Brain Injury: Refinding Purpose

An Initial note about how irritating positivity can be

I have a very fine line to tread here, between giving positive advice and seeming dismissive of illness altogether – the ‘buck up and you’ll be fine!’ bollocks that well-meaning idiots come up with. The latter is never my intention.

So I will clarify: Brain injuries are often impossibly tough to deal with. Many times during my recovery I gave up, I decided that it was too difficult and I couldn’t cope. Unfortunately, simply giving up didn’t help much, the problems didn’t go away, so I had to carry on.

For anyone going through this now, my heart goes out to you, you have absolutely every right to think Fuck your positivity! My life is shit! And when you are feeling like that, this blog probably won’t help. However, there will be other times, when you feel a little more able to make plans and hopefully I can pass on what I learned about how to do that.

pictures 9
Some drawings I did while recovering

 

Losing the Things I Loved

With the BI, one of the toughest things to come to terms with was that I could no longer do the things I loved. I was struggling so much with getting my brain to work, that I had to give up studying; my job as a gardener; I couldn’t read books; I struggled with seeing my friends; I couldn’t even think of going on an adventure to a new country. I felt that everything that made me happy had been taken away from me and that there was nothing in life I could enjoy. This was a distortion of my situation, maybe an understandable one, but one that didn’t help me at all. I still had people in my life that I loved, but what I needed was purpose, without that everything felt meaningless.

There are three points to this blog, they take time to be fully understood (or at least, they did for me), but I believe they are crucial to being happy when recovering from BI:

  1. Your situation now, is not your situation for ever. Try not to think about what all this means for the future, the important thing is to find a way to be happy and calm now (not just for happiness’ sake, but also for your health), and one way to do that is to find something that will engage you, stimulate your mind but not stress you. Any more complicated questions can be left for later.
  2. Happiness lies in having purpose and that comes from investing time and energy into something and then getting something back out as a result. The two ‘something’s can be almost anything
  3. There are infinite ways to live your life, even with massive restrictions, there are many passions to pursue, and many ways to get a sense of purpose, but you will never discover this if you are focused only on what you have lost.

Notes on Happiness

pictures 13

I believe that happiness and meaning in life are far simpler to achieve and far less restrictive than we are trained to think. You do not need to have a relationship, career, kids or money to be happy. Those things can all make you happy, but they can all make you unhappy.

I think the reason for this is that it doesn’t matter what you invest your time and energy in (eg children, a career, painting, learning French, collecting thimbles) so long as you make an effort and get something in return (love, success, beautiful pictures and the joy of painting, knowing French, a beautiful thimble collection).

  • If you don’t invest time and energy, but get something out anyway (I imagine being the child of rich parents is a little like this, without any effort you can have whatever you want) then you will feel there is something missing, an emptiness.
  • If you invest time and energy into something, but then get only bad things in return (for example, when the child you’ve loved and nurtured says she hates you, or your boss ignores the project you’ve been working on, or if you decide you actually hate thimbles) then you will feel your passion has been wasted and you will be unhappy.
  • If you invest energy in nothing and get nothing, you won’t be happy at all.

Being ill does not change this, but it can make it tricky. It may be that the things you invested energy in before the BI are either no longer possible, or no longer bringing you joy, and this is why you may need to find new passions.

Infinite Passions

pictures 10

When I was ill, my frustration came from thinking that the only things worth doing, were the things I could no longer do. However, the truth is they were just the things that I had been doing up to that point, they were not better or any more conducive to happiness than the things I was eventually able to do after I got a BI. It’s true that taking up new passions was extremely difficult, and I worried that I’d never be able to enjoy them because of that, but luckily that isn’t how enjoyment works.

Having to invest more energy into doing something can, with time, make it more enjoyable than when something is easy.

Some tips on finding new passions

  • Experiment, try as many different things as possible: painting, writing music, getting a penfriend, sending postcards, knitting. You may hate many things that you try, or find that you aren’t able to do some of them, but there will be something that you can do.
  • Pay attention to what other people are doing and copy them. Ask your friends and family, look online (here’s a Wikipedia list of hobbies )
  • Revert a little to childhood. With a BI, you have the perfect excuse to pursue hobbies you loved as a child. Play with Lego, draw cartoon characters.
  • Don’t compare your ability now with what you could do before. For starters, if you are just setting out on a new skill, it will take time to learn to do it properly. For seconders, although having a BI can make things massively difficult, it can also give you a unique perspective on  whatever you pursue. Personally, I’d rather be unique than good.
  • Use technology – there are now so many apps that can aid a new passion, it’s worth exploring them to see what’s available. I have a friend who has become a master at creating beautiful music using free instrument and editing apps. .
  • The Internet is an incredible aid. Even people who have grown up using the Internet, tend to stick to the same kind of sites that they’re used to. Instead go exploring. With a BI, change and unfamiliarity can be quite unnerving, but the Internet is a fairly safe place to be adventurous in. Take it slow, read blogs that suggest sites, use sites like Stumbleupon, bookmark anything interesting you find even if you can’t cope with looking at it the time. Plus forums are a great place to meet and connect with people.
  • Approach any new activity without the expectation of a specific end result. Even more tricky is that you might not enjoy the process of what you’re doing at first, but don’t give up for that reason. Once you have mastered the basics it gets easier and you can start actually enjoying it. I took up drawing at this time (some examples are in this blog), I’d done an art degree years before, so my expectations were high. Often I hated what I did. It took months of trying different doodles before I found a new style that I both enjoyed doing and liked the end result. Some of the pictures from that time have ended up part of the Xogulano Islands blogs that I write about. They aren’t great drawings, but I love them because I don’t know anyone else drawing pictures like that.
  • Don’t dismiss something because you tried it before the BI and didn’t like it. With a BI, your abilities have changed, your passions may also have changed.

Final Advice on Investing your time:

  • Don’t have all your eggs in one basket. Almost any endeavor can fail, and if all your time has been invested in one thing, that can be upsetting.
  • Try not to be swayed/dissuaded by what society/peers tell you, you should/shouldn’t be doing. It’s irrelevant. It’s always irrelevant, because people are massively varied and the things that can make them happy are also massively varied.
  • Try to take into account how much energy and ability you have at any one time and try to have different interests for different levels of ability. Sometimes I didn’t have the energy to draw, sometimes I had enough energy to go out and take photographs, sometimes all I could do was shut my eyes and think up stories. It was good to have this choice. Because my memory was so bad, I found it useful to write down the options and then refer to them when needed.

Note: I haven’t dealt with motivation at all in this blog (I’m trying to keep them to a manageable size) although I’m aware that with a BI or just when exhausted from illness, motivation is a real problem. I will focus on it later.

As always, any comments, additions or questions are welcome.

 

 

27 thoughts on “Brain Injury: Refinding Purpose

  1. A lot of the same could be said for brain disease (known to many as mental illness). It changes your life. You can’t always do what you once did because you don’t enjoy it anymore. But take meds and experiment–you will find new ways of being happy.

    Liked by 2 people

  2. These are really practical tips, and i feel that they’re relevant to people without BI, too. I mean, obviously the point is to help BI sufferers, but i actually got something out of it too, so thankyou. Definitely a much better read than most * positivity* articles i’ve read, which generally consist of a bunch of wishywashy, lazy, pseudo advice that has no actual practical appplication in real life! Anyway….loving your drawings, too, as always.To me, they give the impression of being done by someone who’s in touch with their inner child ( important, IMO!). They remind me of secret codes and imaginary lands. Cheers for another interesting post!

    Liked by 2 people

    1. Thank you very much. It’s great if anyone can get useful ideas out of the blog and I’m really pleased you like my drawings – I think people often find them a bit odd, but they made me very happy to do, and I still love them now. I think at the time, secret codes and imaginary lands were very much in my mind 🙂

      Liked by 1 person

  3. Another great post. I can relate to when you talk about PTSD and people dismissing illness. I am really glad you are writing about it all, I know it must be hard.

    When I was recovering from something and was physically unable to do much and was suffering from things like memory problems (short term due to lack of oxygen to my brain) it was when I got back to cooking and baking that was a big turning point. At first I would bake a cake and then be too warn out to do anything for a few days after but I think it was the gateway to feeling normal and doing more.

    Liked by 1 person

    1. Yes! Exactly this! Baking isn’t something I thought of (I’m atrocious at it) but I know many people find joy and purpose in it. Thank you for sharing that.

      Liked by 1 person

  4. Echo all these comments. Love your drawings which, to me, look like circuit boards, in principle, not unlike our electro-chemical brain circuits although represented in a more Silicon Valley-type way. Oh dear, does that make sense?

    Liked by 2 people

    1. That makes a very interesting sense, an inspired idea. Love the thought that my brain was actively drawing its circuitry, maybe in the hope I would spot the flaws and fix them. 😀

      Liked by 2 people

  5. This simple philosophy of happiness is worth more than several bookshelves full of self-help books, and eminently practical. I agree with the other comments that the insight is universal. Looking forward to following your blog 🙂

    Liked by 2 people

      1. You’re welcome 🙂 Another thought I have is that a very common situation where the opportunity/ability to invest time and energy radically changes is divorce. It can take a while to adjust. Almost any “phase change” can do this.

        Liked by 1 person

      2. Yes, any major life upheaval can have that effect. I think what makes BI so shocking, is that the sudden change comes from inside you; YOU have changed, so your life changes, rather than the other way around.
        (Not to dismiss the effect of other life changes, just to explain a difference)

        Liked by 2 people

  6. Thanks again for sharing these thoughts, not just apposite to you or anyone else with BI but to everyone. And wonderful artwork / doodles / mandalas too — don’t know if these are sequential but interesting that the first is made up of discrete and often symmetrical (or near-symmetrical) patterns while the last two seem very concerned with connectivity, like synapses in the brain.

    Liked by 2 people

  7. Well stated. Any debilitating illness calls for a re-focus and attitude is everything (says one who has had to learn this over the past two years). Love your blog. You have managed to be an interesting person through your life challenges – kudos to you!

    Liked by 2 people

    1. Thank you, that’s very kind. I’m sorry you’ve faced serious illness yourself, although it sounds as if you have found the strength to find hope in it. I will wish you peace and good health, my friend.

      Liked by 1 person

  8. There is nothing worse than suffering, having your life turned upside down, inside out, and struggling with it all – and having those, whether they be strangers, or those close, who, for the sake of fairness, may be struggling with the effects and changes and may be well meaning, – who start spouting platitudes. Argh! It drives me right over the edge. So often the frustration of that “be positive, stay strong, blah blah blah” is the last thing one needs to hear – because in the moment, it would be far more understanding and compassionate to just admit to the “fear, the pain, the frustrations” and offer, “I don’t know or understand but I’m with you; what can I do?” But noooo!

    Sorry …. but I’m sure you know what I mean.

    “Brain injuries are often impossibly tough to deal with. Many times during my recovery I gave up, I decided that it was too difficult and I couldn’t cope. Unfortunately, simply giving up didn’t help much, the problems didn’t go away, so I had to carry on.”

    Had to carry on. And that’s the key, that eventually, many times over, as recovery begins, where the realization that even if we give up, life continues, we need to still go about things, even the simplest of tasks or necessities, and so, you try and succeed or fail, but you keep at it. And eventually, each moment that seems overwhelming, can be dealt with a little easier – but so many just don’t get it – because they take far too much for granted.

    You talk about the sense of loss. And this is HUGE. It’s such a trauma – and eventually, as the physical actualities settle down, you have to face the hard truths – the way things were before – can never be again. And coupled with the struggles and physical hardships, and the emotional mix – it’s very much like the grieving process – you throw in the “I want my life back” – and it becomes such a major deal. And you’re completely right – spot on – at some point, it’s about looking clearly at “the here and now’ – and trying so hard to just exist, be in the moment, and find sparks and interests and things that even if they seem “silly or mundane” will have to “tide you over” – until you accept may be these “things” can be considered as a starting point, that may lead to new possibilities, passions and interests. But damn it, is so hard. And so many people just don’t get it.

    “I believe that happiness and meaning in life are far simpler to achieve and far less restrictive than we are trained to think.”

    This is indeed – a huge key. It’s about accepting, knowing and believing, with absolute faith, trust, and conviction, that we need to “re-train our brains and minds” to think outside of the mainstream – because ultimately, the injuries have forced us to do this. But it’s a bit like spawning fish …. the need to do it is there – survival depends on this – but the current is so rough.

    OMG – you have an art degree?! LOL – I too studied fine arts years ago – and funny you should mention that you were never pleased with the drawings you did. I can so relate! And more to the point, I’m really glad that you are now comfortable with what it is you can do, and enjoy it. 🙂

    And since this reply is getting way too long – let me wrap up by saying, another great post – lots of information, technical and personal – and although both are important and add perspective, it’s your willingness to share the personal – especially about having “analyzed” and understood how to learn to “re-program our thinking” – seeking out new interests, the dedication to this process, as well as the positive (but not sugary or empty but rather honest), as well as offering the “smartest” gift: “self kindness, love and acceptance” that ultimately, it is possible to get through and find a way, or rather many new ways, of finding purpose, pleasure and happiness, after something as significant as BI or other serious injuries, while living with PTSD and a host of other effects.

    Be well my friend – and sorry for the excessively long comment!

    Liked by 1 person

    1. What a brilliant and well thought out response. I agree with all of it and I’m glad what I said resonated with you. The best thing about writing these blogs has been the replies I’ve got. Any illness can be incredibly isolating, which is frustrating when so many of the symptoms and struggles are universal. Be well too, and I look forward to future responses from you (and reading your posts also!) 🙂

      Liked by 1 person

      1. well thank you for sharing your thoughts – as you’ve said, so often we feel like we are alone, and it becomes so overwhelming, so when someone has the courage to share, it’s a good thing – it helps all around 🙂

        Liked by 1 person

  9. I found your writing and drawing really inspiring thank you! My ME often means I have trouble thinking straight and your insights are really helpful. Thanks again for sharing them x

    Liked by 1 person

    1. My pleasure, thank you for taking the time to comment. There are definitely a few parallels between the two conditions, and it’s good to know the posts are useful. I hope you are getting the help and support you need, and I wish you a peaceful and joyful day 🙂

      Like

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