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.
The story begins at Paddington Station in 1999. From there, I ring home to see if my son Eddie is in. He’s nearly 19. Sometimes he’s there and sometimes he stays with his girlfriend. If he’s not there, I might go and visit someone else. If he is there, I’ll go home and we can have a chat.
It turns out that he is at home. But 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. Sure enough, I’m 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. I tell him that I’ve worked a thing into my show for children where I tell them a story about when he was a funny, naughty toddler, then, I say, I follow it with a story about how he grew and grew and grew until, as he is now, he became bigger than me. And something else: now he can pick me up and whirl me round and round until I shout, “Put me down, Eddie! Put me down, Eddie!” It works. To little children, as I mime the contrast between chasing after the naughty little toddler Eddie and being swung through the air by the giant Eddie, it seems miraculous that one day they could be bigger than me. I think it’s a miracle too. Eddie seems to enjoy the story.
He doesn’t go to bed. We sit in the living room. He’s written a play and we talk about how we could get some people together to do a kind of acted-out reading. He stretches out on the sofa – he really is bigger than me – 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.
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’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.”
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. People fill the house, turning up with food and cards. We try to comfort each other. They sit and talk.
How do you get better from something as total and as devastating as this? If I can magnify the pain once more, I’ll say this: Eddie had become one of those people in a family who is a pivot. There are different parts to a “blended” family or “network” family (siblings with different mothers or fathers), so one sibling might not link up with another part very closely. There may be ways in which one sibling chafes against another. Eddie had stood at some centre point where all the siblings pivoted around him. He was the one person equally beloved of all of them. He could sit on the sofa between two who were angry with each other and they would each be happy to snuggle up with him and joke with him. I had thought it was magical. I didn’t know how he did it. I cherished it more than anything else in the world. And now there was a hole. There was a gap on the sofa. How would I cope with it?
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.
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. Any other way feels to me senseless. I don’t believe in a fate or destiny that governs us. I don’t believe that it’s the will of a being outside life on Earth. I don’t even think any kind of “will” comes into it. It’s biology.
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.
More personally, Eddie’s mother and I decided to go to Paris. I’m not sure how or why that idea evolved. Perhaps it was the kind offer of one of my oldest friends, François, who I first met when I was a teenager. It seemed to make sense to talk to each other away from other people, in a place that was full of sights and smells that we both liked. There was no way that we were going to start up a relationship again. It wasn’t like that. For me, it was to do with trust and solidarity in the face of the fact that we both adored Eddie and were now utterly bereft.
François had just taken on a flat in Montparnasse, it was empty, newly painted and polished. All it had was a table, chairs and a couple of beds. It was hollow and echoey. The lights from the street decorated the walls.
In the daytime, we walked about randomly looking at street markets, buildings, the river. We weren’t revisiting a place we had shared. If anything, it was new. I have no idea why all this felt soothing to me but it did. One time, we walked past the entrance to the Montparnasse cemetery. Neither of us knew at that moment what kind of cemetery it was but on a whim, we decided to walk in. In fact, it’s one of Paris’s two huge secular cemeteries, full of monuments to some of France’s most famous people – or indeed, people from other countries who’ve died in France. Walking about among them was a strange relief. I think it made me think of Eddie as gone and now in some way in the company of the dead. I don’t believe in the afterlife, so what I mean is that just as there were monuments and stones there, with people visiting them, so I was already beginning to make monuments and inscriptions in my head. Not real ones. Not even blueprints for one that we might make. The imagined place in my head, the place that was Eddie, was like one of the tombstones in the cemetery.
Because we had no guide or plan, we randomly and pleasingly “met” the historic figures there, people we knew from our studies or interests: the poet Charles Baudelaire; the feminist writer Simone de Beauvoir; the singer Serge Gainsbourg, whose stone was littered with cigarettes in a kind of tribute; Guy de Maupassant, whose stories I had read in my French class; the surrealist couple Juliet and Man Ray, whose inscription was: “Unconcerned but not indifferent”. What did that mean?; and hundreds more. This may sound strange, but it felt friendly. The word “companionable” came to mind. I felt like I was in good “company”.
At one point, by a high wall, we came across a woman crying. There were flowers and photos on the grave. We stood with her. She spoke to me. She said that the grave was for her son but I noticed that she could hardly speak through her crying. I said that we had just lost our son too. I told her it was an illness. She said that her son died in an accident. When? I asked her. Ten years before, she said. A wave of feeling came over me. The moment she said that, I felt a mix of sorrow and fright. It was desperately sad that this woman was so consumed by grief, but it frightened me that she was this sad so long after the event. I then thought something that may seem heartless. I said to myself – I most certainly didn’t say it out loud – “I don’t want to be like her in 10 years’ time.”
To tell the truth, I was afraid that I would be. I felt like her in that very moment, my mind full of Eddie, thinking every minute about not having him there, and knowing that I would never have him there again. I felt like this woman sounded. But would I feel like that in a year’s time? Ten years’ time? I hoped not. I wished the poor woman well and walked on.
Getting Better by Michael Rosen (Ebury, £16.99). To support The Guardian and Observer, order your copy at guardianbookshop.com. Delivery charges may apply.
