Life – the best therapy of all

I’ve been checking my stats, lately, and they’ve really taken a nosedive. From 2,555 on a peak day a few weeks back, to 67 yesterday.  I’m not sure why my stats peaked over 2,000 several days in a row. A fluke, I guess. A heady one, too.

Anyway, I was getting a little bummed out about the drop, but then I looked at the weather outside and realized that it’s probably a really good sign, that people are not reading this blog. Chances are, they’re out and about, living their lives, experiencing spring, and really getting into life. That’s a good thing. In fact the fewer people who read this — who spend less and less time noodling over all this bla-bla-bla — the better the indication may be that they’re out living their lives.

And so should I. Over the past several years, I’ve spent altogether too much time inside. I’ve spent too much time being turned around. I’ve spent too much time doing… nothing. Because doing something was confusing, frightening, frustrating, and exasperating for me, and being involved in life as a regular human being was, frankly, too much for me. I’ve invested a fair amount of time, over the course of my life, trying to figure out what was “up” with me. I’ve filled countless notebooks with my journal thoughts — the other day, I just unearthed another 6 notebooks I’d put in the bottom of a drawer. I’ve written and written and written some more about what my experiences were, all the time missing some of the most central, core issues — my cognitive/behavioral problems, my physical issues, etc. And I thought I was doing myself some good, but in fact, I was doing the opposite — slowing my progress and stunting my recovery by refusing to engage with them on a practical, everyday level.

Now, it’s all very well and good for me to have some level of self-awareness.  It’s all very well and good to grasp the inner workings of my psyche. And it’s a good idea for me to be learning about my brain and how it works. But in the end, life is waiting. I can’t sit around in my house, hiding from the rest of the world. I can’t sit around contemplating my belly button for weeks, months, years on end. Well, I suppose I could, but what would be the point? 😉 I need to take what I learn inside my head, inside my journals, inside my house, and translate it all into a life outside, a life beyond, a life engaged in… life.

Because like it or not, life has a way of rehabbing us. It has a way of teaching us what we need to learn, even when we’re not paying attention. It has a way of refining us and adjusting us and remaking us, a million times over in the course of a lifetime. And when I don’t fully get involved in my own life, I miss a lot of chances to see where life is taking me — and enjoy the ride in the process.

It’s true, I do have a whole raft of issues I need to deal with each day. But don’t we all? Just ’cause my issues have showed up somewhat abruptly over the years, and they’ve thrown a wrench in my works, doesn’t mean I have to let them stop me. Plenty of people have woes and troubles and issues, and I am one of the lucky ones who has real information about what the nature of my troubles are, and I have the drive and desire to do something about them. I will do something about them, too. I AM doing something about them. I have to. I can’t sit around and wait for the insurance company to approve my request for assistance, and I can’t keep spending countless hours looking for who can help me in a timely manner. It takes me forever to do really basic things, like get on with my day. What time do I have to chase my way through a medical and insurance system that doesn’t see me on its radar, unless I go out of my way to get in their face 24/7? Like I have nothing better to do with my time, than navigate that maze that may lead nowhere, anyway?

I mean, come on… Whoever came up with this system clearly has no life of their own that they value beyond words. Else they wouldn’t expect others to sink countless hours of precious life force in hassling their way through it all.

So, I”m kind of doing a “sour grapes” thing here, telling myself that I don’t really need or want cognitive rehabilitation or occupational/speech therapy, since it seems so out of reach. But in a way, I’m also simply prioritizing my efforts — do I..

  • sink the time and energy and hope and optimism into a woefully inadequate and bureaucratic system that’s seemingly designed to discourage me from seeking help in the first place, turning my schedule upside-down and wearing myself out for the questionable benefit of meeting with someone with whom I may or may not be able to communicate, and who may or may not be able to help me,

or do I

  • tend to my own issues on my own, in my own way, on my own time, learning everything I can about how my brain works and what my core issues are, and how I can possibly address them with certain modifications, using my life as a great laboratory where I’m the one who designs the tests and experiments and therapies, based on what I know about myself and what I want to accomplish in the world?

Some might say I’m walking an iffy line, taking matters into my own hands, but what’s the alternative? Sit around immobilized by my difficulties? Hide in the house and never go out, ’cause I’m not sure what will happen? Keep avoiding my issues and covering them up, never confronting them head-on? That’s just not an option for me.

I do know I have certain issues I need to address. They’re all right there on my self-assessment forms — verbal aggressiveness, temper flares, emotional volatility, chronic pain, confusion, difficulty communicating, trouble sleeping, light sensitivity, sound sensitivity, possible seizures (the jury’s still out on that one, but if certain experiences I’ve had since childhood have been seizures, it would explain a whole lot), trouble reading and concentrating and learning… the list goes on. And each and every one of these things gets in my way, in one way or another, in the course of each day, so I have to deal with them.

Even if I can’t get help from another live person.

So, it’s DIY rehab time. Just because I can’t seem to connect with the right kind of trained professionals or afford to pay for their services, doesn’t mean I have to go without rehab. There are books out there I can read. And I have my self-assessments I can do on a regular basis to track my progress. I have my standards and my ideals I hold up as goals. And I can monitor my daily experiences to see how well I’m achieving those goals.

It’s a daily practice, this. And little by little, I make progress. I slowly acclimate myself to the things that make daily life difficult for me — things like textures and sensations that distract me and bother me, which I need to just get over. I also find out where I can’t expect to change my experience — when I’m overtired, it’s pretty pointless to try to acclimate my eyes to bright sunlight, because my brain is too tired to know what to do with it. I find the places where I can reasonably expect to toughen myself up, and I identify the areas where I’d best steer clear of irritants. It’s a daily process, a part of my everyday life, and it’s probably going to be this way for the rest of my born days.

And that’s fine with me. Because in the end, at least I have some understanding of where I’m at, and I can see from my self-assessments how I’m doing with it all. And all this examination and active involvement in my life actually gives me more of a connection with my own experience, and it adds meaning to it all. I have to be more involved in my own experience, and it’s actually a benefit to me.

Now, even if I hadn’t had all those MTBIs over the years, I’d probably still be into this. Because I’m fond of making sense of it all — even the senseless stuff. Having head injuries has NOT been “the best thing that ever happened to me”. It has sucked. Big time. But in the end, the practices that my little brain require in order to just get on with it, do have a deeper benefit and meaning, than pure functionality. In the end, there is depth and breadth and wonder to it all.

There is mystery in the mechanics. And that’s what keeps me interested, as well as occupied.

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An answer right under my nose

Crazy me… Here I sit in my study, periodically looking up at my calendar, now and then, to remind myself what the date is… I have a “zen art” calendar that has pictures and sayings on it, and I have tended to contemplate those sayings to help keep me on track. But in the past month, for some strange reason, I haven’t looked that closely at the saying on my calendar.

It is:

So whatever you do, just do it, without expecting anyone’s help. Don’t spoil your effort by seeking for shelter. Protect yourself and grow upright to the sky; that is all.

Yeah, that.

Just the answer I’ve needed over the past months, as I’ve been struggling with my brain’s limitations. Hidden disabilities… Invisible problems… Issues that I never had to worry about before… Difficulties others do not know I have and don’t expect me to have… Falling behind and forgetting to keep on top of myself and my activities and my state of mind and heart and soul, not to mention body… I’ve hassled and hassled over a lot of stuff, especially as it’s become more and more apparent to me.

I’ve been getting some help from folks along the way who supported me the best way they knew how — by offering me their sympathies and lending me their ear. And it’s helped to know my difficulties were not only in my head, and that someone else could recognize them and offer me encouragement — as well as correction.

But I had a revelation while I was out working in my yard this morning. I was raking up deadfall from the winter, spreading organic fertilizer (it’s dried chicken manure, but ‘organic fertilizer’ sounds so much more glamorous) on my grass, and uncovering the shoots and leaves of tiny plants looking for the sun, and it occurred to me that something was shifting with me. Something was changing. Along with spring. Along with this new job I have. Along with all the changes going on in the world. Something in me had shifted.

Suddenly, I felt ready to fight on.

Maybe it was watching HBO’s special PACQUIAO/HATTON 24/7, last night, which follows two boxers training and living their lives, leading up to their boxing match next month that reminded me what I fighter I really am. Maybe it was seeing the “old dawgs” who had been fighters and were now trainers, who were living their lives just as they were, pugilistic damage notwithstanding. Maybe it was watching the training, seeing the fighters and all the others around them going through the motions of preparing for the face-off.

Maybe it was the last three weeks I’ve had on the job, finding out just how much harder I have to work at this learning business. Maybe it was figuring out (yet again) that I need to not focus just on job security, but on employment security, and not let the political scene at work distract me from my skill-building and practice. Maybe it was getting to a point at work, where the folks I work with, side-by-side each day are starting to include me in their conversations. Maybe it was being told that my contract may be up sooner than I expected, so I may have to go out looking for a new job, sooner rather than later.

Maybe it was the unseasonally hot spring morning. And the mayflies swarming me. And the physical labor of raking and lifting and hauling and pushing and wheeling. And the stink of chicken manure dust on my jeans and the sweat streaming down my back. And the realization that I haven’t taken nearly as good care of my house and my yard, as I should in the past few years, and that sustaining a mild TBI that threw me for a loop is no longer a viable excuse, now that I know about it, I know about my issues, and I am able to do something about them.

Maybe it was the acceptance of the fact that I’m probably going to be really, really tired much of the time I’m awake… and reaching a conscious decision to just learn to live with that and not let it stop me. I want to live my life. I want to have a full and complete life, and I’m not going to get that lying in bed. I am usually fatigued. Even if I do take two-hour naps on my days I’m at home, I am once again fatigued in a matter of hours after I wake up. That’s just how it is. Of course, I need to not endanger myself in the process and end up asleep at the wheel or convulsing with stress/exhaustion-induced seizures, but underlying fatigue is something I’ll likely just have to live with, the rest of my born days.

The headaches and general body pains and joint issues and ringing in my ears will likely be with me the rest of my born days, too. Nobody I’ve talked to has been able to figure them out or give me anything to ease them, and I just don’t have time to accommodate modern medicine’s enthusiastic cluelessness and get on with my life. None of my doctors have time for me. They literally don’t. They won’t take more than 20-30 minutes talking to me, and they sure as heck aren’t going to invest more time in understanding my underlying condition(s) from a wholistic standpoint. That’s not their thing, and I can no sooner expect them to change their ways, than I can expect the deer to stop eating my shrubbery towards the end of a deeply harsh winter.

I’m perfectly capable of functioning, even if I’m exhausted. And have a blazing headache. And creak and groan with every movement. And am having trouble keeping my balance. And can barely hear what’s going on around me for the whining roar in my ers. Heck, I’ve been doing it for years — and a lot longer than since my fall in 2004. I’ve been dog-tired, hounded by auditory static, and wracked by pain and for years. And yet I fight on.

Yes, I fight on. It’s what I do. It’s who I am. It’s what I’m about. I have friends who are all into peace and love, and that’s fine. I value their friendship, and they’re good people. But I’m a fighter. And while peace and love are wonderful, I’m not the kind of person who lets the absence of peace and love just stop me. If I did, I wouldn’t be where I am today. And I wouldn’t have been out today, working on my yard and my house on my day off work. I might have been out and about, but I would have been working on something that was the property of someone else. And probably feeling pretty sorry for myself, too.

Working up a sweat today, I realized that in the past several weeks — especially in the past few days — I’ve cycled around again to a point where I am looking less and less for sympathy regarding my condition; less and less, I am seeking assistance from others. Less and less, I’m asking my partner to pick up slack for me. Less and less, I’m looking to my co-workers to cut me slack. Less and less, I’m expecting my job to be secure and my work situation to be ideal. Less and less, I am in need of perfection — or accommodation, in order to succeed.

More and more, I’m looking more within for what I need. More and more, I am starting to look within for my own resources to see where and how I can help myself. More and more, I’m “giving up” on the medical establishment in a fairly good-natured way, allowing them their limitations, while not letting them hold me back or get me down. More and more, I’m just buckling down and doing the job in front of me, and it feels pretty good.

Now, on and off for about a year, I’ve been on a kind of quest to find out what issues I have and figure out what they mean to me. It’s been disconcerting and upsetting and unsettling to find out that in some ways I’m a lot worse off than I ever guessed. And it’s put me in a more vulnerable place than I care to be. I’ve been learning to reach out and ask for help. I’m also learning to see where and when I actually need help. That might not seem like such a huge deal, but for me it is.

But I have to say that trying to get others to help me is a bit of a losing proposition for me. I have a heck of a time articulating what I need, and frankly, I’d rather do a lot of things myself, than look to others. I have a hard time not only figuring out what I need from others, but also telling them what that is. And then I have an even harder time making sure they get it right. It’s just not where my skills lie.

And seeking for shelter in the face of adversity is also not in my nature. The “shelter” that others offer me is all too often not suited to me — it treats me like a victim, a hapless individual who has been acted-upon, rather than someone who acts upon my world. I have tried to find shelter with friends and therapists and family members and co-workers for much of the past year, and it’s just not working anymore. Not anymore.

So, I’m sorta kinda giving up on that. Doing for myself is really my first nature, and I need to get back to that. Blazing a trail through the jungles of my life is also innately me, and I need to get back to doing that with gusto. Yes, I have sustained multiple mild traumatic brain injuries over the course of my life. Yes, my difficulties have wreaked havoc with a lot of aspects of my life. Yes, things that others find really easy are very difficult for me, and things that others find difficult are quite easy for me. I’m at odds with the world. Always have been, most likely always will be.

And I’m okay with it. It’s just who I am. And I’ve been separated from that truth about myself for too long.

Now, I’m doing something about that. I’m getting back to just being who and what I am. I’m getting back to doing by just doing, rather than noodling everything through, up-down-left-right-inside-out, and mucking it all up in the process. I’m getting back to being okay in some ways and not-okay in others, and allowing that to be what is. I’m getting back to doing what I do, exactly the way I do it, and just letting myself be.

So whatever I do, I’ll just do it, without expecting anyone’s help. I won’t spoil my effort by seeking for shelter. I’ll protect myself and grow upright to the sky; that is all.

Yeah, that.

EEG and MRI are both normal!

Woo hoo!

I had a visit with my new neuro on Monday, and they tell me that my EEG and MRI both read as NORMAL.

There is no sign of a brain tumor.

There is no sign of MS.

There is no sign of degenerative disease.

I’m way symmetrical and looking good.

At last, I’ve got some actual testing and numbers to show for all this. Enough of the guesswork — I’ve got plenty of notes and detailed observations about my life, but no doctor apparently has the time or inclination to sort through them all.

Plus, with my over-the-top attention to detail and fixation on things that are experientially important (but probably medically insignificant), who knows if anything I’ve recorded is even any use to them at all?

God, I love minutiae. But it doesn’t love me 😉

Anyway, I’m trying really hard to stay positive through all this. I think that part of me would have liked to see at least a little bit of “variation” on my test results, so I have concrete proof that something unusual is “up” with me.

But this is actually one of the things that makes TBI such a conundrum for folks — both medical doctors and people who experience it. Your test results can come back looking great, your CAT scan, your MRI, and your EEG can all come back normal. But there are real issues hidden under the surface that emerge over time and with varying degrees of difficulty.

And those issues can look like seizures or mental illness or ADD or OCD or some of the other “alphabet” conditions that are swimming around out there.

Or, worst of all, they can be interpreted as a lack of will, being a “bad seed”, being “sinful”, or old-fashioned “character defects” that have little or nothing to do with character and have everything to do with the brain not behaving as it should.

And it can make you crazy. Personally, I wouldn’t be surprised to learn that mental illness can emerge as a result of the stress and strain of dealing with TBI… with or without knowing it.

Well, I would love to write more… and I really want to. But I’ve got to get ready for work and stop at the bank to close the business bank account I opened back before I realized that I wasn’t nearly as capable as I thought I was, and my MBTI was propelling me forward in life, fueled by anxiety, drive, aggression, and a deep-seated need to prove to myself and the world that I was really doing very well… when in fact, I wasn’t.

I know now that the complicated tasks involved with running a business are well beyond my broken brain. I may be able to get back some of my functionality with some speech/occupational therapy, but that’s a ways off in the futur. Right now, it’s time for me to let go of that unrealistic drive and work with the limitations I have. In a way, it’s a huge relief. There are plenty of other ways I can prove my self-worth to myself and the world that don’t involve adminstrative paperwork and filing quarterly taxes 😉

Note: This was cross-posted at Daily Strength

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

Thanks

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!

Peace
BB