After concussion – I’m not stupid, you just think I am

This is an extension of the piece I wrote years ago (January, 2011), called “After concussion – you’re not stupid, it just feels that way“. I’m writing this after seeing a physiatrist for a follow-up appointment regarding neck & shoulder pain/stiffness and tingling and weakness in my left hand and arm. They had given me a prescription for a physical therapist to get some help, but I never got PT help, because:

1. Carving time out of my schedule is a challenge. I already have two standing appointments after work, each week, and a third (and sometimes a fourth) usually shows up, which doesn’t leave me enough time to rest.
2. The one PT who I am interested in seeing has an office a good hour from my home, which not only makes it tough to find the time, but it also threatens to wipe out any benefits I get from them, while I’m driving home.
3. It’s hard for me to explain what’s going on with me, because I get turned around – especially when I’m tired, and my symptoms shift and change. It’s hard for me to A) remember from one day to the next how I’ve been feeling, B) track how I’m feeling without it being disruptive, and C) put into words the impact of my issues. Not being able to explain — especially to people who do not know me, and who do not know how to parse out all the information in a meaningful way… it’s just a waste of time.
4. The PTs I’ve worked with in the past have had no clue (I mean, NO CLUE) what to do with me, when they found out about my head and neck injuries. They either treated me like I was mentally deficient, or they got so in a tizzy about my different injuries and whole host of aches and pains and issues, that they were no use to me at all. They were so obsessed with being careful, that they achieved nothing at all.And what they showed me was stuff I already knew how to do.

So, no, I didn’t follow up with a PT, and I told the doctor a few of the points above. I should have written it down, but I didn’t get to it.

The doc was a little taken aback, probably because I had seemed so compliant and cooperative when we’d met. I explained to them that I hadn’t had good experiences with PTs, and anyway, I thought I’d try to fix the issue myself with some light exercises… which has worked. Strengthening my trapezius muscles in a specific way and also stretching my neck has resolved my issues. That, and being determined to not get hooked into a healthcare system that is A) clueless about me, and B) too impatient to be of much help to me.

In the end, we parted ways with them telling me that I was going to be fine and I guess trying to be encouraging. That’s fine, but it was also a bit infuriating, because (cover your ears and/or close your eyes) Jesus Fucking Christ They Treated Me Like A Goddamned Simple-Minded Idiot. They talked slowly and said “Good job!” a lot, like I was a goddamned puppy learning a new trick. They were complementary towards me for taking things into my own hands and being pro-active, but the way they did it seemed forced, like they were making an extra effort to accommodate my “disability”.

I do not have a disability. I have a history of injuries that have changed the ways I process information, and just because I’m struggling to find the right words — “X-ray”… “arthritis”… “traps” — doesn’t mean I’m not parsing all the information as well as the next person. My brain works differently — not worse. But every time I stopped to find a word or I had to work at putting thoughts into a sentence, they got a little more “accommodating” and remedial with the way they interacted with me. The worst thing was when I started to tear up over explaining why it’s hard for me to get help.When I get angry or frustrated, I tend to cry. And you’re right, if you’re thinking “How inconvenient… How infuriating.”  It is. And that makes me even more prone to tears. Arrrrgggghhhh!!!!! &(*$^%#*!!!!

I’m sure they were trying to be compassionate and empathetic and whatever, but their total affect came across like they had to talk more slowly and put ideas into small words and lower their communication level for the simpleton in the room (that would be me). It seemed like they thought that I was less intelligent and less capable of processing information due to my history of TBI, so they had to talk to me like a 5th grader. Plus, they kept saying that everything that’s happening to me, is just because of my getting older. They said that a lot, last time I saw them. And they kept saying it with this air of “professional resignation”, like that’s just how it is, and I was a mentally deficient person who was getting all paranoid with bad thought habits, thanks to my history of head injury.

The thing is, my 50 years on the planet might be a factor, but my family members regularly live well into their 90s and  past 100, so I’ve got another 50 years ahead of me. At least. It’s medically possible now to live till 120, so we’re probably looking at 150 being possible, by the time I near that. That’s my plan, and all this talk about “well, that’s just what happens when you get old” is not helpful to my plan. It’s just a bit resigned. Pessimistic. Cynical. None of the things that actually help me… or are consistent with my own attitude towards life and living it to its fullest.

Now, if I were going to see this doctor regularly for an extended period of time, I could do something about this. They would get to know me. They would change their mind about what “has” to happen as we grow older. They would realize that they don’t have to give me me special treatment – they just need to have a little patience while my brain coughs up the right word. And I’d be able to educate them about the ways in which I am strong – so strong – instead of just what they see with the verbal issues.

But I’m never going to see them again. I can deal with my issues on my own. I don’t need to be constantly told to adjust my expectations down, thanks to the inevitable march of time. And call me crazy, but adding an hour of driving, breaking up my work day, and spending $40 a pop to go see someone who is just going to talk down to me, no matter how helpful they’re trying to be… seems like a waste of time. It was a great lesson to learn — next time I’m not going to bother going back again, if I’m actually not having any more issues. Consider the lesson learned.

It’s best that I just steer clear.

And while I’ll never have to deal with them again, most likely, this is the thing that makes me NUTS about people and their cognitive prejudices. If you’ve got difficulties putting words together verbally, people assume you’re less intelligent or are “slow”. If you have little tics or fidgets, they think there’s something wrong with you. If you don’t answer them immediately with a definitive reply, they take you for weak-minded and indecisive, and they sometimes get angry to boot. If you get tired and distracted and lose track of what they’re talking about, they think you’re not interested in what they’re saying, and they get angry. If you can’t remember things that happened only a few minutes ago, they think you’ve got Alzheimer’s or some other degenerative condition that’s making you lose your mind, and they start “helping” you remember things.

Doctors are just as susceptible. They are human, after all, and medical education doesn’t always impart insight or interpersonal clue-fulness. Maybe this physiatrist has seen other folks with concussion / TBI, and they needed the extra help. But it’s really demeaning to treat people in that way — like children, or developmentally delayed “dearies” who just need love and understanding – not cold, hard facts.

For as long as I can remember, my parents have treated me like I was “special”. Like my inability to remember things marked me as less-than. Like my losing track of things and getting lost with directions meant I was functionally impaired.

I am not an idiot. I am not simple-minded. I am not intellectually impaired.

I have a handful of issues that get a lot worse when I am tired, in unfamiliar conditions, or under pressure. I have a handful of issues that I have learned to work around. I don’t need anyone’s condescension or “help”. I just need people to cut me a break, be polite, and treat me professionally. I need them to treat me like the adult I am, and with the respect I deserve.

Is that so much to ask?

Woke up in a funk, then I decided to do things a little differently

It’s a choice

So, I woke up at 6, after getting, oh, about 6-1/2 hours of sleep. Not great. I’m still thrown off by the overnight work on Fri/Sat night. Ugh.

And I had to get some things done, that I had neglected for … oh, months.

And I was in a funk about my spouse always snapping at my heels about every little thing. It’s like living with a bee constantly buzzing around my head, sometimes. You know, how you’re sitting there, relaxing and enjoying a sandwich, and then this bee shows up and starts buzzing around you, trying to get a bite of your sandwich, and you don’t want to get stung, but you can’t get rid of the bee… and you try to ignore it, and you try to make space for it, and you try to not be bothered… but it’s still there, buzzing around… buzzing… buzzing…

That’s how it was, pretty much all weekend with my spouse. Aside from a few times when we were able to just sit and be and enjoy each other’s company, it was pretty much of a drain. Constant complaining. Constant worrying. Constant coming up with more things that need to be done — that I need to do.

Holy crap, was it tiresome. And all I wanted to do, was get away. Just leave. Put all this behind me. The constant complaining, the moaning, the worrying, the fretting. Oh my God, when will it ever end?

And it occurs to me that I really don’t want to live this way. I can’t spend the next 25 years of my life marinating in someone else’s misery. No way, no how. Every time my spouse starts to complain and bitch and get all dramatic, it has the same effect on me that someone lighting up a cigarette does. I used to smoke, 25 years ago. I know and hang out with smokers. But I can’t stand the smell of cigarettes, when I can’t get away from them. And that’s what it’s like, every time my spouse starts to complain and find fault and pick at every little thing.

Like they’re chain-smoking. And I’m getting a lung full of 2nd-hand smoke.

I think I’ll buy a pack of cigarettes, and every time they start up, I’ll just light one. They hate cigarette smoke — about as much as I hate their constant complaining and whining and blaming. So, to give them a taste of what it’s like for me, I’ll step outside and light up a cigarette whenever they start to complain and find fault and vent — basically throwing up emotionally all over me.

There’s a reason I have a constant headache. And it generally gets worse, whenever my spouse is around.

I think I need a shield. Or full body armor.

So, this morning as I was trying to get things done — and my spouse was yelling at me for being to loud and waking them up (I get clumsy when I’m tired and out of it, and I bump around a lot), the thought occurred to me that I could just walk away. I don’t have to stay in this situation. I could carry on elsewhere, on my own, and I could be very happy alone. I’m the one who does most of the work in this relationship; they’re pretty much freeloading on me. So, stepping away and just living my life without someone draining the life force from me would be a welcome change.

It would be so nice to just have some peace. It really would. And I’m at the point now, with my birthday just around the corner, where I can’t figure out why I stay around, to get dished the same helping of neediness and negativity, every waking hour.

I’m not staying because I have to. I’ve stayed for 24 years because I’ve wanted to. But I want to less and less, with each passing day.

I do all the work, and they sit back and enjoy the ride.

Am I missing out on all the good that’s possible for me, because of some misguided loyalty to a person who just uses me, day in and day out, and then tries to make up for it by setting up a nice birthday for me? It doesn’t make sense.

So, what do I do?

I don’t really want to leave. It crosses my mind. I don’t have a spouse. I have a dependent. A ward. And I’m sick and tired of it.

Then again, this is a terrible time to make any decisions. My birthday is right around the corner, and that’s messing with my head. I also want to keep things stable for the next while and enjoy my time away, next weekend. My work projects are coming together, and that’s feeling good. I’ve also realized that I really don’t want to leave my current job. If the people I’m talking to actually offer me a buttload of money and benefits that make it all worth it, of course I’ll consider it. I might even do it. But I don’t have to leave. I’m good where I am, and I can stay here for the duration of my contract till the end of next March and be good with it.

The main thing is, I need to adjust my own attitude and how I relate to the rest of the world. If my spouse is miserable, that’s their business, not mine. I don’t have to get dragged down by it, and I don’t have to let myself be tainted by their negativity. I can live in a completely different world and leave them to theirs, without needing to turn our lives upside-down. If I did go, where would I go? What would I do? I like where I live, and unless I moved out of the country, I can’t think of anywhere else I’d rather live.

So, enough of the burden that I take on, myself. Enough of that. I have a choice about how I will live my life and think about things. And I choose to be happy and stay the course. If my spouse chooses to join me, then fine. But I’m not choosing to join them in their abject misery. I know what it’s about — it’s because of their upbringing. I did not have that degree of abuse and neglect in my life as a child, so why should I experience life the same way they do? We both know how to deal with panic/anxiety — why should I suffer because I’m the only one who’s making the effort to use the tools?

I work hard to keep positive and  productive, but they can’t seem to be bothered.

It’s not fair to me. And it’s not realistic at all.

Happiness is a choice, and today it’s my choice. My spouse can do what they please, and they can live as they choose. It’s literally killing them in front of me, which is incredibly painful to watch. (And it’s probably a big driver behind me wanting to leave – so I don’t have to watch them in the final stages of their mental/physical breakdown/demise.)

As for me… I’m going to live.

End of subject.

Onward.

Letting things just be

You gotta know what’s what – for real

I had a long weekend, with a lot of work of all kinds. I did some work for my day-job, and I also worked with my spouse to help them with a business trip on Saturday. Then I spent most of Sunday with a house guest, who stayed until 5 p.m.

I typically prefer to have time to myself on the weekends – to be alone and undisturbed by others. I had a lot to do, and interacting with other people takes time. It takes a lot of time. And energy. And attention I’d rather put somewhere else.

One of the things that makes interacting with other people difficult for me, is that I really expend a lot of energy when I’m interacting with them. I really make an effort to see their points of view and to just let them be who and what they are. It’s a fair amount of work for me, because most of the things I see and hear and watch people doing, saying, choosing, really conflicts with what I would do, say, or choose.

But it’s their choice and it’s their life. Even if I can see that their deeds, words, and choices are going to lead them down an unfortunate path, I have to stand back and let them do it. It’s not up to me, to save them. Or even to give them a clue about what’s ahead. That’s for them to find out. If I didn’t care so much about the sufferings of others, my life might be considerably easier.

But I do care. And it is extremely hard to watch people do the things they do.

Who am I to take them to task, though? Who am I to step in and draw their attention to things? We all have to walk our own paths, and we all have to make our own mistakes.

I just don’t much care for being pulled into the foolishness that they propagate. When the people doing the ill-advised things are in charge, and they are affecting the lives of countless others on a very large scale, well, that’s a problem. Especially if one of those people is me.

So, in that case, standing by and doing nothing, saying nothing, never speaking out and never raising any questions, is negligent on my part. We all have responsibility for certain things that happen around us. The real puzzle is knowing which of those things we are complicit with, and choosing the right path to take.

For me, the right path is (ultimately) off into the sunset — toward the horizon — and away from the situation where I now am. There is so much more that I can be doing with my skills and abilities, and nobody I work with is actually mature and experienced enough to recognize that. So, I’m limited by their lack of vision and experience.

It really does boil down to experience. And there’s not a damn’ thing I can do about that.

So, in the spirit of picking my battles, I’m working on stepping back and letting things be. I need to observe them and figure out which things I want to dive into, and which things I want to leave alone. A whole lot of drama can be alleviated by just being still and letting it settle down. Then the drama dissipates. The swirling mud sinks to the bottom of the pool, and we can get clear again.

The main thing is to just remain calm and allow it to be. Just be.

And in those times when I let things get the better of me, and all the dust and muck gets kicked up and swirled into a muddy mess, I need to just step back, step away, and let myself settle down… so I can stop stirring the pot, myself.

Half the time, the pot doesn’t need to be stirred, anyway, and all the drama and kerfluffle has nothing to do with what’s actually going on at the moment. It has to do with everything else in the world that people are experiencing — the imaginary past, the elusive present, the anticipated future. And it has nothing to do with reality. At all. Things would be so much simpler, if we could just let them be, but no… people seem to be hard-wired to dive head-first into drama.

Of course, I know exactly how that works. For sure. It’s a mix of biochemistry, neurology, and the combination of fear, anxiety, fatigue, pressure, stress… that whole big mess o’ things that — for some reason — we seem to think life has to be.

It doesn’t. We’re just trained that way. Everything from our media to our interpersonal relationships, are marinated in drama. It wakes us up. It makes us feel alive. It makes us feel important, or right, or righteous, or powerful. It makes us feel as though we alone know “what’s what” in the world, and it’s comforting that way.

But ultimately, all that amounts to is drama. Biochemistry. Neurology. Habit.

It’s not real.

And that’s the thing I need to keep in mind and remember. I did an okay job of remembering it this weekend, when I started to get all OCD over my work situation and started to get all worked up over scenarios I was imagining. The imaginary scenarios were both historical (they had happened, and I’d decided what they were about and what they meant) as well as anticipated (they hadn’t yet happened, and I was pretty sure they would). And I was getting really worked up over them, while I was trying to fall asleep last night.

But I got a hold of it and remembered that I was frittering away precious time on what was basically an illusion — something I made up in my mind about what was happening/going to happen, and what it all meant — and there was not much reality to it, other than the sensations that were coursing through my veins and making my heart rate go nuts. It wasn’t serving any purpose and it wasn’t helping me at all.

So, I stopped. I just let it be. I reminded myself that the only thing that was giving any of it any reality, was me and my conviction that I knew what was what.

Silly.

Once I stopped, and I got myself calmed down, I went right to sleep. Which is what I was needing to begin with.

And that’s progress.

It’s also progress, that I’m seeing more and more clearly each day, just now made-up our world really is. We invent all these interpretations of how things are and what’s happening and what it means, and then we leap into action without checking it out first. We “jump on it” and make a mess of things, and then we run around like chickens with our heads cut off, trying to fix what we screwed up in the first place. It’s all very exciting, and it makes us feel like we’re making progress, but we’re doing the opposite — creating a lot of drama and suffering for ourselves and everyone around us.

So, in that spirit, I’m going to start my day. I’m working at home today, because I’m finally able to get a plumber in to fix a leak that has gotten progressively worse over the past two months. At last, I have the money to pay them, and I have the time for them to come to the house. Those two things have been sorely lacking in the past months.

Speaking of sorely lacking time, I think I’m going to take a day off, pretty soon. All this working, all this pushing, all the interactions with house guests and visitors and new co-workers has kicked the crap out of me, and I need a day to myself. I need some silence. Just silence.

So, I’ll look at my schedule and pick a day that works for me to just check out. Every now and then, I need a break. From everything.

But for now, it’s into the day for me.

Onward.