Barry Cusack: My body and mind

When Barry Cusack failed to return home from work after telling his wife he was on his way back, alarm bells began to ring. With no memory of the exact cause of his accident in 2015, all Barry knows is that he hit something on the road and was thrown from his bike, causing a severe brain injury that had widespread, long-term effects.

He said: “I was forced to relearn skills such as washing and eating and I had to cope with many ongoing effects like anger, memory problems, balance problems and emotional changes – sometimes I just start crying and I can’t control it.

“I found myself questioning my role in society. I couldn’t and still can’t work because everything takes me such a long time to do.

“My family had to come to terms with the fact that the Barry they knew left for work one day, and came back five days later as a different person.

With the right support including from family, friends, his employer Jaguar Land Rover and a hugely positive approach, Barry has now reached a point where he accepts and lives positively with the ‘new me’. He has become a highly respected member of Headway Sefton, mentoring people who are in the early stages of recovery by sharing his experiences.

“It takes me a long time to work out how to do things,” said Barry. “But I take on many of the house and garden jobs now by writing things down to help me remember. To cope with my anger problems, I’ve taken up mindfulness which has been a big help.

My wife and daughters have been amazing too, they know how to speak to me and support me to do things. I recently started volunteering at the local hospice where my wife works. It’s been a touch of normality again and a huge confidence boost.

During the earlier stages of his recovery, when he was dealing with all of the negative feelings around his situation, it was suggested Barry write down his thoughts to help him to process and put them in perspective.

Here, we share one of his powerful, moving and motivating accounts of the journey to acceptance after brain injury...

My body and mind

For me like everyone else it was normal. One part of you would decide to do something then another part would analyse it and say ‘yes you can, this is your brain working as it should’.

The big, long bit that your head sits on is told OK big fella, were off, let’s go. All this is done effortlessly in one motion - this is you, you are one thing, one person, thinking and moving like a well-oiled machine - all is good.

Until this well-oiled machine is involved in a major trauma - in my case a cycling accident. Now the little bit and the big, long bit are not together anymore, there’s a separation, they’re on two different paths, there on their own. This once well-oiled machine is now broken and badly damaged.

Now the biggest battle they have ever had to face starts here with no idea of what they will face or what they will have to deal with.
They don’t know yet but this journey they are both on will involve physical and mental pain, tears, heartache, doubt, lonely days, and frighteningly, even longer lonely nights.

A state of mind finds you and you’ve never felt this type of feeling before it becomes debilitating and it stops you from functioning, it consumes you, engulfs you, and you have no understanding yet of what this is.

At this very early stage after your crash, you don’t know that your head has taken a massive hit and your brain at this moment isn’t functioning properly, and the massive impact that it will have on your ability to recover.

Very often you end up rolled up in a ball crying, broken feeling alone and worthless. I gave this state of mind a name and I called it THE DARKNESS, and it will always find you.

If you leave the door open it will come, you have to learn to keep it at bay, if possible. You have to manage your brain to keep it active, keep it busy and to stop the negative thoughts from coming and taking over.

This is easier said than done. Your brain now doesn’t work like it once did. Now your thought processing is slower it doesn’t store information like it used to. Your ability to focus has dropped your memory is not as sharp. You need all these taken-for-granted-skills, but when your brain has taken a bang and is now officially damaged the thinking process becomes very tiring and this is called mental fatigue.

What this term means is that it’s your mind getting tired not your body and when this happens the brain takes over and starts to shut you down, it forces you to rest. It does this by making your body feel tired, so you stop what you have been doing and rest. At this time, you are at your weakest and most vulnerable to the demons. Your emotions are laid bare your brain is tired and if you switch off completely the Darkness will find you and all the upset starts again.

This process of learning to manage your condition is absolutely exhausting and it is a constant battle, a battle you must engage in, or your mental recovery will go backwards, and you mustn’t let that happen - not just for yourself but for the people you love the most - your three girls.

As a person growing up you will know your limitations be it mentally or physically, and to improve in any area you will have to put extra time and effort in. I’ve always had the belief of ‘you only get out what you put in’, and you don’t get anything for nothing be it family, work, or personal life. Try to be honest, truthful and don’t live a lie.

As for myself it’s trying to come to terms with the fact that physically, but more so mentally, I have changed and having to accept these changes is tough. The emotional ongoing process not just for myself but for my family, for them to see their husband and father crying and struggling to remember things, to become aggressive and sharp in tone, to be not quite the same person they love, can be very difficult for them to watch.

The physical side, the broken bones the fractured skull, the hole in my forehead, the damage to my face and teeth and inner ear, they will heal in time, but as far as the mental healing goes it’s not a case of ‘there you go, you’re fixed now’.

I’ve been told by The Sid Watkins Neuro Unit that this is you now, you will have more than likely have changed, your mental processing will have changed it will be slower than before, the ability to prioritise things, to read and store information, the loss of focus to able to hold and follow conversations you’re engaged in will become more challenging for your brain to deal with, and lastly some of your memories will have been lost and the ability to remember recent things will be a struggle.

For all the above there has been a noticeable change in me, now it’s a case of learning how to manage this change with all the help, support and a lot of patience I’ve been given over the last weeks, months and two years. I feel better armed to deal with this fight.

What you can’t do is give up, but also what you must do is learn and come to understand that pushing too hard mentally and physically can do more harm than good and set you back massively. You need realise that both body and mind need to be given time to recover. Both will need different lengths of time to heal. But also, be aware that one part of you will never be the same again.

It’s now about time management, a duty of care to yourself for the best results going forward. The little bit and the big, long bit need all the help they can get. So be gentle with them and don’t break them. Accept that this could take some time and be prepared for the long haul, the tears, the upset, but always be ready to talk and share, keeping things to your self won’t help you on the long road to recovery.

The biggest thing to deal with is the acceptance side of your trauma. To accept that you are different now - your personality, your emotions and the way you think have all changed, not all for best yet, but with honesty and support and your willingness to engage wholeheartedly in any support offered. hopefully you will improve and begin to enjoy your life again.

But never forget that this battle will never end and never, ever stop, so always be ready to keep the Darkness away and enjoy your life with the people you love the most.