What I’m Into – May June 2016

Those who follow me on social media will know that I’ve been trying to finish this ‘What I’m Into May’ post for about a month, but have been unsuccessful. So I cut my losses and I’ve combined it into two months. Efficient!!

And WHAT a two-months it’s been for Britain’s politics: Waving a flag for Queen Elizabeth II’s 90th birthday, meandering along, moaning about all this fuss about the EU Referendum and how boring it all is, THEN – the vote looks like it’s really close; MP Jo Cox is murdered; Britain votes to leave the EU, to the utter bafflement of half of Britain and pretty much the entire rest of the world; BRITAIN’S POLITICS IMPLODE. (For a sweary but brilliant guide that explains the full situation more simply – check out This Completely Bats*** Week in British Politics, Explained for Americans – Buzzfeed)

Which roughly brings us to today.

However – here in my world, things have been less dramatic. March and April were virus plus relapse; May and June were feeling a bit more like my ‘normal’, though I’m not quite there yet. Here’s a little run-down of what I’ve been up to.

(NB Looking for my usual book reviews? Because this was a bumper edition of ‘What I’m Into’, I’ll instead be publishing separately a round-up of my May and June books, together with more recommendations for your summer reading. Look out for it in a few days’ time!)

*** ALSO – Look out for my chapter in Soul Bare, which will be here by August 2016. It’s 20% off directly from IVP (US only), or get it from Amazon.com, Amazon.co.uk, or Wordery.com (UK).***

In May-

• I began, with fits and starts, to recover from the relapse that had started with a virus back at the start of March. I got to celebrate my birthday, two months late. It was such a joy to leave the house and do a fun thing.

Out for (late) birthday meal, May 2016

• We had at least five days of sunshine (at least in the South West). In Britain, we call that ’summer’. Being ill is so much more fun lying out for a bit in the sun rather than being in a dark room.
• We went for some fish and chips by the sea! My favourite thing to do. And my favourite place is Looe. (That rhymes).

By the sea in Looe

In June-

• Our boy was baptised! It was a precious weekend, with family and friends uniting to witness the boy making promises to follow God. Jon got to baptise him in the sea. It was pretty special. Plus – I survived all the excitement! Without too much ME payback! Woo hoo!

After the baptism

• I got a hair cut! With my two trips out of the house per month, I always have to weigh up ‘useful v fun’, but getting your hair cut is a little of both, isn’t it? It was quite overdue. I took advantage of it and took lots of photos of me looking beautiful. Then two days later I washed my hair and looked back to normal again. Such are the unalterable laws of the haircut.

NEW HAIR!

TV 

• Moneyball – surprisingly compelling film about a failed baseball player (Brad Pitt) who uses statistics to change the way that players are scouted and traded, building a supposedly-misfit team against the counsel of all his advisors. Thoroughly enjoyable.
• The Night Manager – breathtakingly good, beautifully-shot, intelligent, spy-type thriller. Hugh Laurie, Olivia Coleman, Tom Hiddleston, Elizabeth Debicki all on top form. Watch this if you possibly can.
• Eurovision Song Contest 2016– highlight was the spoof song – Måns Zelmerlöw and Petra Mede – Love Love Peace Peace
• Kimmy Schmidt Season 2 – The episode with Tina Fey as a drunk lady is AWESOME. Favourite quote – “Don’t let me be deported. I can’t got back to Vietnam. It’s full of baby boomers trying to feel something.”
• Britain’s Got Talent – but does it? really? a card trick to win the prize??
• Good Wife Season 7 – I’m stalling on this a bit – disappointed in this series.
• Once Upon a Time – the season finale for the first season was IMMENSE. Loved this series. Not sure about the first episode of the second one, though – is it still good?
• Songs of Praise – Pentecost edition. Great to see my friend, ‘first online pastor’ Ros Clarke interviewed, hear Sister Catherine Wybourne’s voice for the first time, and watch my friend Vicky Beeching presenting part of it!
• White Collar – classic set up – the white collar fraudster who’s let out of jail to help them catch a bigger criminal. Has two good leads, but I wish it had a few more central female characters.
• French Open tennis – Murray was a well-deserving runner-up, but nothing seems to stop Djokovic right now
• Episodes – Matt LeBlanc is fully hilarious in this – I’ve just started this program, and I’m enjoying this deeply sardonic (and slightly crude) series about two British writers who are trying to produce a series in the US.
• Musketeers – the final Swashbuckles!

(On Netflix now – Gilmore Girls! All 7 series. And American Odyssey – well worth watching: it’s compelling and brilliant).

May was all about #MillionsMissing – the campaign for better ME research

For the first time, #MEAction (and Change for ME – the people behind my mini documentary on ME) organised a worldwide protest about the lack of funding for research into ME. (In the US, the NIH give more money to research male pattern baldness than they do for ME) Their genius idea was to include people too ill to protest, by having a ‘virtual’ protest where you could send in your shoes as a sign of one of the ‘millions missing’.

Sarah Reed gave a summary (with photographs) of the London protest. Members of Parliament Hillary Benn and Yvette Cooper stopped to find out more – blessings upon them!

Sarah Reed and Hilary Benn at the London protest. Photo credit: Sarah Reed

The Press pretty much ignored it, but we did get this in the Evening Standard – Global ME Protest 

This 6 min well-produced video featuring highlights of the Seattle protest and people’s stories was incredibly moving. Well worth your time:  #MillionsMissing Seattle (May 25 2016) 

ME Deaths

In June, I was shocked to hear that severe ME patient and activist Jodi Bassett had died. She was just 40. She had mild/moderate ME, but was told by her doctor to exercise more and because of that she ended up with very severe ME.

Painstakingly, over almost ten years, she used the tiny energy windows she had to write one of the greatest ME resources in the world, The Hummingbirds’ Foundation for M.E. website and associated books, that correct a lot of the misinformation out there. Her site was an enormous help to me when I was mystified as to why exercise was making me worse, not better. As I understand it, she contracted breast cancer, but her body was so weakened by ME that she wouldn’t have survived chemotherapy or surgery, so there were no treatment options available to her. The cause of death will be recorded as breast cancer, but she died of ME. 

She was a talented fine artist, a fighter for truth, fiercely intelligent. I am deeply indebted to her and her work, and gutted that she is gone.

In addition to Jodi’s death, in June, other ME patients who had a presence online also died: Louise Ramage, Pat Blankenship, Tink Bastion, Sarah Ellis, Pam Carmichael, Linda Hays Burke. Cause of death? Either directly from complications of ME (including cardiovascular issues), secondarily because of their body being too wrecked by ME to undergo surgery/chemo/radiation therapy, or suicide – because living in pain in a darkened room for decades without medical help takes its toll.

Please consider signing this petition for better funding into biomedical research for ME. The small amount of money for ME research is being squandered on psychiatric studies, which are poorly designed and result in NICE (UK) advocating Graded Exercise therapies that ultimately harm ME patients. We badly need some research. Sign petition here (UK residents only)

Music

• Sia – This Is Acting – her latest album is really good.
• Tori Amos – Unrepentant Geraldines – this feels like the most similar album to her Silent All These Years phase – chilled and reflective.
• Regina Spektor – ALL HER ALBUMS. I love Regina Spektor so much.
• Mika – No Place in Heaven – it’s good, but perhaps not great.
• Christine and the Queens – Chaleur Humaine – everyone was recommending this after seeing it on TV – strangely hypnotic dance and comforting chill-out vibe from this French singer (who sings in English with an excellently strong French accent). Love the whole album – the perfect album to write to. LOVE this video of them performing on Jules Holland – the dancing is quirky and hypnotic

This led me to..

• Brigitte – Et tu, vous m’aimes? – quirky and whimsical entirely French album. No idea what the lyrics are, which isn’t a problem for most of the songs, but I’m pretty confident that ‘Jesus Sex Symbol’ would not go down well at the church tea party.

The light on the sea in Looe. Doesn’t it look pretty?

On the Internet

(Bear with me here – there’s a lot, because 1. it’s two months’ worth and 2. the world went MAD in June – but it’s helpfully grouped under headings so you can explore the ones most relevant to you). 

Helpful articles on suffering:

• I’m new to Shane Clifton’s work, but his website is well worth checking out. Two things here 1) brilliant video telling his story of becoming a quadriplegic and hope after life-altering injury and 2) a great theological reflection on God and the problem of pain – The Problem of Pain is Personal for Shane 

• Helpful approach when faced with tragedy – Tiffany Thomas – Preaching in the midst of tragedy 

• The brilliant Tammy Permutter at The Mudroom – Suffering Is Not for Its Own Sake

• “I strain my heart/ I stretch my hands / And catch at hope.” Beautiful quotes, collated painstakingly (literally – Jenny has very severe ME and vEDS, so it hurts her even to tap on an iPhone). Balm if you’re feeling fearful or low: Jenny Rowbory – Words that Help Me 

Helpful on Chronic Illness:

• I kind of want everyone in the world to see this – my amazing friend Jenny Rowbory tells of life with very severe ME and vEDS- All the things that you never wanted to know about my life with an acute chronic illness

• True and gentle – Eva Hagberg on How to love your body when chronic illness makes you sedentary

• This is GENIUS – A comic by @lauras_pen showing how ME patients can look well one minute but pay for it later

• I guess I would be c.70-80 on here, but my concentration is good – The ME Association Disability Rating Scale, 2016

• Brilliant presentation on M.E. by Kati Debelic to her MP – and she gives permission for people to use her slides, to amend them, delete and add as desired for your MP or other presentation. Tom Kindlon turned the slides into a PDF that can be downloaded here. Presentation to MP about the need for better research and treatment for M.E.

On Orlando Shooting:

• This is so beautiful – and so much wisdom here from Esther Emery: Brotherhood of Brokenness (Orlando shooting)

• “Mourn with us, and don’t qualify your lament” – Matthew Vines – How Christians should respond to Orlando massacre

On the controversy of JoJo Moyes’ Me Before You:

• Relevant Magazine – Why the message of Me Before You is so dangerous (and not romantic at all)

• Shane Clifton again – a straight-talking Australian quadriplegic explains why this book is so offensive – Why I Hate Me Before You 

Disability News:

• How the government invests in injustice –
  Step 1: government denies benefits to disabled people, even though they qualify for them legally. Disabled people appeal, and win at tribunal, so:
  Step 2: government cuts legal aid for appeals so it makes it harder to overturn unjust decisions. Disabled people keep winning at appeal so…
  Step 3: government spends millions employing new legal representatives to support the DWP at tribunal so that fewer disabled people will win
  See: Guardian – The Government is Skewing Benefits Appeals Against Disabled People 

• 2 in 5 disabled people sent to assessment centres with no disabled access. And worse… Frances Ryan for the Guardian – PIP (disabled benefits) is a MESS.

• Why are the DWP allowed to break their own rules? Frances Ryan – Sarah, paraplegic, hounded by the DWP 

Disability resources: 

• Counselling Anywhere – online therapy – 5 Ways OnlineTherapy Can Make Counselling More Accessible to Disabled People

• Love this 6 min video by Cathy Madavan and her husband Mark about what marriage (and love) looks like when one partner has a disability 

• Really good both on faith and disability –  Comedy actress Sally Phillips for Premier Christianity Magazine – How I became a Christian 

ME Research and Science News:

• Interested in scandals within the world of science? The scandal of the controversial PACE trial (which skewed its data so it would look like Graded Exercise Therapy would help M.E.) grows ever more outrageous. They refused to release the data because they said they would have to pay a statistician to make it anonymised – yet they happily spent £250,000 on legal fees to stop their data being shared: Using public money to keep publicly funded data from the public 

• Could a simple app help you with pacing? Measuring your ME ‘crash’/relapse on a graph- How HRV testing can help you monitor and pace well

• Hope this research is replicated – ME/CFS is in your gut, not your head | Neuroscientist News
• Find out the latest ME Research – Good summary of the recent Invest in ME conference
• ME vs CFS criteria; Fukuda vs ICC – fascinating study showing the potential over-diagnosis of ‘Chronic Fatigue Syndrome’ and the different patient groups of ME vs CFS – summary of the research
• PACE authors’ rejection of data requests makes it “look as if they are hiding something” – Former BMJ editor weighs in on PACE Trial  
• Report says it’s evidence of disease, not a behavioural disorder – Altered neuroendocrine control and association to clinical symptoms in adolescent ME/CFS
• ME Research Spring 2016 Breakthrough magazine now available free online

On Politics:

• (Brexit aftermath) Aditya Chakrabortty – After a campaign scarred by bigotry, it’s become OK to be racist in Britain 

• Debbie Abrahams (Shadow Minister for Disabled People) – “What does the EU Referendum mean for disabled people?”  (clue: it’s not good…)

• Wise words on the EU by J K Rowling  – Monsters, villains and the EU referendum

• Hard but important reading – a woman raped by Brock Turner exposes the injustice in the system 

• On the Brock Turner rape case and racism – I’m a public defender. What if my clients got the same treatment as Brock Turner? 

• Hoping the US will reconsider its laws – The state of gun violence in the US, explained in 18 charts

Mmmm, fish and chips. Feeling hungry?

Happy stuff and miscellany:

• My new favourite Mummy-blog – Sass mouth and sour milk 

• Best news story ever: Dr Heimlich performs the Heimlich manoeuvre for the first time, aged 96 – and saves a woman’s life

• Love this post – and not just because it stars two lovely friends. So interesting on different ways of doing community – and how married people and single people need each other. Micha Boyett – You, Me and Leigh

• Relevant Magazine – Could a New App Help End Human Trafficking? 

• Another reason to love him! – John Oliver buys and wipes out $15m of American medical debt 

• When your identity has always been in one thing, but life changes the story for you – Sarah Bessey – Off-Brand 

• Don’t miss this fascinating TEDx talk by Esther Emery on her year without internet, off-grid living and silence 

• As we celebrated astronaut Tim Peake returning home – some cool Space Travel Superstitions and Traditions 

• I feature here! Most popular 30 seconds or less videos 

• Utterly compelling – Garip Ay recreates Van Gogh’s masterpiece – on dark water

For cool-map-lovers:

• Map 1 – mapping ancient tribes onto current Britain
  “This is most strikingly seen in the genetic split between people living in modern Cornwall and Devon where the division lies exactly along the county border along the River Tamar; the people living on either side of the river have different DNA.”
  There’s a joke in Devon that you need a passport to get to Cornwall, because it’s a foreign country. These maps indicate there may yet be something in that….
• Map 2 – map showing deprivation and poverty levels of Church of England parishes
  This is a fascinating map. Two thoughts – 1) we talk about the north/south divide, but it’s striking the divide between Southeast (mainly wealthy but with pockets of deprivation) and the Southwest (almost entirely poor).
  2) We talk about inner-city poverty a lot, but the Southwest areas show another side – the rural poor.
  If you’re a vicar looking to do some good in a needy parish, perhaps consider rural ministry – and don’t forget the Southwest.

Useful:

• “Exploring your problems on paper helps you transcend them.” Sheridan Voysey – The 7 Benefits of Journalling
• Book reviews by kids, for kids – James Street Review

Most popular on my blog:

Catch up with what you’ve missed!

• “Sometimes I dream I am running again.” I wrote about Why I’m  Giving Up My Trainers for the #MillionsMissing protest – and the post was shared more than 150 times on Twitter.

• “I want to say it loudly: the claim that you will always feel God’s peace during suffering is a myth. “ My post on God’s presence (or lack of) during suffering for Katharine Welby Roberts really seemed to hit a nerve – When God is Silent 

• “My proposal was rejected. But it felt like I was rejected. ” This piece got picked up by a Christian dating site, too! My post for The Mudroom – The Curious Blessing of Rejection

• “You don’t have to catch up. This is just Winter. Spring will come. You’re doing just fine.” I wrote about being in the in-between, and it ended up being on She Loves Magazine‘s 10 most popular posts ever for about a month: When You’re Stuck on Pause

• “Our character is revealed not in how we treat our friends, but our enemies.” Not just about Brexit – this is a challenge to all of us to check our hearts when it comes to politics. The Politics of Hatred 

Phew! You did it! Thanks for walking with me through the myriad events and articles of May/June 2016.

Over to you: 

• What were you into in May-June 2016? Has your life been dramatic like British politics or – not so much?

I’m linking up with Leigh Kramer for her magnificent What I’m Into Linkup.

This post contains Amazon and Wordery affiliate links, which means if you click through to Amazon.co.uk  Wordery.com or Amazon.com from this site and buy absolutely anything in the world, you help this site, at no extra cost to you. I received a free advanced copy of some of the books above in exchange for my honest review, which these all are.