Archives for category: Brain Injury

I am having a very nice morning. I was musing about just how nice, and the feelings that gives me, and watching the sun rise, as I waited for my bus to work. The colors were amazing; crimson and scarlet and magenta and orange, pale streaks of mauve and a hint of lavender off to the edges, and in the foreground the contrasting darkness of the trees, bared branches of winter, reaching across those bold colors. I was struck by it and eagerly pulled out my camera (phone) to capture the amazing vista…but my camera will not photograph a sunrise. A little frustrating, but not a big deal. I keep hearing the phrase in my thoughts, though,  as I wait for the bus… “My camera will not photograph a sunrise.” I have the vague sense that as sentences go, it wants to tell me more, but I don’t find more there to know.

My brain injury is a frontal lobe injury. It effects memory and executive function, and likely has for the entirety of my adult life. I contemplate that a lot lately, and how that may have changed my experience of life, and how well/poorly I handle relationships and social interactions or make decisions. I have a lot to learn… having found out about my brain injury doesn’t change past behaviors or experiences, but it has serious potential to change my understanding of how my behaviors and experiences have evolved, what has driven my choices and decision-making, and why some things frustrate me so much (and I hope, also what I can do to improve on how I cope with those things).  I spent the solitary portion of my morning reading about memory over coffee.  I moved on to reading about executive functions while I rode in to work, and during my morning break, a short article about the frontal lobe. I read a lot. (Words work for me, mostly, although I have to read things more than once, take notes, cross reference bits I’m not sure about, and talk things through to gain an in depth understanding of a subject.) This morning I am a little awed at how easily the ‘issues’ I’ve had, challenges, bad behavior, and weirdness line up so cleanly with the information in my reading regarding frontal lobe damage and potential consequences to executive function and memory. I keep staring at the words and wondering why, if I can see these connections so easily here and now, no one looked at the list of shit I’ve been working through for so long and made the connection in the other direction? (You know… “Damn, considering X, Y, and Z, I have to wonder if you are suffering from some sort of damage that effects executive function?” I mean, seriously Medical Science, it actually seems that obvious in hindsight.)

It’s a lot to think about. I vacillate between feeling beat down to the point I can’t go on, overwhelmed to the point of giving up, and feeling like I do today; hopeful, and armed with new knowledge about how and why I am who I am, and where I can go from here with more appropriate tools.  I am hoping that gaining a deeper, more profound understanding of how my injury effects cognition, decision-making, and memory, that I can develop a better set of coping skills – more effective, more reliable, and less ‘guess work’. How do I change how I cope with my brain injury so that I am able to treat people consistently well? How do I make good decisions, and take care of me? How do I reduce the level of agitation and turmoil in my every day experience knowing now that much of it is born of simple frustration, fatigue, or challenges that are a by product of my injury? As is so often my experience, I have more questions than answers.

I need to paint – there are things I need to say that I don’t have words for; a sunrise, a memory I can’t quite remember, a portrait of a fracture I can’t see… I need to feel heard.

Choice is a tricky thing, and carries with it the characteristic of ‘accountability’, for each choice I make.  Education and coaching tell me things like ‘don’t blame the victim’ and give me reminders that events forced on me against my will are ‘not my fault’. That sounds easy enough, but it’s a complicated thing, because my own choices at any point after an event that ‘isn’t my fault’ are still entirely mine, and the accountability for them is also mine. Isn’t it? Does a brain injury, or child abuse, or domestic violence get me off the hook for being accountable for my own actions, my own choices? It doesn’t seem that it would…but are my choices themselves, or my ability to make them well, altered by my brain injury? My PTSD? My hormones? What does that mean for me, or for my relationships?

I’m staring at a lifetime of bad decision making, poor choices, failures to be accountable, and I am frustrated and tired and disappointed that at 49 I am not a better human being than I am. I spent the night in quiet contemplation, no real hope of sleep. I am tired, too tired for clear thinking, terrified to let my mind rest and risk losing a moment of understanding or any sort of step forward. My anxiety is completely out of control and I feel lost and very aware that my decision-making may be impaired… except… wasn’t it already?

Life lays out the choices. I have to see them, and make a choice. I’m choosing to do a better job of being a good human being, moment to moment. I expect that choice will have it’s own unique challenges, and may be more difficult than it sounds. (I hope that if I have to let go of what means most to me right now because of failures to be a better human being sooner, I will find being committed to treating myself and others well, and being honest and thoughtful with my choices in the future, will be enough to earn something that means as much as what I have cost myself through my bad choices in the past.)

We’re all having our own experience. The significance of what we do isn’t solely our own – someone else will experience it along with us, in their own context, understood from their unique perspective. Please help me make the world just a bit better than I have made it on my own, so far; treat someone who is hurting with compassion and understand that they are having their own experience, and that is both their truth and their world. Treat people well, especially the ones you love. Make good choices that meet your needs over time. I am pretty sure that if I successfully did those things every day, life would be wonderful.

Just in case you ever wonder if I have bad days, bad moments, insecurity or self doubt… you needn’t wonder.  And with the magic of modern medical science, I can tell you exactly nothing about whether my brain injury, my hormones, or my post traumatic stress bear the larger burden of my poor experience today. I can tell you, however, that exactly as with all my other bad days, bad moments, poor choices, tough times… every moment has one thing in common: me. Sometimes the choice very much seems to be between being…and… not being. It’s hard to read my own words on other days, from some other perspective, trying to make some other choice, written from some moment of hope or positive experience.

I probably cry more than a necessary amount, and lately I’ve been getting re-acqainted with despair (one of my least favorite emotions). My intellect tells me I can not count on these feelings for good decision making, but right now I doubt I can count on anything at all for good decision making. My experience feels permeated by doubt, soaked in fearfulness, wrapped in anxiety, and certainty that any solution to today will be forgotten in some tomorrow’s other problem. I feel worn down and regretful, tired and discouraged.  I lack hope.

What sucks is that broken or not, I have a decent brain that does its best to tell me something true and real. I know there are people without clean running water, without enough food to eat, without appropriate clothing to wear, without the certainty of the security of their home and person, or even entirely without a home.  So, ‘poor me‘, right? What right do I have to complain that my experience doesn’t feel good today? I don’t really know what to do with that.

Yesterday ended well (I think…), so why do I hurt so much today, over so much of yesterday? Why do I get hung up on what hurts? I’m tired. Brain tired. Heart tired. Soul tired. I do what I can… I don’t know how to make it feel like ‘enough’. There is no Rx for ‘happiness’, just me, some words, and time… the cycle of my thoughts and emotions today brings to mind the driver mired to the axles in mud, spinning his wheels, gas pedal to the floor, frustration and fury… over and over again, even though it didn’t work the first time. If I could just gain a few moments of calm, a few experiences of success, a few days of joy… maybe I could take another look at the challenges and find a solution that works… or not.

…Maybe I just need some sleep.

I still manage to be surprised how much really good quality sleep matters to my overall quality of life, and the enjoyment of my every day experience. Post traumatic stress can drive an intense cycle of poor sleep and anxiety; nightmares and sleep disturbances of a variety of sorts, decreasing both my ability to sleep, as well as the actual value of any sleep I am able to get. The anxiety gets worse, the longer I go without good sleep. The worse the anxiety is, the worse my sleep is. As the days go by I become more moody, more volatile, more prone to tears, less rational, less coordinated, less able to remember recent conversations or requests for task completion. The headaches become more frequent, and less responsive to treatment.  My emotional foundation begins to shift from one of relative calm and every day satisfaction to one of frustration, hostility and anger. I stop enjoying my relationships and begin to feel confrontational. I become negative, and my experiences begin to be filtered through the most negative possible interpretations and I make assumptions about the motives and intentions of others that are based on my own hostile and unhappy experience-of-the-moment. I hurt inside. I feel on edge and prone to easy tears.

…A few days of that, and I start feeling very disconnected and surreal, and unsure of the validity of my experiences. I get angrier. I feel unimportant and displaced. I feel resentful. If I can’t manage my behavior in spite of my internal experience, eventually I become a living breathing time bomb – a fight just waiting to happen. I can see it coming, in my most lucid moments, and feel helpless to prevent it, fix it, or make it stop.  It’s got to be very hard on people who love me, and who can’t see my internal experience, seeing  only reflections of it in my mood and demeanor, perhaps eventually manifesting in some horrific moment of emotional mistreatment that punishes all of us.

It’s hardest when PTSD intersects with hormonal changes (hello, menopause!), and the remaining consequences of a brain injury (good-bye childhood). Hard to know which element of my experience has it’s source with what particular challenge; is the moodiness of the moment my hormones, this time, or did that news article about that heinous rape set me on the path of a post traumatic stress freak out? Is my frustration and confusion the result of my PTSD being triggered by the neighbors yelling late at night, or the byproduct of cognitive limitations when I’m badly fatigued due to my brain injury? Do the answers to those questions matter? I know I sometimes feel like I’m juggling a number of heavy shards of glass, desperate to keep them all in the air without injury to myself or others, and it feels like more than I can bear.

Then I sleep. If I can manage my sleep in a reliably restful healthy way, everything else seems just a bit easier. The day starts better. My mood is calmer and more easily managed. I’m not overwhelmed by the little stuff.  Sleep is amazing.  (Note to Big Pharm: your pills and potions are of no value to me, the sleep they provide is not healthy, reliable or restful. Thanks, anyway, try again.)

I slept last night. Waking up was hard, but worthwhile, and the leisurely morning over a latte was a calm delight. The day feels good. The nightmares are gone in the chill gray winter morning. Over hours and days even the memories of the fear and pain will dissipate, and life will be joyful and pleasant for a while, until something else sets me off and I go through it all again. For now, I won’t think about it, until I see that fear, that panic, that fatigue in someone else’s eyes, out in the world… because one thing I do know is that I am not alone in this. There are a lot of people who hurt, who cry, who wake breathless and anxious in the night. I hope tonight they all get some sleep.