"The recovery time for an injury like this is years and years. Gradually I’ve been trying to piece my life back together again"

Community Support Services Client

Brain injuries can have knock-on effects and be all-pervasive. My brain has to work so much harder, it’s exhausting because it’s working with an injury.

In hospital, I used to wake up with the question, “Where am I?” I would get up, look for clues, and then walk around. I thought I was held in MI5 or MI6 and I was kidnapped.

I’m an amnesiac. I had a brain injury in 2012 – I’d overdosed and my heart stopped which led to brain damage and a lack of oxygen to the brain. At the time I lost all of my memory but the rest of my brain was functioning.

I didn’t recognise my face or my name at the very beginning. I worked out I was in England because I saw a sign in English. I worked out I was male by putting my hand on my chest. That was how bad it was.

Physically I had a headache all the time. We didn’t know whether I’d require supervision 24 hours a day or not.

I didn’t trust people. At some point you have to by necessity but that doesn’t mean you’re comfortable with it. You’re like an animal – if you’re not in immediate danger you go with it.

The recovery time for an injury like this is years and years. Gradually I’ve been trying to piece my life back together again.

I was living with my mum for a while and then with a friend. But I wanted to have my own life, I wanted to be independent.

I’ve still got memory problems now, probably will have them for all my life.

I still don’t recognise faces, names. That process of realising your brain will never be the same again, the people in your life won’t be there again, you can’t go back to your job… Brain injury is life-changing. You can’t go back to your own life.

I was reliant on my mum to go to appointments. My benefits had been cancelled because I couldn’t go to my jobcentre plus assessment. I was assessed as ready for work but in reality at the time I just about knew my name. I was getting very very stressed.

I wanted to have a life. It was so difficult and lonely. I was physically isolated from people. Where would I go? I couldn’t follow conversation. It made it difficult to make friends and maintain old friends. Most people dropped out of my life. That was so shocking to me.

I had a Social Worker but I remember being disappointed and feeling at the time it wasn’t going to help, so I disengaged from Social Services. Now, my sense is I was unfair on them.

Having amnesia affects your emotional management. You’re like an animal. You forget the context. You’re more likely to have extreme reactions and be disinhibited. With extreme emotions you’re more likely to be in the moment.

If something is bad, then the positive is it can be good to forget, but the negative is you don’t deal with it.

It’s hard to engage with anything and enjoy anything. It’s hard taking pleasure in the moment.

Things you might have enjoyed as a normal person – you can’t enjoy. Like reading a book – you can’t remember any of it and so it’s boring as hell. TV programmes – I don’t remember the plot at all.

Technology really helps. I cope by writing things down, that gets me places. I set multiple alarms for an appointment and so I’m much more reliable now at going to them.

Now I find my memory is good at remembering over a two hour period. Once I’m in a different environment and dealing with new things, then my memory will rapidly decline.

I know where I live when I’m near there, but I don’t when I’m somewhere else. I’ve been on a comedy course for two years but I still don’t know where it is!

I hate to say this, but there is less joy in my life than there used to be. I go around in an amnesiac fog. There’s less there, but you’re aware there is less.

In the past, I’d taken life on – I was young, male, intelligent. I felt invincible. But the year before my injury I was unhappy and had a breakdown. I’d been so low. You don’t take a large quantity of dangerous substances if you’re happy. This is the best thing that could have happened to me – it was this or I’d be dead.

It was out of desperation that I got involved with Community Connections. I thought, “Holy crap, what am I going to do?” My flatmate was leaving - I was flitting between my parents’ and crashing at his. I needed a solution to that.

My support worker was really helpful. There were a lot of unknowns and I needed somewhere in the city centre, as I don’t recognise places, buildings, or buses.

We got me a private rented flat. That’s what I wanted and that’s what I got. I was expected to pay six months’ rent in advance. My mum paid it up front and I’m paying her back. My mum’s mum and dad’s mum had died – if they hadn’t, mum would not have been able to do that.

I’m really lucky. You can spiral out with a brain injury like this. If I didn’t have my mum, I’d have been on the streets.

My support worker then referred me to Community Links. My worker is lovely and has been really helpful.

It’s a process of discovery – what I need.

I know I want to live alone. That space is really important. I need an environment to be myself. And also prove to myself that I can do this – I can live on my own. Cook food without burning the house down, make the bills. I need to know I can manage on my own. That will help rebuild my confidence.

What I want really is a set of friends – cos that will help rebuild my brain. Social isolation and depression won’t help my brain. Loneliness has been the big issue. Friends can take time to make. It’s hard to build relationships. I can spend weeks without talking to another person.

You need enjoyment to help rebuild neural pathways. That’s essential to recovery. The comedy has helped. I’ve had to really work hard to stimulate my brain, otherwise I would vegetate. I have to rebuild my brain cells. I have to get my brain stimulated. I have to work harder for that.

To have a higher quality of life, social interaction is essential. If I don’t have that sparking off my brain, I’ll forget to buy food, pay bills, make an appointment. If my brain is not working in one area, it will affect other areas. I may as well be dead without it. That’s how society is set up. We’re not self-sufficient.

Brain injuries can have knock-on effects and be all-pervasive. My brain has to work so much harder, it’s exhausting because it’s working with an injury.

Right now, I recognise there are no easy answers. And I just have to hope that things will be okay.

I will have a shorter lifespan because my heart has been through so much and I have a higher risk of early onset dementia.

Lots of people are surprised I have amnesia cos they expect me to look different. Cos it’s hidden, isn’t it?  Very few people know what to look for with amnesia.

I’m definitely far better off with the support I’ve received. I’ve been seeing Community Links for just over a month. We normally meet in my support worker’s office. She’s helping me with a tenancy agreement – which is what I need right now. That’s brilliant. That’s what I need, to know something is in hand and I can just park it. I won’t have a sleepless night now.

I’m looking forward to the course at the Recovery College - ‘Making it up as you go along: Improvisation for confidence and wellbeing’. I’m open to seeing what happens, seeing it as an experiment – it’s worth trying. This will go with the comedy I do. It will make my brain work hard because it’s slower than it used to be.

I challenge myself. I want to have some kind of self-sufficiency – I don’t know what it looks like right now. It’s a long journey. But I just want to be on that journey.

Sometimes people just need help. But they’re still people. And just because you’ve got a condition doesn’t mean you don’t want to achieve things, doesn’t mean you are lazy, or don’t want love. You don’t want to be locked away somewhere – in a room or out of sight. You want to live – with all the ups and downs.

 

Southdown Homeless Prevention and Mental Health Support Service (Brighton and Hove) (previously known as Community Connections and Community Links) provides short-term, flexible and tailored support to prevent homelessness and improve people’s mental health and wellbeing. This support focuses on our clients’ immediate housing needs, and other areas that are impacting their lives such as mental health and wellbeing, employment, finances, and social networks.