MY HEART UPON MY SLEEVE

"It is as sure as you are Roderigo,
Were I the Moor, I would not be Iago:
In following him, I follow but myself;
Heaven is my judge, not I for love and duty,
But seeming so, for my peculiar end:
For when my outward action doth demonstrate
The native act and figure of my heart
In compliment extern, 'tis not long after
But I will wear my heart upon my sleeve
For daws to peck at: I am not what I am."

From William Shakespeare's Othello (Iago's lines)

 Painting by Elin Setara

By being honest and truthful about my situation I lay myself open to extreme vulnerability, but also to incredible love and compassion. I wear my heart upon my sleeve and invite people into the raw emotions that define me now. I might even say that I force them to make a decision as to whether they would like to be a part of this emotional journey - or not. Those who decide they want to be a part will probably find that they reflect a bit upon vulnerability themselves. At least this is what I am told by all my wonderful and caring friends out there.

The price we pay for love is vulnerability and ultimately grief. The day we decide to love someone we invite vulnerability in. And the day we decide to have children we ask vulnerability to be THE huge factor in our lives. No more peace and quiet, no more floating along in a carefree world. Welcome in, worry! Welcome, sleepless nights! Sit yourselves down on my shoulders and pull at my hair and give me headaches!

I spend nights at the Hospice now. Not every night, that's a bit too unpractical, but now that Norwegian Easter is on the threshold - with an enormous amount of public holidays compared to the rest of the world - I will be there continuously. I love being there - having him close.

During a very enjoyable jazz concert (Django Reinhardt style) at the Hospice this week, holding hands, my husband suddenly whispered in my ear: "What would you like, sweetheart? Shall I get you a glass of wine?" Oh, the bittersweet nostalgia of this question, the heartbreaking memories! Wheelchair bound and blind, he suddenly imagined us together in our living room, listening to music. As we have done so very often. And he thought of me and my needs.

Sushi & maki for me while watching over my husband

Colourful paintings by Bengal artist Elin Setara adorn the walls of the Hospice

My spare room at the Hospice

And our toothbrushes are together again... 

Jazz concert at the Hospice! 

Snow fell on Oslo again on Thursday, and everything was chaos. You should have thought we were used to it in this northernmost outpost, but well… when we've got accustomed to spring having arrived we're completely overthrown by a snowfall. Let's put it this way - Norway is the only country in the world where spring precedes winter and winter precedes summer… or something like that. No, I take it back! I spent a week in New York City some years ago and during that week there was summer, winter, spring, autumn - in that order.

Thursday also happened to be my youngest granddaughter Mira's 10th birthday and we went to a steak house to celebrate. This was Mira's own choice, and I thought the time was not yet ripe to discuss sustainable food with her. Mira and I unfortunately both love meat, and my perfectly cooked rack of lamb that I made us last weekend certainly had me hesitating yet again about becoming a total vegetarian.

AND we both love those unhealthy English breakfasts, complete with an authentic English sausage! 

My beautiful granddaughter is 10! (She's on the left - the other one - daughter - is checking her phone for later appointments…) 

Getting a delayed bus back - due to the snow chaos. Mira always delights in seeing me on public transport - "You're sort of always in a car, Mimmi…" (Another environmental challenge for me, I see that). 

Painting by Elin Setara

Love, vulnerability and sorrow have been important themes for me and my best friend Grete during our conversations this week. The initial words of this blog post were bits of the heartbreaking but oh so healing dialogue we've had.

I am paying the price now for having loved with open arms and wearing my heart upon my sleeve, and not least having been loved back - unconditionally. But this is what I think: Would I rather have been without it all and spared myself the grief I'm going through now? Would I have been happier without the deep fear that grips me when I watch my husband in his bed getting weaker by the minute? Would I have missed out on the nerves that practically vibrate on top of my skin while holding his hand, knowing that I'll lose him very soon and that his warm hand won't be reaching out for me?

No. Never. I'd do it all again.

COUNTING SHEEP

Beautiful sky this evening, outside the Hospice

Sleep - as I've known it - has ceased to exist for me. It defies me, does not cooperate, leaves me bewildered and blinking with tired eyes in the middle of the night. I've always been a sound sleeper, but now not…. not any more.

My insomniac friend Grete had something to say about my new condition: Welcome to our world. This is what we're used to. But you're spoilt with the easiness of sleep, so insomnia deals you a harder blow when it suddenly appears. You fight it, you question it, you're simply disbelieving.

And she proceeded to give me a lot of good advice - having merited a PhD in insomnia as she said - and I'm trying out this advice. Trying to blank out churning thoughts - which might work to some extent. In short it means not letting your spinning mind take control, but shutting it out. I've tried breathing exercises, I've even counted sheep.

I hate you, insomnia! I hate twisting and turning for two, three, four hours, before I finally fall into an exhausted and fitful drowse at about five in the morning. I know the meaning of "fitful" now, oh yes, I do! A couple of times I've taken an Oxazepam - which I'm not used to at all! - and have woken way into the morning as a total zombie. But the oblivion has been blissful.

Or - the other version - I fall asleep over my my book, subconsciously thankful that sleep is actually happening. Then I wake abruptly, check my phone for the time (not the done thing in insomnia circles) and my heart sinks. One hour's sleep - was that all?

Spring is here, so early this year! Can I begin to believe it? Glorious days! Though never have I had a sadder spring.

Of course I know what threw this old sleepyhead off balance. Every night I listened to my husband's breathing, reaching out to make sure he was there. Shallow rest in case he wanted to get up and be accompanied to the bathroom. But then again it's not all about him. It's about MY worries, my horror of being left alone, my helplessness, my self-pity. I lie awake, almost nurturing my fears. My enormous fears about not being able to cope without my rock by my side. The nightmare of not seeing his face and his body and his whole being next to me when I wake up. All of a sudden on my own, basically.

I am now getting used to living like this. On Tuesday March 17 my husband will have been away from home for six weeks. Have my nocturnal worries subsided? No. But my worries of not taking care of him properly are gone now - fortunately.

The Hospice is of course the most incredible place to be when you finally realise that palliative care is inevitable. Again I want to shout out loud and clear that the people who work there are ANGELS. They are in possession of a special care-gene that we should all learn from.

My conversations with the nurses soothe me now. Twice last week I arrived at the Hospice and the flag was on half-mast, and once the hearse was waiting outside with its hatch open. What can I say? The reality of our situation is driven home so mercilessly. It took me a couple of days to process this. I came to the conclusion that in a way it's okay too. It gives me an eye-opener, an awakening. This is what awaits us soon. This is why my husband is in a Hospice. It's final. Death is just around the corner now.

This is what the nurses tell me when I ask them how on earth they cope with their patients dying and not least KNOWING that they'll soon die: "We are used to it. This is our job. But we cry too. We are moved every day. But we see that death is not always the worst outcome after a long and exhausting illness."

Oh yes - they soothe me.

I've spent the night in my husband's room a couple of times. There's a spare room, there's a sitting area, TV, stereo, fridge - and a kitchen down the corridor where I can make him his favourite cocktail Caipirinha. And cut fresh vegetables for him to dip in spicy sour cream. 

The strangest thing happened the night between Friday and Saturday in that spare room at the Hospice. I fell asleep quickly and I slept well. 

Out with the boys - 2010. "I've got the tab."

Always in love with that closeness to the sea here in Oslo. Lunch with sister-in-law Tone at Strand Restaurant earlier this week.