At last, an MRI…

Good news on the neurologist front… finally! I had an initial visit with a new neuro who will actually listen to me. I guess three’s the charm. The first two I went to, seemed to have a lot invested in just dismissing my issues or making them out to be just stress-related, but this doc actually sat and listened to me list out my issues.

Or maybe I was just better prepared this time. I know I was a lot less nervous, this time around, and that probably helped. And I’ve gotten more accustomed to talking to doctors, since that first visit nearly a year ago. But this doc was actually interested in what I had to say, which was pretty amazing. And they let me use my notes.

We actually managed to cover a lot of territory in the hour we spent together, and by the time the visit was up, I had an appointment for an MRI this weekend, a call in to the EEG lab for another appointment in a couple of weeks, and I had a third follow-up appointment scheduled for late next month.

Getting the right help makes all the difference, I say.

And having the right insurance does, too.

If I’d known, a year or two ago, what I know now, I would have done the following differently:

Two years ago, I would have checked around with friends about different kinds of insurance, and I would have changed my carrier when I had the chance. I would have NOT gone with the company I’ve been with for over 10 years, which is fine if you’re healthy, but notorious for declining to cover out-of-the-ordinary things, like neuropsychological evaluations and neurological testing. I would have gone with another plan that is not nearly as stingy with adequate coverage and doesn’t treat you like a moocher for just wanting to stay alive.

A year ago, I would have been more aggressive about finding out which doctors really are in my hospital’s network, and I would have insisted on seeing them, no matter what my PCP’s receptionist told me about them not being in “the network”. God, but this has been a huge problem with me, and I still come across it — being told that I can’t see so-and-so, because they’re “not in the network” that’s covered by my health plan, when they really are.  See, since healthcare has become all consolidated, lots of hospitals have teamed up to form networks of healthcare providers. And if I need to find a specialist but there’s not one at my hospital, I need to find one who is in the wider network. The thing is, my hospital is really territorial about keeping patients within their own “walls” and keeping us from seeing people outside this hospital, even if they don’t have the kinds of specialists I need. So, whenever I have said to my PCP, “I need a referral to —–,” they have typically responded, “We have doctors like that here!”

The thing is, they don’t. For head injury, it can be very tricky, finding the right neuro. Some neuros are in bed with insurance companies and they focus on proving that people really aren’t injured all that badly, so the insurance company won’t have to cover their treatment. And others just don’t get the whole head injury thing. It’s very puzzling that professionally trained medically “qualified” doctors — especially neurologists — can’t get their heads around the idea that brain injuries (even mild ones) can carry serious cognitive-behavioral consequences that can wreck the life of even a “recovered” brain injury survivor… and that these injuries need to be constructively addressed for the sake of human dignity and basic functionality. Clearly, there’s a realy need for some substantive education, there. Either that, or the people saying, “Oh, those brain injured people will be just fine,” have sustained brain injuries, themselves, and that’s what they tell themselves to avoid the pain and tribulations of confronting their own limitations. Who can say?

Anyway, getting back to the referral thing, when I would tell my doc, “No, I need to see a TBI specialist, and this is the person I need to see,” (having done my homework and asked around), and they pushed back and told me that I had to stay inside “their network” I didn’t realize that their network actually includes a bunch of different hospitals in the greater metro area, and some of the hospitals are associated with excellent medical schools. It took me about five false starts, before I stumbled upon the information about how wide their network really is. And in the process, I canceled — or just didn’t make — a couple of appointments with neuros who came very highly recommended, but weren’t “in the network” — the immediate one, that is — but really were in the wider associated network.

Yes, it is confusing.

And over the past year, I would have spent a lot more time not taking NO for an answer, when it came to securing proper care for my unique condition. I can’t tell you how many times administrative staffers gave me the runaround, put me off, treated me like there was something wrong with me for wanting to get help for my hidden difficulties. I was just so flabbergasted that anyone would question my right to take care of myself and keep myself from being jobless, homeless, destitute, and dying before I absolutely had to. They couldn’t see my difficulties, because I hid them so very well, and it took a monumental effort to bypass my instinctual tendency to downplay my difficulties and actually say out loud that I needed some help. I hate being treated badly, when I’m in a vulnerable spot, and that’s what happened, time and time again. And it took me about a year to get the hang of talking back to the administrative staffers who were totally snowing me on the “covered network” details and actively denying me access to the help that was most appropriate to me, before I finally acquired the skill to say, “Actually, this specialist IS in your network, so don’t deny me the help I need with a specialist who knows what they’re talking about.”

I also would have challenged those other neuros on their decisions to not order testing for me. The times when the docs said, “I don’t think you need an MRI or an EEG,” I would have said, “Is that you talking, or the insurance company? How much do they pay you to say that?” I would have really given them hell about just brushing me off, and I would have challenged them on their decisions and I would have called them on it.

Apparently, as a friend of mine who used to be in medicine told me the other day, it’s common knowledge that doctors are compensated by insurance companies for not ordering testing like MRIs and EEGs. Yes, docs get a kickback from insurers for not doing their jobs — or a least doing less of their jobs than they ‘have’ to.

This just floors me. I guess I’d have to show up close to dead and hooked up to a machine cranking out objective metrics for clinical analysis, in order to be taken seriously, but you know what, I’m just not going there. I’m a lively, vibrant, awake, engaged human being, and I actually like to live. So why would I subject myself to that sort of experience, just to make some doctor/insurance company happy? It never occurred to me that I was here to do their bidding. Funny, I thought it was the other way around. But then, I have sustained multiple brain injuries, so that probably has impacted my capacity for cynical cognitive shortcuts.

Anyway, now I know these few simple but critical things, and I can now act on that knowledge. Speaking of acting on knowledge, I think I’ll pay a visit to the hospital administration and discuss this disturbing tendency with them. I understand that they are trying to stay solvent, and they have to do what they have to do, to keep their books balanced, but actively discouraging people from seeking out proper care is just unconscionable. And someone needs to be made aware of this. I’m not asking them to send everyone out to other providers for help — just don’t actively prevent those of us with specific, unique, highly specialized conditions from getting the help we really, truly need.

That being said, I’m going to read up on MRI’s now, and prepare myself mentally for my appointment this weekend. I’m actually very excited to be going — I love machines, and the whole magnetic resonance imaging thing gives me a thrill. I don’t care if it’s loud, I don’t care if it takes all day. I’m looking forward to A) getting a close-up look at this machine, and B) actually getting some answers about what’s going on in my head — answers that are NOT based on speculation and extrapolation and deduction, but honest-to-God pictures.

I can’t wait!


Help for a teen-age girl who had a brain injury

I recently received this comment from someone looking to help the daughter of someone they work with.

I was wondering if you could give me some advise a woman I work with has a 13 year old daughter who was shot in the head at the age of 7. She has more or less fully “recovered” physically and mentally as according to her physicians.

Recently she has been getting in trouble at school when she gets stressed out about tests and friends and one of her problems at school is that when she gets stressed she involuntarily scratching her forearms which is alarming school officials . But when the officials approach her she becomes more stressed and scratches her self more.

So I gather you see the problem — the school has ordered my friend (who I will call Stacy) to take her daughter to a psychiatrist and to her PCP. The PCP says that there is nothing physically wrong with her so he can’t do any thing. The psychiatrist wants to medicate but is unsure what the side affects will be as seeing that she has had severe brain trauma and suggested Stacy to contact her neurologist; which she is doing but it takes awhile to get an appointment.

While they are waiting for the neurologist appointment I suggested getting her daughter involved in a support group with others who are going thru the same kind of emotional and psychological healing that she is going thru so she doesn’t feel alone and this is where I’m drawing a blank can you or can any one else get me in contact with a support group that may meet this girls needs if you can

Bless you


I’m worried for Stacy also, I think she needs some one to talk to who is going thru what she is.

And here is my (slightly modified) response:

Hi Mel –

Thanks so much for writing and thanks for helping Stacy!

It sounds like Stacy’s daughter is using (negative) sensation as a way to calm herself down. This is not uncommon — some folks with seizure disorders will do it to stop/interrupt their meltdowns — they hit their heads or they hurt themselves in some way. Other folks who are overwhelmed will use pain to focus their thinking. They will scratch or hit themselves, bang their heads, or do something else to “get themselves back into the present”.

It could also be that she’s using it as a way to get people to back off of her — I have been known to do some kind of bizarre things — unconsciously and consciously — that caused people to back off of me. Things like twitching and behaving strangely, that made people look at me strangely, but got them to stop coming at me so hard. I didn’t WANT to act like a freak, but I found that my involuntary reflexes had the (negative) benefit of putting some distance between myself and the person who was yelling at me, so it actually helped in a way. Additional Note: I’m not saying Stacy’s daughter is intentionally doing bizarre things — I’m just saying I can relate, and the negative reactions I myself have displayed, have contributed to my own behavior and social issues, over the years.

Also, with me, my tbi’s have slowed down my reaction time, so when I have gotten into trouble with authorities in the past, and I haven’t reacted as quickly as they wanted, they acted like I was intentionally defying them, and they came at me all the harder. I wasn’t deliberately being bad, I was just “slower on the uptake” and they mis-interpreted my response as defiance. That may be happening with Stacy’s daughter, and if she’s like me, the increased attention feeds my confusion and I get even more overloaded — A Real Problem, which Stacy’s daughter may be having.

It also could be that — like me, when I was a kid — Stacy’s daughter is (mis)interpreting the school officials’ attention and concern as being in trouble and she thinks she’s being punished or disciplined, which — if she’s like me — just adds to the overwhelm. When they approach her, the school officials need to say explicitly that she is NOT in trouble. They are trying to help her. They may think she knows, but with tbi, it’s never safe to assume anything. Now, if the school officials ARE treating her like she’s in trouble, that’s another issue — a problem with the officials, themselves.

For dealing with sensory overload… Other people with sensory integration issues will do things like rub a coarse surface, tap a rhythm, hum, or do some other action which brings a single point of focus to their attention. It’s called “stimming” or “self-stimulation” and there are many different kinds that people do in different ways. If you Google “stimming” you may find something useful.

Additional Note: Stimming is often used by folks who are autistic or have some other developmental delay — I AM NOT saying Stacy’s daughter has become autistic as a result of her head injury, only that understanding stimming behaviors (as they are used by folks on the autistic spectrum), may help Stacy understand her daughter’s need to scratch her forearms.

I have been known to hurt myself (slightly) to “get out of” a downward slide into a meltdown or when I feel like I just can’t handle all the outside stimuli coming in. Before I knew about how even a mild TBI can affect the brain, I used to bang my head when I was too overwhelmed to function. (Note: since I learned more about tbi, I’ve stopped that behavior — I’ve got all the head injury I can handle, thank you very much.) I have also hit myself, grabbed my forearms really hard and squeezed long and hard enough to bruise myself, I have punched myself, and I have done other things to get a little pain into my system to clear my head. I have never severely injured myself — like cut myself or banged my hand in a drawer or something extreme like that. I just needed a little bit of pain to chill myself out and stop the chaos in my head. I have used sports in the past to create “managed pain” in a positive way — I would push myself really, really hard in practices and competitions, to the point where I was in real physical distress. But then I was able to chill, and life went on.

I’m not an expert in this, but I believe it’s because the pain triggers endorphines (and other stress hormones/adrenaline) which can help clear the mind and help someone get a single point of focus back, when they’re being bombarded with stimuli that they cannot sort out. (Interestingly, this ties in with the research I’m presently doing about how people (unconsciously) create stress and really difficult situations to help themselves function better, when they’re totally overwhelmed.) From personal experience, I can say that there’s nothing like a little pain, sometimes, to help me focus. NOTE: I am NOT advocating self-injury as a coping mechanism, I’m just observing that — on a very limited scale — self-administered pain/stress has helped me cope throughout my life. And in fact, I still use it, now and then.

Anyway, to avoid real injury and help myself focus, I use other techniques that are less stigmatized — more like stimming than self-injury. I usually have a rolled-up paper napkin or towel in one of my pockets that I carry around with me to rub and clench in my fist, when I’m feeling overwhelmed. A rolled-up napkin really works, because it’s coarse, and it fits in my hand, so I can carry it around without people noticing it. I find it very soothing. Also, I do things like rub the seam of my jeans, tap out rhythms (working on a computer keyboard is very soothing for me), and press my thumbnail into the sides of my fingers or palm. I do these things secretly, so no one will see, because if/when they do notice, they become worried and agitated, and it makes the situation worse for me.

For Stacy’s daughter, I would strongly recommend regular exercise, like getting involved in sports. I had real sensory issues and I was a total wreck, when I was a kid. Bit when I got to high school, I started getting involved in organized sports, and that made all the difference. But I couldn’t do every sport — team sports like basketball and softball and field hockey were too chaotic for me, so I ran cross country and track. I did individual sports as part of a team. If I hadn’t been so afraid of water, I would have gone out for the swim team, but I had a lot of trouble coordinating my breathing with motion when I swam, and I was (rightfully so) afraid of drowning.

If Stacy’s daughter is not athletic, I would really encourage her to do some sort of rigorous physical activity that she can do alone or with a small group. But find something physical to do, that lets her really work out her anxiety and channel all that energy. With each successive head injury I’ve had (8+), I’ve often noticed a sudden surge in my physical energy — and I felt more blocked, like I didn’t know what to do with it. That’s been a real problem over the years. But if I can find something really physically demanding to do, I’m usually able to get myself back on track.

If Stacy’s daughter can find something to do that is safe, as well as physically challenging, and not terribly expensive (running cross country and track are about the cheapest sports you can participate in), I really think it could help. And being in organized sports in school was great for me, because it gave me structure and guidance from coaches, as well as well-defined rules to play by — very important for me, after those injuries and concussions.

Now, if she cannot under any circumstances participate in sports, she may benefit from developing other (hidden) stimming techniques — like carrying a “worry stone” with her — a rough stone or some other texture that will keep her attention focused on something other than her confrontation and/or overwhelm. Or like me, carrying a rolled-up napkin to squeeze and rub, when things get a little ‘tight’. If she can be shown other ways she can dissipate the stress that don’t attract a lot of attention, that could help.

Above all, I would recommend that someone work with her in a non-judgmental way so she can develop other coping techniques. Like an occupational therapist. Since she was obviously head-injured by a gunshot wound, she must have medical records which show she is a tbi survivor, so she may be able to get help that insurance will pay for. Rather than sending her to a shrink or medicating her or treating her like she’s mentally ill, if someone can just explain to her that her brain is not processing information the same way that other people’s do, and it’s getting turned around (no fault of hers — it’s a result of the injury), and then work with her to constructively and positively deal with her unique situation, I think that could really help. Again, I’m not a trained professional in this, but as a multiple tbi survivor with sensory issues, I know it would have really helped me, when I was a kid.

As for Stacy, I would recommend that she spend some time reading about tbi online — check some of the links on my blog and learn about it. Even though her daughter has appeared to recover physically and mentally, she will likely have a bunch of issues that she needs to work through — many of which may look like “bad behavior” but are really neurological. Also, the young lady’s age tells me that because she’s going though puberty, her hormones are changing, and that can alter your neurological experience. Women with seizure disorders are known to experience changes in seizure activity which are directly related to their hormonal condition. Stacy may wish to keep a log about her daughter’s monthly cycles so she can track any kinds of behavior changes around the time of her ovulation/menstruation. That way, she can discuss it with a neurologist, and/or help her daughter prepare for times that may be tougher, due to hormonal fluctuations, and use that information to really be pro-active and common-sense about these seeming inexplicable behaviors.

I would recommend, also, that you give Stacy a copy of the self-assessment form(s) I have available on my blog, so she can see what kinds of symptoms can come with TBI. It could be that her daughter is having more problems than anyone realizes – but because of cultural bias, people think that her daughter is just being badly behaved. Or that Stacy is being a “bad mom”. I can’t tell you how many people were really hard on my parents — especially my mom — because they thought their bad parenting was responsible for my behavior. It wasn’t my parents — it was my tbi’s that caused me do do the things I did!

The more Stacy knows about tbi, the better. And her daughter’s school officials should be educated on it, as well. If nothing else, Stacy should make sure they know about her daughter’s brain injury, so they can respond appropriately and work constructively to develop positive approaches that don’t stress out the young lady. Stacy should NOT be afraid to tell them her daughter was brain injured. If she educates herself, she can advocate more effectively for her daughter.

Oh, AND — THIS IS REALLY IMPORTANT!!! if Stacy goes to a neurologist, she should make sure they know about traumatic brain injury. Not all neurologists do. I went to one who specialized in carpal tunnel and multiple sclerosis — not really helpful with tbi, I can tell you! Her local Brain Injury Association should be able to point her in the direction of a neuro with tbi experience.

Stacy may also find support through her local Brain Injury Association. Please tell her not to be afraid of the “brain injury” stigma — there are plenty of people who have had one. The association will probably have support groups she can attend, for survivors’ family members. Her daughter may be able to find support, also. On the surface, it may look like her daughter is all better, but the brain is mysterious thing. And especially since she’s going into full-blown puberty, she may find her “neurological landscape” changing, because her body and her hormones are changing, too. So, she’s going to need new and different help for her tbi, which will affect her in new ways as she matures.

Anyway, I hope that Stacy’s daughter can find other ways to relieve her stress, other than publicly injuring herself. I hope that Stacy can learn more about her daughter’s condition in a constructive and positive way. I hope that her daughter’s school can find ways to deal effectively with this young lady. And I hope you find more ways to help Stacy. It’s wonderful that you’re reaching out like this, and Stacy is lucky to have you as a friend!


Common sense for quality psychotherapy

It seems so obvious to me. Or maybe it’s just me. I just got done reading Eve LaPlante’s book Seized, about temporal lobe epilepsy (TLE). It’s a fascinating book, even for folks who don’t have a vested interest in the specifics of epilepsy (or seizure disorders, for those who are a little faint of heart about the topic). I have relatives who have (seldom discussed) seizure disorders, some of whom have distinctly unique personalities that are very similar to what LaPlante talks about with regard to Geschwind’s Syndrome — a set of personality characteristics that, while controversial, are commonly found among folks with TLE.

Anyway, the book is a fascinating read for anyone who is interested in how the brain interacts with the body and personality. It covers all sorts of ground that probably is taboo in the scientific/medical community, but since LaPlante is a writer, not a scientist dependent upon institutional funds for research and professional survival, she can write what she pleases. She intimates about controversies that surround TLE within the scientific/medical community, and hearing her talk about all these doctors with radically opposing opinions gives me hope, on my own side, because I don’t feel quite so alone or quite so crazy, having all these conflicted impressions and opinions of the doctors I encounter.

My favorite part of the book is the last chapter, where she talks about the intersection of body and brain. She advocates something that makes total sense to me, and which I’ve long felt would make for better medicine and better psychotherapy — training therapists in basic neurology, so that they don’t end up treating conditions which cannot be fixed with talk therapy, but they also don’t miss doing the work of helping their clients live with the burdens of neurological issues.

Amen to that, sister! I’m telling you, it would have made my life a whole lot easier, if someone along the way had insisted that I have a real neurological workup done — top to bottom, front to back, beginning to end — before I commenced with my therapy. Now, don’t get me wrong. I really dig my therapist. They have a great way about them, and I look forward to meeting with them each week, even if the terrain we’re covering is dark and stormy. But the more I find out about TBI and how it affects people’s lives, and the more I think about how my own TBI’s have impacted my own experience and shaded it in certain ways, the more I realize that not addressing the neurological aspects of my condition leaves a huge, gaping hole in the efficacy of my psychotherapeutic treatment.

In Seized, LaPlante talks about how in some cases of psychiatry, patients are sent out for a battery of imaging tests to rule out any organic bases for their issues. Makes sense to me. In fact, I think that I had that in the back of my mind, when I selected this therapist, who actually has a medical background — albeit short-lived, as they got out of the psychiatric nursing business before too terribly long. I believe that a part of me has always known there is something structurally “unique” about my makeup that causes me to experience life in a much more extreme, much more convoluted, much more confusing way than others appear to experience it. I mean, how many times do I have to get left in the dust, metaphorically speaking, while others are having these long, involved conversations, or the movie I’m watching takes off on intricate tangents, before it starts to sink in that I’m not processing information as quickly as other people? Not long, really.

Of course, it hasn’t helped that I’ve learned to mask my slowed processing time by “cueing” off other people and just kind of going along with what they’re doing, agreeing with them ’cause it seems like the thing to do, not ’cause I necessarily want to. My coping strategies have actually worked against me, in many ways, as I’ve gradually come to believe that I was getting everything that was going on around me, when all I was really doing, was doing a damned good imitation of getting what was going on around me. It’s no easy task, to admit this, now. It really isn’t. I mean, how humiliating, to have to cop to the fact that you’re, well, slow… In some ways, anyway.

But what helps even less, is working with someone who is convinced that — absent some verifiable data that I process information slower than most people — what I really need, is to just stop being so hard on myself and boost my self-confidence by feeding myself a constant string of affirmations. I have sat there in sessions and admitted that I was having trouble following what was going on around me, only to be told by the trained professional sitting across from me that, No, that wasn’t true at all. I was just being too hard on myself, too exacting, and everybody has trouble processing information, now and then, so I shouldn’t make an issue of it.

While I appreciate their attempt to make me feel better (and presumably foil some impending suicide attempt or other form of self-injury lurking in the hind-parts of my brain), I have to say that in my case, I’d rather be factual and turn in less rosy numbers, than delude myself any more about my cognitive capacity. It just doesn’t help, when I’m trying to do a realistic assessment of what I can and cannot (safely and prudently) do with my life, if one of the people I rely on for objective information is busy further obfuscating my true situation — all in the name of making me feel better.

Trust me, it doesn’t make me feel better to delude myself. It doesn’t make me feel better, to spin fairy tales and fish yarns about how fabulous I am, when a big chunk of my objective mind is questing for the truth about my capabilities. It doesn’t make me feel better to overstep my bounds and overreach my capabilities — in front of others and in work situations where there’s a lot on the line. It doesn’t make me feel better to realize — when it’s too late to stop myself or fix what I’ve broken — that I’ve once again screwed up, because I bit off more than I could cognitively chew.

What does make me feel better, is knowing precisely where I stand, cognitively speaking, so I can manage to it. If I know that my processing speed is slower, that I have trouble absorbing spoken words, that I get meanings turned around, that I confabulate and confuse not only nouns in sentences but verbs as well, and that I’m completely, wholly, entirely, and blissfully unaware that I’ve mucked up this language-based learning… well, that gives me something to take to the bank.

As in, it tells me that project management is probably NOT the route I should take in my career. It tells me that heavily verbal work, predominantly spoken work, work that depends on my understanding exactly what I’m told at a given time and not losing track of what I heard 10 minutes ago, is NOT the kind of work I will thrive in. It tells me that I should avoid that sort of career change and not get my heart set on moving into management anytime soon. It tells me that — as I’ve known for many, many years, but just now got objective confirmation — I do best in work that is very visual, very immediate, very binary, very technical. I do best working with machines that can “forgive” my muck-ups and allow me to screw up over and over and over again — in ways that people never can/could/will/would. It tells me that my instincts were utterly correct, all those years ago, when I went into web development, and it tells me that although I do love to write, it’s probably best that I stick with coding to make my living and let my writing be more something I do to talk about my life, rather than document mission-critical systems.

As hard as it is to know that my brain is broken in certain ways, it’s invaluable, as well. Because even if there are parts of my wiring that are totally hosed, there are other parts that have overcompensated so enthusiastically, that there is no one — but no one — who is my equal in my areas of expertise. I’ve been called “the best in the business” by more than one co-worker, when it comes to building out code. I’ve been praised and lauded and paid lots and lots of money, because I am literally able to recreate in code the very same image that I’m shown in Photoshop. I am so good at it — and this is objectively speaking, not boasting (a habit I detest) — that I have at times been unable to tell which image on my computer screen was the starting Photoshop comp and which was the completed web page I created. AND I’ve been able to recreate the experience across multiple browsers, which — if you know browsers — is no small feat.

So, in some ways, while I’m incredibly dense, in other ways I have these gifts which add a sublime transcendence to my daily life that makes all the pain and suffering well worth it.

I think that’s what my therapist doesn’t understand. They may be trying to take the sting out of the pain I’m in, but they don’t seem to grasp that the pain is real, and the sting is real, and it’s very important for me to be well aware of the sting, of the pain. If I don’t know that I’m prone to turning words around and turning positives in sentences into negatives, as well as confusing subjects and objects in statements — who did what to whom — then I run the risk of taking up a line of work that relies on me being 100% accurate with my language and interpretation of others’ language. Once upon a time, I did technical writing, and a part of me has thought seriously about returning to it. But the fact of the matter is, I’ve had a bunch of head injuries since my last bona fide tech writing gig, and each one has probably disposed me a little (a lot?) less to that line of work.

So I need to step away from that option.

To avoid creating more pain for myself, on down the line, without knowing it.

Let me tell you, it’s bad enough having to deal with the fallout of a turned-around life… deal with the consequences of poor choices, the residue of numerous traumas, the burden of mis-steps, and injuries… all those injuries… But what’s even worse, is not identifying the real reason that many of them happened — not understanding the limitations I have that contributed to them, and will continue to contribute to my poor choice-making and mis-steps and traumatic outcomes, unless I identify them and come to terms with them.

I can patch up the holes in my leaky boat as much as I like. And I can bail all the water out of my dinghy from dusk till dawn. But if I keep rowing around in rocky shoals in the middle of a moonless night, what can I expect, but to keep knocking holes in the bottom of my boat?

That’s what I’m trying to do — find out where the rocks are, where the shoals are. So I can steer my boat in a different direction. And if I can’t seem to get out of the shoals, maybe I should just jump overboard and swim for shore and take up walking on solid ground.

That is to say, if it turns out — as it seems to be — that my language-based-learning oriented brain functions are not as fully functional as they could/should be, for someone with my level of brightness ) had I mentioned I’m in the 99th percentile? 😉 ), due to all those brain injuries over the years, then it’s probably a pretty safe bet that I should seek out work that is NOT primarily language-based-learning oriented. Yes, it’s sad that someone with a vocabulary in the 99th percentile and an ability to connect two disparate ideas in the 98th percentile, should be so prone to screw up fundamental components of sentences… that someone with my love of language should be ill-suited to making a living off the thing I love so much. But at the same time, there are other things I do extremely well that can provide the level of challenge and fulfillment I need — not to mention a good deal more money than writing — that do not require that I get nouns and verbs and subjects and objects just right.

It doesn’t take a lot of verbal acumen and accuracy, to look at two pictures and tell if they match. It doesn’t require a high level of linguistic accuracy to create properly coded applications. It doesn’t require a sticky short-term memory to tell if a web app functions properly or not. In the binary world I have instinctively gravitated to, I have immediate, simple, straightforward feedback from machines that do not look at me strangely or call me names or make me feel like an idiot, if I get things wrong, the first 2, 3, 10 times.

If I jump from the proverbial dinghy of writing-for-hire (especially technical writing or systems documentation or some other sort of high-accuracy type writing), and wade onto the shore of straight-ahead programming, and I turn my back on the shoals of my language-based learning disabilities, well, then, I’m so much the better for it.

And I have not lost a thing — other than the risk of making an ass of myself, screwing up a project, making myself less employable, and setting back my career and future prospects through my own ignorance and/or unwillingness to squarely face my own limitations.

Plus, if you think about it, I haven’t actually lost anything, by not being able to be gainfully employed as a tech writer or editor or some other sort of language professional. Fact of the matter is, I love to write, and I love to do it on my own terms, in my own way, without having someone to answer to. I have this blog, I have my journals, I have plenty of outlets for my writing, that don’t rely on me being 100% accurate according to someone else’s standards. I can write about my life, because there’s no one outside dictating to me, that I can screw up. I can write about my experiences in great detail, because being there and living it is a very different thing than hearing it from someone else. I can really get down to the nitty gritty of my own body of work, editing my own words and making sure they’re in line with what I want them to say, rather than being tied into some other outside influence that I may or may not be able to satisfy.

In fact, if anything, being forced to look to non-verbal ways of making a living actually widens my world. It sends me into areas I’d never dare to venture, if I could just fall back on my writing to get me by. It forces me to reach beyond myself and find out what else I can do, other than the standard stuff that everyone assumed I’d do — become a writer, or an editor, or some other sort of literary-type person. It impels me to find other ways to express myself and make my way in the world, and it pulls me out of myself to see what else is possible for myself, my brain, my talents, my gifts.

It’s hard to let go of my belief that I’ve got everything all straight in my head. But it’s also very liberating and challenging and, in some ways, invigorating to realize that there is yet more to me, that I must discover. And this at age 43, when a lot of my peers are just starting to settle into the rut they’ll occupy till they depart this mortal coil. It’s hard, yes, to come to grips with my difficulties. But it’s tremendously humanizing, as well. And what more could I ask from life, than a wholeheartedly humanizing experience?

So, contrary to what my therapist might have to say… contrary to what the can-do coaches of the world may think… contrary to what the you-can-do-it-if-you-just-put-your-mind-to-it cheerleaders of the world may cry from the rooftops… I’m much better off admitting my shortcomings and facing my acquired limits, than soldiering on, oblivious to what’s really going on with me.  Believe you me, I don’t want to be this way. I didn’t ask to be this way. I never, in a million years, would have wished for or expected this type of language-based deficit to rear its ugly head. But there it is, warts and all. I’m better off seeing it for what it is and getting on with my life.

In the end, the book is not yet closed on what all I can accomplish in this world. And I’ll feel much better about myself, and I’ll stand a better chance of having a healthy, balanced life, if the person I’m cheering on and praising and parading around for all to see actually exists.

Of danger-seeking and head injury

Here’s a great post about a new book by Richard Hammond, On the Edge, which is about the British television presenter’s near-fatal crash in a jet-powered dragster in 2006.

I’m not sure I’m going to read the book, myself, as I’m just now savoring the triumph of having finished a library book I checked out two months ago, which is still days overdue. I had expected it to take me a week to finish, but I just polished it off, this morning. Since my fall in 2004, I’ve had tremendous difficulties sustaining my attention over lengths of books. Articles I can handle. Abstracts are my friends. Full-length books that have lots of detail, not so much.

Anyway, the post brings together two of my pet topics — risk-taking/danger-seeking behavior and tbi. How they can feed each other… the love of risk can put you in real danger of head injury… and head injuries can cause you to make choices that put you at risk of further harm.

I’m still noodling away at A Perilous Relief, and once I finish it, I may check out the book. Until then, though, I’m savoring my ability to finish the book I started two months ago.

What a difference a year makes…

Well, it’s been a year, since I started this blog. It’s been a little over a year since I first came to terms with the fact that my psychological/cognitive/behavioral/emotional issues can be traced back, in no small part, to the array of head injuries I’ve sustained over the years. In a way, it was a relief for me to realize it. It was a relief for me to realize that the way that I was had a reason. That the way that I am can be explained. That I’m not the only one who struggles with this, and that I’m not the only one with the whole array of otherwise confounding issues that I have a really hard time explaining to others.

Thinking back, knowing now what I know, I’m amazed I didn’t put two and two together sooner. Then again, I had no reason to. In fact, I had plenty of reasons NOT to put it all together. This type of injury does a great job of hiding itself away. It’s the kind of injury nobody wants to have, not many people want to acknowledge, and not many people want to talk about — unless they have one. And even the people who have had TBI’s are not always able to discuss their situation clearly. Because the very part of us that grasps concepts and explores them and initiates discussion, is the part that’s broken.

Broken brain, indeed.

But at the same time, let’s not forget the amazing resilience of this organ atop our shoulders. As Norman Doidge amply illustrated in his great 2007 book The Brain That Changes Itself (which was the first book that made it safe for me to consider that I had neurological challenges and really has credit for helping me to objectively and intimately explore my issues), the human brain can — and does — alter itself, modify its processes, remap its pathways, in countless, subtle ways, so that the body it lives in can continue to function and participate in the world that feeds it.

When I started this blog, it was my intention to not only talk about my life as a high-functioning, long-term multiple mild tbi survivor, but to also talk about my life as a person. As someone who is more than the sum total of their individual parts. As a person whose mind and spirit remain remarkably intact, in spite of the injuries my brain has experienced. I wanted very much to show the difference between the brain and the mind — the difference between the organ itself and that mysterious, even mystical, part of the self that reasons and directs and drives and experiences and emotes and instigates and reacts and loves and, well, lives.

I wanted to show that even if you have gotten hit on the head, been knocked out by a fall or a blast, taken a hard hit and recovered more slowly — and very differently — than expected (or desired), or you’ve wrecked your car or crashed your bike or been thrown 50 feet by an impact, you still have value as a human being, and there’s literally no telling just how much of yourself you can get back — or how much of yourself my may discover for the first time.

I wanted to put the everyday life of an mtbi survivor out there, as best I could, so people like me — who are often isolated and confused and frustrated and in some ways utterly beyond help — can have a place to see their experiences mirrored, to hear their calls echoed, to have written proof that there is someone else out there who is dealing with this very challenging, often troubling, sometimes rewarding condition in a very present, very active way.

And I had hoped that maybe, perhaps, some psychotherapists and/or doctors and/or teachers and/or folks in law enforcement might stop by to take a look at this online journal to familiarize themselves a little bit more with what it’s like to be on the inside of a broken brain. Maybe, just maybe, they might be able to learn something from reading these words that they either are too proud to ask about, or they didn’t realize they needed to learn.

It’s all but impossible to know if I’ve succeeded at any of this. I’ve gotten comments back from folks about how reading my words has helped them, or that I’ve provided a great service to others. But the blogosphere is in pretty short supply when it comes to completed feedback loops, so I just have to trust that whatever I’m putting out there is of some benefit to someone, somewhere. The only real gauge I have of my contribution is thinking whether or not it would have helped me, years before, when I was really struggling with the after-effects of my accidents/falls/other injuries, and didn’t even know where to look for help.

I figure, if I feel like what I’m writing would have helped me, it may just help someone else out there. I know that, as of this date, over 8,800 page views have taken place. I’ve approved 103 comments. Akismet has protected me from 7,560 spam comments, and the most views I’ve gotten on any one day in the last year has been 125. I’m not the most popular blogger out there, and the vast majority of people out there have no clue that this blog exists. But I continue to post, doing my best when I can. And I hold out hope that this may be doing someone out there some good.

I know it’s helping me.

Because blogging, quite frankly, is an answer to my prayers. For many years, as a kid, and then as a young adult, I dreamed of becoming a published author. I told myself I was an artist and I was a rebel… never mind that my art often had more to do with relieving the pressures of living with undiagnosed neurological issues, than contributing to the outside world. I dreamed of putting my words out there for others to read, even if it meant not making a lot of money or garnering much fame. Money is nice, but fame I’ve rarely craved — and then, only in the eyes of those I hold in the deepest respect.

As my TBI-related difficulties soured and destroyed one publishing contact after another, one professional relationship after another, I slowly relinquished my dreams of being published, and I became convinced that I was pariah to the literary world. In many ways, I was. I mean, I had some really excellent opportunities to be published, but I could never follow through or get myself straightened out well enough to make good on them. I was beyond help. Literally. And everyone who dealt with me probably thought I had deep-seated emotional/psychological issues — with good reason.

Well, today I know better, even if they don’t. Today I know better than ever where I stand, and the parts that I don’t know enough about, I’m finding out about. And today, I can sit here in my “infirmary” — a makeshift bedroom away from the rest of the household, filled with liquids and pills and tissues and steam form the humidifier — and write words that will be seen. Because I’m online. Because I have something to say. Because others find me through search engine searches and WordPress tags and links that people email to them. I can look at my dashboard and see who’s looking for what information — PTSD, TBI, temper, employment issues, pain, emotional turmoil, overcoming tbi, mental illness and brain injury, and more — and I can speak to what they are looking for. From my own experience. From my own life. From my own corner of this big, wide, incredible world where everyone is pretty much grasping for answers, about now.  I can surf tags to find out who’s talking about what I’m talking about. I can surf other blogs to see what others are saying. I am anything but alone, in these days of WordPress interconnectedness, and for once in my life, I can know that I am joined with others, through even the finest of gossamer threads. But I am joined.

One of the interesting things about my TBI experiences and after-effects
is now it both connects me with the world and separates me from it. On the one hand, like Kara Swanson says over at her blog, a brain injury can teach you a whole lot about compassion and help you extend it to people who you’d otherwise dismiss, or diss. It can humanize you (as my partner says it has me, since I really came to terms with it over the past year), it can make you more approachable in some ways, and it can make you have much more appreciation for the parts of your life that function well, in the face of so much that doesn’t.

On the other hand, it makes interacting directly with the rest of the world pretty difficult at times. For example, I keep my identity secret in this space, because I don’t have the resources to navigate the intense interpersonal demands that personal familiarity makes on me. There’s something in my brain that just short-circuits, when there’s too much in put. I also don’t do much reaching out to others (which probably limits my readership) because I run out of steam and I fail to fully sustain my connections with other people. I end up looking/sounding a bit flighty, as well I am, because I not only lose my place with where I’m at in the contacts I’ve made with people (who answered whose email last? who commented on my blog post that I haven’t yet responded to?), but I also tend to forget about them, period. There’s a reason my blogroll is somewhat limited. I forget to update it. And I forget that I need to update it. Social networking is all very well and good, but it requires a level of involvement that I simply cannot sustain. And if I try — which I have, in the past — I just screw it up, one way or another.

Oh, well…

The bottom line is, in this space, I can write. And online, others can find my writing. Perhaps not as many as I would like, but enough to bump up my stats each day. I’ll just keep plugging, try to stay true to my cause, and sustain what level of honest detail I can, along the way. In the end, even if no one ever reads this, it helps me. Tremendously. And that, in itself, is well worth the effort.

Speaking of analgesic stress…

I’ve been fighting off a cold for the past five days. First, it was in my head, then my throat, then it started to move into my chest. I battled it with rest and liquids and lots of tea and vitamins… keeping clear of sugar and “cheap” foods… and I thought it was just running its course. Seriously, today I thought I was over the worst of it. I actually felt energized and rarin’ to go.

But then my significant other pitched a fit and demanded that I go to the doctor, because I was losing my voice. Just to keep peace in the family and put their fears to rest, I went. And lo and behold, not only am I not over my cold, but it has now evolved into sinusitis and bronchitis.


My voice is gone. At least, the low range is. If I talk in a falsetto, I can make myself heard, but who the hell wants to do that? Oh yeah, that goes over really well at the pharmacy, let me tell you. NOT. It’s bad enough I feel run-down and bummed out… but having folks look at me oddly doesn’t improve the situation any.

I started to feel really bad, only after I got to the doctor’s office and everybody looked at me like I was teetering on the brink. I hadn’t honestly noticed it before. Maybe because I was so busy going and going and going, and I didn’t want to feel like crap. Only when they sat me down and started talking to me like a sick person, did I start to feel it. Really.

I guess I’ve been a little distracted, today, after my neuropsych eval follow-up. Finding out that your processing speed is really much slower than it should be — one of the most common after-effects of TBI, the neuropsych assured me — is not much fun. Even if I am bright, I’m still not “computing” as quickly as other people — like 75% of other people. Bummer. Man, oh, man. What a kick in the proverbial balls.

And finding out that the tests that I thought I did well on, I did abysmally awful on, is not much fun, either. I thought I’d circled all those shapes really, really quickly. At least, it was quickly for me… Not so much for the rest of the world — like 60% of them. And that one test I thought I almost aced — turns out, I did so poorly, I was at the bottom 1% of how everyone performs in it. That 1% is nagging at me, the same way that that 99% was elating me. Two ends of the spectrum co-existing… and I had no idea.

Adventures in anosognosia, indeed.

Well, anyway, I am on doctor’s orders to drink plenty of liquids, take certain drugs, and sleep. Go to bed. Cover up. Take an antihistamine that will knock me the heck out. Sounds good to me. I just checked for the possible interactions between all my different pharmaceuticals, and none were found, so I guess I’m good to go. The doc told me I could take them all, but I always like to check to make sure. Sometimes I find things they don’t know about — like how Dilantin can muck with your blood sugar… and here a friend of mine who has sugar problems also has a neuro who was prescribing Dilantin for them…. until they found out about the effect it can have on your blood sugar. Then they stopped. And the neuro changed their tune about the wonders of Dilantin.

But I’m doing it again — pushing myself, and actually starting to feel better. The harder I push myself, sometimes, the better I feel. Which can mask damage that’s being done to my underlying physical systems. That adrenaline, the deliberate focus, the rush from just getting stuff done… it just feels so good! And when I’m feeling bad, it’s just what I crave.

But what my body craves, right now, is rest. So, I’ll show my significant other how to do some of the special chores I usually take care of every night, I’ll take my assortment of pharmaceutical wonders, and I’ll bundle up with the humidifier on HIGH.

With any luck, I”ll be feeling better tomorrow. Without any analgesic stress.

But if it takes a few days to get there, I’m fine with that, too.

Very bright, yes, but in some ways, oh so dense

I just got back from my neuropsych, this p.m., and I’ve come away with other news. Turns out, I may be in the 99th percentile in some ways, but — thanks to my brain injuries over the years — I also score very low in others.

I rank in the 12th percentile when it comes to handling data that are fired at me in quick succession (possibly even lower, if I didn’t figure out a system to overcompensate for my shortcoming on that one test). I’m down around the 34th and 25th percentiles in some respects, and I even ranked in the 1st percentile in one test. My deepest shortcomings are in a very significant area — my ability to store information for short periods of time and work with it.

Plus, my processing speed is slow. That’s a surprise to me, but when I challenged the doctor, they told me that their tests came back conclusively that I wasn’t just being really, really careful. I was actually having trouble. It’s true. When I think back, I recall really struggling with some aspects of what I had thought would be a really simple test. In essence, it was. For others, it would have been easy. For me it was not.

I hate that!

I don’t want to be dim-witted at select times!

I want to be bright ALL THE TIME!!!

I don’t want to be brain damaged!

I don’t want to be impaired!

I don’t want to come up short!

I don’t want to think I’m smarter than I really am –I want to be smart — and I want to be in the high 90’s all across the board! Not 34! Not 25! Not 12! And certainly not 1!

I was pretty stoic when the doctor was telling me these things, but I guess it hadn’t sunk in just yet. Well, now it’s sinking in, and I’m feeling a little nauseous. I really did get scrambled — not once, not twice, but a bunch of times. And the areas where I have the most problems are the ones the doctor says occur most in TBI’s.

It’s very strange. I mean, it’s not like I didn’t know this, but having someone sit across a desk from me and tell me this and prepare a report that says this in official terms, is different. It feels different. It’s one thing, to write about this in a blog. It’s another, to discuss it with someone real, who’s in the same room as me.

I’m not sure what to do with this information.  What does it mean? I’m still a little stunned, now that I think about it. Here, I thought there was basically good news — that there were only a few places I’d been impacted. But HOW I’ve been impacted…

Well, considering that I’m still very bright in some ways, I’ll just have to figure out how to work with this. Work around it. Work through it. And come to accept this part of myself that likes to hide itself away from me.

I’m still fighting off a bad cold/sinus infection from the past four days, so that’s bringing me down a bit, I suppose. So, I guess I’ll sign off now and take it easy for the rest of tonight, give myself some time to digest what I’ve learned, and make a concerted effort to be really easy on myself.

I’ve gotten some good news, but I’ve also gotten some bad news. And I need to be gentle with my bruised ego… very gentle.

A Perilous Relief – Risks I Took that Turned out Well

In 1995, I hated my friggin’ job. I had the odious task of playing a middle-management role in a law firm that was quickly headed downhill. I spent the lion’s share of my time running interference for support staff who were just trying to do their jobs, keeping the insecure and power-hungry administration from running roughshod over them, just for the sake of reminding them who was the boss.

Ironically, it was the kind of job I hadn’t wanted to take. I had sworn for years that I didn’t want to work in the legal profession, having developed a strong distaste for lawyers and hair-splitting as a line of work over a number of years of doing legal secretarial work. But when I relocated to a small city and I needed to find work asap, my legal background enabled me to land a job almost immediately, so I took the position despite my better judgment. (I’ll add more on this sort of professional decision-making later.)

Earlier in my life, I had aspired to being a published author. I had penned many an article and short story and poem, and even two novels, but I wasn’t having any luck getting published on a large scale. So, when the world wide web was picking up speed, I realized that I could publish myself electronically by building a website that featured my writing. I did so, and I loved it. The act of building web pages was such a departure from my workaday administrative world, that it gave me a much-needed reprieve. When I coded pages, I was creating something, not just running interference. And I could see the results immediately.

I built another website. Then another. I started to look at the source code of the pages I was building, and I realized I could code them by hand, instead of with the WYSIWYG editor that was mucking up my display. Long story short, in the space of about a year, studying technical manuals on public transit on the way to work, and practicing my chops on the weekends, I knew how to code well enough to go looking for paid work building websites.

I changed careers. I went from being administrative/middle management, to being a technical producer and engineer. To some, it would seem like a significant change, and it was. Even more significant was the fact that I went from being a salaried employee at one of the region’s top law firms, to being a “temporary” contractor who was paid by the hour and didn’t have full benefits. And I had a household to support.

Ditching full-time permanent employment in favor of hourly independent contractor work is, by modern standards, something of a risk. Some might say it’s a substantial one. I think it was. The world wide web was still young, people hadn’t yet widely embraced email, and there was no guarantee that there was any future at all in building websites. As far as my family was concerned, it was a wild stab in the dark… a pretty risky gamble. But I had a hunch that it was going to be big – and there would be substantial reward waiting for me, if I just hung in there.

Fortunately for me, I was right. And over the course of my professional web development/software engineering years, starting in 1997, I routinely took chances with my work, pushed the envelope of what code could do, embraced new technologies, defied organizational politics, and generally refused to play the games that most corporate climbers did. Due — at least in part — to my brash (some would say rash) eagerness to test limits and get away with it, my income ballooned dramatically. I was one of the few people who would willingly and eagerly take on “impossible” tasks… and deliver. I would wade into a bee’s nest of cranky engineers and pissy managers and emerge with the proverbial honeycomb of a successful implementation. I thought outside the box. I inspired people with my devil-may-care can-do attitude and my code-ninja moxy. I brought home my projects on time and on budget. I was the go-to person if you were in an impossibly tight spot. The company where I worked rewarded me well, even through the tough times after the dot-com bust. Especially through those times. For I was one of the people who could keep a clear, cool head in the face of impending disaster and come up with inventive solutions when all seemed lost.

Thanks to the favor of my employer, I entered the ranks of the world’s top 25%, financially speaking. I was able to buy a great house with a great view in a highly desirable community. I have two cars in the garage and a resume that reads like a best-practices guide for Getting Ahead In Technology.

When it comes to risks I took that turned out well, my gambits in the domain of the world wide web are the most shining examples of just how well things can turn out.

At Risk: My career path and job prospects, health benefits, welfare/survival of my household
Dangers: Unemployment, socio-economic marginalization, domestic uncertainty
Rewards: Higher pay, participation in cutting-edge technologies
Outcome(s): Higher standard of living, solid track record in profession

A Perilous Relief – Table of Contents

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I love my therapist, but…

If they keep hinting around at me being “ADD” one more time, I’m not sure what I’m going to do. Granted, I have documented attentional difficulties. Granted, I do tend to exhibit plenty of symptoms consistent with attentional challenges. But as useful as ADD may be to them, to understand where I am and how I am, there’s something about that diagnosis that feels very incomplete. Not to mention over-simplified.

I’ve been thinking a lot about diagnosis, over the past months. The past year, in fact, as I’ve been in therapy each week and I’ve been on my quest for adequate diagnosis and neuropsychological testing. I frankly cannot wait to hear what people think is really going on with me… expert people, professional people, people with objective metrics to drop me into some category or another.

It’s not that I want to be categorized, in order to understand and value myself. No way. Diagnoses tend to be too broad and over-simplistic, to do me much good, past a certain point. A diagnosis from others is not going to define me as who and what I am, on the inside. But an official diagnosis will enable me to express to others that there is something verifiably “other” about me. I’ll have a word — or words — to give people a short-hand clue about who I am and what challenges I have to deal with on a daily basis. And I might be able to explain my differences to others a little better, if we have a common diagnostic vernacular, as it were.

I just need a commonly agreed-upon vocabulary, in order to talk to others about my situation in a way that they can grasp. If I explain it to them, I’ll fall flat. I know that from experience. The depth and breadth of my difficulties don’t translate well into everyday language, and given my successful coping strategies, who the hell would believe me, anyway? I make it my business to conceal my difficulties. So, I’m in a bind, when I need to admit to them.

But back to my therapist and their love of the ADD diagnosis. They’ve been hinting at it since I started seeing them close to two years ago. They live with someone who is extremely ADD, and they know from personal experience what it’s like to deal with it on a daily basis. The thing is, I’ve met their significant other, and it seemed to me that they had a whole lot more neurological issues going on, than “just” ADD. But how do you tell this to a person who’s invested the past 10+ years of their life relating to someone on the basis of ADD, and doesn’t seem open to other explanations?

Easy… I don’t.

Anyway, I’m looking forward to getting the full report from my neuropsych about what the heck is going on with me, how it impacts me, and what I can possibly do about it. Could be that I need to be on a drug of some kind. Could be that there are other physiological issues I need to address. Or there could be other neurological issues I have to deal with — more testing is coming up later this month, which ironically, I’m really looking forward to.

In order to deal effectively with my therapist, I need to have some sort of “ammunition” in hand about my objectively measured state. Then — and only then — will I feel like I am on solid footing in dealing with their suppositions about my attentional difficulties.

Redemption time at work

Oh, I’ve gone and done it again… and I’ve started out the year on a really crappy foot, at work.

One of the great challenges of living with a TBI is how it not only can play havoc with your emotions, but it also messes with your self-perception and executive function, so you can find yourself saying and doing things that are emotionally over-charged, which you think are totally okay and wholly justified, but which are just plain downright stupid. And they put you in a bad light and make you a real pain in the ass to live — and work — with.

I’ve been pretty sick, the past few days, fighting off a sinus infection that really took hold when I was partying with friends on Saturday and ended up eating and drinking things I had no business eating or drinking. There was no alcohol involved (thank heavens) and there were no drugs. But I overdid it on the carbs, the sugar, the dairy. I made the terrible mistake — which I know way better than to do — of eating several servings of ice cream over the course of two days.

How friggin’ impaired can I be? I know I can’t eat ice cream — my dairy intolerance/allergy and my sensitivity to sugar both combine to literally make me sick, if I eat ice cream. It’s such a bummer! I love ice cream! But it hates my guts. Literally.

Anyway, I overdid it on the food and the ice cream and the sweet drinks, and I stayed up way too late on Saturday and didn’t recuperate enough on Sunday, and by Monday, about 3:30 a.m., I was locked in the throes of a terrible sinus infection that gave me an intensely sore throat and aches and pains and a total feeling of exhausted depletion. I haven’t been that wiped out in a long time, and here I was, really looking forward to being able to get back to work and start the year out right.

But no, I had to binge and overindulge, and eat ice cream.

So, I slept all day Monday, just nursed myself, felt awful, did all the right things, like drinking my nasty-ass cold season tea that’s unspeakably vile, but still helps clear out my cold symptoms, drink plenty of water, sleep, sleep, and sleep some more…

By Tuesday morning, I was feeling better, on the whole, so I went into work a little later. But when I was checking my email first thing in the a.m., there was this really annoying message from the person (I think) I report to (the organizational structure is unclear to me, to this day – note to self: ask my uber-boss about this on Thursday). They were just throwing a bunch of crap at me, that we’d discussed, and I said I wasn’t doing until I got some real answers about what direction we were going in… and they totally screwed the process we had laid down before.

Ack! Now, I’m not the kind of person who lusts after process. But if I’m going to do something and do it right, I need to have some basic information in place about what’s required, what the deadline is, what the expected functionality is, etc. I don’t think it’s too much to ask.

But despite my justification, I hammered out this flaming email in response — and came close to sending it. Then, I took another look at it and took out the “brimstone” sentences, and trimmed it down to the basics. Then I sent it.

Well, I got into work to find that my “toned down” version came across really strident and coarse, and I wasn’t making any friends by sending it, and cc’ing everyone in my group. I overreacted. I can see that now. But until yesterday afternoon, I didn’t fully realize it.

It pissed off my boss-apparent. It put my uber-boss on alert. It made everyone tip-toe around me on eggshells. It did not start out my new year on the right foot.

Basically, the foot ended up in my mouth, and even though I know I was totally justified in sending it and demanding the things I did, I now have to make amends for my rashness and work overtime to re-establish goodwill with my boss-apparent.


Well, anyway, I know how to do that, because I’ve been doing it all my life. I just re-establish contact with this person on neutral terms, make more of an effort to communicate with them, stop bitching about them behind their back, recap everything we discuss in emails, record-record-record, and put together a project plan of my own to follow, so I can know what’s going on, even if they don’t.

This actually works out better for me, in the long run, as I intend to go into more of a project management/lead line of work, rather than being just another code monkey, all my born days. It will give me the chance to see if I’m really cut out for that kind of work, or if I should really just stick with the code monkey trade. It could be that I’m not at all suited for project management/lead work — that I do better with machines. But I need to find out. And this will be a way of doing that. Without needing to change jobs.

Assuming, of course, that they don’t decide to get rid of me. In my last permanent position, an outburst like this sent ripples of horror through my immediate working group, and ended up in my dismissal from the ranks. I don’t want that to happen again, if only for the sake of not having it on my resume.There are only so many bridges I can burn, without ruining my life and my employment prospects.

Anyway, this recent episode was a complete departure from me, in this group. I’m usually the even-keel one, the level-headed one, the stabilizing influence. But yesterday, I was not. Not by a long-shot. It put me in a new light, I’m sure, and I can be thankful that I’ve been able to build up some goodwill while I could keep my head on straight. It really did enlarge others’ perceptions of me, especially my uber-boss, who (till yesterday) has been extremely engaging and encouraging towards me. Yesterday, they were tired and wary — just like me.

So, as uncomfortable as the experience turned out to be, it could have positive results in the long run. That’s what I have to tell myself, each day — that the things that seem to be wrong – oh, so wrong – about me, are actually just additional wrinkles in my personal expression, and while they may seem extreme and troubling to me and portend disaster, I have to remember that there are plenty of other people out there who behave much worse than I do, and get away with it on a regular basis. I can’t be too hard on myself, and I need to remember that just as my brain may tell me what I’m doing is better than it really is… it can also tell me that what I’m doing is much worse than it really is.

In the end, there’s always the chance to make amends — mea culpa — and start again. When I’m back in the office on Thursday, I’ll make a point of it.

In the meantime, let me get started on that project plan…