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Ankylosing Spondylitis, Art and Literature, Observations

Talking about writing with Ryan Haynes

Ryan Haynes is a writer based in California who caused a stir with his first book Unfortunately Human. It’s the story of a young man with an extreme form of a fortunately rare condition called Ankylosing Spondylitis which primarily affects the spine, gradually fusing the vertebrae together into a solid column of bone. Ryan’s spine is completely fused and his description of the minutiae of its effects struck a chord with many readers in the AS community. As someone who also has AS and files the occasional update on the subject, Your Girl Reporter had a couple of questions. 

Ryan Haynes, authorSally: Let’s start with a catch up from the end of the book. What are you up to these days? How’s the neck?

Ryan: My neck is as good as it can be. It’s very strong and as flexible as it can be. My entire spine is fused, as well as my ribcage, it’s all welded together. And of course my skull and jaw are quite stuck.  I’m sure there’s also a lot of fusion around the hips and that whole area.

But my life is better than it’s ever been. I’m in excellent shape and in great health.

I’m working on my next book. It’s a love story with the information of a non-fiction book about health, which I’m sure sounds very strange. But we’ll see if I can pull it off. I have very high aspirations for this one. This book will definitely have more information about AS and the best ways to fight symptoms of all pain and disease. I’m almost finished with it and I’m planning on releasing it this year, in September 2016.

Sally: I was never going to be able to write a thoroughly objective review of Unfortunately Human, so I didn’t try to, but I did say that I thought it would have broader appeal outside the AS community, although I couldn’t be sure. What sort of reaction have you had to the book more generally?

Ryan: Most people that read the book have no idea about AS. They just think it’s some crazy story of something that happened to a guy in LA. And they’re still able to relate to most of it, and really enjoy it.

The book has done extremely well all around the world, considering there’s been no promotion whatsoever. Word of mouth has been keeping it going stronger and stronger and people have even read it and loved it in the Middle East. I’m grateful it seems to affect everyone who reads it, in a very powerfully emotional way, whether they like it or not.

Unfortunately Human by Ryan HaynesSally: I found the section where the character starts his really rather brutal exercise regime pretty terrifying. I was convinced he was going to end up paralysed.

Ryan: You can imagine after reading the book that I’ve worked on my neck quite a bit. I stretch and strengthen it at least twice a day every single day without missing a day.

I’ve done that for the last seven years or so. Surprisingly, I’m in incredible shape. I don’t follow a very good diet, yet there is not one bit of fat on my body, my abs are extremely defined as well as the rest of my body.

So I really have been able to rebuild my body completely out of strong flexible muscle. Of course it’s all from working extremely hard. I stretch so much and workout every single day. I have to stay extremely disciplined.  But I feel very lucky to be able to do so much and have a strong muscular body.

I’m not lifting weights or anything. I do a lot of hanging from things. I’m always hanging from straps and hanging off the bed, stretching and strengthening. I really did build and use that contraption from the book. I still have it, and I still use it every once in a while. I’ve tried a bit of everything.

Sally: You never name AS in the book, or the main character for that matter, but it’s so vividly described there’s no mistaking it for anything else. How closely does your experience with the condition mirror the novel?

Ryan: It did feel like it happened to my neck overnight. I’m sure it was happening gradually, but one day it changed drastically and I woke up and I just couldn’t move it at all.  And it was like it was choking me.

I always had a stiff neck here and there, but it would always loosen up eventually. I still felt pretty normal, then all of a sudden one day it just never moved again.

A lock on the neck is the best way to describe how it feels, and I thought: What better thing for a survival story than somebody trying to break out of a lock?  Like somebody trying to slowly break out of prison.

So I wanted to write the book like that. I really just wanted it to be a story of a deteriorating body, and then trying to fix that body, to rehabilitate and rebuild it, inside and out.

It wasn’t until after the book was out that I realized there were many people with AS and they could relate to it.

Sally: Los Angeles, where the story is set, is one of the few places in the United States I’ve visited. The friend I was staying with remarked one day how quickly he got bored with how gorgeous everyone was. How important was it to have the story set in Los Angeles?

Ryan: I felt my surroundings were perfect for a story like Unfortunately Human. It was an interesting thing to have a body deteriorating or failing, right in the middle of Hollywood and Beverly Hills where so much importance is put on the appearance and the body.

So that’s why there was so much focus on the body, other people’s bodies… There’s a lot about ageing and looking older while young, which is something we go through with AS, young people moving like senior citizens, or always trying not to look like senior citizens.

I wanted the narrator to be young and already struggling with the issue of age and appearing old. That’s why the girl’s age in the story was important.  He’s pursuing a younger woman and already afraid of appearing too old. So yeah, it was perfect for LA.

Sally: Another thing that struck me about the book was the constant little lies the narrator tells about what’s wrong with his neck, and the efforts he goes to in trying to hide the condition. I did that too for a long time. It’s easier, for a start, to just say you have a bad back or a dodgy hip than to try and explain that it’s some weird thing that no-one’s ever heard of. But it’s also embarrassing. Given you have obviously experienced that too, was it hard to write about it?

Ryan: I learned early on to be brutally honest when I write, and to hold nothing back. I think it’s just how writing always was for me, this release where I could say absolutely anything I wanted.

And I barely say anything in real life, I don’t talk about anything serious when I do speak. So when I sit down to write, I just pour it all out.

I’m not comfortable talking about any of this with anybody, by the way, I don’t talk about any of it with anybody, even family, but I am actually comfortable speaking about any of it with somebody that has AS.

Anyone who is familiar with AS will gasp at this picture of Ryan and what he's managed to achieve in spite of chronic pain and exhaustion. While the results are amazing, don’t try Ryan’s method at home kids, assuming you can find the energy. If you do have AS the best thing you can do for yourself is keep moving. There are some good resources available online – one of my favourites is the National Ankylosing Spondylitis in the UK that can help you navigate the illness and the health professionals who can help you.

Anyone who is familiar with AS will gasp at this picture of Ryan and what he’s managed to achieve in spite of chronic pain and exhaustion.
While the results are amazing, don’t try Ryan’s method at home kids, assuming you can find the energy. If you do have AS the best thing you can do for yourself is to keep moving. There are some good resources available online – one of my favourites is the National Ankylosing Spondylitis Society in the UK that can give you some advice on how to navigate the illness and the health professionals who can help you.

But yeah I think we all learn to hide it when somebody asks.  I usually just say, “I’m a bit stiff.”  And if they really want to know what happened I’ll say: “Got in an accident.”  I’ve learned to say whatever will end the conversation the fastest.

Sally: The reactions I’ve seen – and my own reaction as someone with AS – have been quite profound. Have you been surprised at how the book’s been received?

Ryan: Yeah it’s been amazing that people with AS from all over the world have contacted me and thanked me for writing the book, telling me it’s really inspiring and how much they can relate. It really blows me away. It keeps happening.

I never set out to be a spokesman for AS or anything. I never really intended to write a book about AS or bring awareness to the disease at all. I just wanted to write the best book.

One thing I want to make clear is that Unfortunately Human isn’t the diary of Ryan Haynes. It’s a fictional story, a literary novel.

Just as you understood, it’s a classic survival story. I saw it as an homage to the classic books I loved with the nameless narrator trying to survive in the big city. I purposely didn’t want the reader to know everything. I wanted the reader to feel just as the narrator did, where he didn’t know what was going on. I wanted it to be like a found journal, written in a rough, messy way.

Even though I’ve experienced all of it in some way, I still constructed everything so it would fit into the particular story I was trying to tell. But the book is very embarrassing for me at times, especially as most people believe it’s my autobiography. It’s not a flattering portrayal, it’s definitely rough, ugly subject matter.

I never thought I would ever meet somebody with my same condition, never in a million years did I think that would happen.

It felt like such a rare strange thing that happened to me, I thought it had never happened in the history of mankind. But it was after I completed the final draft of Unfortunately Human that I met other people from all over the world online that had similar stories.

It wasn’t until after it was out that I realised that there were so many people with AS and they could relate to it. And I was surprised how therapeutic it was for me to meet others with AS.

Sally: I’ve written the very occasional blog post about my experience with AS and, like you I think, I’ve been surprised by the warmth of the reaction I’ve received. While this conversation has been about the writing of your novel, I’d like to come back in a future post and talk more about our individual experiences with the condition. Whadderyareckon?

Ryan: You should be careful what you ask for. I have a lot more to tell you as well as ask you.

This is just a fraction of the discussion I’ve had with Ryan to date so stay tuned, Team AS – he’ll definitely be back in a future post. In the meantime, gotta keep moving!

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.

To hell and back – a hero’s journey with ankylosing spondylitis – Ryan Haynes’ Unfortunately Human reviewed by Your Girl Reporter, natch.

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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

One thought on “Talking about writing with Ryan Haynes

  1. Reblogged this on Window With A View and commented:
    Chronic pain and fatigue, the invisible pain with visible debility, definitely a must read novel, “Unfortunately Human” by Ryan Haynes. Thank you Ms. Sally have a lovely stress free week all through the year 😀

    Liked by 1 person

    Posted by Kreng Jai | March 7, 2016, 4:18 pm

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