Fasting day today

Every now and then, it’s really good to go without

So, now that I’m exercising again, I’ve had some time to read — while I’m riding the exercise bike, first thing, before lifting or doing resistance exercises. I’ve been combing the Web for material on the benefits of exercise for the brain, and I’m rediscovering a lot of pieces I read a few years back that slipped into the nether regions of my memory. Yes, BDNF (brain-derived neurotrophic factor) is stimulated by exercise. And intermittent fasting can be good for your brain.

I have an easy day today — I’m telecommuting, and my afternoon appointment will probably be cancelled — so I don’t have a lot of energy demands on me, and I can safely get through the day without being in danger from hypoglycemia or not having enough energy to get by. When I’m commuting and I’m on my regular schedule, I need to have all pistons firing, which means I need a steady flow of energy to my brain, so fasting is not possible.

Today, though, I’m good to fast. I’ll drink my water and tea, get some intermittent exercise, and probably take a nap later this afternoon. Pace myself, and let my body take a rest from eating. I won’t fast into the evening. I just need to be without food till about 8:00 tonight, which probably won’t be a problem. I usually don’t eat until after 8:00 anyway. I ate my last snack last night around 10:00 p.m., I think — a natural fruit popsicle. So, a 22 hour fast will do the trick.

I learned about intermittent short-term fasting at the blog Getting Stronger, which discusses hormesis, or making your system stronger by introducing small bits of stress that test your system and increase its capacity for performance. I have tried to fast in the past, but it went poorly — probably because I had issues with behavior and emotional regulation, and my diet was pretty crappy, so I was all set up for hypoglycemia that made me a bear. So, I never did much with fasting after a few little tries.

Intermittent short-term fasting, which is where you go without food for about 20 hours, every now and then (some people do it monthly), actually offers a lot of benefits, without the intense stress and strain of prolonged deprivation. I aspire one day to being able to fast longer than 22 hours, but that may actually never be necessary, as reduced calorie intake is also a proven way to help you be healthier.

Anyway, I have been looking for opportunities to fast, but I’ve either been pretty active, or I have completely forgotten (like over the week between Christmas and New Years) that fasting might be a good idea. So, now I am remembering it, and it looks like this is a really good day to do this thing. And I shall.

I know this may prove challenging later today, when I am looking for my lunch around 11:30 a.m. – that’s when I usually eat. And then there is the afternoon snack that I usually have around 2:30 or so… Doing without them, especially when I am working at home with lots of good, healthy food within easy reach, may be a challenge. But I have to keep in mind that I am doing this for a good reason — and it won’t be forever.

I’ll break my fast tonight, and that will be that.

The big challenge today will be keeping my mind on my work and not getting pulled in a bunch of different directions. I’ll spend some extra time today exercising or sitting and breathing, instead of eating. At times when I am usually having snacks or lunch, I will do a little stretching or sit and count my breaths. This could be a really good way to get that extra meditation time I’ve been wanting.

I’ve felt myself jumping quickly into a state of knee-jerk reactiveness, over the past months, and that has not been good. I can’t just snap over every little thing. I need to be more mindful and also better about managing how I behave with regard to my emotions. I know this is an issue for me. So, sitting and breathing and working on my self-restraint while not eating will be a great opportunity for me.

I just need to keep focused and remember why I am inconveniencing myself — and really celebrate at the end, when I get to eat again. It’s only 11 hours and 16 minutes away 😉

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Everything changes – let’s get past the guilt

Just look around… Seasons change, the world changes, political movements rise like tides – or tsunamis – and people change.

That includes people with traumatic brain injury. When you injure your brain, whether you know it or not, something has changed. Sometimes the change is extreme and immediately noticeable, and sometimes it’s hidden and the changes emerge only after weeks or months, even years. And if that change has been gradual and practically invisible (either because the physical changes evolved over time, or the TBI survivor is not well able to detect those changes on their own), it can be incredibly daunting to understand just what those changes have been, and what you can do about it.

At times, it may seem like nothing  can be done about it. Especially if the changes are gradual and fundamental — personality changes taking place over time in ways that you can’t exactly pinpoint when/where/how it all started. Going from being an even-keeled, easygoing individual… to an anxious, agitated person with a hot temper that will come out over nothing at all just when you least expect it. Going from mellow and easygoing to uptight and raging is a pretty extreme change, and it can look like it’s impossible to ever make it back to mellow.

But things change. People change. I’ve changed an incredible amount, just in the past three years. In the past six years, actually — the first wave of change was a result of my TBI in late 2004. And the second was as a result of my rehab. The first wave of change was unexpected and constantly traumatic in large and small ways. The second wave of change was planned and hoped-for, but to be honest, I’m not sure anyone but me really expected it to happen.

Those closest to me who saw the initial extreme changes in my behavior after my fall in 2004 were deeply skeptical about my recovery. They had to live with me on a daily basis as I became increasingly erratic, agitated, and withdrawn (and a little bit dangerous, to be honest). They were the ones who had to deal with this new person I’d become for reasons they could not understand. They were the ones who bore the brunt of my erratic behavior, my temper outbursts, my hurt and rage and fear and anger and lack of impulse control. They were the ones who had to deal with me flying into a rage, throwing things, attacking them verbally, and doing things that hurt them on a much larger scale — losing my good job and not being able to hold down steady work for longer than a year or so, not managing money, not taking care of the house, not being a present and responsible family member.

All the while they couldn’t protect themselves from that, because if they said anything, I would fly into a rage with them and become even more unpredictable.

The ones who were affected like this have had the hardest time seeing the potential of my recovery. They have hoped for precious little, to be quite honest, having seen how bad I could get. They got into the habit of handling me with kid gloves, treating me like a mentally impaired loser who needed to be coddled and kept cool at all costs. They had gotten used to the routine of carefully checking me out to see how I was, and then walking around on eggshells to keep me calm and non-agitated.

The human brain is an amazing thing. It watches for patterns, it identifies recurring dangers and situations, and it reorganizes your behavior in order to minimize risk and maximize safety. And the brains of those closest to me had become reorganized around the idea that I was pretty much a lost cause who would generally give things a good effort, but would never really amount to anything, and who would — as likely as not — end up in a temper flare-out that ended badly for everyone.

You know, it’s interesting how nobody really seems to talk about mood problems and anger/temper outbursts with traumatic brain injury. At least, not while the person is alive. One of the remarkable things about reports about CTE (chronic traumatic encephalopathy – the brain disease similar to Alzheimer’s that has been found in the brains of former pro football and hockey players — as well as a student football player), is that just about everyone talks about crazy-ass mood and behavior changes taking place after the person is dead and gone. But while the person is alive, there’s nary a hint that something is amiss.

Take for example  Shane Dronett, Bob Probert, Dave Duerson, and many other players who have posthumously been diagnosed with CTE. During their downward spirals, their situations didn’t make the news. Part of that, I’m sure, is because their falls from grace — erratic, violent behavior, business failures, unemployment, ending up living in their cars, in and out of jail — are not the sort of thing that people want to think about. Especially if it’s apparent (as it often is) that their situations arose from their former jobs of keeping us entertained by sacrificing their bodies — and brains — without any regard for their own safety. There’s a guilt that is never quite articulated by society at large, not to mention the families and friends of those in trouble.

Society has a hell of a time accepting these sorts of dissolutions. And friends and family too often feel responsible, as though they’ve somehow brought the violence and outbursts and erratic behavior upon themselves.

And then there’s the guilt of those who ARE in trouble — the confusion, the frustration, the anxiety, the depression. The constant trying to make it better, followed by recurring failures. Guilt and shame. Resolutions to try again… and then abject failures that can’t be explained.

One of the worst things about TBI is how it can strip you of your dignity. And when the people around you see — and are horrified by — your descent into behavior that is so “unlike you” that shame and guilt can be well nigh impossible for anyone to get past. People look away from what makes them uncomfortable. They distance themselves from aberrations. Want to become invisible? Present as someone with a disability of some kind, and watch people avert their eyes. Like Kevin Spacey’s character in The Usual Suspects, if you exhibit some sort of behavior that makes others uncomfortable and you don’t seem to be able (or willing to) change it, you can find yourself marginalized pretty quickly.

The problem with all this is that with TBI, one of the most important elements to recovery is social interaction. Connection with others. The ability to have community and connection with others. We are social creatures. We crave connection. Our brains are social organs that grow and change and adapt, based on social interactions. And when we are pushed to the side, marginalized because of our perceived differences, it just makes matters worse. It doesn’t give us a chance to come back to a place where we can be the persons we want to be, instead of the persons the TBI ushered in. It doesn’t give us a chance to practice our “social chops” and grow and improve and change for the better. Without feedback of some kind that tells us when we’ve succeeded or fallen short, recovery stays elusive. The traits and qualities that head trauma ushered in have a way of cementing themselves in place, essentially becoming the “us” that others decide we are.

That’s probably one of the most unfair phenomena of TBI — having others make up their minds about us as being a certain way after TBI, and deciding we’re not going to change, and they need to just get used to us being a certain way. When others do this, and they decide that we’re not going to change, we can get locked inside a prison of human making. It may feel safer for the people around us, if they develop these defense and coping mechanisms, but in the long run, it just makes matters worse, because it allows no room for recovery, and it locks everyone in a pattern of behavior that is far less than it could be.

It’s true — we will probably never get back to the person we were before. But that doesn’t mean we can’t become a different person of our own choosing and our own making. When we decide things aren’t going to change, and we resign ourselves to “accept the new normal” of limited options and curtailed activities, and we stop looking for what else is possible in our lives, we are neither fair nor honest with ourselves. And when we decide that injured others are permanently disabled and need to be handled with extreme care, we are giving up and consigning them to a prison of our making.

Change happens. Change is constant. And people change as much as politics and economics and fashion. We change in relation to events, but most of all in relation to others.  We mirror others. We connect with others. We evolve with others. And even in the aftermath of events that harm and hurt and kill, we can continue to change. Grow. Improve. Worsen. Deepen. Become more complex. Become more simple. We change.

But we need to be connected somehow, in order to do that.

Brianline has a great slideshow about a young woman named Freda who sustained a traumatic brain injury in a freak accident – click here to watch it. Perhaps the most remarkable thing about it, is how Freda’s friends rallied to keep her integrated into their social life, even though she was far removed from the flow of everyday life. Her family stayed with her. Her friends didn’t ditch her. Her teachers and healthcare providers worked to educate her peers about TBI. The community came together around her. And she came back.

For me, the connections that have kept me going  have been largely virtual. Connecting with people online — just about the only place I could find others who understood what I was going through — as well as one single neuropsychologist who didn’t treat me like a drug-seeking insurance fraudster who was just trying to get over on the system. I couldn’t really connect with my friends and family, because they were — and still are — really put off by the very concept of brain injury, and a lot of them had made up their minds about me a long time ago and still remain quite dependent on that interpretation of who and what I am.

The other way I’ve managed to connect is through work — the people at work, as well as the work itself. In that controlled environment, where I actively interact with others for 8 hours a day, five days a week, doing work that refines and educates me, I find a connection and a purpose that often eludes me beyond the workplace. When I haven’t been able to stay on for very long (because my anxiety level was getting so high, I couldn’t think straight anymore), I’ve been fortunate to be able to find new work, different work, to help me along. In the workplace, where I am required to interact with others, I find connections that often don’t present themselves in the rest of my life.

One of the important differences between work and my outside social life, is that there’s no room for guilt. There’s no room for sitting around feeling self-conscious. If I’m going to do my job and be fully effective, I have to engage with others on a regular basis. I have to get over my personal crap. I have to be a part of things. Or else. There’s not a lot of room for self-pity and drama. I know plenty of people who do indulge in those things at work, but for my own purposes, I can’t afford it. I have too much to do. I have too many things on my plate, to get caught up in personal dramas. It keeps me busy and it keeps me honest, and I have to constantly improve, or I sink like a rock.

The nice thing is, others at work can see I’m actively working at this. TBI doesn’t factor in at all in our interactions, because I have never discussed my situation with anyone at work, and I never will. It’s not something that needs to be part of that equation, and the last thing I need is to have to field all sorts of ignorant biases about what brain injury does to a person. It’s enough that I do my job and I do it well. The rest of it stays to the side.

And it’s tremendously freeing. Because I’m not locked away in a box made from other people’s assumptions about me and my prospects for change and growth. I’m not living under the shadow of my wary spouse who detects agitation in me and automatically begins to act like I’m a menace. I’m not constantly trying to prove to my loved-ones that I am capable of change, and that they don’t have to give up on me.

I can be who I want to be. I can be the person I choose to be, not the person others decided I was, 5… 10… 20 years ago.

People change. TBI changes people, but we can continue to change for the rest of our lives, regardless of initial setbacks. We may never go back to being the person we were, but that’s what happens with everyone, traumatic brain injury or no. Ask anyone about the kind of person they were when they were 20 years younger, and they’ll likely tell you they’ve changed a lot since then. If they haven’t, they were either uniquely evolved in their youth, or something has stunted their growth.

It’s in our nature to change. It’s in our nature to grow. It’s in our nature to improve, should we set our minds to it. With TBI comes a host of problems and issues — many of them emerging and sticking around, weeks, months, years after the injury itself. The guilt and shame and embarrassment can be pretty intense — for everyone. When you’re “not supposed” to do/say the things you are doing/saying, it can be pretty distressing for everyone. But you can’t let the distress get in your way. You just have to keep steady, keep an open mind, and keep following through to learn and grow and change for the better.

TBI does bring change. But it needn’t be a death sentence. Mild TBI needn’t derail your life, for no apparent reason. Blast injury has its own set of unique issues, but doesn’t need to destroy your future. And concussion can be profoundly disruptive, but it needn’t isolate you from the world for good.

Stay steady, stay open to change. And find out what else is possible for you and the ones you care most about.

All or nothing – for real

I have been looking at my notes from the past days, seeing what I’ve gotten accomplished, and what I haven’t.

There is a whole hell of a lot I have not gotten accomplished, that I have been promising myself I would. Some of the things I have not done are serious. They are job-related. Survival-related. Pay-related.

I cannot NOT do them. But that’s what I’ve been doing.

Not.

I’ve also been thinking about how long it took me to realize that my fall in 2004 had affected me the way it had. Some call it “denial.” Some call it a “cognitive blind spot.” I call it “not sinking in because I have so many other things to think about.” Things like stray distractions that come across my path that for some strange reason I cannot resist following. Like a mynah bird. Magpie me.

The really freaky thing is, I ‘got’ that my concussions as a kid had affected me tremendously, when I was young. The discipline problems. The meltdowns. The outbursts. The getting kicked out of class because I was too much of a handful and nobody knew what else to do with me. I also ‘got’ that the concussions of my childhood had affected my development and made it difficult for me to really function as a regular adult throughout most of my life. Certainly, I did a great impression on the surface, keeping a job (well, a series of jobs) and getting married and settling down and doing important things.

But nobody on the outside ever saw what went on inside. And very few people ever knew what living with me was really like.

The fact that my spouse has stood by me all these years is nothing short of a miracle.

Anyway, the reason I bring up my cluelessness about the impact of my fall in 2004, is that it’s the same kind of obliviousness that I now sense, around my work and the things I have let slide. It’s like I’ve been in this haze, this wandering-about fog, where my brain is busy thinking about everything except what it’s supposed to think about. And that happily distracted piece of me is quite content to not give much thought to my work.

But I must change this. Because focused attention is what helps restore my everyday function, one task at a time. I hate that I have to approach just about everything I do like some rehabilitation exercise, but I do. I just do. I have to make extra effort to get things started, and I have to make extra effort to stay on track, and I have to make extra effort to finish what I start.

I don’t like it. I hate it, in fact. But that’s how it is. That’s how it is with me.

So, I’ll make the extra effort.

And yes, I’ve decided to drop my shrink, once and for all, because they keep encouraging me to not work so hard, not be so hard on myself, not expect too much of myself.

That’s no way to recover. I need to recover, and not give up. I need to treat each and every day like a chance to recover some part of me I’ve lost — or am in danger of losing, if I don’t pay extra attention. I just can’t end up like the football players and other professional athletes who end up demented and/or dead long before their time, because they had no idea what they were doing to their brains, and they never found out what they could do to fix them — or probably ever realized that they needed to fix anything.

Enough of the blind spots. Enough of the denial. Enough of letting things slide and acting like that’s okay. I have to keep sharp. I don’t want to fade away. I don’t want to end up demented and dazed, because I was too dazed and/or lazy to put in the extra effort to keep my brain healthy and engaged.

I need to be healthy. I need to be engaged. Like the nuns in the Nun Study in “Aging With Grace” I need to keep disciplined and focused and not give in to my lazy streak… the streak in me and my broken brain that loves to wander around and follow whatever little distraction comes along. My brilliant mind knows better than to do that all the live-long day.

I must do better. Each and every day is an occupational therapy opportunity. I need to get back what I’ve lost – and make sure I don’t lose what I’ve worked so hard to get.

When TBI help is not helping

I’ve been thinking a lot, lately, about how I never got any diagnosis, rehab or therapy help for my MTBI’s (until the past year or so), and how that has affected my life. I’ve been seeing a therapist who is a neuropsychologist, as well as a diagnostic neuropsychologist who has helped me understand a great deal more about how my TBIs have affected not only my brain by the rest of my life, as well. And it’s great to be getting this help — and to be able to talk to friends and family members about my TBIs in ways that are helpful and actually informed.

But I have to wonder if maybe one of the reasons I’ve been able to function as well as I have (in certain ways) is because I’ve gotten next to no “TBI help” from people in my life. Nobody ever recognized (as far as I could tell) that being knocked out, falling down stairs, and/or being hit on the head a bunch of times, could have as big an impact on my cognitive and behavioral expressions as it did. Nobody ever approached me as someone with special needs who needed special attention, and whose needs should be accommodated.

To be clear, I had a lot of problems when I was a kid. The falls and sports concussions and the attack that knocked me out when I was eight appear to have skewed my behavior to the extreme, and I was pretty tough to handle at times. But all through my childhood, difficult as it was, I was never cognizant of having “problems”. I thought it was everyone else who had the problems, not me. I didn’t perceive myself as being different — in part because my parents never treated me like I was different, just difficult… in part because I think my perception was so anosognosic (I had no clue that I had no clue what was going on) that I couldn’t self-assess and self-regulate at all.

Granted, it’s no fun growing up being told that you’re lazy and a bad seed and that you’re just not trying hard enough.  It’s no fun having all the authority figures in your life yell at you, make fun of you, chastise you in public, discipline you, and generally hound you to do things you have a really hard time doing (if you can do them at all). But all the messages from my childhood that I internalized that took a toll on my self-esteem, as an adult, I can nowadays reason my way past them and reverse their impact simply by understanding that they just weren’t true.

Now, if I had grown up with the belief that I was damaged, broken, deficient… and that there was nothing to be done about it, other than compensate and make concessions and get special treatment from the powers that be, I think that might have taken an even greater toll on me. Because it would have been true. Irrefutable. Definitive. Sort of. I could totally see myself falling into this state of resignation over my broken brain and just never having any hope of building a real life for myself. I might have given up and become even more marginal than I was — not because the rest of the world didn’t understand me and my mind was having trouble wrapping itself around its difficulties, but because my spirit would have probably been broken, and I would have ushered myself to the margins and just been glad for what little I could get from life… hiding in the corner and sneaking out when no one was looking to gather crumbs that fell off the proverbial table.

I think, too, never having an explanation for why everything was so damned difficult for me all the time, actually helped me. It didn’t give me a reason to quit trying. All around me, throughout my life, people with expectations were giving up on me. Parents. Teachers. Grandparents. Aunts and uncles. Neighbors. Cousins. Just about anyone who had expectations of me had them dashed in short order. No matter how hard I tried, I just couldn’t seem to get it right. But I didn’t have a reason to stop trying. I was never told, “You’ve been injured — permanently — so why bother?” I was never “reassured” that it was okay to fail. I was encouraged to go easy by some people who lost faith in me, but I never gave up on myself, and I never lost faith that somehow, some way, I would figure out how to get done what I set out to do.

I just wasn’t giving up. I didn’t have any tools given to me, that I can recall, other than try-try-again, and I had to come up with a lot of systems of my own, but I did try-try-again and I did come up with systems. And somehow, some way, I did manage to build a pretty impressive life — and resume — in the process.  It’s been a long, tough row to hoe, and I’ve been knocked down more often than I care to think about, without people offering me a hand up. But you know what? I can bounce. That’s what I do. I bounce. I’m like one of those Weebles. I wobble, but I don’t fall down — permanently. Sure, my self-esteem is for crap, a lot of times, and I automatically disqualify myself from activities I messed up as a kid, which I could probably do now that I’m grown. But I’ve figured out how to keep moving, keep progressing, keep advancing… even in the total, utter absence of self-esteeem.

Surprisingly (compared to what I hear said all the time), you don’t actually require ironclad self-esteem to get stuff done in the world. In some ways, having severe self-doubts and low self-regard can keep you honest and working hard.

Now, I would imagine that TBI folks who receive formal rehab and are given tools to use to get by in life may have a more pronounced sense of ability because they receive guidance and training and rehab therapy that is meant to reassure them that they can do what they set out to do, and is designed to return them to functionality. And when they bump up against the upper limits of their capabilities, it may come as a surprise. I think that would be even more upsetting for me than not realizing you have problems, and encountering problems, time after time. I think that would eventually take a huge toll on my spirit. I would think, I’ve been shown strategies and given tools. Why aren’t they working? What’s wrong with me? Am I really that messed up? Why am I not getting better?

I wouldn’t know exactly what it’s like, because I’ve never had real rehab or occupational/speech therapy. But if I were getting rehab therapy, I would probably be inclined to push the envelope of my abilities, and I’d probably fall flat or run out of steam over and over and over again — and be really pissed off that things got mucked up. I should be rehabbed, right? That’s just me. I don’t know if others experience that, as well, but knowing myself and my tendencies, that’s probably where I’d be.

Another thing that I think might happen with people who get rehab and whose friends and families know about their head injury, is that they get moral support and encouragement from their various relationships, but when they muck up, they get that subtle (and often unarticulated) message that it’s okay for them to be less functional than they’d like to be, ’cause they’re brain-injured. So, they shouldn’t feel so bad about it. And maybe they shouldn’t try so hard… maybe they should just accept themselves as they are and settle into the kind of life that has been given them, rather than the kind of life they want to create.

I notice that happening in my immediate circle, where people close to me who know about my head injuries are trying to be loving and gentle, but they end up.. well, “emasculating” me in the process of my “journey towards wholeness”. I mean, it’s all very well and good for them to care enough about me to reassure me that I’m still a good person who has value, but it’s not helpful for me for them to downplay the importance of trying to do my best. It’s not helpful for me to have expectations lowered, and accept failure as a given. I’m still a work in progress, and there’s no telling how far I can go in life, given the right tools, the right approach, the right form, the right level of effort. But all too often, my circle of supportive friends and family seem to settle for accepting me as I am, which also includes accepting my screw-ups as being okay.

I wish they wouldn’t do that. I’ve got to have a talk with them about what I would like them to do.

For me, so much of doing well in life is not so much about innate ability, as it is about spirit and determination to develop what ability I have into something more. I think that’s something people lose sight of — especially later in life when full-grown adults (like me — I’ve got a birthday coming up, and I’m getting closer to 50 than 40 — when did that happen?) — are starting to wind down a lot of their activities and/or they’re accustomed to working with a set of abilities that they’ve honed over the years, but haven’t really worked at keeping up. And they figure they can just draw on what they’ve accumulated in the past.

For me, no matter how old I am or how much older I’m getting (and I’m damned lucky to be getting older, lest I forget how many close calls I’ve had in the past), I am not in a position where I can just slack off and accept things for what they are. If the rest of the world wants to retire and fade away, I’m not going to stop them. If the rest of my peers are going to quit improving and honing their abilities and making as much as they can of what talents and interests they have, I’m not going to stand in their way. But for me, I have to keep moving, keep improving, keep at it. And I have to not take any of my “innate” abilities for granted.

Doing that is inviting disaster.

That being said, I really think people need to be reminded that none of us has any guarantees in life, and freedom is never free. It’s entirely up to us, what we choose to do with our talents and interests and abilities, as well as our injuries and setbacks. Just because you have experienced an injury does not mean you’re any less able to improve than anyone else. Or that you are entitled to work any less hard. If anything, you have to work harder — but remember, that hard work can really pay off. No, there are no guarantees, and you may end up expending a lot of effort for what seems like a relatively small pay-off, but if you take delight in the discipline of the work itself, and you get something out of just having at it with all your might, then the outcome — while important — does not become the be-all-to-end-all.

And the work itself becomes its own reward… As well as all the perks you get from building your character and inner strength while working your everloving ass off.

But it’s still work. And to do your best, you have to keep your spirits up. And to keep your spirits up, you need to not be constantly reminded that you’re less-than (’cause the doctor said so), or that you’re disabled (because the insurance company said so), or that you’re any less deserving of your place at the table in life. You need pep talks and coaxing of all kinds — gentle as well as matter-of-fact. You need supporters who support the person you can become, not just the person you appear to be at the moment. You need backers who are realistic and optimistic at the same time — not out of some pie-in-the-sky Pollyanna BS, but because they know for a fact that the human experience is a deep, deep mystery full of ups and downs and twists and turns and wrinkles and Burmese tiger traps, but what good is life, if you’re just going to sit on the sidelines and cry boo-hoo?

So, it’s hard. This is news?

Okay, okay… I understand the necessity of grasping limitations, but at some point, if you’re going to have a life, you have to grasp all the harder at the things you have going for you, the things that make you a viable human being, your positive qualities and strengths that enable you to see past your limitations… and even turn them around in your favor. No, I’m not really that pleased that I’m at an age when I “should” be able to settle into a comfortable routine and rest on laurels I started growing 25 years ago. No, I’m not thrilled that when my peers are being promoted into higher and higher positions and paying off their mortgages and starting to have grandchildren, I’m still struggling with the basics, like remembering whether or not I’ve shampooed my hair this morning. I’m not at all giddy about the prospect of having to keep lists of really simple crap I have to do for the rest of my born days, in order to get anything done. I would like to be able to kick back and enjoy myself after all these long, arduous years.

But y’know what? That’s not going to happen. Not if I want to have any kind of a life. And it does me no good to sit around boo-hoo’ing about it.

So, what’s the story I want to tell myself today about my life, to get me in gear and make peace with the hand(s) I’ve been dealt? I think about my ancestors, some of the first pioneers who were “sodbusters” in the Great Plains several generations ago. Okay, I don’t agree with them displacing the Native tribes on that land or tearing up the prairie grass that kept the topsoil from blowing away and ending up in the Mississippi, but there’s a quality to their experience and their characters that I need to access for my own purposes.

I come from pioneering stock. The hunger for the frontier is in my bones. My great-great grandparents didn’t cry and moan about having to trek to the outhouse in -40 degree weather and thigh-deep snow to relieve themselves, and they didn’t whine about having to clean up with rough corncobs and Sears catalogs. That’s just how it was. It was the price they paid for the chance to live on the frontier and make their mark and be free to do as they pleased.

They didn’t fuss and fret about tending to wounds without a doctor nearby. They didn’t wallow in self-pity when the grasshoppers devoured their whole harvest. They didn’t freak out when life didn’t work out the way they wanted. They buckled down and did something about it. Or they accepted what was, and they worked at dealing better with it all next time.

In this age of junk food, convenience stores, cheap furniture, easy access to worlds of information, trained professionals whose services are paid for by insurance, and more and more tools to figure out how to live your life, it can be all too easy to forget the element of struggle that life can bring with it. And the harsh reminders can be hard to take. But in the end, life lived thoroughly is often a tough, tough thing to handle, and not everyone is up to the job of urging us onto the high, perilous road that leads to True Success.

Whether they’re professionally trained or in our innermost intimate circles, the people who are trying to help us  might be doing us the biggest favor by not letting us fail gracefully, by not reminding us that we’re diminished, by not accepting our shortcomings as a matter of fact. It might be hard for them to be hard on us, and it might be hard for us to hear what they have to say, but sometimes you just have to bite down on that piece of rawhide, take a long slug of whiskey, and do your best to hold still while your buddy digs that piece of lead out of your arm, cleans it with that stinging sour mash, and ties it up so you can both ride on.

Good TBI help shouldn’t be this hard to find

Update: Give Back Orlando is back! But the post below addresses a larger issue which remains problematic.

June 6, 2009 – Give Back Orlando’s Site is Gone

At least, when I go to http://www.givebackorlando.com/, I get the following message:

Directory Listing Denied

This Virtual Directory does not allow contents to be listed.

The message shows up on the other pages of theirs I’ve bookmarked. And I’m crestfallen. Because I really really wanted to have them as a regular resource. And now they’re gone.

Any of these could have happened:

  • they got so much traffic (from bots or from real people) that their server complained and went down and the person in charge hasn’t noticed yet and rebooted
  • they attracted attention from people who didn’t like what they had to say, who made them take it all down
  • they attracted attention from people who had ownership and copyright of some of the content there, who made them take the site down
  • they started getting all sorts of questions and comments and flood of info requests from outsiders that it got to be an overwhelming PITA
  • the folks who belong to the group didn’t want the rest of the world privy to their stuff, so they had someone hide it from outsiders
  • they aren’t in the assistance business beyond Orlando, and they got too much outsider input/feedback for the site to make any sense, or
  • some other thing we’ll never know about.

Whatever the reasons, it’s a pity that the site is gone. I’m still using the material, and I do find it helpful (so far). But it’s a shame that I can’t get to them anymore.

This disappearance is really emblematic/symptomatic of a lot of the head injury help resources I’ve seen around – they start out strong, then they get overwhelmed/-ing, and their work is just not sustainable. Either they get too big too quickly, or they don’t plan for expansion, or they just don’t have the bandwidth for the mounting tasks, or they are using tools that make the job harder than it has to be (like starting a whole website with rich media and interactivity and snazzy design, instead of a humble blog) … or, it turns out to be a very different effort, in the long run, than they envisioned it at the start.

I see this all the time with TBI blogs. No judgment on TBI bloggers, to be sure. Heck, it happened to me, when I first started this blog. If you look at my posting history, you see a flurry of activity for the first month or so, then silence for nearly a year, before the motivation started kicking in again.

It’s wild, doing the TBI blogging. You start out all fired up and wanting to make a difference in the world by sharing your amazing story, then you get hammered with all this info overload — from within and without. Not only do you get completely swamped by the many varieties of information out there and trying to parse it all out and make sense of it all, but you also get overwhelmed by all this internal self-realization that comes up, and you realize more and more how less and less capable you are in respects you once thought were ironclad, and you start to wonder if maybe you’ve revealed too much about yourself too soon and maybe that might prevent you from finding and keeping a job… and/or friends… and/or your hard-won position in society… and you have to drop back to find out where you really stand. You have to figure out who your audience really is, and why you want to talk to them in the first place.

After soul-searching and plumbing the depths of your experience, you end up either totally fed up and just wanting to quit … or… committed and motivated and eager to just move forward, even if it’s not perfect, even if you don’t have all the answers, even if it means that you’re going to have to make it a huge priority in your life and bump it to the top of your to-do list, each and every day, sometimes at the expense of other things that need to be done but will just have to wait.

A lot of people never get to that committed point. I suspect it’s because they get into it too soon. A lot of TBI survivors, from what I’ve heard, have a tendency to over-reach in the first months of their recoveries, and take on things that they don’t yet realize they cannot do. That happened to me, after my last TBI — I was taking on way too much, but at the same time, I was getting next to nothing done. I thought I was moving and shaking, but I was spinning my wheels in place, and it took losing several jobs and a lot of money to get me to pay attention to what was going on with me… and that was without the benefit of any formal rehab.

I would imagine that people who get formal rehab may consider themselves capable in different ways — having been shown tools and been given training, they may overestimate their autonomous capabilities… and end up either flaming out or getting into jams that are demoralizing and/or embarrassing and are in any case real disincentives to keep going.

It’s always unfortunate when this dropping out happens, but I think it goes with the territory of TBI. Especially MTBI, which is one of those pesky hidden disabilities that can depress the living hell out of you, if you dwell on it too much. If the focus of your online work is to educate people about the kinds of problems that accompany mild traumatic brain injury and you want to talk about solutions, it can be mighty difficult, because there are so many confusing problems to talk about…  and MTBI makes finding workable solutions to sticky problems difficult, because in order to figure out solutions, you have to know what the problem is, and your mildly TBI’ed brain isn’t always up to that task — and when it thinks it is, sometimes it’s not.

And then there’s the existential angst… If you’ve got an injured (okay, let’s be honest, damaged) brain, what right do you have to talk about anything? Especially with any level of expertise? Isn’t one of the requirements of expertise and authority, having a fully functional brain? Who are you to talk about it? Aren’t you a patient, after all? A victim? A survivor? Someone who is at a disadvantage, cognitively, who can’t even get through the day, sometimes, without making a mess of everything? Who are you to talk about TBI? Shouldn’t that be left to the experts?

But the experts are either few and far between, or they are otherwise occupied — especially with TBI, where the moderate and severe forms are a lot more interesting and dramatic than the “mild” kind, and they can get actual numbers and data on the impacts and effects. So, unless you talk about your (M)TBI, who’s going to? Who’s going to speak to the millions of people out there who suffer supposedly mild injuries to their brains, but find themselves increasingly incapacitated through the course of their lives and are so utterly, totally alone in a world that is far more interested in money-making injuries that render quantifiable data? Who’s going to speak to them? You?

So, there’s the quandary and conundrum. You want to help. And you want to share. But the more you try to share, the more keenly aware you are of your limitations and difficulties, and if you dwell on them too deeply (even if for the sake of helping others see that they’re not alone), you can end up in this TBI vortex of criticsm and self-doubt and self-assessment that goes nowhere, because in the process of examining yourself with a fine-tooth comb, you’re seriously wearing yourself out and making yourself even less cognitively viable.

So, the downward cycle continues. And some people never pull out of it. Just check online. Inactive TBI blogs abound. And now you know (part of the reason) why.

That being said, I’m collecting links to information from trusted sources which are funded and organized and whose purpose is to educate the outside world. I’m going to start with the Brain Injury Associations of different states. I’ll start at Alabama and end up at Wyoming, to make it easy on myself.

Because good help for TBI shouldn’t be this hard to find.