28 February 2015

the gum battle, part 1

Rinsing every 4 hours, i.e. elaborate rinsing with a variety of sophisticated gadgets. It's a tad complicated and as for my taste buds, meh. I hope I don't have to do this for ever. When R comes back from his conference trip tonight, he'll think I set up a dentist's surgery.
After every rinsing episode I listen to this song. I would have a smoke but I gave up cigarettes approx. 35 years ago. Would mask that chlorine taste. And I could lean against my door frame, tap the floor in my cowboy boots and look cool and in control. (That's 15 o's in one sentence.)

27 February 2015

a bit over 5 years

I remember the day I got the diagnosis. I remember the phone call, you have autoimmune vasculitis. Come back tomorrow and we set out a treatment plan. Gosh, I was so happy. It has a name! I am real! I will live!

All giddy, I called R at work and he took the next day off from work and after the appointment, we took the slow road home through the foggy winter wonderland along the river. We stopped for lunch somewhere fancy and laughed and he was all calm when I cried a bit.

I remember when the doctors explained the medicines and the side effects and what I needed to look out for and what I must avoid (trivial stuff like no grapefruit, no alcohol, no ibuprofen, no aspirin . . .) and so on.  Oh, never mind, I thought. What's a bit of hair loss, weight gain, moon face, nausea, maybe liver damage, possibly gastritis and a lot of other stuff with complicated Latin names like gingivitis and stomatitis - compared to lung and/or kidney failure or death? You couldn't possibly argue with that.

Luckily, I am still waiting for the hair loss and the weight gain or the moon face. I have more or less accepted that bitchy gastritis and I let my GP worry about the liver values going up and down. But there are nights when I lie awake and consider my future life stretching ahead for years and years with painfully inflamed gums, always the taste of blood and the feeling of my mouth being on fire. And that, I admit, is the worst. At night anyway.

And now for some soppy music from the boy from Monkstown, a place that once was home:

25 February 2015

letting things fall apart, letting the world come as it is 
Pema Chödrön

Cycling for 40 mins home in the dark, first the forest, no moon, not a sound, just heavy rain, then down the hill and into the city, icy drops on my face and the obnoxious swishing noises from my not-anymore-waterproof gear, the drivers who come too close in their fat cars, who forget to indicate, who try and push me off the road. Note: try, not succeed because I roar at them, cursing and hissing I move through the evening traffic. At home I peel off the muddy layers trying to find my solid self underneath and fail, shaking and weeping and tired, my gums shot to pieces, at least I hope it's just the gums - she said to wait for it to calm down, maybe a week. If not, we'll try and save that tooth, promise, she said. Don't ask me how I slept, don't ask about the gastritis pains at 4 am. At least I got to hear the blackbirds before sunrise. My sister calls to discuss possible procedures re our father. Wishful thinking. I want to put down the phone. We cannot lock him in, he is convinced he does not have osteoporosis. Yesterday, he said to me, sod the tests, ignorant young doctors, what do they know.

Most of all, I want to be rid of that tooth ache or whatever it is. As for the rest, I can handle it. I think. Maybe.

24 February 2015

Whoa, I survived a week of tooth ache and a dentist visit and I still have all of my miserably few teeth! Glory days. 
While I sat in the waiting room I actually managed to calm down a visibly shaking woman. A lot of very fake bravura on my part met sheer desperation on hers. I felt almost strong and courageous after that and sat on my hands for the most time after she left. Just in case she came running back to me.

I am watching and re-watching Wolf Hall and not only because I try to follow the plot - I mean I can't, all these dukes and counts and earls and who must get married to whom and what has the church got to say about it. I am waiting for the next beheading, I think there is another one coming. I haven't read the books anyway. Historical novels are not my thing, but I have read and loved all the other books by Hilary Mantel (esp. her biography).
No, I am really watching Mark Rylance playing Thomas Cromwell, because he looks and talks a lot like a friend I had a long time ago. The kind of friend who knows what you need before you realise it yourself, who smuggles you into the staff canteen at the children's hospital after midnight because you have not eaten for the last 24 hrs since your baby was admitted with meningitis, who turns up unasked in a miraculously borrowed car during a downpour ready to drop you at the station in time - and without so much as a drop on you and so on. That was then. 
But he is also quite a bit like Thomas Cromwell, scheming, getting his way, always his way regardless. And at times my trust meant nothing.
We spoke on the phone a few years ago, after a friend had died, we spoke for a good long while and it felt almost right again. I know he has been asking about me, he knows I have been asking about him. He is getting on and one day someone will call with the news and I will board that plane back to Ireland. Maybe.
Anyway, Wolf Hall is splendid. 

19 February 2015

from a wonderful man

Over the last few days, I have been able to see my life as from a great altitude, as a sort of landscape, and with a deepening sense of the connection of all its parts. This does not mean I am finished with life.
On the contrary, I feel intensely alive, and I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more, to travel if I have the strength, to achieve new levels of understanding and insight.
Oliver Sacks on learning he has terminal cancer

15 February 2015

As hard as I try, I cannot imagine what my mother may have been like as girl. Here she is maybe five or six years old. We used to love it when she told us stories of her childhood adventures, the horses, the house with the lion sculptures in the park, wild games with her grandfather, running away from her nanny. How many of these were really only tall stories, embellished over time? Does it matter?

This morning I looked into the mirror and yes, she looked back at me again. Some days, I don't mind that much. Today, for an instant, I also saw my old woman self, a mix of myself and my mother and my sister, a strange new woman with a somewhat incredulous look.

I wonder when I will start feeling old. Of course, my body often feels old but only because of the connotations between illness and old age that have settled inside my brain without permission. No, I mean feeling old and resigned about it.

For some years my mother had a thing about haircuts and how they take away years. So she had her hair cut really short and would wear my brother's jeans. 
I don't go for any of that but I wonder whether she ever felt old when she looked into the mirror. And what about her mother? My grandmothers. I start to feel dizzy.

12 February 2015

Lot's of oh dears fuck this. Back at work, that's the good thing. Whereas cycling in the cold air, uphill etc. through the windy forest, was probably unwise considering the feeling of someone sandpapering my bronchioles - thoroughly - since I got back.

Snowdrops and crocus are up but that won't do. I want spring. Now.
Too early, yes I know. 

My father's bruised back has turned out be a lumbar fracture requiring surgery. He tried his best to act haughty and superior during his week in hospital but his voice sounded like that of a lost child. Today, of course, all this has passed as he lectured me over the phone on the future plans which basically involve him learning to walk unaided again. He is most confident that this will be achieved by mid March as he has tickets booked for operas and whatnots. His female friends here and there may get impatient. And no, no walking aid. Certainly not.
I want to admire his resilience and his arrogance. He could just as easily pack it in, like the next best 86 year old with mobility issues, read the papers, get meals-on-wheels and watch tv.  That would be the easy option for us, I know.
I remember my granny just before she died (a few weeks before her 103rd birthday). When I phoned her she used to confuse me with one of her daughters-in-law. Once I tried to correct her but she cut me short. That girl is too young to make phone calls, she said. Stop pretending.
That was twenty years ago, and I don't remember now whether she told me over the phone or someone else who then called me, but one day she decided that this was her last walk, that from now on she will stay indoors. She went to bed and died that night.
My father was her youngest, an unwanted afterthought. There was never much love between them or between him and his father, but he was dearly loved by his siblings, who all died in their early 50s. So those two, mother and son, had to battle it out for long years all alone. Sometimes, this makes me so sad, other times it explains a lot. But mostly it's just a confusing mess.
I know that I try to push my idea of family onto him. He fights it mostly. But as long as I come with a cake or some other treats, he'll open the door.

08 February 2015

Thanks to Robert, I spent most of last night with John Martyn. This is nothing new because John  Martyn features highly in this household. You could say that his music has been the soundtrack of my life with R, right from the very early hours. There was one particularly frantic dash across London in the summer of 1979 to hmv records where I spent most of my money on any and all of his albums before racing back to Victoria Station with seconds to spare before the boat train left.

So I watched the bbc documentary and of course he comes across first as a rite messer - the loudmouth, the wild one, the drugs and the drink. It's all there. But also there is the sadness, the quiet genius, the minute glimpses of deep loneliness and honesty. I read somewhere that he referred to himself as not a folksie, but a funksie. Whatever, his music made my life better in so many ways.

05 February 2015

You can deal with whatever life brings you even if you find yourself between a rock and a hard place.

Too long for a bumper sticker.

04 February 2015

Your word for today is: ninguid, adj.
† ninguid, adj.
[‘ Snowy; covered in snow.’]
Forms:  ningid,   ninguid
Etymology: <  post-classical Latin ninguidus (also ningidus) snowy, covered in snow (late 4th cent.) <  classical Latin ninguis snow (cognate with snow n.1) + -idus -id suffix1.
 Obs. rare—0.
  Snowy; covered in snow.
1656  T. Blount GlossographiaNingid or Ninguid, where much Snow is.

03 February 2015

don't be afraid of the light that shines within you

Today, I remembered that once again I forgot all about Imbolc - and it's the most positive day of the year! When the light comes back!! Celebrate!!!

Instead, I gathered my wits and my miserable little bits of energy in a tight bundle and took the train down the magic river valley, all grey nothingness with the odd snow covered north-facing slope. In a feeble attempt to limit exposure to yet another load of infectious agents I opted for first class. No, that's an outright lie, because when I booked the ticket online, weeks ago, I fell for the upgrade spiel and clicked on the magic button, maybe secretly guided by some deeper knowledge of this prolonged bronchitis encounter, who knows. 

Well, first class with all its legroom, fancy antimacassars and free coffee is boring and very very silent. Surrounded by blasé people who probably think that eye contact is spreading diseases I occasionally had to fight the urge to unplug my headphones and share this amazing podcast. Just to prove that I was not listening to some rubbishy pop or whatever they all thought I was doing. It almost felt as if my mother sat across from me. Almost. Actually, she would have enjoyed that podcast.

My lovely doctor was ill today, so I was seen by her boss who is an eminent authority on autoimmune vasculitis in this neck of the woods. Thanks to my lowly statutory health insurance status I usually never come near her. Which is just as well. She greeted me with Do you always have such dark rings under your eyes? My mother would have walked right out of the room, but I stayed, obviously, and got the full treatment incl. throat and nose swabs (yes, they do hurt). 

I must have looked a fright after that because the taxi driver offered me a lozenge and when I asked whether he had seen any sunlight, he turned of the main road, switched off the meter and showed me the view over the hills with a tiny bit of sun hiding behind the clouds. Then he told me all about hockey and how he used to play it when he was a boy in Pakistan and how people foolishly think cricket is superior. I almost asked him to come back with me to my first class compartment, we would have a great conversation.

Once again, I am waiting for results while pretending to enjoy my fabulous life. No, no, seriously: spring is on its way, all will be well.