Tuesday, 16 May 2017

Getting Featured in Celebrating Authors

I have been doing some reading on marketing and promoting for our books and came across a few author groups to join. One of them has some really nice and affordable options for promoting one's book. I am so excited to say that the first of these features is going up on Celebrating Authors, as seen in the badge above.

Keep a look out for some promotion happening for my book "Healing Your Life Through Activity - An Occupational Therapist's Story". We're working on an author interview. So strange to be interviewed but it's exciting too.

I guess it's time to begin a page on my website of "In the News" or "Press" or some fancy title.

I have a few reviews to add to this blog and am also very happy to say that sales are gradually happening. I have even had a request for my book to go into the library of a university in Australia.

It's all very exciting. I look forward to sharing more developments in the journey of this book.

This post is prepared for you by
Occupational Therapist, healing facilitator, certified infant massage instructor, freelance writer, author of "Healing Your Life Through Activity - An Occupational Therapist's Story" and co-author of "Tuvia Finds His Freedom".

Monday, 1 May 2017

Interview with Jess Axelson of Be Verbose

I met Jess in a freelance writing group that I am part of. It has been a pleasure to get to know her, especially through conducting the interview for this Q & A Interview. It is an honour to introduce my readers to Jess Axelson of Be Verbose.  

Q 1) Hi Jess, thank you for agreeing to be interviewed for my blog. When did you begin writing or discover that you enjoy writing?

Jess - I’ve been writing since I was a kid, as early as 7 years old. I learned to read very early, and books were the universe I felt I was missing at the time (I was, and still am, a bit of an old soul… I was terrible at being a child, I was too much in my own head to be normal). Writing came naturally after that, when I decided I could create my own universes as well as finding others.

Q 2) Thank you for sharing that. How did you discover freelance writing?

Jess - I had always loved writing, but my life took a lot of turns before I found it again. I had graduated with a degree in Industrial Design because I didn’t trust my ability to write well enough or consistently enough to get published, but I graduated college at the start of the Great Recession, so I was able to use that degree for eight months before the company I worked for went under and my life collapsed with it. I had to move from Washington state to Minnesota because there were no jobs, and even here I couldn’t find anything to keep me afloat or to even live independently (like most in my situation, I had to move back home to avoid total poverty). That’s a very depressing thing to do, obviously, and I had a history of depression since I started going to psychologists at nine years old. It’s difficult to be creative in those depths, or at least it was for me. My creativity left me. I couldn’t write a sentence. I stopped painting, another one of my hobbies. I just survived. When I got diagnosed, it just got worse, and through a series of ups and downs and poor decisions, I ended up where I was when the recession started, seven years later, until one night in November almost two years ago, I got my words back.

My uncle Rolf had Down’s Syndrome and lived in a group home. He had passed away almost a year ago, which was a very humbling experience for me. When he was in the hospital, comatose and septic with Parkinsons and dementia eating away his frontal lobe, all of the workers at his group home kept a vigil at his bedside. They brought him stuffed animals, they wept over him, they told stories about his life that I had never heard. They were his family, really, and with the exception of my father, who had been named his legal guardian after my grandparents moved out of the area, we weren’t. We knew so little about this man. We loved him, sure, but we had very few interactions with him besides holidays and the few weekends my father had free to take him to the farm where we lived and where he grew up. It changed my entire worldview. So when our main state newspaper, the Star Tribune, started publishing articles about the “seedy underbelly” of the adult care system, I took it very personally. These were good people that were getting slandered, and the perspective of all the articles was warped and one-sided. Our family was furious, but there was nothing that they could do. So one night, as I was thinking about all of this and how these poor people get nothing but grief and heartache for loving and taking care of these mentally disabled people, I decided that I could at least try to stand up for them. At 2 AM, inn the space of an hour and a half, and all on my tiny smartphone (the old 5s, with the mini screen and awful keyboard) while lying in bed and crying with anger, I wrote a letter to the editor. I only did one draft of it, and I didn’t expect it to go anywhere. The next day, though, I got an email from the editor saying that my letter would be a full-sized Counterpoint article to be published the following Monday. (here’s the link: http://www.startribune.com/counterpoint-for-uncle-rolfie-group-home-workers-were-his-family/348061931/)

It sounds silly, but it was like I had come back to life. I had always felt like I was supposed to be a writer, but during all of the years when I was lost and struggling, I felt like that part of me had died and would never come back. But that article saved me. The group home where my uncle had lived called to thank me for it. It moved my family to tears (re-reading it now, I’m back in that headspace that made me write it in the first place, it’s really weird and I’m misting up again). I felt, for the first time in years, like I did have a purpose and I could do more than just exist. I had a chance to live again. That’s when I decided that it was time to start freelancing.

Q 3) That is very moving. Would you be prepared to tell us something about your disability. How does the Ankylosing Spondylitis affect you?

Jess - I was diagnosed with Ankylosing Spondylitis (AS) when I was 27, about a year after I started having symptoms. That’s actually less time than the national average; it’s estimated that most people go for about eight years before they get a diagnosis. I’m lucky enough to live next to the Mayo Clinic, and I think that’s why I was diagnosed so quickly.

I apparently had the disease my entire life, and I can think back to many times when I had the pain I’m used to now but dismissed it as growing pains or something I had injured due to playing soccer every year since middle school. It was never a big part of my life until one day I got a sharp pain in my lower back that wouldn’t go away. It got worse daily, and within a month of that first pain, I was nearly immobilized. I could barely walk, and I just sort of shuffled along at a glacial pace to avoid as much pain as I could. I actually had to re-learn how to walk in a way that wouldn’t aggravate my joints. I couldn’t lie down because getting up was so painful. It was as though my spine and hips fell apart when I would lie down, and even shifting or rolling over to sleep would hurt so badly that I would wake up in tears. I wouldn’t be able to get up without allowing my bones to “re-assemble;” it felt like my spine had turned into one of those kids push puppet toys made of string and beads that would collapse into a heap and then come back together when you pushed a button. The process of standing up in the morning was about 20 minutes of sheer agony. The worst part is, since the disease is all internal, I looked fine so a lot of people didn’t believe me. I actually had to start bringing my parents to my doctors appointments so they could assure my doctors that yes, there was actually a very severe problem (that may be a woman thing, too; I hear a lot of similar stories from the women on my support boards).

AS is an autoimmune disease, which means that my body is constantly fighting itself, and it’s also a type of arthritis. The cartilage in my skeleton becomes inflamed, which is extremely painful, and eventually it will cause my cartilage to calcify and fuse the bones together. It’s called “bamboo spine,” which is a beautiful name for an awful disease. A lot of us are fused in a stooped position, with heads pointed down and nearly doubled over. I have to do a lot of stretches to avoid that, and it’s necessary to keep active to stave off the fusing and keep down my weight to keep as little stress on my joints and bones as possible (that part’s harder than it sounds, since almost every exercise I try aside from daily walks ends up with me on bedrest for at least a week, and I tend to eat my sadness when that happens). I got a dog to make sure I would still go outside and exercise, and not hole myself up and wallow in my self-pity. It’s a genetic disease, and after I found out I had it I was able to trace variations of it through my family tree. I found records of my ancestors dying of “arthritis” and having to have amputations because of it. My mother has a variation of it, and her mother was hunchbacked due to another variation.

I still have a lot of pain, obviously, even despite the ridiculous amounts of medications I’m on. Some days it feels like my lower back has pain that I can only compare to having an unfilled cavity. I have to walk with a cane sometimes, which is an odd look at 32 years old. It makes it difficult to sit for very long, so my days involve me being able to sit for maybe 30 minutes to an hour at a time before I have to lie down to alleviate some of the pain. I also have a lot of problems with my sternum, where it will feel for days like I’ve been punched square in the chest. It can hurt to even breathe some days, and with my hands and feet, so sometimes I can only write and type for a little bit at a time. I’m on immuno-suppressants, so I’m susceptible to every cold and flu I come across, and a lot of my medications have severe side effects. I’ve had to start taking medication for blood pressure and stomach problems because of the side effects, and I have to have monthly blood checks of my liver functions to make sure my meds aren’t killing it. One of my heavier meds can cause very fast-growing and un-treatable cancer, so that’s fun to have looming over me.

Q 4) I'm sorry to read of all your difficulties. As an OT, I certainly understand what you are describing. As I mentioned when we were messaging, I am very interested in the potential that I notice freelance writing can offer to those with challenges to their health. Can you share what how freelance writing enables you to earn as someone living with a disability?

Jess - As a disabled person, my options are very limited. I can’t work a normal full-time job like others, so I have very little money. I can’t afford a normal apartment so I live in disabled housing. But I’m too “able” to be considered fully disabled by the state since I can still walk sometimes and I can sit upright, so I’m stuck in a bit of a limbo between sick and well. That limbo is hell, and I don’t intend to stay in it. I have ambitions and desires just like anyone else, and disability in America seems to be set up to get people by only at a bare minimum. That’s not living; there’s no point to sitting around and waiting for things to happen. It feels like your humanity has been stripped away, and you’re nothing but a burden on the state or your family, with no more real worth or potential. Freelance writing felt to me like an open door to get out; like it’s my only option to live a normal life and feel like a person again. I can set my schedule according to how I feel that day, and working around my pain is much easier when I don’t have a boss who isn’t particularly concerned about how I feel (not that it’s their fault, and obviously, running a business can’t revolve around one employee’s health). And the money is far better than working for someone else, even with the tax nightmare that goes along with it.

Freelance writing has also done wonders for my mental health. There’s a proven link between inflammation and depression, and I certainly have major issues with it (I see a therapist and I’m on antidepressants as well), but since I’ve been writing, I’ve been happy again. A few years ago, I didn’t think that I could be happy any more. I struggled with suicidal thoughts for years, but since I’ve been writing again, those thoughts are mostly gone. I’ve started going out and having fun again, which I didn’t do for years due to both the cost and mental state. I feel like I have more energy now, even when I’m in a flare. I started wearing makeup again, when I hadn’t done that for five years. I care more about my appearance. I’ve started talking to members of the opposite sex, instead of hiding myself at the sight of an attractive person like I used to. I’m not ready to date yet, but I think I will be soon. It’s just been a transformative experience in general, and I really attribute that to feeling like I’m doing something worthwhile and good for my future (now that I feel like I have one again).

It sounds weird, but in a lot of ways, I really feel like this disability has been the best thing that ever happened to me. If I didn’t have it, I don’t know that I would be able to be pursuing my dream like this.

Q 5) Thank you for sharing Jess. What are your goals as a writer, you can select short term or long term goals or a combination?

Jess - I have so many ambitions, heh! I’ve got four different fiction books I’m working on writing, and I’m hoping to finish one by the end of the year. I want to do some non-fiction work, since I’ve always loved researching new topics. But short-term, I want to earn enough money for me to get out of disabled housing and feel normal again. I’d love to move back to the West Coast, it’s been hard to be away from the ocean for so long. I want to make enough money to travel, and maybe to get a house with a yard for my dog. I want to be able to be a foster mom, since I’d never have one of my own (I wouldn’t want a child to have what I have).

Mostly, my long and short term goals are to live like a normal person.

Q 6) Who is your role model as a writer? And lastly, what message would you like to leave for readers who also have a disability.

Jess - Role models are tough… I love the work that Michael Crichton did scientifically and I try to emulate the humor of Christopher Moore. But as far as a real literary role model, I’d have to say (and I will sound like every college dude ever but hear me out) Hunter Thomspon. Yes, he was a loose cannon with questionable morals, but the man could turn a phrase in a way that I could only dream of. I would also have to say J. K. Rowling, not because of her books (to be honest, I’ve never read a single Harry Potter novel), but for her, herself. She fought her way up out of nothing, wrote a great series, made a ton of money, and now she turns that money into great things for the world. If I was to get even a hundredth of her success I would hope I would be as magnanimous as she is.

And as far as advice goes, I would say that when you’re disabled, there are roadblocks everywhere and everyone else has their opinion on what you should be feeling and doing. There are stories all over the internet about people who “beat the odds” and “worked past their limitations,” and that’s all well and good, but don’t hold yourself to the standards of others. They aren’t in your body. Respect your limitations as much as you try to push against them. For every inspirational story you hear, there are a dozen more people who think that their life is over because of their disability. It isn’t over, but you don’t owe anyone an inspirational speech or to be a role model for others. Do what works for you. You aren’t a showpiece. It took me years to mourn my lost potential as an able-bodied person, and then several years after that where I felt like a failure because I wasn’t climbing mountains. Every time I tried to push myself too far my body stopped me, and I started to resent it. I have to remind myself all the time that I’m normal, no matter how many left turns I have to take to get where I want to be.

But even more than that, I’d say, don’t stop living. It’s easy to feel sorry for yourself, and it’s easy to do nothing. But that’s not living, and even though you’re disabled that doesn’t mean you’re less of a person. Hold on to your humanity. 

Thank you Jess for your very inspiring words. You certainly are a good writer and I wish you much success in developing your freelance writing business. If anyone reading this blog wishes to hire Jess for a writing job, she can be found via her website. If you have enjoyed this post as much as I have, do post a comment and let Jess know.

This post is prepared for you by
Occupational Therapist, healing facilitator, certified infant massage instructor, freelance writer, author of "Healing Your Life Through Activity - An Occupational Therapist's Story" and co-author of "Tuvia Finds His Freedom".
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