Not myself, this past month or so

I hate to admit it, but for the past month or so, I haven’t felt like myself. That is, the self that I had come to know myself to be, over the past years… the self I had trained myself to become — and to notice.

I’m not whining about it. I just need to go on record, so I remember it later. Not all is hunky-dory, and I’ve spent an awful lot of time masking all this and keeping myself from thinking too-too much about it. That’s counter-productive. I hate hearing myself talk about what’s wrong, but I need to be aware when things are not ideal, so I can do something about it.

I haven’t got time right now to chronicle everything I am doing to address these issues, so for now, I’m just going on record.

Lately, I’ve felt like things are unraveling… starting back in September when my PCP died, and the only doctor I ever felt comfortable with was gone forever.

Then in October came the announcement that the company I work for is being acquired, and all the assumptions and plans I had about my future (going back to school, getting my degree, staying on there until I could finally retire)… that all became incredibly tenuous.

Then in November my neuropsychologist tells me that they’re retiring this coming spring, and the one working relationship I’ve ever had with anyone who didn’t make fun of me or treat me like there was something wrong with me when they simply didn’t understand, suddenly got an expiration date.

The car needed a couple thousand dollars of repairs over Thanksgiving, and my bank started warning me that I was low on funds.

And then in December I find out there will be layoffs, and I and my group barely missed being cut. Someone I really depended on for advanced technical support got laid off, so now I’m sorta kinda hung out to dry, in one respect.

It’s just been a heck of an end of the year.

At least my spouse and I are reasonably healthy (aside from some nasty colds — knock wood), and we’ve had no other calamities. But piece by piece, some of the main supports I’ve been relying on, have been removed.

I guess it’s time to find new ones.

And it’s been strange. I haven’t really felt like myself for over a month. I’ve been a lot more on edge, blowing up more at my spouse, getting confused and disoriented at work. At Thanksgiving time, I was balancing between completely losing it and letting off very controlled bursts of angry steam. And while I’ve rarely been a real Christmassy kind of person, this year especially I just haven’t been in the mood. The weather has been strange, but after the absolutely sh*tty winter we had last year, I don’t care that it’s going to be warm and sunny on Christmas Day. That’s this Friday, and, well, it can come and go, for all I care.

I just don’t feel like myself. Nothing seems worthwhile, and in all honesty, the only thing that brings me total satisfaction is trapping the mice in my basement. I rigged up several traps on a little ledge where I’ve seen them run in the past, and I’ve caught four of them, so far. I have a feeling I’ll be trapping all the mice in the neighborhood, by the time all is said and done, because my garage is not very well sealed, and I’ve seen them come in through gaps in the trim. Right in front of me. Brazen.

Well, now those little brazen bastards are getting dead. And while I do feel pang of quasi-Buddhist regret that I’ve taken a life, I do NOT feel regret that these creatures aren’t running amok through my basement. I figure, I’m releasing them to their next incarnation — just speeding up the cycle of life for these rodents.

It’s not the death that appeals to me. It’s the yes-no, success-failure, instant gratification of seeing that at least something I’ve done is working. It’s basic. It’s primal. And I’m managing to successfully defend my castle against at least some maruaders.

I just wish I felt more like myself, instead of being shaky and tired and disoriented and prone to error. I’m spaced out, a lot of the time, I feel like I have more on my head than I can handle, and while I’m sure things will be fine and I’ll be able to handle whatever comes along, it’s still tiring, and I feel like I’ve lost my mooring.

Maybe I have. Maybe I have.

I just have to get it back, I guess. It’s now officially winter, and I’m ready for it. I just want to hibernate, go underground, and maybe that’s what I’ll do, more or less. The last several months with the company change have been very chaotic and unsettling for myself and everyone at work. It’s next to impossible to make any plans, and nobody knows what the criteria are for deciding who stays and who goes. Nobody can give us any clue, either, because that might tip their cards, and everyone might just take matters into their own hands, and then the deal might fall apart.

So, hibernation (figuratively speaking) might be the best thing to do. Keep everything simple and lay low. Cut back on social media (which I have). Stop reading the news (which I must). Concentrate on what matters most to ME (not the rest of the world). And focus on the basics — eating right, exercising regularly, and doing things that appeal to me and that I love and which also make a constructive contribution to the rest of the world.

I also need to get back to dealing with the logistical issues that come up with me. Sensory issues are problematic — light and sound and touch have been giving me problems. I’m dizzy a lot — almost fell over the other day for no good reason. I’m space-out, foggy, and I feel a split-second delayed, though that could be a symptom of me still being sick. I have problems typing, and my handwriting is a mess. I skip the first letters of words while I’m writing in long-hand, which is a new one for me. My temper is short, I’m getting “snappier” than usual, and I have bouts of intense depression. And lately, the headaches are back, along with the episodes of sudden pain shooting through my head, followed by feeling dull and out of it.

But hell if I’m going to take that Imitrex. F*ck that sh*t. Talk about feeling spaced-out… I feel bad enough as it is, without adding medication to it.

So, I do my breathing exercises and get my head out of a stressed-out space, and it helps a bit. It also helps to ignore it and just get on with my life. But the headaches are getting intrusive, again, and when people like my chiro or my massage therapist ask me about them, it just irritates me, because the things they do for me don’t actually seem to help all that much, but they’re so convinced that those things are The Ticket. It’s nice that they try, and I know they want to help, but there’s nothing that seems to really Work for me. Not these days.

And trying to explain that to them is a pain in my ever-lovin’ ass. People get so sensitive and offended and frustrated when I tell them what they do is not working. No science, no tweaking their approach. Just getting irritated and frustrated — and keeping on doing the same thing as before. So, I quit saying anything. Because even when I try to explain, it doesn’t help.

It’s the classic tension between what appears to be, what people think really IS, and what my experience of things is. And that fragmented collection of disconnects makes me absolutely crazy.

That, and the fact that my weekly schedule is about to change, with my neuropsych seeing me on Fridays at noon, instead of Tuesdays at 5:30 p.m.  Argh! Change! I hate it!  And I hate that it makes me so unsettled. I wish it weren’t so.

But bitching about it won’t change anything. I just need to get on with my life.

My new mantra: Screw it. Onward.

And in the end, we learn…

Some days you nail the holidays, sometimes the holidays nail you.
Some days you nail the holidays, sometimes the holidays nail you.

This trip to see family for Thanksgiving has been chock-full of lessons. I’m still sorting them out. Some of them, I may forget, by the time I get home, so I’ll write them down here, and come back to them later.

  1. Having a perfect life is no guarantee of happiness.
  2. The people who appear to be the most powerful and privileged are often suffering under terrible burdens. Sometimes it’s their very burdens that drive them to be more poweful and privileged than anyone else.
  3. People who are innately talented and sharp, don’t always end up in the best circumstances. People who work-work-work their asses off can accomplish great things.
  4. The people who seem to be the most wealthy, are often very poor in their own hearts.
  5. It helps if you’re attractive and have a ready smile.
  6. People are surprisingly judgmental of others who are simply different.
  7. No matter where you look, there are people in some kind of need.
  8. People dislike having to question their most fundamental beliefs. They’re a whole lot easier to get along with, if you pretend to agree with them — or at least don’t judge them.
  9. Most people I know are very set in their ways about how women should act, and how men should act. Come to think of it, they’re very set in their ways about how “normal” people should act.
  10. It usually pays off to keep your head about you and maintain a cool demeanor.
  11. If you can’t do #10, step away. Give it a few minutes.
  12. Getting enough sleep, drinking enough water, and eliminating regularly, will do wonders for your interpersonal relationships. It’s all about the flow…
  13. Life is short. Be kind.
  14. Sometimes, all it takes to get people back on track in mind and spirit is a long card game.
  15. Winning a hand of cards is restorative. Losing gracefully, four hands in a row, is ennobling. Having a good laugh at yourself being a sore loser is good for everyone at the table.
  16. Many things are awful. But they pass. It makes no sense to let awfulness get hold of you and trick you into thinking it will last forever.
  17. Everything looks easier in hindsight.
  18. All those old resentments I held against my in-laws for having so much more than me, and providing so much more to their kids, now pales compared to the peace I have in my life. They don’t have that peace. Their opulence is not saving them.
  19. My “country hick” insecurities around my in-laws are still there. I still feel like an idiot when I am around them.
  20. However, I have not understood the source of my insecurities, till recently. I thought, for years and years, that I was less intelligent than they, and I was too slow. As it turns out, by the time we reach their home, I am usually exhausted from driving, my sensory issues are out of control, after dealing with my own family, and I am literally not myself. My ears are ringing, I’m slowed down by fatigue, my noise and light and smell and touch sensitivities are all on HIGH ALERT, and I can’t understand what anyone is saying because the television is usually blaring. It’s a total onslaught of sensory overload, which my in-laws have to immerse themselves in, because they are so deeply unhappy as they follow all the rules, and they need something to dull their intense pain.Their coping mechanisms make it very difficult for me to function. It’s not me, that’s the problem, it’s the environment.
  21. My in-laws are trapped in a “perfect” life, doing things they never really questioned, and their difficulties with that are simply too much for them to handle. They’ve decided to be happy, simply being successful and popular, everything looking good on the outside, but deep down inside, being so sad and lonely.
  22. My in-laws cannot accommodate people who are different. They get disgusted with people who aren’t functioning”normally” due to invisible conditions. They don’t understand how people can have limits that are difficult to explain, and you don’t live up to their specific expectation of how you “should” function, they can get pretty mean-spirited. Their intentions are good, but their follow-through sucks.
  23. My parents are surprisingly resigned to getting old and infirm. Well, my father is, anyway. He’s giving up and giving in… I read some things he wrote, and it makes me sad that he’s not fighting it more. He’s got a lot of years left in him, but he’s talking and thinking like he’s going to die before long. His handwriting has gotten noticeably worse over the past year. I think his diabetes is catching up with his brain function. And I’m literally not sure when/if I’m going to see him again.
  24. My family is much better at accommodating individual needs and limitations, than my in-laws. My in-laws think a pill fixes everything, while my family believes community fixes everything. Small wonder. We’re all a bunch of farmland hayseeds, here, and there are plenty of “neurodiverse” people in our midst, due to brain injuries, congenital defects, poor medical care, etc. There are a LOT of “different” people here, so folks know how to handle them, for the most part. And the social rules here are so strict, everybody knows what they should be doing in any given situation, so it makes it possible for people to function, without thinking much about anything. It’s interesting.
  25. Holidays are borderline hell for me. There is TOO MUCH ACTIVITY, and the expectations are too high. It’s TOO LOUD. Too many smells and changes in routine. I dread it. Every bit of it. Including all the parties and social activities. And the holidays are not easy for my spouse, either, who also has sensory issues but is less aware of them.
  26. Both of us struggle terribly, at times, so it’s important for me to keep my act together, so only one of us is going off the rails at the same time.
  27. I am so happy to be driving home today. It’s a full day’s drive, and we’re going to take our time. Get out and stretch. My left hip is killing me. Not enough exercise.
  28. I’m glad we made this trip. And I’m even more glad to be going home.

And now, it’s time for a walk.  A long, long walk, before I get in the car and sit for 9 hours.

They say it’s the brain, but it’s also the body

It's ALL connected
It’s ALL connected

TBI can seriously mess you up in the head. That’s a given.

But it can also seriously mess with your physiology.

In fact, out of all the problems I’ve had over the years, the physical issues I’ve had have far outweighed the cognitive ones – if anything, they contributed to my cognitive and behavioral issues.

  • Fatigue – bone-crushing, spirit-sapping exhaustion;
  • Problems keeping my balance, which messed with my moods.
  • Heart rate increase – or decrease, as well as blood pressure changes.
  • Light and noise sensitivity.
  • Headaches
  • Body aches
  • Sensitivity to touch, which really messed with my head, as well. Imagine never being able to have human contact… it’s not much fun.
  • Constant adrenaline rush that wired me out, something fierce.

When your brain gets injured, it can affect your whole body. Because as we know, the brain is mission control for the rest of the works below the neck.

 

Finishing what I started… in 2009

It’s been over 5 years, since I started the book I’m finishing right now. It’s about sensory issues,and how they affect my life each day.

It’s my hope that this book will shed a little light on what it’s like to be acutely sensitive to light, sound, touch, and how it feels to have your balance severely impacted.

It’s a full-spectrum experience, and it’s not much fun.

Sensory issues have been a real problem for me, ever since I was a kid. And only in the past six years or so, have I actually been able to get my head around them — and do something about them. Food allergies were a big culprit. As well as stress.

Of course, when you’re not aware of what’s stressing you, it makes things even more stressful — a self-fulfilling prophecy, if ever there was one.

Anyway, I’m going to finish the book, at last. It’s not long. It’s about just one day. I need finish it, once and for all. I don’t want to complain. Just explain.

Because I know I’m not alone in this.

The ghost and the machine

It’s all about your perspective – “Ghost in the Machine” by linnsetane

I had a pretty good weekend — no, I had a pretty phenomenal weekend. I had an exquisite balance between body, mind, heart, and spirit, that I haven’t felt in some time, and I actually felt like myself.

Again.

It’s been a long time, since I truly felt like myself. I was reading and studying again, doing some journaling. I did chores around the house and cleaned up outside. And I was out in the woods a whole lot, with naps in between.

I didn’t “accomplish” some of the goals I set out to do, but you know what? I don’t care. I feel really solid, and that matters more than any external goals I set for myself. On Fridays, my weekend goals seem so terribly important. But by Sunday morning, I’ve “rearranged the furniture of my interior life” and a whole new set of priorities come out, which are a lot more life-giving than the ones I identified on Friday last.

It has taken me a long, long time to get to this place. I have been “in the woods” in a not-so-good way for many years, and at last I’m at a really stable place, where I’m not all over the map for no good reason.

Now, in some ways, I still feel strange to myself. But that strangeness has actually become an integrated part of my life now. See, the thing is, I don’t just see myself as a person whose character is set in stone — and that’s it. I see myself now as more of a person whose character is constantly developing along certain lines that are “me” — it’s not the particular details of how I’m feeling and what I’m doing, that make “me” the person I am. It’s actually the process I go through to get where I’m going, that makes “me” the person I am.

For example, I am usually in pain of some kind or another. Either I have a pulled muscle or I have a headache or a backache or joint pain. I literally can’t remember the last time I did not have some kind of pain — and this goes back to my childhood, when I had a very rough-and-tumble kind of life and I was usually getting scuffed up or knocked around by someone or something or other. I was extremely sensitive as a kid, and a lot of times, if someone touched my arm or my back, it felt like I was being hit. It stung like fire ants or burned like fire or it felt like someone had me in a vice and was twisting. Being young, I couldn’t really explain it. That’s just how it was.

And when I was younger, because of that, I felt like I was always being punished. Because when you were really bad, you got hit or paddled or yanked around by an adult. And that hurt. But I wasn’t being constantly punished — I was just having that kind of experience without any connection with reality. My body didn’t realize it, and my mind couldn’t process that.

So, I’ve had this complex — pretty much my entire life — about being a bad person who needed to be punished.

Well, now that I know more about my situation, that’s not burdening me anymore. I know that my sensitivities are connected with how much tension I’m feeling — when I’m tired or stressed or upset — and they’re not about me being a bad person who should be punished. Pain is happening because I’m doing good things — not bad things. Pain is a sign that I am genuinely trying to do better and be better.

It’s like after a hard workout. Your body is absolutely wracked for days on end, while it recovers and gets used to the “new you”. It’s not a bad thing — it’s a by-product of a good thing, and it will totally be worth it in the long run.

So, I have a completely different view of my pain, these days. And I have a very different attitude towards my experience. Thinking of my pain as the result of me pushing harder to be better, makes the pain about me being driven to be better. That’s a far cry from the old way of thinking and feeling — which was all about me being bad and deserving to be punished.

It’s kind of a “no pain no gain” mentality — “pain is weakness leaving the body” and all that.

So, while I don’t feel physically peachy-keen, most of the time, which at times makes me feel really terrible about being in my own skin, the way I think about feeling crappy has actually restored some of my sense of self. Rather than the pain meaning that I’m deficient, it means that I’m genuinely trying to do better, that I’m motivated and really trying. Waking up today with a headache and fatigue means that yesterday I wanted to be better, and I did something about it.

It’s not about me being in an ideal state at any given point in time. It’s about me being in the middle of a process of improvement that is taking me towards a variety of ideals which I can experience at different points in time. Life isn’t always going to be perfect. Where would be the challenge in that? In fact, it seems to me that the more “yourself” you are, the most challenges you’re going to face, because life likes to keep us guessing — and so do we. I have seen so many people unconsciously create situations that get them in trouble, and I’ve seen so many “good” people dragged into complicated messes, that after close to 50 years of wondering “WHY?!” it’s all I can figure.

Being a good person doesn’t mean I’m going to have all good things happen in my life. It means I’m going to have plenty of opportunities to create more good in the lives of myself and everyone around me, no matter what the circumstances.

And that goes for TBI. Lemme tell you, it has been one tough motherf*cker, getting through this, and in a lot of ways, I feel like the “old me” is gone for good. But the “new me” — or maybe the “real me” that I never recognized before — is not so much about being a certain way in certain circumstances, thinking certain thoughts and having certain feelings about things. Maybe the “real me” is actually a dynamic personality who is constantly learning, constantly changing, constantly leaving the old behind.

I think that once upon a time, I knew this. I cleaned out my study, over the weekend and found some old journals from 20+ years ago. Back when I was still wet behind the ears, I had this amazing capacity for fluid adjustment. I think because everything around me was changing all the time, and the multiple TBIs messed with my head so much, I realized that it was pointless for me to try to hang onto anything for long. But then I “grew up” and got all adult-like and what-not, and for some reason, I had it in my head that “I” was a certain way, and that “I” wasn’t going to change.

How strange.

It got worse after my 2004 injury — my thinking just got so rigid and fixed and brittle. And now that I think about it, that “self” that I felt I had lost… that “self” may have never even existed, because my thinking was so one-dimensional and fixed. I had this vision of myself in my head that was distorted and confused, and for some reason, I thought that was “me”.

It was like going into a funhouse and looking at all the mirrors, and then deciding that one image of myself I saw was THE REAL ME, and I invested all kinds of energy in hanging onto that distorted image of myself. Even though it was as far from “me” as you can get.

So, this weekend, it was all about the process. All about loosening up, all about cleaning out dusty spaces and getting things in order. My study is still in some disarray, but that will change. Gradually, I’ll work my way through — one shelf at a time. And by this time next year, there’s no reason to think that it won’t be in decent shape.

Truly.

So, that’s the result of my great weekend. It felt so good to just let go of the Friday-fatigue-flavored expectations of last week and just let things flow. Letting things flow didn’t get me “off course” – if anything, it let me get some rest and more inspiration for the coming week. Now I’m coming back to my work week with a renewed energy and a better understanding — the machine of my life is just that: a machine. But it’s the ghost that does all the driving.

Can you tell Halloween is coming? 😉

Onward.

I’m not necessarily slower – I just have more to think about

Choices, choices…

I’ve been thinking a lot lately about concussion/tbi making you “dumber” – slower, etc. When I had my neuropsychological exam, it became painfully clear that my processing speed was slower than expected. And it really bummed me out for quite some time. Plus, once I was aware that this was happening, it seemed like I couldn’t do anything without being painfully aware that it was taking me a little longer to process things than I (and others) expected it to. For some reason, everybody just expected that I’d be able to respond immediately to their questions or comments or conversation starters. But it just wasn’t happening.

After thinking about this from a bunch of different angles, I had a bit of a revelation this morning. It was something I’ve thought about before (and maybe I’ve written about it before – I can’t remember), but this morning it really made a whole lot of sense:

It’s not that I’m necessarily slower or dumber than I “should” be — or than I used to be. The thing is, after my TBI(s), I became so much more sensitive to a lot of different stimuli, and my brain has to work harder to sort through a larger amount of input, than before. It’s like the injury/-ies put holes in the filters that are usually there, allowing in a whole lot more input and information — sensory, like light and sound and (sometimes) smells and touch/feeling — and all that has to be factored in. It’s like my brain has to work harder to shut those things out, and since concussion/TBI has a way of activating your sympathetic nervous system fight-flight activity, you’re even more alert to all the stimuli around you…. constantly scanning and checking things out and sensing for danger, where it may or may not exist.

I’m sure I’m not the only one who has this.Maybe someone else can confirm/affirm this for me?

Think about it – say you give someone a deck of cards to shuffle and sort. Then you give someone else two decks to shuffle and sort, while they’re having a conversation with someone and an important piece of news is playing on the t.v. behind them. If the two people race to get done with their shuffling and sorting, the person with the two decks of cards are is going to take longer — because they have more to sort through, in the first place. And they have these other distractions going on around them.

That’s what it’s like after concussion/TBI – so of course I’m going to seem “slower” than others — when in fact, my brain is actually working harder, and perhaps even more efficiently than others, because it has so damned much stuff to sort through.

I think this can also explain why folks after TBI have the same IQ level as before, only now their processing speed is slower. I’d like to challenge the idea that processing speed is actually slower, in fact. Because regular measures probably don’t factor in the distractions and added sensitivities that have to be filtered and processed. Heck, if you look at the sum total of all the activity, it could be that post-TBI, your processing speed actually increases — but your brain is so busy trying to sort things out and re-categorize them and figure out what it all means (all over again) and re-learn the old past familiar things… not to mention battle against the rising dismay that things “don’t work like they should” and the wondering “what the hell is wrong with me?!” … that the end result and net effect looks like you’re stupid and slow and not keeping up.

That’s my theory, anyway. Although it’s almost purely anecdotal, it’s consistent with my experience, so I’ll have to go with that.

It’s ironic, isn’t it, that we go through these things that actually make us stronger and more active, but people who don’t understand and don’t share our experience (including researchers and doctors and therapists and other certified experts), will label us as “weaker” and “less active” and “stupid”… all because they just don’t get it, and they can’t see why they should change their opinions.

I’m not sure what it will take to change this, but for the time being I feel pretty good in my own changing understanding, and it’s giving me some relief from that nagging sense of being stupid and slow and (excuse the expression) retarded.

Anyway, it’s a beautiful day, it’s Memorial Day — so, here’s a big THANK YOU to all who have served, and are serving, and to all who have paid the ultimate price out of love and service and duty. I probably wouldn’t be sitting on my back porch watching the dragonflies making their rounds this morning, if you didn’t do what you do. So, again, thank you.

But enough of the talk. It’s time to get into my day and enjoy myself with friends and family. Here’s hoping you can too.

I haven’t got time for the pain

I haven’t got need for the pain, either.

I confirmed something very important, this past week – if I do not exercise vigorously, first thing in the morning before I do anything else, I pay for it in pain.

For those who know what it is like to battle chronic pain on a daily, weekly, monthly, yearly basis, over the course of months, even years, you know what I mean, when I say, I will do anything in my power to keep this pain from taking over my life.

For those who are lucky enough to not have that experience, you can say instead, I will do anything in my power to keep [insert something you detest and despise] from taking over my life.

I happen to be one of the former types, plagued all my born days (at least, as far back as I can remember) with pain. Painful touch. Painful movement. Painful just about everything. The only times I have been pain-free have been in the extremes of human experience — when I am either so deeply engrossed in what I am doing that my focus blocks out any sensation at all… when I am pushing myself beyond my limits to see how far I can go… when I am so deeply relaxed and entranced that nothing of human experience can penetrate the divine aura that surrounds me.

In those extreme places, I am free of pain, I am more than myself, I am a piece of a very, very, very large puzzle that dwarfs discomfort with its vastness.

But one cannot always live in the extremes. I’m neither a cloistered monastic, nor a sheltered academic, nor a professional athlete, nor a maverick rock climber. I am a regular person with a regular life, and that life just happens to be fraught — at times — with almost constant pain.

Ask me if I have a headache on any given day, and my answer will not be “yes” or “no”, but “what kind of headache?” and “where precisely do you mean?” It’s a given, that my  head will hurt. And my body, too. It’s just a question of degrees.

At its worst, the pain is debilitating. 20 years ago, I had to stop working and drop out of life for about 5 years to get myself back on my feet. Over the decades since then, the pain has fluctuated, its impact on my life varying. The variation has been due, in no small part, to my mental determination to not let it stop me. In many cases, I refused to even acknowledge it, even though objectively I knew it was there. I went for years telling myself  I was pain-free, while at night I would be forced to stretch and press points up and down my legs and take plenty of Advil to get myself past the searing ache in my legs, hips, and back.

Denial is a funny thing — so useful, so essential, at times, and so easily used, even when facts to the contrary are obvious and intrusive.

Over the past several years, however, as I’ve become more and more cognizant of my TBI-related issues, pain has made itself known to me, and I have ceased to deny it. It’s a double-edged sword, that. Even if I don’t deny it and am determined to do something about it, my plans don’t always work, and I cannot always accomplish the level of pain control I would like.

In those moments when my honesty is far more than my ability to deal effectively with my discomfort, I curse my newfound determination to be upfront and frank about every little thing that is amiss with me. I have so many other issues to think about — do I need to add unstoppable, unmanageable, uncontrollable pain to the mix? Wouldn’t it make a whole lot more sense, to acknowledge and focus on issues I can actually fix?

But now that the lid is off Pandora’s box, there’s no sticking it back on. I have to address this pain situation, I have to do something about it. I cannot just sit around and boo-hoo. Nor can I run away from it and keep telling myself it’s not an issue. It is an issue. A very sticky, troubling, problematic one that holds me back, perhaps more than any other issue I have. It’s not just physical, it’s emotional and psychological, too. And it demands acknowledgement and work, to address it.

So, I do. I get up in the morning — like it or not — and I exercise. I roll my aching, complaining body out of bed, pull on my sweatshirt over my pajamas, slip my feet into my slippers, grab my clipboard and pen, and I haul my ass downstairs. I fill the kettle with water, put it on the stove, and turn the knob to 3 or 4, to give myself plenty of time to work out before the water boils. Then I pull the curtains in the room where the exercise bike is, so I can work out in private, put my clipboard on the magazine holder on the exercise bike, climb on, make a note of the time I started, and I begin to pedal.

I ride for at least 20 minutes — 15, if I’m really behind in my schedule — and I work up a sweat. I hate and resent the first 10 minues of every ride. It is boring. It is monotonous. It is sheer drudgery. But it is necessary. If I don’t exercise, move lymph through my veins (the milky white substance that moves toxins out of our systems doesn’t move on its own — it requires circulation to clear out the junk we put in), and oxygenate my brain.

After the first 10 minutes, my brain has started to wake up and is complaining less about the ride. About that time, I start to think of things I’m going to do for the day, and I start to make notes. I scribble on my clipboard, trying to control my handwriting well enough to read my notes later, and I make an effort to be careful and legible. On and off, I pick up my pace and push myself, working up a sweat and an oxygen debt that gets my lungs pumping. When I’m warmed up and getting into a groove, my mind wakes up even more, and I let it wander a bit — kind of like letting a squirrelly puppy off its lead when you take it for a walk in the park. I let my thoughts ramble, let my mind race here and there, and then like walking a puppy, I eventually call it back, focus once more on my day, and make more notes about what I need to accomplish.

When I’ve reached my 20-30 minute mark, I stop pedaling, get off the bike, and go check on my hot water. I turn up the heat, if it’s not already boiling, and stretch in the kitchen while the kettle starts to rumble. When the whistle goes, I make myself a cup of strong coffee, and while it’s cooling, I stretch some more. I drink a big glass of water as I stretch, feeling the muscles and tendons and fascia giving way to my insistence. I’m warmed up, after pedaling, so I can stretch more easily. I can move a lot better than when I got out of bed, and I’m actually starting to feel pretty good about doing this exercise thing, as soon as I get up.

Once I’ve stretched, I head back to the exercise room and lift my dumbbells. I work with 5 pound weights (for now), moving slowly and deliberately. I focus intently on my form — practicing my impulse control. I make sure my body is aligned properly and my motions are smooth and not stressing my joints and ligaments and tendons. There’s no point in exercising if I’m going to just injure myself. I do a full range of upper-body exercises, presses, curls, flys, extensions, pull-ups… all the different ways I can move my arms with my 5-lb dumbbells, I work into the third part of my routine. I take my time — deliberately, for discipline and focus and impulse control are big problems for me that really get in my way — and I work up a sweat as I hold certain positions and move far more slowly than I prefer.

When all is said and done, my legs are a little wobbly and my upper body is warm with exertion. I am sweating and a little out of breath, and my body is starting to work overtime to catch up with itself again.

By the time I’m done, my coffee has cooled enough to drink it, and I can make myself a bowl of cereal and cut up an apple to eat.  I sit down with my clipboard again, make more notes, review what I need to accomplish, and I get on with my day.

The days when I skimp on the effort and take it easy, are the days when I am in the most pain at the end of the day. The days when I really push myself with my weights, moving sloooooowly through the motions and keeping myself to a strict form, are the days when I have the most energy and am feeling the most fluid. The days when I don’t stretch very much, are the days I have trouble falling asleep at night. And the days when I do stretch are the ones when I am able to just crash into bed and am down like a log all night.

Two days, this past week, I did not do my workout full justice, and I paid dearly for it, the rest of both days. I learned my lesson. I haul myself out of bed, now, and I hold myself to a disciplined workout. Anything less gets me in trouble.

I’ve got enough trouble, without the pain on top of it. And if there is any way I can cut back on whatever complications I can, I’ll do what I can to do just that.

It’s hard to start, it can be tedious to do, and it often feels like an interruption to my morning, but without it, my day is toast. And I am lost at sea… floating in a brine of burning, searing agony that surely must have informed the medieval concept of eternal hellfire and brimstone.

And yet, something so simple can push back the waves, like Moses parted the Red Sea. Something so simple, so basic, so good for me. Salvation comes in strange packages, sometimes. But it’s salvation nonetheless, so I’ll take it.

After all, I’ve got much better things to do with my life than suffer needlessly.

Getting back into it…

I had a pretty rough weekend, and thank heaven it was a holiday. Gave me time to rest and recoup. I’ve been bothered increasingly by a lot of pain — “tactile hyperesthesia” I’m told it’s called. And it’s been driving me nuts. My clothes hurt me, any physical contact bothers me, and I have a hell of a time interacting with other folks who are demonstrative and like to reach out and touch you when they’re talking to you.

Times like these, I notice how tactile women are when they communicate. They reach out and touch you a lot more than men do, and it’s not only distracting, it’s also painful.

Small wonder, I tend to avoid the company of women unless there’s some structured activity going on. I’ve got nothing against women, but being around people who make a habit of making physical contact with you, when physical contact is painful, isn’t my idea of a great time. No matter how much I want to be around them, no matter how much I like them, no matter how much they want to be around me and like me, the simple fact of my sensitivities is distracting and uncomfortable and makes it very hard to interact.

With men, there’s less contact, but the ones with whom I have a good relationship also tend to make contact — handshakes, touching my arm or shoulder to get my attention, slapping me on the back… Ugh! The classic male prohibition against making physical contact with others might be poo-poohed in enlightened circles, but for me, it’s a huge relief.

The same goes for dealing with people in a highly structured corporate environment. Being in a working situation where roles are very clearly defined, and there is a code of conduct that everyone sticks with, no matter what, makes things that much easier to deal with in the course of each day. I’ve tried working for small companies and start-ups that had a more “family” feel to them. What a nightmare it was for me! Words cannot express. I ended up flaming out, several times, melting down and screwing up everything within reach, leaving those companies behind without any good explanation for why I was coming apart at the seams. The lack of structure and the “family feel” with its personal, intimate tone, seemed to be comforting for a lot of folks I worked with, but for me, it was a nightmare.

Me? I like an impersonal, detached corporate environment where nobody knows much of anything about each other’s personal lives, and nobody ever makes physical contact with each other. Call me stunted, call me damaged, call me asocial. That’s what works for me. Give me structure, and I get to be human. Remove that structure, and I start to unravel.

Anyway, I’m getting ready right now for heading out to become human at my massive multi-national corporate employer, meanwhile thinking about how to approach a new personal project I’m working on. It’s a program for tracking my issues each day. I had wanted to do it with one type of technology, but that’s turning out to be less fitting for my purposes. I need to use a different type of technology, a different programming language, which I have not been able to learn for the last 4-5 years. I started to learn it, around the time of my fall in 2004, but since then, I haven’t been able to make any headway.

Now it looks like I’m going to have to. I have no choice — this language is the only one I can use for my purposes. So, I have to learn it. And I’m freaked out. Because I’m not sure I can.

But I have to remember that I’ve recently taught myself the ins and outs of another programming language which had also eluded me for a number of years. And I am pretty proficient in it, by now. So, logically speaking, there is hope. I have to have hope. I have to believe — no, not believe, but actually know — that I have the ability to learn this stuff. Even if I have trouble reading and remembering what I read. Even if I have trouble following sequences. Even if I have trouble concentrating for extended periods of time. I was able to learn that other language. using my own learning style and a lot of unconventional approaches, and the only thing keeping me from learning this new language, is me and my reluctance to start.

So, I’ve got to start. Get myself back in the game. It’s the end of a long weekend, and the fall season is just around the corner. The five-year anniversary of my last TBI accident (and the 14-year anniversary of one of my earlier TBIs) is coming up.  I’ve been working my way back, slowly but surely, and things are looking up.

Life is good. I can get back.  And so I shall.

I can’t believe it’s back… Pain redux

I must be really stressed, these days, because lately I’ve been having an incredible amount of pain all over my body.  I think I may have overdone it, driving so much over Thanksgiving — sitting behind the wheel of my late-model Plymouth minivan has a way of doing a job on me… my hips, my knees, my back, my shoulders… But then, I’ve been having intermittent and increasing pain issues over the past few weeks. This last spate is just an unexpectedly intensified version of what has been happening for quite some time.

I’ve had various pain issues for as long as I can remember, with some dramatic spikes in the discomfort over the years, so it’s not something new for me. But this pain is different from the tactile defensiveness I had when I was a kid. It’s in my tendons and in my joints with a vengeance, and it’s really disconcerting to me, because I have not been expecting it. These days the pain is spiking at a level that I haven’t been at in a number of years. What a bummer! And here I had thought that I was getting to a pain-free state. I really did.

This most recent “spate” started some weeks ago, but I didn’t pay much attention to it, because it wasn’t getting in the way. Plus (so I thought) I had other things to think about, than the chronic pain that’s been dogging me ever since that car accident in 1988 (when I was hit from the side by a speeding sedan) that not only scrambled my brain and made it impossible to understand what people were saying to me, but also threw me for such an emotional and behavioral loop that I quit working and started drinking heavily all day, and I almost irreparably screwed up my life — were it not for the presence of people around me who cared about me and were willing to take all my b.s. with a grain of salt…. and hope for better times.

But nowadays, this body-wide pain is “digging in” and making itself really noticeable. I try to get my mind off it, I try to think about all the stuff I have to do each day, I try to relax and “breathe into it,” but it’s starting to make me crazy… showing up in the background of my life, interrupting my thought processes, encroaching on my peace of mind, and reminding me of days gone by when there was no escaping this generalized, terribly non-specific pain that seemed like it would never go away. I become so nauseous, when I think about this being here and never giving me a break. I have gone through months and months and years of persistent pain that showed no signs of abating, and when I think back about it, and I remember what it’s like to be there, I start to feel really ill.

Which makes me feel like a wuss. Because I have dealt with this before, and I’m determined to do it again. But with some kinds of pain, it literally feels like it’s never, ever going to end. It messes with your mind. It screws up your brain. Even more than it already is. Add chronic, debilitating pain to a mild traumatic brain injury, mix liberally and spread it out over weeks and months and years, and you’ve got a potent cocktail for being driven to the brink of sanity.

Back in 1988, before I could put two and two together and had the information that tbi — especially car accident head injuries, or whiplash — can cause an onset of pain and aches, I went to all sorts of specialists to determine the nature of my condition. They came up with nothing other than that it might be an autoimmune condition like arthritis, and I needed to just go on meds, reduce my stress, get plenty of rest, and stay out of the sun, in order to get better. I think I completely forgot to tell them about my car accident. I didn’t think it had anything to do with anything, and I can’t recall them ever asking me about it.

I did all the stuff they told me to do to address my pain — AND I spent a lot of time (and money) going to specialists who could tell me not one substantive thing about what I was going through and what I could do about it. 20 years ago, I spent my holiday savings (that was supposed to go to presents) on an expert located half a day’s drive from my home. I took a day off work, corralled a friend to drive me down, and I spent a very unfulfilling day with a gentleman who had a bunch of gizmos and a rich pedigree of education and experience, but who could still do precious little for me. He couldn’t even confirm or deny what was going on with me. I can’t speak for the others in the very long waiting line of decrepit and suffering folks… I hope he could at least help some of them. Or just one. Anything.

He didn’t do much for me, other than to tell me that he couldn’t tell me anything definitive about my condition.

So much for my holiday presents fund. So much for my day out of work. So much for the next three years of my life, which I spent chasing — in vain — a plausible solution for my condition.

I eventually just quit going to specialists, because they would tell me, “Well, we took a lot of blood from you, but we still can’t tell you anything specific about your situation. But here are some drugs to help cut the pain a little bit.”

When those drugs won’t work, they’d give me something else.

When those would work sorta-kinda, but they would tear up my stomach, the docs would give me something to cut the pain.

“What will this do to my stomach? Will it protect it?” I asked.

“No,” they told me, “but you won’t be in so much discomfort.”

“So, let me get this straight… I’m taking meds that are going to eventually eat a hole in my stomach, but this other pill will keep me from feeling it… and eventually I might have a hole in my stomach, but never even feel it?”

“Something like that,” they told me.

After talking with some trusted confidantes and thinking long and hard about how little good these advanced meds had done me — some of the side effects were things like malaise and short-term memory loss and disorientation… at a time when I was doing contract work in a number of different locations and could not afford to forget where I was(!) — I decided to discontinue my medication regimen. I resisted being “non-compliant” with all my might, but I was left with no choice, ultimately. I wasn’t getting better, I was feeling worse. It was impacting my quality of life in pretty scary ways. And I just didn’t have the money to cover all the testing that was required every month, since I was unable to work full-time in a job that gave me health insurance, due to my pain issues.

Ironically, I met someone at that time who was suffering from fibromyalgia — a condition which involves a whole raft of really difficult and distressing discomforts. This person had to sell all their furniture (since they couldn’t sit/lie on it and they needed the money) and go on partial disability. I knew I was in a lot of pain, but their condition was utterly crippling. That great degree they’d earned from a great university… the good job and the cool apartment they had… their whole shootin’ match was in the process of disintegration because of their “fibro” issues.

I did learn a lot about chronic pain, in the relatively short period I knew this person. And I learned — perhaps most importantly — that no matter how bad I may feel like I have it, there is most definitely someone out there who has it a whole lot worse than me… who I may be able to help in some small way.. and who I can probably learn from and gain some knowledge from. I learned alot about chronic pain, at that time. Even if my condition was far less disruptive than theirs, what I learned about stretching and rest and nutrition, was priceless. And I believe it really helped me, when I incorporated it into my life (I quit smoking, started eating right, made a priority of getting ample rest, and I changed shoes, so I’d have better support and less impact when I walked). Even if they were still in terrible pain – and eventually moved across the country in search of a health solution — which they found in Chinese medicine — I was able to adapt my life in ways that eased my pain considerably.

Here I thought I was in the clear… I have been relatively pain-free for over 10 years now, with intermittent flare-ups that come along when I haven’t rested properly, or my eating habits SUCK (not often, but it does happen, now and then). I don’t do much dancing, as my knees can’t take it. And I do sometimes feel it in my elbows and back and hips. But I count myself fortunate, that I haven’t been wracked with agony the way I was from 1988-1992.

Until recently.

Now, I have that sick, sinking feeling that comes from the pain that radiates out from seemingly every nerve in my complaining body, wearing me down, tiring me out… I try not to pay much attention to it. I try not to think about it. Some days I can even forget that it’s there (till I move, of course). But then it rears its ugly head, and I’m back “in the hole” again. Sheesh!

Currently, the pain varies, from day to day. A lot of it is across my lower back, around where the tops of my pelvic bones can be felt. My hips and glutes are tender, too — tho’ moreso when I make contact with something around me. My thighs feel like they have hot knots of burning rope tied tightly around them, and my shoulders and elbows are taking turns giving me twinges and pangs.

My neck is a mass of knotted muscles that complain bitterly when I stretch them. My fingers are stiff and tight — they ache when I flex them, and they complain when I extend them.

My skin feels like it’s being peeled back from my bones, and my clothing is hurting me terribly. The feel of fabric on my wrists makes me crazy — it feels like someone is wrapping a rusty choke chain tightly around my wrists… and twisting. Hard. I normally push/roll my sleeves up to my elbows, because this sensitivity is nothing new. I’ve had it since I was a kid — along with pain on the tops of my thighs and behind my knees. But these days, the pressure of the fabric on my elbows is really bothering me, so I have to put up with the chafing of the fabric on my wrists.

I’m sure this isn’t sounding really great to you, right now, but I have to tell you what it’s like, so I can report back about what I’m doing — so you can see how well I am able to bounce back.  It’s all about the bounce, baby!

Here’s what I’m planning to do:

Try Arnica — a homeopathic remedy that’s recommended in some places for muscle aches. I’ve used it topically for bruises and achey muscles, and I picked up some little pills to take. I’m to dissove 4 pills under my tongue, 4 times a day.

Take hot showers — this always helps me. I’m bringing a towel to work, because they have showers here, and I may need to warm up.

Get plenty of sleep — don’t rush out of the house, first thing in the morning, but do some work at home. Make sure I have plenty of time to sleep.

Cut out the caffeine — Ouch! But what choice do I have at this point? I need to cut back, anyway — the 3-5 cups I’ve been drinking each day over the past week may have something to do with my pain and my difficulty sleeping.

Pray — to whomever is listening… they got my butt out of some serious trouble in the past, so I’m pretty sure someone out there is listening. Even if they aren’t, I’ll feel better.

I suspect that this pain stuff is leftover stress from the long Thanksgiving holiday I was just on. That’s what I’m hoping, anyway. With any luck, good rest and reducing stress will help me get back to some semblance of okay-ness.

TBI Benefit #27 – An increased refund from the IRS

I got a surprising letter today – actually it came yesterday, but I was napping and resting most of the day, so someone in my household brought the mail in, opened it up, and left it for me on the kitchen counter. Lo and behold, the refund I’d calculated for my 2007 taxes (I filed for an extension and did an estimate, which was conservative — I took all the deductions I could legally take, according to TurboTax, and along the way, when I found some other deductions I was pretty sure I could take, but wasn’t 100% certain, I just didn’t include them. Now the IRS is telling me that they owe me a bigger refund — probably by a couple hundred dollars, since I don’t have my tax returns in front of me.

You don’t hear that every day!

My strategy of claiming less deductions than I suspected I was owed paid off… for now. I actually found some other earnings that I’d completely missed when I filed my estimated taxes, so my refund may actually be lower, but the habit of being more conservative and less hasty worked out for me. Playing it safe, with the understanding that I could be completely wrong in my math, soothes me and gives me something to fall back on. In any case, my thinking about things tends to get fuzzy and I tend to lose my train of thought, so I don’t dwell too intensely on tax anxiety.

I guess my attitude towards taxes is very different from most folks’ — I believe in paying them and paying my fair share. Yes, there are a lot of places my tax monies go that I don’t agree with, but all in all, the tax burden here is far less than in many European countries, PLUS I get a whole lot more freedom here, than anywhere else, so I figure it all evens out. I pay my way. TBI or no, I pay my way.

I like my roads paved and plowed. I like having elected officials. I like the fact that children of poor people have access to milk and cheese and other WIC resources. I’m not one to judge others for “gaming the system” — too many people do it in too many ways for me to get started on that, and it just confuses me. Our governmental system, say what you will, makes it possible for us to live in an amazing country that people are literally dying to get into.

Yes, I pay my taxes.

Paying taxes for me, is actually an important symbolic thing. Sure, I slip up sometimes and have to file for extensions. And sometimes I’ve messed up and even missed the extension deadline. But I do pay up, because being able to participate and contribute to this country is not something I take for granted. I’m a very different person from most folks, and my abilities are varied and my disabilities are often hidden, so the times when I can participate as a “normal” person… pitch in and help out… do my fair share… help make a difference, in however small a way… well, I take that opportunity.

I think a lot of “neurotypical” people take things for granted that mean so much to so many of us who are on the margins — by chance, trick of fate, or horrible accident. I think people tend to take for granted the ability to go out and get a job, the ability to participate in casual conversations, the ability to meet other people and be active in their communities. I think that a lot of regular people just assume that things are done a certain way — you get up in the morning, shower, dress, go off to work, put in your hours, then come home, pay some bills, watch some television, and go to bed… and do it all again, the next day. On the weekends, there are sports games and activities… movies and get-togethers… travel and leisure pastimes that many, many other people are doing… take the boat out on the lake… go skiing or surfing or skateboarding or sailing or hiking or play a ballgame of some kind.

But for someone like me with a history of tbi’s, none of those things are foregone conclusions, and they rarely go as smoothly as regular think they do (or should).

Getting up in the morning can be a challenge, as I’m rarely fully rested, and I tend to wake up either too early (most of the time), or too late. Showering can be a complicated thing, as I often can’t keep track if I’ve soaped up and rinsed off, shampooed my hair, or how long I’ve been under the water. And my lightheadedness and vertigo can make just standing in the shower a really nerve-wracking exercise.

Dressing for work can set me off, because I tend to forget what I’ve worn earlier in the week, and unless I have my clothing all lined up in chronological order, I can easily end up wearing the same thing twice in two days. Plus, if I’m really out of it, with vertigo or sensory issues, I can walk around for most of the morning with my shirt buttoned all wrong or my fly open. (I once went through a whole animated job interview, standing at a whiteboard, sketching out possible solutions to problems posed to me… with my fly open… which is NOT the kind of impression I wanted to make! I still got the job, but jeez, how embarrassing!)

Going to work has its own share of hazards, as bright sunlight is hard for me to handle, and even with sunglasses on, the shifting contrasts of light and shadows play tricks on my eyes. And when I’m tired, there’s always the hazard of road rage… or misjudging a situation. One morning, not long ago, when I was tired and angry while driving to work, I almost ran in to someone who wasn’t obeying the right-of-way rules — just because I refused (on principle) to budge. They were driving right into my path, but I had the right of way, so I motored on like a bull-headed idiot, and I almost got hit — just because “I was in the right” and they weren’t following the rules. On principle, I was correct and I had every right to drive through. But principle won’t pay for car repairs, and I only have one car I can reliably drive to work, so “standing my ground” was a really dumb thing to do. Plus, thinking back, if they had hit me, considering the place that I was in, that morning, I probably would have gotten in a fist fight with them, and I might very well have been arrested.  I was in a really bad place, and I consider myself (and the other person) to have been literally spared by divine grace. If it were up to me, I would have landed in really hot water!

At work, depending on my state of mind and body, I can either have good days or bad days. But it often takes a lot of effort for me to function at a “normal” level. Nobody I work with knows I’ve had TBI’s, and I’m not about to tell them. I hold my own and I do my piece, but it’s a real chore sometimes, just to get going. I have massive issues with initiating, with concentrating, with following through. I have huge interpersonal issues that I do a pretty good job of keeping quiet about — things like rage and hostility and anger and mood swings. On the surface, I try to stay impassive, but under the surface, it’s often a seething swirl of confusion and mixed emotions that are as high as they are varied.

Heading home in the evening, after a long day, I just try to listen to the radio and keep chilled out. I have to work harder at paying attention to traffic when I’m headed home, so that keeps my mind off interpersonal aggressions and whatnot.

At home in the evenings, I’m just so wiped out, so often, I can’t even look at anything that needs to be handled. I’m so exhausted… it’s all I can do, to eat supper and flop down in front of a movie. Now and then, I’ll manage to do things I’m supposed to do, but they often get pushed off till the weekends.

I have to say, in th past, I tended to just push through and not give myself a break and just ignore the fact that I was exhausted all the time. I didn’t pay any attention to myself, and I didn’t take care of myself. I didn’t like the fact that I was tired all the time, so I refused to admit it, and I just pushed through with doing whatever I felt needed to be done.

That was fine for my productivity, but the net result was that I was an impossible person to live with. I was unresponsive, most of the time, moody and volatile to the people closest to me, non-communicative and prone to temper outbursts and meltdowns, and the kind of person whose intense volatility made everyone around me walk on eggshells all day. Yes, I appeared to be productive. Yes, I was getting things done. But I was just a machine — a shell of a person whose only solace was that I was making good money and keeping up appearances. Inside, though, I was wracked with pain and sorrow and exhaustion and hurt and anger and rage and confusion.

Now, I think know I’m much better off. I’m less “productive,” and it takes me forever to get things done or process ideas and conversation, but I’m now communicating with the people who live with me far more than I did in decades… I’m now sleeping more and taking care of myself better than I ever did… and I’m actually aware of what’s going on around me, which is more than I can say for the person I was, just three years ago.

Weekends… well, I won’t even go into them. Mine are very low-key, for the most part, and I do so poorly with crowds and frenetic activity, most popular activities (like the ones I mentioned above) do NOT appeal to me. I spend most of my time gearing up to do basic things – like take the trash to the dump or go food shopping or go to the library or clean something. I spend a lot of time spacing out and not doing much of anything. And by the time Sunday night comes around, I often feel pretty deficient about not having gotten much done.

Daily life for someone with a TBI is often far from simple, and it’s often anything but straightforward. Sometimes it takes a monumental effort, to just approximate “normal.” I accept that as part of my life… just something I need to deal with… and I try not to dwell on it too much, lest it demoralize me and hold me back.

Given all the “normal” things that tend to be so complicated and difficult for me, if there’s something relatively simple and straightforward I can do to participate and contribute to the common good — like pay taxes — I’ll gladly do it.

It’s a small price to pay to be part of something as amazing as the United States of America.