Day of Change

A year ago today, our lives changed. I don't want to say for the worse, because that gives power to the stuff we've gone through, so I'll say that things just changed. Sure, it's a lot more serious now on many levels, but that's what life does/is sometimes.

What happened on this day was that our lives were irrevocably altered.  We discovered that we were mortal, that things could -and did- indeed happen to us. No amount of denial (trust me, I've tried) changes that. But along the way, I've discovered a lot. Some of it good, some of it less so. I've discovered the kindness of people who are practically strangers, in many regards. I've discovered the strengths within myself, as well as my weaknesses. I've discovered what love means in its purest form.

That first day, in the midst of it all, hearing the doctor say that Charlie would be somewhat akin to a vegetable for the remainder of his life... if he survived. Sitting there with him, holding his hand, doing inane things like turning on CNN for him (which I've always been annoyed by) even though he was unaware of his surroundings... seeing images in my head of our future. Feeding tubes, and colostomy bags. Unintelligible utterances. And knowing that no matter what, I would hold his hand , if only for my own assurance. Regardless of whether he knew I was there or not. Actually, in honesty, I think it was more for myself, the hand-holding. Feeling his palm against mine, closing my eyes, allowed me to pretend that none of it was real, that he was still the "strong one" in the relationship. The steadying factor. Hell, I still do it today.... take his hand in mine while we're practicing reading, or watching a movie, or whatever it is.... I take it, and I work his fingers into looseness and form them around mine and I pretend that the muscle contraction is him squeezing my hand back in a show of affection.

And at some point he will yawn (causing his upper arm to contract) or whatever, and he will be startled by our hands being intertwined because he hadn't felt it or noticed it before.

But that's not the point I was going towards. I was going towards what I thought our future would be. I'm easily derailed still, obviously. At that first point, I just didn't have a fucking clue. I suspect/suppose no one does in those situations. We're not trained for it, most of us. But we're slowly figuring it out, one day at a time.

Take a moment today and tell those in your life how much they mean to you, how much you love them, and remember how blessed you are even when things are challenging.

On Memories

As we were hanging out today talking, post-drywall removal, I brought up (via some tangential train of thought) Charlie maybe trying his hand at some painting. I brought this idea up in the past, and it was met with a lack of enthusiasm on his part, mainly because of the left-handed aspect. Today, he was all about it. This is something I'm glad to see, because he's always had a creative side, but hasn't always taken the time to explore it (outside of crazy costumes and theater and music and stained glass and.... okay, so maybe he's explored it). This is all well and good (and encouraging) while we're house-sitting, but when it's time to be back in our own -now quite limited- space, I'm going to have to figure out a scenario where he can work at. Good gods, will I have to share my studio table??? (NO. That will not happen. Allow me my selfish side.... but I'll figure out something)

On the flip side of things, I discovered something today that I didn't know previously. That I doubt anyone else knew either.That the stroke removed some of his memories. We were talking about someone we knew (a co-worker) down in Miami, and he kept saying/indicating he didn't know who they were. While this wasn't someone we were exceptionally close to, it also definitely wasn't someone that he would just forget. We worked together for a few months, he came to our house to work from daily, we went out to dinner a few times, etc. Somewhat jokingly, I said "oh, did the stroke make your memory so bad you can't remember him?" (because, honestly, we meet a lot of people via our community, and we're both horrible with names, which we both admit and acknowledge)... and his reply was a completely serious "yes." Talking with him further later indeed revealed that he doesn't recall Sam at all. Somewhat frightening, in many ways... and it also gets me curious. Given what I've learned about the brain over this last year, I know how specific (and weird) it can be, so I find myself wondering if it's some of that time period that's missing (if so, how much? Is sticking out hurricane Katrina still there? Meeting Dlish for the first time? Walking the back alley to the bodega on the corner? Watching MirrorMask?) Or... is the part of the brain that is having "issues" related to specific personalities? Facial memories, human interactions, that kind of thing. Like, he can remember what we did in Miami during our almost 2 years there, but the people we knew there are erased? Or maybe the "spot" in his brain that got kerwonkety is Sam Specific? Maybe Sam is the only missing element from that time period.

In some ways, I'm leery of asking more. I'm not sure I want to know if that time period is gone for him, or mostly gone, or partially gone.... because it was a special point in our lives together. Actually, that's completely untrue. The only reason I now regard it as "special" is because I worry about it being "gone" for him. In truth, it was a rather mundane point in time for us... living in the city-within a-city of Miami Lakes, enjoying all the multicultural aspects of that particular area... but nothing of note.

But now, because of all this, it *does* become special, something of note. However mundane and banal that time was in many regards... now it's somehow more important.

A reminder, I think, to never take those day-to-day moments for granted. When you're "just" sitting around, doing nothing. Some day, those "doing nothing" days, those moments of *life* may become very special to you. And sometimes those can be taken away from you.... so appreciate them while you're *in* them.

(Charlie in front of the giant tree that Katrina toppled, 2005)

Lik

I abraded my hand today

Grabbing on to a basketball post that had been shorn off. It didn't do much damage... just an abrasion, but a blood blister swelled in the midst of my palm.

Tonight, I tucked Charlie into bed, and complained briefly to him about the blister. I realized how silly it was for me to be complaining about this slight injury, while he has almost no use of his hand, cannot hold a pencil or a fork.

And he looked at me and said "but it hurts" and forgave me my.... no, understood... no, still felt for me that regardless of what his own physical state is, that my hand hurt.

Resolvulotions. Or something.

Okay. It's for real. I need to start utilizing this space more. Again. For real this time. I swear. Both for creative purposes, and for sanity.

So, yeah, first post of 2014!

We'll start with a Charlie update: In many regards he's progressing well. He's regained a lot of the usage of his leg and can get about fairly well as long as he has his cane. He's still quite slow, but he's coming along. Slowly. Like I totally win every race we have. With his arm, he's gotten a lot of flex back in his shoulder, though there's still very little in his elbow, and almost nothing in his hand. This is a normal progression, though, as usage returns in a pattern travelling downward (shoulder first, then elbow, then hand).

Language is still challenging him a LOT, and is the aspect he finds most frustrating. He does occasionally pop out with a full sentence (we'll say an average of one a week), and can come up with a lot of words on his own if given the time to do so. Cuss words come out quite quickly. Shocking, that. His reading, however, has improved dramatically, and this gives him hope. While he's still a long ways away from reading a book, he can work out many simple sentences with a minimum of assistance.

This is an aspect we work on for several hours a day... from the time we wake up when I ask him how he's doing, to having him say "I would like some coffee" to going over flashcards and various sentences repeatedly.

In a fit of complete and utter fucking insanity, I decided that the week before Christmas was the perfect time to hang drywall and repaint the living room. You know, just because sadomasochism is fun and all that. I'd kind of hoped to have it done by the time my parent's visit was over, but that didn't happen... tho it did give my father something to do while he was here so he didn't drive me (or my mother) crazy.  We finally finished it up about a week ago, and I got to paint it and hang up some art work! Love having a wall full of the work of friends!



One of the pluses of this project getting completed (except for the ceiling trim) is that I could move all the stuff back out of the studio room, where I'd stored it during the drywalling...  which means that after a several-week break, I can get back in the studio and get back to work. Here's a little sneak peek of a larger (about 4ft) piece I have in progress.

No more excuses, back to work beyotch.

As always, there are new(ish) items being added to the Charlie's Spot store, including a custom-built electric guitar by our friend Gwen using recycled barn wood from her barn, and some paintings by Jacqueline Myers-Cho. And, as always, feel free to spread the word about the shop and the reason for it!

The Lighter Side

Of artistic therapy, that is.

While I still intend to go forward with my painting plans, I decided as well to pick up working on dolls again. It's been a few years since I've worked on any, and I have to say I feel a renewed energy around them! (apparently others like them as well, since the first round of them sold out overnight. Yay!)

A mix of needle felting, beading (on some) and clay, somehow the name "Travelers" got stuck on them, they range in size from 8 to 12 inches, though I have plans for some larger ones at some point.

While these are all from the first round and sold out, others will be coming along soon! Have three finished completely, three more mostly finished, and five more sewn and stuffed.

When the next round is finished (hopefully early next week) they'll be able to be found at Charlie's Spot, along with a lot of other goodies from a variety of folks!

In other news, Charlie is progressing well in many ways. While he has yet to regain use of his lower arm and hand, he's able to get around quite well with the assistance of his cane. Right now his biggest obstacle is (still) the aphasia, his ability to find and use words. While I know this is fairy normal in the way stroke recovery progresses (The "Usual" in order of recovering: feet, legs, shoulder, lower arm, hand, speech)it remains the most challenging for both of us.

But, you know, one day at a time, one foot in front of the other.

Artistic Terror

I'm curious what people think about, what their experiences are, with "transformative art." Or whatever you want to call it. Art that comes from someplace else, and taps into shit, shit that may be unpleasant and difficult to deal with. I'm not speaking of "dark art" (though obviously that touches on the same realms at times).... but art that has the potential to bring one through a process of growing.

I doubt I'll be very good at explaining what exactly I mean, so maybe I should just speak in the literal sense.

When all this stuff with Charlie started, one of the ways I found of coping was to start painting again.... but not in a style that I have in the past, working mainly in abstracts. I busted open several rather large packages full of canvas (Plaza Arts was having a 70% off sale on gallery wrap canvas a while back, and I had stocked up) and just started having at it. Some are small 6x6 inches, some are large 4ftx5ft... nothing really tied them together, though, other than the fact that they were abstracts.

Tonight, after a rather difficult few days of communication and sadness on both of our parts, I was "writing in my head", kind of working out some written stuff (before putting it to paper) exploring what all this has been like, this whole fucked up journey, and I realized that *that* may be the thing that ties them together.

Words. Threads.

I want to incorporate a continuous piece of written work into the paintings, and tie them together. Literally. Bringing both fiber work and written work into (on to?) the canvas pieces. Incorporating not just *my* words, but the pages and pages that we've filled already of Charlie practicing his ABC's, his name, his 123's... the random scratchings and scrawlings he's made in his attempts to get across what it is he needs and/or wants at any given time.

Quite frankly, the idea of undertaking such a project is daunting in more than one sense... how do you tie together 20 or so paintings with fabric/yarn/etc? How do you incorporate photographs and medical charts/exams? How do you include those spiral-bound notepad scribbles? Those attempts at communication?

It's also daunting in the emotional sense. Possibly more so. I can work my way around physical shit, one way or another, but plumbing the mental depths of all of this seems risky, and honestly quite frightening... but possibly what I need to do. I haven't processed any of it in a Big Way since it happened. I've talked here and there, I've posted updates on the FaceGook, I've done this, I've done that, but I haven't just embraced and allowed myself to go *there* fully. I've had my moments of "near freak out" but haven't... you know... freaked out. And I'm scared of a project of this sort allowing that mental collapse to occur.

Anger Issues

Woke up angry at the universe today. Well, technically, I didn't wake up that way, as I went to sleep that way. Apologies for the grouchiness, but I need to let it out.

Angry at our ex-employers. Those who promised us "You're going to be able to build five houses by the time we're done" and spoke of large payouts at the end to make it all worthwhile... what they really meant was "Oh, actually you'll just be unemployed." Angry that they managed to build their mini-mansions, while Charlie spent the last ten years not even really able to enjoy his own unfinished home, because he was on the road making sure their business ran as smoothly as could be, that they could enjoy their Go Big lifestyles.

Angry that I don't understand completely what the future holds for us. I see one place that about 40% of stroke survivors have another stroke within 5 years... and then that the average lifespan for a stroke survivor is 7.5 years... but I don't get how such factors as age play into it (I would suppose that since most stroke victims are older, that would effect the outcomes/probabilities... what about for younger folk?) How does the fact that the clot/blockage is still there in Charlie's head play into it?

Angry that we were supposed to be starting our lives right now... focusing on getting things going for *US* again. That two-three weeks ago I was supposed to be leaving my employment, so that my new "job" could be seeing to it that our home was finished, so that he could come home and stay off the road for good next year... to actually enjoy the place he wanted to be, to call home.

Angry that there are days like yesterday, when he's hurting, having headaches, and we were unsure if it's simply due to muscle tension and ongoing eye strain, or more significant.... or this morning, when he seems more confused/lethargic.

Angry that he is the person I have chosen to spend my life with, to grow old with... that we were going to look out for one another. Which is what we're doing now, but it's years earlier than we thought. I understand that many people face these same things, for many different reasons, but that doesn't make it any easier.

Angry that we're a day away from our 16th anniversary, and I have to remind him on a daily basis what my name is.


Charlie's Spot