It’s been a little while since I last blogged here. I’ve actually been increasingly busy at work. No sooner do I start to think, “I’m out of here…” than I get a handful of projects handed to me that are actually really good for my resume. So, I’ll be around long enough to finish them up. Possibly longer. As long as the job is serving my purposes with keeping my skills sharp and my record clean, I’ll keep it.
No need to bolt. Not just yet. Of course, with the merger happening before year-end, anything could happen, but I’m not racing off… not quite yet.
It’s eerie, though, how the more I intended to leave, the more my boss started to “loop me in” to more projects with high visibility. Some days it seems like they’re reading my mind. How do they do that, anyway?
Well, whatever. I’ve been more busy at work, and I’ve been organizing at home. So, I’ve had less time to blog here.
The whole pace of my past six months has been a little strange. It’s either feast or famine. I’m either slammed with a million different things to do, or I’m in a lull, feeling like I’m twiddling my thumbs (sometimes I literally am). Of course, then I feel the need to jump into action and come up with more things to do, so I get myself busy again… and then when the normal incoming tide of to-do items starts to rise again, I have twice as much to handle.
Funny, how that goes.
Well, it’s better than not having anything going on, I suppose. I’m not sure I could have nothing going on, anyway.
It’s really about balance. And also doing a better job of tracking what I’m really working on. Sometimes, when I am “not busy”, I really should be — I’m just forgetting that I’ve got stuff simmering on the back-burner. Or I’ve flat-out forgotten that I’m supposed to be doing something important. Then I scramble to get it together, and I don’t always do a great job of it.
I can’t beat myself up over it, though. I just have to keep steady, and also do a better job of tracking my activities. I’ve started keeping weekly logs of what needs to be done, what I did in the past week, what I need to do next week. I’ve tried a bunch of different systems, but for some reason, they have all bugged the crap out of me. I think this one is good, though. So far, so good.
And I’m reviewing my lists with my neuropsych, which is helpful. I haven’t done this before, because I was embarrassed that I was really struggling. I didn’t feel like I should be, and my old neuropsych was very intent on making sure I didn’t get bogged down in a lot of negative self-talk. So, rather than admit when I was having trouble, I just didn’t talk about it. And I let a lot of stuff slip through the cracks.
No more, though. No more of that. I want to do well. I want to do my best. Even if that means getting over my self-consciousness and sense of impending failure.
It’s all a balancing act — an act of balance. A deliberate choice to balance things out, and a conscious act to do just that.
Ah, the long weekend. Time to kick back and relax. Go for long walks in the woods. Read a book (because I can!). Do some cleaning around the house, take naps, maybe watch some t.v. — no, not watch t.v. Not during my days off. I really value my time and don’t want to lose it to the television.
I’ll be doing more studying and research this weekend, brushing up on skills, also updating my resume. Just having time to think about things.
My new neuropsych is away for two weeks, starting next week, and it’s a bit of a relief. They mean well, but they’re nowhere near as experienced and helpful as my old neuropsych. They’re still learning — they’re 30 years behind my old neuropsych in terms of life and professional experience, and they’re 15 years behind me, in terms of dealing with TBI.
I’ve been dealing with mild TBI my entire life, so I’ve learned a thing or two. They’re an outsider looking in, and they’re also very much into mainstream medicine, with a point of view that’s very urban, upper-middle-class, intellectual, academic, and aspirational.
I think our class and cultural differences are pretty pronounced. I come from a farming background — rural, self-educated, self-sufficient, and well familiar with hard knocks and having to scrape your way up from the very bottom of the barrel — not once, but many times over. The older I get, the more important this perspective seems to me. And the more annoying it gets for someone who knows nothing about that way of life, to be assessing and judging me and making their best efforts to assist me.
There’s a whole lot I tell this new neuropsych that they don’t seem to “get”. It’s a little frustrating, especially because it’s important background or context information that they don’t seem to pick up. Even worse, they don’t seem very receptive to learning about it, coming to understand it. They’re a bit insecure, to tell the truth, which gets in the way of my process.
If you’re going to do something, then do it with your whole heart, with the understanding that you probably don’t have the first clue what you’re doing, at the get-go… but you learn. You learn.
We all learn. That’s how we grow. That’s how we heal. That’s how we heal from TBI. We learn. We adjust. We make changes and adapt, we apologize for our mistakes and mis-steps, and we pick up and keep moving on. That’s the deal. That’s life. That’s how we’re built, as far as I can tell. So, why not just commit to that very human experience, and go for it?
Why not indeed?
Anyway, the next couple of weeks will give me a chance to settle back down. Working with a neuropsychologist on my various TBI issues — my convoluted decision-making process, my impulse control, my difficulties with focus at work, gearing up for a job change, my challenges at home with my spouse — it’s time-consuming and it can be very tiring. So, it will be nice to have a break from that.
I can just be for a while. Move at my own pace. Not have to figure out how and when to slot things into my schedule. To be honest, as much as it works with my weekly schedule, taking 4 hours out of every Tuesday evening takes a chunk out of my week. And I’m not sure that these sessions with the new neuropsych are really as effective as the ones with the old one.
Then again, I did need to make some changes. I was thinking of terminating with my old neuropsych, six months ago. They they told me they were moving to another position in another area, and that saved me the difficulty of explaining how they were really just annoying me on a weekly basis, and I needed to just take it from there on my own.
It was a boon in disguise.
I do really value the whole process, and it’s important for me to have access to someone with neuropsychological training. So, rather than terminating care, I’ve really been needing to up my own game and take more responsibility for the work, myself.
And that’s what I need to work on, for the next couple of weeks. I’ve been lax about figuring out what I need to focus on, and the times that I’ve showed up completely clueless about what to discuss, those have not had good outcomes. Frankly, they just pissed me off. No excuses here. It was all my doing.
And I need to un-do it. Because ultimately, my recovery is really my own responsibility. They’re just there to help me work through things. I need to get my focus back and quick messing around. I need to properly prepare for those sessions, just as I would prepare for other important meetings. I don’t show up to meetings at work without some idea what I should get out of it. The same should be true for these.
So, there’s my task and challenge for the next few weeks — getting serious and getting lasered in on the issues I need to A) stop creating for myself, and B) start fixing by myself.
I need a little help from my friends, and my neuropsych is the most capable sort of person I can call a “friend” in this specific situation.
So, this new neuropsych is kind of a pain in my ass. And that’s fine. Because the last one could be a monumental pain in my ass, sometimes, and it did me a lot of good to meet with them regularly.
Why, pray tell, would that be so? you may ask?
Well, because dealing with people who are completely off-base is good for my reasoning faculties. And it also shows me how on-track I really am, when someone I’m talking with is clearly not recognizing what’s right in front of them.
This new neuropsych, as I’ve mentioned, is 30 years younger than my former neuropsych. They are 15 years younger than I. And it shows. One of the ways that they really show their age, is that they don’t stop to listen and really understand what’s going on with me, and they jump right into fixing things before they have a strong grasp on what the situation is.
For example, I’ve been talking about how I need some help getting to-do items off my list. I have a ton of things I’ve been wanting to get done, and many things that I intended to do in the first 5 years that I had my house. But less than 2 years in, I fell and got hurt, and I was “checked out” for some time after that. I’m just now — almost 12 years later — getting back to a level that’s near (in some ways) to where I was before. In other ways, I’m nowhere near, and I’m not sure I’ll ever be again. But the basic gist of it is that I need to gear up and take care of things that have been languishing and neglected, lo these many years.
And what does my neuropsych give me, but a sheet of paper where I should write down my goal, figure out my motivation, and then do a visualization about what the reward will be, if I get it done. And then write it down in my planner, and just do it… after doing a little visualization about how rewarding it will be to get it all done.
Oh. My. God.
Someone please help me.
I am so beyond that rudimentary approach, and I need something completely different. But when I tried to explain that to them, they just dismissed me — and insisted that visualizing rewards is a cornerstone of making progress.
Okay. So, that’s their opinion. That’s fine. There’s some truth to it. But I really need help just walking through my priorities and seeing where everything fits in my life. I don’t need motivational help. I need organizational help — and getting my head around the big picture of what I’m doing — and why.
It’s not just about getting things off my plate. That’s important, so I can free up my thinking to handle things that are bigger than a breadbox. But it’s also about prioritizing and getting my head around the complexities of my day-to-day.
Unfortunately, I don’t have a lot of confidence in them, with regards to that. I’m not sure I have a lot of confidence in anyone in the healthcare professions, right now. At least, not that I’ve encountered. I’m sure there are excellent doctors and providers out there, but the only one I found who could actually work with me effectively died last year. And even they didn’t exactly do a bang-up job of covering all my bases.
Ultimately — and this is the amazingly profound irony of it all — it’s the people who need help who are on the hook for making sure we get what we need. The very people who don’t have the comprehensive knowledge about all the physiology and possible conditions that might be at work… and who are having trouble thinking and functioning, to begin with… are the ones who have to manage our situations, be our own advocates, and so forth.
If nothing else, as frustrating as my situation is, it’s good practice for me. I’m not sure I’ve ever felt like people could really wrap their heads around my situation, anyway, so this is not new. I just had unrealistic expectations that I could pick up where I’d left off with my old neuropsych and start there with this new one.
Nothing of the kind. They’re even farther back than the last one, and I feel a bit like Kevin Costner’s character in Bull Durham where he has to train an up-and-coming athlete who has a better chance than he at going to “The Show”.
But I guess that’s how things go, as you get older. I’m just not used to interacting with people younger than myself – especially healthcare providers. But news flash – that’s going to continue to happen, so I might as well get used to it.
Okay – pause – let’s see how my memory for that starting image is doing:
Not too bad — I just forgot the hash marks on the left line, and the circles are a little far apart, with the lines longer and the circles smaller.
I’ll try again later.
Anyway, it all comes back to the idea that when it comes to our health and recovery, we are often on our own. It’s sad, but true. And some days, I feel as though I’d be better off just not even dealing with any trained professionals, because the benefit I get isn’t equal to what it costs me.
Sometimes, it is equal. But you know what? Those are the times when I pull out all the stops and put my focus into my own direction and my own program, just using the experts as a reference point.
I’ve got a few weeks before I see them again. And I’ve got plenty to keep me busy. I’ll figure something out, I guess.
Don’t get me wrong. I have the utmost respect for my new neuropsych. They have great intentions, they are smart — brilliant, really — and they are driven and determined to help people who are in need of assistance. I’m lucky to have been connected with them.
Here’s the thing, though — they’ve got 30 years less experience than my former neuropsych. And that really shows. It shows in their pacing, their approach, their focus. It’s my understanding they’ve been working in clinical settings that have been largely academic, for most of their career, so far, and they’re relatively new to individual clinical practice.
My former neuropsych had 40+ years experience in clinical and rehab settings. I believe they once ran a rehab center, in fact. Or two or three. Anyway, they had decades of high-level experience in rehabbing brain injury survivors, and I benefited from that for the past 8 years or so.
Now I’m working with a “spring chicken” — it’s not the most professionally respectful term, I know, but that’s how they seem to me. They’re 15 years my junior, which just amazes me… And it shows.
Good God, do they have a lot of energy. It’s that kinetic, over-the-top-can-do kind of enthusiasm that people have before they hit a lot of walls, personally and professionally. They have an exuberance and optimism that I used to have, too.
Then I got hurt. And life happened. And a lot of crap came down the pike for me. And now I am where I am now — with a pretty big deficit where all my own exuberance and optimism used to be.
Although… maybe that’s not entirely true. Maybe I still do have that energy — just not to the same willy-nilly degree that I used to. Or maybe I do, and I just need to bring it back. Access it again. Play off the energy of this new neuropsych, who is in some ways like a breath of fresh air, compared to the dour pessimism and personal cynicism that sometimes “leaked through” with my old neuropsych.
Oh, another thing just occurred to me — I’m working around a lot of people who are my age or older. And that’s affecting my perspective, too. I work in an older environment, very established and staid, and compared to my peers, I feel like a spring chicken, myself.
So, I’m balancing out the energy of youth, as well as the balance of age. My new neuropsych is clearly still learning about things like how to pace their speaking, and how to give me space to sort things out. They move too fast for me, at times, and it’s frustrating.
But it’s good to get pushed. Again. After years of being accommodated. I need to be pushed. Quit feeling sorry for myself. Really work on my reaction time. And get back to my memory exercises. See above.
Here, let’s try to draw what I had at the start:
Not bad – I just had the proportions off a little bit, but all the elements are there. The right circle with the “x” is higher than it should be, and the vertical line off it is longer than the original. Also, the hatches on the left line are longer than they should be.
I’ll have to try again later today, and see how it goes.
Gotta get back to doing my exercises. Get myself going. And continue to make progress. Keep moving forward. Keep at it – give myself time to rest – but keep at it.
Yesterday, I decided to do things a little differently, and go for my walk in the woods before I started writing. I intended to spend most of the day working on a piece I started about “chronic blogging”.
I had a lot of good ideas in the course of my walk, but by the time I got back, there were SO many, that I just couldn’t keep up with them all.
So, I went back to bed.
Turns out, my daily routine is a routine for a reason – it works.
I really need to stick to my standard approach of exercise, followed by breakfast, followed by writing… followed by either going to work, or having a good hike. If I hike before I write, my brain gets too muddled, and I lose the benefit I got from the vigorous exercise I did earlier.
Walking is exercise, yes. But it’s leisurely. And it’s not always conducive to my writing. I need to trust my gut and just do the thing I intended to do, to begin with.
Another thing that works for me, is talking through my daily life and logistics with my neuropsych. Not delving into my emotional landscape. Not digging up all sorts of old hurts and pains to “heal” them. I totally understand how that’s helpful. But for my purposes, I really need to focus on my day-to-day and manage the things that are functional problems for me.
I’ve been under the weather and feeling wiped out, in part due to my new NP’s fondness for “exploring emotions”.
Good God. Please save me.
Anyway, I’m not doing that anymore. I’ll set the tone and set the agenda by myself. This NP is quite a bit younger than me, and they’ve got a youthful vigor and excitement for “the hard stuff”. Please. I’m an old warhorse. I’ve done the hard stuff. Now I just need to function.
Yesterday was my last session with my old neuropsych. They’re relocating to a different state and semi-retiring, and they don’t do phone/video consultations, so it’s time to move on.
This is a pretty huge loss for me. Their help really made it possible for me to get through some tough times and mend my broken life. In many ways, they were more of an advisor than a “rehab therapist”, as they had a ton of life experience and in-depth knowledge, and they knew very well how to help me.
Even the times when they were off-base with their approach (which happened now and then), it really helped me to think things through and reach my own conclusions. In some ways, the times when they were wrong, were even more helpful than the times when they were right.
Anyway, it was an emotional parting. I will really miss them.
At the same time, I need to keep moving forward. With this new neuropsych.
I want to do things a little differently, this time. I’m in a very different place than I was in the past, so I’m able to be more creative with my thinking. I’ve decided to put down in writing the things that come to mind, and to make the effort to follow up and really make an effort to explain myself and provide details that get missed along the way.
An hour a week is not a lot of time to cover all the ground I need to cover. My brain tends to “stovepipe” — go deeply into specific areas, to the exclusion of all else. The result is an incredibly rich experience with much greater detail and elaboration than most achieve, but it also shuts out other “fringe” factors that might be worth considering. I get very hyper-focused, you see…
In some ways that narrowed thinking works very well for me, but in others, it gets in the way. And putting things into writing is good practice for sorting out my thoughts in a wider sense and bringing other considerations into play.
So, I’m doing that. Putting things in writing and letting it go. I’m going to be able to cover a lot more territory in writing, than in talking. And this new neuropsych may just learn a thing or two, in the process. I know they’re going to learn more about me – that’s for sure.
And today is a good day. I’m helping my spouse with an event they’re presenting at, and once we get there, I’ll have the afternoon to get some of my own work done. I’ll hang out in the van and write. And edit. And write some more. I’ve got some compelling projects in the works, and now that I’ve said “good-bye” to my old neuropsych, I feel like a lot of my attention and energy has freed up.
Or maybe I’ll just sleep. I didn’t get much rest last night — I got woken up early by an unsettled stomach. Ate too late last night. And didn’t get to bed at a good time.
I just confirmed my neuro follow-up appointment for tomorrow. I had gotten a call from them on Saturday, confirming me for 10:20 a.m. tomorrow morning, but I could have sworn I made it for 2:20 p.m.
So, I called them back this morning, and yes, it is at 2:20 p.m.
2:20 on the 22nd of the month. Gotta play those numbers🙂
Anyway, after that appointment I’m also meeting with my new neuropsych. I did a little research on them over the weekend, and it turns out that they’re about 15 years younger than I (they got their B.A. in 2001 – which is really hard to believe… but there it is). They’ve had their Ph.D. less than 10 years, and they’ve been primarily engaged in group practice work, in an academic lab, so this whole individual thing may be new to them. I know they have worked directly with a variety of different kinds of folks (and they did their obligatory VA training), so it will be interesting seeing how this goes.
I have high hopes.
In any case, it will be great to be getting back to seeing someone on Tuesday evenings. Neuro rehab is really the central organizing theme of my life — improving myself, better understanding my brain, organizing my thoughts, and also figuring out how to deal with my spouse as they decline… it’s all part of it. And it helps to have a working relationship with someone who is a professional — no personal strings attached, no implied reciprocity, no emotional entanglements… just someone to talk things through with, who has an expert outlook on it all.
So, I’m gathering my thoughts for tomorrow. I need to take my bloodwork numbers from the past years, so they have something to compare to, and I need to collect my questions about my MRI images.
There’s a lot there I’d like explained. And this neuro is the only person I know who can explain it for me.
So, tomorrow is a new day. Literally. And it feels pretty danged good to be starting something fresh.
There are nearly 2 weeks left in Brain Injury Awareness Month, and I’m feeling as though I haven’t done nearly enough. There is so much to discuss, so much to investigate. The whole realm of TBI recovery is incredibly rich with data and experience, and there are as many variations on the themes of injury and recovery.
Now, if you’re a student looking for a field of study that’s dynamic and ever-changing, and has a direct positive impact on people’s lives, go into neuroscience — neuropsychology. Brain injury research. Brain injury recovery research. It’s relatively new — nascient — and people are finding out more and more every day.
Indeed, we know so little about the brain, and we learn something new on a regular basis, the sky’s the limit for areas to look into. There’s so much involved in our neurology, and so much variation and interconnection and cross-pollination in all the issues that go along with it, that it’s literally an infinite field.
If anything, the problem is more about narrowing things down — picking an area of focus — than it is about finding what’s out there to explore.
You can pursue medicine. Or psychology. Or research. Or psychiatry. You can pursue physical fitness or physical therapy. Occupational therapy. Vision, hearing, movement… cognition, emotion, philosophy. You name it, the brain’s got it. And someone, somewhere is going to need help with it.
…Because there is no shortage of people who have had brain injuries. Millions of Americans are concussed every year, and that’s not even including all the moderate and severe brain injuries… or the strokes, aneurisms, tumors, and other disorders that muck with our wiring.
People talk about there being a brain injury epidemic, and I suppose that’s true. But brain injury is such a part of our collective experience, it seems more like just another wrinkle in our lives, rather than a sickness.
It’s just there.
And there’s an awful lot of it.
So, if you’re a student and you’re looking for a field to go into where you can make a real difference, consider brain injury research, treatment, or rehab.
You’ve got an audience of millions hoping for more people like you to show up and help.
I am thinking a lot about losses, these days. Loss of friends, loss of doctors, loss of family, loss of jobs, loss of money, loss of hope.
I’ve been actively working on my brain injury recovery since 2007 — nearly 10 years. I got hurt at the end of 2004, so it’s been over 11 years since my last TBI. And my expectations and hopes have varied, during that time.
I always expected to be able to build back my abilities to at least some extent. I expected to be able to be able to retrain my brain to build back my memory, to address my distractability, to handle my fatigue, and basically all-round get myself back to where I wanted to be.
But that hasn’t happened. The one area where I have significantly improved, is in my gist reasoning, which is really the biggest “functional” deficit I had. Not being able to see what ideas are important in a sea of details is one of the most debilitating effects after mild TBI. It’s also a better predictor of how well people “deal” after mild TBI.
Even if we look great on other scores, even if we only have a few measurable deficits, if our gist reasoning is not great, we’re far more likely to suffer and stumble and have troubles. Nothing seems to make sense. Nothing seems to fit together. And we make one mistake after another, miscalculating and mis-reading cues in ways that really make our lives (and others’) very difficult.
And for no apparent reason.
It’s a hidden thing. And it’s a real problem. On top of that, it’s not recognized as “a thing” by a lot of folks. One refrain I’ve heard repeated, over and over from my neuropsych, is that I only have a few measurable deficits, and they aren’t even that terrible, so I should be able to get back to my life without too much struggle. It’s been kind of demoralizing, hearing that each week, as things just didn’t seem to fit together for me. Yes, my tests said that I was supposed to be in good shape — better than I felt I was. Yes, my tests said I have just a few deficits. But nothing made any sense.
It just didn’t make any sense at all. And it’s been constant work for me to get myself to a point where A) I don’t feel stupid and lazy and useless, and B) I actually understand the nature of my issues and can deal effectively with them. I’ve worked at it, I’ve really concentrated on it, and I’ve made some pretty amazing progress, actually. Even more than my neuropsych ever expected.
The thing of it is, if I’d listened to them and just and said to myself, “Well, my measurable deficits really aren’t that many, and relatively speaking, I haven’t been impacted nearly as badly as other people have,” I might have just sat back and not worried about it… and kept screwing up. I probably never would have made this much progress. I wouldn’t have had a need to. I could have just scaled back my discontent and kept my sights lowered, and eventually just settled in to working around the specific problems I had.
But a focus on the specific problems is a huge problem — especially with gist reasoning. It completely misses the point. Gist reasoning is about bringing everything together to sort through it and make sense of it, and if you just think about (and disregard) the smaller pieces, it’s not going to help you build overall strength in your gist reasoning.
So, just looking at my handful of small deficits wouldn’t have helped me at all. At the same time, sitting back and saying, “Well, I’m not nearly as bad-off a other people are, so I should just get on with my life and not worry about it,” would have put the kaibosh on my progress. Because in fact it’s the combination of taking those small things seriously and tweaking them — within the context of my overall functionality — that kept me going over the years.
And it still does.
Now I am changing neuropsychs, and it will be interesting to see how they approach things. I’m a lot less concerned than I was before, because I’ve been thinking about all the ways my old neuropsych was wrong, over the years. I’ve always felt that dealing with their wrong-ness was even more helpful than dealing with how they were right. It’s been an important process for me, to really think through what they’ve told me, and decide for myself if they were right or wrong. And the times when they were wrong – oh, so wrong – have been pretty educational for me.
So, yes, they can go, now. Sure, I’ll miss them. But it’s not the end of my world – it’s the end of one part of it, and the beginning of another.
My watershed week continues. It’s been a full week — I had to get my furnace serviced on Monday, because the pump that circulates the hot water through the registers was broken and overheating, which is why it was shutting down after running for a few minutes at a time.
Wednesday, I had another training to be a tour guide at a local park. We’ve got a few days allocated at work each year to donate to a cause of our choice — I chose some outdoor tour guide work at a place I love, which was also on the list for volunteering. It’s a significant step for me, because I have to study up on the park, its history, and all the wildlife and plant life there, so I can tell people about it. And then I’ll need to train with another seasoned tour guide, to learn the ropes and understand how best to talk with people.
I decided to do this because I need to get out and be more social with people, but I don’t do well in unstructured situations. I don’t always pick up on people’s social clues about when to talk — or when to stop — so it gets awkward. But if it’s in a structured setting, and there’s a time limit and I can follow a sort of “script”, I’m good.
Wednesday was the second of three trainings, and even though the weather was dicey, I still went, and I’m glad I did. It seems as though there are a number of folks exactly like me there — nature nerds who love to learn new things and share them with others.
Yesterday, I had my appointment with the new neurologist, and it went even better than I’d hoped. These folks are really on top of things — and even better, when we talked about the diagnostics and the imaging I’d had before, they didn’t even bother looking at the MRIs. Because for someone with my history of brain injury, they are not the right kind of MRIs. They told me that DTI is really the only way they can look at the actual connections in my brain — the axonal connections (signs of past shearing), as well as possible micro-bleeds.
I am so excited – it’s taking a monumental effort to resist typing this in all caps.
But I’ll resist, out of courtesy.
This is an incredible relief. Because it signals that these people actually understand what the hell is at the root of my issues. And they also know that a standard-issue MRI is not going to show them what they need to know. I will need to travel to the one facility in the extended area that has the equipment to do the DTI-MRI, but I’m more than willing to do that. Heck, I’d walk there, if need be. I had been hoping that something like this might happen for me. And in fact, I was thinking of getting the imaging done myself, while I still have good insurance, and then hiring a consulting doctor/radiologist to interpret the findings for me. I know of some resources for finding doctors/radiologists online who can interpret test results for you for a pretty low sum. At diagnose.me I paid $50 to have a radiologist from Vienna to take a look at my two prior MRIs and do a comparative analysis and tell me what they saw. So, I could cobble the steps together and use them again, if need be.
But now I don’t have to do that, and I actually have a very experienced neurologist (who specializes in sports) who will look at all the imaging themself and interpret the results for themself. Imagine that. Even though I had to take half a day off work and drive a ways through traffic and bad weather, it was well worth it. I’d do it all over again, in a heartbeat.
This DTI-MRI and the other tests I’ll be taking — for my autonomic nervous system function, as well as an EEG to check out how the electricity is flowing in my brain — might actually be my chance to figure out just what the hell is going on with me, and get past all the psychobabble that abounds. All the best guesses, based on personal observation and interpretation, make me nuts. (That’s the engineer in me talking.) I need hard data, numbers, actual images, to understand things — and so does everyone else. When you rely on human interpretation of signs and symptoms to assess someone’s difficulties, you open yourself up to way too much margin for error.
That’s one of my chief complaints with my neuropsych. Although they mean well, and they have some pretty amazing domain experience, and they have helped me tremendously, their interpretations of what’s going on with me have been an on-and-off source of aggravation. If they weren’t the only person I have regular access to, who is a highly educated professional who can talk at length about things other than politics, Game of Thrones, and Kardashians, I probably would have dropped them some time ago. But when I meet with them, I get to exercise my mind, as well as my brain, so it’s been very useful in that respect. They’re smart enough to know that I’ve done the lion’s share of my recovery, myself, so there’s no illusion about them having a Svengali-like hold on my poor little mind (as some therapists have fancied themselves). At the same time, though, their cultural biases really come through.
They interpret my experience along their own lines — as someone who grew up in a very secular, culturally homogeneous urban area, surrounded by professionals, and living a very entitled life. Whereas, my experience is that of growing up in both a racially mixed, working class urban area, and a deeply religious rural area where the optometrist, dentist, and doctor were the only professionals you ran into on a regular basis — and with them, maybe a handful of times a year. The conceptual gaps between our worlds are long, wide, and deep, but they don’t seem to realize it. And when I’ve tried to raise that as an issue, they flatly denied that it could play a role.
News flash – it does play a role. A huge one.
But that’s going to be changing in a month, because they’re leaving. And today, I’m meeting with their “replacement” — a neuropsych who comes highly recommended. This could be good, because this new NP is not from here. They’re an immigrant from Eastern Europe, and they don’t speak English as a first language. That’s good, because while they are highly educated and they teach at a university in a nearby state, they probably won’t take as much for granted, as my old neuropsych. I’ve lived overseas and also worked a lot with folks from other parts of the world, and I actually find it easier to talk to people who come from a different place and speak a different language.
When you don’t assume that you know, you pay attention more. When you realized that you could be misinterpreting what someone is saying, you listen more closely. It was like that when I was living in Europe, 30 years ago. And that’s how things were when I had to travel to Europe in my old job, 3 years back.
So, that third Big Event is happening today, and I’m pretty stoked about it. I’m also stoked about finding some very cool new reading — and that I actually can read it.
Five years ago, I had no confidence that this would ever be the case. I took what I could get, and I made the best of it. But this turn of events now is just huge for me. It’s like a new chapter is turning over in the book of my life.