Ten Years of severe Myalgic Encephalomyelitis – #tenforjen

Jenny Rowbory, in 2008

Who is your hero? Jenny Rowbory is mine.

This is a special blog post to mark ten years of my friend Jenny Rowbory being bedbound with severe M.E. In 2004, she had 4 As at A Level, (including the joint highest score in the country for one of them), and was at university, studying Medicine. She loved athletics, and was an accomplished sportswoman, and one of those people who is amazingly multitalented, whatever they turn their hand to. Then she got a virus in the first term of university – which became M.E.

Like M.S., there seems to be a relapsing/remitting version of ME (which I have), and a constant deterioration (which she has). When I first got to know her I found it hard to imagine how her illness could become any worse: she lives in a room alone, in constant pain, unable to speak, paralysed, unable to tolerate light or noise. Since I have known her over the past three years, she has become even worse, and each day she battles to stay alive. Twitter, her only communication with the world, has become increasingly sporadic as she is too ill even to jab out letters on an iPhone.

Many people have written recently about how Ebola is a terribly inhuman disease, because you cannot touch the person who is dying. I thought to myself, “I know another illness like that”. Very severe ME is one of the most isolating illnesses I can think of. Jenny cannot be touched without her acute symptoms becoming even more agonising, and even having someone in her room for a few minutes causes her agonising pain and worsening heart symptoms. She suffers from insomnia as part of the illness, so there is very little relief. She has no help from NHS doctors.

Today, 1 December 2014, she has been in this situation for ten years.

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She is my hero, because, like Job, she endures. We admire those who climb mountains and endure freezing temperatures, and history applauds them. But where are the records and awards for those who climb mountains of pain and isolation, day after day, for decades? Every day that she breathes and eats is a testimony to her feisty and determined spirit, her colossal inner strength.

I want to stand with her, mourn with her all the losses. I also want to celebrate the person she is, and all that she has achieved despite such a crippling and tormenting illness.

She is a person. She loves Gilmore Girls (which shows her good taste), and Star Trek (which she is to be forgiven for…), and B:witched (a presumed teenage indiscretion), and Adrian Plass books (which are GENIUS), and Harry Potter, and all good poetry.

Jenny is an accomplished poet, who happens to be one of my favourites of all time. If you love poetry, you should stop reading immediately and go and buy her volume, Rainbows in My Eyes It is incredible, beautiful stuff.

Jenny is marking ten years of being ill, and wants to do something constructive. She would dearly love to raise £10,000 for ME Research (which, I can tell you, is much-needed, because the government donate so little to biomedical research into ME). She is doing this by ‘Pounds for Poems’. It has taken her five years to painstakingly (and there is literally pain with every small effort) tap out her poems onto an iPhone – and they are incredible. My favourite is Gethsemane.

I want to mark this day and honour her, because she is my friend, and my hero, and because every breath she takes and every moment she endures is honouring to God. I’d love it if you could join me in this.

SO – here’s what you can do.

1. 1.  Go NOW to her page, read her exquisite poetry, and consider giving to ME Research using the link at the bottom of her page or this one here. I’m hoping that ten people might give £10, to mark her ten years of M.E. I know it’s Christmas soon, and pants timing, but I’m hoping that instead of Cyber Monday, this can be Jenny Monday, just this once. If you can only give £5, give £5. If you can give more, give more.

1.  Play #tenforjen. (It will probably annoy her no end that I’ve called her Jen, not Jenny, but it scanned better than #tennyforjenny…) Jenny Rowbory is the queen of lists of fun things, so I’ve created a list of my own. The rules are this: tweet her using her Twitter handle @stroopwaffle and the hashtag #tenforjen, or comment below with your answers to the following favourite thing questions:

Over to you:
Answer these #tenforjen questions (based on some of her favourite things)

1. Who’s your favourite Friends character?
2. Who’s your favourite Harry Potter character?
3. Who’s your favourite Gilmore Girls character?
4. What’s your favourite kids’ Christian/praise song?
5. What’s your favourite Olympic discipline?
6. What’s your favourite sport?
7. What’s your favourite animated film?
8. What’s your favourite romantic comedy?
9. What’s your favourite song from the 90s?
10. What’s your favourite childhood toy?

Thank you. She is very unlikely to be well enough to reply to your lists and tweets, but I’m hoping she’ll enjoy reading them. 

Tweetables:
[tweetit]”Who is your hero? Jenny Rowbory is mine.” Honouring the incredible @stroopwaffle today – read why:[/tweetit]

[tweetit]She is my hero, because, like Job, she endures. – @Tanya_Marlow on @stroopwaffle, and chronic illness:[/tweetit]

[tweetit]Today I’m playing tenforjen, honouring @stroopwaffle. Here’s how you can play too:[/tweetit]

[tweetit]”I’m hoping that ten people might give £10, to mark her ten years of M.E.”[/tweetit]

Go to Jenny’s page, read her poetry, and consider giving.