
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
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.
- Addie Zierman series- The Non-Bloggers Guide to Blogging – including this humongous list of resources.
- Everyone’s talking about scarcity! Abby Norman has her scarcity hunters email list (which I look forward to each week), and Sarah Bessey wrote for The Higher Calling on scarcity. (See their whole series on scarcity here). She pointed me to this excellent article by Walter Brueggeman, explaining the concept of ‘scarcity’, and tracing the themes of scarcity and abundance in the Bible. It’s lovely. The liturgy of abundance, the myth of scarcity – Walter Brueggeman
- Jon’s blog posts on art. If it’s just a print, is it still art? – The Limits of Limited editions and Art for Under 5s – Turner and the Sea (including original artwork by a certain Master Marlow.)
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?
Oh, my goodness, I love the titles of your boys art!
I’ve just read The Fault in our Stars too, far the same reason as you, and I have to say: Thank you! You perfectly articulated how I felt about it. The beginning was very enjoyable, but then I just got a bit bored and didn’t manage to become very invested in the characters. (I didn’t cry either.)
I really, really must read The State of Me, it sounds very interesting! Plus, I love British humour.
I’m so happy you’ve been feeling more energetic!
YES!! I’m so gratified that I’m not the only one who thinks that way about The Fault in our Stars. (Maybe it’s just those who are housebound with ME who have this reaction??) High-five for not crying!
Thanks for stopping by – how are you doing, lovely lady?
Perhaps not crying when reading that book is a new diagnostic criteria 😉
I’m recovering from a nasty cold that took a lot out of me, thank you for asking! I hope you still have more energy!
New diagnostic criteria! That cracks me up! Praying you regain all that energy.
Hi Tanya, Thanks so much for your lovely review, I can imagine how much it takes out of you to write such a long post, but I know you will have been editing it for weeks, and saving in draft and going back! I also enjoyed your reviews of the other books, you have a very engaging style.
I should mention: my novel is not prize-winning, but thank you for saying so, but you might want to edit that wee detail!
Yes, when Helen Fleet, my main character, overdoes it, she has the classic post-exertional neuro symptoms, as you have written in your post. Personally, I also get the racing heart but I possibly did not give this experience to Helen, I can’t recall now!
I obviously did not include every single ME symptom of my own in my fictionalisation – would be impossible! – and Helen’s story spams 15 years, whereas my own is, sadly, 30.
Am glad you were pleasantly surprised that the novel is not downbeat: I basically wanted to get the absolute hell of the illness across, especially in the severe phase(s), in a quirky way that was not self-pitying.
I loved reading about your wee boy’s art and your drawing of him, just gorgeous.
And I must read Stoner now!
Take care, and thank you again for your review. Good luck with your own writing. X
*spans, not spams
First – thank you so much for stopping by, I really appreciate it. Second, I am SO sorry for all the errors in my review. I’ve edited it now so it’s correct (hopefully!) – that you are a prize-winning author rather than the book itself being prize-winning (though it blatantly should have won some sort of prize…!) Yes, it would have been impossible to give all the ME symptoms in one characterisation – I don’t think most people realise just how many symptoms can accompany ME.
Thanks for your kind comments on our art (I love the way you say ‘wee boy’!) Hope you enjoy Stoner!
Tanya, so much good stuff in here. I enjoyed your radio performance, it really threw light on living with chronic illness and enforced solitude. And I’m with you on The Holiday too. Great fun and as someone else said, a true guilty pleasure. It’s Jack Black’s character I really enjoy. I’ve just met Addie Ziermans’s blogging series and feel like I need to go back to basics and think a lot about what I’m doing with my blog. And finding something like that- useful, accessible and not condescending is so lovely. This is a great post – full of interesting links and giving your own opinion of things. Thank you – its been a real pleasure to read.
Thanks so much for taking the time to comment so thoughtfully. I’m really grateful to you for listening to my Radio 4 spot, and I’m so glad that you found Addie’s series so helpful. You’re spot on – she’s not at all condescending, and that’s rare in the ‘how to’ genre of things. (She is brilliant in many ways…) Thanks for stopping by!
“…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…”
Wow. I really love this. Pondering.
Also, I love your boy’s art. Like, really. I thought it was going to be labeled as a pastel sketch in a museum or something.
Beth, you always say the best things! I have also been pondering greatly that thought – i have found it to be really freeing.
And i am SO CHUFFED that you thought the boy’s art might have been in a museum etc. Either that says that my son is a budding genius, or that modern art really could have been done by a child. One of those, definitely…
Let’s go with genius. 🙂
Let’s!
I can’t believe you’ve not seen Schindler’s List before. One of my most admired films of all time (favourite doesn’t seem an appropriate word). As a follow-up, I would recommend having a read of Elie Wiesel’s ‘Night’ if you’ve not read it already. It’s an eyewitness account of the Holocaust with some simply stated but profound theological reflections.
I’ve often heard of that book but not read it. I view your recommendations highly: will have to bump it up the queue!
Great blog, Tanya – really enjoyed reading it!
The Holiday is a bit of a guilty pleasure for me – I’ve watched it 4 or 5 times because it’s on ITV2 a lot. The plot is really stupid and contrived, even for a romcom, but there’s something really pleasing about the performances, and I’m always really cheering for Kate Winslett’s character to see through her handsome but horrible boyfriend and move on!
Thanks for stopping by, Pam! I totally agree that there’s something pleasing about the performances. And yes – Kate Winslet at the beginning is so excruciatingly wrongly-in-love that it’s great to see her move on! (Hmmm… ITV2 – *takes mental note*)
Tanya,
Very nice picture. I am thankful that you have more energy. I read a new James Bond book called Carte Blanche by Deaver. I enjoyed it. I also ran my first half marathon last weekend. I did not run as well as I liked but I enjoyed the 4 months of running getting ready for it.
Master Marlow has a nice ring to it. 🙂
WOO HOO!!! You ran a half-marathon! (I love how you call it your ‘first’, as though there are going to be more. Will there be more? I think that’s amazing.). “Master Marlow” sounds kinda Dickensian, doesn’t it? He does look like a little Dickensian urchin at times, so that’s kinda fitting. Thanks for stopping by, as ever.
So excited to see a post from you today. I’ve been wondering how you are! (Did that lead me to actually write the email that I was considering writing to ask you? Well, no it didn’t. But I’m going to go ahead and claim credit for thinking of doing it…)
1. LOVE the boy’s art titles. Really. More art should have pretentious titles. Instead of Boy with Rock they need more Vanilla Planets. Which is a lovely piece, by the way.
2. I think your fear about your memoir being “just be a bit sad to read about someone who has ME and doesn’t get better” is completely reasonable. Mostly because of what you said about O Love That Will Not Let Me Go. I think we don’t want to face our own morality. It reminded me of a post I wrote on my friend, Karen’s, blog once because I struggle with this idea of focusing on a story that is just mainly sad when I make the memorial necklaces I make.
http://kbkubin.blogspot.com/2012/07/my-life-my-art-janice.html
I often have to remind myself that contrary to cultural ideals, sadness is very much a part of our humanity. Even though I sort of hate that it is.
3. Thanks for the long post!
Lovely Janice! I always love to hear from you. You can definitely take credit for an unsent email, I reckon. And i’m really glad you like the boy’s pretentious art titles. I like to tell myself it’s because he has poetry in his blood. And thank you so much for speaking into my fears about bumming everyone out with my story. I read your post and OH! – you made me cry, and yet I was also grateful for it. Sometimes sadness can be cleansing, beautiful, wholesome somehow. Aristotle and catharsis and all that. Sadness is a part of our humanity – yes. And so it is truth. (This is all making me think that one day I should write a post in defence of sadness…)
and thanks for validating my verbosity by saying you enjoyed the long post! 🙂 xx
Oh, you should DEFINITELY write a post in defense of sadness. That makes me think of how often I resist feeling my own sadness about something and how it just causes all sorts of negative emotions to gather up and spill out in unexpected places. You are right, it is truth, and there are times that it is right to be sad.
And I’m always in for long posts. It’s a source of minor embarrassment to me that I almost always have the longest comments. I just can’t keep things short. How are other people are so succinct? So yay for verbosity!
I LOVE your long comments! Seriously. And thank you for affirming and encouraging my writing intuitions – it really helps!