This is an old post about My Beautiful Broken Brain (Netflix: Lotje Sodderland journeys into her own brain to recover and rehabilitate after a hemorrhagic stroke leaves her unable to communicate) from my personal Tumblr account, but after having a realisation on how far I’ve come since starting Alphabet Brains I want to share it on here.
This was only written in May (this year) but reading it back I can see how far I’ve come. I’d like to thank Alphabet Brains and the people I’ve met and spoken to along the way for that.
It is my therapy… I never realised that until now.
So, even though I have changed since writing this I still feel it’s important to share. Everyone with a brain injury goes through this. Even though I’ve changed I still have my bad days where I’m angry at everything—including myself.
Watch the trailer for My Beautiful Broken Brain here
This is probably the best time to write this as I’m back at Northgate hospital tomorrow and it will give me a good jumping off point. That, and the scene that I can’t get out of my head of Chuck from Better Call Saul smashing his head on the worktop. The rawness and the shock factor has stayed with me and I often think about it a few times a day.
Anyway, this post isn’t about that. It’s about a documentary called My Beautiful Brain, which is a documentary following 34-year-old Lotje after a haemorrhagic stroke.
This woman films everything which obviously makes for a great documentary but honestly? It made me jealous… After a year she was able to come to terms with her injury. She accepted that she was a different person now and she saw it as a new adventure, a new life. Finding peace in herself and the things that happened since her injury astounded me, especially after only a year. 3 ½ years later and I’m still not there.
I feel like having the 24/7 footage of herself helped a lot. Imagine being able to notice all the little changes and the smallest bit of progression through watching yourself at every second of your life. I feel like I only noticed the big changes because my memory was so fleeting, I couldn’t feel myself changing. Seeing herself changing must have helped a lot.
I still feel anger and sadness about who am I now and how easily I can be defeated due to my chronic fatigue. (I remember I was so naive leaving hospital, I thought my brain surgery was like a broken leg and it would be better after a few months)
While watching I couldn’t stop thinking to myself ‘is her language like my fatigue?’ and it made me feel really bad! Here’s this woman who can’t talk properly and has forgotten how to write and here I am feeling sorry for myself because of fatigue. Then I remembered something… Everyone has their own problem, it’s theirs and theirs alone. It could be the smallest thing to someone else yet the biggest and most important thing to you.
When I was in group therapy, I thought I’d made a friend but as time went on he just made me feel worse and worse about myself. Always reminding me that his injury was worse than mine and I should be thankful because of this. Well, I don’t speak to him anymore.
As much as each brain injury is different most of the things you experience afterwards are pretty much similar:
- Little sounds are so much louder, you hear everything. (Someone a few metres away opening crisps, the vibrations of phones, the clanking of cars keys, footsteps, basically any small sounds most people don’t hear are a grinding in your head)
- Strangers voices all group together and feel like they’re shouting at you.
- You are in your own world, feeling isolated from everyone around you. (“I woke up in a world I didn’t recognise”)
- No one understands but you and it’s impossible to even begin describing how you feel.
- You must try to not compare yourself to how you were before.
- Finding the therapies a constant reminder of what you can’t do, rather than what you can.
There is one scene where she’s at a family dinner that got to me the most. Everyone surrounding her is laughing, drinking, talking and walking around and she’s sat on a chair kind of curled up, head on her chin, tired, gazing into the distance looking lost in herself. If someone asked what if feels like to be someone with a brain injury just show them that clip. That is exactly what it feels like most of the time.
The tag line from the film poster ‘Life is like a dream’ is so perfect. In the early days/weeks I got so confused between dreams and reality.
I seem to focus solely on my fatigue, as that is the one thing that really frustrates and upsets me. Constantly working out what I can and can’t do because of how it will affect me.
I guess it’s good for me to not think about the other problems a lot. I’d probably have no self-esteem if I did. I’ll list them for the sake of this post though:
- Mixing left and right up.
- Confusing my words.
- Placing shapes in the wrong place (Like after I clean the hob I can never put the hob rack on the right way even though I do it loads…like a child who hasn’t quite figured out how to do a jigsaw yet)
- Remembering new things and them staying in my head.
- Walking into a room and forgetting why (I know this happens to a lot of none damaged brain people, but it seems to happen more than it should)
- Headaches (Honestly, I just see them as a part of my life now – the only thing I’ve come to terms with! Oh haha)
- Taking too much information pretty much makes my brain turn off.
- All the things from the first list (the sounds most of all!)
This has turned out longer than expected, so well done for anyone who didn’t get bored and thanks for reading! It feels good but it also drains me when I write long emotional things. Hot chocolate and a film now I think!
Things I’ve learnt from this documentary:
I need to see myself as I am now and only as I am now. No more comparing myself!
Even though it seems impossible at the moment I need to come to terms with my fatigue and learn how to handle it better (I think I’m doing a good job though! But it’ll be nice to see if Northgate can help me any further with it)
This will probably never happen BUT…come to terms with it all. See myself as someone with a beautiful broken brain and not a damaged and ugly brain.