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.

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Back from the holidays, back to work

Of course, the holidays are really just beginning, but the holiday travel piece is over.

I will not be traveling over the December holidays… it’s just too much energy, too much exertion, and it completely overwhelms me far past the level that I’m comfortable with.

Once upon a time, it was fine and dandy for me to constantly push the envelope… travel throughout November and December… push myself to do-do-do for the holidays, doing all the shopping, all the driving, all the travel, all the social maneuvering… just putting my head down and soldiering through, regardless of the toll it took on me.

No more. This year, I am seriously taking care of myself. I did my family duty for Thanksgiving, and it really tested me in some scary ways. Ways that I don’t care to repeat in another month or so. I was able to get periodic naps in, and (for the most part) I was able to watch what I was eating and doing and saying and thinking, so that I didn’t get too far out ahead of myself. But the few times where I did lose track of what I was doing, how much I was sleeping, what I was eating… I melted down in some sad and sometimes scary ways.

One of the times, I was visiting an old friend who had company drop in to visit for a little while, and the shift to lots of social interaction really threw me off and triggered a major meltdown after they left. I had anticipated — and desperately needed — a quiet evening with this person, just catching up about what’s been going on in my life for last couple of years, but I was unexpectedly thrust into the midst of a lot of very happy, very gregarious people who had no idea how loud they were, and had no comprehension of what the effect of their noise was on my sleep-deprived head. I held it together for the hour or so they were there — I didn’t feel I had the right to chase them away, and I didn’t want to spoil their fun, just because I was having auditory processing issues. But when they left, I just fell apart — tried to hold it together and have a pleasant conversation, but ended up in tears.

Feeling damaged. Feeling deficient. Feeling unfit to be around people. Because I just couldn’t follow what they were saying, I was so tired, so overwhelmed, so unprepared. I hate it when I get like that — it ruins the simplest of times, the happiest of times, and I have a hell of a time dealing with the fact that I’m affected this way.

Fortunately, this friend of mine has seen a wide range of human behavior in the world, and they’re not easily intimidated — especially by me, who they know better than I know myself, in some ways. They have an uncanny ability to discern who is really inside the person they’re interacting with, and when I broke down in mortifying uncontrollable tears and couldn’t talk for half an hour, they let me be, rubbed my back, brought me a glass of water and a blanket to wrap around me, and just let me be, till I got my bearings and could be human again.

The other time I started to lose it, was when I was behind the wheel of my car, which was not good. It was raining and dark, and I was having a hell of a time seeing my way through the night. On top of it, I made some poor choices about how to avoid the parking-lot traffic on the freeway, and I ended up taking long back roads that didn’t have a whole lot of human presence nearby. A little scary… not terribly frightening, but what might have happened is haunting me a little today.

I was okay company in the car, until near the end of the trip, when my traveling companion started to talk to me, and I started to flip out — yelling and saying unkind things and generally being a really difficult person to deal with. It was a really shitty way to end up what was otherwise a mostly okay Thanksgiving, and I really regret having said the things I did. It’s like these words were coming out of my mouth, and I couldn’t stop them. I think the talking got to me — the auditory processing stuff, again.

Thankfully, as I drove through the night being a total asshole, I was able to dimly perceive that I was in no condition to be indulging the rage that was coming up in me… that I was operating on diminished resources, to begin with, and I needed to just shut the hell up, which I did.

The last half hour of the trip was no friggin’ fun, and my outburst(s) made a taxing time even more troubling. But at least I was able to shut up, eventually. And my traveling companion may yet forgive me for saying what I said before I dropped them at their place.

Just one more thing I need to make amends for. Thankfully — and I mean thankfully!!! — I am NOT traveling any more for the next six months, at least, I will not be dealing with family up close and personal for at least another 6-9 months, and I will have plenty of opportunities to clean up my act with regard to the person I roasted the other night.

Plus, I’ll be getting my neuropsych results back in the next month, so I’ll be able to explain myself better… and take steps to:

A) Fix what can be fixed

B) Compensate for what can’t be turned around

C) Avoid like the plague those things that cannot at all be helped

If nothing else, there’s always tomorrow, always another lesson to learn, always another chance to make good on the promise I have, as well as more chances to make up for the parts of me that are not cooperating the way I and/or others want/need them to behave.

Onward and upward…

Thanksgiving anniversary #2 — 2004

I’ve been thinking a lot about the Thanksgiving holiday, lately. It stands to reason, since I really got in touch with the impact that my TBIs have had on me, last year around this time. You wouldn’t think that a history of at least six head traumas (most of which knocked me silly and one of which knocked me out), and a lifetime of cognitive-behavioral issues, a spotty employment history, and a see-saw of a personal financial history would escape detection, but I never put it all together and realized that my car accidents, concussions, falls, and blows to my head could have had a cumulative effect, till last year, this time.

But if you consider that head injury has a way of disguising itself (like alcoholism is a disease that tells you there’s nothing wrong), it’s not entirely unlikely. My cluelessness can be explained.

It wasn’t until I saw the long laundry list of tbi-related cognitive/behavioral/physical issues in one place, and made a realistic and honest assessment of my life history, that I realized there was something really, really wrong. I’ve never received medical treatment for my issues. I never had them even identified — till this past year — as something other than “sinfulness” or “character defects”. It never occurred to me that they might be physiological/neurological in nature. It never occurred to me that I might not be BAD… I have just been INJURED.

Anyway, I’m going to quit feeling like a complete and total idiot, and get on with talking about my fall down the stairs in 2004… the most recent time my life was changed by a head injury…

A day (or 2) after Thanksgiving, 2004, I was getting ready to leave my parents’ house after the holiday. I was standing at the top of the stairs at my parents’ house (very steep staircase, about 20 stairs or so), packing bags and carrying them to the car to head home

I was going to walk down the stairs, when someone called to me from the bedroom. I was standing at the top of the stairs, no bags in hand, my head all over the place with thinking about making the trip back.

I turned to listen to what they were saying and see what they wanted me to do, and my feet just went out from under me. I was in stocking feet, which wasn’t the smartest thing, since the carpeted stairs have always been slippery, and the 20 stairs or so are very steep.

It was so surreal… My feet just went out from under me, and I landed on my back and I felt the back of my head hit hard on the top 3-4 stairs, as I went down. My head just bounced off the top stairs, and it took a few impacts before I realized I was even down, and that I was headed for the ground floor. It all happened so quickly — a split second, it seemed like. I’ve always had fast reflexes, so I had the presence of mind to lift my head up as I tried to stop myself by putting my hands and feet along the walls. But I was moving too fast, and I couldnt’ get a grip. I couldn’t stop my fall, and I ended up sliding down the whole flight.

When I got to the bottom, I was dazed and drew a blank. What had just happened to me? Why was I at the bottom of the stairs? I may have actually been “out” briefly — maybe a few seconds. I don’t recall exactly. I do recall there being a bit of a gap in my thinking at that time — things may not have gone completely black, but they did get very faint and dim. I didn’t immediately know where I was or what had happened to me. I remembered going down… falling… sliding… but I still didn’t know why I was at the bottom of the stairs.

I wasn’t sure if I could move, and someone called to me, as though from a distance. They sounded worried… harried… concerned…

I answered faintly, then I got up and went into the dining room before anyone could come to check on me — I just didn’t want to worry anyone. I also didn’t want anyone pulling on me, while I was trying to get my head together. This has always been my way — to shake off others around me, while I collected myself. To refuse assistance, while I got on my feet. Some people have called it “pride”, but I literally cannot think when someone is all over me, talking to me, interacting with me… and I need to keep my head clear, if I’m going to ensure I’m okay.

I got up and went into the dining room to check myself out. I just sat, dazed, at the dining room table, for a few minutes, catching my breath and trying to get my head clear. Gradually, I realized that my back was hurt. I didn’t really think anything of hitting my head.

Someone came downstairs to check me out, and asked if I’d hit my head. For some reason, I said “No” – I’m not sure if I even realized it at that time, I was really dazed — but I do remember that I didn’t want to worry them, and I didn’t want to have to concern myself with that, because I didn’t trust the nearby hospitals. I was also concerned that the hospital would take actions that I couldn’t defend myself against, because I couldn’t communicate effectively. The last thing I wanted, was to be checked into a hospital I didn’t trust, in an area where I was uncomfortable… and miss work. I just couldn’t take a chance on bad healthcare.

I remember that I was more worried about my back being torn up – it really hurt. It had a big brush burn on it, and I focused on getting that taken care of. I had someone put some cream on it and cover the really raw parts with a bandage.

I recall being somewhat out of it, for the trip home, but I made it back okay. I don’t remember much from the days following, as that was a very busy time of year at work, and there was a lot going on. We were at year-end, and a mammoth project I was working on for the last year, was being launched. Tensions were high, and we all had to be 100% “on” — the last thing I could accommodate at that point, was a head injury. Or any kind of injury at all.

I think that urgency, that determination to not be “substandard” may have driven me in ways that kept me from healing. I didn’t get the kind of rest I needed. I didn’t take care of myself. I ate the wrong foods. I really pushed myself and took on too much. I think this is what happens with head injuries — at the time when we need more help and rest and care than usual, our injured heads tell us the exact opposite: that we don’t need as much rest, that we’re fine, just fine, and that we can do more than we realistically can. And because our injury is hidden, and others tend to hate to think we might be cognitively impaired, our drive is not only accepted, but sometimes rewarded by the very people who are also harmed by our injuries.

After that accident, I started having more trouble at work, relationships fraying and straining, not being able to keep up with my work, constantly feeling like I was falling behind, saying inappropriate (and insubordinate) things  in meetings, and becoming openly hostile and verbally aggressive towards others I worked with.  I just was not myself… people became afraid of me and started avoiding me and started pushing me away, marginalizing (or just outright ignoring me) in meetings and openly playing favorites towards others who were competing with me.

I went from being one of the top go-to people in my line of work, to persona non grata and being told I had to leave the group by July of 2005 (8 months after the fall). I’m surprised I lasted that long, but I think my past “stores” of goodwill that I’d built up over nearly 9 years of dedicated, quality service, spared me immediate repercussions.

When I was told I had to leave the group, highly-placed vice presidents offered to help me find a better position. There were people in positions of power who offered to help me, but my thinking was so fuzzy and my behavior was so erratic, that I couldn’t accept their help. I couldn’t understand the consequences of my problematic actions and behavior, and I decided to just take matters into my own hands — another bad idea, compliments of my head injury. I converted from a full-time employee to a contract technical writer at about 60% of my former pay. And four months later, I left the company permanently.

Thinking back, I can’t say that I miss the high pressure and stress, but if I’d had a clue about what was going on, and if I’d been able to manage myself and my situation better, I might not have had to part with hundreds of thousands of dollars in stock options and nearly a decade of quality recommendations and high-performance job history.

It ended on a very sour note… and it wasn’t until this past year that I realized — fully — that it wasn’t necessarily that “awful” company that was to blame for my crash-and-burn. It was my head injury.

So, this Thanksgiving is quite bittersweet for me — bitter because I now realize just how much I have lost over the course of my life, thanks to my injured brain and the ignorance of people around me and my inability to get the help I needed.

And it’s sweet, because I have a lot of love in my life, I have people around me who accept and support me and realize that I need help with my issues, not judgment for my shortcomings… I have my health, I have my sanity, I have access to a lot of quality information, and even though things are sort of dicey, right now, with my job and money, I have the determination and the stubbornness to hang in there till i figure it all out. I also have professionals who can point me in the right direction — whether in person or online — and even though I do have to overcome a lot of deficits just to function at a ‘normal’ level, I can still do a pretty good impression of a regular person… and buy myself time to figure things out for myself.

I never knew, until a year ago, just how much my head injuries had cost me over the course of more than 40 years. Now I know… now I have information… and I can now get help.

And so I shall.

I don’t give up. I just don’t. And for that persistent quality, that stubbornness, that inborn tenacity that refused to take “no” for an answer… that inner wanderer who wrestles with angels and refuses to let go until i am blessed… for all that, I give thanks.

A reply to a comment that took on a life of its own

I had started to respond to NEDream’s comment and the reply really took off… I’m incredibly tired, these days, but I did want to post this…

NEDream, I hear you… There is a lot I would love to be able to do, but given that I’m coming from a place that’s impaired — and often in ways I don’t even realize — it’s hard to know just what to do. I’d love to be able to go on lecture tours, meet with professional caregivers who know far too little about tbi, consult with best-practices people, and generally contribute to the widening knowledgebase for professionals — the front-line care providers and experts in these extreme health matters. But I tend to run out of steam (my high energy notwithstanding). Plus, I’m dealing with additional health issues that had escaped me as being real problems, also I think in part due to my cognitive issues.

How ironic, after all these years of being beaten up by others for being “less capable” because of injuries and deficits I myself could not detect, now I’m able to detect my deficits and identify my injuries, but the people who would/could help me are totally thrown off by my ability to deal… Catch 22, if ever I heard one. And it makes me absolutely NUTS to think of how much good I (and others) might be able to do others like us — I know I would have benefitted greatly from someone like me crossing my path about 10 years ago!!! — yet the experts and people who are guarding the castle of acute health care are barring us from crossing the threshold because, ironically, we’ve been injured. That’s what it feels like, anyway. I might be totally off-base about this, but whenever I talk to a professional psychologist or neurologist or neuropsychologist, I get the sense that they are looking down their nose at me… even though I hold in my possession a vast amount of experience and knowledge that could probably help them become better practitioners… if only they’d let me help them. I do want to help. But I get the impression, I’m not “allowed”. After all, I am brain-injured 😉

I too am really torn about what to do to help. I think that people like you and I are extremely well-placed for this time in history. Not only do we have access to technologies that put our words in front of total strangers and people who may be looking for information we have, but we also have the kinds of experiences that people used to NEVER (and I mean NEVER) talk about. I should know — I came from that world. And I’ve been dealing with this –crap– complicated situation for most of my 43 years. My family was so ashamed of me, they didn’t understand why I did the things I did, why I couldn’t figure stuff out as quickly as others, why I would say one thing and act like I was totally right, when I was totally wrong… why I couldn’t finish any chores they had me do, and I would always miss some detail — like a corner of the hedge I forgot to trim or a portion of the yard I forgot to mow or the leaves I raked into a pile, but couldn’t manage to haul away to the compost heap. They just didn’t understand, they thought — I guess — that it was God’s will that I suffer like that, and I was just their cross to bear. They were grateful to have other children who didn’t have all the issues I did, but I was always there to remind them that something was amiss… even if they didn’t understand what that something was, or why it was.

Now people are talking about this… and I think that as people look back, they will see that head trauma is much more a part of human experience, than we thought, before. My father-in-law was in WWII (he passed away over 10 years ago), and from the stories I heard about how he was when my spouse was growing up, it sounds like he totally had a TBI — if not several — when he was at war, if not earlier in life. He was always a real fighter — always getting in brawls, beating on other guys and getting beaten on — and the stories I heard about his temper, his violent outbursts, his need for silence at the end of a long day, his sensitivities, his quietness that would suddenly explode, his troubles with drugs and alcohol, and his constant remorse over what he’d done wrong in life… well, it sounds pretty familiar to me, and I suspect that he had sustained TBI’s throughout his life that colored his experience. But back then, when he was active as an adult, men were supposed to be the strong, silent types, not show any emotion, not betray anything about what was going on inside him. I think back now, and I can totally see how he just suffered and suffered and suffered in silence, because he — and everyone else — didn’t understand the nature of his injuries.

But as I was saying — and I’ll finish this thought sooner or later 😉 — now people are talking about TBI and they’re starting to lobby for assistance. They’re starting to raise awareness. They’re advocating and agitating, especially on the internet. Now that we have the web at our disposal, we can get the word out there about our experiences. And even though we may be “pedestrians” and “lay” people, we are still experts in our own experience, and we can share with others what it’s like to live — and live well — with (and in spite of, or even bacause of) our injuries. There’s that whole “wounded healer” paradigm that some therapist friends of mine love to talk about. And when it comes to giving people hope, there’s nothing like hearing from others that they’re in the same boat as you, more or less.

One of the things I really disagree with, in regard to current thinking about TBIs is the concept that “every TBI is different”. That may be true, but I think that some health care providers use it as an excuse to not fully engage with TBI survivors and not explore all the options. I think they also say that to cover their asses, so we don’t get our hopes up and have “unrealistic” expectations of them. I totally agree with the author of “Brain Heal Thyself” (I think that’s they title) who really takes issue with that “ever brain injury is different” attitude. Yes, we are all different. Yes, we all have different injuries. Yes, our brains are all different. But we share common traits with one another — in particular, the part of ourselves that’s been hurt — that can unite us and give us a sense of belonging and community. To impose a sense of isolation and alienation on someone whose most prized physical resource has been damaged, is not only unfair, it also strikes me as being a little cruel. All because doctors don’t want to admit that they don’t have all the answers, and they might actually learn something from us… I know I’m over-simplifying and I’m venting. I’m tired, after a long day of being tired… But I think my complaint has merit.

And I’ve got lots of complaints. (I do vote, after all 😉 ) I’m one of those people who cannot help but think critically… not because I hate everyone and everything (though I have my moments), but because I feel that criticism is one of the highest forms of flattery — if I didn’t care, I wouldn’t bother to criticize. I’d just let people wallow and rot. But I do care. I want to help shed light and explore things that people cannot see or have overlooked. Unfortunately, my combination of injuries and personality conspire to make me look different than how I feel, and I often don’t realize that I’m coming across as rough as I am. That’s why I prefer to write — it gives me a chance to edit before I post what I say. Sometimes I speak/write too quickly and I get in hot water, but that’s just par for the course.

I’ve been writing a lot lately, because I’ve been pretty freaked out by some health stuff that’s come up, and I’m worried. No, I think terrified is a better word for it. I’m sure it will all work out, but given my pathetically limited ability to communicate verbally with doctors, I’m really concerned that I won’t be able to communicate with them, and I won’t get the proper care. It’s not a small thing I’m dealing with — and I need to deal with it — but I’m just not sure how I will be able to do it.

I’ll post more about that later, but right now I need to stay on topic and move this along. A lot of things are coming up with me, so it’s not difficult to move *something*. Ironically, the more fatigued and uptight I am, the more I’m driven to write and create and comment on any- and everything that crosses my path. That, and with Veteran’s Day and thinking about how shafted so many of our brain-injured wounded warriors are being… how alone they can be… how lost and alone they are, without sometimes even knowing WHY… it nudged me into action. For my father-in-law, who was wounded multiple times in Europe, and got sent back, time and time again, to be shot up and patched up and sent back in… For the fallen who gave their lives… For the walking wounded who fall through the cracks… for all of us who have been knocked around in this rough-and-tumble world, and may not always have a fighting chance to recover…

I can’t believe that story about your mom’s friend’s husband’s son… I would like to be all cynical and jaded and not be affected, but I literally cannot believe that this actually happened. Pardon my French, but… Oh, for Chrissakes! Holy f*ing sh*t — WTF!?!?!?!? That just totally freaks me out. A neurologist suggested that the guy remove a *vertebra* to deal with the pain?!?!?! WTF?!?!? I mean, is this what they teach people in med school? I have a relative who’s a freshly minted doctor, and they have very little positive to say about neurologists. They just don’t trust them. And after the stuff I’ve been through with some supposedly very good ones, I have to say I’m starting to agree. Of course, there’s also something to be said for second opinions, and personally, even if I was in horrific pain, I’m not sure I’d have the balls to have one of my vertabrae removed(!). That just sounds so extreme. I guess I’m just a wuss, but, man, oh, man — that’s just HORRIBLE.

Okay, I’ll calm down, now, but I get SO upset when I hear about people’s lives being ruined even more than they already are, because some doctor — who is in a position of trust — gives them BAD information, for whatever reason. It’s all the more upsetting, because I really believe it’s avoidable. There are so many of us walking around with this vast amount of life experience, who could open some eyes — if people (including doctors) would only listen. And the experience we carry around with us can apply on both sides of our issues — both towards informing caregivers and experts about what the deal with us REALLY is… and towards informing the walking wounded that their doctor is NOT God, and they can be wrong about so many things.

I think the medical establishment, as it now stands, needs a good deal of work, not least of which is a good dose of humility and the recognition that something is systemically wrong with the AMA and how it trains its doctors. If there were something I would change, right off the bat, it would be the practice of teaching doctors about the human body by using cadavers. I think the practice of studying a dead corpse to learn about the living body is a BAD IDEA, and it starts you off on the wrong foot. Of course, I’m not a doctor, so who is going to listen to me? I’m an engineer and I make my living from creating solutions based on logic, not mystique and precedence-based assumption and a sleep-deprived sense of entitlement, so I’m probably not the sort of person a medical person will listen to. But it seems to me, if you’re going to treat living people, you need to learn how living beings survive and thrive. Call me crazy…

I know I’m just venting, here, and I’m not being supportive and productive and making a positive contribution, but I just don’t understand this whole dynamic with doctors. I don’t understand why they think they’re all that… why they think they can tell people to remove a vertebra… why they think they can toss around diagnoses (correct or not) and pretend that they are God. I just don’t get it. It seems really dangerous to me. Really dangerous and not very bright. I suspect all that sleep deprivation during their training does something to their thought processes, and the fact that so many of them deal with crises so much… and their limbic systems get whacked… amygdala alerts 24-7 can’t be good for the human system. So I think they may end up getting turned into medical machines of sorts. I’m just thinking out loud, here. I do have tremendous compassion for the folks we turn to for our life-and-death decision-making. And I would never have the nerve to step into that role. It must take a very special kind of person to do it properly. Problem is, I’ve met precious few doctors who I’d trust with my life — I do know a few, and I literally would trust them with my life. But the majority… I just don’t know how our society has gotten to a point where we value human life so little, that we turn our fate over to people whose egos are clearly driving their decision-making, no matter what anyone else has to say about it. “They’re the doctor…” And that’s supposed to be enough?

What can we do about this… indeed? The more I think about it, the more impotent and ineffectual I feel. There are SO MANY PEOPLE SUFFERING, because they cannot get the right information, and when they do get information, they cannot decipher it, and they’re left to their own limited devices… just when they need more help than ever. I fell so deeply for the suffering folks — tbi survivors and family/friends alike — who are struggling with this seemingly insurmountable obstacle, given no hope, told that they have lost just about everything, and whatever is left, they’re going to lose, too. I almost can’t bear the thought of all that suffering — especially in the lives of our returning veterans… and their families, too.

It’s just so hard. And I speak from many years of experience. IT IS HARD!!! It is harder than anyone with a fully functioning brain can imagine. It is harder than anyone who has not been through it can possibly comprehend. TBI — by its very definition — defies comprehension. And it leaves us to fend for ourselves, come what may. Some days, I can’t believe I’m still here. All the bad decisions, the run-ins with cops, the accidents, the screw-ups, the near-misses, the close calls… And all the people I’ve totally pissed off and alienated, who had once been valued allies and friends… Man oh man, am I blessed to still be here and be able to write this! I am so deeply grateful to whatever higher power out there thinks my life is worth saving. I am so profoundly grateful to all the strangers who helped me (or who just resisted the urge to take advantage of me)… the friends who bore with me… the (few) family members managed to love and accept me… the partners who — for however long — put up with me. And the person who has managed to hang in there with me for the past 18 years. I am indeed blessed. And I can’t account for it at all. I mean, when I’m in a bad way, I’m REALLY in a bad way… just impossible to live with… How I still have what I have, is nothing short of a miracle.

Now, I can’t speak for anyone else, but I feel utterly compelled to help. To do something. And my “thing” is writing — detailing my life experience in as much depth and breadth as I can. I don’t care much for fame and fortune — well, fortune would be nice, and I won’t turn away financial contributions to help me dedicate my life to educating people about how to live well in spite of TBI — I just want things to change. I want people to hear about someone who has sustained multiple TBI’s throughout their life and has managed to put together a really, really “normal” sort of existence that nobody — especially not my parents — ever thought I would have. I want people to know that they don’t HAVE to lose it all, just because they have a brain injury, and in some ways, they may even find themselves able to do different things better than ever. It takes a long while for a lot of us. It took a long while for me, to sort through everything. But it can be done. TBI doesn’t have to be a death sentence. And it doesn’t need to mean the end of everything you care about and love to do. Yes, you may need to part with some things that used to mean a lot to you. I lost a bunch of stuff, after my last injury, including my ability to spend time in open spaces, be comfortable around strangers, my love of reading fiction, and a really, really good job. My injury cost me hundreds of thousands of dollars in personal net worth. And I lost a lot of friends along the way. But you know what? I’m still here!!! And I’m still loving my life! I’ve let that old shit go, about how I was so wronged and life is so unfair. Of course I was! Of course it is! No kidding. But I’ll be damned, if I’m going to let that stop  me from living my life.

Seriously, money can be replaced. And every day, I’m finding ways of regaining/restoring the things that mean most to me. I don’t WANT to dread reading stories, anymore, so I’m practicing reading story-driven books, like autobiographies and personal memoirs of people who have overcome things like me. I’m also starting to read fiction online, which I can take in shorter bits and pieces, while I’m at work. I’m coming to terms with the anxiety and fear that’s been driving me all my life, learning new techniques for how to deal with it all — the first part being, just realizing how driven I am by anxiety and fear… I never realized it till this past year, when I really started coming to terms with my TBI’s. And now that I’m aware of it, I can actually do something about it!

I’ve also got new friends who love and accept me for the odd and sometimes bizarre creature I am. Jobs come, jobs go. I’m still breathing, I’m still able to put one foot in front of the other. And as long as I don’t hold myself to unrealistic expectations, including the expectations of others who have some pretty superficial values, and I give myself a break and remember I STILL MATTER AS A HUMAN BEING!!! well… I’m fine.

What we can do to help — and yes, now I’ll finish the thought 😉 — is write all this stuff down. Everything. As much as we can record. Put it out there. Spread the word. Make it possible for people to do the social networking thing with our blogs and do social bookmarking and all that. Do podcasts. Do teleseminars. Do webinars. I, myself, have to really watch my energy, and I have such a hard time dealing with people in person, that I’m pretty much excluded from the public speaker circuit. And I get so turned around when I’m actually talking to another person, at times, that I can’t get my words out, and I sound like a real space-cadet. That’s not who I am, but that’s how I present, a lot of times. So, I recognize my limits, realize what I cannot and should not do… and I do something else. Like blog. The things that I cannot do, I really should not do. But the things that I can do, I can do really, really well. So, I figure out what works, and I just stick with that. I let the other people out there do the things I cannot — like public appearances and YouTube videos and podcasts and whatnot. We all have something to offer, no matter how severe our array of deficits. The trick is finding out what works for you, and doing that as well as you can (without completely exhausting yourself, which I am prone to do).

Very, very cool. Wow — something that actually works. Imagine that… I hope it continues to work for you. By all means, do post info about this here, if you get a chance.

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.

Temper, temper…

I’ve been checking my stats and seeing what search terms people are using to find this blog. “Temper” is a popular one. TBI and temper issues often go hand-in-hand… and for me, it’s been one of the biggest hurdles. I’ve lost jobs and burned bridges over temper outbursts. I’ve gotten into hot water all my life, because of my temper — starting with my parents, who really came down on me very hard for ‘not being able to control myself’.

If they had known that my falls and getting knocked out by that rock didn’t help matters, they might have been nicer to me. But they weren’t. And I was convinced all my life — till a year ago, when I realized that my multiple tbi’s had affected my cognition and behavior — that I was a BAD PERSON who wasn’t entirely fit to be around nice people.

You know what? I wasn’t BAD. I was INJURED.

That doesn’t excuse my behavior, of course, but it explains it. And knowing now that aggression, hostility, rage, temper outbursts, emotional volatility, and impulse control often go hand-in-hand with brain injury — be it mild or moderate or severe — helps me manage myself in ways that keep me and others safe from my outbursts.

So, what do I do about my temper (which has caused me to break many things, lash out, even physically assault people, to the point where I once had a restraining order against me)?

First, I remember that my tbi’s have affected my reasoning and the way my brain reacts to the world around me. I remember that there are mechanisms deep in my brain that react on a very primal level to perceived threats. There’s the amygdala, which is the fight-or-flight switch that seems to work in overdrive with me. And there’s the limbic system, which is about emotion. And then there’s the parts of the brain that control impulse, which are around the area where I got hit in the head (and knocked out briefly) with a rock, when I was eight. People used to believe that when kids’ brains were injured, they recovered better than adults, but now they’ve realized that if you injure a young brain, it affects how it develops for the rest of the child’s life.

So, I try to stay objective, and remember that my brain doesn’t work the way I really want it to.

Next, I try to stimulate my parasympathetic nervous system — the counterpart to the sympathetic nervous system — to chill everything out. The sympathetic nervous system, as I understand it, is the source of the fight-or-flight response that’s making me react so intensely and act out. So, to calm my system down, I need to trigger the parasympathetic system. I’ve been taught that deep breathing causes the lungs to expand, and when they press against the inside of the ribcage, it stimulates the parasympathetic system, so I try to breathe deeply and feel my lungs filling with air and pressing against my rib cage. Also, counting my breaths gets my mind off the turbulence and forces me to focus on something other than what’s pushing me over the edge.

I also rub my neck near the jugular vein — there’s a nerve in there called the vagus nerve that triggers the parasympathetic nervous system. It’s a huge nerve that runs through our whole body — look it up online for more info, as there’s more to it than I can come up with at this point — and one of the treatments for epilepsy to keep people chilled out and reduce danger of seizures, is actually to surgically implant a vagus nerve stimulator in their body. I’m not keen on the idea of having something implanted in me. I’d rather just massage my neck on the right side — but gently, as I’ve heard stories from doctors and nurses about people knocking themselves out by massaging it too hard.

Bottom line: I actively try to stimulate the part of my nervous system that’s built to chill me out. We all have it. We can all use it. And I do.

If this doesn’t work, I try to get my mind off things by doing something. I take a walk. Or I work in my workshop. Or I write something. Or I draw something. It doesn’t have to be perfect, but it needs to be active, and I need to really concentrate while I’m doing it, so I redirect that wild, primal energy/rage/agitation into something productive. Sometimes, I’ll clean my study, which gets to be a total wreck, at times.

I try to get my mind off things that were making me crazy, and do something  positive with my energy.

If all else fails, I remove myself from the situation, if I can, and take a breather. I physically exit the area, and I pull myself together. If I cannot stop the rush of temper with people I do NOT want to hurt (and I really don’t want to hurt anyone), I just walk away and gather myself. I give myself a talking-to. I don’t drive when I’m in that kind of a space, but if I can go into another room and close the door and have some quiet time in a darkened room, I do. I try to stop the cascade before I do/say things I cannot undo or take back.

I try to protect the ones I care about by removing my malfunctioning brain from their presence.

Most of all, I try to not judge myself and be too hard on myself. I’m a long-term multiple mild traumatic brain injury survivor, and the fact that I’m still here means I’ve done something right. I try to learn from my experiences and keep an eye out for things that may cause problems later. I make amends, whenever I can and should. And I do what I can to atone for the things I’ve done that hurt others — without my intending to or wanting to.

I have to remember that I am a good person, but my brain does not work as well as I want it to, and if I had total choice in the matter, I would definitely not do the things that my brain is prompting me to. This is not an excuse for bad behavior. It’s a warning to myself of what I have to pay even more attention to, so I can live the best life possible and, wherever and whenever possible, do no harm to others, but help in any way I can.

Not all of these approaches work 100% all of the time. And I don’t always have the presence of mind to do them when I should. But these things have worked for me and my extreme and volatile temper.

They might work for you, too.

Good luck!