I'm miffed today.
I wanted to write a post last week, but was stymied by technical difficulties. My computer wouldn't recognize any internet connections.
Got that figured out, and now it doesn't like *this* internet connection.
The twit.
So, here I am, once more typing up a post on my phone.
Truly not ideal, but whatever.
Anyhow, I decided that I was, once and for all, going to ask my GP what my brain injury was called. She assured me ( I think for the nth time) that it does indeed not have a name. So, I've decided to call it Ralph.
I needed to call it something. I honestly ask myself "omg why am I so dizzy" about 7 days a week. I know damn well why. But it really helps to be able to say "oh, that's because of Ralph."
See? Having something to blame makes things easier, and boy do I need something to be easier in my life.
So, having a name for things is important, if for no other reason than to get me out of whatever rabbit hole I've gone down on whatever day. It's something we can do, as brain injury survivors. It can be very easy, depending on the brain injury, to get stuck on things and end up lost on them for a few weeks, months, or even years at a time.
It's most definitely not done on purpose. It might even annoy us as much as it annoys you. I mean, not for me, because I have a tendency to forget things that bother me, at least I forget them in recent memory. I know I've been trying to figure out what the hell happened to me for three years. Of course, that still doesn't have a name other than "spontaneous intraventricular brain hemorrhage."
There is still no cause known. We know something exploded on the right side of my brain. I've kind of come up with whatever it was exploding being near my right Temporal Lobe, but really, we don't know. We know the right ventricle filled first. That's really all we've got, and that's apparently partially thanks to a realtime CT scan.
Go me.
It's hard to have a major health event when no one can figure out the cause. You don't want to think it could ever happen again, but there's no real way to guard against it. All you can really think is that maybe if it happens again, you won't be so lucky.
Yes, I said lucky. Most people who have what I had die. It's in the statistics. That in and of itself is a very scary thing.
I also don't want to go through recovery again. It was, and is, a lot of work. I just put my head down and do it, for the most part. I mean, it's this or languish, you get me? I'm not ready to languish just yet. I feel that I have things left to do.
Regardless of that, though, I do tend to need a lot of grace from people. Those who can give me that are still in my life. Those who can't? Well, kind of the same thing as me forgetting about what I did yesterday, they just fade out of my memory.
Maybe that sounds harsh, but reality can be harsh sometimes. It's been pretty harsh to me, too. Reality is no easy thing to deal with. We all have our dream world's, don't we? "If this was only happening I'd feel better about everything" or "if only I had this thing, my whole life would change."
Those things that we think are seldom true. My mom always said "if wishes were horses then beggars would ride." A comforting thought on the surface isn't it? If we our wishes came true, then we'd be better off.
Would we though?
Just for a second, let's look at that Momism again. If, indeed, wishes were horses, beggars could ride them for sure. But they'd also have to feed them, take care of their medical treatment, have to find a place to stable them and more.
What beggar has that amount of money?
Do we have the kind of fortitude it would take to win the lottery? I mean, sure, it would be nice to have money to pay off our debt all at once, buy a house, a new car or two or ten. But then what? Another saying is that money can't buy happiness, and I believe that. Have you ever met a person with a ton of money? Money to burn, one might even say? How were they doing? Did they seem happy?
I've never met one person with a lot of extra money lying around who didn't have at least one problem in their lives. If there's one thing money can buy, actually, it's problems.
There's a rap song for that. Notorious BIG's Mo Money, Mo Problems.
It doesn't fix everything. In fact, it can make things harder.
I'm not saying we all should just be happily living in poverty, but we do have to live within our means, don't we?
You can translate that to living with a disability pretty easily. There's no real need to live in a way that isn't healthy, but we do have to live within our disabilities--in other words, within our physical and mental means.
Reality based living hit me like a semi almost four years ago now. I was living, doing my job, loving my job, actually. I was trying to do all of the parental things, work full time, be a good wife, an amateur actor and enjoy life. That train hit a hell of a snag, though.
The results aren't all bad. I have more to be happy about than I have to be depressed about. I have more of a pleasant life than I did before. I no longer wake up on some mornings thinking to myself, "if I could just be put in the hospital for a couple of weeks or so, maybe I wouldn't feel so overwhelmed." Sure, I'm not doing much of public note, really, but what I am doing has much more meaning.
This is not in an "I almost died" kind of way, either. I am just able to enjoy more meaningful experiences in life now.
I don't imagine people thinking about the lives of disabled people thought about that part, much. Sure, we can't do some things, but there are a lot of things we can do, living within our means.
I don't mean we can't have dreams, goals and ambitions. Not a single person I've met since this whole thing began thinks that. Some of us may deal with these thoughts differently than others, but it's all part of the journey.
Ack. That sounds super cheesy.
What I mean is that we all have had to come to terms with our limitations. It can take some of us longer than others, of course. But, we are living these lives, after all. We see what our limitations are on a daily basis.
One thing I have found us to have in common is that we really chafe against the limits others put on us. The reason for this is the same as the reason for coming to terms with our limitations: we live with them every day.
One thing I remember hearing during my early recovery was a man's voice saying "No drinking and no driving."
That man's voice, ladies and gentlemen, was my husband. For the longest time, I thought it was a doctor. As I've said, it was just the mouthpiece of the doctor, in this case, my husband.
He was quite right. And being that I was in acute rehab at the time, I didn't fight it. Now though, I'm almost ready to get my driver's permit again, as I really have to learn how to operate a car safely all over again.
This all shows that our limitations can change. Our abilities can change, even if our disabilities don't. Our lives can change, all over again, but for different reasons this time. For better reasons.
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