That should have been the first red flag. Nothing good can come of a diagnosis “aid” that takes 60 seconds to read.
Lo and behold, here are the top 10 symptoms created by your mind when the brain “attempt[s] to throw a person’s consciousness off guard by inducing physical changes in the body, in order to prevent the person from consciously experiencing difficult emotions, such as rage, sadness, and emotional distress.”
Oy. Here we go… all the ways that we’re not actually suffering from a real illness. The following may be all in your head:
Chronic Pain Syndrome – not real pain… you just don’t want to deal with your emotions
Fibromyalgia – odd… I thought it was settled, that it’s a real thing.
Carpal Tunnel Syndrome – because repetitive stress injuries… nah, not really a thing.
Gastrointestinal syndromes – maybe you should just try to relax
Migraine headaches – apparently, the top-trending medical issue on Twitter is a chimera
Frequent need for urination – because yer innards would never shift south and put pressure on your bladder, now would they?
Tinnitus and Vertigo – okay… clearly the person writing this has never dealt with this crap on a daily basis… for years. I invite them to walk a mile in my shoes.
Allergic phenomena – ’cause, like, our world is completely hypoallergenic. Not.
For the past several weeks — on and off — I’ve been pulling together descriptions of what my symptoms are, Headaches, dizziness, nausea, feeling drugged and “doped up”, tremors and twitching in my face and hands… I usually don’t think about these things. I just get on with my life and don’t let them stop me. Now that I’m putting them all down on paper to discuss with the new neuro, as well as review with my neuropsych.
You know, it’s funny… all this time, I’ve been really actively involved in my own recovery from TBI, and my neuropsych has had a very big positive influence on me, but not in ways that they probably intended. I think they’ve been thinking they’re helping me develop better skills and approaches — and they have.
But the real way they’ve helped, has been just being there reliably for me each week, to turn to and discuss matters of importance to me. Just being able to talk about my life to another person who can get it, is hugely helpful.
The only thing is, now I’m going down this path of digging into all these symptoms and complaints, and it feels very foreign to me. I spend so much of my time looking past the problems, disregarding the issues, coming up with ways to not have to deal with them explicitly – just work around them or do a variety of things to relieve them – that now I’m feeling the burn pretty intensely.
All the things I don’t talk about with others — because A) they can’t believe that it’s true, and B) they get all freaked out that I feel the way I do — is getting put down on paper. And it’s a trip.
God, I have a headache. And I’m sick to my stomach. Migraine? Who knows? And who cares?
There’s no sense in getting all depressed and upset about it. I can’t always do anything about the headaches — they don’t always respond to Advil, and the rest of the supposed “headache medicines” are like sugar pills to me. I’m much better off, just finding something I can focus my full attention on, and sticking with that.
Like my writing projects. Like the books I’m writing. Like the variety of things I have to occupy my attention. Fun things. A heck of a lot more fun than thinking about my headaches.
Anyway, life goes on, regardless. Or it doesn’t. Who knows how long any of us has, and why not make the most of it, while we can? I have my ways of dealing with headache that may even be more effective than medication. If you can’t feel the pain, you don’t have pain. So, if I can keep my focus on something that really captures my imagination and lifts my spirits, why not do that… instead of fretting about the headaches that never go away?
So long as it’s not something that’s life-threatening, why let it wreck my days? There is so much to do, so much to see, so much to experience… why let headaches stop me, when I know how to stop them?
The holiday season is upon us. All the pressure to BUY-BUY-BUY and run around doing what everyone else is doing, is at an all-time high.
I feel unusually immune to it, this year. Nothing much has changed outside of me — the commercials on t.v. are all the same, the urgency is the same as in other years, and everyone is as busy as ever for this time of year. The world is the same as it ever was, things are just as messed up, we’re getting just as much news about how sh*tty the world is, along with a lot of pleas for financial help (that — just to be clear — is tax-deductible), and pressure to use the last weeks of the year to make up for the last 11-1/2 months of general negligence.
But while everyone else is running around like a chicken with their head cut off, I’m not. I feel pretty calm, actually, and I’m not running around to all the latest sales, spending hours online looking for presents, and going from party to party.
Even if I wanted to, I can’t run around and buy-buy-buy. I don’t have the money, which is kind of a relief. I’ve got to improvise. Come up with other ideas. And I will. I received a book in the mail that looks like something my mother would enjoy. And I’ve got some other ideas for things I can get for other family members for very low cost. I’m not worrying about it. I know how to handle things. And I am. Just handling them.
I also think it has a lot to do with the everyday pressure being off me, thanks to my short commute. I now have the time to get up in the morning and do what I please for an hour or so, before I start doing what the rest of the world wants me to do. I can move about, run errands at lunchtime, come and go as I please, and still get all my hours in at work. I can live my life without having to plan and think through everything I do in detail. And since I’m not a permanent, full-time employee, I don’t have to be existentially affected by changes at work and what they mean for my future.
I can just get on with my daily life and not worry about things like that. I’ll be updating my resume over the next few days, just to log the different thing I’ve accomplished at work, and make sure my resume is current and in good shape. And I’ll be taking time to just relax and enjoy myself.
Having a long commute, along with a demanding job, is a killer for me. I realize that now. I’ve had to work so hard for so long, to get where I am, but now I’m finally at a place where I’m comfortable with myself, professionally and personally. I realize that I’ve been in a good place for some time, now, but for the past number of years, I’ve been really on edge and nervous about where I am and how I’m doing.
Part of that nervousness was due to all the debt I was carrying and the pressures of just paying bills on time. I wiped out my debt over the past four years, so that pressure is off.
Another problem was that I was in a line of work that pays really well, but is inherently tension-producing, high-pressure, and precarious. Just the nature of the work — which is all about keeping current with the latest technology developments — was personally and professionally pressurizing. I got out of that side of the industry, turned my focus to people management, and now I’m in much better shape, overall.
And of course there’s the commute. I keep mentioning it, but it was such a huge factor in my life, I can’t even begin to say. Other people just take it for granted — and in fact so did I, for the last 25 years. But now that I don’t have to travel 45 minutes to an hour (or two) each way, every day, my life has literally turned around. I can rest. And even when I don’t get a full night’s sleep, it doesn’t wreck me like it used to. Long commutes used to seriously mess with my head.
No more. No more to all of the above.
The wild thing is, so much of what was making me miserable, I just took for granted. I figured that was how things were supposed to be. That’s what I knew, and that’s how I figured things were supposed to be. It wasn’t until I was pushed to my utmost limit, that I changed things up. Lots of suffering, lots of years of pain. Lots of change — needed change.
Ultimately, I’ve come out on the other end feeling strong and clear. It’s just such a huge difference. Even when my head is fuzzy and foggy, like today, my ears are ringing, my body is wracked with pain, I’m off balance, my thoughts are jumping all over the place like little jumping beans, and every little sound and light hurts me, I still feel strong and clear. And I know I can adapt and deal with the things that are getting in my way.
I’ve got a lot to do this weekend, but before I do, I’m stopping — just stopping — to take a breath, to get myself in a good frame of mind, and get clear on what needs to happen, before I charge forward into the fray. I’ve got my list — I wrote it out last night, while I was waiting for supper to warm up — and I’ll organize it for the best and most sensible direction to take, so I don’t waste time, and I can really focus on what I’m doing.
The Thanksgiving holiday was good. Traffic was insane, as just about anyone who drove during the past week can tell you. I traveled close to 2,000 miles, going from state to state to see extended family, and it was good. A lot of driving… and now I’m pretty sore from all the sitting… but it was good to break out of my routine for once.
I was really “off” my routine — I did almost nothing similar to what I normally do. I felt a little bit like the guy who jumped out of his space capsule a few years back, and fell 23 miles to earth. Like him, I had my reservations.
I ate different foods, I did different things, I had a different schedule, and I slept different hours. I didn’t sleep nearly enough, that’s for sure, but I managed. I got pretty sleepy when I was driving a few times, but I did things to wake myself up, and I took breaks when I needed to. Got out in the cold air, stretched, did jumping jacks, swung my arms around and sprinted a little bit. Whatever it takes to get there safely.
And like Felix Baumgartner, I came through okay.
I’ve been feeling pretty depressed, over the past month or so. I had a death in my family that has shifted the family dynamics. The person who died had a very complicated relationship with just about everyone — in some ways they were very loved, in other ways they were very feared. They were a challenge to deal with, although they had many, many fine qualities that we loved.
Their passing was actually a blessing for some folks in our family, and now they can rest and take a break and get on with their lives. For others, it was a deep loss, and now they don’t know what to do.
I didn’t expect this death to affect me as much as it has, but it’s changed my status in the family — it’s made me more “senior” in the generations, and my parents are now leaning on me, more than ever. Death brings that out in some people — we all become more aware of our mortality, and my folks are certainly more aware now.
So, there’s been more demands on me and my time and attention, and I believe that’s what was pulling me down. Just the demands. Being so tired. Having people relying on me, and feeling a little overwhelmed by everything. I know I can handle it. I just get very tired, and even when I’m doing well, I feel beaten down and low, when my energy is tapped out… which it was.
The other thing that’s been bothering me, is the sense that I haven’t accomplished the things I’ve intended to accomplish in life. I’m not talking about being a millionaire or being a powerful player on the world stage. I’m just talking about simple things like New Year’s resolutions and other projects I’ve started and could not finish. There are a lot of little things I have started and have not completed, and it was really pulling me down — especially since I’m that much more aware of death and how close it is.
It’s been pretty tough… but then again, it hasn’t. The tough part is not having the energy I usually do — feeling so blah and bland, like nothing really matters and there’s no point to anything. I haven’t had that steady “pump” of exuberance I usually do. And people have noticed it — tried to cheer me up, tried to get me all perky and what-not again.
I’ve noticed that people around me really do rely on me being positive and pro-active, and when I’m not that way, they get a little irked. Like I’m raining on their parade. Sorry, folks, I’m just not feeling it.
And I’ve noticed that I’m sort of the same way — I need that burst of positive energy, a certain perkiness, an “up” sense of myself, in order to get through the day.
But is that actually realistic? We can’t always been “up” and perky and feeling fit as a fiddle. Sometimes we’re tired and depressed and troubled by things that really should trouble us. It’s a little mentally ill to NOT be troubled by so much that’s going on in the world.
The thing is, I can’t let the down times derail my life. And what I’ve been working on, over the past couple of weeks, has been functioning very well without a sense of being “up” or pumped or pro-actively positive. Life goes on, even when I’m not emotionally euphoric. I can’t let my moods stop me from living my life. And in fact, when I get myself going, despite feeling down and depressed and defeated, before long, I feel that much better.
My moods follow my activity, as often as not. They shouldn’t set the stage and make or break me. I should be able to choose what I do and think and accomplish, each and every day, regardless of my emotional state.
That’s my goal, anyway.
And somehow, it’s strangely freeing. I’m off the emotional roller coaster, and I’m going about my business as I see fit. I’m not held back by feeling down and confused and depressed. I’m keeping on. Even if it doesn’t feel so fantastic, that actually doesn’t need to matter. If anything, it makes me feel better to be able to continue on in living my life, even if I’m feeling down.
As a TBI survivor, my moods come and go very abruptly. In one day, I can feel a thousand different ways, and each one would be true. My mood swings can be very extreme, as well. I can be euphoric one minute, and in the emotional basement the next. There’s not a lot of rhyme and reason to it — although being tired plays a big part in it. Things just come up, and I need to deal with them. I need to deal with my life in a constructive way, even if my emotions are running wild, and/or the rest of my system is a bit whacked.
That’s where I am, right now. I’m still really tired from the driving, I’m still overwhelmed from the family visits, my world is still evolving after the death, and my whole system is a bit “on the fritz”. I’m having trouble typing and putting words together, the ringing in my ears is pretty intense, and my main issues — fatigue, tinnitis, sensitivity to light and noise and touch, insomnia, general pain, headache, attention issues, emotional lability, panic/anxiety, anger spikes, raging behavior, confusion, difficulty understanding, trouble hearing, slowed processing speed, limited short-term working memory, balance, vertigo, difficulty reading and learning new things, nystagmus, and tremors — are being a real pain in my ass.
I don’t quite feel like I’m “here” yet. That will come, in the next days of getting rest, getting back to my routine, and eating the right foods. It will all come.
When in doubt, Stone Temple Pilots are good company to keep. I’m listening to No. 4, and it’s as good as ever. I went through a period, over the past few years, when I didn’t listen to much rock music. It was a lot of electronic stuff — trace and whatnot. Always good for getting me flying down the road, to and from work.
Lately, though, I’ve been getting back to my good old rock ‘n’ roll. Lots of hard rock, as I drive to and from work. And it feels normal again. Like I’m picking up where I left off, a few years back.
It’s like I went on a detour for a few years. Thinking I was going to be or do something different. I blame that last job I had, where I was so out of place, and I just didn’t fit in at all, and I needed to take the edge off things.
The whole last ten years feels like a big-ass detour for me. It was that damn’ mild TBI in 2004 that screwed me up. I’m still pissed off about it, and how it derailed me. I’ve been swimming upstream, trying like crazy to get where I’m going, fighting a current I couldn’t see — a downwelling, as they call it in the ocean – watch a video about surviving downwelling here.
In a downwelling, when you’re scuba diving, an invisible current hits you and carries you down-down-down into the depths — potentially past your approved depth. It can take you down very quickly — fast enough to increase the nitrogen in your blood enough to make you feel — and act — drunk. And also pressurizing you very quickly. It’s crazy. If you get caught in a downwelling and can’t get out, you’re done for.
That’s kind of like what chronic mild TBI / concussion is like. Most people see their issues resolve in weeks or months, but some of us are stuck with them, and they can catch us unawares and plunge us into the depths — towards the abyss — before we even know what’s happening. It can be deadly. And if you choose wrong, you can get totally screwed up.
I didn’t realize until late 2007, that there was really a problem — three years past my injury. Everything went downhill, and I didn’t even realize it. Money was disappearing so fast, I might as well have set piles of it on fire. I jumped from job to job, not realizing how it would affect my future job prospects. I could not read, I could not learn, and I felt like I was literally disappearing from my life. I could not go outside very much, because of my light and noise sensitivities, and I had cataclysmic panic attacks that felt like seizures.
I was in the grip of a “life downwelling”, and I didn’t know which direction to swim to escape.
A number of things happened to help me along the way
I realized that something was wrong
I realized I needed to do something about it
I hunted high and low to find information and people who could help me understand what was happening
Almost by chance, I connected with an excellent neuropsychologist who was able to help me soldier through
I just kept going, no matter what
I’m now at a place in my life where I’m back on track. My mountains of debt are gone, my job situation is stable, and I’m able to read again.
And yet, I feel like a stranger to myself.
Technically, I supposed no one really knows themself inside and out. We all delude ourselves to some extent. But with TBI, it feels to me like there are a ton of gaps that I just can’t fill. I don’t even know where to start. It’s like my life is a big hunk of swiss cheese with a lot of holes in it, and I don’t even know the holes are there, till it’s too late. I’m in trouble again.
Anyway, STP helps me get my mind off that. They help me just keep going, even when I’m not feeling up to it. Keeps me swimming — out of the downward spiraling current and up towards safety again. A good dose of heavy guitar and rock lyrics gets me back on track in useful ways.
Gradually, I’m coming back to where I want to be. It takes time. And I need company, along the way. STP is good company. Thanks, guys.
Music is the best company I can think to keep. It’s there when I need it, and I can always turn it off, when I’m done for the day.
Speaking of the day, I’ve got to get on with it. I’ve got a handful of things I need to do today, including resting up. It’s been a long, long week, and I need a break, for sure. I’ll get that break later today after my chores are done, and I can comfortably settle into my bed, pull the covers over my head, and just check out.
Looking forward to it.
But in the meantime, there’s always hard and heavy rock music.
I had a revelation this morning, as I was waking up. In the space of a few seconds, it turned an imagined failure into a chance for long-term success.
It was the realization that when I started to lose my temper with my spouse last night, it wasn’t a sign that I was failing at my attempts to be more level-headed and calm, no matter what the situation. It was a clear sign that I was tired, and that my brain needed sleep.
I have been working on being more level-headed — no matter what the situation. This is a lifelong pursuit, actually. I saw the need for it, when I was a teenager and a young adult… as an adult in the working world… and it continues to be important to me. It’s not that I want everything to be perfect for me all the time and give me no trouble. What I want, is to be able to handle my circumstances, be okay with them (within reason), and make the best of any situation’s opportunities, no matter now “bad” it may look at the time.
I have had some good success with this approach over the years. After all, I have seen the ill-effects NOT having a level head in challenging circumstances, and the results are rarely pretty. I have had plenty of opportunity to witness this in the people around me — in my family, especially, when my parents could not hold it together with one of my “problematic” (that is — drug-addicted, alcoholic, sleeping-with-anything-that-moved, drug-dealing) siblings. It was bad enough that my sibling had all those problems (which were signs of something far deeper going on with them). But my parents could not maintain their composure or clarity of thought when it came to my sibling, so that made a bad situation even worse.
I’m not judging my parents — they were not equipped to handle it, and we lived in an area where any problem with kids was a reflection on the parents, so they went from being respected members of society to being “those people” who everybody handled very gingerly.
Anyway, I’ve seen many examples in my own life, where keeping a level head and a calm demeanor helped me through tough times. I actually credit my many TBIs (I’ve had 9+) with helping me with this, because they slowed down my processing speed. When your processing speed is slowed down, it makes it pretty difficult to get on the same wavelength with everybody else… and in case you haven’t noticed, being on the same wavelength as everybody else leaves a lot to be desired.
Everybody gets so worked up over things. But when you’re not thinking as quickly as everyone else, you can’t jump to the same conclusions and get to those snap judgments that can send you careening into HOLY SH*T WHAT THE F*CKland. Everybody else is freaking out — oftentimes about something that isn’t worth freaking out about — and you’re still trying to figure out what just happened…
So, if you think about it, slower processing speed isn’t always a bad thing. And equanimity… peace of mind… level-headedness in the face of a crisis is a definite advantage. Especially when everybody else’s “normal-fast” thinking is vectoring off in a really unproductive direction.
Anyway, that’s one half of the story. The other half of it is less cheery — that’s the aspect of my thinking that is WAY more reactive than others’. It’s the instant-freak-out part of my experience that has made me nuts for years. At an instant’s notice, I’ll suddenly FREAK OUT over something. It can be a dropped spoon, or a missed channel that I’m trying to change with the clicker, or something my spouse says or does that rubs me the wrong way.
When things go haywire in my head, they go reallyhaywire. There’s no middle ground. Everything goes nuts. I know I’m being unreasonable, I know I’m being crazy, I know there is no logical reason for me to be freaking out, but it’s happening anyway. And it’s never good for anyone. I’ve lost more relationships than I can say, because of this. That includes a really good job I lost in 2005 after my TBI in 2004.
People are afraid of me, when I start to get agitated and aggressive — which may have to do with me, or may have to do with them. I don’t want to give anyone any reason to be afraid of me. It’s counter-productive. And it hurts everyone involved.
So, there’s all the more reason to keep tabs on myself and foster a calm demeanor, a cool head, and a self-possessed state of mind. And with that goal in mind, I have pursued a number of different practices and philosophies that might help me with that. I have worked on practices that emphasize acceptance, calmness, not reacting to things around me, and philosophies that teach about how transitory life is, and how important it is for us to understand what we can and cannot change, and not make ourselves nuts trying to alter things that can’t be changed.
Like the serenity prayer:
God, grant me the Serenity to accept the things I cannot change, Courage to change the things I can, and Wisdom to know the difference.
This has been a very powerful concept in my life, and I have it displayed in my kitchen where I will see it each morning when I get up and make my coffee.
Along the way, I have had many surges in interest in deepening this practice — in really getting to a place where I can make peace with the things I cannot change, and make the most of the opportunities that are hidden there. I’m a big believer that some of our worst hurdles and challenges offer us the greatest rewards — and when we resist those challenges, we miss out on the chance to become bigger and better than ever before.
Some things I can accept and work with — political changes, cultural changes, relocations from one area to the next, and small-scale changes at work. Other changes I have a harder time with — job changes, especially. The ones that make me the craziest are the ones I feel like I cannot understand or control — or that go off in a direction that is completely different from the direction I see myself headed.
Other things I cannot seem to accept, are the foolishness of others — the stinkin’ thinkin’ that my spouse indulges in, their constant anxiety, their devotion to drama, their bad habit of telling everyone exactly what they want to hear instead of the constructive truth. I have trouble with the attitudes of people at work, who can be cliquish and juvenile. I have trouble with the judgment of Management at work, when their decisions seem counter-productive and get in the way of us doing our work. My siblings also depress the sh*t out of me, with their choices and their prejudices and their holier-than-thou attitude. My parents are a little easier to deal with, because they are many hours away, and I don’t see them that often.
It’s the people who are closest to me, who I have the greatest investment in, that get me with their unhealthy habits of thought and action, their outlooks, their attitudes, and their behavior that seems to serve no useful purpose, other than to make them feel good about themselves — at the expense of everyone else.
The thing is, their behaviors and beliefs and actions have almost nothing to do with me. Even my spouse’s bad habits have more to do with them, than with me — no matter how much they may blame me for their anxiety. I am making myself unhappy over things that are far beyond my control, and it’s not helping me at all.
So, there is all the more incentive for me to calm myself down, not react to what they are doing, and step back and look at them and everything from a distance.
I have found some philosophies and outlooks that can help me do that, and I have pursued them eagerly, on and off, over the years. The thing is, I get to a certain point, then everything falls apart. My equanimity dissolves. I melt down, inside my head and heart. My temper explodes. And I end up feeling worse off than when I started. I feel like I’m back to Square 1, without having made any progress at all.
But in fact, I have made progress. My meltdowns and explosions do not mean that I have utterly failed at learning a new way of thinking and being and relating to others. They do mean that my brain has been working hard, so it is tired. And I need to rest it.
Because changing yourself and your brain and your patterns of thought and action and attitude is hard work. It doesn’t happen overnight. And the fact that I am getting frayed and losing it, actually means that I am making progress — I just need to take a break, rest up, learn what I can about what sets me off, and resume learning again, once I am rested.
This realization is just what I’ve been needing — for a long, long time. Getting frayed at 10 p.m. over someone being a pain in my ass is NOT a sign that I’m failing. It’s a sign that I’ve been working hard all day at changing my mind and my brain, and that it’s time to rest. It’s not a condemnation — it’s a diagnostic tool. And far from being an indication of my inferiority, it’s evidence that I’m actually making progress.
The simple fact is, I’m a brain-injured human being. If you think about it, there are a lot of people who are injured in one way or another, and we are all working our way through the maze called life, trying to find a better way to live. And because of my injuries, because of my history of experiences, my individual makeup, and all the different things that have made me what I am today, I have certain limitations I need to be mindful of and accommodate, so I can work around them and not let them get to me.
Fatigue and the irritability that comes from being tired are a couple of those limitations. So is:
a sharp tongue — over little things
a hot temper — at an instant’s notice
slower processing speed than one would expect
the almost constant pain that I’ve become resigned to living with, the rest of my born days
perpetual, never-ending tinnitus
And so on.
It’s not that my life is awful. It’s pretty sweet, to tell the truth. I just need to be aware of these issues, not forget them — or when I do forget them, find a way to remember that the things I’m doing and saying are about my brain injury, NOT about my character.
So, there is hope. There always is, so long as I don’t give up.
And speaking of not giving up, I’m going to get ready for work and get into my day, knowing that I didn’t fail last night, when I got cross with my spouse. I was just tired, and no animals were hurt in the filming of that movie.
I have come to recognise and realise, we people with TBIs need to embolden a special type of shell-fish (to otherwise be read as selfish.) The “shell” to house us from what would otherwise be attacks, accusations and allegations over being or feeling “bad” or that we may seem self-centered, any of our actions taken had very real and perceptive reasons and consequences.
Only when we debride a wound, or reach deep within residual scar tissue, are we allowed to uncover (very necessary to the healing process) healthy tissues.
A thorough study of the self amid the healing process, is a study in contradictions. The study of the self in TBI is, filled with cyclical change, growth, angst, beginnings. It is as though we are of two or more persons; walking through the situations in real time, taking the time to study, perhaps rehearse and may even attempt to resolve the consequences of earlier decisions.
Are these not the habits of people without TBI? Of course.
Therefore, the “shell” of being shellfish in TBI, may need to be a little more hearty and courageous, mayhaps even a little outrageous, to understand the absolute truth of these matters.
It’s very true. Like a hermit crab, we need to find shell-ter where we can, develop our defenses like a protective shell, and learn to carry it with us, as we go through life. No one else can know 100% what we are going through, so we need to develop our own defenses, our own sense of self, our own techniques and tricks to get us by.
I was just thinking about this yesterday — how I can basically make it through most situations in life without alerting everyone to the fact that I am struggling so terribly at times. My memory fails me.
The noise is too loud, the lights are too bright, and I have deafening ringing in my ears.
I am in pain.
I am off balance, struggling with vertigo, feeling like I’m going to lose my mind with having to keep upright.
Or I am boiling on the inside and fighting back my intense desire to either run screaming from the building or punch someone in the face.
Or I am dying inside, feeling like I am just not keeping up, and I have no idea what is going on in the conversation I’m participating in, even though it really matters a lot that I keep up.
I can get through those situations intact, because I have a shell of collected tactics I have built up over the years. Some of them I’ve been using a long time, while others are fairly recent.
But whatever their source or “vintage”, they work.
They keep me safe. They are not me, and they are not something I want to have, but I lost my “real shell” a long, long time ago, so I make do as best I can. And it works.
That’s the main thing. My internal state changes frequently, often without making any sense to me. It’s usually connected to my physical well-being — when I get tired, everything gets harder, and I am tired a lot of the time. So, I have to have a way to offset that effect, so my life can continue.
It’s not easy. It’s pretty painful at times. And it takes a lot out of me. But it works.
And that’s what really matters.
It’s bad enough that I have these issues. But having them screw up my life at the same time? That’s no good — not if I can at all avoid or prevent it.
Winter storms have really knocked the hell out of many parts of this country, this year, and as I watch the news and hear about regions with thousands of people stuck on highways, and snow coming down, down, down, there’s a part of me that’s a little grateful for the experience.
NOT the bad experiences, where people are killed or maimed or otherwise injured, but the experiences where everyone gets to find out what their/our limits are, and we all have to slow the heck down.
That part I really enjoy — the forced patience, the not-going-anywhere-fast conditions, the curtailed mobility… for once, I am not the only one who is forced to improvise, to get through the day. I don’t revel in the discomfort of others (well, maybe a little bit). It’s just that for once, I’m not the only one in the room who has to think through and re-think every danged thing I do.
You know, it’s funny — I’m so functional on a daily basis, and I do such a thorough job of covering up my issues around people who have no clue (who are the people I can’t afford to show/tell, because they don’t deal well with any sort of differences of ability)… I often end up tricking myself into “buying my cover”. I tend to be so focused on what is in front of me, blocking out any distractions around me, that I don’t even notice the things that would make other people absolutely insane in a relatively short period of time.
Seriously, I can be incredibly focused. My former boss actually mentioned this on my last performance review — that I blocked out distractions and got a shit-ton of work done (they didn’t say “shit-ton”, but it was implied, and it was quite true). But that focus also keeps me from noticing the busted-up things that need to get fixed: my injured neck and shoulder that refuse to heal up, the headaches I develop anytime my heart rate goes above 120 (I’ve been tracking it for the past couple of weeks at the suggestion of my neuropsych).
And then there are the things that never seem to go away. The vertigo and nausea that seem to follow me everywhere, the constant ringing in my ears, the chronic aches and pains that never exactly go away, just move around to different places. Fatigue, sensitivity to light and noise and touch, insomnia, attention issues, emotional lability, panic/anxiety, anger spikes, raging behavior, confusion, difficulty understanding, trouble hearing, slowed processing speed, limited short-term working memory, balance, vertigo issues, difficulty reading and learning new things, nystagmus, tremors. And so on…
If I paid attention to them all, I’d never get anything done.
I’m so focused, I don’t even notice when I get hurt. Like the big-ass bruise that showed up on the back of my right hand yesterday. You’d think I’d remember hitting my hand that hard, while I was doing some work the other day. It’s at a really tender spot on my hand, too — where the tendons/ligaments are close to the skin, and it hurts like hell when I knock my uninjured hand against something.
That’s the kind of injury you’d think I’d notice. But no, I have no recollection of having hit my hand, and for all I know, I didn’t even notice when I got hurt.
This has happened many times, before — bruises typically show up on my legs and arms after I work, and I’m not surprised. I’m a bit of a bull in a china shop, that way, so I expect to get banged-up. I always have, and I figure I always will. But not being able to remember when it happened… that’s a challenge. How the hell am I supposed to explain that to doctors, when they ask me what happened? The worst case scenario is that they think I’ve got some serious mental illness from past trauma, where I block out the experiences (some of my therapist friends of years gone by ran that one on me), and they think I’m living in an unsafe environment.
Please. It’s not that. I just can’t remember.
I’ll have to make a note of this and discuss it with my neuropsych. That, along with the patterns of developing headaches after exercise and raising my heart rate.
But I digress.
The point is that I have really changed how I live my life, to work with all these issues I’ve got. In the past, before I started my TBI rehab, my life was really run by all my issues, and I just accommodated them and lived in a very limited state. I let my emotions run me, and I didn’t deal well at all with all the “details” of my neurologically varied life. Everything ran me — through my emotions. The anxiety was out of control, I battled through each day with constant headaches and dizziness and pain, I struggled constantly with the ringing in my ears and the memory problems, and I was frankly just grateful to get through the day.
Over the past 5 years or so, since learning about TBI and getting a much better understanding of my situation and what I can do about it, my approach has changed. I do what I can, I accommodate what I can, I address what issues I can, but I don’t let them stop me. I do what I can, learn what I need to know, and just keep going. And that means a laser focus that shuts out everything that might distract me from my ultimate goal.
My ultimate goal can be as simple as getting out the door and on my way to work on time. Or it can be as dramatic as launching a new business venture that has a lot of promise.
But even with all my focus and intention and intensity, I still have to take things slower than I’d like. I have to slow down and think things through much more thoroughly than ever. I’m much more deliberate than I have ever been. I realize now that the impulsiveness that I always thought was “freeing” is actually keeping me from really living the best life possible. And when I don’t slow down, I pay the price for careless mistakes. Pacing myself has turned out to be my secret weapon in getting my act together and getting on with my life.
But the slower pace still makes me nuts. Some days, I don’t wantto have a list of things to be done, and check it frequently to see what I’m supposed to be doing. Some days, I don’t wantto have to think through every little thing and weigh the pros and cons. Some days, I just want to wing it and see what happens.
Unfortunately, I often discover that “winging it” sends this little bird into the engines of a passing plane. Not good. And not just for me.
So, I learn — and re-learn — the best way for me to do things. Even though it makes me nuts, it’s worth the effort and inconvenience.
But it gets lonely, for sure. Some days, I feel like I’m the only one in the room who’s not “getting it” immediately. I have to ask my coworkers to repeat themselves. I participate in conversations at work that I feel like I should understand, but I’m not getting all the details. And the details that others seem to grasp very quickly, I’m still muddling over in my head, which is painfully apparent when I am speaking up later in the meeting, after everyone has moved on, but I’m still stuck on earlier details. It’s embarrassing. I’ve got more professional experience than all the folks in the room combined, but I can’t seem to access it nearly as quickly as they can.
The thing that sucks the most, is that addressing this shortcoming is almost impossible. Because later on, I can’t remember the exact details of what all happened, and I can’t explain the situation very well to the one person who could help me. It’s very unclear. And I get all garbled and turned around, when I try to explain to my neuropsych. So, I suspect they don’t really appreciate the depths of my difficulties… because I can’t seem to articulate them in a way that makes any sense to them. They seem to think that I’m overreacting, that I’m getting overly emotional about things, or that I just have a poor self-image. In some ways they do get that I have issues — my accounts of road rage and picking fights with police officers is a pretty clear tip-off. But in terms of work, I just can’t seem to express what’s really going on with me with my processing speed and comprehension problems, and how much of a problem it is for me.
So, I need to come up with a better way of handling this — not only rely on my spotty, Swiss-cheese memory (such as it is) to relate my experiences, but actually write down what happens, when it happens… and give it to my neuropsych to discuss when we meet. That way, I can record what happened at the very time it happened, so I’m not showing up babbling and blubbering and fumbling around the disorganized filing system in my head, looking for relevant pieces of information.
Yeah, I’ll find a better way to address this with the trained professional who can help me.
But it’s a tough one, because I swear to God, we could meet for two hours a day, every day, and I would never run out of issues to discuss and address… but I really need to check in with someone who actually believes in me (without some ulterior motive or hidden agenda), like they do. Seeing my neuropsych every other week is an essential boost to my self-confidence, and if I spend all my time talking about the sh*t that gets in my way, I’ll never have any positive feedback about the things that are going right, that I’m handling well.
I really need that bi-weekly boost. Because it is so disheartening to live this life, sometimes. I’m just a shadow of the person I used to be, and I’m not often a fan of the person I’ve become. I used to be so sharp, so quick, so bright. And the people who knew me “back when” whom I still keep in touch with, seem a little surprised at my present plodding state of mind, when our paths cross every few years or so. It’s disheartening, to say the least. I know I should be smarter and sharper and quicker and funnier. I used to be. But now I’m not even sure if I remember how I used to be.
It’s very “Flowers for Algernon” — like at the end of the book when the mentally challenged guy who took the meds to help his brain, is losing the positive effects of the drugs and is going back to how he originally was. It’s kind of like that for me. Only I’m not going back to where I used to be, and I don’t much effin’ care for this experience.
It’s like all of a sudden aging — and realizing how quickly you’re going downhill.
Anyway, I don’t want this to turn into a pity-party. I get tired of hearing myself complain on the inside of my head about the things that don’t go right. This winter, I’m not alone. I haven’t been the only person who’s been slowed down, and it’s kind of uplifting to see that just about everyone around me has to take things slower. And in fact, because I’m accustomed to taking things slower — walking more carefully on slippery snow and ice, taking my time at intersections, and being more methodical in my snow-moving and rain and wintry mix techniques — I’m actually able to move faster and better than a lot of normal people around me, when weather conditions get tough.
For once, I’m the one who’s sitting pretty, just taking care of business like this happens every day.
Because for me, it does. The slower pace, the more deliberate actions, the mindfulness and caution… yeah, this is old hat for me. And because I’m plenty practiced at taking it slow, and it infuriates me a lot less when things aren’t going exactly according to my plan. It doesn’t ruin my day like it does for so many others who can reasonably expect things to always go smoothly for them.
So, in that respect, dealing daily with all the additional stuff I have going on, is actually helpful, in trying situations.
But I could do with fewer trying situations.
Couldn’t we all…
Well, enough of my belly-aching. It’s time to get on with my day and see what’s coming down the pike.
So, I had a pretty good Thanksgiving. It was good to be with everyone, but I also burned through my money on gas and incidentals. It was cheaper than flying, but it’s still expensive to drive all that way.
Anyway, now I’m back and I get to resume my regular routine. I can get back to my daily work and start eating the foods I prefer to eat, at the times I prefer to eat them. I can get back to my usual “grind” which isn’t a grind at all – it’s quite pleasant, actually. I have refined it and honed it, to where I am pretty productive everyday, but at the same time, I also have room to move and breathe and make plans and preparations for what’s next in my life.
I have been thinking a lot, lately, about the issues I have understanding others. I have especially been thinking about the time, back around 1988, when I was in a car accident, got hit on the driver’s side of the car, and all of a sudden, I couldn’t understand what people were saying to me. It was especially difficult with people who had non-American accents – when they were talking to me, it sounded like they kept “clipping out” — like an old movie that has a choppy frame rate. In and out, in and out, getting only small pieces of what they were saying.
It was a big problem especially because they were my boss, and I could not understand what they were saying at all. So, I quit. It was a temp job, anyway, but to quit work… that’s something that was very unlike me.
That’s one kind of trouble understanding – just not being able to hear.
The other kind of trouble understanding (as I think about it) is needing enough time to catch up with what someone is saying to you. That’s what I’ve got going on now.
I often have to ask people to repeat what they said, because I need a minute to switch gears and catch up with them. I’m not stupid. My brain just processes information a bit differently, and that takes a little more time. I’ve tried to speed things up, but it doesn’t always work. It’s especially bad, if I’m in an “open environment” at work, where there are so many, many distractions. That is truly maddening with all the visual and auditory stimuli crowding me, and it makes it really hard for me to understand what people say to me right away. I usually have to ask people to repeat themselves.
I used to never do this. And it was a huge problem for me. In fact, not being able to hear — and never asking others to repeat what they said — had me blocked into a dark corner, where I was pretty much guessing all the time at what people were saying to me and what we were talking about. I have to admit, I’ve gone back to a bit of that — faking my way through. But this time, I’m aware of how spotty my working memory is, and I’m aware of what a hard time I have understanding people the first time they say something to me, so I really work at making up for the lapses. I take steps to actually “get” what others are saying to me.
There are several factors that come into play with me:
Not being able to make out sounds, the first time I hear them. I actually can’t hear the sounds if I’m not listening closely — it sounds like a garbled jumble of noise, and I have to really attend closely to get what others are saying.
Being subject to tremendous distraction in the environment I’m in. Especially at work, where everything is open and countless sights and sounds are competing for attention. Having visual distractions actually makes hearing harder, because it distracts me from what I’m listening to. It’s really hellish, and as much as I’d like to make the best of my current situation, there is no way. No way in hell. In the spring, I have got to go, if they don’t reconfigure the environment.
Slower processing speed, thanks to multiple concussions/TBIs. It’s bad enough when you can’t make out sounds, and when you have to deal with heightened distractability. But when your processing speed is slower than you’d like… triple-whammy. Everything slows down – it’s just crazy. And it’s exhausting, because I have to work so hard at processing everything. I sometimes feel like people avoid dealing with me, too, because I have to slow them down and our conversations can be so plodding. What fun is that? Not much for them, and certainly not for me.
Small wonder I’ve gone back to faking my way through a lot of conversations. It’s just so laborious at times, and I feel like such an idiot, not being able to “get” things right away. I can fake it through many situations, but eventually people tend to figure out that I’m fudging my way through, and then things start to come down around me.
Small wonder, I do so well with computers and prefer them and their company to real-live people who have no knowledge or compassion about my situation. A computer won’t yell at me and force me to “keep up”. It just says “yes” or “no” and always gives me another chance.
Others try to reassure me that I’m doing fine, that I am not impaired but they cannot see or feel how slow it is for me, and how hard I have to work at things. I try to explain to my neuropsych, but they cannot imagine what it’s like because we always meet under ideal conditions — in a quiet office without any distractions or pressure, and no terrible consequences for screwing up. I would venture to say that I am a very different person in my NP appointments, than I am in the outside world. I just wish I could communicate that to them.
Well, anyway, my work day is about to begin. I am working from home this morning — have a few conference calls I need to make, which requires a lot of listening and understanding. The thing that works in my favor is that I’m talking to folks outside the USA, and we ALL have trouble being understood. In a way, my difficulties make me easier to work with, in that respect, and I can offer my colleagues a lot of leeway they don’t get with my other American colleagues, because most people don’t understand what it’s like to have trouble understanding what others are saying to you.
But I understand. Very well, in fact.
So, now it’s time to go and put that knowledge to use.