We are turning the spotlight on family members of people with spinal cord injury (SCI) and how Back Up supports them. Peter has written about his experiences of having a brother with SCI and hopes that any other siblings reading this may find some comfort, or at least fellow feeling in the words.
I was 15 years old when my brother broke his neck. His life, my life, our family’s life completely turned on its head in a matter of seconds.
Before my brother’s accident, in terms of our relationship, we were just as you’d expect two teenagers to be: constantly ribbing each other, occasionally combining verbal barbs with whacks around the head. We used to play a game where you’d try to spot certain types of car and whoever was first to notice one got to punch the other. Our headmistress used to own one such car and just as we rounded the corner every day John would always leap into the air to see over the school wall and come crashing down, fist bunched and grinning. But, in spite of the sometimes quite literal bruises, we still walked to school together, laughing and joking.
We were close, our whole family was close. And we were happy. Our holidays were mostly spent travelling or huddled around the dining room table playing cards, board games or discussing the news of the day. Lives aren’t perfect, but ours was pretty golden – the biggest worries were exams and desperately trying to remember if anyone had played the Ace of Hearts.
All of that changed one December when, driving south to see family, we hit a patch of black ice and were pitched from the road. Three of us walked from the car, one was carried out and has not walked again. I find it hard to describe even now the horror of those first few days. Never in my life have I felt more desperate to help someone and yet at the same time so powerless. One moment remains etched on my mind: we were in the ICU (I don’t remember what time of day, it was always dark in there).
At this point John still wasn’t able to breathe on his own, a filthy great tube shoved down his throat served to keep his lungs inflating. Obviously he couldn’t speak, but on this occasion he was trying to. He was mouthing something, but it was hard to make out because of the tube. He was growing increasingly desperate and he started to cry, tears leaking soundlessly down his face.
At that moment I wanted to break and remembering it I still want to weep. He was trying to mouth “water”.
Because of that feeling of powerlessness I suppose my first reaction outside of the hospital was to make sure that everyone else was okay. I hid my tears from my parents as much as I could (I felt they had enough to be going on with) and I tried as much as I could to help out. The brave face was exhausting but at the time, in quite a warped way, I got myself into the mind-set of thinking this was helping – by consciously hiding the feelings I could ignore them and, if I ignored them, I didn’t have to feel their pain and maybe they would go away.
Trust me when I tell you that this didn’t and doesn’t work. All it did was mean that I didn’t let out my feelings in a controlled way: I’d break down, rather than talk things through, and often I’d do it alone. Crying alone is not a pleasant experience, you want somebody to hold you, but my pretense that I was okay meant someone wasn’t always there.
I’ll be honest, the first months after the accident were pretty miserable for me. I was afraid that doing the things I used to enjoy, my rugby, my drama for two equally twisted reasons: first that doing things John used to enjoy would somehow make him feel “more disabled” and second that enjoying myself was somehow a betrayal of everything that John was having to experience – if he was in pain, I had to be in pain too.
In 7 years since my brother’s injury and in 3 years as a sibling mentor I’ve worked with many siblings and this is the feeling that I’ve most often encountered and the one that I’m most desperate to dispel. Because I made myself miserable and so, in turn, made myself much worse company. In an absolutely awful way this also put me into a horrid cycle of resentment and guilt – I felt I couldn’t do things because of my brother’s injury, so I didn’t, which made things even harder than they already were, which made me blame the injury which made me feel awful because I couldn’t believe that I could feel like that.
This cycle continued for about a month and then I frankly decided I just needed to blow off some steam and so I went back to my rugby training. Afterwards, at the hospital, scared of how he’d react, I told John. I can’t remember the literal words he said to me, but as far as I can remember they ran something like this: “Peter, I wake up every day with the reality of being disabled. You playing rugby doesn’t remind me of that, I live it every day. I don’t want your life to stop, heaven knows I don’t want you to be my carer. You’re my brother and that’s who I want you to be. Everything else in my life feels like it’s in flux and I need to know that some things will still say the same. Also, you’re much better company when you aren’t miserable.”
I’m not saying that him saying this suddenly changed everything, I still felt guilty for a while, but it made sure I kept on doing things and doing things that were meaningful for me made sure I stayed sane.
Another thing I found difficult, and honestly sometimes I still do find difficult, was the feeling of being invisible and “second priority”. My parents were constantly in and out of the spinal unit, my dad worked, I came home to an empty house every day. When people returned we were all tired, dinner conversations felt somehow more muted. I wasn’t completely ignored, my parents tried their hardest and I love them for that, but priorities were set and John needed them more at that point. It’s a strange one in terms of how this made me feel – my head knew that this was necessary but the heart feels abandonment regardless of how the head rationalises things.
I missed my parents, this thing had taken them away and, rightly or wrongly, I felt I’d been left behind, expected to cope alone. I found this expectation especially difficult with other people. It felt like nobody asked how I was, how I was doing, I was a prism through which my brother could be seen. Sometimes that’s still how it feels; particular old ladies in the church, as soon as they see me, will ask me “How’s your brother” as a substitute for a “Hello”. This is because they care and I know I shouldn’t be irritated by it, but sometimes I am. I think this is something siblings struggle with a lot – feeling something, feeling bad for feeling it and then burying it for later.
I found it incredibly hard to find a place where I could talk openly about these feelings. I think, as a solitary sibling, isolation becomes very easy as you have no easy outlet for support. My parents shared a bed and could confide in each other and be vulnerable every night; my room was empty. Then, you might ask, why didn’t I confide in my friends, the people around me, teachers, my church minister? The answer is, honestly, because I felt ashamed of how I felt.
Even as I have been writing these words I have felt terrified – as I imagine so many other family members do when they open themselves up like this. I feel scared because I still carry the buried fear that I’m not allowed to have struggled. The words that echoed in my head throughout the years following that car crash rise up again and the venom in them hasn’t changed: “This didn’t happen to you!” “How can you possibly say YOU found this hard?” “How can you be so selfish?” This guilt wracked me and made it so hard for me to engage with people who genuinely wanted to help and support me.
It actually took being asked to get involved with Back Up’s family mentoring service and going on a training weekend with other family members to really open up – surrounded by impartial but understanding people who had all known what I had been through I finally felt safe; safe to not be okay. I’d urge any family member who feels alone like this to try this service out – talking to someone who you feel is genuinely hearing what you say, can understand and has felt this way before; there’s a freedom in that beyond words.
I knew very little about “spinal cord injury” before that December. I knew the basic amount I imagine most people do about “broken necks” and “broken backs” but my knowledge was 100% colloquial. I found out more along the way, the consultant explaining how the spinal cord was effectively a bunch of wires and some could be affected whilst others weren’t. I also engaged in the dangerous activity of searching the injury online – where I learned some useful information and a lot of unhelpful information.
It’s a daily reality though and you learn new things every day and trust me when I tell you, you do learn. As a family you learn to buy trousers which are easy to get off in a pinch, you learn to treat carers as people and laugh and joke with them. This stuff comes with time but time does teach you lessons.
In terms of how our life is now, with 7 years of separation, honestly our lives are very, very full – we’ve not just survived, but thrived.
I’m not saying the pain has gone away: I can still look at images of John kicking footballs on the beach or sitting at the top of rocks and feel the twinge of sadness. It can still drive me nuts when John and I pass someone in the street and they only speak to him without even looking at me. Heartbreak of this sort heals but isn’t forgotten, I’m sure reading through the earlier part of this post you will have seen that memories can still feel very fresh to me.
Sometimes I look at John and I can see the pain still behind his eyes. But those are instances, not consistent reality. We’ve learned to cope and things have got better. We’ve travelled the world, been to Australia, New Zealand, America, Europe. We still sit round the table to play games and we most definitely still argue about current affairs.
The other day we were in the car and suddenly I felt a blow to the side of my head. I turned and saw John grinning – he’d just swung his left arm from the shoulder (he has no triceps) to hit me. He pointed out the window and I saw our old headmistress’s car. That’s the thing I hold on to most: not everything changes. At the dinner table, all sitting down, John is still John, he is the same person. Yes, there is a pain there that there wasn’t before, but he’s still the same person: the viciously intelligent, dry-witted guy he was before. And he’s still got a mean left hook.
Do you have a sibling with spinal cord injury? We want to hear your story! Get in touch with email@example.com for more information.