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Book Review – Family Experience of Brain Injury

The effects of a brain injury ripple out

If you had never panned for gold before but knew the only way to get back the person you love depended on you becoming an expert, you would likely put your heart and soul into the effort of becoming skilled at how to dredge each grain you could. In many ways supporting a loved one through their rehabilitation and recovery after a brain injury is just like panning for gold. You find yourself endlessly sifting through the debris field searching for each grain or nugget which represents the authentic person you knew before.

The pressure on families

Millions of families find themselves in this position after a loved one has sustained a brain injury. They have to learn to become experts in a field of knowledge they are not equipped for, and because you can’t pop a specialist in your top pocket, many people find they need an assortment of resources to help them through the journey. While many professionals include families in the rehabilitation process gaps often remain, leaving people to reach for support or information from a brain injury organisation or a local/online support group.

Even with this assemblage of resources on hand, people can still be left feeling as though they are on a cliff edge in a raging storm where the tumultuous waves are undermining the very ground beneath their feet. Being thrown into the chaotic world of brain injury is always ineffable, overwhelming and indefinable and no matter how relentless your efforts you can still find yourself navigating the same loops of this labyrinthine outcome of insult or disease over and over again.

Just as you think you have cracked one aspect of understanding, you realise that all you did was peel away one delicate sliver surfacing above multiple complex layers. Every question uncovers another because every answer is incomplete. Every answer will be from a unique perspective based on the exclusive experiences and knowledge of the source, and not all will match or identify with your distinctive needs.

There is no one-size-fits-all

So where does that leave you when your entire world has been turned upside down with few remaining stable parts?

While there is no perfect answer to this, there is a route to tackling this complexity and the starting place is to learn all you can about the myriad of commonalities existent in the convergent experiences of others.

‘Family Experience of Brain Injury,’ by Jo Clarke-Wilson and Mark Holloway, is a new book which does just that. It brings together those nuggets of gold you are seeking.

The book combines the lived experiences of families with the commentary of experts. Captured within the pages is the route to the gold mine entrance and you are led on a journey where you will quickly uncover one light bulb nugget after another. It is like finding the arsenal rather than having to find the raw materials to manufacture individual weapons.

The families who have contributed to this book have shared the essence of their journeys in the knowledge that we can best avoid painful pitfalls if we are prepared for them.

For those of you who find yourselves traversing the alien world of brain injury, you will likely have already travelled far enough to know there are no get-out-of-jail-free cards. If you feel the tug of quicksand under your feet, find yourself meeting one brick wall after another and your heart and mind are exhausted with managing the internal earthquake I wholly recommend you read Family Experience of Brain Injury.

Profound Insights

No one should be left isolated in their struggle to support a loved one with brain injury. The reality for families is very different from their needs. Possibly as few as 15% of families are guided through the rehabilitative process by experts and often find that even with help, it can be challenging to incorporate professional experience into everyday reality.

Driven by an often desperate need for answers and help many families are afraid to make decisions. Lacking in previous experience, they want what is best for their loved one and often struggle with knowing what this is.

Each step can feel trepidatious, and families can feel overwhelmed with the considerable changes that happen in the lives of everyone who has been touched by brain injury. Those profound insights gained by people who have already walked the path can help to prevent others from falling into the same pitfalls.

Sharing Experiences to Avoid Pitfalls

I have never come across a single brain injury resource that packs in so many different family experiences and is imbued with so much wisdom. There is a commonality among the pitfalls that so many plummet into and are unable to avoid because of a lack of foresight. Family Experience of Brain Injury helps to fill the gaps and prepares people for situations they will very likely come across themselves.

To be forewarned is to be forearmed

With expert input, the book clearly explains many of the confusing and complex outcomes of brain injuries helping families to understand better what their loved one is going through. In turn, this knowledge boosts understanding and promotes more confident decision making. Armed with insightful information, families can form a more precise and objective view of the circumstances they find themselves in. Moreover, they will know they are not alone and will feel less fearful of the unknown future ahead.

The wider audience

Family networks include close relatives and friends who can also benefit from understanding more about the experiences of those immediately impacted by the changes a brain injury brings. Very often, those who are on the periphery can struggle to know what they can do to help and often drift away because they don’t know what to do for the best.

Family Experience of Brain Injury can help everyone to get to grips with the changed realities and outcomes a brain injury can bring. There is no doubt that the wisdom in this book can help people to unite and be stronger in the face of what is often chaotic and always confusing change.

Packed with information supported by informed research, the book is also suitable for everyone who works in the field of brain injury. It is often noted by families that many of the professionals they deal with also struggle to understand the full impact of their experiences which can inevitably lead to feelings of being segregated or not included in the rehabilitation of a loved one. There is no doubt that family understanding and involvement is key to how well their loved one will recover as they are instrumental in providing daily love and support.

“Not only were these professionals coming into our house, telling us what we ought to be doing differently with Paul, but the conflict that I also had at the back of my mind (much harder to articulate, and certainly not tangible) was this sense that maybe I don’t know my son now, and although I should know my son better than them … perhaps I don’t. It was a lot of difficult feelings.”

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