Love in the time of brain injuries

Relationships are hard under any circumstances, but what if one partner suffers from a brain injury? Now, what if they both do?

Two years into my relationship with my partner, I suffered a minor traumatic brain injury after a day of snowboarding. For years afterwards I couldn’t keep up. I couldn’t bear loud noises, which discounted most bars and restaurants. I was tired all the time and struggled to keep up with conversations. Without work or sports I had little in my life to talk about or push for. I needed my partner to make me happy because nothing else did. I wasn’t the girl he fell in love with, and if I’m being honest, I wasn’t a girl I loved myself. We made it two years like this. He never stopped caring for me, but we didn’t know how to make it work. We just didn’t have the tools. Eventually, we broke up.

When we got back together, I was healthier, more independent, and hopeful about my chances for recovery. My boyfriend was doing well at work, and though loud noises still bothered me, I could go out to quieter restaurants or bring earplugs to ones that were a little more lively. I couldn’t be there for everything, but we had enough to share and to enjoy life together.

All that changed again after he fell off his bike and acquired a brain injury. Money got tight. He went through the same loss of identity as I had with no job or activities to discuss or share. I came to appreciate how hard things had been for him after my injury: This wasn’t the man, or the life, I had fallen in love with either.

We had an advantage, though. I was, and continue to be, grateful for everything he had been through with me in my early stages. On my more challenging days I would turn into the person he was six years ago for strength, if he could do it for me, I could for him. The loss of income was hard – he couldn’t take us out or treat us at home like he had – but I didn’t feel like I was holding him back any more, either.

In fact, I fell in love with him more. It is easy to be in love when life is fun. When all you have is a Netflix account and a couple cans of tuna? That’s when the little things count for everything. Every little touch as he passed me in the kitchen or every moment he stayed positive when he could have lashed out mattered all that much more. I developed new respect for him and counted myself as one of the lucky ones. We didn’t have much, but we loved each other enough to not let the stuff we didn’t have get in the way.

I told you it wasn’t your usual love story, but it is a love story nonetheless. The truth is, none of us are born with the inherent knowledge of how to make relationships work. We have to learn. In our case, we did. We learned how to communicate because there was so much we needed to talk about. We learned how to do little things to show affection when we couldn’t afford expensive gifts or nights out. We learned to read between the lines of an outburst and appreciate a smile or a stolen kiss for what it was: everything the other person had to give in that moment.

Every brain injury case is different and every relationship has its own challenges, but as a couple who has navigated this injury from both sides – both as caregivers and survivors, in a relationship that worked and one that didn’t – this is the Top Ten list of what we have learned. This list is worded for couples, but I believe any type of relationship could benefit from most of these lessons.

1. Learn how to communicate: This doesn’t just mean saying what you feel as you feel it. It means learning how to clearly tell the other person what you need or what you’re concerned about and learning to hear what they are saying back to you.

2. Give only what you can: Working on your relationship is important, but so is putting effort into yourself. The stronger you get, the more you will have to give.

3. Be your best self today: Some days your best self is going to be taking on the world and some days it’s going to be changing out of your pyjamas. Making that small effort is not only going to help you keep pushing forward, but it will also be greatly appreciated by your partner.

4. Appreciate the small things: Doing as many little things for your partner as you can during the day improves mood, and builds resiliency for when the big stuff hits. Likewise, appreciate them when you’re on the receiving end. If your partner sticks a cupcake wrapper to a pipe cleaner from the kids’ craft box instead of buying flowers because money is tight, take it for what it is – a way of saying, ‘I love you and we’re going to keep going.’

5. Remember both roles are hard: Brain injury doesn’t just change the lives of the survivor, it changes the lives of everyone who loves the survivorl. That means being extra forgiving on the bad days, for both caregivers and survivors.

6. Ask why – a lot. Ask yourself why when you find yourself getting mad at your partner. If the stress or pain is getting to you, it’s important to deal with the big picture problem of finding new coping strategies instead of waging a proxy war over who should take the garbage out is going to be much more beneficial in the end.

7. Plan for the changes. Things are going to change, but it doesn’t mean everything has to stop. Keeping current abilities (or symptom triggers) in mind when making plans leads to far less stress and disappointment and allows you to do much more as a couple.

8. Get used to being alone. All the planning in the world won’t change the fact that there will be some events that survivors just won’t be able to make it to. In these cases, partners – get used to going out solo. And survivors, let them go. Keeping them at home won’t make you feel better, but they may miss an opportunity to relieve some stress, which can lead to resentment over time. When you are feeling better you can always plan an event that you can both share to make up for it.

9. Learn to be flexible.This one is hard for those of us who live on a schedule, but the affects of a brain injury can last for years, or even a lifetime. Instead of waiting to get back to the old you, try to change together. Find a new lifestyle that adapts to your abilities. If things go back to the way things were then that’s a bonus, but at least you didn’t lose all that time in between.

10. Celebrate small victories: When everyday is a challenge, everyday has little battles which can be won. Celebrating small victories helps you focus on the positive and gives you an excuse to do something special together.