Over the las almost two years, I have been testing a few different medications to manage my chronic stomach issues. However, none of them have worked as well as what I was on previously. The reason I was changed off it in the first place, was that the doctor wasn't happy with the inflammation results, even though there were no outward symptoms affecting my daily life. For me though, going back (and there is now less chance it will work again) is about quality of life, not longevity of life.
It is not a popular opinion.
But I think I came to terms with it long before I had any treatment that worked at all, as I never expected to live into old age. That sounds pretty morbid, but the quality of my daily life was already not great, me condition was constant and extreme and the typical result is cancer. At that time, there was no effective treatment that helped, so I just managed it alone, living the best I could. With some new treatments, things improved massively, but my attitude has stayed the same, quality over quantity.
Quality of life doesn't mean "enjoyment" of experience, in my opinion. It is not that joy shouldn't form part of life, but I believe it shouldn't play a leading role. Or at least, not in how people seem to evaluate enjoyment today. Enjoyment from my perspective can be uncomfortable, difficult, painful, stressful, scary and a thousand other oft-judged negative feelings. But enjoyment has to offer reward.
That reward can come in multiple forms, but I suspect that the people who judge themselves having the most rewarding life, aren't necessarily those who feel happy all the time or make the most money. I reckon it is more likely the people who believe that what they do matters, that they have meaning of action and likely something that serves a cause greater than their on desire. And it could also be that they fail a lot.
In the modern world today, I think that we have been convinced that quality of life is tied to what we have and positive feelings, without connecting it to what we actually do in our daily life. as a result, we chase short gains in positive feeling without tethering it to what we do for long-term results. Obviously an extreme of this is the dopamine addiction to irrelevant content streams where we can distract ourselves and feel good, without doing anything at all. And this decoupling of our feelings from what we do, means that we have broken the relationship that provides value to our world. The average person today needn't do anything to add value, in order to get the feeling that they would have got from actually adding value.
as I discussed with someone the other day and have many times here, most of what we do in this world is meaningless busywork that under better conditions, wouldn't need to be done. Most would consider the work of doctors and nurses as valuable, which it is, but they are mostly treating preventable lifestyle diseases. If we focused on treating the cause of the disease rather than the outcome, we would eradicate a lot of the illness. But, to lower lifestyle-caused diseases, we would need to change our lifestyle.
Our lifestyles are largely not conducive to a healthy outcome for multiple reasons. One of these are that we have aligned our behaviours to profit models, enriching corporations that are bleeding us dry of money and opportunity. Another is that we ourselves keep choosing to favour how we feel in the moment, over what outcomes we want and how we will feel about our situation in the future. And while we live daily and momentarily as this is how we experience life, we also have to understand that life itself is a continuous series of indivisible moments, so how we feel in the next moment, or a million moments from now, still matters.
Therefore, I think quality of life has to be tied to the future of our life also, but it shouldn't be necessarily tied to longevity. It would be great to live a long, healthy life, but is it valuable to live a long, unhealthy life? There is no perfect health, but I think we should also consider what the value of our life is to ourselves, the world and what impacts it has on others - especially those we care about.
For example, if I were to ask my daughter if she would rather have me live for the next ten years healthy with her, or twenty years largely trapped at home and ill, she would probably choose the twenty years. Because she can weigh up her feelings today and will evaluate a longer time as better. But, she has no insight into what quality of life that would be for her or the impacts it would have on her tomorrow or in five years from now. If however I was healthy and living a full and enjoyable life with her for ten years and then got hit by a bus, it would feel like I was taken too soon, but it would be more acceptable and in her eyes, she would have a completely different experience of our time together.
Quality, or quantity?
Being chronically ill however doesn't necessarily stop a person from having a fulfilling life, but it definitely puts a dampener on it in some respects. In others though, it might be that those who experience or have experienced chronic illness are able to derive more enjoyment from life experiences because they have reference points of much worse. Perhaps illness can create a perspective that increases appreciation and gratitude when good things take place, like feeling the warmth of the sun after a long, cold winter.
Whatever someone believes, I believe that we should all question our beliefs and motivations for behaviours. It is very easy to fall into defaulted thinking and action that will dictate our daily lives, providing that momentary feedback that we are getting something, adding something, or experiencing something, when all we are actually doing is passing the time.
Being present isn't passing time, it is experiencing as fully as possible and as no moment is perfect, it means that there is always going to be a degree of discomfort, fear, pain, illness or something else that "ruins" the moment. But the thing is, moments can't be ruined unless we add ruinous meaning to that moment, and this applies to all moments. The best and worst experiences of our lives are just moments and while we might desire more positive than negative, we don't get to choose what we experience. We do get to choose how we behave after an experience though and those actions are what is going to not only define the next moment, but all moments to come.
Our perceived experience of our own life is largely up to us, yet we keep putting the power of dictation in the hands of the external world, other people, the feeds we scroll. The results we get means that we keep retracting away from life experience and into cocoons of safety, where we can feel that we have meaning, even though we are not actually doing anything meaningful at all.
The friend I was talking to the other day is approaching middle age and is now questioning the meaning of his current life and how most of what he does, is actually meaningless. Yet, he can't break away from it because everyone else is the same and society runs on a model of meaningless activity for meaningless reward, rather than meaningful activity for meaningful reward. If we all behaved with meaning and incentivised by meaning for positive growth, we would all have a far higher quality of life experience, with far less lifestyle problems of all kinds caused.
It is quite possible that the medication works as it did earlier, but my life will be shorter. Perhaps in that future I will regret my decision not to have surgery to remove my intestines and it will all be too late. By then, it will be a counterfactual situation though, because while I can't go back, the complications from the surgery might have been so dramatic that I would have regretted having it. We can never know what the future holds, unless we make decisions now that take options off the table completely.
Every moment we have both the chance to open the future, and close it off. What we open it up to and what we shut out, is going to depend on the decisions we make and what we do right now.
Taraz
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