It's almost what now?

So, y'all. It's almost March. 

I honestly don't know how I always forget that February is so short. Memory issues notwithstanding, I've always been surprised by February. As far as I can figure, on, I believe, April 2, I will have been working on this blog for a year.

April also marks the 4 year anniversary of my brain hemorrhage. That's pretty amazing, when I think about it. 

Since my concept of time is all messed up from that same event, the fact that it's been nearly 4 years seems pretty weird. I don't have much of a distance between getting home in September of 2019 and now. I realize how odd that seems. We're definitely a society governed by time. We set alarms to wake up. We measure ages of people, ages of relationships, ages of food, and the ages of ideas.

Einstein said time was relative, and he's right. I don't think we really understand how relative time is until we're adults. Then, as time is just flying by you, leaving nothing but a cloud of dusty memories, you remember how slowly everything went when you were a kid. It was just this endless waiting game; waiting for school to start, waiting to ride the bus, waiting for lunch, waiting to go home and so on, throughout your young life. 

Then you wait to graduate and go out on your own or to college, you wait to find the person you want to spend your life with, or at the very least the next year. Then you may wait to get married, wait to have or adopt kids and then...

Then everything speeds up. Suddenly the years just fly by. You have a baby and then one day you suddenly realize you have an actual child. Then that child becomes more and more independent, and then you have an empty nest. They move away and maybe get married and have kids of their own and you're left spinning, feeling like you're dodging cars on a super fast highway, never able to catch your breath before the next one comes and passes you by. 

That's how it seemed to me before, too. 

But now, well...

My eldest moved out of the house at 18, before I got home from the hospital and rehab. My youngest, now 12, is still with us at home, of course. He swears he doesn't want to move out ever, but I know that he eventually will. 

Speaking of my youngest, he was 8 when I had the hemorrhage. He was in 3rd grade, I think. That's what my quick computation came up with, anyway. I know that all parents say time flies, but with no solid concept of the time passing since then, I find it startling today. Looking at him and seeing him almost a full fledged teenager when it literally feels like he was only 9 six months ago. 

It's a real case of where did the time go. 

There are times that stand out in my memory, still, even with it being as messed up as it is. I have a clear memory of my eldest son taking me for a drive in his new-to-him Mustang convertible. It was in the summer. I have no concept of which year. I remember having a heart breaking phone call when my husband's grandmother died in late 2019, though I have no idea of the month in which it took place. I even vaguely remember a trip my husband took us on for our belated anniversary, which I think happened within a month of me coming home, but now that I think about it, I think I might have still been in rehab and went out on a weekend pass type of thing.

But I'm not sure. I'm not sure at all. 

Some things I only remember because someone told me about it. Some things I remember very clearly and they never took place. Some things I remember wrong, even.

This is, as far as I know, quite common, particularly with brain damage thrown into the mix. It's still unnerving, as I imagine you understand. 

In my former life, I was an in-home caregiver for the elderly. One of my clients, who had Alzheimer's, had a book she would periodically pull off the shelf to show people. It was called "Remember I Can't Remember," and dealt with how to talk to people with dementia. She would hold it out to you and say "Have you read this? This is a very good book."

She did this when she felt frustrated with her life. That was my interpretation of it, anyway. She was upset and just wanted people to know how to talk to her. 

I think about her, and that book, quite a bit. We have more in common than not, at this point. The concept of the book is something I try to let people know when I get frustrated with how life is, or how I'm interpreted. 

Saying "remember" to a person with memory issues is problematic. Memory is what helps someone remember, of course. If your memory is faulty, or completely broken, "remember" isn't going to make that better. Some people might call it triggering. To me it's just a sad word to hear, as I may remember and I may not. There is no specific how or why, it's not selective. It's just a fact: Roses are red, the sky is blue, fire is hot, my memory sucks. It just is. 

Grace is a huge concept in my life. I have to give it to myself, I have to give it to others, and I need to get it from most everyone I talk to. In this format, I can review what I've written, though I may have forgotten I wrote it at all, and see where I was going with a post. Even my blog is capable of affording me grace.

Losing access to parts of your brain is an ever-evolving process of questioning, understanding and forgiving yourself. All of us need support through this process. As we grow more comfortable with ourselves and our abilities, grace gets easier to afford, and life gets easier to live.

Here we are again, for the first time for the second time...

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.