When more stuff falls apart

1923 broken down car with wheel off
Sometimes, a wheel just comes off

I’m back.

But you probably didn’t notice, because I’ve been only intermittently blogging here for the past months – maybe a year or so? Life got… interesting. Work has been a drain and a challenge. There are multiple illnesses in my family. And I need to help out.

So, I help out.

I’ve got a disabled sibling with a child who’s in and out of the hospital. I haven’t done a good job, at all, of keeping in touch and offering support. I’ve been trying to do more of that, lately, but it really takes a toll. And now that sibling’s partner is having health issues, as well. So, that’s yet more of a drama scene.

And now my parents are having problems. Serious, possible-surgery problems. I spent the past 4.5 days with them, helping them get sorted out with doctors, getting their paperwork together, talking them through their options, and talking to a friend who is helping a lot. It’s a whirlwind with them. My parents are high-energy, always-on-the-go types, who live a very active lifestyle with lots of friends and activities. It’s exhausting just talking to them, let along living with them for a few days.

But mission accomplished (for now). We got all their paperwork taken care of, got them set up with the medical portal so they can connect with doctors and see their test results, hooked them up with a new smartphone, so they can have a GPS, and also look things up when they need to. And just reassured them that I and my spouse will be there for them when they need us. They’re a 7-hour drive away, so it’s not exactly close by. And my spouse is having a lot of mobility issues, which slows everything down.

I slow things down, too. The fatigue is just crushing, at times, and when I  push myself, I can get cranky and perseverative. I’ll start to grouse and get stuck on a single angry thought and just hammer that proverbial nail, till the board around it splinters. We had a couple of instances where I lost it over what was really nothing much, got turned around and confused, took wrong turns, got combative… mainly because I was bone-tired and worried about my folks.

On the way down, we added 1/2 an hour to our trip, because I got turned around and missed my last exit. My spouse was talking to me about a number of different things that had nothing to do with the drive, and it distracted and annoyed me, at just the time when I was trying to figure out where I needed to turn. I was tired, which makes my brain work worse, and it was dark, which didn’t help. We were also in a part of the country that’s changed a lot in the past years — and we hadn’t been in that area for over two years, so I was even more disoriented. I missed my exit, couldn’t see where to go next, and my spouse was getting really upset at me for not offering anything constructive to the conversation — which had nothing to do with driving.

I appreciate the vote of confidence, that I can do more than one really critical thing at a time, but I wasn’t in any shape to do anything other than drive the car and get to my parents’ place, so as for conversation… yeah, it wasn’t happening.

We ended up having a blow-out fight over it, which often happens whenever we make that trip to see my parents. There’s a magic point around 7.5 hours of driving, when both of us hit our limit, and any discussion we have turns into a lot of yelling.

Fortunately, we did manage to get over it before too long, and we did get to my parents’ place 9 hours after we left the house. At least we were safe, which was the whole point. And we had a good 4.5 days ahead of us to just chill out and focus on my parents.

On the way back, I got turned around again. I was tired from the trip, and I was confused about pretty much everything. I hate when that happens. It’s a little difficult to maintain your dignity, when you’re bumbling around in a fog. I felt like I was swimming through a bowl of thick tapioca pudding with ankle weights on. My brain just was not sharp. I was foggy and fuzzy and my reaction time was really terrible. I’ve been in better shape, but we had to get home, and my spouse was in no shape to drive, either. Plus, they don’t know the area we were in. So, I had to suck it up and get on with driving. Focus – focus – focus. Pay attention. Watch my speed.

And sure enough, 7.5 hours into the drive, things started to devolve. We were trying to figure out where to buy some eggs and milk and bread before going home. We didn’t have anything fresh in the house, so we had to get some groceries. Driving along, I came to a major fork in the freeway and I had to choose between the left branch or the right, so I decided on the right side, then realized a few miles later, it was the wrong choice. My spouse was pretty pissed off, and yelling ensued. Again.

But I remembered what an ass I’d been on the way down, so I pulled over on the shoulder where it was safe, checked my smartphone, found a grocery store that was open till midnight, and used the GPS on my phone to get there. My spouse was pretty anxious and turned around, too, which made them even more combative. And that wasn’t any fun. But when I followed the instructions of the GPS (almost turning the wrong way onto a one-way street, in the process — it was dark, after all), I got to the store by 10:50, which gave me more than an hour to find and buy the 10 items on the list my spouse made for me. I was in and out in 15 minutes, which was good. Heading out again, I took another wrong turn (even with the GPS telling me what to do – ha!), but I turned around and found my way back.

And we were home before midnight… without too much bloodshed, fortunately. I remembered how hard it had been for me when I lost my temper, while we were driving down. It was bad enough that I felt terrible, felt like a fool and an idiot, and my self-confidence was totally shot. But allowing myself to get angry and vent, to let things escalate with me and “defend myself” from my spouse’s “attacks” actually just made things worse. Even though I was totally justified in my response, it made everything harder for me to think, to process, and do the things that would build up my self-confidence, as well.

It’s all a learning experience, of course. So, I can’t be too hard on myself. It’s one thing, to make mistakes and mess up. It’s another thing to give in to the circumstances and let myself blow up… and never learn a thing in the process. I have to just keep my head on straight, study my situation, watch my reactions and behavior, and learn how to manage myself better. What other people do is one thing. But I need to pay attention to myself, to keep myself as functional as possible — based on the lessons I’ve learned from my past experiences.

It was an exhausting trip, and I’ll write more about that later. I’m still digesting the whole experience, and it’s clear I need to make some changes to how I deal with my parents. They need help — and they need the kind of help that only my spouse and I can offer. Everyone around them is pretty depressive, and some of their friends are distancing themselves from them, because they’re afraid of all the implications of a life-threatening condition that needs to be dealt with.

This is very hard for my folks, because they’re so social, and it’s hard for them to be ostracized, just because of illness.

It happens, of course. I could write a book about how that happens. It happened to me after my last TBI, when I couldn’t keep up with the social and work activities I’d done for years prior. People sensed a vulnerability in me, and it made them uncomfortable. They also sensed a change in me that made them uncomfortable. And since I wasn’t always up to the levels I’d been at, before, they drifted away. I talk about that in TBI S.O.S.Self Matters To Others. Who people know us to be, is also a big part of who they understand themselves to be. And when we change, a part of their world goes away. That’s not easy. But it happens. Not only with TBI, but with other injuries and illnesses, as well.

Anyway, I’ve gone on long enough in this post. I’m back from the visit with my parents, settling back into my regular routine, with some changes. I called my folks, first thing this morning to check in, see how they’re doing — and also pick them up a bit. I need to make this a regular routine, because that’s what works for them. Plus, it’s just nice to talk to them.

I also need to take care of myself, because this is even more demand being placed on my system. And it’s not going to get simpler, anytime soon. So, keeping myself in good shape, stepping up and being responsible about my issues… that’s a big part of what I need to do.

As I said, that’s enough talking for now. I’ll have plenty more to discuss, on down the line.

Sometimes the wheels come off. And you just have to figure out how to deal.

Onward.

The MTBI Downward Spiral

I’ve written before about how ignorance and narrow-mindedness produce greater disability than injuries alone.

TBI related issues like increased distractability, lower thresholds for anger, and sleep disruptions, the cascade of behavioral and logistical effects can create subtle cracks in the foundation of your everyday life, which ultimately compromise your ability to get on with your life in a mature and responsible fashion, even your physical and mental health.

Here’s how you can get into trouble, thanks to a TBI:

  • TBIs have a nasty way of slowing down your thought processing speed.
  • Sleep disruptions have a nasty way of resulting in increased agitation and distractabilty.
  • Increased distractability can lead to “careless mistakes”.
  • These can lead to arguments with others.
  • Arguments can escalate if your flashpoint threshold is low.
  • A low anger flashpoint threshold can become even more explosive if you’re tired and not thinking well.

For example — say a guy with a wife and two kids and a good job is in a car accident and smacks his head against the car window. I’ll call him (Car Accident Guy.) He’s knocked out for a few minutes, and when he comes to, the EMTs take him to hospital, check him out, determine there’s no serious damage, and turn him loose. He goes  home and lies down for a while, then the next day he’s up and at ’em again, ready to get on with his life and just relieved he wasn’t hurt worse in the accident.

He seems fine to everyone at home and at work — the only problem is, all of a sudden, he can’t seem to do the simplest things — like going to the store. Or completing a job his boss assigned to him. He keeps getting distracted by the simplest things, and when his wife sends him to the store to pick up milk and bread and his prescription refill, he ends up coming home with milk and eggs and shampoo, instead. In the process, he runs out of his daily dose of blood pressure medication, and his wife is upset, impatient and pissed off at him.

His wife tries to overlook his forgetfulness at first, but after a while, she starts to get pretty fed up with this guy. They quarrel and bicker, and he becomes nastier and nastier when they fight. He takes it out on his kids, too, yelling at them when they do things like turn the t.v. up too loud or come home late for dinner.  His wife’s patience gets shorter and shorter, and she feels like she has to double-check everything he does. He used to be so reliable, but now he’s just not trying… What’s wrong with him?

At work, things are getting tougher, too. Car Accident Guy’s boss has been noticing how he’s not delivering results when he promises he will. The reports are late. The analysis is incomplete. And he’s started making stupid mistakes he doesn’t even catch till someone brings them to his attention. Even when folks do show him how he screwed up, he’s contentious and argues about it, and his relationships with his co-workers seems caught in a downward spiral. His boss tries to talk to him, but he can’t seem to sit still in their meetings, and he keeps changing the subject or talking about other stuff that has nothing to do with what they’re there to discuss.

All the while,  Car Accident Guy has been missing his daily blood pressure dose, and his BP has been climbing — especially when he’s angry. He seems even more angry than usual, in fact, and his wife finally prevails on him to see his doctor. When he goes to the doctor, his blood pressure is way out of control, and his doc becomes very upset with him for not taking his daily dose. The doc considers him non-compliant and lectures him, and Car Accident Guy takes issue with his tone and snaps back at him. The doc, who has had a long day and isn’t in the mood for this crap, puts him on notice that he’d better clean up his act, or else. Car Accident Guy is immediately sorry for the tone he took with the doctor, and he apologizes and promises to do better. Feeling self-conscious, he tries to listen to the doctor and get what the doc is saying, but he can’t seem to focus, and he loses the piece about needing to schedule a stress test in six weeks. He takes the new BP med prescription from his doctor and puts it in his shirt pocket — but he’s distracted by what the doc is saying to him, so he isn’t actually aware of which pocket he put the script in.

Done with the appointment, he sails out of the office, forgetting to make the appointment for the stress test, trying like crazy to recall — from memory — the exact content of the his visit, so he can be sure to get himself back on track.

When he gets home, his wife asks him how the appointment was, and he has trouble remembering. He tells her it was okay, but when she asks him what the doctor said, he can’t remember exactly, so he avoids her question. She senses he’s covering something, and she’s concerned that there’s something seriously wrong with him that he’s not telling her. She becomes anxious and starts to press him for details, which he cannot recall exactly. He snaps back at her, and the conversation escalates to yet another argument.

Exhausted and frustrated, he stomps off to bed, tosses his clothes in the hamper, and sleeps the rest of the day. While he’s sleeping, his wife does a load of laundry — including the shirt with the prescription in the front pocket.

When he wakes up, Car Accident Guy remembers he needs to take his BP meds, and he also remembers he needs to get his new prescription. He can’t remember where he put the script, exactly, but it must be in the clothes he was wearing at the doc’s office. Unfortunately, his shirt and pants have gone through the laundry, and the prescription is in soggy tatters in the washer. Furious with himself and furious with his wife, Car Accident Guy flies into a rage and verbally attacks his wife, his kids, anyone who is nearby. He drives off in the car, calling his doctor on his cell phone for a new script.

The doctor is noticeably irritated, and he thinks Car Accident Guy is not committed to taking care of himself. He writes another script and faxes it to the pharmacy, so his patient can pick it up. Car Accident Guy thanks the doctor and heads to the pharmacy, but on the way there, he’s distracted by a yard sale along the road. He pulls over and spends an hour and a bunch of money buying some pieces of furniture he doesn’t really need, but that look nice and are available for a good price.

He loads the furniture in his car and heads home. When he gets there, his wife is still angry with him, and she’s packing to go to her mother’s house with the kids. In the meantime, his anger has completely dissipated, and he doesn’t understand what she’s still angry about. He also can’t understand why she isn’t pleased with the bargains he found. She asks him where his prescription is.

“Prescription?” he asks…

That’s more or less a cause-and-effect narrative of what can happen, just from a couple “simple” problems like sleep disruption, distractability, and lower anger thresholds — all of which are common in TBI. Even MTBI (supposedly “mild”) can produce life-wrecking after-effects. Believe me. I’ve lived it. I know. Car Accident Guy’s story is not terribly different from my own, though my own circumstances are different — still, the types of problems mulitiple MTBIs have brought me are not that different from these.

It’s eerily easy to end up in a downward slide — in no small part due to sleep issues, which contribute to distractability, which contributes to frustration, which contributes to lowered anger flashpoints.

But in the same vein, being aware of the issues up front, makes it eerily easy to avoid situations like this.

Getting enough sleep is a start. Being mindful of your energy level is another. Keeping notes about what you need to do is yet another. And stopping to check in with yourself and double-check your work is yet another.

TBI, even mild traumatic brain injury, can totally screw up your life. The good news is, it doesn’t have to.

Dangerously dizzy… but life won’t wait

I’ve been increasingly dizzy, the past few days. My left ear is squishy and has been making its presence felt. Pressure in my head, and fatigue… I haven’t had good sleep hygiene, for the past few weeks, and it’s catching up with me.

It’s a scary thing, because it’s so disruptive for my daily life. I have things to do and stuff to accomplish, but if I stand up too quickly or move too suddenly, the whole world starts to rush and spin and I get very sick on my stomach. It also makes me extremely irritable, so I snap out at every little thing, which makes me very difficult to deal with at times.

The only thing that really saves me, is being totally focused on what I’m doing, and not moving much while I’m doing it. Working at the computer is a perfect solution for me, because I have to sit up straight and stay focused on the screen in front of me.

The only problem is, it’s Saturday… a few days before I take off on my marathon trip to see family… and I have a whole lot to get done. Dizziness puts me in more danger of falling or having an accident. If I’m not careful, I can get in a lot of trouble. The last thing I need this holiday season is another concussion — most of my adulthood injuries have coincided with holidays, when I was running around like a chicken with my head cut off and wasn’t paying proper attention. I was fatigued and disoriented… and I fell or had a car accident. Not good.

Yes,  I need to be very, very careful, in everything I do.

I think a big part of the problem I’m having right now is the impending holiday rush. The prospect of driving through several states to see multiple families, over the course of nearly a week is making me a little nervous, and that’s setting off my schedule and my focus.

I have been doing really well with keeping to my daily exercise, which helps.  I just finished my morning workout, in fact, and I feel noticeably better than I did before it. I worked up a sweat and got my heart pumping, which in turn moved the lymph through my system to clear out the grunge. I love lymph. So basic, so essential, so useful. Without it, I’d be in a heap of trouble, and I count my blessings that I don’t have lymph drainag problems, like folks with edema do.

Anyway, I’m feeling better, and I have a full day ahead of me. But I’m pacing myself. And I’ve blocked off time this afternoon to sleep. I haven’t had a good afternoon nap in weeks, and it’s taking its toll. If I don’t nap at least once over the weekend, it catches up with me — and that’s what’s been happening.

And now I’m really dizzy, with a lot of stuff to do, and I regret doing chores last Sunday, instead of taking my nap. I had three solid hours to myself, to use as I pleased, and I frittered away the time on futzing around and doing little chores that took longer than I expected.

Ah, well,  so it goes. At least I’m aware of my dizziness, so I can accommodate it and work with it. When I’m really, really dizzy, I find that keeping my posture ramrod straight and moving very slowly and deliberately helps tremendously. Also, if I sleep a lot and drink plenty of fluids and avoid sugar, that helps, too. I’ve taken medicine for vertigo, but it didn’t help a bit. Anyway, it turns out the medicine is really just for nausea that results from vertigo, not the vertigo itself — at least that’s what the PCP I had at the time told me. Come to think of it, they could have been wrong. They were a bit of an idiot, by average standards. (And it was a scary six months in my life, when they were my primary doctor.)

But now I’ve got a pretty good PCP, and I trust them a whole lot more than the last several I went to. Trusting your doctor is good. It simplifies a lot of things, in many ways, not least of which is the office visit experience.

But more on that later. Right now, I need to stay focused on my dizziness.

Tracking back over the past week, as it’s gotten steadily worse, I have been looking for what I’ve been doing differently that has contributed to this. The one thing that I’ve been doing regularly, that is very different from before, is that I’ve been eating pieces of chocolate to keep myself going. Not just chocolate, mind you, but those little Dove chocolates with peanut butter in the middle. I thought that the peanut butter would give them more staying power, but what I’ve noticed over the past week is how much sugar is in those little puppies.

Zoinks! Who eats this stuff regularly?! They’re dangerous! Sure, they give me a little pick-me-up when I need it — like driving home late from work when it’s very dark, I’m very tired, and I’m having a hard time seeing. But I’m finding that when I eat one, I crave another one about 10 minutes later — like I spike, and then I crash and am worse off than before, so I need another “little” piece of candy to keep me going… and my system gets totally fried by all the sudden, extreme ups and downs.

Which contributes to my fatigue… and apparently my dizziness.

Not good.

So, while I’m doing my errands today, I’m going to remove the chocolates from my car — just throw them out — drink more water, eat more fruit, and be very, very careful when I’m out and about.

The last thing I need is another accident or fall.

Oh, the uncertainty…

I came across this quote today:

“You see, one thing is, I can live with doubt and uncertainty and not knowing. I think it is much more interesting to live not knowing than to have answers which might be wrong. I have approximate answers and possible beliefs and different degrees of certainty about different things, but I’m not absolutely sure of anything and there are many things I don’t know anything about, such as whether it means anything to ask why we’re here …. I don’t have to know an answer. I don’t feel frightened by not knowing things, by being lost in a mysterious universe without any purpose, which is the way it really is as far as I can tell. It doesn’t frighten me.”

– Richard Feynman

Well said, Mr. Feynman. I, too, can live with doubt and  uncertainty. If nothing else, there’s only one thing I actually can be certain of — that along the way, there will be plenty of doubt and uncertainty. Then again, maybe there won’t be 😉 And the idea of “being lost a mysterious universe without any purpose”… well, that’s not unfamiliar to me.

I’ve been having a bit of existential angst, lately, and it seems to me that, rather than having the universe (or even our lives) “pre-loaded” with purpose, it’s our job to provide the purpose on our own. Free will and all that. Seems to me, that if someone or something else is supplying the purpose for us — and it’s just our job to live up to it — then it really cuts back on the amount of self-determination, even free will, that we have to exercise. Personally, I’d rather come up with the purpose on my own.

Anyway, I had an interesting discussion with someone close to me, a few months back. We were talking about faith and religion and what religious orientation we were. I said that I believe a lot of things, but I just believe them — I don’t pretend to know them for sure. And ultimately, I had to say, I really am an agnostic. It’s not that I don’t hold to any creeds or tenets — I do. I’m just all too aware that I could be wrong.

It really bothered the person I was talking to. They’re the kind of person who needs a lot of certainty in their life. They require it, in fact. I guess they grew up in a very uncertain environment, where their parents’ unpredictability was literally life-threatening for them, at times. I think that’s shaded their view of life a lot.

Well, I had a very uncertain childhood, too, but most of the life-threatening uncertainty took place outside my home. Inside, there was plenty of pain and struggle, but I can’t say that it was life-threatening… Maybe that’s saved me.

Anyway, yes, I am very comfortable with not knowing a lot of things. Knowing them, in fact, would probably depress the crap out of me, because the mystery would be gone, and for me, mystery is the nectar of life. It sweetens the experience and gives me something to look forward to discovering. Doubt, too, is an essential part of my life, for it keeps me honest and keeps me paying attention.

It’s the absence of certainty that makes things the most interesting for me. The utter, total lack of surety that I feel whenever I approach science or medicine or philosophy or religion, is what entices me to come closer… They seem (to me) to be disciplines pursued by individuals passionately dedicated to infusing life with certainty, yet at their very core, they do exactly the opposite, constantly evolving and turning over their own “proven” tenets, when they are at their most honest.

That contradiction, the overturning of “certainties” and the tearing-down of prior assumptions is where things get the most interesting for me. And the folks who dedicate their lives to the uncertain science of self-challenging discovery really comfort me with their openness. At the same time, the folks who ply their scientific and medical and religious trades with an air of absolute certainty strike me as being the least reassuring, especially when they sit across from me behind their big wooden desks and proclaim “beyond a shadow of a doubt” that such-and-such a diagnosis or prognosis IS SO.

It’s a problem, that discomfort with absolute “certainty”. For my doctors, and for me. They’re trying so hard to convince me that they know what they’re doing, and the harder they try, the less I believe them, because they seem so unwilling to leave room for error. Or maybe that’s required by their malpractice policies. Who can say?

The more I think about it, the more I realize that this doubt of mine, this comfortability with doubt and uncertainty, and my willingness to entertain different approaches and different positions and different “diagnoses” is one of my biggest points of friction with the folks in my life who present themselves as experts. For me, expertise isn’t so much about being in possession of the right answers, as it is having mastered the fine art of asking the right questions and being open to new possibilities, and being willing to do what needs to be done, to get to a workable solution/response/alternative to a sticky problem (aka, me).

It’s not about having one single answer (or more than one). It’s about having the capability of asking the right questions and being entirely open to the possibility that there is no single answer (or more)… and that life is a big-ass mystery, so there you have it. It’s about having a firm enough grasp on reality that you can see that you cannot possibly know much of anything for sure, because the world is an infinitely huge place with tons of plausible possibilities, and — tell me again — why is it so necessary to be ABSOLUTELY POSITIVELY RIGHT ABOUT EVERYTHING ALL THE TIME?

I’m rambling, I know. Taking advantage of your (perhaps) overtaxed patience… I apologize for that. But the bottom line I’m trying to get to is in keeping with the nature of this post — for me, there is no ultimate answer, there is no final proclamation, there is no silver bullet. And (since I might be wrong), if there is, I don’t want to know about it. I like having things open-ended. I like having things unresolved. Deep down inside, all my bitching and moaning notwithstanding, I like having a really unsettling level of uncertainty in life, and I like constantly seeking out answers.  It’s the journey I enjoy… not so much the final arrival at the destination. For me, the destination keeps changing, keeps shifting, keeps morphing into something quite different than it was last week.

So long as I can keep up with my rest and not completely fry my system with pointless excess and rank stupidity… so long as I can remember that I am, after all, very human, and nobody’s got this human thing all figured out… and I can remember that I’ve gotten clunked on the head often enough to shear and shred the neural connections that other people tend to take for granted… well, I can accommodate the confusion and the uncertainty and the mystery of it all. I can cut myself a break and pace myself and just keep on keeping on as best I can. I can let myself marinate in that divine uncertainty, that heavenly bliss of who-knows-wtf-is-going-on (and who cares?) And I can let the rest of the world do its thing, as well.

At the end of the day, I guess what matters most to me at this particular point in time, is not so much specific outcomes in undertakings in my life. What matters most to me is the process I go through to get where I’m going. I may never arrive at exactly the “right” place, or achieve precisely what I set out to. But if I’m true to myself, to my heart, to my convictions, and I don’t let the meanness of the world get to me… if I can manage to make room for love in my life as frequently as possible, and I can extend a helping hand to others along the way… then wherever I end up, and whatever shows up on down the line, will have its place.

Mystery.

Discovery.

And more.

All Good.

Getting on with just living life

I had a good session with my New Therapist (NT) today. They say I seem to be doing really well, and I’ve really turned around my feelings about work and my ability to deal with the stress, with “lightning speed”.

I guess that’s gratifying… I almost question it, however. No… wait. I don’t question it. I have come to terms with a lot of difficulty in a really short time, and it feels good.

Now, if I can get my head together around my neurologist…

Basically, I’ve been seeing a new neuro for some other issues I’ve been having, but they’re proving to be less logistically helpful, and they seem to think that my difficulties are psychological.

Ah, yes… that again.

I suspect — if I turn out to get a regular neuro at all — I’ll end up going to someone with a whole lot more familiarity with TBI than this one. I’m still looking for someone who can help me with the neurological aspects of my situation, but I’m not getting much support, either from the medical community or my partner and some of my friends, who would just love it if I just let all this diagnostic stuff drop.

And to be honest, I probably would, too.

It’s all well and good to observe myself regularly for signs of things that need fixing, but sometimes a person just needs to get on with life.

Lookit — It’s Memorial Day weekend. The sun is out, the skies are blue, the trees and grass and all the living things are just exploding with life. Why spend all my free time sitting around contemplating my issues?

Why indeed?

Okay, so I get what Give Back Orlando is all about – watching yourself regularly to identify head injured moments and do something to address them. But I’ve been doing that for quite some time, and at some point, I just need to take a break. Read a book for fun. Play some cards. Watch a movie. Maybe even go for a walk. Just have fun. And so some writing that isn’t all about my deep dark issues.

There’s an idea…

A TBI toolkit for your doctor

Heads Up: Brain Injury in Your Practice – A Tool Kit for Physicians is an information packet about TBI developed specifically for doctors. If you or a loved one has sustained a TBI, you may wish to considering passing it along to your PCP.

From the site:

An estimated 75%-90% of the 1.4 million traumatic brain injury-related deaths, hospitalizations, and emergency department visits that occur each year are concussions or mild traumatic brain injuries (MTBI).

Many individuals who sustain an MTBI are not hospitalized or receive no medical care at all. An unknown proportion of those who are not hospitalized may experience long-term problems such as persistent headache, pain, fatigue, vision or hearing problems, memory problems, confusion, sleep disturbances, or mood changes. Symptoms of MTBI or concussion may appear mild, but can lead to significant, life-long impairment affecting an individual’s ability to function physically, cognitively, and psychologically.

Physicians can play a key role in helping to prevent MTBI or concussion and improve a patient’s health outcomes through early diagnosis, management, and appropriate referral.

In response, CDC, in collaboration with an expert work group, has recently updated and revised the “Heads Up: Brain Injury in Your Practice” tool kit. This tool kit is available free-of-charge and contains practical, easy-to-use clinical information and tools, including:

  • a booklet with information on diagnosis and management of MTBI;

  • a patient assessment tool (Acute Concussion Evaluation or ACE);

  • a care plan to help guide a patient’s recovery;

  • fact sheets in English and Spanish on preventing concussion;

  • a palm card for the on-field management of sports-related concussion; and

  • a CD-ROM with downloadable kit materials and additional MTBI resources.

How I found a great neuropsychologist – and you can, too

I consider myself extremely lucky. Not everyone has the good fortune that I do — finding an experienced, highly competent neuropsychologist who is not only patient and kind and knowledgeable and insightful and observant, but who is also geared towards rehabilitation and empowerment. And who is well-connected in the neurological and psychological world.

I have truly been protected and guided by some Divine Force, in finding this individual. They have helped me in countless ways, and I’d be lost without them.

I found this individual the old-fashioned way — by picking up the phone and talking to people. I was so turned around and confused and frightened and freaked-out, about a year and a half ago, when I realized (like Paul on the road to Damascus) that things were not right in my life, and they hadn’t been for a long, long time. All the stories I’d been telling myself about how I was perfectly fine and okay, and everyone else had the problem, not me… well, they all just fell apart. I had to get help. I had no idea where to turn. I was so flipped out and frustrated and embarrassed and ashamed of myself… here, I was the Big Cheese who supposedly had it all together, and the outside shell I’d built up around me had started to crack into little tiny pieces.

I swallowed my pride and emailed the Brain Injury Association near where I live. They gave me some good info via email and told me to call anytime.

Now, you have to understand, I have a hell of a time talking to people on the phone. I get confused and turned around, and I have a hard time understanding what’s being said to me. Now I’ve learned that the mechanism of my brain that turns sounds I hear into usable information is broken and not working correctly, so I understand why I’ve always had such a hard time grasping what people were saying to me. But 18 months ago, I didn’t know that yet — all I knew was that I friggin’ hated to talk on the phone, I couldn’t understand what people were saying to me, and it sent me into a panic at times.

But then a lightbulb went on in my head — it was perfectly okay for me to call the Brain Injury Association and sound/talk like a raving lunatic (if it came to that), because they were the Brain Injury Association and they specialized in dealing with people like me. Plus, even though I had a hugely difficult time handling stuff, I was reasonably sure that they’d dealt with people who were far worse off than me. Plus, it was their job to provide information to people who are brain-injured. That’s what they were trained to do.

So, I picked up the phone.

And I got honest. When one of the volunteers answered, I did the unthinkable and gave them my name and told them I needed help. How unlike me. Seriously. In the past, I would have muttered and mumbled and beat around the bush and then just hung up. I never would have said I needed help. I never would have given someone my name. No way, no how. But this time was different.

I told them my situation and asked if they could help me. And when they said they weren’t sure, I did the unthinkable again… and followed that up with a question: Do you know who can? In the past, I would have just said, “Well, thanks for your help… have a nice day,” and hung up. And then I would have wandered off in despair, gotten confused and depressed and withdrawn. But this time, I actually followed through.

The person on the other end of the line paused for a moment, and I just hung in there. I was so petrified… it’s hard to explain that level of terror over something as basic as a phone call. It’s embarrassing for me to admit, and I hate thinking about it. But the phone and I usually don’t get along very well. I think that also, being on the phone with a stranger who knew my name and knew I had sustained multiple brain injuries… being afraid that someone would realize who I was or tell someone about me, or someone nearby might overhear my conversation… being so unsure of myself about being on the phone, to begin with… not sure if I was saying the right thing or doing it right or being clear… feeling like I was making a mess of things — again… it was pretty tough.

After a pause, they suddenly thought of someone I could call who could help me. They gave me the name and number of a long-term brain injury survivor in another part of the state, who had lots of experience with tracking down the source of their issues, years after their injury. They recommended I call them, and wished me luck. I took down the name and number and thanked them, then called this person right away. I knew if I didn’t, I’d never do it, and I had to do something.

I called the number and managed to hang in there through the initial awkwardness of repeating my name and my own story. The person on the other end of the line was really, really helpful, and they were able to spend some time talking to me about what they’d been through. They told me about requesting copies of all doctors’ notes after visits, and making sure that I didn’t get stuck with someone who was clueless, and they told me about how they’d been through the wringer with a bunch of different neuropsychs who just didn’t have a clue. And they also gave me some contact information for a neuropsych they’d gone to see, who had helped them.

They said this doctor was in private practice and they were located some distance from me, but they were the best, and they were well worth the effort of getting to. I said I didn’t care about driving — I would willingly go way out of my way to get the right help.

After I got off the phone with this person, I called the doctor and left a message. I gave them my name and told them my situation, and I left my number. Then I let it go. It was the holiday season, and I had plenty of things to keep me busy.

I also called some other neuropsychs and told them my story. They were helpful to varying degrees — in part because once they heard what insurance I had, some of them just disqualified me outright. But others told me what I needed to do, in order to get around the insurance roadblocks, which was helpful.

After about a week or so, I got a call back from the recommended doc I’d left a message with. They said they would talk to me about my situation, and we spent close to an hour discussing the issues I have. I was starting to get a little desperate, because I was going through all of this on my own, nobody else really knew all the details of my situation (I hadn’t yet worked up the nerve to tell my immediate family members), and I was running out of energy and ideas. But by the end of our discussion, I actually felt like there was hope.

Long story short, I had a really good discussion with the doc, and they suggested some alternatives for my insurance situation. But it took me another eight months before I could navigate the medical and bureaucratic red tape to actually get to see them. It felt like it took forever… and in the meantime, I had a couple of really distressing encounters with (the wrong) neurologists, some deeply disconcerting exchanges with individuals who refused to accept I was having problems, a couple of f’ed up job changes (accompanied by the smell of burning bridges), and a whole lot of trying to get my bearings in life.

But now I’ve found a great neuropsych and have had a great working relationship with them. I’m not sure how much longer we’ll be working together, but if we met for a few hours every other week for the next ten years, I wouldn’t regret it.

If you’re looking for a good neuropsychologist — or really, any medical or “caring sector” professional — and you’ve sustained a TBI or some other issue that is not well-understood, you can cut back on the BS by doing the following:

  1. Talk to people who have the same condition as you, who were successful in finding help.
  2. Talk to your local Brain Injury Association folks to find out where to look for help.
  3. Make sure you get copies of all medical records, even if the doctors and their receptionists look at you funny.
  4. Take notes on what they tell you.
  5. Don’t be afraid to seek help elsewhere. Sometimes it just doesn’t work out with a provider, so keep going.
  6. Never, ever, ever give up!

And my ears are ringing

My tinnitus has been driving me nuts, lately.

I just needed to mention that, because it’s one of the most constant aspects of my life experience, and it’s one of the most neglected.

I went to see a neuro once, in hopes of sorting some of this stuff out, and when I asked them about the ringing in my ears, they shrugged their shoulders and said they didn’t know what it might be.

This makes me crazy!!!

Isn’t tinnitus one of the biggies that go along with TBI?

Isn’t TBI a neurological condition?

Aren’t neurologists specialists in neurological conditions?

Why the shrugging of shoulders? Because it’s not posing a danger to my life and limb, or because the neuro is/was clueless about it, or because they have no “cure” for it, so they’re not interested in learning more?

I don’t get it.

I constantly come across people talking about it. Okay, so it’s not life-threatening (that I can think of), and it’s more annoying than anything else, in some cases, but it’s such a part of my life, it seems disproportionately dismisssed.

Enough cursing the darkness. Here’s a candle:

Tinnitus Evaluation and Management Considerations for Persons with Mild Traumatic Brain Injury at http://www.asha.org/members/aud/TinnitusTBI

I haven’t read the whole thing yet, but it’s a start.

And here are Google search results on head injury/brain injury/tbi and tinnitus.

Happy reading, for those afflicted like me.

On being beyond help…

I guess I’m feeling sorry for myself today. It started this a.m., when I had a pretty intense discussion with my new shrink about what I was going to do with the information that came from my new neuro. After talking with totally outraged friends who were incensed that my present neuro didn’t tell me about the pineal cyst and were miffed about how my experiences were described in the letter to my PCP, I was seriously considering looking for a new neuro.

Until my shrink talked some sense into me.

Said they, “So, this is Neurologist Number … Three?

Said I, “Yes.”

Said they, “You can’t keep jumping from doctor to doctor…”

Said I, rather abashedly, “Uh… I know…”

We had a pretty frank discussion about how the medical profession is not having a particularly good century, thus far, and how doctors have so much pressure on them, these days, so there’s only so much I can expect from them. And there are plenty of people with much more pressing problems than mine — which are really borderline and are more exploratory than anything else, at this point. True, there are things that have been going on with me for some time, that I’ve been urged to follow up on, but it’s not like I’m in serious trouble and unable to function at all.

I’m high functioning in some ways. In others, I’m less so. It’s getting past the okay stuff to the problematic pieces that’s the major conundrum in my life.

Frankly, I’m not sure I’ll ever be able to get to the bottom of what needs fixing, so I can function as well as I can all across the board. Not really. I just can’t describe my symptoms and issues in ways that others can understand. At least, I haven’t been able to do it, yet. Maybe someday I’ll be able to, with the help of a speech therapist, but right now, I have no great hope of it. I’m just so awful at communicating what’s going on with me, when pressed for information. Just awful.

And it just pisses off the people who are trying to help me.

So, I’m beyond help.

I don’t mean to sound depressed or anything, even though I kind of am. I guess I just had higher hopes of being able to connect with medical folks, and not only failing at that, but also being told there’s no great hope of me being able to do it any better with anyone else, bums me out, too. I’m probably being a drag, right now, and I apologize for that. But for others out there who are dealing with TBI stuff, and for the sake of those who are trying to understand what people like me have to go through, I hope my words can help shed at least a little light on what problems TBI folks face in seeking health care.

I suspect this is going to be a pretty significant issue in the coming years, as our veterans return from Iraq and Afghanistan with head injuries and PTSD and lots of other issues that they need help with. What is this country going to do, when thousands of folks with communication and self-assessment problems like mine — and physical conditions that are far more severe — show up needing help? What are the doctors and nurses of this country going to do? Shrug their shoulders and say, “Oh, well…” and turn away? Or dismiss them as malingerers? Or, absent any clue about what the real problems are, pump them full of drugs that will either ease the symptoms or knock them out sufficiently to not notice them so much?

It makes my heart hurt, to think about it. It’s bad enough that I have to go through all this, when I’m relatively able-bodied and in possession of my faculties, a job, a house, a family, and a relatively stable life. But those who are far less fortunate, and who have paid an unimaginably high price for the sake of this nation… well, it just seems awful to me.

What seems even more awful is this attitude I keep coming across about how doctors have to work hard enough at their trade, without having to extend themselves for people like me. As though learning to communicate with me and figure out what’s up with me in ways that are accessible to me doesn’t matter one bit. As though any communication breakdown is totally on me. I am more than willing to do everything I can to communicate with my doctor(s), but I’ve been injured a bunch of times, and I’m a bit impaired, so I do need some help.

That’s why I seek out medical attention, to begin with. And that’s why I try like crazy to communicate in any way I can find… only to be rebuffed by docs who are irritated at my approach and don’t really have the time to get to know me well enough to tell if I’m really okay, or if I just think I am.

I really want to be positive. I really want to be hopeful. I really want to be generous and gracious and extend myself to my beleaguered doctor(s). But right now I’m too tired from being lectured about how hard doctors have it, and how I can’t expect too much from them, and how other people are much worse off than me, so I shouldn’t take up too much of their time, I’m too frustrated, too … well, everything… to see things in a rosy light.

The ironic thing is, I started out this whole quest from a place where I was totally DIY with regard to my health. I stepped into the fray, agreeing tacitly to call a truce with the establishment and give the medical field the benefit of the doubt, and keep an open mind, be compliant, try to be the best patient I can be. But now I’m being sent away again.

So, I’ll just keep looking. I’ll keep asking questions. I’ll keep recording my life. I’ll keep pressing for answers I need, even if I have to look outside the usual areas (and inside my own heart) for the answers I need. I’ll go back to doing things  the way I always have — on my own, because nobody else has the time or the energy or the willingness to help me in the places I’m the most vulnerable. And I can’t leave myself wide open to that level of dismissal and neglect.

Not anymore.

Normal MRI and EEG… or not?

One thing that has saved me from obsessing about my job situation is my neuropsychological fall-out from my TBIs. Not only did my partner finally (after more than six months) get to sit down with my neuropsych and start to ask questions from a qualified health care provider, but my copies of the MRI and EEG results/interpretations came from the hospital, and it appears that my tests were not 100% clear of all disruptions.

It’s been an exquisitely excruciating balance of good news and who-knows-what-kind-of news. And it has totally kept my mind off my job situation, which in my more vulnerable and fatigued moments just drives me ’round the bend. As much as I want to focus on my strengths and keep firm and steady, I still have a tremendous amount of insecurity around how my TBIs have affected me, work-wise, and I have deep-seated reservations about how well I’ll be able to perform, if I’ll be able to keep up, if I’ll be able to be the kind of team player I was before my fall down the stairs in 2004.

But things are moving along with regard to the neuropsychological exam, and good things are brewing there. That promise of improved coping abilities and good information made available in a way I/we can use it… as well as finding out I have a small pineal cyst, and learning that there was some rare theta slowing in one of my temporal lobes, have pretty much eclipsed my vocational concerns.

On an up note, my partner and I had a great session with my neuropsychologist last week. From the mouth of a professional, descriptions of my situation and my “challenges” sound a whole lot less scary, and my neuropsych had straightforward answers and suggestions, where I generally get turned around and agitated and even sometimes a bit combative when pressed for information. My partner got to ask the questions that have been burning in their mind for months and months, and they got total access to the doctor sitting across the desk from them. They got to see that my folder about my testing is 4-5 inches thick, and there are tons of tests I took, all of which rendered pertinent results. They got a real sense for how complex my situation is, and how good my doc is — how they really take their time and make sure they’re thorough and cover all the bases, which is a good thing.

I think it was a total relief for my partner, who was starting to think — I believe — that my neuropsych was lolly-gagging and taking their sweet old time. One other thing that was very beneficial was that the doctor had to take a call and talk someone through the steps of tracking down a loved one who was impaired, and keeping them from being a danger to themself. I’ve had appointments canceled and rescheduled with this doc numerous times, due to things like this, and my partner was thinking I was just being brushed off. When the phone call came in, they got to see the doctor in action and just having that experience really did a lot for their confidence in them.

I think my partner and I both have more good info to work with now, in regards to our marriage, and they can see that the problems I’m having are not necessarily due to my being deliberately stubborn and trying to yank their chain and ignore them. Yes, I can be difficult, but I’m a lot less deliberately problematic than my partner believes. I’ve been catching crap for years about being too inattentive, too oblivious, too lax, too lazy, too unmotivated, too absent-minded, too flighty… and now, at long last, I’m somewhat vindicated. They were told explicitly by the doc that I have trouble understanding spoken language in the moment, and it takes me longer to process information when someone is talking to me. All those times that I’ve gotten raked over the coals for not being responsive enough quickly enough can now be put behind us. We don’t have to do that anymore. And we can slow down. Something about having a doctor communicate the information I’ve been trying to convey over the past year is helping. I’m not going to question that. I’ll take it — it’s a gift.

On the other hand, my other doctor — the neurologist I saw in January and February — seems to have mucked things up a bit. I got a copy of the MRI and EEG analyses, and while they may read as “normal”, they are not without event. My MRI shows a small pineal cyst, and my EEG shows some theta slowing in one of my temporal lobes. In both cases, the anomalies are not great enough to warrant all-out alarm, but they are both something to keep an eye on.

In addition, the neuro wrote up notes from my visit and sent them to my PCP, and their description is not 100% accurate. They focused a great deal on the “rage” issues I’ve been having. I wouldn’t necessarily call them “rage” — just abrupt swings in emotion, in all directions. And they also mis-characterized my family history, making one of my relatives (who has had a lifetime of symptoms and experiences similar to my own, in some respects) look and sound like a rage-a-holic.

Oh        my        God…

Now I have to back-pedal and compose a letter to both my neuro and my PCP correcting the record. It sorta kinda freaks me out a bit. I’ve had so many unproductive relationships with doctors, I can’t even begin to say. Now, I finally managed to find someone I can work with and with whom I have established a decent rapport… only to have this neuro mis-characterize me and potentially undermine that relationship.  It’s bad enough that the neuro misunderstood me and is working off bad information. But now they’ve dragged my PCP into it, too. Ack.

So, my next steps are to communicate my situation in writing. I am going to:

  1. Work through this with my new therapist, who is a neuropsychologist themself, and who knows about TBI and can help me think through my response. I need to correct the record very thoroughly in writing and compose a letter to that effect.
  2. Send the letter to this neuro and my PCP.
  3. Follow up with my PCP about what to do with all this new information. I may need to do damage control. I want to keep the lines of communication open with them and make sure I’m not digging myself yet another hole.
  4. Probably find a new neuro. I really liked dealing with this one, for once, but they clearly were not present and were not dealing with what was in front of them. I’m not sure where they were, at the time we were talking… But no matter. They are so fired, and I’m off to find another neuro.
  5. Check in with my new therapist a lot through the whole process, to make sure I’m not making things worse for myself. That would be all too easy to do, and I want to do things different this time.

What this experience has really taught me — and there are some vital, valuable lessons here — is that I really need to approach my health care with my TBIs in mind. The biggest problems I’ve been having with health care, throughout my life, have revolved around communication. I have never had an easy time of describing my symptoms to doctors, nor have I done a very good job at collecting and analyzing information from them. I can see now that I’ve had a truly terrible time understanding what doctors are saying to me, parsing through it all, and then retaining it to act on it later.

And because I’ve had such a terrible time — all the while looking (to the untrained eye) like I should be more “with it,” so what the hell was I being such a freaking space-case about?and I’ve got a history of various trauma with plenty of PTSD to go along with it, I would get all revved and anxious and become either overly withdrawn or combative in this exaggerated fight-or-flight dynamic that probably every TBI/PTSD person knows all too intimately. And I would either come across as hostile and aggressive, or I would retreat into my shell and not speak up about what was going on with me.

Which never made for very good doctor-patient relations, I can tell you.

Now I need to take a different approach. Put the facts of my situation into writing. Take it slowly and deliberately and seek out help. Because at least that’s a way I can communicate with my doctors with 100% accuracy. And the next time I deal with any doctor, I’m going to summarize in writing my issues and give them to them — along with a note from my neuropsychologist that explains that no matter how bright I may look on the outside, no matter how extensive my vocabulary may be, no matter how conceptually “with it” I may be, my speed of processing is slower than one would expect, my ability to process spoken language in the moment is impaired, and my short-term memory is for shit. And I don’t mean to come across as hostile and argumentative — I just have a hard time dealing with my “asymmetrical” challenges.

The next thing I do  — after I correct the neuro’s info and send it to them and my PCP — is get a brief summary letter from my neuropsych explaining both the strengths I have and the limitations. I cannot see any more doctors until I have that in hand and I can give it to them in advance, so they can understand I am not malingering, I am not deliberately being difficult, I am not trying to make their lives more complicated, I’m not a malpractice risk, I just need help when it comes to communicating, and I’d appreciate it if they wouldn’t jump to conclusions about me, just ’cause I fell down and got hit on the head a lot over the course of my eventful life.

I am so done with dealing with doctors who don’t have all the information and can’t use their heads to observe what’s right in front of them. Maybe that’s not how medical professionals do things, but God gave them two eyes,  two ears, a nose, and a mouth, and it seems to have worked well for millennia, so why not avail oneself of one’s native abilities?

I’m also fed up with not being able to “read” what they are trying to communicate, and being held back by my broken brain’s penchant for meaningless detail. I’m tired of struggling with something I “shouldn’t” have problems with, getting lost… and not realizing I’m lost till several hours after I leave the doctor’s office.

I’m sick and tired of this whole hidden disability trip, all the ignorance, all the half-assed information, all the bias, all the cluelessness… and how the lowest common denominators seem to drive the situation. I’m tired of having to navigate the seas of truly debilitating difficulties, without anyone else realizing they’re a problem for me — and giving me shit because they are.

I am also fed up with doctors who don’t take time with me. I need to figure something out. I had considered double-booking appointments with my doctor — reserving twice as much time with them, so I don’t feel as rushed and I can ask all the questions I need to ask at a speed I can actually sustain. Either that, or I’ll get an “interpreter” to go with me and help me understand what the doctor is saying to me — and who can help me get them to slow down and stop rushing me. I think that having another person in the room with me to help me sort things out may be the way to go.

Honestly, does my health need to suffer, just ’cause someone doesn’t want to slow down? The rest of the world may think so, but I don’t. I’m just not going there. Something’s broken. And I’ve got to fix it.