Hi there! I woke up late this morning and kept falling back to sleep. I was having a dream that seemed so real, I thought I was awake, except I didn’t have dystonia, so I knew that was too good to be true. So, I woke up again. And cats were on me. So … I kept going back to sleep, until I finally woke up for good and said, okay enough already! Get up, you!
Then, I read my
many, many emails (after breakfast and a one-handed shower, of course), including one from Indiegogo, who has been nice enough to tell me I’m doing a really crappy job I need to raise my Gogo factor higher bug more people to give my campaign money. Even $1!
Here’s the cover of the latest book to remind you what that’s all about.
Well, I shall endeavor to persevere.
And I have continued to work on that chapter for the medical book on stroke recovery. The personal perspective? Remember? Here are a few more excerpts. I promise not to bore you with this again, okay? Honest!
Many well-meaning people suggest I use speech recognition software. This advice is actually contrary to my best interests in the long run. Because my dystonia was caused by a stroke, it makes more sense for me to keep typing. In this way, I hope to retrain my brain, like other stroke patients.
This concept has not only been supported by my doctors, but by a book I read called Train Your Mind, Change Your Brain by Sharon Begley. This book led me to seek alternative solutions to western medicine.
One of the most frustrating aspects of trying to get good information about my condition has been the lack of communication between researchers. I’m assuming this failure to share knowledge is probably due to the competitive nature of research done in order to win prizes, grants or other professional or financial compensation.
For me, the most interesting part of the book was learning that the Dalai Lama held an annual neuroscience conference. Along with discussing how stroke patients can retrain their brains due to brain plasticity, the book explored the potential for eastern medicine, meditation, and Buddhist techniques to aid in stroke recovery. Although dystonia wasn’t mentioned in the book, I wondered if anyone at the Dalai Lama’s Institute had even heard of my condition.
I looked up the Dalai Lama’s Institute online and sent them an email asking if they knew about dystonia. To my surprise, they responded. However, they knew nothing about dystonia.
This disheartened me, and not only because dystonia is the third-most common movement disorder. It just seemed to stand to reason that the Institute would be seeking solutions for a neurological problem that western medicine was incapable of treating adequately.
I even went so far as to try to contact Sharon Begley, but my email to her didn’t go through. So often when I read news about brain research that didn’t solve what I thought was a genuine problem, I’d wonder why they did it, when people with dystonia were desperately seeking solutions. After a while, I had to stop asking that question. I could go mad, continuing to wonder why the medical and research community didn’t have its act together.
As a result, I had to simply go on with the capabilities I still possessed and a whole lot of unanswered questions. This meant that the best I could do was try things and hoped that they made a difference. I tried all sorts of alternative therapies, ranging from acupuncture to acupressure to neuro-feedback to nutritional supplements. I also tried a variety of pharmaceuticals. Everything I tried involved time and/or money. Each time I tried something, I’d hope for even the slightest improvement, only to have my hopes dashed.
Yes, sad, isn’t it? Boo hoo.
Let’s go down to the part where I started my fourth blog.
At one point, I told a colleague that I had three blogs that I was posting to every day. She thought I should cut back on my blogging and suggested posting on a less frequent basis. This made sense, because I knew other bloggers didn’t post to their blogs every day. What I did was schedule certain days for posting on each of my blogs. This way, I could keep the content fresh and keep using them to establish my online presence.
Nonetheless, I was so determined to make a living as a writer through freelancing that I actually thought of establishing my expertise in a narrower niche. Since I had both interest and expertise on environmental issues, as a former land use attorney and EPA lawyer, this seemed like a great subject in which to specialize. I often thought the media did a bad job of covering health and environmental issues, due to oversimplification of the science or poor research. Too often, the media cite research studies and portray them as infallible answers to questions. Any scientist or lawyer who’s represented them can tell you that studies can be manipulated to create data to support a pre-ordained position.
So, even as I questioned the wisdom of doing so, I started a fourth blog called Green Reality Check. The Internet featured any number of green living and sustainability blogs, but I wanted to do something different. My blog’s purpose, at least at first, was to pin down, to the extent possible, where the fallacies lurked in the concept of the terms “green” and “sustainable”. I even took an online class in environmental writing. Plus I continued to write freelance. In fact, my first assignment was a revision of a legal treatise called Powell on Real Property. I revised three sections about various environmental laws. As a result, the editors continued to assign me other projects. However, if I wanted to be an environmental writer, I’d have to reach out and try to query other possible clients.
Therefore, along with trying to find clients through networking on and offline, I was now posting to four blogs. I was also scanning headlines for news items and blog posts that could provide material for any of the blogs. This kept me well-informed of developments on a wide array of topics, including politics, publishing, bookselling, writing, sustainability, environmentalism, nature conservation, films, book reviews, travel, health news and dystonia.
Between the onslaught of information I was picking through, the physical demands of all the work and the overall stress of everything, I was already feeling a bit overwhelmed. But I refused to give up. I wanted so much to write fiction and get my book back in print again. And write a whole series based on the character I’d created.
One of the most frustrating hurdles I faced when my novel went out of print was that many agents didn’t seem interested in representing my out-of-print novel, despite the unusual circumstances and the potential to create a whole series of books based on the protagonist, which was what mystery readers tend to like.
Despite this, I revised a previous novel to make it the sequel and wrote the third novel in the series. Then, at the suggestion of various agents, I wrote two stand-alone novels. I was at a loss for where to go next, so I just kept writing, submitting queries and getting rejections. The process reminded me of the old maxim: “Insanity is doing the same thing over and over and expecting a different result.”
I learned over time that I had to conserve my strength and focus on the positive things in life. I had to stay focused on getting the job done and not be distracted by wasted gestures and activities. I believe that over time this failure to acknowledge my own frustration and rage at my situation ultimately hurt me. I was so focused on proving to myself that I still had what it took to succeed, that I needed a way to ridicule myself for lack of other outlets.
The one time I had spoken to a shrink about my condition, he said, “Well, it won’t kill you, right?” Right, doc. It’ll only make you wish you were dead. Every damn day. For the rest of your life. And I was young. And it wasn’t fair.
Hell, there were nights I’d pray (even though I didn’t believe in God and cursed the non-existent God’s name on more than one occasion), “Please, let me die in my sleep tonight.” But I didn’t nor did I kill myself, because I felt I had a mission. And killing myself would be a waste of my potential. My life would’ve amounted to nothing. And my husband and family would suffer.
But I couldn’t talk about it, for fear of sounding ungrateful. Dystonia sufferers all differ, so I could truly empathize with them, but it was hard to explain my particular predicament. None of my writer friends truly understood my pain. On top of which, I felt guilty, because I knew others suffered much more than I did.
When I decided to self-publish my out-of-print novel, I hit upon an idea for a blog to market myself as an author. I called the blog, My Life on the Mid-List in homage to Kathy Griffin. I thought it was because Kathy Griffin was doing the kinds of things authors did all the time, in order to promote themselves. Events and so on. She made a joke of her own life and it worked out for her. I thought that idea had possibilities, though I wasn’t sure how well it would work for a writer.
However, I’d reached the point where my own life seemed so ridiculous, the only thing I could think to do was laugh at my calamities. And so I began my fifth blog.
Significantly, the very first thing I posted after the initial post was called “There’s No Crying in Publishing”. Essentially, it was a humorous diatribe that said, “You think you have problems? Try being me.”
I look at that now and realize I was a very angry person, who had to laugh at her own life or go mad. However, at the time, I was so consumed with presenting myself as being strong and capable, despite my disability, I failed to address the now obvious emotional issues I was burying beneath the humor.
All the while I’d been freelancing, I was writing fiction and sending queries to agents and reputable small publishers. I started my fifth blog in June 2009, along with self-publishing my out-of-print first novel, in a bid to establish a readership while I was seeking an agent or new publisher. The book had received a handful of great reviews from various publications. It also got some rave online reviews from readers.
My blog became my forum for sending up the bizarre nature of the publishing world. In the process, I discovered how to self-publish my work as ebooks. This wasn’t part a big plan on my part. I stumbled across the information by reading blogs about the subject. As a writer seeking a readership, it only made sense to me to take advantage of new technology to create, market and sell my books.
It didn’t take long for me to figure out that if I priced my ebooks low, I could make more money from volume sales. So, I took this approach, in the hopes that selling my ebooks cheaply would generate more sales, which hopefully would lead to more and better word of mouth about the books. When I started to see significant financial results, I threw myself even harder toward succeeding as a fiction writer. I continued to revise and write novels, which included two sequels to my first book and two stand-alone novels. I also wrote the occasional short story, some of which were published in anthologies.
Eventually, I grew tired of waiting for the publishing world to accept me. I decided to take the leap to self-publishing all my novels.
This felt like a huge gamble to me. Up until then, I would never have thought to self-publish all my work, let alone start trying to earn a living from fiction writing, before I’d had time to build a more substantial readership. However, blogging was my therapy. Furthermore, once I saw how well self-publishing ebooks could pay, if you played your cards right, I figured all the effort I was putting toward freelancing could be better spent establishing my credentials as an author.
So, I approached fiction writing and marketing the same way I did when I was freelancing. I looked for ways to sell my work, on and offline. In the process, I discovered that many approaches authors took to marketing their work were time-consuming, and required both physical stamina and social skills, both of which I was pushing to the limit. My secret disorder made it all the harder to keep going to events that didn’t pay off financially or doing things the old-fashioned way, such as driving all over creation to book signings, book festivals and other traditional selling venues.
I began to rely increasingly on technology, the Internet, blogging and Twitter to sell my work. It required far less time and was much more cost-efficient than the usual ways of getting the work out there.
I also gave myself a tongue-in-cheek motivational speech on my own blog by writing that I wasn’t going to let Helen Keller totally kick my ass. This was my way of laughing at my misfortune while acknowledging its existence. It was my way of saying, “I have a problem, but you’re not going to catch me crying about it.”
While I gained financially, having hit the ebook market early enough to avoid the huge competition new authors face now, I lost touch with people. At least, my face-to-face dealings with them were minimized so much, I began to feel like a hermit. However, I got to know people online, which seemed like enough for a while.
It soon got to the point where the only times I stepped away from the computer was on weekends, at writers conferences and for the odd special occasion. I literally had to pencil in relaxation time. I forced myself to do other things, because I feared becoming a complete shut-in. I yearned for the time when relaxation and fun came so simply. Yet, going out to parties and other social events requires that you always be on. I had to bite my tongue many times to keep from shouting my frustration to one hapless person or other, who couldn’t see the ordeal all the fun was for me.
Clearly, I was becoming consumed by my work and Internet interactions, to the point where I was losing touch with people right in my own backyard. It’s hard not to seek release through the freedom of speech the Internet grants you when you’re suffering and you have no idea if it will ever stop.
For nearly seven years, I conducted business this way. I kept writing, blogging and suffering silently. I think I found meaning and purpose in doing things for people online. Engaging in random acts of kindness on the Internet seemed to help me work through my own sorrows. It was also smart marketing and networking, in my opinion. And I could do it from home, without worries about how happy I looked, responding appropriately on the fly, physical exertion and myriad other things I’d always taken for granted before I developed a movement disorder.
Eventually, my work wore me down and I had to face my own demons. The turning point may have come while I was attending a regional dystonia conference. I was fast reaching the end of my rope, when I heard a speaker talking about acupuncture.
I’d done acupuncture before, so I wasn’t terribly hopeful when I sat in on the session. However, the presenter got me thinking about it again. His position was that you needed to see a practitioner that knew dystonia and was right for you. Acupuncture takes a highly subjective approach to treatment and cure. Not only is it more holistic than western medicine, but it emphasizes individualized care, based upon factors specific to each patient.
In other words, the only way to find out if acupuncture could help me was to find the right practitioner and give it a real shot. This had to be with the understanding that each patient requires a different approach. Each acupuncturist takes different approaches to the same set of symptoms. I think it’s this lack of standardized care that makes acupuncture so suspect or seemingly unworthy of being taken seriously by western medicine and traditional physicians.
However, I’d arrived at the point where I had to take responsibility and change the way I was treating and coping with my health problems. Simply writing, blogging and marketing weren’t cutting it anymore.
So, between my husband’s and my efforts, we were able to find an acupuncture clinic that treated stroke and movement disorders right at the hospital where I was going for traditional medical care. After a time, I noticed acupuncture seemed to provide small amounts of relief. While it didn’t fix the problem, I could feel a difference in my capabilities. These benefits took time to register on my radar. In addition, when my acupuncturist tested my grip after I underwent several months of treatment, even I could tell there were small improvements that I hadn’t noticed and wouldn’t have if he hadn’t bothered to check for them.
On top of this, acupuncture helped my overall relaxation and improved my mood, to an extent. I’m assuming that the theory would be that by balancing my body’s chi, acupuncture was treating my problems overall, at both a physical and emotional level.
I began to notice that after a session, I’d have thoughts that seemed almost revelatory. I started blogging about my post-acupuncture thoughts, because they seemed important and I wanted to share information, as usual.
These were thoughts I posted on my first blog, because I could write about anything there. So, in effect, that blog became like an online shrink, a place where I could vent about my problems and breakthroughs. However, I didn’t limit myself to talking about dystonia. I continued to fear being shunned or categorized, based upon my health problems. Further, I’d reached a point in my writing career where I had achieved enough success to where I was being taken seriously by my peers in the business. So, I worried about making too much of my condition on one blog, while marketing myself as an author on another. Given the still unhappy state of my physical and mental health, I’d begun discussing my problems more openly on my author blog. Always I would turn my problems into a joke, because the whole purpose of the blog was to laugh at my own misfortunes. This approach worked until it didn’t.
I eventually became so worn down by exertion and emotional baggage that I became depressed. When it reached the point where I couldn’t bear to move or do anything, I realized I needed more help than acupuncture alone could provide. However, I think acupuncture helped me understand that my moods were my responsibility. Thus, by blogging and getting acupuncture, I was realizing things about myself and sharing those thoughts online. In this way, my Random and Sundry Things blog became a virtual sounding board in which I did a slow turnaround in my mood and coping with my condition. However, this took time.
By the end of 2011, I’d reached an epic low outlook, when I decided to start taking antidepressants. I’d tried them before and, for some reason, chose not to keep taking them. However, when I realized that I’d become so depressed that I could barely muster the strength to get up in the morning, I knew I had to do something. So, I took another crack at managing my moods through pharmaceuticals.
A few things happened, all at once, that turned me around.
The first thing I noticed was that I was willing to try new approaches to my work. In fact, I seemed to find new resolve in taking the mood-enhancing drugs. But the drugs weren’t the only thing that changed my outlook. The acupuncture was bringing out long-buried thoughts and feelings that I needed to work through, as well as providing some relief from my physical symptoms.
By that time, I’d enjoyed more financial success as a fiction writer than I’d ever have thought possible as a new author with two novels and a handful of short stories. I was on the cusp of publishing my third novel in an increasingly competitive fiction writing market. And I could already read the writing on the wall. The boom days of self-publishing ebooks were over. My huge success the previous year, along with making the New York Times ebook bestseller list, were temporary states of being for an author who couldn’t or wouldn’t crank out books as fast as possible or, in essence, sell out to Amazon, a company that was poised to monopolize the publishing business.
The publishing world had changed, in both good ways and bad. Now, everyone was jumping aboard the self-publishing bandwagon. This made it much harder for any one author to stand out, especially one without much name recognition. Unless you were willing to sign up for Amazon’s Kindle Select program, which I chose not to do.
I wouldn’t do this, because publishing had changed. Amazon was clearly the dominant player in the ebook market, and it owned a number of publishing imprints, too. Anyone who was watching the market could see that Amazon was poised to take over publishing with help from authors, who called themselves indies, ironically. In fact, anyone who read the news could see that Amazon had far more than publishing and retailing on its plate. However, Amazon’s Kindle Select program requires participants to sell exclusively through Amazon. Thus, authors who sought success through the program were simply playing right into Amazon’s take-over strategy.
The pressure was on for me to adjust to changing times, even as I struggled with my own physical and emotional problems. However, I wouldn’t compromise the value of my books or my personal values while making those adjustments.
For all the years I’d been writing and selling fiction, I was shocked to read that some people considered self-published authors to be part of a cult or weird alternative lifestyle type movement. The publishing world seemed to be dismissing us out of hand. At least, at first, until it became obvious that self-published authors were actually smart entrepreneurs, who knew how to market and sell their work, as well as create it.
By the time I started taking antidepressants, I was looking for new outlets. Something to rejuvenate my passion for my work. I’d already focused more on improving my blogging and was seeing results in terms of attracting new followers and other bloggers who liked what they saw or left comments. At that point, I realized that blogging was like publishing, but different. Bloggers could gravitate toward one another, based on their shared interests, passions or most horrible moments. They could, in essence, be like an online support group. In January 2012, I registered for an indie film seminar that covered all the details of planning, financing and creating films as an independent producer. Even though I’d never thought about producing films, the seminar seemed like a good way to step away from my computer, meet new people and learn the ropes of the film business. I also had not only a feature film script, but hopes that someday my novels might be turned into movies.
In short, I fell back upon what I knew about personal networking. In my opinion, there’s no substitute for going places and actually meeting people. I’d found this to be true, before I got dystonia when I attended more writer’s conferences and events.
So I attended the seminar and learned about film production. I even realized that I could be a film producer if I chose to be, since it entailed using the same skills as organizing a fundraiser, something I’d actually done before. This realization was such a positive affirmation in itself that I blogged about it, and even attributed my dystonia as the spark that set things in motion.
My thinking was that if not for getting dystonia, I wouldn’t have organized the fundraiser, thus I never would have realized my own ability to be a producer. However, this epiphany was just one of many to come related to my dystonia.
I realized that coping with a bad condition was up to me. I realized that I could adapt and thrive, despite everything, if I wanted to.
Given what I’d learned about film production, it was only a matter of time before I realized that the same skills applied to producing books. And since I was actually a book producer, because I published my books under my own publishing imprint, all I had to do was use Internet resources to distribute them.
At the film seminar, I learned about crowdsourcing. This gave me an idea that I thought could result in a win for me, for readers, bookstores and authors. And I thought it was the perfect solution for self-published authors. One that wouldn’t create an Amazon monopoly, but would allow authors to distribute and sell books directly to readers.
This development was so positive I got right to work thinking about how I’d structure it. It could even be done in a way that would support bookstores, libraries and literacy groups that contributed.
Part of the reason I thought this could work is that I have hand sold and donated books on the Internet to places as far away as England and Australia, because I’ve gotten to know people living in those countries through blogging and social media.
This knowledge in itself was a powerful affirmation of what anyone could do on the Internet. However, I didn’t want my entire life to revolve around my computer. So, in the summer of 2012, I decided it was time to take a trip to Ireland and the UK. I left my laptop behind, and made plans to meet author friends I’d gotten to know only online.
I was even fortunate enough to meet a reader in England whose blog I read regularly. The salutary effects of traveling, experiencing other cultures and meeting new people cannot be understated. I came back from that vacation feeling reinvigorated and more confident that I could accomplish my goals, despite whatever setbacks I might experience trying to reach them.
Learning to cope with post-stroke dystonia has been and continues to be a process. I think of myself as a work-in-progress. As long as I can keep my spirits up and keep my work, play and life balanced, I figure I’ll be okay.
In my wildest dreams, I would love to meet with the Dalai Lama and tell him about dystonia, so the subject could be covered at the next neurological conference. I also wish that western and eastern medicine would combine forces to find more effective ways to deal with post-stroke disorders.
Zadie Smith’s 10 Rules of Writing really sums it up.
And check out the sidebar. Is this an interesting coincidence or what?
And way #furiouslyhappy kudos to TheBloggess Jenny Lawson on selling the sequel to her first book, to be titled FURIOUSLY HAPPY. Awesome!
I actually attended one of Jenny Lawson’s book signings, where I managed to sputter a few words to her
about having a stroke at a Barnes & Noble and gave her copies of my first novel and a Doctor Who book.
Don’t worry about finding the words, Jenny. But I don’t have to tell you that, do I?
I wonder what Judge Denise Cote would think of this.
Oh, I believe this could work really well. Subsidies usually do. But Judge Denise Cote, in her wisdom, doesn’t believe in cartels. She will, however, allow a technology company to monopolize publishing and subsidize its authors. Go figure, huh? Ha ha ha …
What was I saying about publishing and writing being
a crazy an awesome way to make a living?
PS: Any thoughts from the UK on these pics?
UPDATE: And in completely unrelated news, the Nats have made history!