This is the story of my last three days. Snowstorm. Trees down. Wires down. Not much going on, other than winter. Storms. Electricity out. No heat, no running water, no television, not much connection with the rest of the world.
Living on battery power, using the mobile phone to contact the rest of the world. Staying close to the fireplace, keeping the fire going all night long, finding different ways to get meals and keep occupied. Waiting for the power to be restored. Hearing one thing, then another, then another.
Waiting, just waiting. Watching the snow fall. Moving it off the driveway. Off the roof. Off the back deck and stairs. Lots of snow. Half a meter’s worth. 18″ worth. Heavy, thick, packed snow.
And now I feel it. In my back, my legs, my arms, my shoulders. Bruises all over my legs, where I slammed against the snowblower. Cold. It was cold. And the all-over ache that comes after hours and hours of being tensed against the cold. Countless trips up and down the stairs to get more wood for the fire.
All in all, it wasn’t terrible, being out of power for two days. Longer than that, and it would have been a problem. We would have gone to a hotel, because my spouse can’t afford to get sick, and they’re more susceptible to cold than I am. We came this close to going to a hotel, then decided against it — the place we called said there were a lot of families checking in, because they lost power, too. And having a lot of kids running and screaming (’cause that’s what kids do, when they’re cooped up, let’s face it)… well, that wasn’t the most restful option.
Better to stay in our own space and try our best to stay warm and dry. Wait it out. Gather around the fire. Rest. Wrap ourselves in blankets and relax. Wait it out. Just wait.
And we did. Power was restored 3 hours sooner than they said it would be, and that was fine. In the bargain, I scored some major points at work for continuing on through with my work, despite having no electricity or heat or running water. I managed to logon to my work by connecting through my phone and then sitting in my running car to keep the power going to it, so I could complete some must-do tasks.
And now I have a reputation for being that much more of a can-do person, with total commitment to getting the job done. So, something useful came of it. Which is fine.
So it goes. I handled this storm considerably better than I handled others in the past. I kept my cool. I kept focused. I wasn’t a total jerk to my spouse. And I came out of it ahead of the game. I’m wiped out and would love to sleep for 12 hours, but I’m also keenly aware of how much good it did me to really move. And not spend all my time in front of a computer, like I’ve been doing for the last however many years.
It was good to have the enforced break. Away from the constant hum of machines, away from the low-level buzz of non-stop electricity. Listening to the wind. Getting out in the snow. Just living a very basic life, and being profoundly grateful for everything I have.
Now it’s time to go get some supper. The refrigerator isn’t smelling all that great. It stayed cold, but not cold enough. So, off I go to replenish it. And get something really good for dinner tonight. Something filling, substantial… and hot.
My left shoulder is still killing me. But I know how to fix it — for the near future and in the coming weeks and months:
Movement. Keeping mobile. Not letting myself sit still for hours and hours, like I have been for the past several weeks.
Or maybe it’s been months. I’ve had a lot going on, lately, and 90% of it has been in front of a computer. Yes, I’ve gotten a lot done, but it’s come at a price.
So, it’s time to change that up. Move my entire body (not just my hands). Get up and walk around the room, while I’m on the phone. Get my morning exercise AND build in additional movement (especially weight-bearing movement) throughout the day. Don’t just sit still for hours on end. That’s kicking my butt.
I’ve got a plan. Now, I’m going to get up and walk around a bit.
Because that’s gonna keep me knit together in one piece.
Well, I’m off to an interesting start, this morning. I got a good night’s sleep, then I got myself out of bed at a decent time and got my exercise. Did some stretching. Did some lifting. Rode the exercise bike for a little longer than usual. I gained a few pounds over the past couple of weeks of intense work-eat-sleep-work cycles, and I’m not feeling that great, as a result.
Sluggish, stiff, the opposite of limber. And weak. That’s how I’m feeling, these days.
So, I’m doing something about it. And it’s not very pleasant, I have to say. It’s downright painful, in fact. Getting myself back on a regular routine, after going down the rabbit hole of overwork isn’t something my body is very happy about. It wants to languish. It wants to just keep eating and sleeping and working. But I can’t give in to that. Because that leads to more of what I’ve got now — weakness, chronic pain, and trouble doing basic things like brushing my teeth with coordination and putting my socks and shoes on easily. When my body isn’t working well, those things — and more — fall apart.
And I can’t let that happen.
Some days, it feels like a constant struggle to just maintain a normal pace. Some days, it is a struggle to do that. But struggle just comes with the territory in my life. Nothing important happens on its own, in my experience, and I tend to have different ideas about what should happen, compared to the rest of the world. So, to do things like have some peace, I have to structure my life very differently from most people.
I’m not particularly interested in living in a steady stream of busy-work and mindless distractions to take my mind off the poor choices I’ve made. I’d rather just not make those poor choices, to begin with. So, that means I opt out of so many of the activities that others take for granted. I keep my social media interactions to a fraction of what most people have — including Facebook. I try not to get sucked into the current news cycles, including all the in-depth “analysis” (which just boils down to propaganda, from what I can see). I don’t go out to movies or concerts. I don’t drink alcohol or smoke, and I avoid bars and clubs when I can. I take time to cook decent meals and I keep my television viewing to a minimum, watching just a few shows — many of them on-demand, rather than clicking around the channels looking for something interesting.
And weekends I keep as low-key as possible. Every now and then, I’ll go out and do something, or I’ll launch into a flurry of errands and projects, but I try to avoid the rest of the world as much as possible on my weekends. I have to deal with everyone the rest of the week, so I give myself a break on Saturdays and Sundays.
Most people I know would hate living like I live. They’d find it boring. Or they’d get nervous in their own company. They wouldn’t like to hang around the house with only their own thoughts (and some interesting reading) to keep them occupied. They’d probably go out looking for something to take their mind off all that.
But for me, this is what I have to do to keep myself stabilized — and sane. Having these two days to decompress is not optional. Sure, sometimes I’ll venture out to spend time with friends, but the more active I am on a Saturday or Sunday, the more low-key my other day is. And the downtime is bliss. Sheer bliss. And I’m not sure I could live without it.
I was talking about this with a friend last night — somebody I haven’t seen in quite some time. They were asking why I don’t do as much as I used to, and I explained that keeping up the 9-to-5 work schedule, and then doing all the extra activities I used to do with my spouse, just got to be too much. It wore me out, and I needed some downtime. And they got it. Because over the past couple of years, they’ve been divesting themself of a lot of the “trappings” of a settled life. Rather than keeping up a house and paying a mortgage, they’re traveling around the country, house-sitting for friends for a month at a time, and then moving on to the next thing. Some people cringe at the idea, but it was working well for them.
It’s what they have to do, at this point in time. And it’s working. And they love it. Just like I’m keeping my life low-key on the weekends, cutting back on online social media stuff, and following the news a LOT less than I used to, while the rest of the world goes crazy around me.
To some, these would seem like sacrifices. And in fact, 15 years ago, before my 2004 mTBI, I would have really fought against a lot of these choices. But over time, I’ve realized that this is really the best way I can possibly live my life, and enjoy myself while I’m at it.
I’ve had a really busy couple of weeks, so I’m going to rest as much as possible, today. Do some reading. Think about stuff. Or just stay in bed. We’ll see what happens. In any case, it’s all good.
The rest of the world will be there when I resurface in another 24 hours.
The way life goes, you never know how things will shape up. I’ve had so many hopes and dreams over the years, and so many times, I’ve been on the verge of really breaking through… then something happened. And that “something” was often a TBI.
I was just getting my act together in elementary school, finding my footing with my peers and getting involved in a special program for “gifted” kids and discovering what worked for me, when I got hit on the head and things changed. I became combative. Difficult. A behavior problem. So much for the gifted program. They showed me to the door on that one.
My family relocated, and I was finally figuring out how to interact with the people around me (who all talked with thick accents I could barely understand). Then I fell out of a tree and wrenched my neck. And I kept hitting my head while playing sports. Football. Soccer. Just playing outside. Hitting my head was routine. I can remember a number of really significant blows to my skull that disrupted my consciousness, but they happened against a backdrop of regular clunks on the head. It seemed like every time I got on my feet and started feeling like I had a grip on my life, I’d get hurt (again), and I’d be back at square one.
I eventually got out of my parents’ house and got on with my life. When I drank a lot, I fell down — a lot. I may have (probably) hit my head a bunch of times, but I don’t remember much from the 4-5 years after I left my parents’ home. Those years that could have been some of my best (and in some ways, they were). They could have been years of exploration and learning and experience like no other, but instead they were mired in the muck of hangovers and all the confusion that comes from not knowing what happened the night before. A few scrapes with the law… being ostracized by my peers… some violent confrontations… making money by borderline means, just to get by… it was definitely an experience — that’s for sure. But it took me years to recover from the damage I did to myself.
After I was in the working world, driving to work each day, I got in a bunch of car accidents. They weren’t huge deals, mostly just fender-benders, but whiplash and getting clunked on the head didn’t help matters any. During years when most of my peers were getting on their feet, finding their way in the world, I was scrambling. Trying to catch up, after being set back. I got a job, then got hit by a speeding door-to-door salesman. I left that job without saying why. Just left one day and never went back. I relocated to a really great city, but just before moving, I got rear-ended and spent the next several months in a manic haze.
Years later, I had a pretty decent job with a lot of responsibility, then got tangled up in a 7-car pileup, and everything fell to pieces there, too. That worked out okay in the end, because I found a much better job and a completely different career track, but it did a number on my self-confidence, and it caused me to pass up a golden opportunity that my new manager laid at my feet (and begged me to take). I can only imagine how much more stable my life would be now, had I actually taken them up on it.
The last and most debilitating TBI was when I fell down a flight of stairs at the end of 2004. I was just 18 months away from having some investments mature, and if I’d been able to hang in there and keep up with my life, I could have repaired and paid off my house, gotten rid of my debt, and really solved a lot of logistical problems that are the kinds of things that only money will solve. None of that got solved. It all fell apart. And it’s taken me 12+ years go piece it all back together to just a semblance of how things once were.
So, what does this have to do with my current vacation (which is now drawing to a close)?
In the course of my life, I’ve never known just when everything would fall to sh*t. It’s partly me being oblivious, partly me not having a reliable crystal ball that lets me peer into the future. So, all those times when I just assumed I’d have time to do this, that, or the other thing… all those times when I thought I was set… all those times when I didn’t pay attention to what was Right In Front Of Me… in so many cases, they were the last hurrah for that part of my life. The last shred of self-confidence. The last vestiges of feeling competent. The last months of feeling like I could actually plan my future with certainty. The last weeks of being able to take certain things (like how my brain worked or how I’d react to experiences) for granted.
I didn’t savor those things when they happened, because I was too damn’ optimistic. Too oblivious to just how sh*tty life could get for me. Not experienced enough to realize that things could get That Much Harder for me in a moment’s time. I took them for granted. I didn’t wring every last bit of goodness out of them, while the goodness lasted. And now I just look back on a lot of wasted opportunities and chances I totally missed enjoying… all because I thought there would be another time that would be somehow better.
I don’t believe that anymore.
Especially not this morning.
From here on out, my vacations will probably be a lot more work than relaxation, a lot more frustrating than renewing, and a lot less worth it to me. But they’ll continue. Life goes on. Sh*t gets complicated. So it goes.
For today, I’m just going to enjoy myself. Because this might just be as good as it ever gets.
I’m leaving for a week’s vacation today. I have a handful of errands to run before we can get on the road, and then we are heading out to a waterfront town that’s full of art galleries and novelties shops and all sorts of great restaurants. We have a few restaurants that we really like, but mostly we avoid the crowds and excitement, buy Mexican or Chinese takeout and head for the beach for our own waterfront dining. It’s the best way — sitting in the car right at the edge of the water, having a nice filling meal that doesn’t cost a million bucks.
It’s going to be nice to get away. It’ll give me time to think, time to relax. I realize that I’ve been stuck in limbo with my life for some time. There’s been all kinds of drama in my immediate and extended family for the past 15 years — actually, longer than that. More like 40 years. And it’s really dragged me down, watching everyone go through their problems — me included.
But now, here I am, at a place in my life where I just don’t feel like I have the time to fritter away on feeling terrible about things that I can just take care of. I’ve learned a whole lot about how to deal with my TBI issues, and I’ve made an amazing recovery. So why not enjoy it?
Why not, indeed? I feel like I’m at a point in my life where I’ve learned more than enough hard lessons, I’ve been through my make-or-break circumstances, and I’ve made it through. I’ve paid my dues. Now it’s time to just enjoy my membership.
It’s funny… I don’t tend to think of myself as that old. I’m really not. But I have been knockin’ around on this planet for over half a century, and I’m kind of over the whole newbie experience. I’m not a newbie. I’ve been around the block plenty of times. And it’s about time I just settled into living my life and enjoying it, instead of constantly pushing myself to “take it to the next level”.
Please. What next level? No matter how hard I work, no matter how hard I push, there will always be another level ahead of me. So, why not just settle in and get the most out of the levels I reach? I haven’t done nearly enough of that over the years. And while it does keep me sharp and invested in my life, it’s also depleting and drags me down.
Eh, whatever. I’m going on vacation. I’ll probably blog a bit while I’m there. Just relax into it, do some writing, have a good time, while I’m at it.
And now… it’s time for more errands, as I prep for my 7-day escape.
I’ve been “back and forth” about my job, for the past few months. One week, I love it. The next, I hate it and can’t wait to get away. I supposedly got a sort of “promotion” a few weeks ago — more responsibility and more influence, but no more money. Doesn’t seem to be much of a promotion, right? My boss is making bad decisions and is pushing me to put their ideas into action. It’s pretty much of a train wreck, with all the people at the top fighting over their territory, making their minions represent them.
Ridiculous. I don’t agree with any of it. But somehow I’m supposed to make it happen?
The only benefit: it makes the situation crystal clear — I really need to get the heck out of that situation, brush up my technical skills, put my resume out there, and get ready to move after the new year. I actually have some old projects I’ve been wanting to revive, and now seems like a great time to do it.
I tend to have a pretty low opinion of myself, mainly because I know what else is possible, and I’m very clear about how far I fall short. Plus, always being tired, my self-esteem really suffers. Like today. I’m just not feeling that capable or worthwhile…
Except for something that happened last night.
I was on my way home from a meetup in a nearby city, and as I was rolling through the dark countryside, I saw a bunch of cars stopped ahead of me. I was coming up to a tricky intersection, where a hidden road crosses at the bottom of a long, gradual hill. The tail lights of the cars ahead of me weren’t moving, there seemed to be smoke in the air, and I could see people standing in the road farther up the hill, so I slowed down and pulled over, just to figure out what was going on.
When I took a closer look (I was pretty tired), I saw there was a car sitting in the middle of the road with its wheels splayed and its front-end crushed in. The interior was full of smoke, and the whole thing was shrouded in a gray cloud. I was worried at first about there being a fire and the vehicle blowing up — I’ve seen too many movies, I guess. But I couldn’t just sit there. It didn’t look like anyone was helping, yet.
I walked closer to the wreck – carefully. There was glass everywhere. Pieces of car. Rear view mirrors. Chrome and plastic. Halfway up the hill, I could see another car lying on its roof in the darkness. It wasn’t smoking. It was just sitting there, eerily motionless, as people gathered quietly around it.
The vehicle nearest me at the bottom of the hill was a tangled wreck. Once upon a time, it looked like it had been a pretty sweet Mustang. No more. The airbags were shredded. Drawing closer, I could hear voices. I could hear a woman’s voice and a man’s, so I knew someone was alive. I lifted up the “curtain” of limp airbag that was hanging over the driver side window, and behind it there was a driver with is face smashed in and blood all over him, talking to a woman on the remote assistance intercom — like those Northstar systems that come with cars to help you unlock your doors or call for help. The woman was talking to him like he was coherent, but he was really messed up. He clearly had a head injury, his movements were jerky and automatic — like I’ve been a number of times after getting clocked on the head. She kept asking him questions, and he was responding like he knew what he was talking about. He didn’t. He was in bad shape.
Beside him, there was a passenger whose left leg was bent weirdly. No wonder. The car’s engine had been pushed back practically into his lap. I didn’t get a close look at the other guy — who was talking a bit, too — because I was focused on just talking to the lady. And others had come over to help and were checking him out. I talked to the lady on the intercom, told her what I was seeing, and reported what others were seeing about the other guy.
I also “talked down” the guys in the car, who were trying to get out. The driver kept reaching down beside his seat for something, but I told him to stay put. Don’t move. Help was on the way. The interior of the car reeked of alcohol, and one of the other bystanders who was helping said she’d seen drugs beside the seat.
The local first responders were there within minutes. The accident was just a few miles from the local fire station, and when the fire truck pulled up, I told the firemen what I knew. They were on it, and I got out of their way. Then I got back in my car and moved on.
When everyone else stood at a distance, I stepped up.
When everyone else couldn’t communicate and keep things in order, I could.
When a couple of seriously injured people were on the verge of potentially hurting themselves more, I kept them safe and kept things steady.
I’ve been in these kinds of situations a number of times. A co-worked who collapsed and was unresponsive… someone who’d fallen and hit their head… an elderly person who had a bad reaction to a medical trial they were participating in… a person pinned between their car and a fence, when they didn’t put it properly in park… I’ve come across those people who were badly injured or hurt enough that they couldn’t help themselves, and I’ve been there for them, till help came. Several times I’ve run for help, myself.
It’s what I do. It’s one of the things I do best.
And for all the foolishness that’s taking place at work, at least I know this is something I do. Handling reality. Dealing with a true emergencies.
And I need to remember that, as I navigate this scene at work… finding a path out… figuring out what’s next. There are some things I do better than just about anybody else. They’re just not part of my job description, right now.
I’ve been thinking about all the time (and money) I’ve spent over the past year, working with the 2nd neuropsychologist… They responded back to my cancellation email saying “understood”. Actually, don’t think they do understand, but that’s neither here nor there. If they really understood, they’d offer me a refund for services-not-rendered, because to be honest, I’m not appreciably better off now, than I was a year ago April, when I started working with them.
If anything, I might actually be worse off, since they were pretty keen on telling me all the things I needed to look out for, and where my first NP was intent on getting me to not think of myself as disabled, the 2nd one was all about that.
Plus, they were all keen on telling me how badly off my spouse is, how I can expect them to go downhill sooner, rather than later, and getting them in for some testing, they could get help for their decreasing capacity.
Yeah, I’ve been through that before… again, with another “provider of services” for folks who can’t take care of themselves. I’ll be the first to admit that I can be gullible and overly trusting, especially when it comes to people in the “helping” business. I tend to take them at their word, which is how I want people to take me. But alas, it’s not always warranted.
Nor was my trust of this latest NP. Sure, they came highly recommended by the first NP, but I don’t think that old NP was a very astute judge of character. Plus, I think they have a tendency to be as trusting as I am. They spoke highly of a number of other clinicians over the years — but the ones they recommended were incredibly disrespectful of them behind their back. That does not fly with me. No way. No how. Not gonna work. And it never ceases to amaze me just what jerks people can be.
Well, anyway, I’ve gotten away from that bunch of jerks.
And again, I think back to all the hours and dollars I spent trying to stick with a program that wasn’t supported by others whose job it was to support me. I literally spent an extra 4-5 hours nearly every Monday night, along with untold hundreds of dollars, trying to make it work. Because I believed. Because I trusted. Because I was locked on a target that was incredibly important to me.
I would have been better off, just going home at a decent hour, getting some extra sleep, and spending the money on books and a new computer. I could have bought a lot of books — and a couple of really decent computers — with the money I spent on those sessions.
Well, live and learn, right? On the bright side, I did have some good times, here and there, and I did learn a few things along the way. So, it wasn’t a total waste of time and money. Just mostly.
And it has occurred to me that one of the big reasons I’ve flamed out at a number of jobs over the years is because of fatigue. Come to think of it, I believe that fatigue is the #1 Reason Things Have Gone South For Me At Work. Seriously. When I think back on all the jobs I’ve held that ended sooner than people expected me to leave, I always had a long commute, to and from the office. Over an hour each way – five days a week. The practice of working from home hadn’t shown up on the radar, yet, and I was still drawn to work in the city. I had to be on-site each and every day, surrounded by loud people, frantic situations, and all kinds of chaos. Even though I enjoyed a lot of it — fast-paced environments, and all that — it took a toll. It wore me out. And it took a huge chunk out of my resilience and ability to cope.
So, I had to leave.
Over and over again.
Sooner than I should have.
Some jobs, I left after only a few months. Others, I stayed nearly a year. Others, I hung in there for a few years, but got worse and worse off as time went on. Fatigued. Worn out. Confused. Turned around. Blown up and blown apart and wiped out, each and every weekend.
Fortunately, it’s not like that anymore. At least, with my current job, I can work from home 2-3 days a week. Sometimes I can even get a nap. And on the days when I do go into the office, I can go in at my own pace. Do a few conference calls from home, then drive in after 10:00, when the roads aren’t so clogged, and I can get where I’m going more easily. Evenings, I can go work out at the fitness center, then roll home after 6:00, when traffic is less. I should have done that last night, instead of trying to get home directly. I sat in horrible traffic for over an hour, total. Not a good use of time. I really should have worked out.
But again, lessons learned.
Next week I have another chance. Heck, I can even go work out this weekend, if I like. I really should. I need the strength work.
So, that’s my revelation for the day / week / month… I need my sleep and I have to take steps to make that happen for myself. Instead of forcing myself to make things work, taking up extra hours and energy (and fuel for the car) to wedge myself into a situation that’s not really working, I should do something truly constructive with my time and resources.
So, my life is morphing, and that’s okay. It’s good, actually. It’s a long time coming — a wake-up call, reminding me where I really fit in the grand scheme of things, and prompting me to “buck up” and take matters into my own hands.
Not be dependent on a system that’s inherently hostile to me, by design.
Take responsibility for my own situation, and do everything I can to advance my own cause, as well as support others who need similar help. That’s what this blog is all about — putting my own personal quest / journey out there, in hopes that others might just benefit from it as well.
Brain injury is woefully misunderstood. Brain injury rehab resources are irregular and over-hyped and work differently for many different kinds of people. Plus, they can be expensive and/or inaccessible to folks who aren’t rolling in money. So, this blog is intended to fill certain gaps that exist in the world — by design.
It’s been said several times by people on this blog (who have a history of involvement in the brain injury rehab field), that brain injury can be a “cash cow industry” that’s seen its share of fraud and exploitation. I can totally see how that can be — you’ve got patients who are impaired to various degrees (some of them severely), who can’t advocate for themselves. You’ve got friends and family and loved ones who know precious little about brain injury, what to expect, how to handle it, etc. And you’ve got an insurance infrastructure that will pay for some things, but not for others. Considering how vulnerable brain injury survivors are, it’s the perfect industry to get into, if you have no morals or ethics… or fear of burning in eternal hellfire and brimstone.
Even if you’re a good person with the best of intentions, keeping to the straight and narrow must be awfully difficult in that industry. My first neuropsych (NP) bucked the system for years, providing services to me at a discounted rate and submitting insurance claims with the billing codes that worked. The later NP apparently never mastered that skill. Either that, or they didn’t actually want to. They said they spent a lot of time fighting with the insurance companies, but it seems to me they didn’t explore every conceivable loophole available.
I just can’t get free of the belief that, if they’d wanted to find a way to help me at a sustainable level, they could have found it. Find a way or make a way. The fact that they didn’t, and then they charged me more to make up the difference… maybe that’s standard practice in the NP field, but that won’t fly with me.
So, the long and short of it is that here I am, on the business end of the rehab cattle prod — like so many others, removed from regular support because it’s overpriced, and I’m not paying market prices. Assigning market prices to services to vulnerable people seems… odd to me, anyway. Hell, having healthcare be market-driven strikes me as a complete departure from the way healthcare should be handled, anyway. Hospitals were often started by religious groups, and the concept of healthcare was expanded in the Roman Empire after Christianity became the official religion. So, there’s historically been a religious/spiritual element to healthcare.
Historically, that is. Over the past 50 years, perhaps because of the decline in religious fervor, it’s become more of a commodity. And healthcare, in my opinion, can be about the most predatory kind of market I can think of.
I mean, who makes their money off vulnerable people who have nowhere else to turn? Seriously… who does that?
Well, anyway, that’s pretty much how the world works, these days. Of course, there are healthcare providers who will step outside the standard-issue money-making paradigm and act as true healers. But those people can be few and far between. And I think it must be easy for young clinicians to fall into the dominant mindset of charging as much as possible for services rendered. Treating healthcare like a provider-consumer arrangement, where everybody is expected to be a “good consumer”.
That logic makes no sense to me at all. A few years ago, I wrote a post I am a shitty healthcare consumer, and it still holds true. I will never, ever be comfortable with the paradigm that reduces everyone in the healthcare equation to providers and consumers, as though sick and vulnerable people are actually in decent enough shape to “fulfill their role” and the power dynamics, privilege, and influence were equal.
That’s what that dynamic seems to expect — that doctors and patients are on equal footing. But we’re not. Not even close. They have the power, the knowledge, the influence, the ability to commit us against our will or prescribe treatments that no one else can. They hold the power over our lives and deaths, at times. They hold the proverbial keys to access to information and resources (diagnosis, meds and rehab, for example), which only they can wield in the public arena.
So, expecting patients to be “good consumers” is a stretch. It’s a stretch invented by people who don’t seem anywhere near aware of the inequities of power, influence, control, and knowledge. With great power comes great responsibility. Somewhere, things are falling down.
In my case, it fell down big-time.
My most recent NP knows:
I am the sole provider for my household
I have a dependent spouse who is unable to work regularly and is becoming increasingly disabled
I am being paid 20% less than originally promised, because my employer got acquired, and the new overlords don’t feel like paying out the bonuses I earned (which were included as part of my overall compensation)
I have specific challenges which make my day-to-day more difficult than they “should” be for someone with my base level of intelligence
I have no other reliable source of day-to-day support
Other people who try to help me, don’t have the level of expertise to understand the nature of my difficulties, so they mistake my neurological problems for psychological ones and try to treat me for that
I have to leave work early and drive a couple of extra hours each Monday to get to my sessions (which is a real hardship for me at times)
I have almost no retirement savings, thanks to the organizational problems after my mTBI in 2004
I have many house repairs to make, which will drain what savings I’ve managed to put aside, over the past 3 years. By the time the essential repairs are made, I will have no “safety net” left.
None of these issues are a problem for the NP. They are married to a fully employed spouse, they are on staff at one of the top hospitals in the nation. They teach at a big-ass university that’s one of the top schools on the planet. They have two offices in the same medical building. They live within a few miles of their office. They have the time and the money to take two weeks off to take their family to Paris and other points around the world. They have a PhD, and they present at professional conferences, as well as offer public education sessions. They’re in “thick” with some of the leaders in their field, being trained by some of the top docs. They’ve got a full roster of patients — a waiting list, in fact. And they’ve gotten rid of all their former clients who were on the type of insurance I have, because the insurance company won’t pay them their rate.
So, basically, they’re set.
And I would think, comparing their situation to mine, that they’d at least be able to cut me some slack. If I were in their shoes, I’d make an exception, because it can be done. One client out of tens doesn’t pay full price… big whoop. The difference is easily made up. I know, because I myself have been in many situations where I ran events where some people could pay full price, while others had to get a break. That’s just how things work in the world where I live — some have more money to contribute, while others have less money but other talents to add. You work a deal with people. You make the most of what they have, and if money isn’t one of those things, you find another way for them to contribute.
In this world, inequity abounds. What we do with our privilege and power says a lot about us as human beings. And if you apply the same measures indiscriminately across the board, expecting everyone to operate on your level and chip in the exact same amount of money as the next person, that’s not just unrealistic and unfair, to my mind, it’s unethical. It’s kind of shitty, actually.
So, yeah, I’m not bothering with that NP anymore. I’ve already deleted their contact details from my phone.
Maybe they meant to be shitty, maybe they didn’t. Maybe they’re just overwhelmed by their responsibilities. Whatever. I don’t know what goes on the hearts and minds of others. But I do know that in the patient-doc dynamic, they were the one with the power, and they chose to use their power to disenfranchise me.
I’m just sorry I didn’t see this sooner.
I could have saved myself a lot of money, if I’d just moved on without giving them the benefit of the doubt.
So, I’ve been on this TBI recovery quest for about 10 years, and I’ve had some amazing results. The last neuropsych I worked with marveled at my progress. In 40 years, they had not seen anything like my recovery.
Well, of course not. They’d never worked with me.
The thing is, in all those years, I rarely had a very clear view of exactly what I was doing with that individual each week. Or why. I had my own ideas, of course, but I wasn’t fully aware, I wasn’t fully “online”, and I didn’t have the full capacity to really wrap my head around what all was happening, and why it mattered.
I just showed up each week (sometimes twice a week) and did what seemed appropriate.
Now things are much more stable with me, I’ve got a much better understanding of myself and “how I work”. I also have a good hindsight into what worked for me, and what didn’t.
So, it’s time to start digging in again… see what’s there.
My current neuropsych (NP) has decided to not drop me because of insurance. They actually seem to understand that there’s value in it for me, and I think there’s value in it for them. I suspect that my old NP had a talk with them (they keep in touch), and talked them out of dropping me. Either that, or they just didn’t give it a whole lot of thought before they made that decision.
Either way, we’re going to be working together for the foreseeable future – at least till the end of the year, anyway. And a big part of what we’re going to do, is study my past NP evaluations, to more fully understand what it is/was that I’ve been dealing with. It’s all been a little hazy to me, over the years, despite being so intent on learning more about my situation and working through it. I suppose there’s always opportunity to learn and grow – and I often don’t fully grasp what’s going on with me until years after the fact.
Well, it’s years after the fact. And I’ve got a much better understanding of what the deal is with me, how things are put together, how it affects me, and what I can do with that knowledge to make my life even better.
One of the big areas of focus with me is on my strengths. What do I have going for me, that I can use to offset the difficulties? What are the unique talents I bring to the table, that I can put to good use for myself and others?
This isn’t just about figuring out what’s wrong with me, so I can sit around and feel badly about myself. It’s about finding my relative weaknesses and then matching them up with my strengths, to do something useful with myself.
And take things to the next level.
This isn’t going to be easy, by any stretch, but it’s important work.
It’s Saturday. I get another chance to get myself straightened out, today. This week has been pretty demanding. I’ve got a lot going on at work, and unfortunately, a lot of the people I’m dealing with in other offices don’t actually respond to you unless you “get heavy” with them. I hate that. I hate having to throw a fit, threaten then, cc my (and their) boss, and push them to do what they should be doing from the start, anyway.
A lot of the people I’m dealing with are much younger than I. They’re young enough to be my children (which is a very strange thought, to be honest). And they’re often from the other side of the world. For some reason, they seem to think they know what they’re doing. They don’t. They still have a steep learning curve ahead of them, and they don’t seem to understand just how much I — and others at my level — really know. We’ve already been through their learning curve, and we’ve learned from experience… for 15-20 years more than they.
But do they listen? Do they respect me, and others like me? Apparently not. They love to lecture me about “how things are” and “what’s expected”. Oh my God. I just don’t have time for their strangely supercilious attitude. And — God help me — I have to resort to threats to get them to pay attention, when all I want is for them to work collegially with me and do their damn’ jobs. All I want is to work with people who act like peers, who respect others, who are focused on doing the right thing — not the politically expedient thing.
I know, I know… I’m being unreasonable again.
Well, anyway, it’s Saturday and I have the whole weekend to reset — even more than that, because it’s the Fourth of July next Tuesday, and a whole lot of people will be taking Monday off. So, I effectively have a 4-day weekend (where I only use 3 of those days). I look forward to Monday, actually, to get some things done. To think. To strategize. To get my head together and think about things in deliberate the ways that work best for me.
I’m looking forward to having some time to read and think, for 3 of those 4 days. I’ve been so busy at work and with other projects, I haven’t had time to zero in on my TBI work, lately. That’s been the case for over a year now. When my old neuropsych moved away, I lost a valuable connection that kept me focused on my TBI recovery in some really productive ways. Losing that weekly presence in my life was a significant loss. We do keep in touch as friends (not in a rehab context), but it’s not the same. I need to see if I can incorporate more TBI stuff into our conversations. It’s tricky, though. Not sure how best to do that…
Anyway, for some reason, life feels like it’s opened up for me. I feel less pressure, for some reason. Maybe because I’ve decided for certain that I’m not staying in this current job past the end of the year. That helps. Seeing an end to all this foolishness… it gives me hope. I’ve made peace with it. I’ve done my 2 years of duty here. It’s time to move on. It’s been time to move on… but skipping out on a job before 2 years are up, is generally not seen as a good thing. At the end of this month, I’ll be at the 2-year mark, so that’s my virtual starting line. Then I can start really pursuing other opportunities. And in the meantime, I can still do my work — and enjoy it as best I can.
This past week, I actually applied for a job that someone approached me about. It looked perfect for me in terms of responsibilities and money, and I applied for it. But I never heard back from anyone, so I guess it’s not going to happen. I may “ping” them next week, just to see what’s going on. Maybe they already found someone.
Well, whatever. There are no perfect jobs, and maybe that one would have been a pain in the a$$. I may never know. Just keep moving along. Just keep moving along.
It’s Saturday. The first day of a long weekend (even with that single day in there). It’s a chance to reset my sense of things, to settle in to do some actual thinking about stuff. I’ve been in reaction mode all week, and that’s a real drain.
Time to think. And get some stuff done on my own, rather than wrangling with other people and their issues.
It’s pretty awesome when that happens. And it’s happening now.