What I’m Into (June 2014)

no make-up selfie

no make-up selfie

Is it really that time again? June has blurred past me. I’m still dancing with the darkness, so it’s a bit quiet around here till September, but I’m pleased to report that I’ve had more energy this month than I’ve had for ages, and I’ve been chip-chip-chipping away at my book (a memoir on how it feels to have ME), and have been reading a lot. This is a long one, so sit yourself down with a cuppa, and prepare yourself for some great reviews.

Personal life and the arrogance of art

Jon’s on sabbatical for a blissful three months, and he went for five days on his first ever retreat, and my parents stayed to look after the boy and me while he was away. Spain sounds like a thoroughly wonderful place to have a retreat, and this particular centre was really laid back, which was just what he needed. (And included paella).

Any retreat centre that has a swimming pool has got to be good

Any retreat centre that has a swimming pool has got to be good

I am housebound with severe ME, which used to mean I could only leave the house for an hour or two per week; this year it has meant I am only well enough to leave the house for an hour or two per month. (It represents a major energy spend, so I need to ‘save up’ for it with rest). One of Jon’s sabbatical research projects is on the history of art. I am loving learning vicariously through him, and this month’s trip out of the house was to an exhibition of Picasso, Warhol, Matisse and Dali.

What struck me about Picasso and Matisse especially is how they risked their art being thought of as ‘not good’ because they were determined to do something different. There is a beautiful arrogance in the works of great artists, and I am trying to learn from them. The other day, I drew a picture of my boy. It wasn’t very good, and it made him look like decidedly simian. I frowned, then thought of Picasso: I wrote ‘My child as a monkey’, and signed my name beside it. If in doubt, just change the title and call it art. This is what I am learning this month.

Meanwhile, our three-year-old son has discovered the real secret to art is pretentious titles. We have a display of his work in the kitchen, and they have the following titles: Vanilla Planets, Expanding Planets, Sea Shell in the Distance, Palm Tree in Disguise I, Palm Tree in Disguise II, Cough Medicine (a study in purple), and (my personal favourite) Ghost Fortunate I.

Vanilla Planets – By Master Marlow (age 3)

Novels

  • The Fault in our Stars – John Green. I fear I am about to utter blasphemy: I liked, but didn’t love this book. (I know, I know- you can stone me later.) I don’t really like Young Adult as a genre, so a YA book about two teenagers with cancer didn’t appeal, but then EVERYBODY (and I do mean everybody) was reading it, and tweeting how they were crying at 3am because they were so invested in the characters, so I decided to give it a go. Don’t get me wrong, I can why it was so popular – the sarcasm and challenging of the traditional ‘cancer narrative’ is disarmingly winsome, it has some wonderful lines in, like “I fell in love like you fall asleep: slowly, and then all at once”, and I loved it up to about halfway. But then the plot was a little predictable and the sarcasm started feeling a bit preachy. The plot moves inevitably towards a sad outcome, but the humour continued, and it jarred with me a little. To misquote Ecclesiastes, there is a time for black humour and a time for silence and tears. So I read the whole thing dry-eyed, and though I loved the first half, it left me a little cold. (I am officially the most heartless person in the universe.) I am clearly in the minority, however, so if you like Young Adult as a genre, you’ll probably love this, and it’s pretty cheap. Get it on Amazon.co.uk or Amazon.com
  • The State of Me – Nasim Marie Jafry. I have wanted to read this book for ages – touted as a well-written novel (her writing has been previously shortlisted for 2 prizes) about someone who has ME. The author herself has ME, and I deeply respected her writing wherever I saw it on the internet, but I was worried that it would just be a bit sad to read about someone who has ME and doesn’t get better. (This is also my fear about my memoir, incidentally). I was pleasantly surprised: it was like reading Bridget Jones, if Bridget Jones had moderate/severe ME. Like Bridget Jones, there is a fair amount of swearing and sex, and she manages to notch up an impressive number of sexual encounters considering that she is living with her parents for most of the plot. There is a thread of a love story woven through, which made me keep turning the pages. There were some things that really rang true for me: the ‘conversations with a stranger’ peppered throughout illustrate how difficult it is to explain your illness and describe your life to someone who doesn’t know what it’s like. For example, this:

stranger You don’t look ill.

me That’s good, isn’t it?

stranger You seem to have a lot of energy.

me That’s ‘cos we’re sitting down just talking.

stranger Why can’t you do a job where you can sit down?

me Because it’s not just my legs. If I overdo it my arms feel mashed up and my head shuts down. I can’t think straight.

stranger I see.

me You don’t believe me, do you?

stranger No, not really.

And she captures so well that feeling of the days passing without having done anything useful:

stranger What did you do today?

me I made cheese scones and put a dead bee in the bin.

Some things felt very familiar: my illness kicked off with a virus, like hers, for example, but other things were different to my experience. Her kickstarter virus was Coxsackie virus, mine was Epstein-Barr Virus (mononucleosis); she had developed Irritable Bowel Syndrome as a result of the Cocksackie virus, whereas I don’t have any gastrointestinal symptoms; when I overdo things it’s my legs, heart, breathing and concentration which are most affected, whereas if she overdid things her arms, legs and concentration were affected; the progress of her illness was quite static, and like many people with ME she got a virus and didn’t really get better, whereas my illness has been characterised by dramatic relapses and gradual deterioration. It reminded me of how varied ME can be, and yet the hallmark feature of post-exertional malaise and muscle exhaustion was described so well that it felt instantly recognisable as ME. Her tone is nicely British-sardonic humorous, and I found it to be a highly enjoyable, well-written, and witty journey through the life of an eminently likeable ME patient, written by someone who really understands the illness. Get it on Amazon.co.uk or Amazon.com

  • The Light Between Us – Beth Morey. My dear friend, Beth, who has written on this blog before – twice, has written her first novel. It is billed as a ‘romance’, which scared me, because my thoughts immediately went to Jilly Cooper or 50 Shades of overly-explicitness and badly-written dialogue, but I was relieved that it wasn’t like that. In fact, die-hard romance fans might think there is too little sex in there, but I thought it was right: tastefully tantalising. Perhaps this is romance for non-romance-readers? I really enjoyed the characterisation, and particularly liked the fact that it was a love story where the heroine was both quietly introverted and feisty. Beth writes redemption and forgiveness really well, and I thoroughly enjoyed this light and well-written love story. It’s cheap as an e-book (under £2), and would make excellent beach reading for the summer. (Contains swearing). Get it on Amazon.co.uk or Amazon.com
  • Stoner – John Williams. This forgotten book, written in 1965, the author now dead, was declared to be the ‘book of 2013’ by so many critics and authors that I thought I’d read it to see what the fuss was about. Somewhat ironically, this forgotten novel is about an easily-forgotten and unremarkable man who grew up on a farm and then fell in love with English Literature. I loved this book – it is written so beautifully, as one critic said, ‘like a tailored suit’, and I enjoyed the wry humour and knife-exquisite word-choice on every page. It is the kind of book that you want to read, not so much for the plot, but for the writing and observations. The style reminded me a little of John Steinbeck’s Tortilla Flat – a dry, humorous but unsentimental portrait of American life. And now that I have finished it, it is lingering with me, and I am pondering some of its themes. I love reading books that are not just ‘good stories’ but ‘literature’, and this is definitely literature, of the most enjoyable kind. One of my favourites so far this year. Get it on Amazon.co.uk or Amazon.com

Christian books

  • O Love that will not let me go (Facing death with courageous confidence in God) – ed. Nancy Guthrie. This is a collection of essays, sermons and extracts from a variety of (mainly male) Christian writers over the centuries about the subjects of grief and spiritually preparing for your death. Whenever I have told people that’s what I was reading, I always look interestedly for their response. Usually there’s a silence, and then a comment along the lines of ‘that’s a bit bleak/ what do you want to go thinking about that for? / but you’re not dying’ – all of which reveal, as J I Packer says in the first chapter, that we as a culture are in denial about our mortality, and even within the church, talking about death and preparing for it well is a total taboo. I found it was good for me to read the words of those in previous ages: people like Richard Baxter who was a pastor in the seventeenth century. (I find myself thinking thoughts like, ‘oh, because in the seventeenth century lots of people died’, and then have to correct myself with ‘and of course 100% of people still die today!’) But there is definitely a degree to which the seventeenth century pastors had death and sickness in their faces in a way that we don’t today, and I appreciated learning from their wisdom. And the second chapter, by Michael Horton, on Jesus and Lazarus was astoundingly, beautifully brilliant. A book to dip into while you’re fit and well and not thinking about death. Get it on Amazon.co.uk or Amazon.com

Music

  • Coldplay – Ghost Stories. I loved their previous album as a return to form, but this album is even better. It’s about as perfect as an album gets, with sweet melancholy, and instantly enjoyable. Highly recommended. Get it on Amazon.co.uk or Amazon.com
  • Sarah Bareilles – The Blessed Unrest. I mainly got this for the song Brave, which is a truly amazing Katy Perry-esque song, and makes me want to stand and dance and write and sing, all at the same time. The album has some great songs on it (I like Chasing the Sun and Cassiopea), but it’s reminded me that I can’t really stomach a pop album in one sitting, and at times it feels a little saccharine in its cheeriness. But it’s still worth it, even for those songs that I dip into, and Brave is an epic anthem. Get it on Amazon.co.uk or Amazon.com.

Films and TV

  • Schindler’s List – I watched this for the First Time Ever. Though I’ve heard approximately 50 sermons using the scene with the ring as an illustration, I’d never actually seen the film. It wasn’t as unremittingly bleak as I imagined it to be, and I barely cried (though – see my previous review on The Fault In Our Stars: I may just be heartless). I thought it a beautiful and thoughtful film. Liam Neeson was wonderfully enigmatic and restrained, and Ralph Fiennes shows his acting credentials by achieving the impossible: making a Nazi monster seem human, and at times, even likeable. It’s definitely worth seeing if, like me, you missed it for the past decade.
  • The Holiday – I almost turned this rom com off halfway through, but I was glad I stuck with it, because Jude Law’s character was very likeable and the acting from him and Kate Winslet lifted the whole thing. Enjoyable, a sort of 3/5 movie.
  • I am love – a weird Italian film with subtitles starring Tilda Swinton. Lots of sex in it, in beautiful Italian settings. Very arty. Weird ending. Enjoyed it mostly for the Italian language and beautiful cinematography.
  • World Cup – I actually watched an England game! Even more remarkably, I actually enjoyed the England vs Uruguay game. A good ref with mostly fair play, three exciting goals scored reasonably regularly throughout the ninety minutes – what’s not to like? Admittedly, our team didn’t win, and people have been very harsh on the England team, but really – we’re English, and we live in a rainy climate. Who wants to run around like a lunatic in that heat?

Best of the Blogs – On the spirituality of suffering

Miscellaneous

  • E-Course – The Kingdom of Ordinary Time. I did the Advent Course with writer, theologian and spiritual director Tara Owens, and it was a highlight of my years. This, about seeing God in the ordinary, promises to be just as good.

I also ate strawberries, watched tennis, rested, and went on national radio. June was a pretty full month, all in all (apologies for the length of this blog post!) See you next month- linking with Leigh Kramer. Look out for my guest post on Cara Strickland’s blog on 9th July – it’s a little segment of my love story, and I think you’ll like it.

 Over to you: 

  • What have you been into in June?
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33 Responses to What I’m Into (June 2014)

  1. Cara Strickland 22nd July, 2014 at 11:59 pm #

    I just love this, dear one.
    So much to ponder in here. I feel as though we’ve just had a nice chat.

    • Tanya 13th September, 2014 at 6:25 pm #

      Thanks so much for stopping by and waving hello! Always good to see your face.

  2. Amber Wackford 8th July, 2014 at 7:16 pm #

    “The real secret to art is pretentious titles” – hahaha!

    Confession: I watch The Holiday just to see Jude Law in his coats and sweaters and glasses. They dress him so darn well, I don’t even care what cheesy dialogue is coming out of his mouth.

    Good blog links too, and so helpful that they’re organized so well. I may steal that set up. 🙂

    • Tanya 10th July, 2014 at 12:37 pm #

      Amber! Hurrah! Thanks for visiting me – I really enjoyed seeing your blog. And you are SO right – they dress him very well. He looks all vulnerable-sweet in a thick polo neck in a house in the middle of the English countryside.

      And go right ahead and steal the set-up for my blog link. TBH, I’m just chuffed someone thinks my layout is worth stealing! Score!
      xx

  3. Sue Jackson 8th July, 2014 at 12:09 am #

    Hi, Tanya –

    I’d heard good things about your blog and read this post with great interest. You covered a lot of ground!

    Glad to see you also like books, like me. I have both a ME/CFS blog and a book blog. I was like you – liked but didn’t totally love TFIOS. I think for me, it was just overly hyped – that can ruin a book for me. I still liked it and do want to see the movie.

    I loved The State of ME! I read and reviewed it when it first came out and really enjoyed it – your review was spot on.

    You mention heart and breathing as PEM effects – have you tried various treatments for Orthostatic Intolerance (OI)? Those can help tremendously. Other treatments that have helped my son and I improve and function better over the past 12 years include correcting sleep dysfunction and treating underlying infections, plus treating immune dysfunction.

    I’ll be back! I look forward to getting to know you better –

    Sue

    Live with CFS

    Book By Book

    • Tanya 10th July, 2014 at 12:34 pm #

      Thanks so much for stopping by, Sue! I’m really grateful. I’ve long lurked by your blog, (and been semi-intimidated by how well you know the medical stuff.) I think you were the first person to explain the methylation cycle in a way that I really understood (and I looked at an awful lot of explanations prior to yours…) Having thought about it, I suspect that part of my blank on the methylation cycle is that I hear ‘meth’ and go to ‘crystal meth’ (which is singularly unhelpful, and leads me to a long distraction on crystal meth, which I don’t 100% feel I know anything about…)

      Anyway! lovely to have you stopping by! I’m glad that you agreed with me about TFIOS. You’re probably right – that the main problem is that it has been too hyped. And i’m glad you also enjoyed The State of ME! Interesting you mention OI stuff – I have recently been investigating that angle, having long been convinced I fit the criteria for POTS.

      Thanks so much for saying hi – i’m waving back atcha. x

      • Sue Jackson 11th July, 2014 at 10:01 pm #

        Oh glad to hear you are familiar with my blog, Tanya. No need to be even semi-intimidated. I didn’t understand the methylation stuff the first 100 or so times I read about it either!! It affected my son so severely, though, that I finally forced myself to go through it bit by bit. That article I linked to in the post with the great diagram helped immensely.

        Glad to hear you are looking into OI – over 97% of those with ME/CFS have some form of OI – usually POTS or NMH or both – so it makes sense to look into it. Treatment of OI can help sooo much! Good luck!

        Sue

        • Tanya 13th September, 2014 at 6:24 pm #

          Thanks, Sue! I really appreciate you stopping by. So – just 74 more times reading about the methylation cycle, and I’ll have it cracked, right?? 🙂

  4. Jamie Wright Bagley 7th July, 2014 at 4:06 am #

    I just love you! I’m so happy to have an update. I devour any and all of your words.

    Your observations on art made me laugh out loud. Your son is very creative. What a thing to enjoy!

    I must confess I have not brought myself to read Fault in our Stars yet, mostly because everyone says it will make me cry and I hate crying headaches. 😉 And also because it’s hard to believe all the hype. I’m trying to cure my skepticism, but perhaps it does serve a purpose at times.

    I love your selfie. You are beautiful as ever! <3 Happy July!

    • Tanya 10th July, 2014 at 12:28 pm #

      Hurrah for skepticism! And thank you for saying such lovely and happy things about the boy and me. You’re a honey. 🙂

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