My Occasional Steed – A Wheelchair

Author: Vivid Muse  //  Category: Health, Soulful, Too Long For Twitter

It feels weird to make an announcement post of this, and it’s taken me days to write somewhat coherently (still fighting cooties), but I’m pushing publish as is. Apologies to thems that want one, but I’d rather do it this way than do it personally or have anyone surprised or worried, and have to console them, because that’s not what this is about.

It’s about accepting a tool and empowering myself with it, as I face an arduous drive to visit family in Texas and enjoying it as fully as physically possible.

But, you know me, it’s really about chasing giggles and my refusal to stop when my body fails but otherwise am well enough to go. And since I’m currently fighting cooties and feeling like an exposed raw nerve, I may as well be transparent before I change my mind, in case it helps someone else someday, somehow.

Similar to my previous post about using a walker at home, I’m not doing this until I feel like I have to, but with my health issues, including Fibromyalgia, I’ve long relied on wheelchairs at arrival gates at airports for the ability to get in motion faster. Being seated for the length of a flight with the other hazards to be navigated, I struggled and it slowed us down, so I started utilizing a provided wheelchair to stay out of the way of others and to make it to the next gate on time.* As health issues fluctuated, it’s become a tool I use with less hesitation and with Balticon coming…

So, last Labor Day weekend, 2015, I was in bad physical shape with lots of pain. I was also unwilling to miss out on a planned trip to the National Zoo, however, with family and dear friends. My choices were to either miss out and stay in bed OR swallow my pride and use a wheelchair loaned to me recently by dear friend, Lisa.

Our son, his wife, and their son were moving away the next month and I just didn’t want to miss a second with them. It was a glorious and happy, yet inconvenient day. And spending that time seated allowed me to physically feel well enough to attend a friend’s birthday celebration the next day, where Chooch and I introduced our grandson to friends that hadn’t met him yet. Although migraine stuff made me miss some of it, but, hey I was there! But I was embarrassed and it was so inconvenient for Chooch and the rest that I chose to kind of forget about it.

Until visiting friends earlier this month beyond The Wall, aka, the Canadian border. It was a delayed November anniversary prezzie to each other, delayed for passports and the promise of spring. We had stuff we wanted to see, but mainly visit with old and new friends we don’t often (or ever!) see in a less-chaotic-than-Balticon setting. We arrived Friday and did a bit of walking but retired early for recovery and fun the next day. I was fighting neurological stuff on Saturday until later in the evening when the physical pain and intense fatigue was hitting hard. We collapsed as soon as possible, but it was clear I pushed too hard while distracted with Niagara Falls, Toronto, a casino, a FrankenBurger King, butterflies, poutine, a romp through a Hollywood wax museum, but mainly enjoying our small group vibes in Buffalo + Canada to the point of addiction. They were all so kind and cautious about my health issues that it made them even more irresistible.

We had plans on Sunday to go to an aquarium, a lifelong passion of mine. It’s a shared passion and Chooch and I visit in every city, and drag along kids, whenever possible. But I found myself unable to walk beyond minimal needs after the excursions the days before, essentially because of my refusal to halt them earlier. I did the usual triage, heavy meds and leg elevation and soaks back at the hotel, but my body simply needed more recovery time before doing any walking and I was facing a day alone in the hotel room. In bed again, just a different place. Chooch would have offered to stay but I’d have kicked him out.

I was pretty devastated, so when it finally occurred to me, I scrambled to the Ripley’s Aquarium in Toronto website and yes, they lend wheelchairs for free on a first come, first serve basis. We weren’t even sure there would be a wheelchair available until we arrived and I really had no back up plan, other than napping in the car, but I was so swiftly and kindly accommodated that I only remember it as a blur of kindness until I found myself just inside the entrance – warm, seated comfortably with Chooch in front of the first sea life display as friends Nutty and Tek arrived. They’d had very little warning of my situation, but I know they are utterly accepting of my disabilities, and they were more kind and patient with the inherent inconvenience and delays.

I chose to go to the aquarium and risk embarrassment (few wheelchair riders seem to have cotton candy colored hair apparently, so I really stand out!) and am now choosing to share more pix, to show what I look like when in a chair and that I’m fine!  But more importantly, to show what I gain when I choose to swing from the chandeliers by bracing for stares and inconveniencing the HELL out of those that let me.

FACT: When you’re this age and this size, many adults assume you’re being lazy. It’s why I never go to the store if I need an electric cart. Nope. Parking in handicapped spots, legally, is bad enough.

But since I handily put away fears in face to face interactions, with family, friends, strangers and their kids, I’m also putting aside fear of ridicule by or accusations of sympathy and attention seeking. Becoming disabled at 40 with an invisible illness has been quite educational in teaching that no matter how intelligent, respected and seemingly kind people can be, in real life, that’s not always the case. Nothing stings quite as badly as when it’s someone I care about, but time heals all wounds, so don’t waste any more of my time if that’s your opinion. #HarshlyWorded? Can’t tell, #PainCranky.

A wheelchair won’t work every time to get me where I want/need to be, and that’s okay. I know I reach for every brass ring, and if others doubt that, I just will not waste energy on defending myself further.

I also hereby affirm that I stand by the pinky swear to a specific few about what to do if I find myself only mobile via a scooter thingy. A random sampling of statistics seem to show that for chronic conditions, once you get in, you don’t gain back full mobility again. Remind me to fight if I ever forget, but don’t judge me for using this tool, only as needed, I promise. *raises pinky* #YouKnowWhoYouAre

Clearly, it was a big deal for me, so I’m getting my own travel chair in case of need, to make it more possible for me to be out of my room and enjoy the special bonding time with far flung friends. Especially at the new, larger, more spread out convention hotel. If anyone has recommends for a lightweight travel wheelchair, plz and thank you link in the comments.

Here’s me, having no regrets, with wonderful people, out in the light of day. #NoShame #NoSadness #SilverLinings #ExtendedGiggleChasing

Click on the image below to go to the full Flickr album, if you like. That’s where the good stuff is… yup, my grandson at five months old, last Labor Day weekend at the zoo.

Giggles on Wheels

*For those that may be now considering a wheelchair for travel, I’m writing another post with my views in the next few days.

Memories with Sara

Author: Vivid Muse  //  Category: Family
Life changed direction and we grew apart. My memory sucks and looking at pictures is breaking me, so instead I’ll share memories on constant loop in my mind since last night.
Simply put, verbs from when we were young, and from when we were sisters and life stretched out like infinity in front of us.
  • Sharing eyeliner and makeup tips in the locker room after gym class.
  • Crushing on the same boy in high school. I can’t even remember his name or what he looked like.
  • Reconnecting after separately moving halfway across the country, closer than ever before.
  • Standing as a Feminist with a captial ‘F.’ You were the first person my age (early 20’s) to loudly proclaim it, and until then, I didn’t know you could just do that. I thought Gloria Steinem had to induct you or something.
  • Being the only person who would go see Henry Rollins’ spoken word show with me at DC Space in the late ’80s. You didn’t even like him then, you just knew how badly I wanted to go.
  • Overcoming the overturned Big Gulp all over our laps on the drive from Manassas. We decided we were women that put experience over appearance and went anyways.
  • Encouraging me, even after all that and the departure delay it meant that night, me to walk up to Henry after that show and talk to him and get him to sign books. I think it was my first artist moment and remains a favorite.
  • Being pen pals while away you were away at college because Facebook didn’t exist yet. We called too, but didn’t we have great fun in finding/sending silly cards?
  • Ganging up on me, along with my Mom, as we crawled our tortured way through DC and rush hour traffic in a soft-top Jeep Wrangler during a horrible rainstorm. Y’all wouldn’t stop until my crankiness finally snapped and I cussed you both out. When Mom said, “Well, bitch, bitch bitch, no one likes you,” we all started laughing and couldn’t stop for the whole ride home. I finally stopped caring about how late we were and we had such a great time, as literally no other trio could have done.
  • Surviving that one special first diaper change together, resulting in us both in tears on the floor laughing and crying because it wouldn’t STOP.
  • Laughing too loudly, as ever, on a harrowing road trip to Maine in a blizzard at night.
  • Using a cassette case on that trip to scrape snow from the windshield, without gloves.
  • Learning from stupid shit like that on how to be prepared and a bit more grown-up.
  • Loving all life, animal or human of any designation.
  • Sharing that love, ever so gently, with a fuzzy caterpillar found on a tree with the birthday boy and cousins. It made the mountain of gifts at the child’s birthday party invisible, during that magical time.
  • Teaching respect for life, by just as gently returning that caterpillar to where he was found, and explaining why you did so to the children listening so intently.
  • Making memories as you made gifts of homemade cinnamon/sugar butter as a kid’s activity.
  • Spending 3 hours in traffic to show up and take me out for ice cream on my birthday one year, just cuz you loved me and said I deserved spoiling and wouldn’t take no for an answer.
  • Comforting, with love and laughter, as my Mom fought her first battle against cancer.
  • Holding my sons in hospital, shortly after their births, instantly and forever an amazing and devoted aunt from when you first gazed on them.
  • Riding, your whole life, on the backs of horses you loved so much. The love and peace and special smile that would spread across your face when nuzzling was enchanting to watch.
  • Singing, louder than the stereo turned all the way up with the windows down. The song below sprang to mind and sounded so sweet with your voice that I won’t seek a meaningful song or read the lyrics of the one below for deeper meaning.
 I’m so grateful of all the other verbs, nouns, and undefinables that we shared, all those years ago.
Rest easy knowing you’ll never be forgotten and will always be missed and loved. Even with my failing memory, it’s simply not possible, darling one.

#EndCancer

A Too Wordy Response to a Facebook Comment on “Googling It”

Author: Vivid Muse  //  Category: Twitter/Facebook


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.”

~~~~~~~~~~
Shay commented, “But… I’ve asked you for links to prove something you posted and you’ve said no. How is that different?”
~~~~~~~~~~
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