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What my brain injury is teaching me about love
Day 170: Monday 20th August 2018

I’ve been living with post-concussion syndrome for over 5 months now and recently I’ve questioned my ability as a partner. How long can I realistically expect JP to put up with me while I have a brain injury? Is he going to get fed up and leave me? What if I’m never able to lead the same life we did before my accident?

These are all real fears that have been building up and they came to a head yesterday.

 

 

Post-Concussion Syndrome made me forget our anniversary

It was thanks to Facebook memories yesterday that reminded me it was our 6th anniversary yesterday. JP had spoken recently about our anniversary coming up soon but I don’t have a good grasp of time. It’s not that I don’t know the date of our anniversary. Even though I write the date in my journal every day it doesn’t sink in. To me August feels like months away.

 

 

So up popped these memories. A montage of photos I’d posted a year ago with lots of our hillwalking adventures. He’d got up really early to do the Kiltwalk and in fairness admitted he’d forgotten about it too. But my memory lets me down all the time.

People often tell me that they get forgetful too but like so many other brain injury warriors I know, lots of us are aware of how our memories used to be and how different they are now.

 

Anne Johnston and JP on Beinn a’Chrulaiste, Glen Coe

 

After my accident I started writing things down that I needed to do every day. Basic things like brushing my teeth and eating because I couldn’t remember. I forgot to look at the list so a friend suggested I should use the reminders on my phone.

But then I got so frustrated at the number of reminders I needed to use so in an act of complete defiance I stopped using them for a few weeks.

Bad idea!

Now I try to get the balance right. I still rely heavily on reminders but I try not to beat myself up about it and just accept that’s what I have to do now.

My brain injury has changed our relationship

Looking at the photos got me thinking about how our lives as a couple used to be. It was photography and hillwalking that brought us together. I wanted to hillwalk to photograph the views that you just can’t see from the roadside. He wanted to get into photography. We were friends to begin with and, well, the rest is history.

Much of our lives as a couple revolve around photography and hillwalking. These days I sometimes struggle to literally put one foot in front of the other, never mind climb a mountain.

And as for photography, well, it’s thanks to friends that are also photographers that come and take me out from time to time. I have intentions of taking photos but all the intention isn’t making it happen. Someone will ask me if I’ve been out with a camera and I’m like, oh yeah, that’s a good idea!

 

Anne Johnston and JP on the summit of Slioch, Torridon

 

It’s been over 5 months since my accident and there’s been points along the way where I’ve questioned why JP is still with me. Yes, we’ve been together for a long time and I know in theory that you shouldn’t give up on someone you love when they’re going through a tough time. But I never expected a brain injury to happen to me.

 

I need JP in ways I never thought I could

It felt like the dynamic in our relationship changed after my accident. I felt like JP had become my carer. All the fun in our relationship went out the window as I was in a constant cycle of eat, pills, sleep, repeat. I lost my independence overnight.

I needed him in a way I never imagined I would.

All the little jokes and trolling we used to do to each other were gone. I couldn’t speak in words with more than 3 syllables. They didn’t exist in my vocabulary. I couldn’t understand a lot of conversation, never mind what a joke was!

We’re not married and we’re totally doing the “in sickness” bit this year. When do we get to enjoy the “and in health” bit too? I’ve sought reassurance from him a few times recently and each time he gives me the same answer.

“Of course I love you, I’m not going anywhere and you WILL get better”.

I don’t know how many times I need to hear this. But when I doubt my faith in my recovery I need to hear this over and over again.

As my recovery progresses I am able to do more and have made great improvements in my speech and understanding but I still need JP a lot and that’s been hard to come to terms with.

 

 

 

I need him to do the shopping. I need him to help me with my pills. I need him to keep me in check and remind me that I need to stay at home for a few days as I’ve done too much today. I need him to massage my legs because they’re in so much pain. I need him to drive me anywhere I want to go. I need him for so many other reasons that I don’t want to have to need him.

This to me all feels very one-sided.

I’m stubborn and I’m fiercely independent and it took me a long time to realise that I needed help and how to accept it. But I don’t want to be so needy. I want to be able to care of him too but I don’t know how to do that. I have a brain injury. What do I have to offer now?

I feel guilty that his life has changed too because of my accident. What was a fun day out in the snow flipped both our lives upside down in an instant.

I fear that we won’t get to enjoy our hillwalking adventures together any more. What will our lives together as a couple look like if we can’t do that anymore?

 

What my brain injury is teaching me about our relationship

But through riding this shit-storm I’ve realised I’m incredibly lucky. I have someone in my life that loves me for me. Someone that is helping me through the toughest challenge of my life and teaching me what it is to love unconditionally.

It doesn’t matter to me that we’re not married. Our commitment and love for each other doesn’t mean any less because we haven’t exchanged vows in front of our family and friends.

And I know that the things that brought us together will be the same things that will get us through my recovery together.

Because I don’t know when it’s going to happen but one day I will be standing with JP on the summit of a mountain with tears of happiness streaming down my cheeks, giving him a big hug as we conquer a massive goal in my recovery. And he’ll cringe as I take more than a few selfies of us together but he’ll go along with it anyway because he knows that makes me happy.

I don’t know when that day will come but I have it in my sights and we’re coming for you!

When I’ve wrestled with my feelings recently a few friends have asked me what I’d do if the boot was on the other foot. There’s no way I’d jump ship on JP. I’ve looked after him after a knee operation through gritted teeth (his, not mine!) and I know that if it was him that suffered a brain injury that day I’d do everything I could to support him and be by his side.

 

I am more than a person with a brain injury

It’s been a tough realisation that someone would want to stand by me through my recovery but that’s what true love is all about. Yes, I have physical and mental challenges to deal with but a brain injury doesn’t define me as a person. I am more than just a person with a brain injury.

Post-concussion syndrome has impacted our lives massively but there’s been some enlightening moments all the way too. It’s not about showing your perfect lives on Facebook. It’s about who is by your side when the shit really hits the fan and will be there not because they have to, but because they want to.

I can’t climb mountains right now but it doesn’t mean that it won’t ever happen again.

And when it does, there’s only one person I want standing right beside me!

 

Anne Johnston and JP on the summit of Slioch, Torridon

 

Over to you, warriors!

Has living with a brain injury changed your relationship? How have you dealt with it? 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 daily 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!

Much love,

AJ x

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