What is normal anyway?

Written by Julie Taylor

There have been some very interesting developments recently in knowledge about the brain. More and more, we are learning how our brains work and for me that’s very exciting!

32 years ago I woke from a coma, completely paralyzed and I was told I would never walk again. I was  assured – in fact it was insisted on – by my doctors and surgeons that it was an indisputable fact that “once brain cells are lost or damaged, they cannot be replaced. Ever. That is the one part of the body that cannot regenerate. Once cells are gone, they are gone forever. End of story.”

But… Somehow I knew it wasn’t the end of the story.

I had this unshakeable feeling that they were wrong. Deep down I knew it with a certainty I can’t explain. I never once believed it. I must have been the most difficult patient! I knew I would see again and talk again. I knew my arms and legs would work again and just needed to recover.

Every day for weeks a young medical student would come and sit with me and explain this ‘truth’. He had been told – and believed – that my recovery depended on my accepting what had happened to me and it was his job to come and persuade me. Some days we were both in tears because?  I assume for him it was because I would not agree. It was probably more than that.

You can never know what is in someone else’s mind unless you ask.  I was young and had kids to raise and living left to do. What he was saying seemed ridiculous because I just knew that I would be OK.

When you’re standing in the dock in your suit and tie before the judge, you look like any other man. In your heart, in your mind, you know the mitigating reasons behind whatever it was that you did. You know your truth. You know your beliefs and what drove your interpretation. But… Can you explain it?  You feel misunderstood. You cannot put the right thoughts into the right words at the right time and the resulting feelings are incredible frustration and helplessness and hopelessness and even resignation. Emotionally you’re on a roller-coaster ride, close to tears or anger.

That is how it is for the brain injured. Often. That young doctor didn’t listen and, unbeknownst to me, it was the beginning of a trend!

You simply feel misunderstood. Most of the time. In court, your advocate, your lawyer, is there to try and explain your viewpoint. His job is to create an image of your reality that others can see and understand. If you’re lucky enough to have a lawyer or advocate with that level of skill and the time to do it, that is.

The judge listens some of the time. He certainly gets the basic facts. But then, like the world at large to a brain injured person, he assumes you are like him. He assumes that your reasons are the same as his reasons. He assumes that you see and experience and understand ‘the facts’ as he does and he makes his judgement accordingly. No mitigating circumstances. At least, not yours. There simply isn’t time to stop and ask and listen to, really feel, each person we meet.

Many people have had quite serious brain injuries but, because often you can’t see anything, they assume they must be just fine, despite their struggle.

Notice I said “you can’t see anything” and so “they assume they must be fine”.

The feedback we get from those we trust, such as our doctors (or those we love) is of monumental importance. If everyone thinks I’m fine, therefore I must be fine? (Although deep down I just know they’re wrong.)  I ended up feeling misunderstood on many occasions.

I wish it would become the norm to listen to how things seem to others. Ask questions. To try and see it from their point of view. No need to judge what they say: no need to be right or wrong.

For the past 32 years I have ‘carried on as normal’, as best I could. Intellectually knew I had had a serious brain injury. After all, it had almost killed me. But I was unsure of what exactly had changed? I was unsure of what my disabilities were. The feedback I got was ‘kind’ but cruel.

I remember one evening, having practiced for weeks, announcing to my partner that I could now stand on one leg! I stood up and showed him. With my eyes shut, I could stand on my right leg for 23 seconds and on my left leg for 25 seconds. I was so proud! It had taken months of struggle to get to that point. I sat down and excitedly asked him to do it too. Somewhat embarrassedly, he got to his feet.  After a minute or so he opened his eyes and sat down. I asked him if that was all he could do? Of course, it wasn’t. He could have gone on indefinitely. With each leg. My heart sank as I realized that I still had a long long way to go.

In the sense that I am still alive, I feel blessed and very grateful. And in the sense that I still look fine, with no obvious missing limbs or disfiguring marks, I feel lucky. Life is wonderful for me, no doubt about that.

But… It’s been a struggle. For sure. What would have helped?

As the population ages how could we change the care we give. 30 years ago, brain injury was rare. Now in 2017 it is very common. Chemotherapy leads to chemo brain: a brain injury. Stroke is a brain injury. In modern warfare, brain injury is the commonest form of injury – which lead to the current surge in knowledge about the brain (because of all the otherwise healthy young military to research with). It’s also possible that various environmental toxins injure the brain.

Not one person – not my doctors, therapists or friends – prepared me for fact that I would experience many such ‘heart sinkings’.  To be fair: how could they know when there was so little to see on the outside.

On the inside there would be many things that would be different and I had no idea.  Knowing more about what those things might be and how best I could deal with them would have helped enormously. Those experiencing brain injury today have great physiotherapy. Understanding of the effects of brain injury seems to be growing along with knowledge about the brain itself.

An essential part of recovery from trauma, physical or emotional, is a good counsellor. We need time to go through our own thoughts, out loud or in writing, and very very slowly, with another human being. Somehow it makes a difference – all the difference – if another human being witnesses our growth and pain and life. We also need that person to be willing to give us accurate feedback. Email counselling is great – in some ways, probably the best. Occasional online Zoom or office sessions would be good too. For me it has helped having several different counsellors and mentors.

What is the learning from this?  A good friend of mine becomes physically more and more disabled throughout the course of each day and then starts anew the next morning. Her muscles get weaker and weaker and sometimes she’s in bed, unable to speak or swallow, by late afternoon. She cheerfully told me how she sees it: “With me, it’s my legs that are like noodles when I’m tired! Everyone can see that easily. With you, it’s your brain that turns into a noodle when you’re tired. Perhaps you need to put a big bandage on your head!”

Ask patients/people how you can help. They may well ask you to lead their recovery but asking them first, giving them the control of their journey, is a healthy start. Surround yourself with accepting and non-judgemental people. Design your life the way it needs to be. If there are difficult people you can’t help but include in your life, make sure you have enough support too.

Remember that it’s quite possible that you – or a friend or loved one –  received a significant brain injury at some time, from a bump or fall that seemed relatively symptomless. Be aware that criticisms of ‘loud’ or ‘inappropriate’ or ‘thoughtless’ or even of  ‘impulsive’ or ‘angry’ or ’emotional’ or ’emotionless’ or ‘too quiet’  may well be signs that you are dealing with – have dealt with – a brain injury.

Today I know, thankfully, that indeed it wasn’t the end of my story!  The brain is remarkably plastic! More than any other part of the body – perhaps – the brain can adapt to our needs and morph and change the way it works to better serve us.

I can not only walk but co-ordinate my movements and dance! I can run and jump and swim and drive! It’s taken longer than I imagined: I thought recovery would be done in a week or two. It’s been 32 years and I still experience improvements and realize that I’m still not done!

Now, on reflection, I wonder how that differs from any other person? Perhaps for some, aging or natural deterioration is not so sudden but I think that similar changes still happen. The lines become blurred and I can no longer tell where I meet the pre-injured me. My hope is that healing – or personal development – goes on right until the last day of our life.

When I was 28 my physical abilities – or disabilities – were very noticeable. I walked with my head down, body stooped, holding a cane for balance. For a short while I looked elderly. Now, as I approach 60, I look around and see that I am actually in better shape than some of my uninjured friends. Perhaps this is because I’ve concentrated on giving my body the best care so that it can heal itself? I’ve learned which supplements are best; I’ve controlled my weight; I walk with my head up and back straight; I listen, naturally engrossed, when people share their innermost thoughts with me.

As a society, I would also love for us to have more compassion for each other. It’s so easy to saddle someone with your (wrong) assumptions. Once we start on the slippery path of being misunderstood, it can so easily grow into something more. Something worse. My sons all accuse me of ‘being too soft’ and making excuses for bad behaviour. My logic is this: if the goal is to stop the bad behaviour, then the quickest way to achieve that goal is the way to choose? Stubbornly sticking with ‘what’s right’ may not be the quickest way to achieve that goal.

I invite you to have a look at this article: in those who have not been able to meet all of society’s rules – the incarcerated – the rate of TBI is seven times higher… http://www.scientificamerican.com/article.cfm?id=traumatic-brain-injury-prison&WT.mc_id=SA_emailfriend Food for thought?