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Looking back over March: Brain Injury Awareness Month 2017

Brain Injury Awareness Month is now over, let’s take this time to reflect and look back over the things Alphabet Brains has done to raise brain injury awareness.

Let’s start with videos. I’ve started to Vlog on YouTube!

The first video is about The Brain Tumour Charity as March 3rd was #WearItOut, a day where you can buy or make a bandana or headband to raise brain tumour awareness! In this video I’m talking about my headbands and what they meant to me after my brain surgery.

The second video is about chronic fatigue, a common symptom after a brain injury. Especially after a traumatic brain injury (TBI) I talk about what the symptoms are, how it makes you feel and how to manage your life around it so it’s not so daunting! As well as advice for family and friends.

As this was my first video and I was so nervous because of that I also wrote about my headbands in a blog post (as I can write better than I can speak!)

I also shared a video on #WorldPoetryDay by Rupi Kaur:

i don’t know what living a balanced life feels like

when i am sad

i don’t cry i pour

when i am happy

i don’t smile i glow

when i am angry

i don’t yell i burn

It perfectly describes the sporadic emotions you feel after a brain injury!

A few other poems that are also fitting:

Shared brain injury survivor stories daily

A beautiful song by Radical Face – From The Mouth of an Injured Head

Once you’ve listened to the commentary it becomes even more beautiful:

I just thought the concept of the connections people make, persisting even through brain damage… I thought it was really pretty and it was something I wanted to write about’

The importance of wearing a helmet!

My boyfriend fell off his bike on 26th March. He has a few scrapes and has broken his collar bone, but we both agreed it’s better to have a broken collar bone than a broken skull/brain.

Well Done Brain mug – £2 donated to Headway!

also comes in blue

Brain Injury Emoji Badge

Alphabet Brains business cards!

People always ask what I do, well Alphabet Brains is my full time job. I am so proud of this, but when strangers ask me what I do, I freeze… It’s such a personal thing to tell a stranger. I always feel like I’ve let myself and other brain injury survivors down when I don’t tell them about Alphabet Brains. Which is why I now have business cards, it takes the pressure off me and I don’t have to say much if I don’t want to. I can just hand them the card, because even though you have a brain injury, sometimes you don’t want to talk about it all the time, especially to complete strangers!

Plus it’s fun to leave them lying around for people to find and spontaneously become aware of brain injury.

Ongoing tweets about what chronic fatigue feels like

twitter.com/alphabetbrains

An amazing video by SBS Viceland:

‘How would you cope surviving a car accident only to be faced with the reality of living with a traumatic brain injury? We sat down with Dylan Czeladka, the 20-something who is doing just that.’

Let’s talk about mental health (Instagram)

Mental health comes along with having a brain injury… Becoming someone new after your brain injury takes its toll on you, trying to forget the person you used to be and enjoy the person you’ve become is not as easy as it sounds… It’s a constant struggle. I think tough days will always happen no matter how good you feel about yourself or your injury. It’s important to talk to move past the tough days/feelings. Saying something about how you feel is better than not saying anything. Whether it’s a private message, email or comment on here, a heart to heart conversation with your loved one or a meeting with your therapist, speaking helps. We are all in this together.

The Sad Ghost Club

We are all living new lives since our brain injuries. We have to keep moving forward, I know it’s tempting to look back and miss who you used to be… But we must keep moving forward to move past this feeling and enjoy the amazing brave people we’ve become. The Sad Ghost Club are right, ‘Keep going, you got this.’

Archer

Lots of things shared for brain injury awareness, I’m glad it was such a long month!

Please follow on facebook, instagram, twitter and YouTube to see ongoing brain injury awareness posts.

Last but not least I also shared daily photographs about Alphabet Brains and my brain injury through the Instagram challenge #MarchMeetTheMaker. A few of which included:

The reason I do Alphabet Brains

I do it for brain injury survivors everywhere who are struggling, feeling alone, need advice, are unsure of what’s happening to them and need people in their lives who know exactly what they’re going through. It’s a long, confusing, frustrating, upsetting and lonely world after a brain injury and I want to lessen these feelings. Especially as I went through all of them completely alone after my brain injury… It’s the reason I started Alphabet Brains. I know how horrible it is and if I can help people to not feel these feelings OR have other brain injury survivors to talk to who understands those feelings then I’m happy and so are the people who have been helped! Just knowing you’re not alone is such a big help. I see Alphabet Brains as a form of therapy for survivors, including myself. Thank you everyone!

Brain injury/Brain surgery books

Do No Harm by Henry Marsh is my favourite book about brain surgery. It definitely had an impact on me. I first read it when I was at a crossroads with my recovery. Trying to see how luckily I was but at the same time struggling to come to terms with what had happened to me and how I’d changed since my accident. The way Henry Marsh speaks about the brain and his patients is so beautiful… It’s the perfect mix of science and emotion. When Breath Becomes Air by Paul Kalanithi I’ve yet to read. At the age of thirty-six, on the verge of completing a decade’s worth of training as a neurosurgeon, Paul Kalanithi was diagnosed with stage IV lung cancer.

The raw life behind having a brain injury

My unfiltered life… The things I can comfortably share on here. Makeup free selfies where I’m fatigued and about to take a nap, my brain injury photos, my scar back when it still had staples on it, my recovery photos, all the raw stories I get from you guys and the way I can openly pour my heart out without judgement.

My helper

My lovely boyfriend Stephen, my helper in life and with Alphabet Brains. We met a few months after my surgery. On our first date I still had my scar and half a bald head hidden underneath a headband. I took it off and told him about my accident, at the time I thought that would be it he wouldn’t want anything to do with me but when I couldn’t put my headband on properly he said “It doesn’t matter, take your time” and ever since then he has been so supportive. We’ve been together nearly 4 years now. He’s my rock, he came to follow up hospital appointments with me even though he never knew me before which I loved. He knows me better than I know myself sometimes (especially when it comes to my fatigue!) and he puts up with me… Brain injury survivors know what I mean by that: ‘Love me when I least deserve it, because that’s when I really need it.’ He also helps me with the Alphabet Brains website when it all gets a little overwhelming! So supportive and proud of me and Alphabet Brains.

Thank you for reading!

One thought on “Looking back over March: Brain Injury Awareness Month 2017

  1. Your blog is beautiful. As a TBI survivor, still struggling with similar issues since October 2013, it is nice to know that there are so many others who face the same struggles. I do wish more people, doctors included, understood the struggles of daily survival after a TBI- even when the brain has physically “healed”.

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