I am more than I can dream of

The Looking-Glass Sisters by Gøhril Gabrielsen

The Looking-Glass Sisters
by Gøhril Gabrielsen
translated from Norwegian by John Irons

Once again, I feel that I haven’t given a Peirene book a fair chance. These short novels are intended to be read in a single sitting and those I have read in a couple of large chunks do seem to be those I have enjoyed more. I haven’t had huge chunks of free time lately, so my reading has been split into 20 minutes here and there, which I don’t think really does any book justice.

But I digress. I should tell you about this book.

It’s the story of two middle-aged sisters, Ragna and her younger sister, who narrates the book. The narrator suffered a childhood illness that has left her body severely weakened, so that she never leaves the house and is largely dependent on Ragna. They have lived together alone since the death of their parents and their relationship is bitter and twisted, but it works…until a man comes into Ragna’s life. Johan upsets the delicate balance, revealing alternative paths for the sisters.

Continue reading “I am more than I can dream of”

You had to have a lot of time left if you were going to start reading Bolaño

The End of Your Life Book Club

The End of Your Life Book Club
by Will Schwalbe

After this book received universally good reviews from people I trust/have similar taste to (there’s a strong correlation there; I should probably investigate that sometime) I knew I would read it eventually, but I worried it would be super depressing. The “end of your life” part of the title is not euphemistic; it really is about the end of someone’s life. But it was a surprisingly entertaining, easy read. I’m not saying I didn’t get sad at all; I’m not that cold-hearted.

This is a memoir written by American publisher-turned-journalist Schwalbe about the books he and his mother Mary Anne read together when she was dying of cancer. They knew from her first diagnosis that the cancer was terminal, so there is no question how the book will end. This gives the book a largely matter-of-fact background of chemotherapy, pain relief and other palliative care, but also the emotional side of dealing with and preparing for death.

“I was fine until right after I fastened my seat belt. For me, there’s something about planes that isolates and intensifies sadness, the way a looking glass can magnify the sun until it grows unbearably hot and burns.”

The gradual change (for both Will and Mary Anne) from denial to anger to acceptance is clear without being overtly discussed. By which I don’t mean that they ever deny her diagnosis or expect a magical turnaround, but initially they don’t discuss death at all, they just get on with the surgery and trying out different chemo drugs. However, it is of course there the whole time. In fact, when Mary Anne is diagnosed, her daughter, Will’s sister Nina, is about to move to Switzerland with her family and must make the decision whether or not to go, which of course boils down to: does Mary Anne have weeks left or years?

This uncertainty is something I haven’t really read about before, though I know (and have known) people for whom it is true, and it is in some ways harder on the family than the fact of death itself. How far ahead do you allow yourself to plan? Do you book holidays? Do you throw great big birthday and other celebratory parties because they might be the last one with her? Following Mary Anne’s lead, the family slowly figure all these things out – while she can, she wants to do everything she can, including continuing to work and travelling abroad. As her health worsens and her energy levels drop, plans simplify and are built around what she can and can’t do.

“Those extraordinary chemicals, with their remarkable names, now sound totally different: Gemcitabine. Xeloda. Before they sounded like harsh detergents. Now they sound cool and magical, like a new rock band you’ve come to love.”

Mary Anne was a wonderful, inspiring woman. In fact, the whole family are and made me feel quite inadequate at times, but Mary Anne especially. After responding to an unsolicited begging letter from a nun, she quit a very good, secure job as the head of a New York girls’ school to start a charity for women refugees. She travelled to many of the least desirable parts of the world to meet for herself the people she was helping. The danger that she had put herself in time and again is brought home by the fact that during the timeline of this book, a friend and colleague of hers is held hostage by the Taliban in Afghanistan.

But most importantly, of course, at least for this to be the book that it is, Mary Anne and Will share a deeply ingrained love for books. They discuss the books they read in depth, which appears to be something they have always done, but the difference now is twofold – they are choosing to read the same books, even calling it a book club, and they are spending more time alone together than perhaps ever (Will is the middle of three children, after all) as Will accompanies Mary Anne to the doctor, to chemo and spends more time with her at home. (I should add here that so too do Will’s father, brother and sister and all their partners, but this book is about Will and his mother and their time together.)

“In the summer, Mom and I had read slender books. Now we were reading one long book after another. Maybe that was one way of expressing hopefulness—you had to have a lot of time left if you were going to start reading Bolaño, or Thomas, or Halberstam…I remarked to Mom how all the books we were reading then shared not just length but a certain theme: fate and the effects of the choices people make.”

The books they read are many and varied, though fairly firmly literary. Each chapter is named after a book that was of particular significance but the full list of books discussed is provided as an appendix and is six full pages long. You don’t need to have the books to follow the discussions of them but when it was a book I’ve read, I did feel a little glow of “I’ve read that! I could join this conversation!” The book discussions tend not to be so much about the style or quality of writing, but more about the subject matter. Often Will uses a book as a jumping-off point to tell us about Mary Anne’s life or anecdotes from earlier in their life together.

Ridiculously, considering the situation, I found myself at times jealous of the relationship Will and Mary Anne have through books. Not that I’m not close to my Mum. In fact, she gave me this book, which at the time I didn’t twig was especially significant. But currently we have very different taste in books. She likes memoirs/biographies to the exclusion of all else, so I don’t think we could come up with a very long list of books to share. Then again, this is of course a memoir and I really liked it, so perhaps I should lend it to her and have a mini book club next time we see each other. Hmm… But back to the review…

This feels like a very honest book. We learn about Will’s life, about the books he didn’t finish reading even though Mary Anne was eager to discuss them, about the blog that Mary Anne wrote in Will’s name to keep their extended family and friends up to date with her health (she felt it wouldn’t be suitable for it to written by her!) and about Will and Mary Anne’s different attitudes toward religion, plus of course about the long slow decline of terminal cancer. In the end, it was sad but not heartbreaking. I’m not sure if this is because Mary Anne was in her 70s and had lived a rich and full life, or if it is down to the way Will writes about her, about how intellectually sharp and full of hope and kindness she remained to the end.

I think Schwalbe found the right combination of topics here, so that it isn’t all about pain and suffering, or sorrow and self-reflection, or a biography of a great and inspiring woman, or even just about great books, but instead it’s a book that pays tribute to Mary Anne and appeals to the intellectual and emotional draw of books, while also dealing with a tough subject that we will all have to face up to at some point. He also found the right balance between writing about the pain and difficulty of his mother’s slow death and the positive side of the situation: he had the warning to start spending more time with his mother, and had rich, rewarding times with her at the end of her life.

I don’t think Schwalbe is himself a great literary writer, so this doesn’t have the writerly quality of Joan Didion’s memoir The Year of Magical Thinking, say (which in fact is one of the books discussed), but I suppose that makes this book more accessible and serves as a reminder that not every avid reader is also a great writer. I can’t see myself checking out Schwalbe’s book about e-mail, but I do think that if I read books covered in The End of Your Life Book Club I might well come back to it to remind myself what Will and Mary Anne had to say!

First published 2012 by Hodder & Stoughton.

Source: A Christmas present from my Mum.

These are some of the things I know

I Remember Nothing and other reflections
by Nora Ephron

I wasn’t planning to read this. I visited my good friend H last weekend and saw it on her shelf and remembered H had said good things about it. So I read it.

In the light of Ephron’s very recent death, it was horribly poignant to read her memoir that begins with thoughts on memory loss and ends with thoughts on cancer, but in-between there is a charming, funny story of a life lived fully and happily.

Not one to be entirely conventional, Ephron tells her story in a series of essays. Some are very much memoir – how she began her career in journalism, for instance, an intriguing study in the sexism of the 1960s – while some are more rants on a topic – online Scrabble, the pointlessness of certain diets, e-mail – and others are really anecdotes. Which were perhaps my favourite bits:

“This is one of the things that drives me absolutely crazy when I see movies that take place in the fifties and early sixties: people are always saying ‘fuck’ in them. Trust me, no-one threw that word around then the way they do now. I’ll tell you something else: they didn’t drink wine then. Nobody knew about wine then. I mean, someone did obviously, but most people drank hard liquor all the way through dinner…These are some of the things I know, and they’re entirely useless and take up way too much space in my brain.”

Ephron’s writing style belies her early days in magazine feature writing. It’s a friendly, chatty style that drops in facts and cleverness without appearing to do so. Not that she hadn’t moved with the times. It did not feel like the writing of an “old person” at all:

“Alcoholic parents are so confusing. They’re your parents, so you love them; but they’re drunks, so you hate them. But you love them. But you hate them.”

There are some sweet quirks of the book. Three or four recipes are included, for example. Though after the chapter about how her friends don’t like her cooking it may or may not be worth following said recipes. There are also some lists. Mostly very funny ones but, on a bittersweet note, the book ends with “What I won’t miss” and “What I will miss”. However, my favourite part was the essay on journalism:

“It was exciting in its own self-absorbed way, which is very much the essence of journalism: you truly come to believe that you are living in the center of the universe and that the world out there is on tenterhooks waiting for the next copy of whatever publication you work at.”

Ephron comes across as a wonderful, astute, funny woman who was well loved and had lived well. What more could anyone want?

First published in the US in 2010 by Alfred A Knopf, an imprint of Transworld Publishers.

The Sunday Salon: Lupus sucks

The Sunday Salon

So last weekend‘s feeling a bit bleh turned into a lupus flare and I have lost half my week to the black hole of SLE. Which sucks.

I’m afraid I’m going to vent a little bit about being ill now. It is not my most interesting topic. In many ways I should be grateful that my major lupus symptoms – fatigue and brain fog, with added dizziness and double vision if I push myself – are not painful. Even my lupus symptoms that do hurt – headaches and joint pains – are quite low-level pain. My specialist called them “irritants” once, which is probably accurate but also a little demeaning. Because pain or not, lupus can (and does) still incapacitate me. When it flares I can’t think, I can’t make the most basic decisions like what to eat, in fact I get panicky if faced by a choice. I can’t hold a conversation. I certainly can’t read a book. Standing up long enough to shower completely drains me.

It passes. I am lucky that I only get really bad for a few days at a time now, thanks to medication and fatigue-management techniques. I am lucky that Tim knows me well enough to spot the danger signs and make me rest (if I can be persuaded). But it never goes away. I am always tired. I am always one push-too-hard away from being “lupus tired”.

Rant over.

Seek the truth

While I have not read much this week, I do have a small backlog of book reviews so I was still able to post about Balthazar and Mountolive. Yesterday Tim took me to the cinema to see Cabin in the Woods (which I knew nearly nothing about beforehand and that was totally the best way to see it so I will say nothing other than “it’s great”) and to Foyles bookshop, because the TBR is always hungry. Today I will be mostly sleeping.

How was your week?

The Sunday Salon: All systems go

The Sunday Salon

After last weekend‘s perfect mix of activity and downtime, it feels like life has switched up a gear. Evenings and weekends are full of plans, with many more things needing to be slotted in – when will I find time to read?

One thing I did this week was finally get my latest film processed. I took most of it on our holiday in Wales and I’m pleased with how some of the shots came out, though the scans don’t do them justice. We must find a way to display more photos in our house!

Look up

I haven’t been feeling 100% (it happens) so I have been tempted on getting home from work to just stare at the TV rather than read. Which makes sense when my brain is frazzled but the rest of the time I think reading actually makes me feel a lot better than even my favourite TV shows could. What about you – do you read when you feel unwell?

I also went to the zoo with Tim and a couple of friends. We go to the zoo a lot and always have a good time. Bristol Zoo is very good about breeding and conservation programmes and doesn’t have many large animals so I don’t feel animal lover guilt and can just enjoy the cute animals.

Baby turtles

10 May is World Lupus Day

I have lupus and it sucks. It really does. But I don’t have it nearly as bad as most lupus patients. I am a mild case. I manage to have a full-time job, a social life and fantastic support from my family and friends. Today I urge you to find out more about lupus. Read about it at The Lupus Site, Web MD, Lupus UK, St Thomas’ Lupus Trust and London Lupus Centre. Pass on those links. Talk about it. Stop this from being the disease that no-one knows or understands.

I was diagnosed with lupus three years ago. The blood tests were conclusive (something that is not always the case) and the huge relief at finally having a name for the mysterious ailment that had been troubling me for over a year soon gave way to nervousness at being diagnosed with something I knew nothing about. At the rheumatology clinic I was handed a slim leaflet produced by Arthritis Research (the two diseases share a lot of symptoms and, indeed, patients) and told not to worry, I appeared to be a mild case. But a mild case of what exactly?

The leaflet was essentially a list of symptoms and medications. As lupus symptoms vary from fatigue and headaches to organ failure and death, this was not very comforting. So I turned to Google. The Wikipedia entry was even more worrying. It talked a lot about the more serious symptoms and some unattractive related ailments. One of the doctors I had spoken to had warned me to be wary of looking lupus up on the internet because outside of the UK it does tend to be a much more serious disease. However, a scan through some lupus chat boards proved that there are British lupus patients having a really bad time of it too.

The problem with a disease like lupus is that the symptoms are so many and varied that it can be hard to pin down what is the disease and what isn’t. For those first couple of years, every ache and pain caused worry as well as, you know, pain, because I was concerned that I might have developed a new symptom and if that was true then it might never go away.

Because here’s the thing: lupus is chronic, systemic and there is no known cure. Although my rheumatologist says that the symptoms I first presented with are likely to be the ones I always have, there’s no guarantee I won’t develop new ones. And I can learn ways to limit or cope with the symptoms I do have, but they will never completely go away.

I have learned to cope most of the time. My fatigue specialist has gone from handing me tissues for the inevitable tears to commending me on my healthy appearance. But it comes at a price. My life had to change. In my mid-20s I suddenly had to cut my social life down to almost none. I have to carefully space out what activity I do, but at the same time do enough exercise to stay fit (because fatigue is a big problem for me and the less fit you are, the quicker you tire). It’s a real balancing act that is best explained by the frankly brilliant Spoon Theory. I have to be über prepared for any trip out of the house – in winter, I must take extra care to keep my hands and feet warm and for the rest of the year I have to wear high-factor suncream and cover my head at the merest hint of sunshine. I have learned to love TV in a way I never used to because all-too-often I am incapable of doing more than staring at that screen.

What I haven’t yet dealt with is the guilt. I am constantly letting people down. It’s not my fault and I don’t want to do it, but I am always cancelling plans with a friend or taking time off work on sick leave. I hate that I have to be that person. I am so so grateful to my friends and, most especially, Tim for accepting and caring for the new lupus-fettered me.

It could be worse. I know that. I have a good life, by any standards. I’m happy. But there are bad days. There are days when I am thoroughly fed up with being too tired to do the things I want to do. There are days when I desperately want to read a book or plan a fun trip but my brain is not functioning well enough. And the frequent pain and blood tests are no barrel of laughs either.

So, yeah: lupus sucks. But it gets easier to deal with when more of the people you know understand what you’re going through every day, when your GP has read up about it and can advise you on the little things like flu shots and dry hands. So spread the word. And if you’re feeling generous, a donation to Lupus UK will always be welcome!

If I had one wish I'd ask for infinite wishes

A barman at our local asked the other day what I would wish for if I had one wish. I think my answer – “I would wish to never be ill” – threw him a little but it was the first thing my brain came up with. It’s a pretty selfish wish, when I could have plumped for world peace, or an end to all suffering, or for the proposed solutions to global warming to all immediately be put in place and to work…lots of things really.

The thing is, I’m ill a lot of the time. It sucks. I have a handful of chronic diseases that together conspire to have me overtired, in pain or otherwise non-functional for far too much of the time. I mean – just think what I could achieve if I didn’t have to rest for half the day and sleep for 10 hours a night; if I had bounding energy and enthusiasm. I could be an unstoppable force for good!

Which is not only selfish but megalomaniacal. Because who’s to say that I’ve got it right? That my ideas will make the world any better? We all think that if we ruled the world we could sort all the shit out but it’s not that simple, obviously. We all think differently. My perfect world is another man’s nightmare. Which is the basis for many brilliant books.

Do all politicians start out thinking that they’re going to make the world a better place? It must be so disappointing when it turns out to be all compromise and stalemates. Which of course was the take-home lesson of West Wing.

Anyway, assuming that you’re not allowed to ask for more wishes, which would clearly be cheating, what would you wish for?