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All the emotions of a year with a brain injury

It’s been a whole year since my accident and a whole year I’ve been living with my brain injury, post-concussion syndrome. I went away for a few days’ break to Skye so I could be somewhere positive and I wrote a journal on day 365 so full of positivity.

Since I came home I’ve been struggling with my emotions. March is Brain Injury Awareness Month. Well I certainly picked the right month to get a brain injury haha! I want to portray the truth behind my story so that you can see the ups and downs. I want to do my fellow brain injury warriors justice too. I know I’m seen by many as a positive force but I don’t always feel that way.

So I encourage you to read my positive journal entry on day 365 and I’m also sharing some of the thoughts I’ve been having since I came home. I want to share both sides of the story and would really appreciate it if you could share this to help reach others that might be needing help right now.

A whole year with a brain injury
Day 365: Sunday 3rd March 2019

365 days. I can’t believe it’s been a whole year I’ve been living with my brain injury post-concussion syndrome. What a rollercoaster the last year has been and I usually love rollercoasters!

I’ve learnt so much about myself over the past year and I never thought I’d say this but I’m actually feeling grateful for the lessons I’ve been taught and the person I’m becoming.

For sure, a brain injury was never part of my life plan but I do believe you can choose how to play the cards you’re dealt and I choose positivity and gratitude.

Grieving for the life I used to have before my brain injury

It definitely took a long time to feel this way. I spent months wrestling with my emotions, fighting to get my old life back and grieving for the person I used to be.

When I cried my way through a week of appointments after 7 months of living with a brain injury I just didn’t know how to carry on anymore. I couldn’t see a way forward and I didn’t want to. If this was my new normal I didn’t want it anymore.

I said to JP recently that looking back I never would have ended my life but it’s the closest I’ve ever felt to it. I just couldn’t go on as I was. I hated myself and the life I had. I hated needing so much help. I didn’t know how to carry on. My life was all about the recovery and everything I did was focused on that. What can I do to challenge my brain? What can I do to relax my brain? If I do x, y, z then surely I’ll recover quicker. With a timetable I was literally trying to hack my brain injury recovery. It’s all I thought about.

In the midst of all the tears and while I was desperately unhappy there was a nudge from my medical team to lift the pressure I was putting myself under and just look to do what makes me happy everyday. Out went the timetable and really the pressure I was putting myself under. I wasn’t focused on making a massive recovery, I wasn’t chasing my old life, I wasn’t trying to get it back and be able to do all the things I used to be able to. I stopped fighting against the brain injury and started fighting with it. If I needed a whole week spent lying on the sofa I did what my brain told me and didn’t feel bad about it.

Life became more about the here and now. I had goals but they were much smaller and about moving on from my current abilities, not aiming for the old.

 

Feeling proud of what I’ve achieved with a brain injury

And so a year to the day I fell backwards off a snow sled, I’m waking up in Skye, one of my favourite places in the world, with a sense of pride of everything I’ve achieved.

I’ve learnt to accept and ask for help when I need it. I’m truly grateful for the smallest things life has to offer. I have the most amazing family and friends that have seen me at my worst and are helping to pick up the pieces. I have an amazing medical team looking after me, helping me learn to walk properly, supporting me in my goals and giving me the tools to cope with my new normal. And I’ve made some amazing brain injury warrior friends, both at Headway and all across the world thanks to the power of social media.

I really feel I’m lucky and have a lot to be thankful for.

I don’t know what the future will hold for me but I’ve stopped worrying about it. What matters to me is the here and now, appreciating every moment that life has to offer. as healthy as I can be.

I reached out to a few of my warrior friends recently and asked them now they dealt with the anniversary of their brain injuries as I’d been warned it can stir up a lot of emotions. Kirsten from Concussions and Lawn Chairs said to see today as being the birthday of me v2.0 and to celebrate it like I would a birthday.

I love the idea of the new me being AJ v2.0! I lead a very different life compared to my old one and I’m completely ok with that. I’m all about embracing the slow lane baby!
 
Anne Johnston eating fajitas on brain injury anniversary
 

Will you wait for a life-change moment to change your life?

Now as I head off to celebrate my birthday, let me leave you with this.

3rd March 2018 changed the course of my life forever and I never saw it coming. Could today be the day you choose to change your life?

It’s a chance to draw a line in the sand, a chance to start over, find out what and who really matter to you, let go of the things and people that don’t serve you well, challenge yourself in different ways and find new experiences that fill your heart with pure joy. My wish to you is that wherever your are in your life right now you can take that chance on yourself. You can make big changes to your life if you want to. You don’t need a life-changing moment to change your life. The power is in your hands people!

Now I hope someone got me a mahoosive cake!

You can also watch this video I recorded sharing my goals after I went to the brain injury clinic last week:
 

Day 366: Monday 4th March 2019

Today is day 366 of my new normal. 1 year and 1 day of living with a brain injury. I went away for a few days to my favourite place to make my first anniversary a positive experience. Yesterday I handled well. No tears. Tonight I’m a crumpled mess hating that I have to go through this. If I do publish the journal I wrote yesterday which is so full of positivity, well, I’m just glad I was feeling that way yesterday. Meh!

It’s bothering me that 1 person got in touch to ask how I was yesterday. Just 1. Should I be bothered by that? I was away and didn’t get it until today but still. Did people think I was handling it by going away so didn’t want to bother me? Do people not realise it’s a big deal for me? I don’t even know why I care, why I need people to check in for that 1 day.

People say things with good intentions but I don’t feel “brave” or “inspirational”. I’m just trying to ride this fucking rollercoaster without falling off.

 

Day 367: Tuesday 5th March 2019

I feel like I’m being hit by another wave of grieve. I’ll just try to ride through it.

I know the PCS community totally get it and I’m grateful for all the support from them and from others that don’t understand but try to. I can’t be strong all the time and I need my warriors around me. Maybe I shouldn’t let the actions or non-actions of others upset me. I handled the anniversary well until I came home. Maybe it was returning to my normality or maybe I just magically expected people to know I was struggling. I’d just rather people said something than silence. Maybe I’m being vain looking for others to say something on this one day. How could they know it was the anniversary if I didn’t tell them? How could they know I’m hurting. I’m struggling.

The fact that my friends and family, warriors and people I’ve never met care gives me strength when I’m all out of my own. I know that people care all year round and I’m grateful for every person that has reached out to me over the last year and since I said publicly last night that I’m finding things tough right now. I’m only human and this is hard. I don’t have a choice whether or not I get to deal with this but I will let the emotions come and go and keep trying to fight with this when I feel able.

I was warned by others that an anniversary of a brain injury can be tough emotionally. I guess me going to Skye was the best way possible that I thought I could deal with it. I’m glad I had that time there because when we turned the corner into Elgol and I saw the view of the Cuillin I felt complete contentment. It felt right for me to be there.

Today I’m feeling sorry for myself and that’s ok. I’ve had people slide into my DMs on Instagram (in the nicest possible way!) and texts offering words of encouragement and support and boy I needed this. I like to be positive and be there for others that are struggling but I know I can only offer that to others when I’m feeling strong myself. I’m glad my brain injury fucked with my emotions and gave me the vulnerability to ask for help because when we’re brave enough to do that, there’s always someone listening.

My hope with these journals that I’m publishing today is that people who are struggling can read it and feel ok with their own emotions and have the strength to reach out to others to ask for help.

As I look forward to my friend Leigh visiting with her dog Craggan for lots of cuddles, let me leave you with this…

I feel like I’m a real life Humpty Dumpty and you’re all the king’s horses and all the king’s men. Thank you for helping to put me back together again.

Much love

AJ x

Over to you, warriors!

How have you dealt with the milestones in your recovery? What have you learnt about yourself living with a brain injury? Pop into the comments and let me know.

I know how incredibly scary life can be when you’re living with PCS but I don’t want you to feel alone. I’ve got your back and if you need to chat any time, please get in touch. You’ll also find me sharing my journey on Instagram so feel free to connect and say Hi!

And remember, you’re not broken, you’re finding your sparkle so do something every day that makes you happy!

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