve your family of all the burden, the stress, the drain I so clearly am, emotionally, physically, on every level.
I have no qualms about meeting my maker, I know that if this entity is what I think it is, and then it already knows all I have done, already aware of any sins. What I am afraid of is being called to account for the potential not realised, the things undone that I was meant to do, the positive differences I was meant to make and haven’t. These are the things I fear to be held to account of, as I have no answers, just pitiful excuses that merely highlights the inadequate person I feel I have become, I know I have become. I won’t use my disability as an excuse, as I feel there is unrealised potential, greatness never attained, and I am ashamed that I have not made the positive difference to our society that I have dreamed of doing – perhaps foolishly so, egocentrically so.
I don’t miss the loss of use of my legs, the loss of control over bodily functions, what I miss is the loss of who I used to be, who I was, the person lost, the personality changed beyond recognition – I don’t like this person. It’s changed me, changed roles for my family without even considering them. I have lost so much surely how and when it ends is my choice, when I set my family free to live a life without this human drain on them on every level – yes I see it as setting them and myself free, sure this is ok? Even if it is not OK, we should be having the discussion, we should be talking about it openly, honestly as it is part of our society every single day, even if we don’t acknowledge it.
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