In Every Moment We Are Still Alive Read online

  The Neonatal family room is opposite the lifts. Unlike the family room at CIC it’s spacious and generously furnished. A large mint-green settee by an oval table, a flat-screen TV, two rectangular dining tables, a bar counter, dishwasher, freezer, fridge, kitchen sink, several microwave ovens, and masses of toys. The bedroom’s next to the kitchen, a bed and locker are all that fits in there; it has a view of the inside courtyard, bushes, trees, and street lights surrounded by high brick walls. David is lying on the sofa, tapping on his laptop. How are things with Karin now? he asks. No change, I answer. Have her parents met Livia? Not yet. They haven’t seen Karin either, they’re obviously desperate to. I’ve told them they can visit tomorrow, but it makes me feel disloyal to Karin—she only wanted me to be with her. Okay, but don’t you think it’s heavy going for them not to be able to see her? She’s not a child, David. We’re a family, it would feel pretty weird if they spent their time sitting in there; that damn room she’s lying in has become like a part of our flat. But she’s still their daughter, he replies. She’s my Karin. Yeah, that’s true, he concedes. It has to be my decision and Karin’s, I say. I know this is important to her as well; she wanted it to be just me by her side. Tom, I know you, I can understand this is just unbelievably hard, the whole thing is nuts, but I think it would be good if you let them see her. It’s not as simple as that, David. What’s not so simple? You have a good relationship with them, don’t you? Yeah, we do, but David, I can’t talk about this any more now, I’m so tired. I think it’d be better if you let them see her, he says. I reckon Karin would have wanted that too. I sit down next to him. He takes off his headphones. Can you stay the night tonight? I ask. If you like, yeah, sure, I’ll just let Kristina know. Thanks, David. You remember I snore really badly though, yeah? It doesn’t matter, I answer. Tom, go and lie down. I have to work a bit longer, and if I can’t stay the night then at least I’ll stay until you’re asleep. You shouldn’t be on your own right now. David has turned onto his side, watching me. Shit, Tom, you’re so tired, your eyes are completely bloodshot. Last weekend Karin was painting her toenails and laughing at an episode of The Sarah Silverman Program, I tell him. This has gone so damn fast, I don’t get it. Yeah, it’s unbelievable. She was laughing, I stress. Does she like Silverman? She was laughing, I tell him again.

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  At quarter past twelve I wander down to CIC to say goodnight to Karin. The automated female voice in the lift says: Level zero two. And then: Level zero zero, entrance level. I hurry out as soon as the doors open. In F21 I ask the doctor who lets me in if I can’t just have the code to the door; it’s a nuisance always to have to ring the bell and explain why I’m here. I feel as if I’m disturbing them, I add. I’m not allowed to give the code to next of kin, he answers, but really, you’re not disturbing anyone. I get stopped again at the door to Karin’s room: We’re just changing the sheets, you can come in in a minute, says the nurse. Is everything okay? I ask. We’re just washing her, she answers. John said I could be with her as long as she’s not in surgery, I say. We won’t be a moment, you can come in shortly, she says and closes the door. I stand for a while in the vestibule before returning to the corridor, but then I turn around and hurry back. I knock, open the door, and step inside. Look, sorry, I completely get that you have your work to get on with and your procedures, but I was shut out at Söder Hospital and it’s not goddamn happening again. I go on: I sat with Karin during her caesarean, and believe me, it wouldn’t be the first time I’ve seen her taking a shit. I sit on the stool at her bedside and adjust the lamp so that the photo of Livia ends up in front of her. The nurses study me but after a moment get back to their work. They lift one leg at a time, discard a sticky underlay, and wash her with wet wipes. I stroke Karin’s fringe as gently as I can.

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  The family room. Lillemor stands in the doorway to the sleeping alcove. She’s wearing a faded nightie and says she’s taken a sleeping tablet. She’s made her bed in one of the bunks and put Norén’s Diary of a Dramatist on the pillow. How are you, Lillemor? I tried to read, it didn’t work, she answers. I can imagine, I say. Sven and Måns are on Lidingö island, she says. Right, okay, well it’s so great that Måns came, it was really good to see him. There’s a room called Livia’s Room on Gotland, she says, the gallery in Körsbärsgården, maybe that’s where Karin got the name from? I don’t know, she never actually mentioned the name before. She likes that gallery. Yes, she does. Oscar’s wife is called Livia, you know, the actress. Yeah, no, actually I didn’t know, Lillemor. It’s a lovely name, Livia, Livia Lagerlöf. Yes, that feels right. Lillemor clutches a little grey ball made of suede, no bigger than an egg, it looks like a pincushion. I look down at it. Are you sewing? I ask, trying to smile at her. She glances down at it—Oh, no, apparently it’s called an anti-stress ball. Right, okay. It’s silly, perhaps, but I’ve started holding it when I’m walking about, it’s nice to squeeze it. It feels a bit like Karin’s hand when she was small and I would walk her to school. What primary did she go to? I actually don’t know. Bo School, she replies. Oh that’s right, okay. Lillemor hides behind the door and says: Goodnight, Tom, call me if you want to, I’ll leave my phone on. Same to you, Lillemor, goodnight, I answer, and wait until I hear her lock the door.

  I’ve learnt to like the plastic floor in the corridors at Karolinska, smooth and white as if covered in condensation, like artificial ice. As a child I wanted the whole of Huddinge to be covered in ice. I was fascinated by the Ice Age, I fantasised about a new Ice Age so I could skate everywhere. On my skates I was strong and even quicker than the birds. I’ll avoid lifts from now on. I want to be able to glide away whenever the urge arises. In the lifts I’m locked in with mirrors or people I’ve never met who somehow remind me of Karin. Only fleetingly, never more than an arm movement or a tone of voice, but there she is, just as always, next to me in the lift, only she doesn’t know me, she has no idea who I am.

  Livia’s incubator is no longer in Room 15. I stop one of the Neonatal nurses I recognise from yesterday. Livia’s not here, where is she, what’s happened? She answers me in a whisper: She’s fine. So where is she then? I burst out. We moved her out of Neo-Iva because she no longer needs breathing assistance, she answers. Okay, but you might have called and let me know, I was only in the room over there. Well in that case we’re sorry, I suppose we just thought there was no need. We only moved your daughter a little further down the corridor, we did it early this morning. She’s in Monitoring Room 9 now. Where’s that? I ask. Just follow the corridor straight ahead to Neonatal, past the entrance, and then it’s the room directly on your right. Okay, thanks, I reply, and break into a run.

  On the floor inside the door of the Neonatal section big letters proclaim: Stop! And then, in smaller letters: Wash your hands. Hanging from the ceiling is a large sign written in both Swedish and English: Please wash your hands. The assistant nurse, who comes to meet me, walks very slowly and talks in a low voice, her forehead flaming red with acne. All the staff in the section move quietly, a reassuring calmness about them. Livia’s incubator is by the window. There are another two incubators in this part of the room, and four incubators in the adjoining room. In real terms it’s one big room divided by an open area and a small reception. A piece of fabric has been draped over Livia’s incubator. I was going to feed her in a minute, maybe you’d like to do it. Thanks, but I have to go down to CIC. That’s where Livia’s mother is, I say, lifting the fabric. How’s Livia’s mother doing? she asks. I don’t know, I mean, things aren’t good, I answer. Livia lies there with her arms and legs stretched out; she has a small yellow dummy in her mouth, and is wearing a pink Babygro, and a white hat with sort of teddy bear ears on it. While keeping her eyes on Livia, the nurse says: The doctor is coming by to have a look at her today or tomorrow. Where did you get the clothes from? I ask. We have them here, she says. Livia’s mother is a bit allergic to pink, I point out. I just grabbed what was there
, you can change them if you like? I wouldn’t mind a different hat…If you’ve brought your own clothes you’re obviously welcome to use them, she says. Forget it, I only just woke up, I’m talking off the top of my head, it’s fine like it is, thanks. She leans her chin over the incubator and inhales through her nostrils. There’s a bit of a smell, I think, maybe you’d like to change her? she asks. I don’t know, I answer. She lifts Livia’s legs and instructs me. I’m so tired that I just do exactly what she tells me. She looks down into the nappy and explains: That’s called meconium, poppy juice they used to say in the olden days, it’s what’s formed in the child’s intestines while it’s still in the womb. Uh-huh, okay. Was that the first time you changed her? she asks. I don’t want to keep the nappy. She looks back at me, confused, almost scared, then turns and discards the nappy in a refuse bin by the door.

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  Persson is just coming out of Room 1, he almost bumps into me: Hello, how are things with you and your daughter? We’re fine, how’s the night been here? The lactate is still rising, which we don’t want, so we’re working on bringing it down. Okay, I say. It’s almost certainly a result of the leukaemia, we’re X-raying her today so we can rule out anything else. I get out my writing pad and say: Karin’s father is basically a doctor, what should I tell him? I’m not sure I follow, he says, just tell him what I told you, he’s welcome to talk directly to me if he prefers. It’s Karin’s wish that I talk to you direct, I say, but I figured if I tell you my father-in-law is a doctor I might get straighter answers out of you. We’re not withholding anything, Tom. No, I’m not accusing you of that, but you’re very careful about how you present things, you say the glass is half-full, not half-empty. He considers this thoughtfully then looks away down the corridor. I go on: Only a glass that’s being refilled can be half-full, if the liquid is about to disappear then it’s half-empty, and…oh forget it, look, I want you to talk to me using the proper terms. I don’t want you to interpret those terms for me, talk to me as if I was a doctor, that’s all I’m asking. I think I understand what you’re saying, but we can’t and we mustn’t guess, he says. Which is exactly what I mean, so what can I tell Karin’s father? He looks down at the floor and answers: Karin has an extreme and sustained lactic acidosis and a very high lactate, as we’ve told you. I can understand it’s a lot for you to take in and I’m more than happy to run through it again with you. My view is that her illness has been a complication of acute leukaemia, but it could very well be combined with acute infection. We’re starting the cytostatic treatment today, but Tom, your wife is gravely ill, both in the short and the longer term, and all we can do now is help Karin pull through. In passing he also mentions something that sounds like ARDS or it may have been an English pronunciation, as in RDS.

  The nurse dabs Karin’s lips with a sponge. She scrutinises Karin’s face. There, dear, I won’t bother you any more, she says, then catches sight of me: Hi, come in, I should tell you right away that Karin is bleeding from her vagina after the C-section, they’ve been here from Gynae to have a look, just so you know. Okay, I answer. You may notice bleeding, I mean, just so you don’t worry. Okay, now I know, thanks. I sit on the stool. She looks at the photo of Livia: I have to say, your daughter is so lovely. Yeah, thanks, I say. Livia, that’s a nice name. Yes, it is, thanks, I say. She smiles, I smile back. She puts her hand on Karin’s arm. Karin, you have such a lovely daughter, and a fine man who’s here with you all the time, she says. Karin’s weight must have gone up by forty kilos since I saw her yesterday. I learn that this is because of the copious amounts of blood plasma, sodium bicarbonate, and glucose that the doctors are trying to get into her circulation, although most of it accumulates under her skin. With the thin sheet over her she looks like a gigantic jellyfish. She has a support cushion under her right arm, and a saturation sensor on her ring finger. Sorry, but does she have to have that gadget on her ring finger? I ask. The nurse looks a bit puzzled, asks what I mean. It’s almost a bit symbolic, I tell her. Oh, you mean like a wedding ring? Yes. They’re usually worn on the left hand, she says. Oh sod it, it doesn’t matter, forget what I said. Karin’s belongings are kept locked up in a cupboard, if that’s what you meant? Okay, thanks, but she doesn’t even have a wedding ring, I say. She smiles at me again. The specialist is sitting by a computer, writing, a dictionary open next to the keyboard. I turn the pages of my writing pad. My notes are careless, sometimes small, squiggly, hardly even legible, sometimes firm and angular. Anders, sorry, I say to him. The specialist turns to me. He seems awkward about my knowing his first name, and then, more as a statement than a question, I blurt out: RDS. He stands up, puts his hands in his pockets, and comes towards me. We generally just have to hope it sorts itself out, he says. ‘Just have to hope’? He continues hesitantly: It can only heal itself spontaneously. You should probably talk to John about this, what has he told you? More or less what you just said, I answer. Okay then, if there’s anything else just ask, he says before sitting back down and resuming his writing. Anders, again, I’m sorry, I need to hear this over and over, how serious is RDS? He leans his elbows on the table, turns his head towards the window, and answers: It’s certainly serious. Most people who develop the condition are already gravely ill with something else, I mean, it’s an inflammation of the lung with emission of fluids and deflation of the alveoli; the inflammation causes damage to the body, oedema, fluid in the lungs. He looks round at me, then goes on: It’s especially serious bearing in mind that it’s caused by leukaemia. I make a note and say: What’s the disease actually called? It’s called Acute Respiratory Distress Syndrome, ARDS, people used to call it lung shock. I get a feeling the cytostatic treatment is going to be important now, I say. Yes, we want the cytostatic treatment to turn everything around, we’re starting it today. It won’t cure her ARDS, but hopefully it’ll help your wife to recover enough strength to start self-healing.

  On the way back to Neonatal I stop off at the family room. Sven and Måns are sitting in the sofa, talking. Lillemor is sitting at the kitchen table, leafing through the evening paper. I sink into one of the armchairs and say: I just wanted to update you a bit. Okay, thanks, answers Sven, his hernia brace creaking slightly over his stomach. I more or less start reading out the notes from my writing pad, and try to explain as best as I can. Lillemor stares at the floor, and Sven corrects me a couple of times on my pronunciation of certain medical terms. Måns directs his questions to Sven. He has the same high brow as Karin, but a larger head, the hard cranium of a bull. They check everything on their smartphones and tablets as I talk. I hope you understand me, why I’ve been uncommunicative, I say. We understand, answers Sven. Karin could hardly have expected this, says Måns. Who knows, maybe she did, I say, either way I was going to suggest that you visit her today, I’ve told them you’re coming, and Måns responds: So let me get this straight, you’re saying we can only visit Karin today, just a short one, then that’s it? Please, Måns, sorry if I use Lena as an example, but if she was lying in there and had told you before she was put to sleep, only you can come in Måns and no one else, then surely you’d be saying the same thing to Lena’s parents? We understand, said Sven. A moment later, Måns calls out after me in the corridor. He embraces me. I don’t want us to be on bad terms, he says. I don’t feel we’re on bad terms, I answer. He hugs me again and says: Tom, if you need anything, anything at all, we’re here. Thanks, Måns. I’ll take Mum back to Lidingö tonight, she’s ready to pass out, you know how she gets, she blames herself for all sorts of things. Yeah, okay, good, do it. I’m just so tired, Måns. Yeah, I understand it’s chaotic. Thanks for letting us visit Karin, Mum really needed to. He embraces me again: And when it’s a good time for you, Mum and Dad really want to meet Livia, it would be good for them to have something positive to focus on.

  The midwife from this morning catches sight of me by the entrance to Neonatal. She waves a key and says: We’ve got you a room. She seems incredibly nervous so I ask her if some
thing’s happened. No, but, I mean the room is really for mothers recovering after giving birth. She leads me to a lavender-blue door with a round window of frosted glass, and a sign: Family Room 1. I look inside, and notice a bare burnt-ochre wall right outside the window. How long can I stay here? I ask. Until further notice, a week or two, until your daughter can go home. Okay, even if Livia’s mother is still here? I can’t answer that, she says. Okay, thanks. But if someone from Maternity comes along and needs the room we’ll have to find you something else, she says. I go inside and look around. My own shower, toilet, a patient bed with valves overhead for oxygen and air, a fold-out bed against the wall, a refrigerator for formula and breast milk, a noticeboard, a changing table. She hands over the key and leads me to the monitoring room. Someone has stuck a laminated sheet to Livia’s incubator. It says: Livia Lagerlöf. Mother: Karin. Father: Tom. The midwife pushes over an armchair with a footrest. I take off my T-shirt and sit down. Have you done this before? she asks. I’ve got the fact that it has to be sterile, I’m with you that far, but I’ve never fed her with a tube, I say. She picks up Livia, who’s only wearing a nappy, and puts a blanket around us. She fills a syringe with milk replacement and connects it to the tube going into Livia’s nose, and says: Press in one black mark’s worth per minute; if you do it too quickly she’ll only vomit, but if you do it too slow she’ll scream, and make sure there aren’t any air bubbles in the syringe, or she’ll have gas in her tummy. Okay, I think I’ve got it. My weight has come tumbling down, I was skinny before all this, my ribs stick out, I’m horribly pale, full of veins and blackheads, the sun hasn’t touched me in over a year. Livia sniffs at me. Mine can’t be a very nice breast to lie against, I whisper to her, but it’s all I’ve got. She puts her ear against me and sleeps for almost an hour before the midwife comes back and asks how it’s going. Quite well, I think, but she’s still sleeping. She looks at the milk-filled syringe and says: You can keep feeding her even while she’s asleep. Oh, okay. She squeezes the syringe and adds: The milk’s gone cold, I think we’ll have to do this again. Back in Family Room 1, I pull down the folding bed and lie down on it. I look at the perfectly made patient bed on the other side of the room. I go to the window; obliquely to the right I can see the grey sky between pitch-black metal rooftops, and to the left a gravel terrace jutting out, a work of art on it, large, colourful glass eggs piled up on a pool-like mirror. I can hear the TV from Family Room 2.