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?

Accommodations needed? Just not recognized?

It *looks* cool – till you try to concentrate and get some work done. Then it’s nothing short of hell. Look at the overhead lights and all those hard surfaces. Good grief. Nightmare.

I had a pretty good conversation with the last interviewer yesterday. They have only been in their present role for 6 months, and they are hiring like crazy to staff up.

So, either they will go for it and try to sign me up, or they will go with someone else who fits better.

One thing that may affect their choice, is that I brought up the types of workspaces they have. They asked what type I prefer to work in, and I said I prefer a space with walls high enough to block out ambient noise and distractions. The whole “open workspace” plan does NOT work for me. I found that out the hard way at my last job, and the main reason I am leaving my present job (sooner or later) is that they are moving — along with everyone else in the cosmos, apparently — to an open space / “bullpen” type arrangement, where there is constant noise and interruption — that’s the point, actually.

The very thought of moving to that makes me physically ill.

I’ve been having a lot of sensory issues, over the past couple of weeks. All of a sudden, I’m sensitive to things that I haven’t been bothered by, for some time. Rough wood grain is a tough one for me — especially wooden eating utensils. Like the wooden “spoon” that I got with a frozen dessert I got about a week ago. The feel of the wood grain on my tongue literally makes me gag. And the feel of biting down on wooden utensils also makes me gag.

I’ve been more susceptible to overwhelm, and when that happens, I get more literal in how I think and speak, and I start correcting my spouse over every little thing they get “wrong”. Like calling an SUV a “van” and not caring that they are two completely different things (in my mind, anyway). I’ve been much more prone to correct my spouse over every little thing, which makes them nuts and sets off their anxiety, because hearing someone constantly correct you can mess with your head.

Anyway, that’s been going on. And the ringing in my ears is making it hard to hear what people are saying to me. It’s also the ambient noise, that seems like it’s bumped up intensely, lately. I blame it on barometric pressure and the weather in general, when I talk to people. Telling them my TBI symptoms are acting up again, doesn’t create the impression I want to give people — the kind of impression that will get me jobs.

So, back to that conversation about workspaces. I said I prefer a cubicle with walls high enough to block out distractions and interruptions. I need to concentrate. I don’t think people understand just how intensely I concentrate, when I do. Or what that concentration produces. I recognize patterns. I find things that no one else sees. I’ve had to learn to concentrate with single-pointed focus, because of all my issues. And it’s stood me in good stead.

I wonder if that counted against me — not being flexible with the kinds of workspaces the company mandates. Nobody wants someone who’s a complainer or a prima dona. Nobody wants to deal with extra accommodations and folks who are in a position to sue. They can find any number of reasons to not hire you, if you look like you might be trouble. I  know, because I used to be part of several teams that interviewed and hired folks, and there are a million different ways to disqualify someone who looks like they might be a litigation risk.

But it occurs to me that I may have been needing accommodations all along — an enclosed workspace where I can retreat from the stimuli and focus on my work. Years ago, I had an office with an overhead light I could turn off and blinds I could close. I had a desk lamp that provided the perfect amount of light. I could close the door and work in silence, and it was ideal.

Then they moved us to an open space floor plan, and it was hell. And I am pretty sure it did not help my recovery at all. Too many distractions. Too much input. It was so wrong. And I’m at the point now, where I know I need to never go there again, except for short periods of time. I don’t mind it for brief periods, but holy f*cking sh*t, it is miserable and stressful and prevents me from doing my absolute best work.

Which completely negates the whole point of going to work each day.

So, what I come to, now, is wondering if I actually needed special accommodations all along, but never realized it. And certainly never got them, except in rare and accidental circumstances. I know I need to actively screen out and disqualify those kinds of workplaces, and the kinds of companies that are in love with them. And it becomes more and more clear to me that I really need a remote job — either half-time or full-time. I need to work in ways that let me perform at my best, and keeping clear of open workspaces is the first step in that direction.

Anyway, whatever happens with this interview, it’s just a step in the direction I need to go. I’m going to start scoping out companies that offer more than 50% telecommute / remote positions, and see who’s good to work for. And I’m going to keep working on my own projects, so I can get a good foundation in place for my future. I’ve just turned 50, and I have a much better idea, now, what I need to do and how I need to work, than I did just 5 years ago. So, here’s to the next 50+ years of productive, happy, healthy life – with the right choices made for all the right reasons. And the wrong choices left behind in the dust.

Onward.