“When you can put your kid to bed at night and they are dead in the morning, it’s like fiction. It’s so terrible.” - Michael Rosen
Author and poet, Michael Rosen, faced every parent’s worst nightmare when he lost his son, Eddie, to meningitis when he was only 18 years old in 1999.
Since Eddie’s tragic passing, Michael has been an incredible supporter of Meningitis Research Foundation, lending his support to vital fundraising and awareness raising initiatives, to help create a world free from meningitis and septicaemia.
Michael shares his story*
I’ll start by telling you a story. I’m telling it to you so you know what happened. I’m also telling it to you because it helps me to tell it. And because it helps me, I am saying that if anything like this has happened to you, it may well help you to do the same: to tell your story. You can do this in any way you like. The important thing is to tell it.
Meningitis is perhaps the disease parents fear the most – with good reason. It strikes without warning, as I learned with my son Eddie.
Eddie Rosen
Eddie is nearly 19. He’s not feeling too good, he says. A bit of a headache. I tell him to take some paracetamol and I’ll be home in about an hour.
He doesn’t seem too bad. Must be one of those things my mother used to call “a chill”, I think. We sit in the living room. He stretches out on the sofa and says that he feels a bit weird. I feel his head. It’s hot. I remind him that he can alternate between paracetamol and ibuprofen and line up the boxes for him, warning him not to overdo the dose.
He says he’s going to bed now, but he’ll have some ice-cream first. I ask him if his neck is stiff. It’s something I’ve done with the children for the previous few years since meningitis has come up on the radar. No, he says, he doesn’t have a stiff neck.
The last words I heard him say
Someone’s sent me a book of riddles that’s just come out. I’ve got it because a riddle I’ve written is in the book. I read it to him. He gets it. It’s daft. The answer, he says, is “your bum”. Those are the last words that I ever heard him say.
When I go to bed, I put my head round the door. He’s lying on his back in bed. “You OK?” I ask. He nods without making a sound. I check that he’s got the paracetamol, ibuprofen and a glass of water by his bed and then I go to my room and turn in.
In the night, I hear him get up and go to the loo. I have a feeling of irritation that I’m awake. I’ve got to get up early and I don’t want to feel tired. I fall back asleep.
I’ve got to get on the road pretty early so I’m up at six. I pop my head round the door to check how he’s been in the night. “I’ve got to go, Edz,” I say. “I know it’s early.” I remind him to double-lock the door on his way out. He doesn’t answer. I feel his head. It’s cold. He’s still. Unnervingly still. I nudge him. He feels like a rock. There’s no movement, no life. I know – but don’t know – that he’s dead. I shake him, shouting out to him, “Eddie! Eddie!” There’s no reply. I rush to get the phone, ring 999, ask for “Ambulance”. I describe what’s happened.
“Pull him out of the bed,” the voice says, “pull him on to the floor, lie him on his side.”
I grab hold of him, and do what I’m told. It’s hard. He weighs more than me. As I pull him, I see that his arm is stiff, at an angle, as if it’s in a plaster without any plaster on it. His armpit has strange red stripes. I get him on to the floor, and when I lie him on his side, a bit of pale red fluid comes out of his mouth on to the carpet.
I get back on the phone, I tell them what I’ve done and what I’ve seen.
The voice says, “We’ll be there in a few minutes.”
I start to feel deeply, hopelessly, helplessly guilty
I’m alone with Eddie in the room. I think he’s dead. I know he’s dead. I think that the ambulance people will come and they’ll do something that will make him come alive.
I don’t remember the next few minutes. I remember at one point thinking or saying, “Why have you done this, Eddie?” as if he had done this thing to me. I’m almost ashamed to admit it, though. Why or how could I have thought at that moment that I was in any way involved in him getting whatever it was that had killed him? I guess it’s part of how we see the death of those we love: we see them withdrawing their love from us. If ever, in our past, people withdrew their love from us as some kind of punishment, then someone dying can feel like that too.
The ambulance people call, I let them in, they dash upstairs, their bulky uniforms filling the space. They kneel over Eddie, and in a few seconds, one of them says, “He’s dead.”
I start to feel deeply, hopelessly, helplessly guilty. I have failed utterly and completely. It’s my fault that he’s died. By not saving him, I have killed him.
It emerges that what’s killed him is meningitis, or to be more precise, meningococcal septicaemia. I think of the posters I’ve seen at the GP surgery. Headache, fever, stiff neck, sickness, rash – do the test to see if the rash stays even when you press it with a glass. He had no rash, I say to myself. I didn’t see a rash. He didn’t see a rash.
How do you get better from something as total and as devastating as this?
What follows is not a menu. It’s not a prescription. I know better than many that being told how to mourn is one of the most irritating things in the world. We each have to find our own ways of doing it. We can watch what others do, listen to what people say, but in the end we have to make it work for whoever we are and whatever life situation we’re in. And there’s another thing: by making it your own, you have the sense that it’s you doing it, you’re the “agent”. You can take pride in your own ability to do something in the face of the impossible. Just following someone else’s plan won’t do that for you.
So I offer you what I did as a set of things to think about, ignore, adapt, change, or do what you want with. I hope they give you ideas for what you might want to do if you’re faced with loss or grief. Just that.
Finding out about meningitis
I spent a long time finding out about meningitis. I was desperate that this “thing” shouldn’t sit in my mind like a mysterious phantom that had appeared in the night and sucked the lifeblood out of my son. I wanted to know all that doctors know.
How did that help? It put what had happened into the context of the human race. It showed that Eddie’s death wasn’t just or only something that had happened to me, to his family, to his friends. It was something that happened to the human race and was part of the human story. We live with bacteria. Bacteria live with us. This is how it’s been for millions of years. We evolve with each other. The death of Eddie was a moment when the bacterium was so successful it failed: it killed its host and then died with it. To know these things helped me, and still does. It’s the only way I can make sense of it.
Connecting with others and realising I wasn’t alone
I also wanted to know about other people who had died of meningitis. That’s because I didn’t want to feel alone with this thing. And I wanted to know how people were coping with losing someone in this way. Who? Where? When? How? The internet had just got going. In fact, the computer I had was entirely down to Eddie. He had helped me choose it, set it up and had played games on it. Now I searched and made contact with others who had lost loved ones with meningitis.
I particularly wanted to know of nearly-19-year-olds. I wanted to know that I wasn’t unique in having missed that it was meningococcal septicaemia. I felt lonelier than I had ever felt before when I thought of myself going into his room and finding him dead or if I thought of myself as the only person in the world who had done that. That’s a nearly unbearable thing to feel. I found out, of course, that I wasn’t alone in that experience either.
25 years on
I think about Eddie most days. He comes to me in my dreams quite often and waking up from them is not good. I avoid looking at photos of him – that almost feels too real. He’s there, he’s in me, he’s around me. I talk about him. I repeat some of his jokes and favourite sayings. I retell the tricks he played on me. What am I, then? At ease with him? Is he ‘at rest’ in me and with me? Yes, I think it’s something like that.
Coping
I can't pretend there is any final comfort a parent can take from losing a child. It's overwhelming and devastating. I have a sense of loss and regret every day. The question is though, what can we do, what do we do, to cope?
In several different ways, I've found that I can cope. Sometimes it's through remembering Eddie with people who knew him. Other times it's talking about him to people who didn't know him, like younger brothers and sisters who weren't born when he died. I also write and write and write. I find that a great comfort. It helps me sort out what happened and why. When I say 'why' that means studying meningitis. In one sense, meningitis is something very, very ordinary. It's a bacterium. We're surrounded with bacteria all the time. It's part of life. This has taught me that Eddie was someone who, for whatever reasons, was unable to resist that particular bacterium at that particular moment. Without a vaccine, he just couldn't. You may find it surprising but I find that knowing this, is in its own way reassuring. And the other way I find comfort is through 'doing'. I'm busy. I become preoccupied with a whole host of different stuff: work, fun, sport, exercise and of course writing!
This all adds up to 'coping'. It's possible. I can think of Eddie without feeling as devastated as I did when he died.
*Abridged from Michael Rosen’s book, Getting Better: Life lessons on going under, getting over it, and getting through it. Published by Ebury Press 2023.