But I’m not afraid…

Well, it looks like I’m going to be dropping my current psychotherapist. After working with them for 6+ months, I’m seeing a regular pattern that I’m not comfortable with — every new piece of information I reveal about my past injuries and difficulties, and my present challenges, increases their trepidation about my present activities and my future prospects.

How many times can you sit in a room and have someone tell you that your hopes and dreams are unrealistic, given your neurological profile?

How many more weeks am I supposed to spend making room in my schedule for someone who actively discourages me from living my life — and paying them to do it?

Okay, granted, I do have a lot of difficulties and challenges, and no, it’s not easy. But the thing is, I flatly refuse to give in to the lot of it. I just refuse. I am not afraid to live my life, I am not afraid to stumble and fall. I am not afraid to take on new challenges and see what I’m capable of doing. I’m more afraid of never trying something, never taking a risk, never finding out just what I’m made of.

I have been injured, this I know. I have my challenges and difficulties. That much is clear. But I’m not afraid to step out and do what I need to do, to move myself along my life’s path. I have one life, and one chance to live it. If I sit by the sidelines, like this therapist apparently expects me to, I just don’t think I can live with myself. That’s not living — that’s surviving. Subsisting. And I’m built of better stuff than that.

I also have excellent resources on hand to help me along — namely, information and promising stories from Give Back Orlando and other sources — that provide me tools and orientation to get my life back in order. The vast majority of the issues I have are logistical, and if I just modify how I do things, tweak the execution a bit, I can get myself on the right track, and keep myself there.

There’s no mystery to it, no matter how mystifying the brain is. Bottom line is, my mind is what runs things, not just my brain. And when I devote more attention to being mindful, well, that solves a ton of problems out of the gate.

It’s when I’m not mindful — when my broken brain gets the upper hand and convinces the rest of me that it’s just fine, going it alone — that I get into trouble.

Real trouble.

So, my problems are by and large fixable. And the ones that aren’t, I just avoid like the plague. I delegate things to others who know better how to do them. I solicit help from people who are just dying to lend a hand. And I richly reward people with ample thanks and a ton of praise. I feed them, and they help me. And vice versa. It’s all good.

The one major problem I have, is I’ve got a psychotherapist who seems to be afraid of their own shadow. I dunno — I think within a certain context, they’re perfectly fine. At least, they were, three months ago. Maybe I’ve just grown a bit. Maybe I’ve just evolved. And their orientation is no longer helpful to me. That could be. I have been known to shift very quickly, and it wouldn’t surprise me if I were advancing in a sudden burst along my recovery.

But they don’t seem to recognize that, and they keep cautioning me against doing things like taking on responsibility and following down a career path that leads to more money. Just yesterday, they were telling me (as though I don’t know it) that more financially rewarding jobs entail more sacrifices from those who hold them. Uh, excuse me? Is that something they think I don’t know? I’m not so sure they realize who I am and what I’ve done with my life. I’m not sure they realize that it’s possible to live productively and radically well, even after a bunch of concussions. But even with me sitting right in front of them, telling them about how well I’ve been doing lately, they can’t seem to see it. Or they distrust it. Or they distrust me.

This makes me nervous. It makes me very nervous, indeed. And I woke up last night from a nightmare about a wildfire sweeping through my neighborhood, driving all these wild animals ahead of it. (Not sure how the lizards and wildcats and wildfowl got into the suburban neighborhood in my dream, but I’m sure that symbolism is all about me and the less “civilized” aspects of my personality.)

Warning bells are going off, and it looks like I’m going to be shopping for a new psychotherapist again… Fortunately, I’m seeing my neuropsych this afternoon, so I can ask them if they know anyone who specializes in therapy within a brain injury recovery context. They’re on the same page as me — totally devoted to realizing all the amazing possibilities of life, and refusing to settle for less — so I have more faith in the resources they might recommend.

The bummer is, the current therapist I have is listed as someone the Brain Injury Association in my state recommends. I’m not sure if I should mention my experience to them, as I don’t want to trash them. But if they’re running this head trip on me, what might they be doing to others?

I have to wonder.

Anyway, it actually feels good to be coming to this decision. I’ll talk it over wiht my neuropsych and see what they have to say about it, and then I’ll move from there.

{ Sigh }  This rehabilitation process can be a tiresome road at times. But it sure beats the alternative!

Onward.

My early-morning brain treatment

A few days back, I was mulling my morning routine and how to fix it. I tend to wake up aroung 5-6 a.m., which gives me an early start on the day. I often jump out of bed with lots of energy and feeling like I’m rarin’ to go. But then I usually get bogged down in some activity or another — checking email or writing or fiddling with some piece of information. I might wake up early, but I end up running late. And although I have lots of physical energy, I rarely feel mentally awake until much later in the day… sometimes not till 3 p.m. Not feeling mentally awake makes it difficult to get into the day, let alone enjoy my life as it comes.

I don’t much care for the feeling of a foggy head, first thing in the morning. It’s a part of my life that I guess I have to accept on some level, as my brain has been rewired to move more slowly than I’d like. But I really don’t care for  it, mentally or logistically. My team at work has a status meeting first thing each Monday a.m., and for the past couple of months, I’ve been either late or too rushed to prepare properly. That’s a lousy way to start a Monday. It has a crappy snowball effect on the rest of my day. And the rest of the week.

This will never do. I mean, honestly… it’s just embarrassing. For months on end, I’ve been trying to get to work early in the morning, on Mondays and beyond. No go. And work isn’t the only place this is a problem. For weeks on end, I’d been trying to get some very basic stuff done — contact the insurance companies who are handling my fender-bender from June (yes, it happened over a month ago, and as of two days ago, I had yet to finish the paperwork), give certain parts of the house a long-overdue scrubbing, take the trash to the dump, mow the lawn, and so forth. A collection of standard-issue weekend tasks and some extra outstanding things needed to be done — they’re not optional — but they have gone undone. Like I said, this will never do.

So, yesterday I told myself enough was enough, and I decided to try something different… something I have been meaning to do for many, many months. I decided to exercise first thing in the morning when I got up. Not after I had my cup of coffee. Not after I had my cereal and fruit. But first thing. Being somewhat neurotic about getting my coffee first thing, I promised myself I would at least put the kettle on before I started my workout. I promised myself I would turn the stove on medium, then exercise while I was waiting for my coffee water to boil. And (hopefully) to make getting my day under control a little easier, I decided I would devote the 20-30 minutes of my workout to thinking about what I had to get done that day… Thinking through the stuff on my to-do list, planning how I would get it all done that day. Basically mapping out my day.

I was skeptical, at first, thinking that getting on the exercise bike was going to be boring and drab and monotonous. But you know what? While I was pedaling away, my mind was waking up and getting into the day. While I was pedaling, I was going over the things I needed to do — things I didn’t really look forward to doing, like fill out paperwork, but had to be done. I thought through the act of doing each thing.

I thought about my paperwork — how I would take it step-by-step, first getting out the forms, double-checking the info there, filling in what was missing, making copies, signing them, adding a cover letter, and mailing them out.

I thought about my morning chores — cleaning and taking out trash and running to the store to pick up food for the dinner party we were having last night. I walked myself through each of the things I was supposed to do — and I threw in a nap for good measure. Pedaling and pedaling, I found myself not at all bored, but actually quite energized. And you know what? My brain was thinking better, first thing in the morning, than it had in quite some time.

By the time I got off the bike, I not only had a plan for my day, but I had thoroughly visualized overcoming all the tricky pieces that I thought might keep me from succeeding. I had a visual of my to-do list in the back of my head, and I had “road map” for all the different pieces of my day. I had effectively “choreographed” my day so that I had a pretty good idea what I could expect to get done (and what wasn’t going to get done), and I had a pretty good idea how I was going to handle things, when they came up. I had a common-sense plan for what order to do things in — do the messy chores before I took my shower, and then take a nap after my shower (hot showers always relax me and make me sleepy)… and wake up refreshed and with all my chores done before company came for dinner.

And you know what? It worked. After I got off the bike, I actually felt energized and awake. That’s rare. The blood pumping and the sweat I’d worked up, really cleared my mind. And as I got into my day, I found that I was able to not only get the really critical things done, but I managed to quickly take care of a few jobs I usually do at a fairly leisurely pace on Sunday mornings. That meant that I gave myself Sunday morning off, ahead of time… which meant that I could relax with our company on Saturday night, and not fret about staying up later than I would normally. My Sunday morning tasks were already done, so I would have more time to rest and relax, if I needed a Sunday afternoon nap (which I usually do).

All this, because I got on the bike and rode, first thing in the a.m., with the express intention of planning my day. Not only did I finally manage to exercise, first thing in the morning — which I’ve been trying to do for many months — but I also took command of my day — and my life. The exercise helped oxygenate my brain and it helped focus the kinetic energy I have in the a.m. into something I could use, that served me well.

For good measure, I did it again today. Once more, I felt myself waking up more, feeling clearer, and able to handle my morning tasks better than usual.  Something so simple — 20-30 minutes of aerobic exercise (I do work up a sweat and get my heart beating faster) — makes a huge difference.

Best of all, I don’t have to stop my life completely to do it. Years ago, when I was working out regularly, I used to have to completely halt all my activity to go to the gym or go for a run. That was fine then, when I didn’t have as many responsibilities as I do now, but nowadays I’ve got so much going on, that just stopping everything to exercise isn’t an attractive option. But now my morning exercise bike ride can be part of my active life, part of my day, part of my “personal planning and strategy sessions” that help me live my life that much better.

I’m sure it sounds elementary to some people, and there are plenty of folks who already know this. But this “discovery” that I don’t have to halt my life and stop everything I’m doing to fit in exercise, and that the exercise actually adds to my productivity (rather than takes away from it), is something I’m really reveling in. It is good.

Or, perhaps more accurately, can LIVES be saved?

I had some feedback from one of my posts yesterday about Bob Woodruff’s recovery from TBI.

I didn’t like the article at all – in fact I felt it did a HUGE disservice to brain injury and rehab – it gave the impression that there were these wonderful cognitive programs that could restore people to their regular functioning in a relative reasonable period of time, that these services could be tailored to everyone’s particular needs, and that so much has changed that brain injury is ‘curable’.

The reality:

The is little funding still for most services, most insurance plans cover very little especially in cog rehab – which may be needed for years to be helpful.

Recovery of any kind is YEARS – not months, not a year or two but YEARS.

There are no miracle programs – this is slogging through a lot of really frustrating activity, going round in circles, making mistakes over and over and over, training yourself to be disciplined about organization, planning, memory skills, rethinking your life career etc

While  I appreciate the Woodruffs bringing attention to the issue Bob Woodruff got top ranked care – the vast majority of people DO NOT receive ANYTHING like that – they may get a few months of cog rehab, some PT, and a year of neuropsychological counseling. The existing services for TBI are terrible, un-coordinated, cookie-cutter, short term, and severely underfunded. 90% of the survivors DO NOT get any thing that is customized – most do not get even half of what they need that would truly empower them and enable them to have productive lives with true quality of life
VERY little is still understood about tbi – especially mild tbi. There are probably many many people who have TBI’s and don’t recognize it as such – they are just considered ‘moody’ or easily distractible or have other issues in relationships etc. We know virtually nothing about how the brain works and organizes data, repairs itself or re-organizes after a trauma. Much much more research and money is needed to allow professionals  to understand tbi, provide better tools for helping people recover (whatever that may mean), better ways to diagnose and to eliminate the stigma involved. 80% of tbi survivors do not recover their previous employment levels, and equal numbers experience loss of spouse, family and or friends, NO ONE wants to tell a prospective employer they are a survivor. Most tbi survivors do not write books or go on tours or have understanding supports – they end up financially destitute or in severely reduced circumstances, alone, struggling and often develop addictions as a result.

The article presented a rosy cheery picture of tbi – just like having a hip replacement  – tbi is a life-changing event and is underfunded and not understood. there are no ideal treatments and many people end up overdrugged – even by the ‘professionals’. I get frustrated by such articles because they mislead.

Some folks in advocacy agree with me and others don’t. Some feel that any attention  to TBI is helpful and that at least by making it less strange it encourages people to accept that many people do have tbi’s and are ‘normal’.  So I admit that my opinion is not universal. I will also say that this was the second brain injury article by that paper that focused on a well-connected individual who got amazing health care – and in this other case that person did make a phenomenal recovery – again, the kind of recovery that 99% of tbi’s do not make. So some of my frustration is also based on that. I would love to see a “Ordinary Jane or Joe has a tbi” story – and what it means to lose your career, to lose your home, to have a changed marriage, to try and re-create a self, to have 3 months of cog rehab and told you are ‘fixed’ because your insurance ran out – to struggle in school, at work, to lose your job – all these things that are what happen to most Americans – including our Vets.

Healthcare is a critical issue in this country and tbi is part of that. It will be ignored and forgotten if the true loss of lack of care is not made clear.

You know… it’s true. The vast majority of us who sustain these types of injuries never get the help we need — many of us never even realize we need it… until too late (or almost). Personally, I consider myself extremely fortunate to have put two and two together before everything fell apart for good. I was awfully close to the edge, now that I think of it. I dodged a bullet. And I am incredibly grateful for the combination of fate, the world wide web, and my local Brain Injury Association chapter, for helping me put this together… as well as to my various therapists and friends and strangers who had the right info at the right time, who kept me from tripping and tipping over that very precipitous edge.

Not all are as lucky. And I have been lucky. I am very much aware that I could easily have ended up in much tougher straits than I am, right now. It was almost a fluke, that I even got a clue that I needed help. And while I have had to work my ever-loving ass off to get the help I need, and it feels like it’s been a long time coming, and I still have a long way to go, at least I have had the personal resources to launch into this quest for clues.

A lot of others don’t. They just get lost. Pushed to the margins. Out of sight, out of mind, out of luck.

I hate to say it (and I’ve felt a bit guilty about thinking this), but I’ve never been that comfortable with Bob Woodruff’s story and the way he’s been portrayed as a kind of “poster child” for TBI recovery. It’s like they’re not telling us the whole story — like how he really is at home, what his moods are like, what his interpersonal skills are like, what his memory is like.  He’s an attractive public mainstream figure, who has received the best treatment possible and works in a field where his performance is not only scripted beforehand, but edited between the time he does it and when it is aired to the rest of the world.

I’m reluctant to say any more about him, because I am not thoroughly familiar with his work, and what I’ve seen of him has been positive. No-way, no-how do I begrudge the man his recovery or his restoration to broadcasting work. He’s covering some really important stories that I enjoy watching. But I wonder how much similarity his experience actually bears to my reality. Or to the reality of countless other tbi folks. I wonder how his irritability/anger management is, if he has constant ringing in his ears or constant headaches or other chronic pains. I wonder what truly goes on in the privacy of his own home, where no cameras are rolling and no editors are deleting the segments where he’s struggling to find the right word or remember what he was going to do when he walked into the next room. I wonder what his life is really like.

One of the things that I think may have helped him get back to work, is the fact that he works in broadcasting. Being involved in broadcasting, myself, I know how helpful it is to have a script to go by, when you’re doing your job. I often create and use “scripts” in other situations, like when I go on job interviews, or I am leading a meeting and following an agenda very closely. Having a scripted line of work (or work that follows specific guidelines, like strict meeting agendas, or has a heavily-project-managed element to it) makes getting back to work — and re-integrating into society post-injury — a lot more straightforward, in my mind.

It’s never easy, of  course, but if you know what you’re going to say and do ahead of time, and you have ample opportunity to practice, and you don’t have to be “on” for more than the length of the take/recording… and you get to edit out the parts of your performance which aren’t that flattering… well, I can see how you could present a really excellent picture of miraculously restored health after what was supposed to be a fatal accident that would — at best — leave you a vegetable.

Thinking back to the positive tbi-is-fixable article in Parade, I’m struck by the emphasis on the idea that outside therapies are capable of restoring functionality post-tbi. I don’t doubt that having someone work with you can be of tremendous help, but from what I’ve seen and experienced, what you do for yourself, with yourself, by yourself, can be a critical factor in the degree of your success.  Of course, it is important to get outside help — especially from trained professionals who have made the study and treatment of tbi their life’s work. But I also agree with the Give Back Orlando materials about outside therapy only going so far — at some point, the insurance gives out or the prescribed treatment runs is course, or therapy is no longer available or an option for you.  You then have to step in and run things for yourself, or you’re just not going to get that far. Reading about long-term efffects of TBI, what I’m struck by is that folks may improve over the first several years post-injury… but look at them 10-20 years later, and sometimes they’re really struggling. I think the critical piece in this is self-reliance and the ability to do self-therapy.

Personally, I suspect that my own self-reliance has been the secret to my repeated recoveries over the years — never having any help, and being forced to fend for myself. Not that I had any choice, mind you. My first injury was 36 years ago, and nobody had a friggin’ clue about mild tbi, back then. A year after that, when I had another more significant injury, it was worse, but not bad enough to send me to the hospital, and they probably would have just sent me home again, anyway. I’ve been hit on the head, fallen down stairs, fallen out of a tree, been hit from behind in several different cars, and I’ve had my bell rung more than once while playing contact sports, over the past 36 years. If anyone should be marginally functional and struggling in vain with basic stuff, it would be me.

But I’m not.  I do struggle terribly at times, and I do have some pretty problematic issues, but I usually manage to figure a way out of my predicament… eventually. I’m not destitute, and all my friends and family haven’t fled from me. I am not homeless, I am not out of work, I am not that terribly marginal — except to the degree I pull myself out of the mainstream frenzy to keep my balance and sanity. Best of all, I am not in jail (granted, I dodged the bullet of arrest a bunch of times, but hey – at least I dodged it, right?) Given just slightly different reactions and choices in many of my life experiences, I could easily have ended up in an institution of one kind or another. My own parents tried to get me committed due to my “inexplicable” behavior, about 20 years ago. It didn’t work, I’m happy to report.

Maybe I’m just too stubborn and too averse to acting/living/thinking like someone who’s brain-damaged. Maybe I’m too proud to give in. Maybe I like having a regular life too danged much to let go. Whatever the reason, I’ve been self-reliant and headstrong and stubborn from the start, and I credit my tenacity and determination to just keep going, regardless of whatever the heck life throws at me, with keeping me in the game.

Now, I wouldn’t recommend following my tumultous loner’s path to anyone — tho’ a lot of us are in this “boat”. It’s lonely and confusing and confounding and can drive you half mad. It can also really piss off everyone around you and cost you jobs and friends and family, and you have to work twice as hard after the fact to fix things up again. But at the same time, a lonely, isolated path forces you to develop a self-sufficiency and skills that you might not have to, if someone else were standing by your side, walking you through everything, checking in with you regularly, and keeping you on track.

It’s kind of like that “restraint” training that some stroke survivors do — to train the hand/arm/fingers on their impaired side to function again, they tie down the arm on their able side, so they’re forced to use the impaired side. And they can progress at rates quicker than those who don’t use this technique. I’m not sure if I even have a lot of “un-hurt” parts of myself to tie down. I’ve been pretty roughed up, over the years. But I’ve forced the broken parts of me to keep going, regardless, and it’s paid off.

That being said, what I think helps me the most as a long-term multiple mild tbi survivor who is not just surviving, but thriving, is:

  • keeping my spirits up,
  • staying intensely interested in all of life around me,
  • staying positive and solutions-oriented, and
  • having plenty of access to quality information — both from the internet and neuropsychologists who are available to me.

I wish to high heaven there were head-injury-aware neurologists who were freely available to chat with the tbi survivor population — maybe I’ll check with my local BIA chapter to see if they know of any — because I’d love to be able to ask them a bunch of questions about brain function (particularly mine) without needing to clear it with my insurance company. I need information. I thrive on it. Even if I don’t understand every little bit of it, and there are pieces that get lost along the way, still… it gives me a general orientation in how to live my life. And that helps. I need information to save my life. Literally.

That’s what it really boils down to, I guess — not so much about saving my brain, as saving my life. Sure, of course, I want to save my brain, but there is much more to me than what’s between my ears. There’s what’s in my heart — and in my gut. There’s what is in my spirit, as well as the sum total of my past experiences and all the invaluable lessons that have come from that. My brain may have issues that need to be dealt with, but ultimately, there’s a whole lot more to me than just gray and white matter segmented into various lobes and cortexes (or is it “cortices?”). There’s a whole person in here, with a lot more going on than the electrical impulses and connections between synapses and neurons and dendrites and whatever else is up there (that they know about or haven’t discovered yet, which I suspect is a lot).

And I think that’s also what gets lost, a lot of times, when people deal with TBI. They are so focused on the brain, on the individual functions of the brain that need to be restored or changed or compensated for, or whatever, that they can lose sight of the rest of themselves that is so very vital in dealing with their new brain, their new personality, their new self. The old brain is gone. The old self is gone. It’s not coming back. It can be a terrible loss, and it does need to be recognized and grieved. But at some point, you’ve got to let go of the idea that things can be the way they were before. They can’t. You may be able to get back to a semblance of your former functioning, but the old ways of doing things are gone-baby-gone. It’s a tragedy. There’s no two ways around it.

But that’s not the end of the story. The good news is that for every old way that’s gone, there are lots of new ones waiting to be discovered and developed. The brain is an awfully big place (its size notwithstanding) with a wide, wide world of possibilities. The human spirit is enormous, with more capabilities than we can ever imagine. The body is also capable of incredible changes and adaptations that can compensate for plenty of problems. I’m not trying to make light of tragedy and loss, or make it out to be less serious than it is. It is serious stuff. And it is a terrible, terrible thing when it happens. But there is a whole lot more to us, than we can ever imagine.

And until we put our minds to it, we can never begin to find out just how much is in there.

So, while I do often wonder if brains can be saved, I’m ultimately much more interested in how lives can be saved. It’s not always about what’s in our heads that counts in life — it’s what’s in our hearts.