Off The Rails

 

New painting: "Girl In A Hoodie" 1/18/17

The whole world has gone mad, it seems, and I should know… I went there first.

I can’t even fathom the changes about to take place in the country of my birth, the United States. Everyone is talking about it, no one is sure what is going to happen after tomorrow and I find myself with a set of worries that I didn’t have just a year ago. Maybe I should have had them then, though I don’t know what that would have done to change the actual outcome of the situation.

I worry about everything anyway, as it is. Anxiety, my lifelong companion.

January is, did you know, the month with the highest number of suicides? I read that in multiple places this month, though I didn’t see any studies or anything to back it up, I wouldn’t doubt it.

For one thing the weather is hell on most of the country here, and people don’t tend to deal with it well. I know I don’t. I hate winter, there is nothing peaceful or welcoming about it to me. I spend my days from the beginning of autumn counting until spring will return. When snow and icy wind will give way to softer breezes and budding flowers (even if I am allergic to almost everything on the freaking planet.)

For another thing, I think that by this point in the month the shiny “New Year” ideal has worn off and people realize that Bono had it right all those years ago when he sang what he did about New Year’s Day.

In my case, Bipolar has taken me off the rails of my life again. Every time it happens, I hate it more.

Every time they increase the same tired old medications because they’re afraid to give me anything else (again, allergy risk is high for me with any medication) and I’m left too tired to function to any degree that can be considered within the realm of reasonable, I hate it. Right now I’m sleeping about sixteen or eighteen hours a day. Ridiculous.

In the past few days, at least when I’ve been awake I’ve been drawn to art and music and writing even if only in a journal, and that is a promising sign. But is this small improvement all I can hope for, for the price I pay for taking the higher doses? It would seem so. But I keep taking my pills and I keep hoping it’ll get better, because there is nothing else I can do.

It feels like the winter makes my chronic pain worse, too. In case you’re coming in on this movie late and don’t know, I have a genetic disorder that is destroying my connective tissue. So my spine is a disaster, all my joints are. This disorder is the reason they had to remove the lenses in my eyes and why I’ll always be legally blind without my glasses (and in unfavorable lighting, like extreme bright and darkness, even with aphakia glasses. My vision depends on a controlled set of conditions that I can’t really control.) They had to remove the lenses to give me any sight back at all after the lenses mutated into an obstruction that kept all light from getting in, and replacement lenses failed and had to be removed before they destroyed my left eye (they only tried one at a time because they were worried such failure may occur.)

My physical pain is now completely untreated.

I was taking Lyrica for the pain in my legs for a long while and it did help some, enough to take the edge off, but I had to stop because it was making the depression worse. Now I am left with Advil and a prayer (if I were a praying soul) and that’s it. I should be in physical therapy but in addition to expensive copays there is no way I could get to the appointments since I can’t drive. I should have massage therapy: ditto.

My doctor wants me in a gentle swim exercise class and me and my ragged joints laugh at this. Even if I could get over the OCD germ obsession to get into the pool, I’d have to wear my glasses to be able to see anything and that wouldn’t work well at all. My “constellation” of medical conditions, as they call them, make each other worse: and prevent treatment most people would get for them individually, though there really is no treatment for the connective tissue thing. It just is what it is.

Between the post-stroke disability I have had since 2000 and the connective tissue disorder, I’m already a train wreck. Add in the Bipolar/OCD/PTSD and you’ve got a recipe for, well, me. This is what I deal with every day, in addition to a stack of other health issues major and minor that frustrate me at every turn.

Just when I get one under control to some degree I’ll forget and bend over to pick something up and out goes my back. I’ll reach for something and feel a shoulder go out of the socket. Ankles turn at the slightest misstep because of the shape of my feet and the fact one leg is a little shorter than the other. Damage to my right side from use of the forearm crutch for stability all these years has become a real thing.

Why am I blogging about all of this? Maybe because I’m trying to work out in my own head why I’m so tired all the time. I’m a “spoonie” and I know that but sometimes I forget and don’t understand why I get next to nothing done in a day. Age is not helping either, my 46^th birthday is this spring and I feel every single year.

Maybe I’m blogging in the hopes that those of you blessed with a measure of physical health won’t take it for granted for a second. Your sight, your sense of balance, your ability to drive a car even… things I bet most of you don’t think twice about in a day. Well, I want you to think twice. I want you to think three times, even. Because not everyone has those abilities and in this country with such limited public transportation and “benefits” that don’t even cover the cost of your insurance premiums and medications, being healthy enough to work and be independent is a gift that I wish everyone appreciated.

In the end that’s what I miss the most: my independence. I had a degree of it when I could drive before the stroke. If I’d received proper care at the time of the stroke (long story short, don’t go to the small local hospital, go to the University…) I could possibly have still kept that until I lost so much of my vision, then it was game over for driving anyway.

I don’t feel sorry for myself, and I don’t want anyone else to. I just want to get all of this out of my head and away from my thoughts so I can get on with my day, whatever the rest of it may contain. I think it might include painting something. If I publish this then I can say that it also included writing something, even though the words count, really, whether I share them or not.

Don’t take your health for granted, folks. Please take care of yourselves, prevent what ailments you can and do what you can to treat the ones you can’t prevent. There is nothing I could have done to prevent the state of my health because most of my issues are hereditary/genetic. I just got dealt a tricky hand. I know there are others with far worse situations… hence why I don’t feel sorry for myself.

I just want people to understand a little of what it’s like to live with chronic pain and illness in addition to mental illness. One of those would be a full time job, put the two together, and well, you get me.

And I’m just doing the best that I can day to day, sometimes hour to hour. It’s all any of us can do.

I’m going to be very glad, though, I must say, when January is over.

hugs,

~bru

January Roses

Typewriter Poem #32 and painting January Roses 

xoxo

-bru

My Publishing Dream (And How It Died/Changed)

My Publishing Dream (And How It Died Changed)

It hasn’t yet been a year, so I don’t know why this has been on my mind so much this week, but I’ve been mourning anew the loss of my publisher, Booktrope, which was forced to close their doors last year.

In my heart of hearts, the truth is I had seen the writing on the wall for some time, I just didn’t want to accept it. I hoped somehow they’d be able to keep the business up and running; that so many people who had invested so much time and so much love into so many books (they published almost 1000 books during their existence, five of which were mine) wouldn’t see their dream come crashing down.

Then it came crashing down.

Those who closed the business, those who ran it, lost a lot no doubt; but for some of the authors they had signed, those like me, I feel we lost something more. We lost not just our dreams of being published but the knowledge that we’d actually made it that far in the literary world.

“Why don’t you just republish the books yourself?” I hear that a lot, and the truth is that GODSPEED was self-published before Booktrope picked it up. The reasons I don’t do it are as personal as they are complicated (business-wise) and insurmountable (health-wise). If I lived in a different body, maybe I’d have more choices, but the best option I had in the end was to take my books and put them up on Wattpad.

I am so grateful for the existence of Wattpad.

I am so grateful to the creative teams who worked on my five books, that Wattpad was an acceptable option for me to pursue, because at least the books are still being read, daily, by someone somewhere in the world. How do I know? Because I receive reader comments on one book or another pretty much every single day.

Those messages are the reason why losing Booktrope hasn’t completely broken my heart. Because my books are still being read. And by a larger audience, especially of young readers who wouldn’t have been able to ever order them from Amazon anyway. Some in places where they don’t even have bookstores in their country.

I look at Wattpad as the world’s largest public library. I know it’s become much more as they’ve added special programs and contests and such. Having my books there really means something to me. It’s saved them from oblivion of non-existence; and it’s shown me that even though I’ve lost my publishing dream that I am still a writer, deep down inside. Even on the days when I can’t find the words to type, even on the days I spend more time thinking about writing than actually getting the words down because I’m in pain, or the Bipolar is rearing its ugly head, or whatever.

Why am I still sad today, then, if things have worked out so well with Wattpad? When I am so very grateful to Wattpad for all their support of my stories, and all that they have done for me?

Because something was lost when my books went out of print. I’m absolutely certain it matters to no one else in the world, but it matters to me and it still hurts.

Several ex-Booktrope authors have started their own independent presses and republished; others have sought and found other publishers. I didn’t try to do either. Because at this age (45) I know my limitations, and I know that the work involved is more than a full time job and if I were healthy enough for that I’d have a paying gig somewhere on top of publishing my books.

It’s also a matter of money. I’d need to hire pros to format, redesign covers again, market the books (as I have discovered over the years that doing your own marketing is another full time job all its own and I’d never attempt it again.)

I’ve asked people’s opinion of what I am now that I was a published novelist but my publisher went out of business. Am I still published? Am I unpublished? Am I simply “out of print”?

Most have said that no one can take the label of ‘published novelist’ away from me once it was bestowed; and I don’t for the life of me know why it even matters to me to have it, but it does. It means my books were more than files on a bunch of computers. It is a reminder that GODSPEED hit #1 in Steampunk literature on Amazon no less than three times, and OF STARDUST went to #2 in Romance>Fantasy. That WISHING CROSS STATION was #1 in free Time Travel books on Amazon in multiple countries during a promotion we did for it. My books existed.

There are still print copies out there for sale by third party sellers. Some are reasonable, and some are priced so ridiculously I have no idea why anyone would list a book for so much money when obviously no one is ever going to buy it. Sometimes they are unavailable for a while, then a copy will pop up on Amazon as available.

I think the hardest part is when someone on Wattpad tells me “this story should be published” or asks where they can buy a copy, and I have to try to explain that they were available for sale once, but the publisher no longer exists.

I know that it’s time to move on from the whole nightmare, and maybe writing about it once more and posting this will help me somehow. Maybe it’ll serve as a warning to other writers that just because you are published one day does not mean that you can’t be out of print tomorrow, so don’t invest too much of yourself into the label “published novelist”.

I’m still published as a poet in an anthology that’s available on Amazon, and I had art, short stories, other prose, and poems published in various literary magazines, too, all of which have now also closed down. One of my essays is still out there in an anthology (non-fiction). Another short story was published in another anthology… on and on.

I am, I suppose, after all still published.

Writing as an art form is one thing; publishing is an entirely different animal. I wrestled with trying to do all I was ‘supposed’ to do while my novels were in print, because I wanted to do everything I could to help make my books a success. No matter what I did it was never quite enough. There are just so many books published every single week, month, year… to try to get noticed can be shouting into the void and endlessly frustrating.

Does this post have a point? I hope so. I hope the point is that those who are going into the world of publishing should do so with both eyes wide open, fully aware that it is a business (not a magical dream factory) and one that can be very hard on a person emotionally, physically, and (especially if you’re going it on your own) financially too.

Be sure that it is really your dream before you leap into something. Be sure of who you are leaping into that something with, and all terms and conditions of any contracts before you sign them.

And above all, don’t confuse “published” with “permanent” because I’m here to tell you that one has absolutely nothing to do with the other. An author told me yesterday that going out of print is just a part of writing. Maybe so, but it was one that I didn’t even let myself consider when I was bright-eyed and newly published. I should have. Maybe it would have prepared me better for what was to come later on.

Lesson learned, the hard way.

I am not my books, but they are a part of who I am and always will be. Even if the only way for people to read them is to do so on a screen. At least it won’t cost them a penny to do it, and I don’t have to advertise my wares anymore and hope someone will click Buy It Now.

Go after your dreams, folks, just do it with your expectations in check. It could save you a lot of heartache down the road later on if you consider every possible outcome, even “out of print”.

xoxo

bru