Follow us: hu Improving life after brain injury Need to talk? 0808 800 2244 Donate Home About brain injury Individuals Brain injury and me Anne Johnston Share your story Share your story with us to help others affected by brain injury Anne Johnston How long can I expect my partner to put up with me while I have a brain injury? After hitting her head while sledging, every aspect of Anne's life was changed by the lasting effects of her post-concussion syndrome, including her relationship with her partner John-Paul. How could a relationship built around shared passions like photography and hill walking survive, when Anne could no longer do either of these things? Here Anne reflects on how post-concussion syndrome has changed her relationship, and what it has taught her about love. I’ve been living with post-concussion syndrome for more than seven months now and recently I’ve questioned my ability as a partner. How long can I realistically expect John-Paul 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 had been building up and they came to a head when I forgot our anniversary. JP had mentioned our anniversary was coming up soon but because I don’t have a good grasp of time, it felt like months away. It’s not that I don’t know the date of our anniversary, but even though I write the date in my journal every day it doesn’t sink in. So I was scrolling through Facebook when up popped these memories. A montage of photos I’d posted a year ago with lots of our hill walking adventures. JP got up really early that day and 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. 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 hill walking that brought us together. I was a wedding photographer who wanted to hill walk to photograph the views that you just can’t see from the roadside. JP was good at hill walking and wanted to get into photography. We started off as friends and, as they say, the rest is history. Much of our lives as a couple revolved around photography and hill walking. These days I sometimes struggle to literally put one foot in front of the other, never mind climb a mountain. As for photography, I still have the intention of taking photos, but all that intention doesn't make it happen. It's thanks to friends that are also photographers that come and take me out from time to time, or someone asking me if I’ve been out with a camera that makes me think "oh yeah, that’s a good idea!" It’s been over seven 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. 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 need JP in ways I never thought I would All the little jokes and trolling we used to do to each other vanished. I couldn’t speak in words with more than three syllables. They didn’t exist in my vocabulary. I couldn’t understand a lot of conversation, never mind what a joke was! 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 hill walking adventures together any more. What will our lives together as a couple look like if we can’t do that anymore? We’re not married but we’re totally doing the 'in sickness' bit this year. When do we get to enjoy the 'and in health' bit too? What my brain injury is teaching me about our relationship But through all of this I've come to realise 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. I know that the things that brought us together will be the same things that will get us through my recovery together. 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 going gets tough 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! This story has been adapted from Anne's blog, Finding My Sparkle. To read more of Anne's posts about the realities of living with post-concussion syndrome visit https://findingmysparkle.co.uk/blog/ Back to stories index You, me and brain injury: Relationship changes after brain injury Find out more 7 top tips for helping your relationships after brain injury Find out more Syreeta Find out more Friends of Headway Individual membership Join/Renew Contact Us t: 0115 924 0800 e: enquiries@headway.org.uk Help us improve life after brain injury. Donate Improving life after brain injury 0808 800 2244 Call our free helpline 9am - 5pm, Monday to Friday. 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