dinsdag 12 juni 2012

Tenacity

Afternoon

At 4:45PM I find myself sitting at Lara's bedside, holding her cool fingers in my hand. There is no response in any way. She looks terminal - no two ways about it - and even more so then this morning. Her hands are slighly swollen (she took off her wedding ring in time) which indicates lower kidney activity. Her body feels cool and lifeless, the muscles in her face are fully relaxed, her head tilted to the left with her cheek buried in the large green pillow. She now carries quite an amount of sedatives in her body, while more is being pumped into her on a continual basis with hourly bonuses added for good measure.

How long is this going to go on for, I ask our doctor? My mind is on the evening hours when I will be pulling night duty again like yesterday. It is beginning to get to me, this whole process, I have to admit. "A matter of hours", is the answer, and I don't want to even think of being the lawyer asking how many hours we are actually looking at. I will have to take it as it comes. At a blood pressure of 6 over 3, it can not last much longer though.

I find myself telling her again and again that it is allright for her to go, that she is all set to depart, and that nobody here on earth is holding her back. True, I tell her, I will miss her terribly as a soul mate and husband, a friend and companion, a lover and a confidante - and nobody will be able to fill that void or take that place. Then there will be plenty of memories of so many things we did together: crazy and brilliant ones, transient and durable, wicked and benign, silly and serious. And so I whisper in her ear more and more.

Lacher prise. That is what the French call 'loosen your grip'. For Lara to let go, or to give up control, is almost anathema. And so she holds on to dear life, for as long as she can - until the odds become truly overpowering. Survival instinct is one of the most deeply rooted; and with instincts, as I keep repeating, you don't negotiate.

People and medics have asked me repeatedly if I was ready to stay with a deceased Lara in the apartment by myself for the whole night, if it came to pass. Each tiime I gave the same answer: that I did not see the problem; that, to me, between the two of us, it was tantamount to the ultimate intimacy.

Our doctor passes by at 8:45PM and shakes her head. I have never ever seen such tenacity in the face of death, she says. She is supposed to be well on her way to a preplanned demise, deep deep under cover. But she is still with it, although soundly asleep, but hardly more than that.


Floating

Tuesday 12 June morning and afternoon

It is raining in Brussels and the clouds cut out most of the daylight. I am sitting across from Lara who is in a deep induced sleep. Every ten, fifteen minutes or so, I get up from my Sarajevo story and whisper soothing words into her ear, letting her know all sorts of things, but mainly that I am there, and looking after her.

It is 10:54AM. Light gurgles emanate from her throat. She no longer has the oomph to cough and clear her throat. Still she is hanging on, my girl. There is nobody else in the room but the two of us, and the atmosphere is tranquil, though mildly upset by occasional thunderclaps. The light is somber. A fitting context somehow to the prospect that, soon enough, of the two hearts now beating in the room, one will be utterly still. A vibrant, beautiful and promising life will have snuffed out like a candle, the flame getting smaller and smaller, until - poof - a whisp of smoke emanates from a glowing wick. I am no longer wishing that moment to move forward. I'll take it as it comes. Let her decide her own moment. She has my blessing, how ever long it will take - as long as serenity and peacefulness are reigning. You only die once, I tell her, so it's entirely your call.

Her blood pressure now stands at 7 over 4. Low, even for someone like Lara, who regularly, in full health, clocks in at 9 over 5,5. Pulse at 115 (normally 55 for Lara). At 12:30PM the little monitor doesn't pick up a pulse anymore from her fingertops (earlier that morning our doctor had trouble finding her pulse at the wrist). Her breathing is quiet, steady but very shallow. I check her pressure: 73 over 45, pulse 115. At that pressure kidney failing is a stark possibility, says our doctor, and other organs may follow.

There is hardly any point to measuring pressure anymore. Now I just have to let her be.

"You're going to lose me", she told me on 19 April. I couldn't wrap my mind around it then, but learned to do so over the ensuing six, seven weeks. Now the moment is near - I know it. But the waiting is long. It is 3:19PM and she is still breathing. Fighting to the last - what else did I expect?

maandag 11 juni 2012

Siege

Monday 11 June afternoon

I can't believe I am writing all this down as if I were a spectator looking down from behind a window into an operating theater, making notes for my next clinical report. This must be denial kicking in. Whenever my presence is not contributing or even redundant, I phanatically read a new book I received yesterday as a present from a friend: "The Cellist of Sarajevo", by Steven Galloway. I go through it like a person possessed. Anything to help put a distance between my soul and reality. Telling about the Bosnian capital under siege, the story is easy to relate to for both Lara and myself. Lara was stationed in Bosnia in 1996 and the two of us drove down from Banja Luka to the city several times as it lay partly in ruins -  she on business, I as 'Mr. Gabriel' (oh, she liked that).

Lara woke up again to discuss with her doctor (over the phone) and careproviders (at her bedside) the best way forward. As from 4:30PM the levels of morphine and Tranxene are set at triple the dosage: 30 mg of morphine/day and 37.5 mg of Tranxene/day, both with possibility of hourly so-called 'bonus' doses of the same quantity. (These are still modest levels.) The sequel will be discussed with our GP as she visits this evening. In case Lara will no longer be wakeable (as is likely at that dosage), Isabelle and I will determine the rest of it.

Lara washed her teeth one last time with her own toothbrush and real toothpaste, rather than staining them with iso-betadine as she has been required to do since her hospitalisation in March. Using a regular adult brush carries the risk of bleeding gums (remember, no platelets) and even more so of bacterial infection. What a delight, she said.

As soon as the intravenous morphine pump is set in motion again, Lara solemnly takes off her wedding ring and hands it to me. We both agreed that, by doing so, she wasn't releasing me of my wedding vows before their time.

It takes quite a while before the effect of the morphine and tranquilizer has played out, even with the bonuses given to Lara right from the start. A coughing fit is in the way. I measure her saturation and her pulse: both stand at 96, quite reasonable. Pressure 9 over 5. Temperature normal. I stretch out alongside her and she rests her head against my shoulder, our arms intertwined. We exchange our last carinos.

A little after 5:15PM, Lara increasingly has trouble focussing. I tell her to just doze off. One careprovider asks if she is afraid. She nods. Of course, you are. That is why she clings to her presence in the here and now. Security. She takes time to put Caroline's balm on her chapped lips. At around 5:45PM she says: "I am slowly going away. In a good way." Half an hour later, the sedatives become stronger. "I am wandering but I am still here", she says. Her face and hands are cool on the touch. "Are you boarding yet?", I ask. Not even close, is the answer. Not even cueing? She shakes her head. What then? "Shobbing", she says. Leave it to Lara to secure a last minute bargain.

Monday evening

At 6:30PM she seems to have finally boarded. "You're making the people on the plane laugh", she tells me. I seem to have slipped aboard with her to make sure she's comfortable.

At 7:30PM she is soundly asleep, but still wakeable it seems to me. And indeed, as our doctor enters the living room, Lara opens her eyes and smiles at her. "Flap your wings carefully", I whisper in Lara's ear. She nods. It has been her longstanding adieu to anyone on an airplane who is about to take off.

At 8:15PM her pulse measures 8 over 5, her pulse standing at 126 beats/minute. Her saturation is still at 96%. At 8:40PM we enter final approach. Just before she goes under she turns to me and asks: "Can you fluff up my pillow?" "It will be my pleasure", I tell her. Everything is in place and I am given instructions. Two glass vials of Dormicum 5 mg are emptied through the central line. The doctor and the nurse take their leave. I am staying behind with Lara in the apartment, just the two of us. Alone at last. She breathes quietly. Pale is her face. Hard to say if she will pass quickly, or if she will take her time. A matter of hours at most, I'm told. My head is full of cotton.

Back to Sarajevo, a city besieged.

Then, in a spectacular development at around 11:00PM, I find myself moping about in the living room (where Lara's bed sits), when suddenly I hear: "Hey, Dingdong". I look over: Lara is sitting up and her eyes follow me around the room. In a flash it occurs to me that - praise the Lord - there is reprieve from death after all! Apparently one can come back out of it as if waking up from a nightmare. In an impulse I tell her she's not supposed to be awake and to please go back to sleep - admittedly an inane reaction on my part. "What's happening?", she wants to know. "I don't think this is supposed to happen, I said, I will call the doctor." Meanwhile I give her the water bottle which she empties in no-time, for her mouth is parched.

So our GP hops over in under ten minutes and is a tad taken aback at the turn of events, not knowing the answer to Lara's obviously pertinent question. The two of them discuss in French about what went wrong and how it can be made right. Lara makes the point that now she is really getting scared, for she no longer trusts the protocol chosen. Meanwhile a nurse is summoned and a different way of administering drugs is chosen. Pretty soon her eyes are swimming again and she has to lie back in order to absorb the extra morphine.

That's when Lara and I exchange what would be our last words, where I tell her - a bit counterintuitively - to relax and go to sleep and everything will be allright. Lara is not at all sure that it actually will be allright, since the point is she doesn't really want to wake up anymore and how can she believe she won't? Fact is from here onward we managed to keep her sedated until the end came, even though it took far longer than the doctor loosely predicted as 'a matter of hours'. I give her one last kiss and she kisses me back. (Oh, I liked that.)

Doctor Schroyens, our homeopathist, later tells me that these sudden surges of consciousness in a terminal patient occur exceptionally in response to homeopathic treatment. Astonishing the hospital staff, such episodes can be spectacular, elaborate but circumscribed, finite and always returning the patient to sleep or coma, with death not far behind. That is what happened to Lara here. Of course.










Fantasie

Monday 11 June morning

Once her clothes for the day were in order, I made myself scarce. Lara's entourage was more than complete with four people: two nurses, a hospice and the domestic help. I would just be in the way.

Lara is asleep, her breathing shallow. Everybody has gone now, except Schubert's hauntingly beautiful Fantasie in F minor for piano duet. He wrote it while aware he didn't have long to live anymore and somehow it carries that sense, especially in the closing bars. Listen to it.

She's had a good night's sleep. We both have, in fact, although I need to tell you that after fifty-odd days, I am fed up with sleeping on the couch. I miss the bounce of our conjugal bed. (Sometimes I dive in for a quick snooze.)

This is the first morning where she tried to get out of bed and join me for breakfast, but then slumped back, shaking her head. She could't muster the strength. She had her cappuccino and her cereal in bed, spoon-fed; she looked over to me, a little helplessly, to check if we were eating at least at the same time. We were.

Our doctor, coming in at around noon, was amazed to see Lara awake the way she was. She was expecting to see her in a deep sleep. We talked the three of us and decided to give Lara a bonus dose of morphine and of Tranxene from the pumps. She felt the effect immediately. Knowing she might not regain consciousness enough at this stage of the process, she placed a few phone calls to say goodbye to her siblings, some of her dearest friends and called in Ilona, our domestic help, who was in tears.

I was wondering, she said, "Am I really saying goodbye to somebody else? Is this real?" It is, I assured her, holding her hand.

At around 1:00PM she started to slowly slide into sleepiness, and her movements became slow and deliberate, for example when taking a sip of water. It is as though she is still clinging to reality with her last bit of energy, resisting full surrender. "I have no idea what's happening in the world", she said. So I read her the headlines from this morning's Herald Trib.





zondag 10 juni 2012

Samara

This is so so sad.

Lara has allowed herself to drift away. The adhortations from her doctor, her husband and sundry friends, including Elisabetta, seem to have taken away the last hurdles. She feels free and unhindered to pursue her ultimate destiny, one that everyone assures her is inevitable. She knows it, too. In fact, she has known it since doomsday 19 April. "You're going to lose me", she told me then, quick on the draw as usual.

But people don't die on command. She may have to stay adrift for quite a while longer, marooned on a raft after a shipwreck. The Antwerp professor, the other day, predicted a few days to a few weeks for her demise. Well, a few days we've already had; how long is actually a few weeks? And will she be aware the whole time - some of the time? Out soon?

Already, Lara realises her loss of strength. For over a week now, she has started out every day stating she feels weaker than the day before. No surprise there, with her blood values. For someone with a penchant for fitness, with an agile and athletic physique, being overtaken by her body must be the ultimate onslaught on her person. This is why she forces herself, no matter what the cost, to join me at the table for every meal; why she insists on putting on proper attire during the daytime instead of staying in nightwear all day long. She wants to stay in control, retain a modicum of normalcy.

Control will rapidly be coming to an end, though. She'll be bedridden, unable to stand on her own legs any longer; totally dependent on a string of caretakers and her dumb husband. Her existence will be more and more vegetative, devoid of activity, including the use of her wits. Yet steering herself deliberately into that phase, may not expedite the early demise she wishes for. Her body can hold out longer with minimal activity, than when inhabited by someone who refuses to die no matter what, and kicks and screams. The lower her self-assertion, the longer it may take her actually to cross the threshold. Ironically, the harder she seeks death, the later death may seek her. We all have our meet with destiny, whether in Isfahan or Samara. Can't rush it.

I am beyond sadness for the moment. There are no tears for the time being. I am in the thick of desperation. Why? I am impotent keeping Lara alive, and equally impotent letting her die, which is what she wants. I am caught.

This is a bizarre reversal of roles. Here lies the love of my life, the woman I have been positively smitten with for twenty years, my soul mate. And what I want for her is to die serenely, peacefully, painlessly - and above all, soon. And the reason I would like to see her die, is that I cannot possibly keep her alive.

If she saw a point to this all - in other words, if she saw cause - she would be the last man standing; I mean she would fight mean and vicious. And that's the thing: she doesn't see the point; there is no cause. That is why she has given up. Not worth the effort if I am to meet my destiny anyway.

Chariot

Sunday afternoon

Her hands are a bushel of fingers on the touch, their color lifeless, her complexion pale. Coughs rip through her chest, her ribs and tommy heaving in spasms; useless dispense of energy, disconcerting also to the lookers-on. "I have had enough", she tells her friend Andreina, "I don't need this anymore. What's the point? No lack of love for people that are here, but I am tired, just so tired now." A cough syrop, a cough tablet, homeopathic medicine, they barely seem to give her solace. If only we could get that barking cough to stop, the remaining silence would match the serenity that otherwise reigns the room.

She can't take any more visitors the rest of the day. Wants to be left alone.

Lara wants out, but is still too resourceful for her own good, really. The last of her reserves - how deep are they? - keep her alive, be it in waves of fitness.

In the middle of last night, she dreamt that the heavens opened and a chariot appeared, someone telling her there was a place for her. She remembers not taking up the offer. Next time she may decide to just hop on board.

I mean, we are at that point. For all the love in the world that I carry for her, I hope she will go soon.



Death And The Maiden

Sunday 10 June morning

We remember it well, Lara and I. In the spring of 1992, we took Lara's friend Rama (who had just gotten to know me) to a matinee in a New York theater where a play had opened to great reviews. The Chilean playwright Ariel Dorfman had written an arresting piece for three actors, called "Death And The Maiden". The stellar cast consisted of Gene Hackman, Richard Dreyfuss and Glenn Close. The play appealed to us with a directness that was almost raw, set as it is in the aftermath of massive and egregious human rights violations under General Pinochet - or General Videla. To Lara and myself, human rights were our bread and butter; it was what had brought us together, a language that bound us very tightly. The title of the play was borrowed from the Schubert Quartet by the same name. The music itself is stunning, and once you have heard it, will stay with you for days. Haunting.

Leslie, Lara's sister, thought it would be appropriate to play it for Lara. She was right. It now rings out softly over the stereo as I write. I look across the room and surmise we're going to have a late breakfast today. Then again, what are slow Sunday mornings for, after all? Following the morning routine, Lara is completely out and a few couging fits have taken a lot of buzz out of her from the start. She just lies and listens, letting her consciousness go were it will take her.

Our GP, was here around 10:30AM. She joins us again for a cappuccino and marvels how Lara sits at the table putting away her breakfast with gusto. As I escort her to the door she tells me: "Astonishing she can still do what she's doing with so little in her veins. I have never ever seen this before. She must be able draw on hidden reserves somewhere."