Month: September 2014

Categories
Friends Too Long For Twitter

Dragon*Con 2014

Note: There were so many tears, hugs and things happened that the trip is a haze, other than overwhelming and unending kindness, that I am literally relying on photos, as is true for all of August and most of September. I’m trying to make my way through it, so bear with me as I will be editing as I am better able to fill in my timeline.

The Original Plan

Earlier this year, after Chooch, P.G. and I decided again against attending Dragon*Con this year and planned instead to spend a frugal and fun weekend together again, and planned for all (as possible) future Labor Day weekends, whether we could swing Dragon*Con or not. Same as Balticon would forever be our “home con(vention). Roomies for Life and all that.

We knew we could re-consider, same as he had the year before, possibly making the drive to Hotlanta if we made the coveted “Short List” of actual nominees for the Parsec Awards.

Then P.G. was feeling sick in July.

Somewhere around there we found out we made had indeed made the short list for both our P.G.-created podcasts, SpecFicMedia.com Presents: Beyond the Wall, A Game of Thrones Podcast, as well as SFM.com Presents: Consumption (discussing all entertainment media we were consuming).

Obviously, Dragon*Con was the last thing on our mind, so when doing our battle planning for his fight against cancer, which included physical and emotional support, we included in our plans a cathartic and community-building opportunity. Blogs, video podcasts, Kickstarter, books, music, games, everything was possible when you had so little to lose.

And then, before it could even sink in that he had cancer – OUR Patrick?!?! Are you fucking KIDDING me?!?! – and *poof* he was gone.

We were then asked by many friends and peers and members of P.G’s family to please go and honor him at Dragon*Con. And while not having any desire to be drenched in sadness, but in desperate need of seeing people that understood better what the Con Family loss actually was. People that understood how we were feeling, in the weird no-family-land of our Con Family, and they would be there. They said they had hugs awaiting us. If you know me, I can’t resist a hug. Especially in days like these.

The Revised Plan
So, we  plotted it out. Originally, Kim, Chooch and I were to drive there on Sunday, attend the Parsec Awards, possibly stay for dinner with friends and drive home the same night.

The Again Revised Plan
Learning of the fundraising tribute event Scott Sigler and AB Kovacs were planning for P.G. at Dragon Con in the Hilton Hotel bar on Saturday is what got Chooch and I to Atlanta and Dragon*Con a full day earlier than planned, with the tremendous kindnesses and free beds, thanks to the Cosmically Sainted folks at Cosmoquest, which is what gave us the ability to make the long trek on no sleep and adrenaline long run out. Pamela Gay and her esteemed peers and staff are the very best of people.

The Event
Mr. Sigler spoke of P.G. Holyfield in a way that would have had him gruffly mumbling a self-deprecating comment and pointing out someone else as being more deserving. Because that’s how P.G. rolled. Always humble about how awesome he was to oh, so very many of us. I have proof in my inbox of just how awesome that an impact he had on folks, so much so that I’m struggling to pull it all together in time for the memorial weekend, planned October 11th and 12th, right around the corner.

One of the best parts was the “surprise” that Ms. Kovacs planned for Sigler with — a surprise gathering inspired of costumed fans of his galactic football book series, “The Rookie,” which I know someone will correct if I got details wrong.

The Result
People came in lovingly hand made, full galactic football league costumes, and many faces I feared seeing grief on were wearing costumes that made the whole thing even more surreal. But it was immensely easier for me to see their pain and hold their hands until we both felt better.

Some that came for that portion, knew Patrick and some didn’t, but they lifted a drink anyways, as Scott Sigler commanded.

His challenge was to make an additional donation based on how many showed up to toast in tribute* to the Patrick G. Holyfield Children’s Trust. He donated $5 per Toaster (not Cylon, the people that lifted a glass.) and $6 if they wore a hat like PG’s, which was a signature look for Patrick in all the areas of his life, I have discovered.

And Sigler blew me away with the resulting donation amount, based on 69 people, gathered in person to pay tribute. Seriously, the trusted toast counter ( John Cmar) said it and I had to roll my eyes. I mean, really?! LOL, yes, really.

The resulting donation? I don’t even think there were that many people in the entire restaurant. But that’s how Sigler rolls.**

Pictures from the Saturday night event are available for purchase from Bruce Press Photography. I covet the one with my clinging and grieving with Nicole, wearing what in hindsight reveals spider-like aspects I didn’t even notice until now. 

(Here is a peek at that specific picture. It’s kinda embarrassing, but very honest, so I lurve it.)

Our own pictures to follow, I have hundreds to sort, still. There are a few posted in my Flickr already, username Vivid Muse.

~~~~~~~~~~~~~~~~

* with that damned Tuaca, Patrick McLean

** In my heart forever, that Scott Sigler is. Even though most of his books scare me too much to read and the rest are sports-ball in space, somehow. The sports-ball part was a major hurdle, but it’s done. He’s in. Done deal.
And AB, aka A Real Girl, was already there. AND she told my way my fave story of Sigler’s will never be published.

 

Categories
Friends Health Too Long For Twitter

Wash That Ass, Every Day + “Raise Your Glass” by Pink

 

Photo yoinked From "Buddhism" Facebook Page
Photo yoinked From “Buddhism” Facebook Page

For this disabled and wander-lusting shut-in, there are necessary steps before attempting a “never give up,” assessment to see if I can overcome the necessaries to leave the house. (HA! at the notion that it’s a choice for EVERYONE, by the way.)

I have three rules, particularly important when in troubled times:

  • Clean clothes – No negotiations. Well-kept armour is key when dealing with social anxiety and neurological triggers.
  • Wash that ass, every day – Grants a minimum of +3 to Confidence and major increase to your Social Anxiety, due to toxic aura. (Plus, snuggling options for later.)
    Required: If you’re doing math to decide if you need a shower, the answer is always YES. NOW. (F*** the Con Rules. Wash. Your. Ass.)
    Remember: Some of us have overpowering olfactory senses and ass stank physically impacts me and likely many others, even if you don’t detect an odor. It’s not you, it’s your smell, kinda thing going on there. (This is typically only an issue on Dragon*Con elevators, because people don’t want to miss a second of the weekend.)
  • If you like to set your hair or wear make-up, wear your preferred hairstyle, warpaint and/or chapeau. EVERY time. Depending on level of effort, this step grants a +2 to +5 to Confidence and -3 to -5 well-intentioned questioners asking about your health when you are fighting super hard just to be there, but want to forget it and have fun. (At least 75% of the time, I apply mine in the car on the way, with uneven eyeliner and frequently forgotten mascara as a result and reward. #InMotion is better than #Still , in my book.)

Now that I’ve identified it, time to assess it and wrangle it. Life is short, as I’m so constantly reminded, and I don’t have time to waste on time-wasting issues.

Baby steps to the bedroom door…
Baby steps to laundry room…
Baby steps to the top of the stairs…

Grateful to be awake and well enough to type, for now. Happy Monday, beyotches.

In that vein, I’m sharing a song that’s been haunting me for months. It incorporates a lot of things/people/events/place, from Dragon*Con’s countless glass raisings in honor of fallen “brother,” Patrick G. Holyfield to snuggling with his Eldest Flower moments after his passing, including fist bumps over punched cake and gummy bears. And from hearing dear friend Nicole’s perfect way of saying “Noisy” when describing herself (TMI: it’s what I hear in place of “loud” in the actual lyrics.) AND the mix of costumes, tears, laughter, embraces, reaching out to build connections where there were none, simply because of the sincere kindness and peace they granted him as he was dying. And as he was trying to come to terms with it.

Also, I’m going to start linking through our affiliate store when I drop the little audio tidbits in, as soon as Chooch “Makes it so.” This is one of the few things I actually do, so the needs of our growing family (Grand Baby on the way) and greatly increasing expenses, I’m going to start trying to find ways to have money come in the door. Or figure out a road trip to see everyone before I hop on an ice floe near my birthplace, with the aurora borealis lighting up the sky. Hahaha, but actually, what a way to go!

The donate button is here on the site and I’m trying to figure out how to create income in ways that tangibly give and receive.

For now, just really really listen. You know if you are one of my achingly beloved “dirty little freaks,” as some may have been made to feel like during your years of not perfectly fitting in to societal norms. It’s one of the reasons con families exist. <3

Video link in youtube PLEASE note that this is not the clean version:

 

 

Lyrics by LyricsAZ :

 

“Raise Your Glass”

[Verse 1]
Right, right, turn off the lights
We’re gonna lose our minds tonight
What’s the deal, yo?

I love when it’s all too much
5 a.m. turn the radio up
Where’s the rock ‘n roll?Party crasher, panty snatcher
Call me up if you’re a gangsta
Don’t be fancy, just get dancy
Why so serious?

[Chorus]
So raise your glass if you are wrong
In all the right ways,
all my underdogs
We will never be, never be
anything but loud
And nitty, gritty,
dirty, little freaks

Won’t you come on and come on and
Raise your glass!
Just come on and come on and
Raise your glass! 

[Verse 2]
Slam, slam, oh hot damn
What part of a party don’t you understand?
Wish you’d just freak out
(Freak out already)Can’t stop, coming in hot
I should be locked up right on the spot
It’s so on right now
(It’s so fucking on right now)Party crasher, panty snatcher
Call me up if you’re a gangsta
Don’t be fancy, just get dancy
Why so serious?

[Chorus]
So raise your glass if you are wrong
In all the right ways,
all my underdogs
We will never be, never be
anything but loud
And nitty, gritty, dirty, little freaks
Won’t you come on and come on and

Raise your glass!
Just come on and come on and
Raise your glass!
Won’t you come on and come on and
Raise your glass!
Just come on and come on and
Raise your glass!

[Bridge]
Oh shit! My glass is empty
That sucks!

So if you’re too school for cool
(I mean)
And you’re treated like a fool
(You’re treated like a fool)
You can choose to let it go
We can always, we can always
party on our own

[Chorus]
So raise your (oh, fuck)
So raise your glass if you are wrong
In all the right ways,
all my underdogs
We will never be, never be
anything but loud
And nitty, gritty, dirty, little freaks

(So raise your glass if you are wrong)
So raise your glass if you are wrong
In all the right ways,
all my underdogs
We will never be, never be
anything but loud
And nitty, gritty,
dirty, little freaks

Won’t you come on and come on and
Raise your glass!
Just come on and come on and
Raise your glass!
Won’t you come on and come on and
Raise your glass for me!
Just come on and come on and
Raise your glass for me!
For me

 

Categories
Health Too Long For Twitter

Chronic Illness Bingo *yoinked* from Facebook

 

Dear friend Nobilis Reed shared this photo on Facebook, with his comment, “I know too many people this applies to, alas.”

Chronic Illness BINGO by HealingWell.com FB post

But my personal fave is missing: “Did you get a diagnosis, yet?”

Yet? Yet?

I’ve had them for years. Literally. It is one month before the fifth anniversary of when my body first got down so low that I couldn’t overcome all that was wrong with me. Five fucking years. I know it’s not as long as some, but it’s been a lifetime of limitations and poor decisions based on poor assessments and lots of regrets* in those five years.

The number grows as more issues are identified. I had no idea that all the stuff I’ve been working around my whole life wasn’t normal, so I burned myself out early trying to keep up. Note: no matter what you go to a doctor with, if you are overweight, that is the first diagnoses – with the instruction to stop being fat. It took a total physical and neurological collapse, but no, fat’s not the only thing wrong here.

Maybe when folks don’t get a known answer, and how you’ll be cured of “what’s wrong with you,” and with all they have to manage in their own lives, they just don’t retain it. It just gets a little old re-explaining things to the same faces over and over, saying the same things that they clearly didn’t retain, through no intended harm at all. What doesn’t have a clear villain, doesn’t exist, maybe?

The biggest things wrong with me are:
vestibular migraines (neuro – pain, dizziness, fatigue, nausea, light-headed);
neurocardiogenic syncope (neuro + cardiac – I’m likely to faint when under physical or emotional stressors);
fibromyalgia (neuro and constant physical pain, body-wide),
tmj (jaw joints, makes talking, eating, existing more difficult);
a mixed-bag of symptoms that I don’t know where to attribute anymore (neuro – comprehension, memory, cognitive, tremors, stutters, twitches, loss of control of facial muscles, sleep interruptions, and yeesh, more.)

I don’t get a cure, I get chronic pain and just-as-debilitating treatments for my disabilities. (Note: I like to call them my No-Longer abilities. It reminds me that I wasn’t always broken and of a life with more usefulness.)

But I also don’t get a death sentence.

So I’m taking it as a WIN and reminding those that don’t get what’s wrong with me, that there’s something that prevents me from doing all I want to and used to do for loved ones.

It’s not you not being loved, it’s me struggling with how to show love, in current days. Just staying sane is one of my fave accomplishments to date.

*Regrets. Yes, I have them. I don’t fear them. I embrace them to learn from them. I accept them as a way to prevent foolish mistakes in the future, through blindness to my past mistakes. I dunno if it works or not, but it’s my way.

So, the point? THINK before you speak. There are no guarantees in life and I didn’t used to be disabled NOR did I have clear warning that it was coming. (I have been having doctor’s appointments for some of these issues since I was a teenager, and always told that everything was fine. Well, it wasn’t.)

My reality now is that I can’t do physical. I can’t do mental. I get ideas but cannot execute them. I struggle with finding usefulness, because others’ expectations of me are too high.

And it’s not a competition either. Everyone has stuff. This is just part of mine.

Peace.

Categories
Friends Movies Too Long For Twitter

Spoilers, Sweetie – Guardians of the Galaxy and My Communication FAIL

I dunno if anyone else does this, but do you identify with anyone in Guardians of the Galaxy?

I see Naughty Bear as the Star Lord, partly because of facial similarity. (Yes, Star Lord is THAT handsome.)

That kind of thing. Do you do that? If so, who do you most identify with?

For brief reference, I tend to see movie team-ups broken down into the necessary gaming group requirements. Using City of Heroes MMORPG (RIP) as my examples:
a tank, a blaster, a controller, a healer, and a scrapper. (I may be missing a few and don’t know the City of Villains versions, but do you get what I mean?)

For myself, I am Groot. Because of his creaky body that could sometimes do cool stuff under extreme duress (and pay for it later, lol) , his limited speech (mine is self-limited due to neuro stuff) , his need to do other things that would cause him harm if it would save or help another to survive (oi, the bruises I came home with, lol.), my need to make circles around ones that I love and include sparklies was almost too much to bear at the theater, upon my second viewing. And so on, with my empath need to identify with an empathic character.

Also, after much self-examination, and what the last three weeks in August was, I find I was dropping my filter for brevity in urgent moments and then almost disappearing as I “translated” (as Pamela then called it).

I am having difficulty filtering now. It started over the summer. And in August it was ripped off my face. There was no choice. I have less tolerance for bullshit, and I don’t mean that in a judgmental way. I mean it in a physical condition impacting way.

Emotional stress triggers physical stress in my f***** up body.

When you add the lowered filtering, which LITERALLY only appears to be working on a fairly good level when I’m around kids, to the many many many many communication difficulties I was having at times, which many people can attest to (sadly), what I was putting in the public stream sounds to be gibberish and scared some friends, I may as well have been simply saying “I Am Groot.”

For that I am both sorry and humbly grateful for your concern.

#FuckCancer #BecausePGH

Categories
Too Long For Twitter

Cancer, Confusion and Hope?

Lego version of our own P.G. for his fight against cancer, with Arya Stark fighting by his side. by Christiana Ellis

I’ve not really done a full blog post for my friend, P.G. Holyfield, who we left this world far too early at age 46. It was cancer that hid in his body so long, we only had weeks when we thought we had years of the fight to support him through.  His second and final opinion was on a Friday, and he left us on the very next Wednesday. Although I am spending a lot of time talking about it, it still doesn’t feel real and likely won’t until we walk in the hotel for Balticon next year. I’m “planning” on going, but my health is such that it could be a disaster for me to attend. I don’t want to make it harder for anyone else.

Balticon Beats: The New Media Dance Party

In another place or time, possibly as a book I am writing as a result of seeing what real bravery is in a young-ish man, I will discuss how my dear friend has changed my life and my outlook on it, finding hope, love and compassion encircling someone that has been diagnosed. It’s a horrible way to go and I’ve seen it twice now (Mom and P.G.) and I no longer fear it. It steals our dignity, not who we are. It’s a big killer, I’m not down playing that. But I won’t give it my life AND my living, too. Fuck cancer. I have stuff to do until it may be my own turn.

When P.G. started talking in scary terms, I finally got off of my ass and went back to my ob/gyn for the genetic breast cancer marker test. Again. Last year my insurance wouldn’t cover any of it, so the entire $4k would be coming from our wallets. Being disabled, denied benefits again while unable to work, means that we have financial difficulty and will for some time. So, as the insurance company decided, they would test me for the marker if/when I am diagnosed with cancer. Brilliant, no? They’d have to run the fucking test anyways.

Sometime in February, I got a call from the lab itself, saying that Health Care Reform, aka Obamacare, now means that my insurance company HAS to pay, and with my fun maternal-side family history (Mom, Grandma + at least one of her sisters and my Great-Grandma all died of breast cancer), they may pay for the ENTIRE test.

When we got the scarier and more scarier sounding test results coming back, cancer fears kicked in. We were already talking about me staying with him at the house during post-chemo recovery. Been there, done that, and he was so strong after getting in to peak shape in the last year or two, we never doubted we’d be playing board games and watching movies and I could do my goofy cheerleader crap, too.

But we were all really scared, too. I turned my fear into action, and went back to my doctor to give another sample and to see what our copay on the BRCA genetic testing. I got a call last week, but … last week was still foggy time. I answered the call today and while I was expecting a financial discussion, I instead was told that …

… I do not carry any of the genetic markers for breast cancer (that they have identified and have tests for).

I don’t carry them.

So, I don’t know why all the women on my Mom’s side died of it. My Grandma and my Mom both had horrific recurrences years after their initial diagnoses.

Mom’s two sisters have not been diagnosed, but one went on a clinical trial in the mid-90s for a hopeful “prevention” of breast cancer medication. The other had a radical mastectomy after my Mom died (the surgery would have happened anyways, there were other health issues that are private).

So, I can’t say if it was something in the environment or some gene not discovered yet. And I’m just as confused about what to do as ever. But my next step is a risk analysis for getting it. I am three years younger than my Mom was at her first diagnosis, and it was advanced.

So, even though the person I thought I would be having chemotherapy with and laughing at our horrific symptoms instead of crying over them, well, he’s now gone.

I started this process because he made me brave enough to feel like I wan’t going to be facing it “alone,” even tho Chooch will be with me. It just would’ve been a support group with history and short-hand, and so I’m surprised to not have that as I’m moving forward.

And I am. I’m moving forward. I’m not alone, I’ve learned that in the last month. And I know cancer survivors, unfortunately.

And I doubt that I am facing cancer. I’ve been extremely vigilant. But I’m doing the risk analysis and seeing what lies before me anyways.

Somehow, I have so many people that are kind to me that I want to stick around longer.

And because I must finish on an “up” note, I’m also happy to announce that my oldest son, codename “M” or “Naughty Bear” is now married to a wonderful young woman.

I have an amazing family, with a new daughter(-in-law), codename: Galadriel (Gal for short).

And they are expecting their first child end of March. We don’t know the sex yet, but the baby has been nicknamed “Little Bear,” and according to my baby countdown app, is now the size of a lime. A LIME.

So, after the horrors of August, I look forward to the life that’s on its way, already growing and I can’t wait to meet him or her.

10451784_10204461026862630_4233800441249252593_n

Categories
Family Too Long For Twitter

Aerosmith’s “I Don’t Want to Miss a Thing” #BecausePGH

Silver lining, here’s one crushingly sweet song that has been on repeat on my mp3 player today. Especially sweet when you know who it comforts. (Newwwwp. Not me. Okay, NOW it’s a sob fest for me, because of GOOD reasons. And all y’all stop worrying about me, it’s stressing me out, lol.

Lyrics:

“I Don’t Want To Miss A Thing”

I could stay awake just to hear you breathing
Watch you smile while you are sleeping
While you’re far away and dreaming
I could spend my life in this sweet surrender
I could stay lost in this moment forever
Every moment spent with you is a moment I treasure

Don’t wanna close my eyes
I don’t wanna fall asleep
‘Cause I’d miss you, baby
And I don’t wanna miss a thing

‘Cause even when I dream of you
The sweetest dream would never do
I’d still miss you, baby
And I don’t wanna miss a thing

Lying close to you feeling your heart beating
And I’m wondering what you’re dreaming,
Wondering if it’s me you’re seeing
Then I kiss your eyes and thank God we’re together
And I just wanna stay with you
In this moment forever, forever and ever

I don’t wanna close my eyes
I don’t wanna fall asleep
‘Cause I’d miss you, baby
And I don’t wanna miss a thing

‘Cause even when I dream of you
The sweetest dream would never do
I’d still miss you, baby
And I don’t wanna miss a thing

I don’t wanna miss one smile
I don’t wanna miss one kiss
Well, I just wanna be with you
Right here with you, just like this

I just wanna hold you close
I feel your heart so close to mine
And just stay here in this moment
For the rest of time, yeah, yeah, yeah!

Don’t wanna close my eyes
Don’t wanna fall asleep
‘Cause I’d miss you, baby
And I don’t wanna miss a thing

‘Cause even when I dream of you
The sweetest dream would never do
I’d still miss you, baby
And I don’t wanna miss a thing

I don’t wanna close my eyes
I don’t wanna fall asleep
‘Cause I’d miss you, baby
And I don’t wanna miss a thing

‘Cause even when I dream of you
The sweetest dream would never do
and I’d still miss you, baby
And I don’t wanna miss a thing

Don’t wanna close my eyes
I don’t wanna fall asleep, yeah
I don’t wanna miss a thing
I don’t wanna miss a thing

 
#BecausePGH