Creators Dealing with Chronic Illness – R. J. Keller

Please tell me a little bit about you.  What’s your name, what do you write, basic bio stuff?

I am R.J. Keller, from the boonies of Maine. I’m the author of Waiting For Spring, which was originally self-published but recently picked up by Amazon Encore (re-release date May 11, 2011). I write rather gritty contemporary fiction.

How old were you when you wrote your first book?

I began writing it in March of 2006, when I was thirty-five. I finished in mid-2007 at age thirty-six.

Why did you wait until after you were 30 to write?

Honestly, it’s because before then I was busy with living. I was married (still am, in fact) and had two young children (who are now teenagers). I volunteered at their school, I worked full time, was active in my community. I’ve been writing stories and poetry since I was old enough to hold a pencil, and I’d always wanted to write a novel, but it seemed like such a Herculean task. Then, when I was thirty-two or so, I got sick. I came down with a bad flu and just never quite shook it. Eventually I became so sick I had to stop working.

What is the challenge you deal with?

I suffer from hemochromatosis, a disorder in which the body absorbs extra amounts of iron from the daily diet. The human body cannot rid itself of the extra iron, so over time these excesses build up in major organs such as the heart, liver, pancreas, joints and pituitary gland. If the extra iron is not removed, these organs can become diseased.

How were you diagnosed?

I began feeling the symptoms – chronic fatigue, joint pain, migraines, compromised immune system – in 2003, but wasn’t diagnosed until late 2006. The symptoms can fit a wide variety of disorders, and hemochromatosis is typically thought to present with men in their fifties, which is why it took so long for me to get diagnosed. By that time, I was feeling pretty rotten, and very depressed. I was fortunate in finding a doctor whose sister had recently been diagnosed. She recognized the symptoms pretty quickly and had me tested.

When I say I was fortunate, I mean I was REALLY fortunate. If left untreated, hemochromatosis is fatal, as the extra iron deposits in the organs. Mine was caught just as my liver became affected so although there is some permanent damage there, it isn’t nearly as bad as it could have been.

What modifications do you use in your daily routine that help you deal with this?

The key is to rid the body of the extra iron and to limit iron intake. For several months, I went in for weekly phlebotomy (i.e., I’d have a pint of blood drawn every week). Now, I typically go several months between draws. I also watch my diet.

Do you think your disorder changes the end product of your creativity?  How so?

In my case, I was too sick to work outside the home. I was feeling physically horrible and emotionally drained, but I was restless and bored as well. I’d read every book I owned and couldn’t find anything that interested me enough to buy. This is why I started writing my first novel, so you could say that my illness led directly to my having an end product.

However, the way I was feeling also influenced what I was writing. Tess, my protagonist in Waiting For Spring, wasn’t dealing with a debilitating illness, but she was struggling with overwhelming feelings of worthlessness. Looking back, I realize that’s how I was feeling at the time. I couldn’t work. I was too exhausted and achy to do much of anything, really. There were days that driving my kids to school in the morning drained me for hours, and cooking a meal was a supreme effort. My house was always a wreck, which is probably why Tess is a clean freak. There was a lot of guilt there. I felt like I was letting my family down. I think that informed Tess’s journey.

What is the hardest part of dealing with your disorder?

Right now, my illness is pretty much under control. My treatment is one of maintenance at this point. In spite of that, I still don’t have the energy I once did. I find I’m still very susceptible to illness, and once I’ve caught something – even a simple cold or stomach flu – it takes quite awhile for me to get over it. So I have to be careful not to overdo things. I like doing what I want to do when I want to do it, but I’m not always able to. I have to accept that there are some things each day that might not get done, it’s just a matter of prioritizing and figuring out what the undone things are going to be. I think that acceptance is the hardest thing.

How did the people around you, your family and friends, react when you told them you were writing?

Oddly enough, the most common reaction was, “It’s about time.” Most of my family expected me to start writing books right out of school. I think my husband was just happy I’d found something to keep myself occupied. It helped to cure my raging case of The Grumpies, which was a relief to everyone.

If you decided to self-publish, why?

I originally began writing to keep myself occupied, but once my first novel was finished, I felt very strongly that I had something there that was worthy of publication. After the third rewrite (early 2007) I showed it to three friends of mine – one is a bookworm librarian, the other two are editors, all three are members of the Brutally Honest Brigade – and they agreed with me. They each also gave me valuable, specific feedback that helped me to get my manuscript whipped into shape. I began shopping it out to agents in mid-2007 and immediately got some positive response. Well, semi-positive. It boiled down to, I/we love this, but don’t think I/we can market it.

Conventional wisdom at the time was that I should put the manuscript away in a drawer and start writing a new, more marketable, book. I didn’t want to do that. I think it was partly because I’m naturally stubborn and partly because I’d so recently stared down my own mortality. I wasn’t about to let my novel rot away somewhere when I believed in it so strongly. I figured if those people couldn’t find an audience for my novel, I sure as hell could.

The problem was that I had no idea how to go about publishing the thing. At first I posted it on a free Google Pages website where people could read it for free and started blogging about it. I got a lot of positive response. In the meantime I did some research into self-publishing options and put out a print version on Lulu, which sold moderately well (around 300 copies). Shortly afterwards, Zoe Winters – indie author extraordinaire – came across my blog and educated me in the ways of ebooks and Moriah Jovan schooled me in the ways of properly formatting. I did even more research, then put my novel up on Smashwords and Amazon for Kindle (I also traded Lulu for Createspace for the print version). I haven’t looked back.

Ebook readers (the people, not the devices), especially early adopters, have truly embraced self-publishing authors, and we owe them a huge debt of gratitude.

Some links where you can find more from L.J.:

L.J.’s blog: http://rjkeller.wordpress.com/
Info about hemochromatosis: http://www.hemochromatosis.org/
Zoe Winters’ site: http://zoewinters.wordpress.com/
Moriah Jovan’s site: http://moriahjovan.com/mojo/