September 17, 2017


I've been doing a lot of thinking lately. Now usually, thinking turns into over-thinking, which turns into obsessing, followed by the burn-out. Isn't it so lovely that I have finally begun to understand myself? Naturally, this "Ah-Ha" moment will trigger more reflection and THUS THE CYCLE BEGINS. Or ends. Not really sure when something like that starts, and now I have THAT thought thrown into the mix. I tell you what...

Anyhow, I have been doing a lot of thinking about myself and how my life is going to affect my children in the future. I think that this sort of personal reflection always follows the death of a loved one. You remember them, and you can almost reach out and touch those few critical interactions that tied and bound your relationship together. As I've thought about Kathy, I've been remembering her physical limitations, especially these last few years. And it's made me wonder, what kind of grandmother will I get to be?

Most of the time, I don't pay much attention to my disease. But then, there is a today.

Today was Saturday. (Or I guess it's technically Sunday now, but I haven't been to bed, so it doesn't count.) Today was Install Shower Wall Tile Day. Fifteen years ago, Troy and I could tile anything. He worked as an apprentice tiler, and I was his trusty sidekick. I have laid thousands and thousands of square feet of tile. Troy's laid even more. Now, wall tile is tricky. Wall tile is even more tricky when the bathroom wall is in the wrong place, and there is now an inch and three quarters shelf on the back end of the tub. However, we found a solution, everything is ship shape, we are READY TO BEGIN.

Now, Troy and I are a pretty good team. I install ground zero, make sure that first row of tile is nice and level. I mark the tiles, Troy cuts the tiles, I install the first row or two, and then we switch. Why the switch? Troy is better with the trowel, whereas I am better with a tile saw. Unfortunately, we are working on the basement bathroom. Which means there is a lot of up and down the stairs. And yes, I have four kids who should be helping. But you know what? They hooked up a wagon to the back of the riding mower, and were cruising the streets, giving kids rides. So I tromped up and down the stairs until my tromp done broke. So we had to switch jobs again. And Troy is a trooper. He just WORKS. Guys, if there is ONE THING I want my kids to learn from their dad, it is persistence. Persistence and hard work pay off eventually; even if it's just for yourself! Knowing that you put forth your best effort is all that matters. Anyways.

We have again switched jobs. I am now marking and installing tiles, Troy is running up and down stairs to cut and deliver. Children are still MIA. Guys, today KILLED ME DEAD. My vision started to go wonky, accompanied by the glorious metallic tang in my mouth. My spasms are freaking crazy, and I am losing my words.

And because I have lost my words, and because I can't explain how I need a tile cut, and I'm trying to show you, but you're not understanding, because I make NO SENSE. And Troy is patiently waiting for me. And he's trying to help me find the words to explain. And he's telling me, "Honey, it's okay. We'll figure it out." And it's a goddamn piece of tile.

And I hate it.

And I hate that when we were helping to go thru Kathy's things, that there were boxes and boxes of medical supplies and equipment. There were dozens of bottles of pills and tonics. And I knew what they all were. And I was grateful that I could take them home with me, because I'm an expensive person, with expensive habits. And I hate that I know what she felt like before she died; that I know exactly where she was hurting, and how much.

And as I was staring into my husband's face, and he was looking up at me with his signature wry grin, just happy that I was helping, I just... I don't know. It's like, I have a rush of images and I'm just following along life's little thread, and I get flashes of what life might be. At what point do I stop having "relapses" and just have lapses?

I mean, even this house, this wonderful, glorious, house, was picked out specifically because it's disabillity friendly, and there's enough room for me to put in a ramp. I mean, who the hell goes house shopping thinking, Gosh! this door is super wide! It is definitely ADA compliant. And Whoa Over There! That front walkway is PERFECT for converting stairs to ramps!

So yeah, that's me. Tiling a bathroom, pushing way past my limits, knowing full well that I'm already spiraling down into the black abyss that is Caroline's basic functionality as a human being. And then I think, when my kids grow up, and they get married, and have babies, will I be able to tell them I love them? Because I'm losing my words. And if I tell them a million times between now and then, will it be enough? Will they remember? Will they KNOW that even though I'm lost inside, and that I'm trapped in my body, that I will always be there to anchor them? I just need them to know.