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?

Making room for more

And so another small chapter draws to a close, and a new one opens. Today I am finally going to start my vacation. The past few days have been pretty difficult for me, being off work notwithstanding. Since Friday night, we have been hosting a friends, in one capacity or another — there’s the friend who showed up on Friday night and has been staying with us at the vacation rental, whipping up drama along the way and generally being underfoot. There’s the other friends who came out for the evening last night and had dinner with us. And then there are the friends who are on the phone, calling and checking in and needing something when we get back next week.

It’s been a rough several days for me, with Saturday through yesterday (Tuesday) not giving me much rest or a break from constant stimulation. And it’s been driving me nuts. I am so exhausted, my spouse doesn’t seem to get how fundamentally fatigued I am — not just today, but in general — and that I need rest and quiet for more than an hour at a time. And for some reason they don’t get the idea of long-term sleep deficit.

How ironic. When they are just a little bit tired from an exciting day, they will sleep for 12 hours and not think about it. But when I’ve been going full tilt boogie for weeks on end, with maybe 5-6 hours of sleep a night, they still expect me to be part of their late-night plans.

Frankly, it makes me want to divorce them. I can’t live the rest of my life exhausted, and I feel like they have just used me up and are ready to throw me away. I was so tired the other morning, after being constantly pushed, and being woken up at 5:30 by them being up and about after staying up all night, I just snapped and flipped out at them in that way that makes them afraid of me, and has them “handling me with kid gloves” for days on end.

I just need a break. From them. From the people. From the distractions. From the social activities that give me no enjoyment, only drag me down and make me feel broken and inept.

I need some solitude. But at the same time, my spouse still needs me to help them do the most basic things, like put on their shoes and eat regular meals, because they either cannot reach their feet from back pain, or they cannot be bothered to keep on a regular schedule.

I don’t know. I don’t want to sit around bitching about situations that I have helped to create. I’ll have to find a way to work with this, if I want this marriage to work. For the most part, it does, but there are some things that are so critical as to be non-negotiable. At least, they should be. Like getting adequate sleep and recovery time.

The real problem is not with my spouse, however. The real problem is with me – not being clear about what I need to do and have to take care of myself, and not speaking up for myself. It just depresses the hell out of me when I have to fight for something as basic as a good night’s sleep. It seems like the sort of thing that should be self-evident and go without saying. That, and routine.

But my spouse doesn’t see it that way. From their perspective, my need for structure makes me a “Nazi” and it ruins their spontaneous fun. They like to just go with the flow… as though the world were made up of limitless time and money and resources. And if they don’t get what they want, then it’s a cruel crime being perpetrated on them to make them unhappy. Everything is personal with them. And they get very peeved very quickly… and they’ve very vocal about it, as well.

The thing is, I knew a lot of this when we first met. And back in the day, it wasn’t a problem. It was just one of the things that made them… them. And I loved them for it. Time change and people change, of course, and ever since my TBI in 2004, I have had less and less patience for that kind of behavior. Also, since commencing my recovery in 2007, I have really changed a lot, becoming less and less like them, seeing how a lot of our behavior has been really unhealthy and outright harmful.

And my tolerance has dropped through the floor.

Which is never good. Ultimately, as much as I carp and complain about the traits and qualities of others, the real issue is my tolerance level, and my ability to take care of myself without someone else thinking for me. It’s just part of being alive and being an adult, of course. And it’s not like I’m being held against my will in a horribly abusive situation.

Far from it. I just need to tweak a few things and more actively manage my own fatigue levels.

I need to keep myself from getting this tired, this delirious, this fragmented. Of course, the past several months have been sheer hell, and those types of conditions don’t happen all the time, so this is a bit of an anomaly. I know how to recover from this. And I will recover. It’s just a matter of managing it better.

And also making room for it, when it happens.

Some of the things that have made this time even more challenging than it has to be, are:

• I haven’t made sure that I got enough rest each and every day. I haven’t communicated clearly to everyone that I need to rest, when I need to rest, and I’ve pushed myself harder than I really should have.
• I haven’t worked out with my spouse the “terms” of my recovery. My exhaustion has sort of blind-sided them, when it’s come up, because they think about their own needs 99% of the time, and if I don’t tell them over and over what’s going on with me and what I need to do about it, they get very angry and resentful towards me.
• I haven’t made it clear to people just how exhausted I am — most of all my spouse. I’ve just been pushing myself on adrenaline, and at the same time my gears are pretty much stripped, I’m still exceeding the proverbial speed limit — in 2nd gear. To all appearances, I’m still functional. I can still drive. I can still walk a straight line. So, I should be fine, right? Not exactly. Judging by my appearances, my spouse has been very unclear about the problems I’m having, which has made it tough to communicate to them and manage their expectations and also carve out any type of relaxation time for my recovery.
• I am still pretty much in denial about living with a narcissistic borderline sociopath who lies and cheats and steals to get what they want out of life, and lives on the edge because that’s the only way they can every feel truly alive.

The last point is the main one, which makes things difficult. I just need to face up to the fact that I am married to and living with someone who has been deeply, deeply wounded in the past, and is still hobbled by their scars. I cannot even imagine the hell they went through as a child, even from the partial details I know (which is not everything, because they can’t remember a lot, themself). Their old wounds refuse to heal — in part because from what I can tell, they cannot bring themself to face the whole truth about their family situation. And they keep going in spite of it.

That last bit is what I need to focus on — the fact that they keep going, no matter what. Because as difficult as it can be for me to live with them, they actually do a lot of great work with people. The work they do with others to help them heal has literally saved lives. And there are countless people with a similar background, who have been helped — really restored to life — by their influence in their lives.

And this is what keeps me in this marriage, continuing on, despite the harm and pain and struggle. Because what comes out of this marriage is life-giving and restorative for many, many people far beyond the domain of our relationship. And as much as I complain about their negative traits, the positive traits are what help keep me alive. I wouldn’t still be here, if it weren’t the case. In fact, this blog is happening and helping people, because of the stability and support that comes out of the good parts of this marriage. My spouse doesn’t know I maintain this (as far as I know), but the support they offer and the help they provide does keep me going.

So, this marriage isn’t just about us, it’s about the work that we both do. And the stability of this marriage, for all its ups and downs, makes it possible for us both to do our work.

The main culprit in this dynamic is intolerance, judgement and fear. It’s me getting uptight when I hear them making up stories to make other people feel better, or to get their own way. It’s me focusing on the negatives instead of the positives, and making things much worse than need be. It’s me not taking care of myself, not accepting the fact that I need to sleep — a lot — and I need to be proactive in my management of my own issues. It’s me not including my spouse in my recovery and recruiting their help in getting me back on track.

Yes, they do have some serious mental health issues. But at the same time, they do an awful lot of good in the world and they help an awful lot of people on a regular basis.

Nothing is 100% good or 100% bad. There are up-sides and down-sides to everything. I just need to find the up-sides and stick with them.

Because ultimately, making room for the “bad stuff” helps the good stuff happen all the more.