When Brain Injury Takes Away Your Emotions

People often assume the hardest part of a brain injury is the physical damage. The speech difficulties. The wheelchair. The things other people can see.

For me, it’s none of those things.

The hardest part is that I no longer experience emotion.

I understand emotions intellectually, but I can no longer feel them in the way I once did.

For a long time, I thought my greatest challenge was memory loss. Following a ruptured brain aneurysm in April 2024, I lost more than 14 years of my life. When I first woke after surgery, I told my wife, “It’s all right. I’ll just make new memories.”

It sounded logical.

What I didn’t understand was that memories aren’t simply facts stored inside our heads. They help construct our identity. Our experiences, relationships, successes, failures, joys and losses gradually shape the person we become.

Without those memories, and without the emotional threads connecting me to those that remain, waking up felt like being born at 50.

Everyone else knew who I was.

I didn’t.

The Missing Nourishment

Since then, I’ve found ways to adapt to many of my disabilities.

I use notes and reminders to compensate for memory problems. I use technology to support my cognitive difficulties. My legs no longer work properly, so I use a wheelchair.

These things don’t restore what was lost, but they provide a workaround.

There’s no workaround for emotional disconnection.

There’s no app that can give me back emotion. No device that can help me feel joy, sorrow, empathy, compassion, satisfaction or fulfilment.

There is no wheelchair for this.

Imagine waking up tomorrow to discover that you have your own private chef. They can prepare anything you desire. Every room contains all the food you could possibly want, and you may eat as much as you like.

But no matter how much you consume, you remain hungry.

You never feel satisfied. You never feel nourished. Eventually, eating becomes another chore, something you continue doing because it’s necessary for survival.

That’s the closest analogy I can find.

Life continues all around me. There are birthdays, anniversaries, family gatherings, conversations, photographs and days beside the sea.

But the emotional nourishment never arrives.

Constructing the Moment

Recently, my mother entered respiratory failure as a result of motor neurone disease.

My wife was trying to respond to a message from my sister and asked me what she should say. I gave her facts. I spoke about respiratory muscle failure, the difficulty of clearing mucus and the limits of what medical staff could do.

Everything I said was accurate.

None of it was what a son should say or feel when his mother is approaching the end of her life.

I wasn’t hiding my emotions.

I simply couldn’t reach them.

Most people don’t have to consciously construct an emotional response. Someone tells them something painful, frightening or joyful, and they respond instinctively.

I have to analyse it.

I listen to what someone is saying. I work out what they may be feeling. I consider what an appropriate emotional response might sound like, and then I try to communicate it.

While other people are experiencing the moment, I’m constructing one.

That process is utterly exhausting.

It feeds directly into the cognitive and brain injury fatigue I already live with. Some days I struggle to find words. Sometimes I stutter. On other days, my speech deserts me completely.

Communication is already difficult. When words are also expected to carry emotions I can’t feel or naturally express, the isolation becomes profound.

Recently, I attended a family birthday barbecue. As more people arrived, the pressure of trying to follow conversations, interpret emotions and respond appropriately became overwhelming.

My anxiety increased. My Functional Neurological Disorder symptoms worsened, and I had to leave.

I came home alone and went to bed to recover.

I didn’t leave because I disliked the people who were there. I didn’t leave because I didn’t care about the occasion.

I left because trying to connect with people takes everything I have.

The Silence Within Relationships

There’s another difficulty that’s harder to admit.

I can’t speak openly about this with the people closest to me.

My wife understands that I have memory loss. She understands that I can’t remember our wedding or many of the years we shared.

But how do I explain that I can no longer emotionally connect with those memories?

How do I tell my wife that an anniversary has meaning intellectually, but that I can’t access the feelings that are supposed to accompany it?

How do I explain that this doesn’t mean she’s unimportant to me?

How do I tell my children that my inability to experience emotion isn’t the same as an absence of care?

An honest conversation could cause enormous pain. The people I love might hear emotional disconnection and understand it as rejection.

So I remain silent.

I participate in anniversaries. I attend family occasions when I’m able. I take photographs, make conversation and try to behave as the person others remember.

I maintain the appearance of normality because I don’t want the damage inside my brain to become damage inside the people around me.

Existing Without Belonging

I’ve written this not for sympathy, but because this reality is so poorly understood.

We often think of disability as physical. We look for the wheelchair, the tremor, the damaged speech or the person who can no longer walk.

My experience has taught me that some of the most disabling losses are entirely invisible.

For 50 years, I thought life was primarily something we lived physically. It was about where we went, what we did, what we achieved and what we could build, repair or control.

Now I understand that much of life is experienced emotionally.

Emotion gives meaning to memory. It creates attachment between people. It provides satisfaction, fulfilment, pleasure, grief, compassion and belonging.

It turns existence into living.

You may never fully recognise how much emotion connects you to the world until that connection disappears.

Without it, I often feel like a satellite drifting through space. I can see life continuing beneath me, but I can’t return to it. I can observe people connecting, laughing, grieving and finding meaning in one another, but I remain outside that experience.

I still carry out the tasks written in my diary. I still do what needs to be done. I still try to fulfil my responsibilities as a husband and father.

But there’s no satisfaction when something is completed. No sense of reward. Nothing that makes it feel worthwhile.

There are workarounds for my memory. There are aids for my mobility. There’s technology to help compensate for some of my cognitive difficulties.

There’s nothing that reconnects me emotionally to life.

I don’t have an answer for how a person lives without that connection.

I only know what it’s like to wake each day, stand outside the emotional world that seems to connect everyone else, and continue doing what matters while drifting through a life I can see, but can no longer reach.

#Dustywentworth

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