Some Nitty Here, Some Gritty There ----- by Rey Don'tSay, the Saturday Guy

Well, hello there. I hope you're doing well. And I'm glad you're back.

Ever since my partner found out that I was calling him Cleopatra on here, this is what I've had to deal with. Miss Cleo is getting ready to start his dialysis machine. This has absolutely zero to do with my blog below, but she sure is something!

I'm going to talk more about my name like I did in my first blog a couple of weeks ago. It's going to echo the blog a little bit earlier this week that Bryan posted on Monday. Link to Bryan's Blog I'm referring to. So get ready for a gay (name) ol’ time. A note about my “Nothing” theme of last week’s blog. A link to my blog from last week (Dang, I didn't know there was gonna be THIS much homework!!) I happened to be reading something a Satanist wrote. Now, don’t run away. He was explaining stuff about his religion or philosophy and making a case that Satan was a light...bringing enlightenment to those open to it and stuff. He was a bright fellow and a better writer than I am. Anyways, forget all that. He's often asked if Satan is not evil, then what is? What is evil? His answer was the “Nothing.” If you remember the movie and book, The Neverending Story, you’ll recall that the Nothing was a force that was destroying the universe. The heroes were trying to stop it. It was the great Evil. The Satanist was saying that all the trappings of the Nothing, the denial of living, the denial of reality, was the actual true Evil of this existence. Not the good/bad struggle. I was thoroughly blown away (SPOILERS: Like their universe.). I maintain that Nothing can be useful in certain situations. Too much of anything though...

I want to update you on where I’m at health-wise. Not a complete history or anything, just a peek at what I’m dealing with right now. So: incurable lymphoma cancer, paralysis from my upper chest down (It’s called “complete” because there’s zero chance I’ll improve). Four years for both so far. Paralysis is far worse to deal with. I have most of my hands and arms but there are issues there. I was in the hospital at the end of July (2019) for sepsis, a blood infection that almost killed me. I’m still weak-ish and improving from that.
I have a sore on the crack where the left buttock meets the left thigh. It’s a “wound” now that needs special medical care. It was caused by “transfers” I do on a wooden sliding board, sliding my substantial behind and body into things like wheelchairs and car passenger seats. I’ve been told no more transfers, outside of what I use to get to hospital appointments. So no “living life” at the moment. Not that I did much living in the first place, but now I’m a prisoner of my bed til that wound heals or acts like it’s healing. This includes showers where I used to transfer onto a special shower chair. Bedbaths only, for a while.

This is the sliding board I use for bed and wheelchair transfers, though the logo is older on mine. The other side is all wood. You flip this over and put the black coarse part over your destination target to keep from slipping when you're sliding across.

I remember when I was first told about the wound, it was then I had the realization that “living life,” doing the things that people do, getting up, going places, living, could cause me sores that could open up, go deep, and possibly even kill me. The irony. Getting out of bed could murder me. Sad and angry. I get denied so much. More denial is just about intolerable. And yet... I have a new-ish spasm problem over the last several months. I usually have daily spasms of my legs and abdomen that can get especially painful to the point of being jerked around and squeezed like a tube of toothpaste. Screams happened and happen now. (Poor apartment neighbors, sigh) The worst spasms occur in bed at night. It’s been this way for years. All that's the old, regular spasm problem. This new spasm problem is not near as painful, but simply annoying as hell. I’m jerking from my mid-back to my legs in short bursts. Enough to push my torso up, like I’m being poked (not the fun kind) by a man with big fingers. It’s several times a minute, varying in intensity from little twinges to major tugs. I’m on heavy medication to treat the spasms (those jerks!) that dulls my brain and memory. The meds work only slightly and make the muscles of my legs and body stiffen in new exciting (being snarky) ways. They somehow give the old spasms more strength as they lock my legs. I use grabbers (and Cleo) to hold my foot out til the leg relaxes. It can take a good long while. Added to all that, I’ve had to cancel all my appointments this last week because I’ve been having loose loose (sorry) b-juice from my (deuce?) caboose. We thought it was a reaction to spicy (just barely) Mexican food, but it’s gone on way too long for that to be the case. It’s not the big D (figure it out, kids) because I’m not doing it all the time with stomach cramps and the like. It’s just “loose” at the mostly regular times. Except when I’ve been trying to get up, I’ve had “accidents” that made me have to give up trying and stay in bed. Not something you wanna deal with in public by your little lonesome. Sigh. I apologize for talking about this stuff so bluntly. It’s not normal and acceptable to discuss, and yet, it’s my reality. It’s sadly who I am and what I am. So for that reason, I felt it necessary to inform and describe. Thusly, even though I’m in bed, my energy is low, my sleep is bad, and my spirits are in the crapper (where I can’t physically go). How are YOU doing? This is where I’m a prick. You see, Cleo (the fake name for my virile studly man-partner) simply cannot win in the “suffering” battles no matter how crummy his dialysis makes him and it often does make him feel like a shit-zombie, getting his blood squished into a machine and cleaned because his kidneys suck. Just turning on my side in bed can be dramatic and painfully spasmatic and quite moan inducing. I win? Yay? Wow. That took a lot longer than I intended. You gonna stick around for some more of my name stuff? I’ll try to be brief. (Ha! Good luck, Matilda!) Well, like I said earlier in my first blog, my name is Refugio. Here's the link to THAT blog. It's different from the other blog I linked above. There’s a pronunciation guide in that very same blog. I couldn’t pronounce it, and only my parents could say it except for able Spanish speakers, for most of my early childhood. I was named after my father’s best friend...who he stopped being friends with a year after I was born. Sigh. It’s a religious name. Tied to the lesser-known Mexican saint mother-figure Nuestra Señora de Refugio. “Our Lady of Refuge.” So it’s a ‘Marian’ name from an apparition of Mary to somebody. (You’d think I know that story better than that, but oh well). So, there are easy snickers to be had for a gay guy to be named after a Mary figure. Sigh. Oh, the gay connections go a whole lot further. I was born on July 4th (so bang), in 1969 (ask your kids about 69 if you don’t know) ((so bang bang, if you’re good)). On the Chinese zodiac, that’s the year of the Rooster, also known as the C-word that rhymes with schlock! Or Spock, if you liked Trek like I do. Sigh. My Mom and Dad were at the drive-in on the 3rd when she went into labor with me. Guess the movie! If you said “The Sound of Music” then your hills were very much alive! Also, how DO you solve a problem like Maria? It's got to be loads easier than solving a problem like Refugio. It was also the month of the moon landing and the year of Woodstock, which also rhymes with that C-word... July makes me a Cancer. How’s that for a kick-,no, SPASM-, in-da-pants? How could I NOT be gay? That's the gayest birthday of all time! Back to “Refugio." It has its own nickname in Spanish. Much like Dick is to Richard. (No, not another gay connection, puh-leeze). That nickname is “Cuca” for a Refugia (yes, they have those), and “Cuco” for a Refugio. (koo-koh) I have no idea where and how that happened. Anyways my year-older brother couldn’t say Cuco. He said “Cookie, Mommy? Cookie?” And thus, my childhood and family nickname was born. (sad bang) Do you know how hard a name like Cookie is for a sensitive little kid with identity and sexuality issues churning? Don’t cry, Cookie. Aww, is the Cookie crumbling? Don't get all kooky, Cookie. In Spanish that was sometimes lengthened to Cookeen, or Cooqeen, however THAT’s spelled. Might be Cuquin, now that I think about it. I HATED Cookie. HATED HATED HATED. See, I said that in the appropriate 3 times. I really hated it. The choices were sad. Either have the relatively simple but hilarious “Cookie” as my moniker or the pleasure of having my real name, Refugio, mangled and strangled by the un-initiated?
My Dad sold life insurance independently. (He worked for several companies at once. You can do that). So we moved a lot growing up. We finally moved to a suburb of Dallas about a month into my 5th grade in a new school, in a new city. The Cookie thing was KILLING me. I decided it was time to grow up. I decided to be only called the magisterial “Refugio” at school and made my family say it too---at least in public. I was so clever. HAH. If I was lucky I got Ree-FOO-gee-oh. I was rarely lucky. The horror blossomed. Names I’ve been called because of my insistence of using my real name: Referee, Refereegio, Fugi, Fooge, Fugio, Fuji-Film (heavily advertised then), Refridge, Frigio, Frigid, Refrigeratero, Fridge, Refrigerator sometimes, Refurrio (How they mistakenly pronounce a small city named Refugio near Galveston, TX) Reef, Reefer (a band name in HS I didn’t even know WHAT it was!! Siggggggh!) (It didn’t make me cool). My assistant band teacher gave up completely and called me Ralph for years. I’m serious.

I knew there was a Refugio, TX, that was the county seat of Refugio, County TX (Pronounced Refurrio there.). It was where Hurricane Harvey first hit (Weather forecasters ignored it because it’s a tiny town and the name is hard to say.). Nolan Ryan, probably the best baseball pitcher of all time, was born there. I DIDN’T know there was ALSO another town named EL Refugio, TX, too. It’s on the Rio Grande, on the border. It holds one of Trump’s Concentration Camps, whoops, Detention Centers, I meant.

Boy, this Refugio name is not the refuge it was promised to be, eh?
“Cookie” would leak out sometimes. Another time for a belly laugh. You wouldn’t recognize me at all back then. I was a serious, sad, lonely, kid. Always laughed at, never joining in. Unable to laugh at myself.
Now I’m crippled. Yay. It’s ok. Just how it happens. It got easier as I grew. Or I got used to it. Still, when I joined the Army at 21, (I think?), I thought it would be funny to get drill sergeants and Army folk to call me Rey because in Spanish it means King. Bow before the Rey, ye filthy peasants!! (Vanity, thy name is Delusions of Grandeur!) I wish I’d thought of that Rey business at 11 when I went on the Refugio kick. (Or spasm?) They only use last names in the Army! SIIIIIIIIIIIIGGGGGGGHHHHHHH!
Koff, koff, loser, koff. Ah well. I tried. My last name is also very Latino and not easy to pronounce. Ain’t I lucky? Well. I hope you had fun. I sure did.

Rey Don'tSay

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