Selfselfself: Brain Injury etc

DISCLAIMERS: This is intended as the first of series of posts talking about B.I. and PTSD (I hope to release one a week), but I am not good at writing about myself, I’m not comfortable with it, therefore they may come across as cold or clumsy, I’m sorry about that.

I am only writing from my own personal experience, which may be narrow and/or inaccurate. I welcome any addition or dispute in the comments.

Something happened a decade ago and it keeps pestering my head, oozing itself into mundane moments, when I’m working, when I’m cooking dinner. The thoughts are always there, ready to seep and I think maybe it’s because I never did what I swore I would do – share what I learned to help other people in the same situation. So, here in a lumpen fashion, is my beginning, hopefully it will get smoother as time goes on…

Ten years ago I was in a bad accident. My heart stopped, the flow of blood to my brain stopped, organs ruptured and I got bashed up. The two enduring problems as a result of this were that I got PTSD and a brain injury. A year after the accident (from now on known as P.A. Post Accident) my IQ was tested and found to be below 80. Three years P.A. and I was still spending a lot of my time in bed, mostly unable to listen to music or read, often even unable to open my eyes, but with my mind never resting. Five years P.A. and I read my first book (I could read short things before this). It was a Mark Steel book, but I have no real memory of it now, except that it was an intensely difficult but beautiful joy. At that time, I also started working as a volunteer at a wood. A year later and I was working part time as a gardener. Eight years P.A. I got the full time job I have now, only one person there knows about the accident, although sometimes I get odd looks when my brain goes wonky.

Before the accident, I was always self-sufficient, somebody others thought of as capable in just about any situation. I loved throwing myself into danger, just to see if I could cope. This meant that I floundered and fucked up a lot, but I always found a way of looking after myself – somewhere to sleep, a job, food to eat. With the accident I lost all that, I became afraid of the dark, people, imaginary monsters. I relied on others for everything.

Before the accident I had never thought of myself as somebody in tune with my emotions or body, but I was. I knew how much effort it took to move, I knew what felt good, I knew how I would react in any given situation. I was familiar with the pattern of my own thoughts. I had emotional routines that I would follow without ever having to pay attention to what I was doing, I just felt, and connected with people. With a brain injury everything changed completely. I couldn’t eat what I used to, food made me feel ill. Everything smelt wrong and looked wrong. I couldn’t sleep. My body would do odd things, suddenly lurching to one side, contorting in bizarre ways or becoming completely paralyzed. My emotions became wild unpredictable animals that would leap out at me without reason. I would overreact to everyone and everything and then feel terrible for doing so. The inside of my brain felt wrong, the way my thoughts moved and connected was disturbingly unfamiliar. For a long time I believed utterly that I was an alien inhabiting this dead person’s body. I felt like an imposter with my friends and bored when looking at my old photographs. Plus I was in constant pain with no idea why.

That was all a lot to process, let alone to try and fix. Whenever I tried to focus on one aspect, to solve one problem, all the others mounted up. I was completely overwhelmed. I felt like I standing at the edge of the sea in a raging storm, just when I found my footing I would be picked up and thrown into the waves with no idea which way was up or how to grab a breath.

Working how to care for this new, bizarre, sensitive self took a lot of learning. Despite my crappy brain, I had to learn more about myself, life and the mind, than I had learned about anything previously. How to look after myself, how to act, what mattered. I found that all the doctors and psychologists I saw didn’t really understand my symptoms and I assumed that I was the one being weird. Having met other people with B.I. since, I’ve realized that while B.I. can affect people in an infinite number of ways, certain things I experienced are pretty common. I’m hoping that by passing on what I managed to learn, I can be helpful. I’m going to give it a go.

Some of the things I’m hoping to talk about in future blogs:

  • Understanding what the brain is and how it goes wrong
  • The basics of looking after yourself
  • The myth of getting better
  • True boredom and an ocean of time
  • Psychosis, paranoia and all that drama
  • How to talk to doctors
  • How to become a sick person, how to become a well person
  • Staying awake forever
  • Learning to do stuff again
  • The mechanics of belief

39 thoughts on “Selfselfself: Brain Injury etc

  1. Thank you for writing this.

    I can not imagine what some of the things you have written are like and my thoughts go out to you. However I have narrowly escaped death twice. The first involved organ rupture and the second, unrelated and 2 years later, was septic shock. So I can relate to some symptoms of PTSD and reading this, in a odd way, is comforting.

    Liked by 2 people

    1. Thank you very much for reading and replying, it means a lot to me.
      I’m sorry you’ve been through these really disturbing experiences, but I would appreciate any of your input on what I write about PTSD if you visit again. Wishing you peace 🙂

      Liked by 2 people

    2. Thanks for writing about your experience. I had a severe brain injury in 1999 (when I was 21) due to a combination of alcohol and skateboarding. I spent three weeks in the hospital and was released into the care of my mother.

      She took me to my hometown and from there it was all downhill. I ended up addicted to drugs and alcohol, intermittently homeless, and suffering from seizures. It took me nearly a decade to regain some control over my life.

      I haven’t touched alcohol or drugs in nearly a decade. I am married and have a son, despite these blessings my head injury continues to plague me. I suffered a seizure in November and have been off work since as I cannot drive and my job involves driving.

      I look forward to reading more from you.

      Liked by 1 person

      1. Thank you for reading and responding. I’m very sorry you have gone through so much, but you’ve shown incredible strength in overcoming addiction and making a good life for yourself. I look forward to seeing you here again and reading what you have to say. Wishing you peace, my friend.

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  2. I’m looking forward to reading your posts! Not because these are things I’ve ever experienced (the closest I’ve ever gotten was my first panic attack in the ER where, although it was a freeway crash that totaled the car, no one was seriously injured), but because it’s worth understanding for the sake of people who have.

    Liked by 2 people

    1. I’m really glad, I was a bit scared about posting it, but anything to raise awareness and make brain injury seem a bit less alien to people (for the people who have it also) is a good thing.
      Thank you very much for your response and taking the time to read.

      Liked by 1 person

  3. Wow Ink. I would have never guessed at how much you’ve been through. Thanks for being willing to be vulnerable enough to let others know about your life, and hopefully, by doing this, someone, somewhere will benefit.

    Liked by 2 people

  4. Even though you will doubt yourself for sharing this, you should be proud. You’ve experienced so much and come out the other side. Keep taking care of yourself, and know that others are pulling for you. 😊

    Lovingly,
    Leona

    Liked by 1 person

  5. Wow! I can’t imagine the extent of the trauma and the pain, but in some ways I can. Your story is far more “critical” than mine – but there are similarities.

    I suffered a work related accident 15 years ago (cervical sprain which now means 2 herniated disks in my neck) and I suffer (slightly) from the PTSD from this and full out PTSD for others reasons. But I do understand, perhaps, clearly, not as profoundly as you, how “crazy” it is – the brain not wired correctly anymore, odd thoughts, strange emotions, the roller coaster up and down. The chronic physical pain, the sudden paralysis episodes etc. Nonetheless, perhaps you will find some ease and understanding and come to be a little more “settled” with how much your life has now changed – I know, it sounds and seems really nuts to say that – but it’s a hard truth to accept at times. And even though you may feel uncertain, or hesitant to share the “crazy train ride” of your experience, your willingness to do so, is going to help you, and others. So often we feel like we’re the only ones …. but we aren’t. And so, as you wish, as you can, when you feel up to it …. because your story is as unique as you.

    Liked by 1 person

    1. Thank you for writing such a warm, thoughtful reply. I’m really sorry you went through what you did. You experienced paralysis too? I’ve not met anyone else who did, I still don’t properly understand it. I hope to get more input from you in the future, your view of things, your experiences will also help a lot.
      Wishing you peace and happiness this Easter (and that goes for everyone who’s replied) 🙂

      Liked by 1 person

      1. I hope you too have good holidays this weekend 🙂

        Well, as I noted before, my injury is really different than yours, much less serious etc. in terms of what happened to me – but after my injury, although in terrible pain, I just figured … hot shower/bath, bundled up, ice-cold packs/ hot packs/ sleep and sure, I’ll be sore for a few days. Ha! So even though I was working through the pain of the injury on the day, okay wait – I haven’t said what happened – I was hit on the head by a window. Okay – crazy. 😉 A window that I had just firmly latched almost completely shut, was back-drafted closed and blown wide open by a sudden extreme wind gust and smashed into me – squarely on the head. Sounds crazy – is crazy.
        Anyhow …after the initial shock, dizziness blah blah, I kept working through the day, but couldn’t move properly on my left side – and by the end of the day I was walking around, staggering really, with both eyes in one socket – but honestly, I thought – nope, I’ll be fine.
        During the night, after trying for hours to settle myself comfortably and finally falling asleep, I woke up and within seconds, realized – I couldn’t move – any part of my body – at all. Technically I wasn’t paralyzed, but I was – but being such a crazy fool, I literally willed myself and body to move. Screaming as if Jack the Ripper was in town, it took me 45 hellish minutes to just sit up. You get the picture. Anyhow …. not to rattle on – now, after all this time, when I experience paralysis, it’s because the nerves in the herniated disks slip and the pain is like a lightening strike, the muscles in the affected areas go berserk, perhaps in self-defense protection, and I’m left in a semi-state of immobility of whatever part has “taken the hit.” It can happen at any time, any place and for no good reason.
        I’m not sure whether your physical injuries – well what they were and whether you have permanent damage to certain areas of your body etc. For example, my paralysis episodes can be pointed to the disks – direct cause and effect – but how you are affected, well, it would be hard to offer ideas or thoughts, unless you, eventually share more information.
        All I can say with any certainty is this: the brain – it is a very complex and mysterious system, that for all the leading scientists in the world know, it barely scratches the surface.

        Right … sorry about the longish answer here – but these things are never easy to explain in a few sentences. I really hope you are well and once again, I think you’ll find, that as you feel up to sharing your story, you’ll find all kind of support and sharing of information.

        Liked by 1 person

      2. Thank you for that, very interesting (and sounds terrifying) I hope you don’t have to go through this too often now.
        I never found out what was causing my paralysis, it was at least partly psychological and sounds very different to yours (as you say, the brain is ridiculously complicated, that’s why BIs are such a struggle to understand, I guess).
        I shall try and organise my thoughts on it a bit more and then post about it in the future.
        It’s been really nice so far to have responses and hearing about similar situations other people have experienced. I didn’t think it would mean so much. Peace and happiness to you my friend 🙂

        Liked by 1 person

      3. Yes, it would most likely be quite different, our paralysis experiences, but when you are ready to slowly begin to share, I’m sure you will begin to appreciate just how easier it gets to this. All in time.

        And I wish you all good things this weekend and generally 🙂

        Liked by 1 person

  6. While I haven’t had a brain injury, I have suffered from PTSD for a long while. Added to that is bipolar disorder and fibromyalgia. With that combo, I have periods of cognitive malfunction, balance malfunction, temporary paralysis, and several other issues. I can relate to your experiences in a small way. I think you’re awesome for talking about your experience even though it’s frightening and intimate. But the only way to guide someone else to understanding is by being as open as possible about what you’re going through. It helps, immensely, when one finds out that there are others dealing with the same things.

    Liked by 1 person

    1. Thank you for that, I’m sorry you’re going through so much, fibromyalgia must be very scary and frustrating. BD I’m a little more familiar with, but I’ve watched people close to me struggle with it a great deal. I hope you are getting the care and support that you need. Please come back and share your experiences in future, being ill is a steep learning curve, but if we teach what we’ve learned, then maybe it needn’t be quite so steep for the next person. Wishing you peace and happiness.

      Liked by 1 person

  7. Great post, it shows how much of a fighter you are! I wish you well and support! And I am looking forward to reading more posts, I like your writing style!

    Kind regards,
    Nadia

    Liked by 1 person

  8. Wow. You have been on quite a journey. It opened my eyes to how other people can have endured so much, and yet we make assumptions based on appearances that everything is and always has been okay with them. Best wishes to you as you continue to write your valuable words. A.

    Liked by 1 person

    1. Thank you for the encouragement, I’m glad you visited 🙂 I guess anyone’s journey sounds dramatic when the humdrum is trimmed away to reveal the bone. Your story sounds pretty intense also. Wishing you peace, hope to see you again soon.

      Liked by 1 person

    1. My heart goes out to your friend, how is she doing? If she has any questions that I (or anyone else replying on here) might be able to answer, please ask.

      Liked by 1 person

  9. Thank you for sharing this intimate part of yourself and enlightening the rest of us with what you went through. I had a friend who suffered a severe brain injury in a car accident, I only knew him after the accident and always wondered how greatly it affected his life.

    Liked by 1 person

    1. Thank you for your response 🙂 . I’m very sorry about your friend, I hope some of what I write helps you to understand him more. Have a beautiful day.

      Liked by 1 person

  10. This is very well put together. I’m really looking forward to future blogs on this, and learning more about these things.

    I am sorry that this is something you’ve had to struggle through. 😦 My best friend had a stroke a couple years ago, when she was only 24, and I could see how frustrating and emotionally draining recovery was for her. My partner has PTSD so I similarly see him dealing with that on a daily basis and how confusing and alienating it can be. Compared to your experience these things sound like a cakewalk.

    Obviously I can’t know but it seems like you’ve recovered quite a lot from those initial years, and I’m very happy for you for that. I never would have guessed that you’d survived a traumatic brain injury based on your writing — it’s very clear, very concise. Like I said, that’s not much to go on, but… I’m glad that you’ve recovered this far.

    Liked by 1 person

    1. Thank you very much for your thoughtful words. I have recovered a great deal and things are good. I am very sorry for your friend and partner and what they have been through/are going through, I hope you find something of use for them in my blogs. Warm wishes out to you and yours, thank you for stopping by ~~

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  11. Thank you so much for these words. Speaking candidly about your experience is a noble thing, and helps educate people about the experience of living with brain injury. I simply love your sketches inserted through out as well.

    I encourage you to continue with this blog! 🙂

    Liked by 1 person

    1. Thank you, that’s really sweet of you. I’ve really enjoyed doing this blog, and the responses I’ve had about the BI have been amazing (supportive, and with valuable contributions) so I’m happy to continue. I hope to see you around soon. 🙂

      Liked by 1 person

  12. Kudos to you for sharing such an intensely personal side of yourself – and thank you for doing so. It’s so scary to think about how quickly things can change, how easy it could be to lose ‘control’ of ourselves; but you seem to making your way back to where you want to be. Wishing you lots of strength and looking forward to sharing your journey.

    Liked by 1 person

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