Gotta Start Somewhere--Or How Star Wars: The Force Awakens and Facebook Screwed With Me As I Was Dying

🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽
🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽
🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽🦽


Howdy there. I'm Rey Don'tSay. How do ya do?

Ain't never done much social media. I had to be dragged into FB by pushy friends many years ago.  Identity and the thieving of it seemed to be a big deal so I took on the name "Rey Don'tSay."  I do go by Rey in my real life because my actual name is a mess and hard to pronounce. It's heavily Latino with a rolling 'r' and other pitfalls.  I had to practice it over and over at 10-years-old to get it right myself.

Identity might be one of my themes.  It's hard on the ol' identity when you start out with a difficult-to-say name and to then be saddled with all the problems such a name brings along with it, in your humble, tender beginnings.  More in the future on why this is painfully so.

Back to 'Rey Don'tSay.'  It's clever, isn't it?  FB didn't think so.  I was in the midst of struggling (mostly losing) with cancer growing in my spinal column which had already crushed my spinal cord and left me paralyzed forever and ever when FB (that's Facebook, in case you wuz a-wonderin') was in a round of making people on their site PROVE who they were.  Apparently, in the fall of 2015, a new big Star Wars movie with a heroic female character named 'Rey' was coming out (that's her in the pic up there turning to the dark side in the next movie...um...Darth Rey??) and FB was cleansing the site of any pretenders with the same name and spelling.   Good thing I didn't call myself Chewbacca, don'tcha think? (Nevermind the fact I had body hair like a Wookie before the chemo changed all that!) Suddenly my FB account was locked up and I was being told that I needed to provide documents that Rey was my real name to unlock it.

Well, fuck me.  Here I am, mostly dying, and FB decided to kick me in the spiritually and physically broken-already back. I needed my friends and the love they threw at me (I'd met some excellent folk, like Garbo, and others, who'd given me friendship, strength, and encouragement in some of my darkest days ever.).  Too darn sick, so I capitulated. One evening, when I was pukey sickly from chemo and other strong meds trying to keep extra cancer from traveling the rest of the way up my spine and into my brain, I pulled out my driver's license and a VA hospital identification card, and frailly...wobbly...took photos of them and sent them off to Big Brother.  They only showed my real name:

Refugio.

It means 'refuge.'  Sounds 60s-ish, huh?  Hippie-ish, huh? Also sounds like a destiny--I doubt I'm even close to being one--in fact, I've been mostly in NEED of a refuge nearly all of my life (Take THAT, irony!).  You roll that 'R' heavy, throw in a 'foo,' and the 'g' sounds like an 'h' in Spanish, with the 'io' being a diphthong.

3 syllables.  Rreh-FOO-heeoh.   Best of luck on that (the 'ee' needs a bar over it but hell if I know how to do that).

Let's forget Refugio for a bit and go back to Rey Don'tSay.

Needless to say (but I'll say it), I was pissed and upset and depressed about it all. I was losing a name, an identity, a mask between myself and the world.  A blanket that kept my difficult past at bay and gave me a method to play and interact with the world.

Now, my friends were essential to me and had been for years. They, both real-life and online, along with my devoted and saintly and oftentimes pain-in-the-buttocks long-time partner--I'll call him Cleo, for Cleopatra, of course--WERE my family.  You see, I'd been uninvolved and detached from my blood family since the year 2000. Incommunicado. Verily, they weren't around at all when my body broke.

Nor was I around for their trials and pains neither. Lots of loss there. Foolish, frightened loss.

My younger brother (My siblings' names ARE mostly normal and easily pronounced. Thanks, parental units!) found my given name, the mandated Refugio one, on FB. He'd been looking for me for a while, previously unable to locate me under the "Don'tSay" nom de plumage.  He then contacted me and brought me back to my family. I'd been estranged from all of them for 18 years. This October will be 2 years since that lovely reunion happened. Happily. The bad stuff didn't come close to mattering much anymore.

Beforehand, I'd already been researching them for years and had had a folder there in the first week of my paralysis at the hospital just sitting on the rolling medical table in front of me, full of their contacts and where they lived, trying to decide whether to call or not. After how bad we'd left things then, I couldn't risk another catastrophe (What if they rejected me? In the midst of all that cancer and paralysis, illness and brokenness? Even a very possible looming death? I was overwhelmed and overwrought dealing with so much overmuch. Why risk further devastating pain if it all went horribly awry?), so I just stared at that folder. And cried. (I'm crying remembering, sigh. I'm a mush).

It's altogether different now. I've had another brush with death recently. This time with a bout of sepsis (It's a blood infection that is fatal quite readily.) that nearly killed me 2 months ago, end-of-July 2019.  Someone from my family (blood and non-blood) was there almost every day. It was 8 days in the hospital and a month-and-a-half of recovering. I'm barely up and functional on weakened metaphorical legs--yeahhhh...I still am, and permanently will be, um, cri--um...disabled. Still, what a difference in support it felt like from those earlier cancer and paralysis days and weeks and months.

Don't get me wrong, I had a lot of friends and paid shrinks to hand-hold and hug me through that evil time, and mostly it was just Cleo and me battling it out to survive the grimness of chemo, neon-yellow IV bags, test after test and then more tests after those tests, and bad government hospital food. He was around nearly every minute he wasn't at work. His kidney disease geared up just at that time too and included adjusting to 4-hour sessions of dialysis, 3 times a week, along with it all.  How we're around now at all is kind of beyond me. We're not strong. He's the hero, not me. Still, there was a big ol' empty hole gap of original-family comforting support just a-plain a-missing then. It's been quite very very nice to have that made a whole heck-of-a-lot better.

First time hugging Mom after 18 years:

So this fiasco with FB had quite the silver lining after all.  It sucks how life sometimes can't let your troubles stay dark and painful. They'll sometimes have a hopeful turn you never even see coming. You could say Star Wars reunited me with my estranged family after 18 years.  I don't say it, but you very well could!



I'll give you a list of labels for me you might hear about here in the future:  paraplegic, wheelchair, lymphoma, "good cancer," pain, soldier, seminarian, salutatorian, atheist, dancer, disabled, "differently-abled" (ugh), gay, masculine, Vet, TCM, writer (ha!), meditation, funny, funny-lookin', depression, borderline PD, DBT, suffering, survivor, lover, loner, serial killer, pixie.  (I'm just seeing if you're paying attention. Of course, I'm not a pixie!)

Identity can be a right awful mess, huh.

I listened to a P!nk album, a Greatest Hits one, on YouTube as I wrote this. https://www.youtube.com/watch?v=PA8EvexcSIA.  I mostly love "Beautiful Trauma," "Try," and "Please Don't Leave Me," quite a lot.  Though "Wild Hearts Can't Be Broken" made me stop and tear up some.

Once I get a lot of these base stories out of me, I hope to sound a lot less narcissistic. At least we can all hope.

The Cornholing Championships are on tv.  That somehow seems related. Laters.

Rey Don'tSay

Click here to go to the next Consortium of Seven post