Tag Archives: fibromyalgia

The trials of having this lesser-known disease, my attempts to speak out about it, research, how it effects my writing.

Living poetry

For the past few days, I’ve been digging through my chapbook manuscript, Life as a Moving Target.  I wrote it 5 years ago (??!) after being diagnosed with fibromyalgia and intractable vertigo.  Originally, it was just to cope with the changes in my life, but it grew beyond that.  So I decided to try to write a chapbook.  I ended up with about 40 pages.

Over time, I tried to get it published, but no luck so far.  That’s why I’ve decided to renew my efforts.  I want to educate people about fibro and intractable vertigo.  I’ve been made fun of, judged, and treated unfairly because of my health.  Most of it is simply ignorance.  And that was understandable 6 years ago.  Now, with medication out and commercials and stuff, people should be more aware.  But I still encounter ignorance, and it stings.

I feel that the poems in the chapbook are some of my very best.  They’re also a bit different from my other work.  They are grittier, more in-your-face.  I tell it like it is.  I think that suits the subject matter, because fibro and vertigo aren’t exactly light subjects.

So I hope to find a publisher for it. 

I wrote two poems late last year for the chapbook, and I noticed a difference in the feel.  Like, I’d changed.  And it’s true — I’ve made peace with it, am happier than I’ve ever been, and I’m almost pain-free.  I’d made some changes in my life, all for the better, and it has really helped.  I did include them, because they are pretty good.  But it’s interesting to note the difference.

And I’ve found that I really can’t go back and find my voice from when I wrote the bulk of the manuscript.  It’s like I’ve changed so much that my voice changed, too.  And that’s okay.

I also noticed, when editing the manuscript, I used alot of the techniques I use with writing.  Parts needed to be rewritten, and I found it tough to get back into the poetry mode.  It’s been years, folks, years.  I remember when I was younger, all I did was write poetry.  Got alot published, too.  But as fiction took hold of me, I began to write poetry less and less.  I did write a good amount of poems around the time I broke up with my ex-spouse, again as a way to cope, but that’s the last “poetry binge” I’ve been on.  Kind of sad, really, how life changes and your goals change. 

I thought about trying to get back into it, and I think I will, gradually.  I don’t want to put pressure on myself — I’m already a perfectionist — but I’d like to give it a shot.  Like, devote a few hours a week to it or something.  I have another chapbook, Love Letters, that I never did finish.

So, viva la poetry.  It’s time.

Update on things

Survivor  is almost finished, and I have almost 40k done in new words.  Pretty darned cool.  It is on hold for a bit while I’m working on Flamebound.  I needed a breather, so this works.  I will be finishing Survivor up by the end of the year for sure, barring any catastrophies. 

The shoulder/back is still really bad.  Had an MRI (hello, claustrophobia!) and no evidence of a rotator cuff tear or partial tear, which is good news.  I’ve been diagnosed with burstitis.  I can’t believe how painful it is.  I start P.T. sometime in the next week or so.

I started on Flamebound and am halfway done with the first draft.  It’s doing pretty well.  I’m happy with it so far, despite the Block of Doom last night.  I ended up ripping out 2 scenes that just were’t working and rewriting them.  Hopefully, this new stuff will be better.

Since I’m looking at trying to get this published after an edit/revision, my inner editor has been banging me over the head with a lot of insults and taunting, which is not good for drafting.  I’m very hard on myself anyways, but this has been a bit worse.  But I’m moving forward regardless.  I hope to have it done by the end of this week or the beginning of next week.

Sometime before the end of the year, I’d like to take a crack at Pirouette’s edit/revision.  Which means at minimum, it prolly won’t be done this year.  Which is okay.  I needed the time away, and I believe the story will be better for it.  Maybe 2009 will be the Year of the Agent.  We just never know.

Been also writing poetry for my chapbook, Life as a Moving Target.  I started it in 2004 and it’s basically done, but I wanted to write some new material.  Let’s just say that life has inspired me again.  I’ve shopped it around on and off for the past 4 years with no bites, so my intention is to edit the manuscript again and get it out the door either this year or the beginning of 2009.

The chapbook is about living with fibromyalgia and intractable vertigo.  One of my goals since being diagnosed was to educate the public about both of these conditions.  While fibro is talked about more, there are still people who don’t know it exists, and how it can profoundly affect a person’s life.  And still others don’t believe it even exists, which is so sad.

So that’s what’s going on right now.  Busy, working through this burtitis, trying to get as much done as humanely possible.

Numbers from vacation week: 16k.  Yes, in ONE week.  My personal best ever.  Had a few 3k days that pushed me over the edge there.

Year to date: 187k.  Very happy with those numbers.

Things are good.  I’m pretty happy.  I’m convinced that good things are coming my way.

Re-arrange me….let the world try.

This title *points up* describes my thought process at the moment.  Been doing alot of thinking about virtually everything.  The one thing I have never compromised on is on who I am.  In the core, I mean — not the usual dipshit stuff like annoying habits, etc.  — the Real Deal.  My soul.  I have never apologized for who and what I am.  My attitude since high school (after being repeatedly teased and traumatized by my classmates) has been if you don’t like me, too damn bad.  I am who I am, and that’s it.  In junior high I was too wrapped up in trying to fit in that it hadn’t quite touched down yet.  But, in high school, something clicked.  While it still hurt, alot, I started to not care.  I started to revel in the person that  I was becoming, instead of mourning the person that everyone teased.

It was a huge revelation at age 16.

And it is still with me to this day.  Even more so, because now I try to be different.  I purposely don’t follow the pack.  I am who I am.  If you don’t like me, then deal.

It also taught me a very important thing: the value of strength.  I come from a family of true warriors, so this isn’t all that surprising, but discovering it was.  When I was 15, I had major jaw surgery to correct severe TMJ.  The joints were literally worn away, and I was told, quite bluntly, that I’d lose all my teeth by the age of 20 (not to mention the pain of headaches and such that my dad goes through on almost a daily basis).  So I had the surgery.  Was wired shut for 2 months.  Had to be on a liquid diet.  Had to watch everyone around me enjoy food.  That part sucked.  But the pain wasn’t too bad….until they had to re-open my jaws (they were stuck in the same position for 2 mos.) and break adhesions.  Yes, I say break.  I came very close to breaking my mom’s fingers that day.  And folks, I have a high tolerance for pain.  But that–that was unreal.

At age 26, I got my first jaw infection, and had to have 4 pieces of hardware removed from my lower jaw on the left side.  More pain.  A wire had moved and was constantly poking me.  Every time I talked, ate, or just moved my mouth.  Scary stuff.  The second time was in 2004, over Christmas.  Upper left jaw, this time….a few more pieces.  Total: about half is gone.  I started with 28.

So I’m no stranger to pain, physical or otherwise.  As of yesterday, I’ve been divorced for a whole year.  I left my ex because he was unfaithful.  Actually, there’s more to it but suffice to say that it was the best possible thing for both of us.  It nearly killed me, and it was tough, and those sleepless nights sometimes still haunt me, but I made it to the other side.  I’m where I couldn’t picture myself being a year ago.  I couldn’t imagine ever being happy again.  But, life sure knows how to throw you curveballs because, wouldn’t you know it, I’m happier than I’ve ever been.  My health is better.  I feel emotionally strong again.  I’m not severely depressed.  I’m happy.  Imagine that.

But look what I had to go through to get there.  If I were to add up all the bad experiences of my 31 years, it would be a big number.  My life has never been easy.  I’ve always had to fight, to struggle, to make things happen.  I’m also driven to the point of obcession (OCD anyone?  I’m not, but I could be).  Why?  Well….I believe fervently (and this will sound really fucked up) that having fibromyalgia (an autoimmune disorder causing a myriad of symptoms including but not limited to dizziness, chronic fatique, severe pain, migraines, stomach problems…. etc) has caused me to work harder than most people.  I think that without it, I might have fallen prey to complacency, and would not be as accomplished as I am today.  It also made me take stock of my life, and focus on the things that count, toss away the garbage.  In that respect, it’s a true gift.  And I thank God every day for it.

So, we’re warriors.  My dad had his consultation with his surgeon today.  His surgery has been postponed because it’s not quite time yet (to preserve his privacy, I’m purposely omitting details, so it prolly sounds hokey, but it’s really okay) and in 4 months, his body will have had enough time to do what it has to to prepare.  It really is the best course of action.  He had to have a shot, and the doc suggested Monday.  My dad said, “Monday?  What about right now?”  The doc was floored.  That’s my dad.  Bring it on!  He wants this over.  He knows he’s in for alot of pain and discomfort and being laid up for awhile (which to him is not cool), but he’s doing everything he can to stay alive.  He’s making the choice to live.  To beat this thing and come out the other side, victorious.

I wrote a poem, many moons ago, about a failed engagement.  This poem became a song that my ex, my dad, and I used to perform.  It was sorta “our song.”  Anyways, it’s about fighting and being victorious.  It’s hard to sum up because it’s an experimental, very different kind of poem.  Here’s a snippet:

silence
on the other end of the line

it was a mistake
but you pushed
so now you have it.

you’ve reached
me
I am victorious.

It was actually me talking to the woman who used to be my best friend.  I can remember when I wrote it.  I was working the afternoon shift at the office of the job I had then, typing away, mostly freewriting, when my muse handed this to me on a silver platter.  I don’t think I even edited it much. 

Ah, the memories.

So, anyways, just wanted to share that.  I know, with everything in me that Dad will be okay.  That he’s strong, stronger than most, that he has history on his side (my grandfather fought in WWII and lived to tell about it –he’s still alive; my grandmother fought cancer and fibromyalgia) and he has us.  We love him and want him here with us.  But more so than that, we want him happy.  I want him to be out in the garage, working on his cars, cruising Gratiot and Woodward and going to his car club on  Thursdays.  I want him to walk me down the aisle if I ever get married again.  I want him to hold my first book in his hands and cry with me when I get The Call.  I want him to grow to a ripe old age of 100, and live the fullest life he can possibly live, because I love him, and dammit, he deserves that.  He deserves to be able to live his life, to enjoy the little things, to spend time tinkering with his cars.  He’s not ready to go yet, you know.  I don’t think that day will come for long time, if I know my Dad. 

He taught me how to fight.  I think if I had to pick one thing that he taught me, that profoundly changed the course of my life, I’d have to say that it’s fighting for what you believe in.  And I don’t just mean picket lines and unfair labor practices.  I’m talking about everything.  I fought to have a full life despite fibro; I fight to write every single day; I fight depression.  Different people fight for different things.  But it’s that spark — that fire that won’t extinguish; that thing deep inside that refuses to give up.  My dad won’t give up —he won’t let cancer take him.  I know this.  Just as I will fight, possibly forever, to be the writer I want to be.  Note that I didn’t say published.  I do want that, don’t get me wrong, but ultimately, it’s the words.  That’s what’s most important.  I want to be published but failing that I just want to write.  And sometimes, it’s not as easy as hitting little buttons.  Sometimes it feels like I’m tearing some deep part of me loose.  Sometimes it’s facing off with my muse.  Either way, I won’t be happy without it someplace in my life.  It’s a fact.

But anyhoo, my point is that you gotta fight for what you believe in, for that thing that won’t leave you alone, because you need to.  You need to be the person you want to be.  And if the world doesn’t like it, well, fuck ’em.

Queensryche really said it best here.  Really, truly, deeply.