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?

A whole new me shows up

It’s interesting. My neuropsych is about to get to know a completely different side of me, which I suspect they had not encountered much before. I’m not even sure if they know this side of me exists.

For years, I’ve been going to see them early in the week, before things got too crazy, and the rest from the weekend hadn’t worn off, yet.

Now I’m seeing them at the end of my week, when the weekend is a distant memory, I’m half-baked from exertion, and I just don’t have the time and patience to be thoughtful, mindful, and all that contemplative stuff.

I suppose it’s just as well, because I’ve been trying to tell them about the challenges and hurdles I have to deal with on a regular basis, and they just don’t seem to think there’s that much to it. I don’t want to make too much of it, but by the time Thursday evening rolls around, I’m half-crazed with fatigue and stress and frustration.

And I don’t have nearly the attentional bandwidth and concentration I do, early in the week.

It’s been a huge adjustment for me, to see them Thursdays instead of Tuesdays. I hate to say it, and I hate to admit how hard it is, but it really tears me up, not being able to check in on Tuesdays, as normal.

Well, things change. People change. Situations change. This is just one of those things.

But it would be nice to have some input and check in, before the whole of the week gets away from me.

I guess I’ll just have to adjust and acquire some new coping skills.

Geez, what a pain in the ass.

No, we are definitely not alone

We’re all in the same boat, kind of

My job went well today. I have good days, and I have not-so-good days. But there is always another day to come. I was quite rested from the long weekend, and because I don’t have a short 4-day week, this week, I can work regular hours and not have to “bulk up” on my hours, so I can come close to breaking even.

I also canceled an evening appointment tonight, too, which turned out good, because we had heavy rain storms this evening, and I would have been caught in a nearby city in the pouring rain, if I had gone in. But I didn’t. I took my time getting home, and I saw some very impressive downpours and washouts.

Ah, summer.

Anyway, now I am on hold with the insurance company, because I messed up my coverage election, and I am currently without health coverage. This could be a real problem, but I’m not letting it get to me. I just need to jump through some hoops and deal with it. I can’t get all anxious about what *might* happen. I need to focus on what is and is not happening, and just stick with the details.

I noticed at work today that there are a lot of people in my same boat — we’re new, and we’re figuring things out. Some of my coworkers are ultra-helpful and bend over backwards… while others are more cliquish and don’t want to extend themself to the “newbies”.

At least there are a bunch of us who are in the same boat.

And I think about how many people there are in the same situation as me, hassling with paperwork they do not understand, trying to get help from people who aren’t very interested in helping them on the phone, hassling with devices and whatnot. I hate talking on the phone, because it is hard for me to hear and process things quickly, without seeing the person I’m talking to. It’s very stressful for me, but I have learned how to keep the person on the line until they have answered all my questions at least 2-3 times.

I make them repeat what they said, then I repeat it back to them, and ask them to confirm what I understand.

It’s awkward and difficult, but I get the answers I need that way.

You do what you have to do.

And if I let it get to me, it would make me NUTS at how convoluted and confused everything is. If you don’t have 100% clarity of thought, or if you’re distracted or you have some other cognitive issues, the system is pretty much stacked against you. That means a ton of people aren’t served very well by much of anything we have in place in this country.

I am definitely not alone.

But instead of getting all tweaked about it, I’m going to write up my notes from my call, gather my wits about me, and warm up my supper… and have a nice evening relaxing and reading.

It’s all good. It’s just a real pain in the a$$ sometimes.


Come Monday, a lot is going to change

So, it has finally happened. I had some phone screens for a new job, followed by interviews, and I got — and accepted — the offer!

Holy smokes, it’s actually happening… After years of fits and starts, fumbled attempts, and being pushed aside, I finally found a company that is looking for what I’m offering — and who can offer me what I’m looking for.

They contacted me after finding me on LinkedIn, and we’ve been trading phone calls and emails for about a week, now. I had a couple of phone screens with two different hiring managers… we decided together that one of the positions was better suited for me than the other… and I had live meetings with a number of folks I’ll be working with in the future.

We all really liked each other, and there was a mutual respect and professionalism that has been sorely lacking in my current situation. I’m not sure why the people I’ve been working with think it’s okay to behave the way they have been, but everybody’s different, I suppose.

At least now I’m going to be working with folks who have a more similar outlook to my own.

Pretty amazing. My head is spinning. Still.

I’ve been very on-the-down-low about this, because I didn’t want to jynx it, get cocky, make any assumptions, or otherwise let my guard down. This is important to me — so very important — and the company is GOOD. They’re well-known, and they have a department that matches what I’m looking for much, much more closely than anything I’ve been able to find in years.

The best thing is, they’re really excited about me starting, too. We really hit it off, on all counts, and everyone has been really enthusiastic about me joining their team.

I am so profoundly grateful for this. And I know that the work I have been doing with the dual n-back training and the juggling has actually helped me.

Just the boos from watching myself learn and grow over the past week, has been a huge help. Realizing that I actually CAN learn to juggle… seeing proof that I can remember things and improve my dual n-back testing response times… it’s been great. Just great. And I wish I could pass this amazing feeling on to everyone who struggles with these kinds of issues. Because there are things we can do to help our brains work better.

And that includes rest.

I am exhausted. It has been a wild ride, this past week, and it’s going to get even wilder for the next two weeks.

Off to bed I go.

When it starts to pay off

Okay, this is interesting. They made the announcements about the new organization yesterday, and I actually got a promotion within the organization. Not only that, but the boss I’ve been reporting to, who is 10 years my junior (and has yet to make a lot of the mistakes I’ve made in the past), is no longer my boss.

Praise be.

This is good.

I feel like a huge weight has been lifted off me, and my future is looking a heck of a lot brighter. And the person I now report to has been nothing but professional with me – none of this juvenile crap that I’ve had to put up with.

Yes, this is good.

So, this changes things a bit. I am *still* committed to sharpening my technical skills… and this change means that in the meantime, I don’t have to suffer and chafe under the rule of people who are utterly clueless. It’s the best of both worlds, really. And it’s getting better.

In a way, I had been hoping that things would turn out lousy in the re-org, so I can move on. But I have a long ways to go, before I will be as competent as I want to be in the new skills I am honing, and I probably need about a year to brush up on them before I can break free of the situation I am in.

So, in the meantime, I can relax at work, settle into this new role… AND be working on my skills and my proficiencies in a more relaxed, less stressed frame of mind.

Which is good. Because as motivating as it can be, to be unhappy in a current situation, it’s still a drain on your energy and resolve. It’s hard to keep up the enthusiasm for where you’re going, when the place where you’re at is truly miserable.

This way, I get to at least enjoy myself in my temporary situation … keep my great benefits and job stability… AND work on my technical proficiencies so that I have truly mad skills, when the time comes to move on.

So it goes. This doesn’t change my plan to go, once I am ready. It simply ensures that I’m not going to be a miserable S.O.B. in the meantime.

And that’s a good thing for everyone.


More practice

I got a reprieve this morning – I was supposed to have an 8:00 meeting, but that got cancelled, so I got an extra hour to do what I wanted. That includes working out a little bit — just light movement and stretching, since I’m pretty sore from outdoor work – and spending a little time working on my studies.

I’ve been on a roller coaster for the past week or so, talking to recruiters, and having this nagging suspicion that I am not as much up to snuff as I need to be with regards to my skills. I need to work on that, and I think I’m going to suspend my active job search to give myself time to come up to speed with the things I really want to be doing, instead of getting something that’s half-way there.

Besides, I really feel like I need to finish out the year, get all my remaining vacation time for the holidays, and not spread myself too thin. I will still keep talking to recruiters, but I need them to back off and not throw more jobs at me, until after the new year. I know they need to make a living, but I also don’t want to waste anyone’s time.

So, I’m stepping back and giving thought to this process. It’s more important that I find the right position, than that I find *any* position.

This is all good practice for the rest of my life, as well. It’s not just about my job situation. It’s also about my life situation — not letting anxiety get the better of me, and not letting my knee-jerk reactions get the upper hand. It’s about stopping, breathing, looking around, and using my head and my heart and all my resources to do the right thing for the right reason at the right time.

Obviously, not everything is going to be ideal and perfect all the time, but I can roll with it. Each time I do it, it gets a little easier. So, I just have to keep doing it.

Keep on keepin’ on.


Wake up, brain, wake up

Yesterday was a rough day. But it happens. Mondays tend to be difficult for most people, and the folks I work with are no exception. I think everyone is feeling the passing of summer, and we’re not liking it, much. On top of that, get people started on Monday mornings with a full weekend of activity behind them, and they’re going to be tired. Tired and not really wanting to be at work.

So, people get fired up. All fired up. Pissy and vinegary and ready to rumble. Which is fine, if you don’t understand what that actually does to you and the people around you. When you are aware of the short- and long-term effects of getting riled for the sake of getting riled, it looks like a lot less fun.

So, yesterday started off pissy, and it went a bit downhill from there. Our uber-boss likes to wrangle and tangle, and they like to dominate conversations and “drive the action”. Good God, I cannot wait to get away from this individual. They’re definitely driven by demons beyond most people’s control, and they love to just stir things up and put people on the defensive. They see challenges and threats, and they respond in ways they feel are appropriate. Of course, they could see them as opportunities to come up with something new and different, but a scrappy fight… well, that’s a lot more fun, I guess.

Anyway, it has occurred to me that this individual has some serious attention deficit issues, and those issues drive them. They skip from one thing to the next, and they’re always looking for the next exciting thing to make happen. They have tons of great ideas, but their execution frankly sucks. They don’t even care about the execution. That’s so boring. It’s so drab. It’s not invigorating and stimulating for them, so they just don’t want to know about it.

The thing is, that’s what actually makes their dreams come true.

Well, anyway, it’s all grist for the mill. This is all a bunch more lessons about what I don’t want in my life, and how I don’t want to be in my relationships with others. It’s also really great experience holding my own in the face of a whirlwind of intimidation and posturing. Learning to keep my cool in the face of this type of behavior will only help, in the long run. Because this individual, emotional and flighty as they are, is certainly not alone in the world. And it seems that people in charge are often driven to extremes, so knowing how to maintain my cool no matter what the circumstances, is something I really need to work on.

I used to be able to handle it. Years ago, before my last TBI, I wasn’t nearly as susceptible to the influence of (crazy) others, and I had a lot of success as a result. Now I need to build back that capacity… all the while not letting my attention drift from my ultimate goal of moving on. It’s all connected, and there’s something good to be gotten from almost all situations, so I have to look for that and keep my spirits up.

That involves making sure my brain wakes up in the morning. One of the things that got to me yesterday was how tired my brain was. I started out sluggish, and it didn’t get any better over the course of the day. I didn’t bother to exercise or get myself going in the morning – I just went through the motions, and I could definitely feel it.

This morning, I did things differently. I warmed up and really moved, while I was getting my breakfast together. It’s not Monday anymore, so that’s an obvious improvement – I’ve managed to switch gears and get moving – and I have my agenda for the day pretty much set. Yesterday I couldn’t get away from the intermittent meetings, which kept me from actually getting any work done. And I had to answer a lot of emails. My pace was totally screwed up. But today I’ve put a lot of stuff to rest, and I’m going to stake out my corner of the world, close the door, and get some work done. For real.

That’s the plan. That’s my story. And I’m sticking with it.

All that the world offers us

I’m a “fixer”. That means I look for things to fix. I like to take what’s wrong and make it right. I like to help people who are in need. I am committed to working out my own issues, so that they don’t affect others.

But sometimes, it blocks my vision.

I get so focused on finding what is wrong and fixing it, that I lose sight of what is right, and I miss the chance to appreciate it and make the most of it. My present job situation, as tough as it is, offers me a lot of benefits and opportunities that I have never gotten elsewhere. It’s not a total waste of my time. I do know some things don’t work and those things need to change, but I realize I’ve been throwing the baby out with the bathwater, and I’ve been failing to appreciate the benefits I’ve gotten from this job.

This is important to remember, especially when I am talking to new prospects. I cannot paint my current situation as all-bad, because it reflects poorly on me. Likewise, it makes me come across as a complainer and a bit of a wimp. So, I’m stopping that. And I’m starting today with a list of things that I really like about my current job — the things that make it a good place to be and work. There are some. They aren’t enough to change my mind about moving on, but they are enough to ease the daily stress of this tough situation.

I have a ways to go, before I am as proficient in the new technologies as I’d like to be. I have a lot of studying to do, a lot of practicing to do. I spent much of Saturday and Sunday working on it, and it feels really good. And I know it is just the start. Even if I don’t land a job doing what I love immediately, I still am able to do what I love in the evenings and on the weekends, and I need to make the most of that.

So, I shall.

And now, it’s off to work… for another day.

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