Neuro Reflections 1 – Getting used to it

Everyone at some stage has to get used to something new. Sometimes the new ‘something’ is expected – a baby, a move of house, a marriage, a new job. Sometimes the ‘something’ is totally unexpected and unasked-for. An unexpected diagnosis or illness can be shocking, unsettling, and difficult to accept, let along get used to.

A stroke or a diagnosis of a neurological illness can be like this. It can pull the rug out from under us and in a moment change the way we thought our life was going to be.

(Perhaps surprisingly, it can also change things in unexpectedly good ways… but perhaps this doesn’t become obvious for a while. The change can go both ways.)

Every person I’ve ever met in my time as a Speech Pathologist – and in my personal life too – who has had a new diagnosis or has a stroke almost always experiences a journey that can feel confusing, challenging, lonely, and a whole lot of other things. The journey towards accepting what’s happening (‘getting use to it’) is always a very individual journey. The journey can take a long time or a short time and it can be full of conflicting things – dark trails through deep forests with tree roots ready to trip you up, then sudden vistas of bright sunlit valleys, followed by yet another dark path. Sometimes it can feel endless and you wonder where it’s all going to end up – what will life be like in 6 months, two years, tomorrow? Who will I be? How do I get there? People close to you often ask very similar questions. The future can seem very uncertain for everyone involved. To quote Carl McIntyre from his movie “Aphasia” – what happens to one, happens to two.

It would be disrespectful and dismissive to think a blog post could possibly do justice to the complexities involved in ‘getting used to it’. But there are people who know what it’s like. I’ve met a few in my time. Here’s what I’ve seen them do.

As with any journey, companions can be really important. A companion can be a friend, spouse, GP, neurologist, counselor, a support group, or an online community. A good companion listens, doesn’t assume they know what its like to be you, and guides you only if you’ve given them permission. They can sometimes help you see the next important thing… hope.

Hope. It can feel like the great unmentionable when you’re in that dark forest. But developing a sense of hope (and hanging on to it) is possible – hope that one day, things will be different, that you will feel differently to how you feel now, and that ‘getting used to it’ will happen, micron by micron perhaps, and that the new normal will settle in and you’ll begin to connect with your old self again. This is where being part of a support group can be helpful – you can see people at different stages of adjustment, whether it’s an illness or a stroke, and you can share stories of the journey with one another.

Another thing is time. Getting used to something unexpected takes time. There’s a certain degree of letting go of the old and taking on the new when something unexpected happens. This process doesn’t happen overnight, and this can feel frustrating. There’s no getting away from that. That’s another reason why companions can be helpful – to lighten the load while time takes its time.

There are many other useful things people do to ‘get used to it’. Maybe you have already discovered some of your own. If that’s the case, please share them!!

Some people are great adjusters. They find ‘getting used to it’ less complicated than most. Sometimes this is because they were always one of those resilient people who rolled with the punches. But not all of us are like that.

‘Getting used to it’ is often complex, sometimes misunderstood by those not directly involved, and perhaps frustrating, whether you’re the one who’s had a diagnosis or illness or if you’re a carer. Staying connected (with others and with yourself) is important, as is getting help when you need to. Everyone has to get used to something at some stage – sometimes we are able to choose what we have to get used to, and other times we don’t choose ‘it’ at all. What can make a difference is what we do after the unexpected strikes.

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