Now you can help me to help others with TBI

Reaching out to others is what brings us back to ourselves

After some very helpful feedback yesterday, I decided to go ahead and put a “Donate” button on my blog. You can see it in the right-hand column of the page. I’ve been thinking about doing this for a long time, but I never got around to it. I’m a firm believer that, of all people, brain injury survivors need access to information and connections that’s comprehensive, accessible — and free.

Experiencing a brain injury, or sharing your life with someone who’s had a TBI is taxing enough, as it is. And I think there’s a special place in hell for people who prey on TBI survivors and their families. I’ve had the mixed blessing of getting clunked on the head a bunch of times, along with a love and passion for writing. So, the two of them have combined to produce this blog. I’m committed to carrying the message that

Brain Injury Recovery is Possible.
I should know. I’m doing it.

and spreading that word as far as I can. I’ve been doing it on my own, since ’round about 2008, and as unlike me as it is, I’m actually reaching out to ask for help in doing that. Ideally, I would love to support myself through my writing and this work, but that’s not going to happen overnight. I have a number of writing projects in the works, which I very much want to get done and get out there. It’s just one step at a time with this plan of mine. And if I just keep at it, I believe I can get there — and learn a whole lot in the process.

Putting up a “Donate” button is a first step in that direction. Eventually, I may get to where I can focus on this work full-time. But for now, I’ll simply live my life as it is, share my experiences and lessons, and give others the chance to pitch in, if they like.

Ultimately, though, this is not about me. It’s about you. It’s about the readers. It’s about reaching out to others in a frank and hopeful manner, to offer insights into how brain injury recovery progresses — or regresses — and what can possibly be done to help the process along. It’s a complicated thing. It’s a very, very human thing. And more needs to be written and shared about it on a regular basis.

Whether or not money comes in, I will continue this work. It’s needed. I wish to high heaven I’d had access to this, when I had my last “mild” TBI in 2004 and everything started to fall apart in my life. But I didn’t. I had to learn from too many costly mistakes — which are still dragging me down, to this day. I would hate for that to happen to anyone else, but I know it does. And many people have it much, much worse than I. It’s heartbreaking, really. Absolutely crushing, to think of the level of human suffering — much of which happens because of lack of access to the right information at the right time.

We do know this from multiple studies:

Early intervention with the right information can help to reduce the impact of mild TBI / concussion.

It can help people with recent brain injuries understand their injury and make better choices about how to manage their lives. It can help keep recovery times to several months (sometimes weeks), instead of the years and years that some people experience.

And that’s part of my mission — to get brain injury recovery information to recently concussed individuals quickly, before the desperation sets in and/or they start making the kinds of decisions that will either further endanger them or prolong their recovery.

Beyond the initial “acute” period, I want to provide support and encouragement to individuals who are recovering from mild TBI and are confused about what they can expect, and why it’s taking so long for them to heal.

In the long run, for those of us who have prolonged periods of difficulty, struggle, and various levels of catastrophe, I want to provide an insider’s view into what it’s like to piece your life back together, after others have given up on you, or flatly refused to help you anymore. That happens all too often. I’ve lived it. I’m still living it. And it breaks my heart to think that others have to go through this… “experience” (that’s my nice, polite way of putting it).

So there it is — why I do this, and what my mission is.

I realized today that I’ve been feeling depressed and defeated over my old neuropsych moving away. I really did enjoy working with them, and they gave me so much good, encouraging information to work with. They gave me a weekly shot of hope, like no one else ever had. Losing them was a pretty big loss for me, and five months later, I think I’m nearing the end of my grieving period for that loss. I think it takes about six months to regain your footing after a significant loss. And yes, it was a significant loss for me. I’m just now realizing that.

But I’m ready to get back to work. And getting clear (again) about what this blog is really for, is a good place to start from. It’s a very good place, indeed.

So, if you also believe in this mission, and you’d like to help me get the word out, you can donate below. You can make a one-time contribution, or contribute monthly. Any amount is welcome. Thanks!

 

Onward! … Together

 

Back on track…

Back in the regular world today, after being out of it for the last week. The trip to families went extremely well. Better than expected. Better than ever. It’s hard to believe how difficult it was for me in the past, compared to how it was for me, this trip.

How amazing, that the changes I’ve been making — getting regular exercise, tracking my daily activities, actively monitoring and managing my days — have made such a dramatic difference. I think, really, just understanding that I have issues, to begin with, gives me something to work with. It gives me a baseline against which I can compare my future progress. And it lets me see the progress for what it is — nothing short of amazing.

In all honesty, I never ever thought I could have that much fun with my family. I never thought I could communicate as well as I did, or that I could relax around them as much as I did. You have to understand — for as long as I can remember, I have been an uptight, frazzled mess around my family, and I had all but written them off for good, many times in the past. I just never thought I would be up to dealing with them.

And for good reason. They’re a handful — all of them. And if I’m not careful, I can get overwhelmed and completely overtaken by all the activity. My parents are physically rough — they’re not abusive, but they are heavy-handed, and the back-thumping of my mother has long been a problem with me. I’ve secretly (or maybe not so secretly) wondered if I would ever be able to be around them.

The thing is, though, this time, I was able to be around them. And I was able to weather the constant storm that is the inside of my parents’ house. I was able to relax and be with them, and just chill. And even when I did get overwhelmed, as I did more than a few times, I was able to step away, calm myself down, and get back in the fray in no time.

How amazing. The sensory issues I’ve always had around them were not in over-abundance, as they tend to be. The overwhelm that I frequently feel with them, was not so much in evidence that it derailed me. I was able to carry on conversations with people, spend some quality time with my nieces and nephews, and really connect with everyone in a way I’ve never been able to do.

So, now I’m back into my regular life, trying to recuperate enough to get back to work. Work. Blech. I’d rather lie around and read or listen to music. I’d rather draw or paint or write. But no, I must work.

And this is where I’m going to put some of my new energy to work — figuring out how to really work well, in this coming year. Including the last few days of the current year. Work intelligently. Manage my energy, just as I did with my family. Be smart about things and set priorities. And not get too caught up in stuff that is passing and is not specific to my Life Goals.

I’m thinking about this… thinking… and doing. I didn’t do such a good job of it, today, but I’m tired from the travel, and I have a little bit of time, till I have to hit the ground running. This will take more work. And a deeper understanding of what I want to do with my life and accomplish in the world. I’m getting back, bit by bit, and it feels good.

The plan is to get back, yes. But also to move past. Up. Beyond. Onward.

A learning life is the best rehab for me

Tomorrow is Thanksgiving, and today I’m traveling to my extended family, several states away. I expect the traffic to be heavy, and I expect the trip to be long. I’ve spent the past week preparing myself for this mentally, emotionally, physically, and spiritually. I’ve consulted with my neuropsych, I’ve checked in with friends, I’ve been eating right and I’ve been working out and stretching regularly. Last night I actually got eight hours of sleep.

This year is very different from past years, in that I’m not pushing myself up to the very last minute when my spouse and I hit the road. I’ve been taking it easy, taking the different tasks in manageable pieces, not biting off more than I can chew, but keeping on task and on point. And I’ve been using my timer, to make sure I stay on schedule.

This year is also different, in that I called my parents ahead of time to find out what the plan was going to be for the next few days. I checked the weather, too, so I could be prepared to offer suggestions. I’ve requested that we just take Friday “off” and relax and do some light activity outside — the weather is going to be beautiful, and I would really like to spend time with my folks, just hanging out and talking.

I am also planning to share with them the findings of my neuropsych evaluations and work. I’ve made tremendous progress, over the past year, and I want to share the info with my parents in a positive and constructive way. I haven’t been able to do that, till lately, as I’ve had a lot of reservations about my progress (not helped by my psychotherapist, who has been trying to talk me into “accepting” (i.e., giving up on) my limitations and settling for less of an amazing life than I believe I can have.

I’m not sure how they got to be that cynical, but I’m not on the same page with them, and I am certainly not going to settle for less, just ’cause I’ve had some misfortunes along the way.

Anyway, I’ve been giving a lot of thought to how much progress I’ve made over the past year or so. My neuropsych says they are encouraged and inspired by my progress, which is great. I’m really happy I can return the favor of their assistance. I really have come a long way. A year ago, I was pretty turned around, I didn’t have much direction, and I was very muddled and confused by the ramifications of my issues. I had a long way to go, to figure things out.

My previous therapist wasn’t helping matters, by constantly focusing on what my mother did, as a source of my woes. I invested a lot of time with them, essentially being led down the wrong path — it wasn’t necessarily my mother (or my father) that was the root of my issues. It was more the neurological context in which I was living in my childhood — all those unidentified, misunderstood, pesky issues that complicated and intensified every experience I had, and had me “pegging” emotionally and behaviorally all over the map.

Now, I have to say, my current psychotherapist has helped me regain my balance from before. I think my previous therapist was trying to regress me, to find some deep, dark secret hidden in the innermost recesses of my psyche, so they could exorcise my demons or something like that. And my current therapist helped me regain my balance by helping me focus on the logistics of my day-to-day life, rather than floating around in the distant past. And I am very grateful for their help (tho’ I have to move on now).

Indeed, I think the thing that has helped me the most, over the past couple of years, has been the help I’ve gotten in dealing with my everyday life — keeping my issues in mind, understanding them and how they impact me, and getting to the bottom of the problems I can expect to have, given different situations. Being aware of patterns, like:

I get tired after a full day of intense activity, and when I get tired, I have a tendency to get turned around and agitated, which adds to my internal confusion and throws gasoline on the fire of my temper… and really contributes to me melting down over every little thing

helps me immensely, and it also helps the people around me to help manage and anticipate my issues before they get completely out of control.

And one of the big things that helps me identify my patterns is examining my life on a regular basis. I take a lot of notes, and I record a lot of my experiences. I look back on my days and weeks, and I watch for issues and patterns that emerge over time. I write down the times when I am having a really hard time of things, and I identify the contributing factors. And I draw pictures of my problems and the “flow” I use to deal with them. I work with my life — the failures and the successes — as my own individual recovery plan and practice. And I see results.

Real results. Like promotions at work. Like improved relationships with others. Like a more creative approach to my life, overall. If I can get past the old bad habit of being so hard on myself, and I can treat my difficulties as challenges (from the outside — from my faulty wiring — rather than from my inside character or personal worth) to be tackled creatively … challenges just waiting to be overcome… well, then, the ultimate results of my examined life are tangible improvements, the likes of which I never thought I’d see happen.

Truly, this is remarkable. I always thought — before I knew why things were always getting so screwed up with me — that I was flat-out doomed to failure. I had precious little expectation that things would ever turn around for me permanently… I figured it was always just a matter of time, till things got mucked up for no reason I could identify, and everything I’d worked so hard for just went away, swallowed up in the sinkhole of my life.

But now that I’m paying attention to the basics, and I’m following up to deliberately study the results of my actions and see how they can be improved… Now that I’m treating my life like the miracle that it is, and I’m studying my daily “playbook” with focus and intention, and I’m refining my approaches, based on what I know about my limitations, I no longer believe that I am stuck in endless cycles of attempt-failure-attempt-failure-attempt-failure.

My life is different now. Because I’m living it differently now.

And it’s good.

In case you’re wondering how I go about doing this, here’s the basic flow of my practical-life-recovery-plan:

1. I figure out what I want to do. I understand why I want to do it, and how it fits in the overall picture of my life. For example, I figure out that I need to exercise first thing in the morning, and I need to really work up a sweat, because I have been feeling a little sluggish lately and I need to “pump up” my system a little more.
2. I do it. And I track what I do. For example, I do my morning workout, but I don’t manage to work up much of a sweat.
3. I figure out if I accomplished what I set out to do, and if I succeeded, I celebrate in some way. If not, I ask myself why that is. For example, I make note that I worked out — and I congratulate myself for doing that — but I didn’t work up a sweat, and I wonder why.
4. I figure out why I didn’t accomplish exactly what I set out to do, and I ask myself what I can do differently to change that the next time. For example, while I’m having my breakfast, I look at how I’m doing, and I realize that I’m tired and distracted. I figure out that I didn’t get to bed at a decent hour the night before, and I also see that I let to many errands wait till later in the day, which pushed my schedule back farther into the evening, so I couldn’t relax and get to sleep at a decent hour.
5. I think of alternative strategies I can follow to make changes in my daily life, that will help me accomplish what I set out to do better today. For example, I spend a little more time planning my day in a way that will let me get my busy-work done first thing, and give me more time in the afternoon to take it easy and wind down.
6. I go about my day and check in with myself periodically, to see how I’m doing. I make a point of remembering the goals I did not accomplish, which I really, really wanted to accomplish, and I work a little harder to keep myself in line. For example, I check my daily work list periodically to make sure I’m staying on schedule and make sure I’m not overloading myself with extra stuff in the evening.
7. Last but not least, I follow up. I do a check-in later to see how I’m doing, and if I’ve accomplished the goals I set for myself, I celebrate and reward myself. For example, if I get to the end of the day without wiping myself out, I treat myself to a little bit of television, watching a show on cable that I really like. Or better yet, I make an early night of it and I get in bed at a decent hour, which lets me sleep and sleep and sleep till I’m actually rested.
8. And then I do it all again the next day.

To some, it might sound arduous and like a lot of work, and it is. But it’s good work, and it’s really more of an orientation to my life, a kind of spiritual practice, if you will. In the Give Back Orlando material, they talk about how TBI survivors need to be more mindful of their lives, and I have found that to be very true. But even more importantly, I’ve found that I want to be more mindful of my life. Yes, it’s work, but I don’t mind the work. Yes, it’s different from how most people live. But I’ve never been like other people, so why start now — and why feel badly that I can’t be like them? I’m just fine, the way I am.

In the end, yes, it does take more work to live this way. In the end, yes, it is more time-consuming to do things that a lot of people do quickly and easily without a second thought. In the end, no, I don’t have as much time to fritter away on non-essential activities.

But in the end, the payoff is huge. I get to have a life.

Better yet, I get to have the life that I want to live.

Alicia – A film about a brain-injured woman

I happened upon this film (broken up in to segments) about a brain-injured woman from Australia.

Seven years earlier, an 18 year old woman, ALICIA was seriously injured in a car accident. It was her brain rather than her body which suffered.

This documentary tells the story of her long journey of recovery. Not content with just regaining a ‘normal life’, Alicia pursues her original dreams of becoming an actress. Through Beth, the main character from Sam Shepard’s play ‘A Lie of the Mind’, Alicia is able to express the common experiences of brain injury, her alienation from society for being different and her lack of inhibitions.

Flashbacks, dreams, Alicia’s video diary, interviews told with heart and extraordinary honesty by her family, friends, medical practitioners, healers and theatre colleagues; all contribute to unmask and reveal the many faces of Alicia and explores the issues confronting everyone involved with acquired brain injury. ( http://www.stellamotion.com.au)

Watch and learn

Seeking balance

Every morning I get up and exercise. I don’t always want to, but I do it anyway. As I’m working out, I often have to run through a whole list of reasons why I am doing it, why it’s a good idea, and what I will gain from the experience. I’ve made an agreement and a contract with myself  to do this each morning — in part, to avoid having to go on medication for my trouble waking up in the morning, in part, because it just feels so good to have exercised… after the fact.

One of the big payoffs that I promise myself I’ll enjoy, is improved balance. I have always had vestibular problems (which might have contributed to my falls when I was a kid?), and on and off, I still have trouble with dizziness and lightheadedness. I’m regularly concerned with the threat of additional falls or accidents, due to my intermittently poor balance.

Exercise, it’s my understanding, helps with balance, by strengthening the muscles we use to keep upright. (Especially strengthening the muscles of the pelvic floor — the muscles that keep your internal organs vertical, as well as connect the parts of your pelvis/hips.) It makes sense to me.  I’ve heard that the elderly become more prone to falls if they are weak, so strengthening the muscles with some basic exercises — like I do in the morning, each day — can go a long way towards keeping you stable in a vertical position.

I recently came across the blog Balance Chicago, which talks about vestibular rehabilitation. I will be checking them out, from time to time, as losing my balance is one of the most hazardous things that can happen to me – especially if I’m at the top of a flight of stairs or I am doing something physically strenuous. Falling is a major cause of head injuries — and my most serious TBIs have been due to falling. Out of trees. Down stairs. While playing sports…

But physical balance is only one piece of my puzzle, albeit a very important one.

Just as important to me are emotional and mental balance.  Exercise helps me work out my agitation, first thing in the morning, and it helps me train myself to pay attention to what I’m doing for extended periods AND focus on my form, which also contributes to impulse control. And when I have focus and can manage my attention properly, I find myself more emotionaly and mentally centered.

That’s especially important, this time of year. Thanksgiving is coming up, and with it comes a shift in my daily activities. This could really throw me, if I’m not properly prepared, because I rely on my routine to keep myself stable and sane. Additionally, at the same time that my major support, routine, is being disrupted, more demands are being made on me, in terms of activities and more social interaction. Without proper preparation, it’s a recipe for disaster.

And the fact that I never adequately planned or prepared in the past, is probably a big reason why the holidays in general have been so challenging and traumatic for me.

This year, I’m doing it differently. Together with my spouse and my neuropsych, I am spending a fair amount of time planning and prepping and thinking through the trip out of state to see my biological family. I am walking myself through the days, ahead of time, seeing where I can fit in my exercise routine… checking the weather for the area I’ll be in, so I can tell in advance if I need to take rain gear or not, and I can tell if I’ll need to really motivate myself to get out of the house, first thing in the morning. Next Thursday through Sunday look all clear — a good thing — with highs in the 40s and 50s. So, the weather should not be a discourager for me.

This makes me so happy! 😀

The shift in schedule is also causing me (yet again) to see how important regular routines are for me — and to realize that not having a regularly scheduled time with a psychotherapist is a problem that needs to be solved. My last therapist always had me in the same time slot, with rare exceptions. That was much more doable for me. The next therapist I see needs to make a regular appointment for me. That’s non-negotiable. Well, to a certain point… within reason, of course.

Again, balance is important.

Anyway, one of the other things that’s been in the back of my mind is that this Thanksgiving weekend is the 5-year anniversary of my fall down the stairs of the house I’ll be visiting. I lost my balance at the top of a very steep staircase, and I went down hard, hitting the back of my head on the steps a number of times. And from that point on, my life changed in subtle but rapidly worsening ways, till it was almost too late before I realized something was terribly, terribly wrong with me and my life.

It upsets me so much, that I lost so much — a critical chunk of time out of my promising career, my retirement nest egg, my savings, my credit… and I almost lost my marriage in the process. My inability to parse out what was going on with me caused a lot of things to deteriorate terribly around me, and I’m just now starting to battle back. But I’m battling. And I’m getting back. I’m making amazing progress…

And I need to remind myself of that. Because if I don’t, I get out of balance again, and I start focusing on all the things I’ve done wrong and have messed up.

I don’t want to do that. I want to have a good mix of positives and negatives. I want to be able to see all the amazing progress I’ve been making, over the past few years. And I need to measure my success by new measures that recognize the hidden difficulties I have, and accurately assess my true progress.

I have another appointment with my neuropsych tomorow, who is helping me think through my plans for the holidays. I’m unbelievably fortunate to have this person in my life, and I’m glad that I can help them, too, by doing as well as I am. They’ve told me that I inspire and encourage them, though I’m sometimes not sure why they would say such a thing.

Well, it’s not for me to decide what they should or should not think of me and my progress. It’s just nice to have someone who can objectively understand my issues and truly appreciate my progress — to balance out the people can’t, won’t, and don’t.

You never know what’s possible

Literally. You never know what people are capable of doing — both good and bad — till you see them in action. And you never know whether or not you’re going to be surprised, disappointed, encouraged, or discouraged, by whom and what you encounter along the way.

One of the most damning things that anyone can do to a TBI survivor, is tell them to ratchet back on their expectations in life. You never, ever know what is possible — especially when it comes to the brain.

Certainly, there are facilities that people lose. Certainly, there are greater difficulties in areas that used to be so easy. Certainly, there are additional challenges, and learning how to adapt and compensate takes a tremendous amount of effort.

But it can be done. RECOVERY FROM TBI IS POSSIBLE. And anyone who tells another person otherwise is doing someting far worse than attacking their body — they are attacking their soul.

Now, I’m not saying that everything is going to be hunky-dory, and all you have to do is pretend things are fine, and they will be. I tried that for most of my life, and it didn’t work.

What I AM saying, is that with a shift in approach, a course correction, a new set of coping mechanisms and strategies that are specifically tailored to address cognitive/behavioral/neurological/physical changes that come in the wake of TBI, IT IS POSSIBLE TO HAVE A LIFE — AND A REALLY GOOD LIFE, AT THAT.

Anyone who tells you different is serving a master other than hope.

It could be that they are trying to “protect” you from harm. It could be that they are trying to protect themselves from the difficulty of seeing you struggle. It could be that they just have no imagination whatsoever. But whatever the reason, if you have someone (or more than one person) in your life like that, you owe it to yourself to get some new friends. Find support. Find believers. Find people who have the innate ability to trust and have faith.

And keep going.

Because you never, ever know what else is possible in your life.

What she said… about never giving up

Over at Unsolicited Advice, this wonderful pearl of wisdom about TBI survivors:

What these men, women, and children need is for us to believe in them. They need for us to know that they can recover. Obviously, there are varying levels of severity among brain injuries, but most patients can see at least some improvement if they work at it.

If someone feels like everyone has given up on him, he often stops trying. This is a very dangerous situation for a brain-injured person; because of the brain’s amazing plasticity, it seems that the more a person does, the more he can do.

We must expect that brain-injured persons will recover, at least to some degree, rather than telling them they will never function again. We must talk to them as though they are still people, even if they don’t understand what we are saying at this moment. We must respect them and remember that their stories began long before the injury. They had a life full of promise, just like the rest of us, and can again; but they need our help. We cannot give up on the brain-injured community!

I’ll second that.

I’ve been stewing over my worsening experiences in therapy, today. The day has been a productive one, and I’ve made tremendous progress with tasks I started earlier in the week and struggled with for several days. But in the back of my mind has been lurking this simmering frustration over my psychotherapist’s apparent decision that I’m too impaired to be repaired.

Please note, I am very wary of this being the impending holidays approaching that’s mucking with my head. The holidays are often difficult for everyone, psychotherapists included (I would think, especially them, because they have to serve a client base that’s even more in need of help that most people — and even the most “regular” amongst us gets a little squirrelly at this time of year).

But when I think back on the exchanges I’ve had with them, it hasn’t just been the past few weeks that have rendered comments that suggested I wasn’t up to the task of doing my job, or advancing my career, or sustaining my marriage, or keeping my house, or having the standard of living that I am accustomed to. Those comments have been peppered throughout our conversations, and I think it’s finally just reached a breaking point with me. It could be that, rather than being a burdensome strain on me that’s taxing my ability to reason, the holidays are actually clarifying a lot for me and bringing into very clear focus what I will and will not tolerate in my life.

Being dismissed and diminished by someone who doesn’t seem to want to really get to know me or listen to what I have to say, is not the kind of experience I want to continue in my life. It’s just so debilitating. And it makes you want to give up. Just going through a 50-minute session with my shrink, who winds up the time trying to get me to accept that I’m just not good enough, anymore, is enough to make me want to crawl under a rock.

But I’m not going to do that. I’m going to buckle down and work all the harder. I’m going to follow through and make good on my promise. I’m going to do everything in my power — head injury and all — to live up to my potential.

And so I think about what this woman wrote, and I am comforted that at least one person in the world (other than my neuropsych) can see what we need, and is willing to offer it to us.

Muscle doesn’t build itself

I was talking to my therapist the other week, trying to describe to them the pain that I’m in on a regular basis. They were (understandably) concerned, and I found it difficult to relate the information objectively without alarming them.

I hate when I alarm people, simply by being and living the way I do. I’m not trying to shock them, but when folks become acquainted with my interior life, yes, it can be shocking.

Anyway, they recommended plenty of exercise (which I’m doing), and they suggested physical therapy might be useful.

Now, I can’t imagine that anyone is going to offer me physical therapy that can help my situation. What exercises could I possibly do, to address the myofascial all-over pain that wreaks havoc with my sanity? What specific routines could anyone recommend to ease the aching scream in my joints and the connecting points in my lower back, hips, knees, elbows… you name it…?

It’s not that I dispute it can be addresed — this pain, I mean — it’s just that I’m skeptical of the ability of others to prescribe a suitable solution for me. I’m just not that easy. Or easily explained. Besides, the pain tends to travel. Where is it today? Only today will tell.

What I do not dispute is the benefit of exercise. Daily. Routinely. As part of my waking-up ritual. I get up, and the first thing I do, is get on that exercise bike. Then I stretch. Then I lift. Not a lot of weight, but enough to notice it’s there. Enough to make my muscles burn in a good way, get my heart pumping and my skin sweating. Enough to remind me how far I’ve come, and how far I have to go.

One of the things my therapist mentioned was that physical therapy can help the knees. This I know. You help the knees — joints which can’t be helped directly — by strengthening the muscles around them. You don’t fix the joint. You fix what’s around it, what’s supporting it, what’s holding it together.

And it works. It took physical therapists years and years to figure that one out, and now we can all benefit.

From where I’m sitting, the rest of me benefits in the same way. The weak and crackly shoulders I have, the weak and crackly back I have, the weak and complaining legs I have — hips, knees, ankles — are all improved when I strengthen the muscles around them. Even my neck, which is a wreck, most of the time — pain and stiffness and the third vertebra from the top turning out to be pushed out of place every time I pay close attention to it — is helped by a good dose of concentrated lifting. In fact, when I was doing a lot of heavy weights, back about 10 years ago (and pretty much built of solid muscle, thank you very much), my neck always felt better when I did 70 lbs worth of shrugs.

You should have seen the looks on the faces of the other cubicle dwellers I worked out with, when I walked over and grabbed two 35-lb dumbells off the rack and started shrugging away. Priceless. But it worked like a charm. By the end of three sets of 12, my neck felt 200% better than it had before. And the benefits lasted for days. And the same was true of the rest of my body. I always felt so much better when I lifted regularly. And one of the things I resent losing the most, after my last fall in 2004, was the ability to go to the gym and work out without overwhelm or anxiety. I miss it. I still miss being able to go out and work out. But for now I’m doing what I can in the privacy of my own home.

I do what I can to build muscle. And it doesn’t get built on its own. It takes work and concentration and dedication to a greater cause. It takes persistence that defies logic and human resolve. It takes tenacity and a small dose of fear of what might happen if I don’t do it. Muscle doesn’t get built on its own. But when you do build it, it works for you.

Sometimes you gotta give a whole lot, before you can expect to get anything (no matter how small) in return.

I guess this is what I’m doing with my life, these days –giving a lot to get something back. Building up the proverbial muscle around the weak spots in my life — building up routines and strategies and techniques and tactics, to support the weak parts of my brain, the parts that got broken, the parts that won’t be fixed, no matter how determined I am. I’m re-routing around the burned-out shells of my old domains. I’m blazing trails through the jungle, to skirt the blown-up bridges in my neural network. I’m carving out new pathways in uncharted territory, and I’m moving what deadfall I can from the paths I must tread.

A blown-out knee, in and of itself, cannot be strengthened. It’s just bone and cartilage and connective sinews. But the muscle around it can — and should — be strengthened, and function can be restored to the leg and the body. A broken brain, in and of itself, may or may not heal. The neural connections that get shredded, are frayed for good, and nothing can return them to their original pristine state. But there are other ways of connecting disparate regions, and there are plenty of strategies and techniques available to get from Point A to Point Z in fine style.

I can sit around and bemoan my fate as an mtbi survivor with a whole truckload of residual issues… I can feel sorry for myself and worry about whether I’ll ever get back exactly the capabilities I had before… or I can take the focus off specifics and focus more fully on results — achieving the same sorts of things I did before, but now through different means.

A lot is possible, if we consider alternatives. But the alternatives won’t come out of the woodwork and make themselves known to us without our direct involvement. And we’ll never find out what does and does not work for us, if we sit around waiting for someone else to tell us what our next steps are.

It was a real struggle for me to get out of bed this morning, and I resented most of my workout with a begrudging resignation. But I did what needed to be done, and by the time I was finished, I felt ten times better than when I started. Day by day, bit by bit, I make headway and I find my way further down the path I wish to tread. Work doesn’t do itself. Workouts don’t do themselves. Muscle doesn’t build itself.

That’s all on me. And I’m glad of it.

Building my cognitive-behavioral exoskeleton

MTBI can do a lot of damage, in terms of shredding your existing skills and long-accustomed habits. It can really undermine your thinking and judgment, so that you never even realize you need to do things differently than you did before. And it requires that you force your brain (and sometimes body) to push harder and harder, even when every indication around (and inside) you is saying, “Let up… let up…”

This can be very confounding. I encounter — all the time — people who are keen on “taking it easy” and doing things “with ease and grace”. They think this is a sign of superior evolution. They think this is a sign of superior character, as though it means they are more “plugged in with the Universe”. They don’t want to have to expend the effort to get things done. They want Spirit/YHWH/God/Creator to do it for them. They don’t want to take a chance and extend themselves, because they are convinced that a Higher Power is more capable than they, and they believe they should just “get out of the way” and let that Higher Power take charge of their lives.

That may be fine for them, but that mindset drives me nuts. First of all, it absolves them of any responsibility for their actions. If things mess up, they can say it was “God’s will” or part of a “higher plan”. If things get really messed up, they can say they just need to be more “in tune with Spirit”.  I have a bunch of friends who are convinced that they are “channels” for Divine Inspiration, and that’s how they should live… just floating along on a tide of holy impulse. And their lives are a shambles. Objectively speaking, they are constantly marinating in a brine of their individual dramas and traumas. It’s just one thing after another, and all the while, they keep expecting Spirit/YHWH/God/Creator to fix all the messes they’ve helped create.

It’s very frustrating to watch this willful disregard of basic cause and effect, but I suppose everybody’s got their stuff.

Now, it’s one thing, if these people (some of whom are very dear to me) are content to live their lives that way, but when they expect me to do the same — and they judge me as being less “evolved” if I do things differently — it’s a little too much to take, sometimes. I don’t do well with living my life from a distance. I don’t do well with telling myself that I’m just floating along on the divine breeze, waiting for some wonderful opportunity to arise to save me from my own creations. I need to be involved in my own life. I need to be invested. I need to put some effort into my life. I need the exertion. It’s good for my spirit. It’s good for my morale. And it bolsters my self-esteem, as well.

Anyway, even if I wanted to just float along, I couldn’t. I’d sink like a rock. I’m not being hard on myself — this is my observation from years of experience. I can’t just ramble about, taking things as they come. I need structure and discipline to keep on track, to keep out of trouble, to keep my head on straight. I can’t just be open to inspiration and follow whatever impulse comes to mind. My mind is full of countless impulses, every hour of every day, and if I followed each and every one, I’d be so far out in left field, I’d never find my way back. I have had sufficient damage done to the fragile connections in my cerebral matter, that the routes that neural information takes have been permanently re-routed into the darkest woods and jungles of my brain. All those injuries over the years didn’t just wash out a few bridges — they blew them up. And they slashed and burned the jungle all around, and dug huge trenches across the neural byways I “should” be able to access.

As my diagnostic neuropsych says, “I am not neurologically intact.”

So that kind of disqualifies me for just winging it in my life. I tried for years to “go with the flow”, and I ended up flit-flitting about like a dried oak leaf on the wild October wind. I got nowhere. I can’t live like that, and I know it for sure, now that I’m intentionally trying to get myself in some kind of order. My brain is different. It has been formed differently than others. It has been formed differently than it was supposed to.

I can’t change that. But I can change how I do things. I can change how I think about things. I can change by facing up to basic facts. As in:

• My thinking process is not a fluid one, anymore. In fact, I’m not sure it ever was — for real, that is. I’ve consistently found that when I’ve been the most certain about things, was the time when I needed most to double-check.

• If I don’t extend myself to get where I’m going, I can end up sidelining myself with one minor failure after another. One by one, the screw-ups add up, and I end up just giving up, out of exhaustion and/or ex-/implosion… and I can end up even farther behind than when I started.

• It’s like nothing internal is working the way it’s supposed to, and the standard-issue ways of thinking and doing just don’t seem to hold up.

• My brain is different from other folks. It just is. It doesn’t have to be a BAD thing. It just is.

On bad days, it’s pretty easy for me to get down on myself. I feel broken and damaged and useless, some days — usually when I’m overtired and haven’t been taking care of myself. But on good days, I can see past all that wretchedness and just get on with it.

Part of my getting on with it is thinking about how we MTBI survivors can compensate for our difficulties… how we create and use tools to get ourselves back on track — and stay there. There are lots of people who have this kind of injury, and some of them/us figure out what tools work best for us, and we make a point of using them. These exterior tools act as supports (or substitutes) for our weakened internal systems. We use planners and notebooks and stickie notes. We use self-assessment forms and how-to books and motivational materials. We use prayer and reflection ane meditation and journaling. We use exercise and brain games. We use crossword puzzles and little daily challenges we come up with by ourselves.

Some of us — and I’m one such person — use our lives as our rehab. Not all of us can afford rehab (in terms of time or money), and not all of us can even get access to it (seeing as our injuries tend to be subtle and the folks who actually know what to do about them are few and far between). But we have one thing we can use to learn and live and learn some more — life. The school of hard knocks.

I use everything I encounter to further my recovery. I have to. I don’t want to be homeless. I don’t want to be stuck in underemployment. I don’t want to fade away to nothing. And that’s what could easily happen, if I let up. My friends who are into “ease and grace” don’t get this. But then, they’re embroiled in their own dramas, so they don’t really see what’s going on with me. Even my therapist encourages me to “take it easy” a lot more than I’m comfortable doing. (They’ve only known me for about seven months, so they don’t have a full appreciation of all the crap I have to deal with, so I’ll cut them a break.)

It stands to reason that others can’t tell what difficulties I have. After all, I’ve made it my personal mission to not let my injuries A) show to others, B) impact my ability to function in the present, and C) hold me back from my dreams. I may be unrealistic, and I may be just dreaming, but I’m going to hold to that, no matter what. I can’t let this stop me. None of it – the series of falls, the car accidents, the sports concussions, the attack… None of it is going to stop me, if I have anything to say about it. I just have to keep at it, till I find a way to work through/past/around my issues.

And to do that, I use tools. I keep notes. I write in my journal. I blog. I have even been able to read with comprehension for extended periods, lately, which was beyond my reach for a number of years. I keep lists of things I need to do. I come up with ways of jogging my memory. I play games that improve my thinking. I focus on doing good work, and doing well at the good work I’m involved in. I bring a tremendous amount of mindfulness to the things I care about, and I’m constantly looking for ways to improve. To someone with less restlessness and less nervous energy, it would be an exhausting prospect to life this way. But I have a seemingly endless stream of energy that emanates from a simmering sense of panic, and a constantly restless mind, so  I have to do something with it.

Some might recommend medication to take the edge off. But that, dear reader, would probably land me in hot water. Without my edge, I fade away to a blob of ineffectual whatever-ness.

I build myself tools. I use spreadsheets to track my progress. I downloaded the (free and incredibly helpful) Getting Things Done Wiki and installed it on my laptop to track my projects and make sure I don’t forget what I’m supposed to be working on. I have even built myself a little daily activity tracking tool that I use to see if any of my issues are getting in my way. It not only lets me track my issues, but it also helps me learn the database technologies I need to know for my professional work.

I am constantly thinking about where I’m at, what I’m doing, why I’m doing it. I am rarely at rest, and when I am, it is for the express purpose of regaining my strength so I can go back at my issues with all my might and deal directly with them. I am at times not the most organized with my self-rehab, but I’m making progress. And I track what I’m doing, to make sure I’m not getting too far afield. And I check in with my neuropsychs on a weekly basis.

I also use external props to keep me in line. I build exercise and nutrition into my daily routine, so I have no choice but do do them — if I break my routine, I’m lost. The anxiety level is just too high. I commit myself to meetings that require me to be in a certain place at a certain time, so I have to keep on schedule. I work a 9-5 job that forces me to be on-time and deliver what I promise. I surround myself with people who have very high standards, and I hold myself to them. As I go about my daily activities, I do it with the orientation of recovery. Rehabilitation. Life is full of rehab opportunities, if you take the time — and make the point — to notice.

In many ways, my external tool-making and structure-seeking is like being a hermit crab finding and using shells cast off by other creatures for their survival. I don’t have the kind of inner resources I’d like to keep myself on track, and I don’t have the innate ability/desire to adhere to the kinds of standards I know are essential for regular adult functioning. I’ve been trying, since I was a little kid, to be the kind of person I want to be, and it’s rarely turned out well when I was running on my own steam.

So, I put myself in external situations and engage in the kinds of activities that require me to stay on track and adhere to the kinds of standards I aspire to. I seek out the company of people who are where I want to be — or are on the same track that I want to be on. And I “make like them” — I do my utmost to match them, their behaviors, their activities. And it works. I do a damned good impression of the person I want to be — even when deep down inside, I’m having a hell of a time adhering to my own standards.

The gap between who I want to be/what I want to do with my life, and how I actually am and what I actually accomplish is, at times, a vast chasm. I have so many weak spots that feel utterly intractable — and I need to do something about them. So, I use the outside world to provide the impetus and stimulation I require to be the person I know I can be, and to accomplish the things I long to do. I use the supports I can get, and I use whatever tools I have on hand. I fashion the world around me in a way that supports my vision of who I can be and what I can accomplish in my life. and I just keep going, layering on more and more experiential “shellack” that supports my hopes and dreams and vision.

Dear reader, if you only knew how different my fondest hopes and most brightly burning dreams have been from my actual reality throughout the course of my 4 decades-plus on this earth, you would weep for days, maybe weeks. But this is not the time to cry. Not when I have within my reach the means by which to put myself on the track I long for. Not when I have the resolve to take my life to the next level. Not when I have — at long last — the information I need to understand my limitations and my cognitive-behavioral makeup. Not when I have the drive and desire to live life to the fullest, to love and grow and learn and … and …

But enough — the day is waiting, and I have things I must get done.

Peace, out

BB

Crossing the river(s) when the bridge is washed out

I’ve been thinking a lot about how my brain developed over the course of my life, wondering if/how my early mtbi’s affected me.

I have to say, it’s a bit confounding. It’s hard to see where the differences between me and everybody else are just regular personality differences, and which ones could be related to my falls and accidents and the assault when I was eight. I’ve actually remembered more incidents, over the past few months, most notably an incident when I was in daycare as (I believe) a 4-year-old.

I don’t remember much — just climbing up some stairs when some of the older kids encouraged me to come play… then running and jumping a lot… and then lying on the ground, looking up at an older kid looking down at me… and one of the other kids running downstairs to tell the lady who watched us all that something was wrong… the lady coming at me, looming over me, checking me over… yelling at the big kids… lots and lots of yelling. I’m not sure if my parents ever found out that something happened, but I remember trying to get upstairs a few more times, but the lady who ran the place wouldn’t let me, which really made me mad! It was fun playing with the big kids. I didn’t want to be stuck downstairs with the “little peepies”. I wanted to run around and play with the big kids.

I think that I may have been kept downstairs because I was small for my age. A couple of my younger siblings were actually bigger than me, till I was about 12 years old and I started to grow. I was a little kid, so I think the lady who kept me probably told me to stay downstairs so I would be safe.

Clearly, that didn’t work. If memory serves — and there’s the distinct possibility that it doesn’t. At least, in this case. I was reading a book, lately, about how the brain doesn’t always store the information it’s exposed to. It’s not like a tape recorder or digicam. It doesn’t just take in everything it’s shown. And sometimes it “records” things that never happened. So, I could be wrong about this — yet more fiction about my life…

But I’ve felt for a long, long time that something bad happened to me when I was little — in day care — and I always had this faint memory lurking in the back of my mind. It’s always just been there, I just never paid any attention to it. But then, the other week, all of a sudden, I got this big Wham! of a hit of the sequence of events. Like all of a sudden, they “clicked” with me, and I could see it all happening in front of me, like it was yesterday.

Hmmmm…

I also remember falling down the stairs more than once when I was a kid — one time in particular, I went down and slid the whole way down the carpeted stairs, banging my head on them, one at a time. Similar to my fall in 2004, which anniversary is coming up soon, but when I was little, I hit just about all the stairs on my way down. I can still remember the feeling of my head bouncing off the stairs — bang-bang-bang-bang-bang-bang-bang-bang-bang-bang — and the dull fog that enveloped me when I got to the bottom.

Man, oh, man…

Well, anyway, I know that I have a long history of head traumas — plenty of them subconcussive, as I was a very rambunctious kid with a lot of energy but not quite as much balance… I was always biting off more than I could chew, energy and coordination-wise. So, I fell down a lot, hit my head a lot, ran into things a lot. I got banged up, bounced back up, and got back in the game. I was game. Totally. Always up for more. Just try and hold me back…

Sometimes, people were able to, like the lady who watched me when I was little. But most of the time, they weren’t.

I showed them. I could do it. I’d be up and at ’em in no time. Sure! I could do it!

Now, I’m dealing with the after-effects of my (sub)concussive childhood. And I’m wondering if the impacts over the years had a lot to do with how my brain developed. I have to say, although I have some complaints (who doesn’t, tho?) I’m pretty pleased with how flexible my thinking is, and how well I can perform, by and large. I tested very high in my neuropsych evaluation – high 90’s, percentile-wise. In my moments of self-satisfaction, I imagine I’m a genius or a savant of some kind. (Ha – yeah, right – when I figure out how to keep my study clean and get stuff done when I’m supposed to and make it to the train on time, then I’ll qualify). I have to say, though, I don’t have that many of those kinds of self-satisfied, self-congratulatory moments (I should be so lucky), so I try to savor the ones I have.

But anyway, back to the washed out bridge thing. I’ve heard head injury described as a shearing of fragile connections in the brain — the fine connectors get disconnected, sheared, frayed, and generally disrupted. Kind of like the frayed strings in my sweatpants when I was a kid and I wore my sweats to shreds. And the routes that normally connect the different parts of the brain end up having to re-route to find other ways to connect. And that’s where the fatigue comes from. And the constant restlessness. And the agitation. The brain has to work all the harder to do basic, regular stuff. It can do it, it just takes more effort. The ways that are usually used, the pathways that everybody else seems to have intact, don’t quite work the same for us.

So, we mtbi survivors have to find other ways to get down the neural pathways of our lives. We have to find other routes, when the highways and byways of our brains are washed out by the storms that take us by surprise. The traffic of our brains doesn’t stop — not as long as there is life in us. It just keeps coming and coming and going and going, and when it comes to a place in the road where a bridge used to be, or a paved portion is mising from a huge-ass virtual sinkhole that opened up under it, or there’s a huge fallen tree getting in the way, we — the traffic in our brains — have to find a different way of getting where we need to go.

And I think about all the times when I was a kid, feeling like I was so far behind, just struggling to keep up with what was going on around me, hassling and hassling and hassling over every little detail… all the while seeming to be fine, because I learned pretty early on to be stoic and not let on when I was having trouble — and anyway, I was a tough little kid who didn’t take shit from anyone — and I think about my brain and how hard it was working to put two and two together…

Man, I have to hand it to myself for not going crazy. Granted, I was a strange kid who went off on horrible tantrums, beat up on my siblings, and had all sorts of weird habits, like rubbing through the satin edge of my blanket because the feel of the satin between my fingers was the only thing that would calm me down enough at night to get to sleep… I won’t go into the hiding in dark corners and talking to myself for hours on end and tearing out clumps of my hair — that’s a tale for another time. But all that disturbance aside, I actually came out okay. And nobody I know seems to have noticed there was something really amiss with me.

Of course they didn’t. I learned a long time ago, to hide what goes in with me. In fact, it wasn’t until I realized I was several hundred thousand dollars poorer than I’d been three years before, and I couldn’t explain to myself exactly why or how or when that had happened, that I noticed there was something amiss with me.

Crazy.

Anyway, something must have worked, because here I am, relatively normal, as far as anyone else can tell, testing well, for the most part, in my evaluations, and able to hold down a job and advance my career. Maybe I’m just fooling myself and I’m in for a rude awakening, when I find out that I’m not nearly as competent as everyone else seems to think I am. Maybe I’ll crash and burn. Maybe I’ll self-destruct. I don’t plan to, and I don’t think I will, but you never know.

All I know is, all these years, whether because I’ve kept busy or just kept moving, I’ve been able to re-route my brain around lots of obstacles, and find other ways of getting where I need to go. I may have had all those falls and all those injuries, but if anyone is a testament to neuroplasticity, I am. I’m serious. All the crap that’s gone down in my life, and miraculously my brain has managed to adapt, grow, change, and not show up horribly deformed on my MRI or register more than slight abnormalities on my EEG. For all I’ve been through, for all the crap that’s been done to me, and the wrecks I’ve survived, I’m doing okay.

Even if the bridge is washed out in places, there’s plenty of territory to discover while I’m bushwhacking my way through the underbrush. And if I’ve learned anything from this life, it’s that if you just keep going and use your good sense and you don’t go out of your way to do genuinely stupid stuff, you can find your way back to a beaten path of some kind. It might not be the road you left, and it might not be the road you were looking for. But sometimes a detour is the best thing for us.

Just keep going.