Different ways of thinking about our predicament

I’m not sure if this will be something that interests people on here, as I know that for many the only thing that keeps them going is the hope of a cure. I hope for a cure too, but it’s become increasingly important to me to try to find reasons to live that are founded on something deeper than just that single, uncertain hope. Because even if a cure does come, who knows how long we’ll have to wait for it?

In the meantime, we’re still here. Alive. What can we make of what we have left? Are there any positives to draw out of our experiences, as terrible as they are? Can we be like alchemists and transform the muck we’ve been given into gold?

Crucial to this, I think, is to develop narratives that cast our experiences in a different light. (I’m going to get a bit deep here, so bear with me…)

Narratives are a basic human tool; they are key to how all of us understand everything in the world and in our lives. Indeed, all language (beyond the most primitive form of language, ostensive language as it’s called by linguists, which is basically just a way of pointing at things) can be seen as a form of storytelling, insofar as it uses abstract concepts which, at the same time as describing the world, impose meaning upon it.

Take a simple sentence like “Bob is a dog.” By using the word ‘dog’, I’m employing an abstract concept, which amounts to saying that Bob is similar to other things in the world in certain ways that are determined to be relevant i.e. he has four legs, a tail, he likes chewing on bones, etc… This is a concept or category we’ve introduced into our language because we find it useful for the purpose of describing these things we call ‘dogs’. But it’s easy enough to imagine a different language that doesn’t draw a distinction between, say, dogs and cats, and uses a single word – ‘dats’ – to describe both. So, the concept ‘dog’ doesn’t really exist in an objective sense.

Many people won’t ever give this much thought, and so they’ll unconsciously believe that popular concepts and narratives in their culture are in fact true. And this isn’t really a problem most of the time. However, if we find ourselves on the wrong end of one of these narratives, and we’ve accepted it as an absolute truth, then it can be profoundly disempowering.

I’ve begun to wonder if part of the reason I’ve felt so hopeless about my condition for so long is that when considered in the light of most of the narratives our culture has to offer, the only conclusions that can follow are… bleak, to say the least.

For instance, the narratives of modern medicine. According to this set of narratives, we are suffering from a serious syndrome of an unknown nature, which is currently incurable. Now, this is obviously true in a certain sense, within the scope of a medical/scientific understanding, but it’s not an absolute truth. It’s just one way of looking at the picture - one narrative. And by itself, it’s a deeply depressing one. If this is the only narrative we use to understand ourselves and our predicament, then we will see ourselves as sick people who have very little hope of ever not being sick people, and nothing more.

Let me clarify: it’s important, within the project of medicine, to use the categories of ‘sick person’ and ‘well person’. If such a distinction wasn’t drawn, it’d be impossible to determine when a medical treatment has been successful – you need to be able to say, “this person was sick, and now they are well”. But that doesn’t make these concepts objectively true. There can be other narratives, other ways of looking at yourself than just ‘sick person’.

As a simple example of how we can play with narrative, one thing I’ve found weirdly empowering is adopting the word ‘castration’ to describe my experience. It feels more dignified than both the medical term ‘erectile dysfunction’, which to me connotes a rather gloomy sense of failure, and the word ‘impotent’, which literally means ‘powerless’. Your mileage may vary, of course, but this has helped me in a small but significant way to feel a little better about myself, particularly when explaining my condition to others.

Also worth considering, I think, are our culture’s narratives around sex. I think it’s fair to say we live in a society which is sex-obsessed. Everywhere you turn, in advertising, in films, in TV shows, it seems everyone’s having loads of hot, steamy sex, or else wishing they could be having loads of hot, steamy sex. In our post-religious, materialist age, sex seems to have become so central to many people’s lives that it’s almost become the meaning of life; in the light of which, is it any wonder that a man who suddenly finds himself bereft of his sexuality would conclude that the only reasonable thing for him to do is kill himself?

But again, there can be other narratives, other ways of looking at the picture. Religious belief can, I believe, be helpful here, as it supplies narratives that can fill that meaning-void. But there are also non-religious philosophies, like existentialism, that argue for the possibility of a higher purpose in life.

Either way, whether we are religious or non-religious, if we are to claw ourselves out from the pit of despair I believe it’s essential that we find some source of meaning deeper than sex. And what this boils down to is finding different narratives, narratives that might allow us to unlock our experiences in unexpected ways and bring a renewed sense of purpose to our lives.

I’ll give another example. Being castrated is a fate I never wished for, of course, and has caused me many years of hardcore suffering. But lately I’ve been thinking about how it is also a unique opportunity. Not constantly occupied by sex and thoughts about sex, I have space in my mind and in my life for other things. I recently learned that some religious cults in history were made up of men who actually chose to castrate themselves for pretty much exactly this reason, so they could focus on what they considered important – obviously, in their case, God – without distraction.

Another narrative taken from history that I’ve found supportive is a concept from the traditional culture of the Aboriginal Australians. In their belief-system, called the Dreamtime, everything has its own ‘dreaming’, which basically means the purpose for its manifestation in the world. When somebody suffers terrible illness in their lives, they are said to have ‘sickness dreaming’. This is a terrible fate, but it’s also a gift, because very often, those with sickness dreaming are thought to be healers, as they come to understand sickness and how it affects a person in a very deep way which they can then share with others in the community.

These aren’t ideas I accept absolutely, just as the mainstream narratives of our culture aren’t ideas I accept absolutely. But I find that just playing with some of these different narratives opens me up to a sense of possibility, so I’m no longer so trapped in doom and despair. If anyone else has thought up or encountered any alternative ways of thinking about our predicament, please share.

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The most healthy way for myself is to think about this situation is as a “puzzle to solve” (like the most complicated puzzle from the game Inside x 1,000).

There are many working on the puzzle at all times fortunately, so each of us it not alone, however as individuals, we can collectively try to solve the larger puzzle together while also trying to solve our own puzzles by ourselves by using clues, knowledge, tools, and iron will.

I can provide some personal revelations that I’ve realized in this puzzle solving adventure:

-The sooner I get out of bed in the morning, the better
-Long walks is one of the most powerful tools I have
-Weight training is generally beneficial
-My poops look terrible
-Our minds can be our best friends or our worst enemies
-You will encounter naysayers and positive people along the journey

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I like that. It can feel so much like we’re alone in this, so it’s good to remember that there are so many of us all determined to beat this. Especially when you look on this forum and see how many really bright minds we have on here.

My poops are often pretty terrible, too.

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Another thing that’s nice about treating it as puzzle-solving is that it becomes a challenge. At very low points when I’ve thought about killing myself I’ve sometimes turned to a similar idea to get me through. I’ve told myself suicide is really the most boring, unimaginative response to the situation, and it’d far more interesting to see if I can live to find a way out…

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Can you share your “revelations” as I did?

Gosh, there have been so many… but I can give just a few.

  • Respect your limits, both physical and mental. Life with this condition is hard enough, there’s no point punishing yourself. You can’t just white-knuckle yourself into recovery. So give yourself a break.

  • It can be scary to begin with, but it feels so good to talk. You have nothing to hide and nothing to be ashamed of. You didn’t ask for this.

  • Don’t spend all your life focusing just on this.

  • …but also, don’t spend your life running away from it. Acceptance is the key to beginning to think about how to address the situation intelligently.

  • You may feel like you’re not a human being anymore, but really what’s happened is you’ve become more deeply aware of your humanity. Part of what it means to be human is to live in a body that can very easily be harmed or destroyed. We are vulnerable creatures. This realisation can, in time, develop into a profound compassion. You’ll look around you and realise that there are many, many people out there who have been damaged in some way.

  • It’s OK to feel sad, and to regret.

  • If you’re living with this, you’re a real man, more of a man than 99% of ‘normal’ men out there. You have to be made of steel.

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I can relate to everything you said. Spending all my time focusing on this is my greatest sin ATM. Even when I’m meditating and in my dreams this haunts me. I believe if I reach a deeper level in my meditation practice and continue with the practice for months I’ll finally get to a place where I can be “present” and not obsessed with these thoughts, but it’s hard hard work.

Also, I think that the “real man” thing affects many men and manifests in different ways i.e.: height, muscle mass, penis size, job, social skills…

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Yeah, worrying about whether you’re enough of a man is a probably a pretty universal thing. I don’t think it should always just be dismissed as ‘toxic masculinity’, either. To a certain extent I think it’s perfectly reasonable to aspire to traditional masculine virtues like competency, strength, resilience, stoicism. Not that I believe all men have to be like this, or any particular way at all. But for those of us that do value these qualities, I think it’s important to recognise we have them by the bucket load, in spite of and, in fact, because we have been robbed of our sexual potency.

How long have you been suffering? The main thing that’s allowed me to let go and focus on other things is the simple passage of time. But your meditation could possibly help speed things along.

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