Guest Blogs · Living with someone who has a brain injury

Living With Someone Who Has a Brain Injury: Guest Blog Post, Stephen and Naomi

Naomi (the founder of Alphabet Brains) suffered a extradural haematoma, fractured skull and fractured jaw after a fall down the stairs in 2013. She met Stephen three months after her brain injury.

What is the hardest thing about living with someone who has a brain injury?

Being empathetic towards Naomi; the most trivial task, experience of event can be a hugely different experience for her. Trying to understand the struggles that she has and accommodate them while not being overbearing and sometimes condescending is very difficult and often causes friction between us.

What daily struggles do you both have and how do you help each other with these struggles?

You’ve likely read most of this before from her blog posts but the things I notice the most are memory, fatigue and a short-temper.

I can be frustrated by having to miss out on things or cut things short due to her fatigue and the need to rest often and take entire days “off” (Sitting in the house doing very low energy activities).

Ultimately these things all combine in us having very frequent arguments/rows, which I doubt I’d be having with someone without an injury.

How is your communication?

It varies hugely to be honest.  For many years now it’s been fairly good but not amazing. We communicated about as well as any relationship I expect. Recently though, due to us reaching something of a turning-point, communication has improved massively. We got to the stage in our relationship where things weren’t going so great and we were fighting quite a lot. We realised something had to change.

I feel like we had become complacent over the past year-or-so and as a consequence we’d undone a lot of the hard work which we did initially during therapy/counselling. We’ve consciously made the decision to be a lot more forthcoming with our feelings and frustrations recently and I think that this has helped a lot. I wish we had done this sooner, or never stopped in the first place.

How much do you understand about your partner’s brain injury?

Technically very little, but I feel that the very little that I do know puts me well above average. The doctors and academics are great at telling you what symptoms may occur and the likelihood of them but in terms of living with someone with a brain injury—there’s no substitute for experience.

Had I been told years ago just how different life would be and just how tough it would get sometimes I would have been very surprised and might not have believed them. It’s one thing to read on a piece of paper that somebody might have a short-temper, noise sensitivity and fatigue but that won’t prepare you for dealing with a person who’s fatigued, in a loud public place (bar, cafe), becomes frustrated that they can’t string a sentence together and lashes out angrily. Only experience will help you deal with situations like these.

How has your financial situation been since their brain injury?

I’d be lying if I said we hadn’t fought about money, mostly because we didn’t know how slowly she’d be able to return to work and how difficult it would be. In a non-brain-injury world it’s probably quite reasonable to be upset at somebody who bounces from job-to-job and can’t bring in a steady wage to help the household but this may be one of the outcomes of their accident.

Immediately after being discharged from the hospital Naomi went back to work in search of some independence and a full-time wage. With hindsight this was a tremendous mistake and meant that her life immediately after surgery was much worse than it would have been, with lower expectations.

It is likely that your partner can’t work as much as they used to and probably not as well. It may be tough but you must try to find a balance between quality of life (and recovery) and your financial position. If you don’t have the privilege of being able to do a less taxing job, cutting your hours or even taking some time out of work completely then it may be tough.

What is one thing you would change if you could?

I can’t answer this question. I can’t even answer this question personally. I’m fairly realistic and realise that the situation we’re in won’t change overnight and dreaming or wishing that this-or-that was different won’t make anything better. Change the things you have the power to change and let the universe work the rest out.

What do your friends and family think of your living situation?

I don’t know. I’m not too interested in their opinion. I’ve seen anything from jealousy to disbelief, admiration to bewilderment and everything in between. If you’ve got friends (you can’t choose your family) who are interested in asserting their beliefs about your home life then I’d suggest you choose some different ones.

What little things do you do for your partner with a brain injury to improve their day-to-day life that they don’t know about?

We work together for the most part, I don’t think I do anything that she doesn’t know about. I think that clear and open communication is the best advice that I can offer. If she needs something, we work out together if we can do it and if we can, we do.

How do you feel about meeting your partner after their brain injury?

It’s tough. We’ve even discussed how differently my life and hers would have played out had we not met together. If I’d have known before if when we met how tough the road ahead was going to be I’d probably not have stuck around, but now that we’re here (5 years on), looking back, I’m doing better than I was back then and so is she. What ifs aren’t my style… Carpe diem?

Have you learned anything from living with someone who has a brain injury?

Empathy. I mostly spent my teenage years and early twenties in my own bubble. I lived my life for myself and assumed that everybody else was doing the same. Now I realise that there can be a lot of things going on behind the face that you see every day at the shop, pub or office and that anything from a smile, a polite greeting to a larger gesture can mean a lot to somebody and we should all just be nicer to each other.

What are the positives of living with someone who has a brain injury?

I know a lot about brain injury! Joking aside, I can’t say that there are any. It’s going to be hard for both of you and you shouldn’t sugar-coat that.

Selfishly, in terms of my own life though there have been some positives. As I mentioned above in the “What have I learned” it’s improved my character greatly. I’m now a much more rounded person, more empathetic and mature. I feel that I can cope with pressure, stress and challenging situations more now having had lots of practise at home!

What advice do you have for other people in similar situations?

Read the words above and understand that it’s going to be a long and difficult road. Your partner isn’t going to get better overnight, and may never fully recover. Also remember that this is a person who you love and have chosen to spend the rest of your life with. Remember the Christian wedding vows? “in sickness and in health”? You’ve been unlucky, this is one of the “in sickness” situations, but remember how much you’d appreciate the help if the roles were reversed and it was you with the injury.

This is part of a new project to raise brain injury awareness and to help others with a brain injury. Living with someone who has a brain injury: A series of guest blog posts.

Ask the person you live with to answer the questions listed in this post, you can find a copy of them here, email answers to afterbrainsurgery@gmail.com, the answers will then be shared on the website along with others.

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