I remember the night my brother was born – I was two and a half and it was probably the first time I’d been away from my parents. I was put to bed at our neighbour’s house in a big double bed. I was wary of the size of the bed and the sheets felt very cold, but I was excited because I knew I was getting a new baby brother or sister.
My brother was born with spina bifida, leaving him paraplegic and also with learning difficulties. Both he and my mum were in hospital for a long while. We lived in America at the time, and my dad used to say that it was only because of advanced American medical know-how that they didn’t both die. Whether this is really true I don’t know, but I guess it may well be.
I remember being sat in an armchair and my dad saying to me that my new brother was very ill and that I would have to be grown up and responsible. Of course, as I was only two, that didn’t mean much to me at the time, but over the next few years, as my brother had various major operations and we went through traumatic medical crises, the full meaning of what it meant for me began to take shape.
I spent the rest of my childhood living a double life
At school I found I could pretend my life was normal and everything was fine; at home I often felt overwhelmed by my feelings of fear, loss, guilt and shame. My brother’s problems were very rarely spoken about openly, and I pictured them as a big black cloud floating just above my head. Whilst of course my parents were dealing with awful circumstances too, with very little support as far as I can tell, looking back there was never a time when anyone, anywhere, asked I how was doing or how the situation affected me. I was expected to get on with things and not to show any emotion or upset; I was expected to excel at school and not be any trouble. Whilst my school friends had the usual childhood coughs, measles, mumps, etc, I was never ill and I never took a day off school – as if my body knew there was no space for me to be ill whilst my brother was so unwell.
School was my refuge, somewhere nobody really knew much about my brother, as I never, ever mentioned it; and from a very young age, reading and music became my saviours and allowed me to forget my sadness for a while. On the rare occasions friends came to my house – I always preferred going to their houses whenever I could – I would try to avoid them seeing my brother’s wheelchair. I grew up being very used to being alone at home, and I still prefer my own company most of the time.
We get along, but we don't really have a brother-sister relationship
When we were young, my brother and I were close and had a great relationship. Once he got to be around five or six, and his disabilities became more apparent and less easy to physically manage, we drifted apart. Later he attended an excellent residential school, and then I left home for university. I saw him less often and I was able to push some of the fear and guilt to the back of my mind. Of course, because I never talked about my feelings that just made them more upsetting, and so I pushed them back even further.
Now, we get along, but we don’t really have a brother-sister relationship. I know I should try harder, but he is quite difficult to be with. He is grumpy or angry a lot of the time and has pronounced views about things, which don’t tally with my more open-minded view of life.
I was on holiday recently with my boyfriend’s young niece and nephew, and seeing them running around and playing outdoors with each other, in such a relaxed and easy way, made me feel so sad for both my brother and me, and the experiences and the relationship we’ve missed out on.
I was worried about the future
I was about four or five when I realised that at some point in the future, my mum and dad would get old, and the responsibility for my brother’s care would fall on me. That time has just about come, as my mum is in her seventies. I have had to force myself to start to take more charge of the situation, encouraging my parents to talk more openly about what we need to sort out over the next few years. A crisis earlier this year, when my mum was ill, led me to search online for support and that’s when I found Sibs.
Coming to the sibling support group for the first time was mind-blowing. For the first time ever, I was in a room with people who got it, who understood and shared all the awful experiences and negative emotions that I felt. Hearing other people’s stories – many of which were far more traumatic than mine – also helped me to start to rationalise and put my experience into context.
Walking back to the tube station after my first session, I actually felt a physical difference. My shoulders felt less tense and I finally felt like I’d found people with whom I ‘belonged’.
Are there positives about having a disabled sibling?
One of the questions that was asked at that first support group session was ‘what are the positives about having a disabled sibling’. Ha! I thought, there are absolutely no positives, it’s all been an overwhelmingly negative experience. But when I thought about it a bit more, I had to admit that it has probably made me a ‘better’ person in some ways. I am more empathetic, more open minded and accepting. I’m more aware that other people have hidden problems too, than I would have been otherwise.
Another topic we’ve talked about is ‘funny experiences with your sibling’, and I do have some of those; my brother has no ‘social filter’, and will just say or do exactly what he feels like. We were at a posh charity Christmas raffle a few years ago; when he realised none of his raffle tickets had won, he shouted out ‘b******s’ at the top of his voice, which I found hilarious (and am laughing now as I write this!).
He’s very impatient too. On one summer holiday outing my dad was parking the car on a slope overlooking the beach. Before Dad had a chance to put the handbrake on my excited brother had whipped off his seatbelt and flung open the door, at which point he tumbled head-first out of the sloping car, giving me a split-second to grab one of his ankles as he dangled over the edge.
My advice to young siblings would be: you’re not alone. There are people who will help and comfort you, if you can tell them that you feel sad, or lonely, or scared. Talk to your parents, your grandparents, your friends or your favourite teacher. It’s OK to have these feelings and you’re in a very difficult situation. It’s normal to be worried about it.
For older siblings, adult sibling support groups have been massively helpful for me. There are also books I’ve found online – both memoirs and medical/research textbooks – which have made me feel better about my worries and feelings, and have taught me more about the detail and impact of my brother’s conditions.
I’ve also recently started one-to-one therapy, specifically to talk about my childhood experiences, which is already starting to have a positive effect. Finally – don’t be too hard on yourself. Remember, after all you’ve been through with your sibling, you’ve still managed to make your own life and are still (mostly!) sane. That’s a massive achievement and you’ve overcome obstacles that most other people will never have to. You should give yourself credit for that.
All names have been changed.