I've talked in other posts about how being a caregiver is isolating. There are reasons for this, people. Many, many reasons. My life (oy vey, right?), my life is a series of balancing acts and carefully constructed formulas that make up this elaborate structure of string and duct tape. And on this string and duct tape is me, walking a tightrope. Of string. And duct tape. Did you catch that part? I'm making a point here. Some days, that tightrope stretches into endless miles. Rickety, rickety miles.
Now, let me take a brief interlude from my obviously fascinating story of string and duct tape to make another point. Life with my husband can be challenging. Life with me can be challenging. I am, in no way, burdened by him or his disabilities. In fact, our lives are pretty fucking awesome, aside from my string and duct tape balancing act. I am not a martyr for being a caregiver to him, I'm just....well....being a partner. Like you do. I have many feels for this man and he feels back. I kind of love the jerk. His disabilities can make navigating life different and sometimes, challenging, but it doesn't mean we have a bad life. I suppose this is a subject for another post, though, right?
Okay, away from all the feels. Gross. Go take a shower now, you're covered in sticky feelings.
Back? Alright.
So. String and duct tape. We construct our lives to make things as easy as possible for us, for our kids, and for well, everyone, really. I don't start my day with a plan, I just make this shit up as I go. One of the constructs of our lives lies in our interaction with other people. Here's where it gets really tricky, guys. People are well, people and they have feels and thoughts, too. Novel idea. I'm a right genius. HOWEVER, some (okay, a lot) of these feels and ideas don't always mesh with our feels and ideas. That's not always people's fault. Some of it is this insular kind of attitude that we've had to adopt for self-preservation.
Along the way, I've come to the conclusion that I only have so many pieces of me that I can distribute to the general population. The biggest part of me is reserved for family only. Sorry. Anyway, that piece is pretty damn big. Like Australia and Ron Jeremy big. When we talk about math, which I hate, that doesn't leave much left. So, then, I need a piece for school, because I am trying to better myself, or something. I need a piece for my dogs, because really, they are family, but a smaller part of family. I, probably, need a piece in there for myself. Not always a high priority, but I try. See how the pieces are dwindling? Not much left.
So, let's talk about family. Family is my husband, my kids, and the group of folks that aren't blood-related, but might as well be. There are people who are blood related, who will never fold into this equation and who will never have a piece of me, well, us.
That's where boundaries come in. See that segue-way? I'm clever, right? My boundaries are marked by bright yellow caution tape, folks. Now, in the past, they were like a weak sharpie. Like one of those that's sat in the sun all day? That kind. I sucked at making those fuckers and, as a natural result, I burnt out. In a flaming, glittering, spectacular way. I overextended my pieces. You can only recycle them so many times, doncha know. I gave. A lot. And my boundaries faded more and more, as crappy sharpie does when it's walked on. My pieces? They shattered. I had nothing to give to my family, my friends or myself. So, after I cried, wailed, and pounded my fists on the pavement in a glorious tantrum, I broke out the caution tape.
I tucked my trust way the fuck up inside of me. Much like when a porn star loses a butt plug, that shit doesn't come out without surgical intervention. Now, I approach with small steps. My pieces stay in the places they're designated until I'm ready to call one in and hand it out and when it comes to the welfare of my family? I'm a bitch. It's okay. You can say it. I'm okay with it. I hold tightly to the very little control I have in our lives and I don't give it up.
You see, I had to come to terms with the fact that I can't control when my husband gets sick and I can't fix it, either. His disabilities are life limiting and they're progressive. What this means for the future, I don't really know. I know that I'll, very likely, outlive him. I know that his mobility issues will worsen and he'll probably need a wheelchair, at some point. I know that his brain injury will get worse and he, and I, will lose more and more pieces of his personality and his memories. I can't control all of that. I can control how we live now. I can choose to be happy and to soak up all the time I can, now. Part of being happy? Is not trying to make people fit in our lives that don't.
So. Am I a bitch? Yes. I am. I'm extremely difficult to get to know and to have as a friend. I drop out of people's lives and pop back in, randomly. Mostly because there are just times when I need to unplug and to focus singularly on my family and me. I don't trust very easily. Which, sucks for a lot of people who love me. I'm sorry, but know that I'll get there. Someday.
My boundaries, man. They're an asshole.
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