I offered to do a speech the other day at Russell’s Hall Hospital for medical professionals and students. The whole premise was that my mother and I stood there and talked about our lives as carers. A few topics were covered, including general statistics, my brothers, our family, mental health, hospital and local services, and our finances.
Now that I look back on it, I realised, perhaps, that I should write about it also. People tell me it’s enlightening and that I “did so well; you should be proud”- all the usual praise that people feel the need to give you, but that is not why I’m doing this. It’s for my own satisfaction and for the understanding of others. In a way, it’s a very cheap, public therapy session.
So, we started with the usual national statistics of carers across the UK. However, in this case, national statistics aren’t of interest to anybody but I’m going to list them anyway for your own education.
There are over seven million carers in the UK alone, which would equate to one in ten. Three in five people will be carers at some point in their lives in any capacity, even if they do not realise they are. 42% are men and 55% are female. In 2010, the BBC found there was an average of 700,000 young carers in the UK. Around 68% of them had been bullied at some point in their lives. Only half of them feel that another person or adult understands their home life. Moreover, an average of 48 days of school will be missed a year to care for someone at home. This comes from a lack of services that fund young carers, especially part the age of eighteen, shown in 79% of carers who will not leave home due to a lack of support for the person they care for.
In these points alone, I can already understand and relate to all of these points. There were times when I felt I could have been bullied but luckily, I’m not easy to bully. I tend to argue back or just outright ignore what someone is saying to me. So, I’d say bullying was not something I encountered frequently but they tried. As for days missed at school, well, it was never that great once I got to sixth form but that was due to my mental health rather than my caring role. But I’m one of the lucky ones. I can leave home and live my own life. To a certain extent.
In life, there is generally one pivotal moment that changed your life. For some people my age, I suppose they still have a lifetime to have that moment. I had mine when I was six.
That day I was sitting in school and I was told my mother went into labour. That moment changed my life in dramatic proportions that only those who have been in that situation can understand. From the moment they were born to the end of their/my life, my whole existence will always revolve around them.
It was like having children when I never had one nor agreed to care for one.
That one pivotal moment comes with two names- Harry and Thomas. When people say the whole world doesn’t revolve around one person, that’s how it feels when it comes to my younger brothers. My world will always revolve around them, as long as they’re on this earth.
If my mother hasn’t already told you the story ten times, my brothers were born at 25 weeks old and as she puts it, only one week after the abortion limit. They could fit each of them in the palm of your hand, they were so small. But I don’t remember any of this. Perhaps it was my age and my inability to process the situation, or I just didn’t care, but almost a year’s worth of hospital visits didn’t stick in my memory.
I remember my grandparents taking me to see them, making me scrub my hands before going to see my brothers. I remember a girl at school whose brother had been born at the same time. He went home straight away and he was fine. I had to stand and look at my brothers in a plastic box. If I wanted to touch them- I couldn’t hold them- I had to put my hand through the holes in the incubator with the severe supervision of my parents.
Whenever I went to the hospital, I hardly spent time with my brothers. There was no connection there. I was left to talk to the nurses, colour books quietly in the hallway, or read the next instalment of the Narnia Chronicles. No playing, no talking, no holding my own two brothers.
Once they were home, I was allowed to hold them but they had oxygen tanks, which meant I could only hold them a certain way and certainly no carrying. There were wires everywhere and tanks nearly the same size as me. Imagine hauling them with you wherever we went. We didn’t go anywhere. People took their kids and babies to the park, or family days out, or baby groups. We kept my brothers in moulded blue chairs to hold them still, while they stared at you over their oxygen wires, their tanks always behind them.
But somehow that never daunted me. I was an only child for years so I guess I thought this was a new normality of life. I hadn’t known any different. Then one day, the reality of what other people thought became obvious. You know how primary school goes. I had an argument with someone about something petty, as kids do, and as I turned to leave, he said something about my brothers being retarded. Safe to say, he was on the floor in the next few seconds.
But you can’t go through life reacting that way to the stares, and the comments, and the evident disgust.
You can’t be embarrassed when your brother smacks his head off the floor in the supermarket when he doesn’t understand what’s going on. Or when they can’t sit still at a meal in a restaurant. You’re not allowed to let people see that you’re tired and embarrassed. Of course, you become resilient to other people’s opinions and that you couldn’t care less. But that takes a few years.
While everyone else is going out with their brothers and sisters, playing games, going on holidays, and whatever else people seem to do, there is no bonding in the same way. I washed my brothers, clothed them, changed their nappies, fed them, put them to bed, and gave them medication. That was how we bonded.
There was no talking or understanding. I sat with them while they stared at the television, since they couldn’t move or communicate. Imagine growing up hearing people spend time with their families.
“My brother is coming back and we’re going to the cinema.”
“My brother is going to prom tonight.”
“I just went camping with my brother.”
Well, I just listened to the Moana soundtrack at home with mine for the umpteenth time. We will never have a normal sibling relationship and thirteen years later, I am beginning to grieve that loss. They most likely will not marry nor have children; I will never be an aunt. I have brothers but I won’t have that relationship- not a normal one.
And then we come back to the mental health aspect. My mother attributes it to my brother’s being born but there is so much more than that. I’m not the only person in our house who has had issues with their mental health. In fact, both of my parents have struggled, especially my dad. Men always struggle more with their mental health and he was the last to be asked for support. Between school, work, caring, my brothers, and my parent’s own issues, I would say it wasn’t as clear-cut as my brother’s being born.
It’s not as simple as our family being ‘strong’, or ‘inspirational’, or ‘amazing’. You get that so often but how can you do anything else other than get on with your life? What were we meant to do? Leave them? Neglect them? Give them to care? Those were not options and it is how it is. It’s not a matter of being strong.
I’ve mentioned my mental health before and I’m not for skirting around the issue. People should discuss it more. Perhaps then, it may become less taboo in everyday conversation. We all have issues. Get over it.
But again, I can always pinpoint the time that I got f***ed over. One night, on the same week that we had returned from our first holiday in America, in the chocolate aisle of Sainsbury’s. I tried to tell my mom and I ended up crying for two hours before going back downstairs to tell her. I spent the next week off.
It took all of my courage to tell my friends and I got nothing in return. How can you be depressed when you just came back from Disney World? So I only ended up discussing it with two of my friends. Years later, I get people telling me about their own mental health now they’re in university and I tend to ignore them. They want me to sympathise and for me to give them advice, but where were they when I needed them? Nowhere. Amazing. And the best one of all- “Why didn’t you talk to me?” Because my own friends made it quite clear they weren’t interested. Nobody wants to invite the downer to the party.
My teachers labelled me as lazy and ‘just not clever enough for A-Level’. It’s okay, they tell me, it happens to a lot of people. Even when I was definitely aware of my depression and anxiety, it was always the same. From a student with impeccable attendance and grades to someone who was hardly ever there and barely scraping a pass, nobody stopped to think there was something wrong. Even when they were told.
Then above all of that, SURPRISE, I found out I had Asperger’s. I got my diagnosis, offered the few support services they had, and told I would always have reactive depression and ongoing anxiety issues. But good luck at university and with life in general.
But I guess my brothers still have something to do with it. Every holiday is a ‘holiday of a lifetime’. Everything they do is ‘the chance of a lifetime’ because we will always be aware that they will not live an expected life span. Every time they are given a great opportunity, I watch their reactions and there is always that thought that they will die.
I don’t know if you’ve ever experienced that feeling. I don’t know if you’ve ever seen your brothers sleeping and checked if their chest is moving, or gone to see if they’re still breathing when they wake up later than usual. I’ve been lying next to my brothers and them not respond. Have you experienced the feeling that your younger brother is lying beside you and you don’t know if they’re alive? Because I have.
I am their favourite person, their best friend, their protector, their guide, and ultimately, I will be the one to bury them.
When a sibling is born, have you ever wondered when they will die? Have you ever had to pick a career with your siblings in mind, knowing you’ll have to provide for them? To know that if they are still alive when your parents pass on, that you will be that one person to care for them. You have the responsibility and no matter how much I am told I don’t, whose else is it? How could I leave them to fend for themselves if my parents were no longer here? My life isn’t just for me and it never has been since the day they were born. I will always make most of my life choices with them in mind.
And somewhere in the audience at Russell’s Hall, I heard someone start crying. It might be surprising or upsetting to some, but this is what I find so bizarre. My brothers were born to my parents and as my siblings, yet other people seem more traumatised by their disability than we are. We have to comfort friends and family who are more upset by this fact. But we’re the ones who live with them and who care for them. How this works is beyond me.
Where I am going with this post, I don’t know. I guess if you’ve never been in this position, then you should count yourself lucky. If you have, then know there is someone who, at least partially, understands. My life has been good and my parents have made sure I am somewhat cared for. So always be thankful for what you have because you never know when it could end.
I will never know how long my brothers will be alive. Tomorrow, next week, or in ten years time. So I hold their hand, I cuddle them before they go to bed, and I buy them the new Disney toy they want because it may not be the relationship we wanted, but at least we have one. I am a carer and I always will be. At least they are alive and here. That’s all you could ask for.