Brace yourselves, kittens, Chooch has been officially notified of his reassignment to Albuquerque, NM, and his start date is October 2nd!!! The move will get us so much closer to Chooch’s 16 y.o. Son. (We haven’t made it to Cali yet, but we’re finally getting closer!) Added bonus? Along with Chooch’s Son, his Mom, Dad, Step-Mom, Sister and her Husband all live in the same area! Where we’ll live will actually be close enough for a road trip to soooo many beloved family members (and their babies!), including our own GrandSon Little Bear! We are so very happy, life’s gonna get so cute again! It should be a less-stressful position for Chooch, that we feel more fulfilling and less draining., and by all accounts (incl doctors), the region would hopefully improve how I feel with my health blahs. We don’t plan on living there forever, but we’re so very excited for this new adventure! Locals, we’re moving in mid to late September, which is VERY soon. We want to see as many people as we can while we prep to move and continue to purge down our items. If you want to gather before we move, please let me know. I’m hoping to do little gatherings to see as many as possible.
It’s a very big change, but with our resident middle son and our pup Kaylee going with us, we are BEYOND excited at this new adventure!
I got this in a fortune cookie the night before we got the big news!
This morning, I indulged in vague booking, to ensure that people not following an exchange know my rules for Facebook interactions. I was startled by a comment, but must comment out of fairness of the question. After two hours since starting my response, and looking at the length, I decided to make it a blog post. Who knows, maybe someone can relate or get a peek behind and invisible disability and accessibility entitlement.
My original vaguebook:
“When you ask someone for links to unheard claims they’ve made to you, but they won’t provide them because they’re above doing research for you to simply dismiss. Guess it’s not as clearly provable as the first statement indicated. I assumed it was info sharing, my bad. I wouldn’t ask for links if I don’t want them, but Grump supporters have trouble providing them. Interesting problem.But wow, such a timesaver! I won’t exert any effort into googling it since it’s not important to the person that made the claim, plus we clearly support different ideals for the country we share. If it were so truly important and relevant, why not shout it from the roof tops by linking to it?
FWIW, I follow each of the remaining candidates on FB in the race, and in addition, Chooch ensures I’m very well-informed. And thanks to my Mom, I’m not a pussy about my opinion WHEN I decide to share it. The combination of the two makes me impatient with speculation being named as fact, and being talked down or insulted into silence by anyone.
*bloop* heart emoticon
Peace.”
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Shay commented, “But… I’ve asked you for links to prove something you posted and you’ve said no. How is that different?”
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My response:
This is hard to explain without being accused (not by you!) of playing the pity card.
But you asked an honest question and my meds have kicked in (LOL), so I will be honest in response.
Just remember that I do not easily discuss this part and am sensitive on the subject, after suffering much brainy/scholarly elitism and shunning. Be honest in response, but not mean, please.
The short answer: is that the person could have easily Googled and linked, but choose not to, reportedly on principle, while I cannot Google easily with reliable results to know if we’re even talking about the same concepts. And my timeline is the best way to see where my opinion comes from and frequently, I can’t help beyond what I’ve already linked. Or maybe that day I was cranky about something totally unrelated and snapped at you unfairly. The long answer:
I publicly admit that constantly lowering the perceived intelligence bar is a true struggle for me, as I continue to go through different health issues and treatment attempts. They impact my comprehension, retention and other fun stuff. But I used to be intelligent, quick-witted and confident about it. My Google Fu was high, in those days. I loath asking for help and would find the answer myself if at all possible. “Beauty is only skin deep, but I’ll always have my mind,” I’d say to my overweight body. In fact, I didn’t discover I was strong in accounting, just like my Mom, until shortly before I lost that same strength. Just long enough to fully miss it, by even daring to dream of being a CPA some day. I didn’t appreciate it enough while I had it, because no one wants to face the possibility of what I have or worse -Alzheimer’s or dementia. For example, I spend half an hour writing something the length of the original post, with many re-reads. And I recently discovered that I attempted college in 2012, only because of my student loan history. I kinda remember what an instructor looked like, but not the name of the class(es?).
My mind is not on my side any longer. My memory is bizarre in its retention. I used to be logical and analytical and detailed and factual. Now I’m a blur trying to express things in a different language that I’m still working at learning to use effectively. I’m even fighting an anxiety attack for fear of inaccurately expressing myself and causing offense where I don’t mean it, while fighting a screaming sense of being under attack. But I don’t think you’re like that, so bear with me.
That’s not even mentioning the body issues or the other neurological symptoms that I have, primarily chronic intense pain and/or the resulting drugged stupor, with all the possibilities in-between in flux.
I’ve spent years fighting my disabilities and so far I’ve lost. I’m getting new specialists and have not nor will I ever stop seeking my “silver bullet,” but I have to come to terms with what my current reality is and grieve it. The silver lining is that it’s only pain and hopefully not degenerative or life shortening, other than not being able to run or have cardio exercise resulting in gaining back weight.
I have spent years in denial as to the width and breadth of the impact as I continue to try and find a way to function since onset in 2009. But the last years have crystallized things such that I simply don’t have that luxury anymore. I have to come to terms after I assess what that means.
So, I’ve spent some time grieving what I can no longer deny. I’m physically disabled my brain function is impacted. I can wield medication, caffeine, sugar and adrenaline to keep going with varying results. The same things happens ever ytime I stop moving though. I can’t move again until Recovery happens and I never know how long that will take. Currently stuck in bed, my head pain is primarily TMJ and my head is fairly clear from body pain meds, hence the ability to find words but there are too many of them. 😉
One of my work-arounds is that I need visuals and literal statements. It’s why my photo and video captures and Facebook check-ins have taken such a huge increase. I sincerely panic because I don’t know if I’ll remember that moment later. So, I don’t read summaries or opinions unless I struggle with understanding, because I need the original poster’s link to verify the source and its literal wording. I don’t want to confuse other opinions with facts, I’ll confuse them well enough with my own opinions, thank you very much.
An example of a work-around to my frequent inability to do my own research: I am blessed to have a husband that spreadsheets out even mildly complex data to help me with our decision-making. He doesn’t tell me what to think, he gives me the information that lets me draw my own conclusion.
He does that partly for himself, as a data junkie, but the amount of detail is unnecessary for him because he remembers things easily. I don’t. (This election cycle’s spreadsheet will be very interesting.) And because he knows that I’m still in here and he still (somehow, lol) loves me, he feeds my mind in a way that keeps it thriving.
He knows that I’m fighting to take in data — I can’t read dead tree books NOR can I work on computer screens for more than an ever-changing chunk of time with recovery time between. For the podcast we do, he only needs to watch the episode twice: once for pure enjoyment and again for show prompts. Meanwhile, I watch it anywhere from 2 to 5 times, depending on my health and the violence/emotional stress of the episode. I have to rewatch the previous season the week before the new season premiere to remember what the hell happened. I used to also listen to every episode we posted, so I wouldn’t be able to repeat myself, but haven’t been able to track that for at least 3 seasons. I frequently forget seeing entire movies and games played, but for all the pix I take.
I’m fighting to process data, since my thought processes now seem to be similar to my understanding of ADD. I even bought a recommended voice to text software to help with communication after a disastrous period of auto correct and dexterity fail. I added the app to my phone and then tried to install the software on my laptop, but struggle with such things and haven’t gotten far in the year + since I bought it.
I’m fighting to express myself, partly because of distortion filters that everyone has, but that I struggle desperately against. I also acknowledge that they are there, which makes me impatient with those that refuse to manage their own and/or their expectations of me as I continually manage my own expectations of others, based on the chaos in their own lives.
I struggle immensely with needing to be “accommodated” for my disabilities, but I have a fresh perspective after seeing how Canada’s society views me as opposed to the US after our visit this last weekend -without scorn, primarily. I paid it forward with kindness for others when I was of full health, and our society isn’t as kind as you’d think, on the daily.
I even struggle when the Fibromyalgia “fog” rolls in to make the simplest of choices. I have zero decisions or clear thoughts to give and as I was reminded this weekend, I shouldn’t be ashamed or embarrassed because of it. The medications make it worse. I simply have to allow myself to ask for help, accept it if I need it when it’s offered, or in this specific case in Facebook, specific information. But when I do and I then get slammed for being lazy and closed-minded, it really stings and I react accordingly.
In summary and after too-much explanation without a formal structure, that has taken me over three hours, off and on, to type, the difference is that I was asking for information and he denied it to me. The word entitlement comes to mind, but it may or may not apply.
So I can’t easily Google a few phrases with any hope of finding that specific point. I’m to remind myself that some people can’t calculate a tip in their head and I usually still can.
It’s just that I’m exhausted from callousness and accessibility elitism. I won’t explain myself to the person, either. The response is moot, as I can’t rely on my interpretation of it, so it‘s lose/lose and I’m not trying to shit on anyone else’s path, essentially. #IAdmitIHaveDistortionFilters #ButIAmAlsoWorkingOnIt #Thhhhhppbbbt
Specifically in my post, when I said, “I won’t exert any effort into googling it since it’s not important to the person that made the claim,” it was because that can turn into a huuuuge chunk of time for me and I won’t spend it there if it requires my attention greater than the resulting information could possibly impact. (Does that make sense?) So many offensive things have been done by candidates, even if it were true, it doesn’t come close to the damage done by Republicans against the interests minorities of any kind.
Sidebar: it’s especially hard to swallow from people in a minority under attacked. Hello? Ladies? Your vagina and uterus are being decided upon. Please make sure that your voice or your silence delivers the message you intend. <3
What I have said in sweeping general statements is only after I have cobbled together enough information thru extensive track-backs to original articles. I try to take great care in what I say because of gossip that’s gotten back to me and the unfair expectations on me. I’m gun-shy, but I say them because they are things I feel have been proven without me having to link to it, sometimes after posting the links previously. I use Facebook and other social media as a tool against isolation and depression and it’s not my job. It’s my tool for my specific use and I won’t take the time or energy to go back and research for someone else that can do it far faster than I and without needing a break afterwards. I’m speaking literally, here. The assumption that I can do otherwise is poorly drawn, but likely my fault since I’ve been shamed into not speaking about the mental aspect of my health blahs.
And sometimes, it’s complete passion that blinds me to say something, right and/or wrong. When I catch it, I admit it. Girl, I say dumb stuff all the time. I’m FAR more edited on a keyboard, same as anyone, but I too talk out of my ass. It’s part of the human condition.
That said, I estimate that almost to a one, my conclusions are drawn from things I’ve previously shared. If I’m wrong, link to the right information or don’t waste my time with bored trolling. I’m sorry they’re bored, but they should find a charity to donate their time to if they want to actually make a difference.
The disparity in level of effort isn’t considered and I was denied information. I’m ok with that, since, as I see it, I have been and will be disregarded at some point again later anyways. You should note the difference between the response there and the response here. It’s based on personal interactions and my understanding of the differences between the intentions of you both. I have no regrets.
Aren’t you glad you asked, Shay? I hope it makes sense, I’m out of time to organize it better. #Oops
There have been issues in previous years, as most folks know. I like to think we all want to gather and have fun together with folks that genuinely share interests, but either alcohol or missed social cues can and have created issues in the past.
Sadly, not everyone realizes how their actions can be seen as harassment. Consider reading this over to ensure you don’t cause upset to your fellow con-goers AND/OR how to handle behavior you deem as harassment you see or experience.
Also, if you see someone giving cues that there are in need of “rescue” please consider giving a distraction and/or exit assist. If you are not comfortable, please summon assistance as instructed in the policy. (Yup, gonna make you click that link and read it. #CliffHanger
Of note:
“Other people or their personal effects should not be touched–this includes hair, clothing, assistive devices, bags, and service animals–without an express invitation.
If physical contact is wished, express this verbally or with a friendly gesture, and do not proceed without a positive verbal or physical response.
Holding a hand out for a handshake and waiting for the other person to reciprocate is good example.”
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After seeing hotel renovations last week, I say this can be a fantastic experience yet again as our community gathers together to share, learn, contribute and geek out with our dice out!
I’ve seen and heard some amazing kindnesses demonstrated in honor of Patrick (P.G.) Holyfield since his fight with cancer began and ended in August.
I’m hand-picking this one specific kindness from Tony Miller to share, because it’s loving, touching, thoughtful and dignified. It’s so Tony. It’s so Patrick G. Holyfield.
And it’s something anyone can do to pay tribute, too, if you ever feel the urge or miss him or another wonderful man on any given tie-appropriate occasion.
Now, for background, Tony is a wonderful guy, a member of my own little Con(vention) Family and someone I am always thrilled to see because of the fond memories and also because of the way P.G. introduced him for the first time, as a trusted friend. That carries a lot of weight with me, as P.G. knew.
If you are also a friend of Tony’s, you know that he has a new job –teaching! Tony, I’ve already sent my congratulations to you, but I don’t know if I told you that I hated you couldn’t be one of our kids’ teachers. Even with the harm you cause shrubbery, you are an amazing person that I think would be a wonderful person for future leaders to learn from. You never cease to amaze me by breaking down stereotypes of men in general, but in particular, men from the south, except for the one about them being chivalrous.
Lately, Tony shares a new treat with us — frequent (daily?) photos or a demonstration video of knot ties he has learned, as well as those he is crafting himself. It’s very spiffy and the knots he makes are almost as awesome as the expressions he makes*. I love the series and hope he continues it. I have sons that need to know these things!
As a long-time friend of P.G.’s. He recently named a special tie-knot after him. One that Tony himself created and then demonstrated how to do-it-yourself, by posting a video on Youtube.
This week begins three public events (see below) being held in honor of our dear dear friend, author and immensely lovable example of human kindness, P.G. Holyfield. And knowing Tony Miller and P.G.’s friendship to be genuine and reciprocal and stretching over years, this is overwhelmingly poignant and touching for this gal**, but as my own showing of respect for this and so many other kindnesses, I am hoping to master this knot myself for at least one of these events, using a scarf or ribbon. please take time to learn and wear this creation of PG’s longtime friend, Tony Miller, anytime you choose.
I’m personally asking for those interested to share in this tribute by posting pix of themselves wearing it. Please tag P.G. and Tony, as I’m sure they will bring comfort to those that are and will always be, missing P.G. and continuing to check his social media pages because, what else can you do?
At a later date, if enough pictures are sent donning the knot, they will be posted to the Memorial Page that will be polished and shared with content soon.
You will need to submit photos to BTW@SpecFicMedia.com to be included in that or any other public honoring of him.
Love you, Tony <3
*Most people look staged in similar poses, but Tony’s look genuinely awkward or humble. Not fake or staged, even if they are.
**Literally overwhelming. It’s taken me days to write and hit ‘Publish’ on this post.
Information on the Tributes:
Wednesday, 10/8 at 9pm – Online Vid Tribute from The Beyond the Wall crew:
On Wednesday, October 8th, 2014 at 9pm Eastern, the Beyond the Wall crew will be recording a live podcast show in which we will bid farewell to our good friend, P.G. Holyfield.
If you would like to attend one or both of those events, please check the links on this post atSpecFicMedia.com.
Of course, we understand that not everyone will be able to attend in person.
For so many, these podcasts are how they knew him.
So, the show on Wednesday the 8th will be a way for us, and for you, to express your feelings about this man, who brought so many people together.
We on the crew will be sharing our feelings and memories, but, we would also like to hear from you. If you have words, audio or video that you would like to share, please email it to us at BTW@SpecFicMedia.com.
Even if you have already sent something, please re-send it if you would like it to appear on this show. If you would like to send something that is just for family or any other private audience, please indicate this in your email.
And of course, if you are reading this too late or are just unable to put your feelings together before we record, please send anyways.
Also, please help us boost the signal, both for this announcement and the show event links that will follow, so that everyone that would like to can participate.
P.G. Holyfield founded a great community at SpecFicMedia, but now his watch has ended.
Our watch continues and so we will carry on our sacred duty, which is to talk about things we love – and people that we love – with all of you.
Thank you, from your friends at SpecFicMedia.com.
Saturday: A Casual Gathering and A Celebration of Life in Honor of Patrick G. Holyfield
October 11th from 6 pm – 10 pm – Come and go as you are available
Flying Saucer in Charlotte, NC
9605 N Tryon St Suite A, Charlotte, North Carolina 28262
Chooch and I will be hosting an informal gathering in Charlotte on Saturday, (October 11th), at The Flying Saucer. (It’s a craft brew honoring restaurant, that we’ve enjoyed with P.G. in the past.)
The official time is from 6 – 8 pm, when we are guaranteed use of the private room. If our numbers dwindle, we may move to a large table or we may be allowed to stay in the private room. They have been wonderfully accommodating and will do their best for us.
There will be self-pay dining and libation offerings in mid-price range
A brief video of memories from Chooch and I including some favorite Con(vention) Family will be available for viewing at any time. Otherwise, come as you are able as you arrive from other destinations or to spend the time together. We hope to highlight P.G., our friendship and shared world with him, in the podcasting and convention realms.
This will be a celebration of life, his life, and our con family experiences with him, but also a place for those that wish for grieving and remembrance, as well.
If you have ideas for this celebration of his life, please make pledges of time or assistance, please send to BTW@SpecFicMedia.com.
If you have pix or vid clips you love of PG, please send to BTW@SpecFicMedia.com, for possible inclusion in the video we are hoping to complete. (Time constraints.)
Also, if you are local and available to assist, please let me know at the above email to coordinate with needs for this unexpected gathering/weekend.
Sunday: The Memorial Service in honor of Patrick G. Holyfield
Sunday, at 12pm – Embassy Suites Banquet Room located at 4800 S. Tryon St (near Charlotte Douglas Airport–they will have shuttle service).
A special room block and rate have been reserved and is available until Oct. 5 at 4pm. Call the hotel at 704-527-8400 and use PHM as the code for the rate.
Please forward any written sentiments, photos, audio or video you would like to make a part of my tribute to me (Kim AKA The Trustee) at kim@pghct.org.
Thank you so much for your thoughts and contributions. I truly look forward to seeing or hearing from all of you, either next week or in the future.
Saturday, September 20th, heading to friend's wedding celebration. #RallyForBelovedsWheneverPossible
New medication FAIL and I’m back to square one on Fibromyalgia relief and my neurologist won’t give me anything for the migraines. The Fibro meds worsen them and they also increase the frequency of them. Yes, he was right to, but now I am back to periods of time where I’m losing my mind a bit, to the persistent pain. I can’t work, watch tv, cook, bear light or noise and frequently the pain itself is so bad I can’t sleep. Over the last several years, having Soma was one of the very few thing that kept me sane and away from “dark places.” I could end the pain. I would be knocked out for half a day and useless for the other half, but the pain would stop for a little while. Long enough, to recharge for the next round.
I halted the latest medication last week, Cymbalta. The side effects were, let’s say, far ranging and intense. As bad or worse than the Nucynta, which I didn’t think would be possible. I’m not trying to be melodramatic, but the resulting feeling was akin to post-chemotherapy. Even when taking into account what August and September were for me both emotionally and physically, with my emotional/neuro triggers wreaking havoc on my physical pain and fatigue and nausea and dizziness and migraines, blah, blah, blah.
I had continued on the new meds, and doubled it as instructed. Last week or so, I halted it, because I cannot keep pumping that poison into my body when it’s not helping any of my symptoms and worsening others to the point of being unable to leave bed for anything but the bathroom, some days.
When I see my Rheumatologist again and make the next plan, I will follow-up again with the Neuro to look at migraine relief. I trust him, as he’s done right by me from the start. Even when he pissed me off by taking away my “nuclear option” for maddening and dark days of pain that won’t release, he only did it because I could die if I don’t take precautions on what I mix them with, so I really shouldn’t be mad at him. But I can’t be mad at my faulty body with any positive result, so I’ll be mad at him for just a bit longer before I cave in to logic.
But my latest medication attempt is done.
So, my vestibular migraines, fibromyalgia, tmj, other personal issues and the mixed bag of hilariously painful symptoms remain. It’s all worsened over the last six months, primarily due to medication changes and higher than normal stress and loss with continued worry on other fronts.
Or maybe it’s because I haven’t hit what Chooch has me referring to as “rock bottom” on my pain level. Meaning, the Fibro pain is at some point supposed to stop increasing, and then that’s what my expected pain level should be for the rest of my life. Unless it gets worse again. It seems I haven’t hit it yet, sadly, and winter is coming, along with stiff and jagged joints and less freedom of movement outside. Accommodations are being made to make it more comfortable and to hopefully be useful, too, even if just briefly.
But for the blessings of time with dear friends and family (my sister’s surgery went great and she’s recovering at the speed of light!!!!); three devastatingly handsome sons; an ironically delayed, yet glorious wedding for our oldest son; two new babies born PLUS a grandbaby on the way? I would’ve surely gone mad. Praise Baby Jesus for (evilsssssessssss) Facebook and the ability to see pictures of the faces so far away that are so deep in my heart. I still don’t trust ya, but thanks, Zucksy.
As my body is recovering as that nasty medication leaves my body, I don’t know if there are any medications left to try.
This one was put off for years as others were explored. When you know that a liver is a terrible thing to lose to prescription medication, you worry about how much they think is “safe enough” to pump into me with some of the fierce reactions I have. But there is much to do and many things to prepare for, so the search continues.
I’ve decided to attempt to incorporate the least stressful form of martial arts or yoga, depending on what’s available to me, once I’m able to regain some flexibility and strength. Even modified for my debilities, I must regain movement, regardless of the pain. An object in motion, stays in motion, after all. I had hoped to leap into a friend’s Krav Maga class, but that would be madness, I must now concede.
I’ll be starting smaller with yoga or tai chi via DVD initially, just until I’m more stable on my feet trying for balance. It’s not a strong suit for most dizzy people.
And just I’m hitting the Fifth anniversary of when the debilities became debilitating, but I also seem to approaching what appears to be the end of the road on what Western medicine has for me to try.
So all you skeptics are going to get to have loads of future fun at my expense as I delve further into dietary supplements, alternative medicine, meditation and regimented schedule. I do better when I am free to be on a tight schedule, so I’m attempting that in coming months. Hopefully, my memory will help me to set the reminders for it to be more effective. *crosses fingers*
I’m taking on some personal challenges after having watch a remarkable person fight death with literally every cell in his body and more strength, will, soul and courage believable. Some projects I’m dreaming of will get finished and some won’t.
I’m figuring out my limitations and working around them instead of hiding from them. The process will be messy and I’m going to do stuff wrong and poorly and ineffectively and the results will either be brazenly unpolished or over-wrought.
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.**
Our own pictures to follow, I have hundreds to sort, still. There are a few posted in my Flickr already, username Vivid Muse.
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* 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.
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:
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.
Of course, this was life-changing for me, because I was experiencing things and learning a lot that went unnoticed before, much of it damaging for my health or of loved ones. I’ve been able to really explore those, without the luxury of therapy because of financial reasons, but I’ve had successes and am again finding “my voice” again, after embarrassment and shame at my situation was the microphone I communicated through for so many years.
I’ve made great strides towards my emotional growth in overcoming the depression that has been worsened since my debilities and other health issues that prevent me from being able to provide income to help my family during an extremely expensive time. (College, high school senior, high school freshman, plus too many other things. You get me.) Much of this I credit to Chooch, who supports me unconditionally, and then makes sure I catch my bullshit when I’m blinded to it.
All this even after I learned about “Counting Spoons,” but have only recently been able to put them into practice and stand by the boundaries I’ve set with others and with myself. If it’s negative for me or those I love, I try to understand it and heal it. If I am unable, I move on, because I recognize as a human, I cannot fix everything for everyone, regardless of my overwhelming need to.
I evaluate, I learn, I adjust expectations (to a point, and in scale with the same considerations granted to me on an individual basis), verbalize my line in the sand long before it can get crossed and therefore, is not my fault when people trash it and my trust in them is lost. People have themselves to watch out for, after all, and to assume we have mutual goals and want to get there the exact same with others is the definition of insanity, I’m beginning to believe.
Although much of this is new to me, it isn’t new to this blog. I actually posted about it over a year ago, and what I called “hope fatigue.” I didn’t even remember writing or posting it until I searched for the Spoon Theory link, but I’m happy to say that I’ve continued following the beliefs listed there. But again, I don’t remember writing or posting it. Fascination doesn’t begin to cover it, but if nothing else, I think that it also helps to demonstrate my neurological state then and now.
I’m shocked as I read it at the number of errors in the post (left uncorrected, because this blog is my memory bank and this matters to me), but primarily because I’ve wasted so much time learning and re-learning (and re-learning, based on some of the 40+ posts sitting in the Drafts folder) the same lessons, over and over and over and over with the same issues and people.
So BAM! While I’m smack in the middle of facing and accepting my handicaps/disabilities/Health Blahs, I’m hit again with more knowledge on how dumb my dumb brain truly has been and how excellently (HA!) it performs when being that dumb. I am constantly reacting and off balance, not knowing if and when I could live this life by my standards again, rather than compromising with every person that crossed my path, whether I was being obviously taken advantage of or not.
I also chose to embrace my health FAIL and to test those limits, then define them, then accept them and adjust my expectations of myself, with the same kindness I grant others, regardless of how they treat me or my loved ones. We are human, after all, and each of us are flawed, and it’s really pretty simple, in practice.
The testing process was immensely humiliating, in front of friends and family. I kept over-extending myself while testing limitations and failing, then picking up the pieces, examining them again, discarding what didn’t work and keeping what did, and tried again. But all of it was with the feeling that I was on the outside looking in, rather than a person even involved in the interactions. Everything was muffled through the meds and Fibro Fog.
So, with Nucynta, I’m happy to report that I’ve (we’ve) benefited already from that effort, just since the first of this year. Yay! But I also truly discovered how lost I was in the medication, far far more than I ever thought. *hiss*
Sadly, my body simply can’t tolerate the Nucynta, or at least it in combination with other medications. After my visit a few weeks ago with my Rheumatologist, I’m now off of it with the next script. The negative health effects were too drastic and the fatigue and weakness had worsened. It did provide a measure of pain relief, but not enough for what my body went through trying to shake myself into movement. It felt literally toxic and I had constant nausea and an inability to eat more than a few bites of anything, therefore my blood sugar was in turmoil. Unacceptable with summer and my son and nephew visiting and the other awesome things we have planned!
A song I’ve loved for years, from the Garden State movie soundtrack. The movie and entire album is fantastic to my eyeballs and earholes, and is a shared love with our oldest 2 sons, which brings extra richness to it.
On a recent shuffle through my songs, it played and the lyrics hit my sweet spot and now I must share it.
Listen along, if you like, as you read the lyrics. Link to song (no vid) on YouTube:
