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Ankylosing Spondylitis, Art and Literature, Australia, Observations

To hell and back – a hero’s journey with ankylosing spondylitis

Unfortunately Human by Ryan HaynesWhen a member of Team AS got in touch to say there was a novel going around the ankylosing spondylitis community which was entirely based on the symptoms of this rare and little understood condition, I wasn’t sure I wanted to read it. Here’s my review of Unfortunately Human by Ryan Haynes.

The main player in this extraordinary little book is never named but there’s no doubting its identity. So acutely drawn is the anonymous protagonist that I hesitate to recommend Unfortunately Human by Ryan Haynes to anyone who knows someone with his condition because it will undoubtedly break your heart.

And yet, and yet…if you want to know, if you really want to know the brutal truth of it all, here’s a novel which captures what it’s like to live with ankylosing spondylitis.

Your Girl Reporter was always going to struggle to write an objective review. It’s not just because I have AS. It’s because my uncle Fred, who had it in the same severe form as Haynes, spoke of it to me just once and, apart from that one conversation, never gave any indication that he was in pain. Ever.

So my role model suffered in silence – or more accurately covered his pain with a wicked and unrelenting good humour – and that has made me feel inadequate every time I’ve been unable to do the same. As a consequence, I am hopelessly conflicted about whether it’s a good thing to shine a light in these dark places.

From the blunt opening line, “There is a lock on my neck,” the first part of Unfortunately Human had me in tears as it described, in excruciating detail, every aspect of an AS flare-up.

I don’t know who I was crying for most – for my uncle, whose neck like Haynes’ was completely fused; for the stand-up comedian of the novel, hiding his affliction in plain sight; or for myself, for knowing all too well the truth of what I was reading.

The book is written in journal form and documents the hero’s struggle with the disease which ultimately cruels his comedy career and pitches him into a battle for survival on the mean streets of Los Angeles.

It’s the small details which capture the reality of living with AS more than the big, incontrovertible one of a frozen neck – the coming and going of pain in various joints, the fog of exhaustion, the struggle to pick up a dropped notebook:

First I tried to lean over as far as I could and reach it from here, but I didn’t make it. So I had to push out the chair, then climb down onto my knees, then grab it with my right hand, then push and pull myself back up onto the chair after letting out a little scream of agony… that was quite an ordeal.

There’s just one encounter with the infamous US health system (world’s best, apparently) and it’s notable for the observation that not one of the medical team who attends to his truly terrifying urinary tract infection asks him about his neck.

Like the condition, the character is not named but it’s clearly largely autobiographical. What’s not clear is whether he has had a diagnosis at the time the journal is written.

But in the end that’s irrelevant. This is a hero’s journey in the classical sense as we follow the author down to the depths of hell and back again. Along the way there’s much to appreciate.

Haynes has a writing talent to match the willpower that keeps him fighting when all hope seems lost. There are a few spots which could do with an editor’s hand, but not many.

It’s an honest tale well told, in a voice which is engaging and likeable. I think – and I confess I can’t be sure – but I think that you don’t need to know anything about AS to enjoy it.

There’s certainly more to this book than a depressing catalogue of symptoms. Above all, there’s an insight into the struggles of life on the margins in a society which has no mercy for the unmonied unwell.

And there’s inspiration too. Yes, it’s really hard to exercise when AS has you in its implacable squeezing grip. But if this guy can do it, anyone can. Come on, Team AS: let’s keep moving today.

Unfortunately Human by Ryan Haynes was self-published in September 2014 and is available from Amazon in paperback or e-book form.

Ryan Haynes contributed to the Faces of AS project which documents personal experiences of the condition. He was Face 1413.

© Sally Baxter 2015

Want more Baxter? Try some further Adventures of a Girl Reporter here 

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About Sally Baxter

Once I was a girl reporter. Now I'm an interested observer covering the past, present and future of journalism and whatever else takes my fancy. All views my own.

Discussion

6 thoughts on “To hell and back – a hero’s journey with ankylosing spondylitis

  1. Thank you for bringing this to my attention. I suffer A.S. a hell you can’t explain. Headed to Amazon to get this shortly.

    Like

    Posted by Deb | November 23, 2015, 6:01 am
    • I’ll be getting too. I have AS. Thank you Sally for bringing it to my attention. I’m sorry Sal it’s brought you tears. But for what it’s worth, don’t ever feel you’re less of a person for dealing with your pain in a different way than your uncle. He did well hiding it. But you do just as well by staring it down, writing about it, and facing it head on. And every day you do that, you own it. And you don’t allow it to own you.

      To me that’s a highly admirable and brave way of living with it, if you ask me.

      Like

      Posted by marchmaxima | January 20, 2016, 7:53 pm
  2. Would love to hear what you think of it Deb – do come back and let me know! And keep moving!

    Like

    Posted by Sally Baxter | November 23, 2015, 6:41 am

Trackbacks/Pingbacks

  1. Pingback: Sorting through the wreckage – a year in review | Sally Baxter - December 20, 2015

  2. Pingback: Talking about writing with Ryan Haynes | Sally Baxter - March 9, 2016

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