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Say what?

Latest blog from: hopegoesupanddown.blogspot.com - a record of the hope, terror and unknown future faced when the one you love most in the world suffers a brain injury.

Firstly, I apologise for any typos in this blog; I have scratched my cornea and so have one working eye and one swollen, gummed up eye. It's quite a look!

Today's blog, with or without typos, is about words...and frustration...and patience...and forgiveness...and laughter...and love.

When someone suffers a severe brain injury it is easy for those looking in from the outside to assume that it mainly affects the owner of the injured brain. My experience though is that when your partner suffers a brain injury, it affects every single aspect of your partnership; it changes the shape and nature of that relationship and you'd better hope it's a strong one or it won't survive.

I am lucky that I found my perfect match in Jake, so I know it will survive, but the the way our relationship has shifted is extreme and presents endless challenge. It is not 'his injury' it is 'our injury' and that is the shape of our relationship now.

"Every brain injury is different"; this is something we hear every day and I know there are tens of millions of people across the globe dealing with uniquely and unimaginably changed relationships and lives due to brain injury. The biggest challenge we continue to face is communication.

It doesn't matter that it is Jake's communication that has changed; communication is a two way process (if it's done right) and without understanding there is no communication.

Jake is suffering from aphasia in both his expression and understanding, which in practice means that he doesn't understand what I'm saying and I don't understand what he's saying. This is worsened by his lack of insight and how tired or overstimulated he is, but you often don't know that this fatigue has become a problem until it is too late. Add to that the fact that we both absolutely believe we are clearly communicating but can't make ourselves understood and really, does it make any difference whose head is injured?

The outcome for both of us is frustration, resentment, confusion and, more often than not, hurt. Oh, and guilt; Jake feels guilt because on some level he knows that he has changed and believes it is 'his fault'. I feel guilt because it is my job to take care of him and help him in his recovery, not snap at him because he has repeated the same nonsensical message for 2 hours without a break. You cannot imagine how stressful this is for both of us; we never used to shout at each other before our injury and I hate that we do it now.

What I can tell you is that when these moments of frustration erupt we always make peace. This is what what makes us the perfect match and why I know that whatever it's shape, our partnership will survive. We have kept hold of our patience, forgiveness and love...and we always end up laughing, even if it's slightly hysterical!

With or without our injury I wouldn't swap this relationship for any other.


1 Reply

Coming from one who frequently lacks insight, I feel (or at least I think I feel) how frustrating it must be for you at times. Just the fact of lacking insight frustrates me. My wife has to make sure she has my full attention before we can communicate or the interaction and probably the subject of the discussion will end in metaphorical tears.

In a way perhaps we're luckier than you in that no adjustment was needed - my injury and most of my rehabilitation came long before I met my wife. Then on the other hand I worry that she didn't know what she was letting herself in for, and she has a right to expect my brain to function normally (which I know is just guilt and/or frustration preying on my mind).

We love each other too though...I'm sure she is on the receiving end of some of the same frustrations you feel, and we just have to roll with the punches a little bit...we both need to blow off steam at times, but as long as we forgive afterwards it keeps it healthy (and hopefully it will set a good example to our children, too). In an ideal world, perhaps one could argue that that wouldn't be necessary, and one would be right, but our situations are far from ideal, and nobody is perfect...so we just each allow the other to be imperfect and not let it get in the way of romance...sounds like you already have the hang of that, too!


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