Friday, September 13, 2013

Charlie's Spot and Assorted Ramblings

I keep meaning to post here... but, to be honest, days are long right now and nights are early. By the time I'm thinking I'm ready to sit down and type, I find myself fading out and ready for sleep.

It's been a long month, 3 hours a day spent in a car, driving back and forth to Nashville, and that's not even counting the time actually spent IN Nashville. That's all coming to an end on Wednesday, when Charlie returns home. Well, home *kinda*... technically, he's returning to his mom's house down the road from us, because it'll be best for him for the next few months/year while we get our living situation at OUR home to where it's easier for him to be out there. I want him home with me, obviously, but... c'est la and all that shit.

So many things going through my head, still.

It's painful to work with him on (re)learning basic things, like the ABC's, or counting past 10. Words like "water" or "bed." Shopping in the preschool section of Barnes & Noble for my 48-yr-old partner was heartbreaking. He understands concepts completely (trust me when I say he's fully capable of following a conversation, and understands all that goes on around him) but the words aren't there for him... Charlie... probably one of the most eloquent and intelligent people I know of. We look at flash cards designed for 3-5 year olds, he studies them... and shakes his head. If I say "A" he repeats it, sounds it out... but five minutes later, if I show him the same card, it's already gone, that file tucked away, but the path to it is lost. I know this one takes time, the re-aquisition  of vocabulary, but it's also one of the more challenging aspects for both of us. The physical is the easy part, muscles "learn well." They're simple beasts. The brain...

The brain is  kooky thing. We sat there one day, and he sang along to the ENTIRE Joan Osbourne album "Relish"... the entire thing he got right (except for the mumbled parts where he never knew what she was saying to begin with). But then, when asked if he wanted to go outside, he couldn't say "outside." Kooky, I tell you... kooky! That whole right brain vs left brain thing. We tried singing answers to questions, to see if that would allow the files that are hidden to be accessed, but it was a no go. So far.

Or, like last week... he'd been working on saying Ajakx (who has been in to visit him several times, thankfully they allow pet visitation at the place he's in). He'd been getting pretty good at it... but was having difficulty with "Ripley" (the new pooch). A few days later, he popped out with "Ripley" with no problem... but couldn't get "Ajakx" again. Or reading cards from friends... most, he looks at, shakes his head, and I read it to him. But on Wednesday, he gets one from our friend from Barbro in Sweden... he looks at it, and goes "Barbara." Close enough for me... but it's odd since he only knew her from when we worked in Phoenix (she was this very shy woman who was staying in the same hotel as us whom we befriended)... he gets her name, but ones from his aunts, longtime friends... ME he doesn't.

He does no know how to say "I love you" when it comes time for me to leave at night. I may have uber-pressured him into learning that one, though!

Then the financial aspects... basically both of us losing our job in essence, the ever-increasing pile of bills, yadda yadda yadda. Those weigh heavily, even when I remind myself that we existed w/out our current (well-paying) job... but then I also remind myself that we didn't have a giant pile of bills at that time, either, and were able to travel and both able to work. It'll work itself out one way or another, that I know. It's just going to mean some major lifestyle changes.

Many of our friends have been generous with donations, but it still leaves a lot to be covered. Honestly, it sends me into a bit of a panic. I recall how when I was young, my father's health issues... bitten by a rattlesnake one year (two weeks in ICU)... followed by heart surgery... followed by back surgery... broke our family in the most literal of senses. I don't think I ever realized how that scarred me in its own way until now.

Not so much a fear of being poor -I was "poor" the majority of my life- but just how fragile financial standings can be. How much impact it can have in other ways. I mean, if we were going about our "regular" lives, being poor would be no big deal... but heading into trying to finish our home, and having to reconsider/replan what the end result will be? Trying to work in those things we thought we had another 20 years or so to plan for? Or just those "normal" day-to-day expenses we now have... ongoing therapy, mainly. And making it so that he's physically able to be in his own home.


It's not all Doom and Gloom, mind you. There are many, many bright things out there, we still laugh at stupid shit (his warped sense of humor is completely intact) and give the cute nurses The Eye... it's just... different, now. I try and maintain a positive face in the more public eye (like FaceGook) but sometimes I need to let a bit out, so my apologies if the posts here get dark every now and then.

Anyways, one of the positive things: As I mentioned, many of our friends have been generous with the dollars... but many live on a budget as well but still wanted to help, so we came up with the idea of a "benefit store" on Etsy. Enter Charlie's Spot. A place filled with the art of many different folks, 100% of the proceeds of which will go towards his medical costs, as well as the renovation/reconfiguring/etc of our home to make it so that he can BE at home eventually.

I know not a lot of people read this blog any more -the dangers of getting lax with it for a while there- but if you DO read it, please share the link above, and encourage your readers to do the same! (and if you or they happen to be an artist, and are interested in donating to the shop, shoot me an email at and we can chat!)


  1. I read it, and I want you to set up a "donate" box on the side bar for those who want to simply donate,

    like me and Bruce and Don.

  2. Consider it done! Our friends had set one up for us a while back, but to be honest, it slipped my mind to add a tab!
    It's up on my blog page, just below the "About Me" space.
    And thank you.... the outpouring of support from friends near and far has been amazing!