And in the end, we learn…

Some days you nail the holidays, sometimes the holidays nail you.

This trip to see family for Thanksgiving has been chock-full of lessons. I’m still sorting them out. Some of them, I may forget, by the time I get home, so I’ll write them down here, and come back to them later.

1. Having a perfect life is no guarantee of happiness.
2. The people who appear to be the most powerful and privileged are often suffering under terrible burdens. Sometimes it’s their very burdens that drive them to be more poweful and privileged than anyone else.
3. People who are innately talented and sharp, don’t always end up in the best circumstances. People who work-work-work their asses off can accomplish great things.
4. The people who seem to be the most wealthy, are often very poor in their own hearts.
5. It helps if you’re attractive and have a ready smile.
6. People are surprisingly judgmental of others who are simply different.
7. No matter where you look, there are people in some kind of need.
8. People dislike having to question their most fundamental beliefs. They’re a whole lot easier to get along with, if you pretend to agree with them — or at least don’t judge them.
9. Most people I know are very set in their ways about how women should act, and how men should act. Come to think of it, they’re very set in their ways about how “normal” people should act.
10. It usually pays off to keep your head about you and maintain a cool demeanor.
11. If you can’t do #10, step away. Give it a few minutes.
12. Getting enough sleep, drinking enough water, and eliminating regularly, will do wonders for your interpersonal relationships. It’s all about the flow…
13. Life is short. Be kind.
14. Sometimes, all it takes to get people back on track in mind and spirit is a long card game.
15. Winning a hand of cards is restorative. Losing gracefully, four hands in a row, is ennobling. Having a good laugh at yourself being a sore loser is good for everyone at the table.
16. Many things are awful. But they pass. It makes no sense to let awfulness get hold of you and trick you into thinking it will last forever.
17. Everything looks easier in hindsight.
18. All those old resentments I held against my in-laws for having so much more than me, and providing so much more to their kids, now pales compared to the peace I have in my life. They don’t have that peace. Their opulence is not saving them.
19. My “country hick” insecurities around my in-laws are still there. I still feel like an idiot when I am around them.
20. However, I have not understood the source of my insecurities, till recently. I thought, for years and years, that I was less intelligent than they, and I was too slow. As it turns out, by the time we reach their home, I am usually exhausted from driving, my sensory issues are out of control, after dealing with my own family, and I am literally not myself. My ears are ringing, I’m slowed down by fatigue, my noise and light and smell and touch sensitivities are all on HIGH ALERT, and I can’t understand what anyone is saying because the television is usually blaring. It’s a total onslaught of sensory overload, which my in-laws have to immerse themselves in, because they are so deeply unhappy as they follow all the rules, and they need something to dull their intense pain.Their coping mechanisms make it very difficult for me to function. It’s not me, that’s the problem, it’s the environment.
21. My in-laws are trapped in a “perfect” life, doing things they never really questioned, and their difficulties with that are simply too much for them to handle. They’ve decided to be happy, simply being successful and popular, everything looking good on the outside, but deep down inside, being so sad and lonely.
22. My in-laws cannot accommodate people who are different. They get disgusted with people who aren’t functioning”normally” due to invisible conditions. They don’t understand how people can have limits that are difficult to explain, and you don’t live up to their specific expectation of how you “should” function, they can get pretty mean-spirited. Their intentions are good, but their follow-through sucks.
23. My parents are surprisingly resigned to getting old and infirm. Well, my father is, anyway. He’s giving up and giving in… I read some things he wrote, and it makes me sad that he’s not fighting it more. He’s got a lot of years left in him, but he’s talking and thinking like he’s going to die before long. His handwriting has gotten noticeably worse over the past year. I think his diabetes is catching up with his brain function. And I’m literally not sure when/if I’m going to see him again.
24. My family is much better at accommodating individual needs and limitations, than my in-laws. My in-laws think a pill fixes everything, while my family believes community fixes everything. Small wonder. We’re all a bunch of farmland hayseeds, here, and there are plenty of “neurodiverse” people in our midst, due to brain injuries, congenital defects, poor medical care, etc. There are a LOT of “different” people here, so folks know how to handle them, for the most part. And the social rules here are so strict, everybody knows what they should be doing in any given situation, so it makes it possible for people to function, without thinking much about anything. It’s interesting.
25. Holidays are borderline hell for me. There is TOO MUCH ACTIVITY, and the expectations are too high. It’s TOO LOUD. Too many smells and changes in routine. I dread it. Every bit of it. Including all the parties and social activities. And the holidays are not easy for my spouse, either, who also has sensory issues but is less aware of them.
26. Both of us struggle terribly, at times, so it’s important for me to keep my act together, so only one of us is going off the rails at the same time.
27. I am so happy to be driving home today. It’s a full day’s drive, and we’re going to take our time. Get out and stretch. My left hip is killing me. Not enough exercise.
28. I’m glad we made this trip. And I’m even more glad to be going home.

And now, it’s time for a walk.  A long, long walk, before I get in the car and sit for 9 hours.

Gratitude List for the day after Thanksgiving

Good times…

Thanksgiving was an amazing time — a real joy and a success in so many little ways. Here’s my Top 10 gratitude list for what the day had to offer yesterday:

1. I woke up in time to get the turkey completely thawed before I put it in the oven. This was not a given, because I have a tendency to oversleep when I have to get up at a certain time. The turkey was still a little icy, the night before, and I knew I was going to need at least three hours to thaw it in a cold water bath before I could stuff it and put it in the oven. (Yes, for the record, I walk on the wild side and stuff my turkeys whenever I make them – it just tastes better, and I allow for extra time to roast.) But I actually woke up 30 minutes before I had to get up, which allowed me time to get going and get my head on straight before launching into the cooking. And by the time the stuffing was ready, the bird was too.
2. I managed to time everything out, almost exactly right. This was another thing that was not-a-given. Last year at Christmas time, I screwed up roasting a turkey and ended up needing an extra four hours to cook it. Yesterday, I had no such leeway; I had to have everything timed out exactly right, because we had to get on the road by a certain time. And I managed. I checked the clock frequently, and unlike other times, I didn’t just assume things would get done quickly — like prepping the stuffing and the veggies that went around the bird. I took extra time, which as it turned out, was what I needed from the start.
3. The friend who said they might come to dinner with us, did show up. This individual was recently diagnosed with cancer, and they are going through radiation and a variety of treatments, and they’ll be having surgery a few days before Christmas. It actually felt good to be able to just hang out with this friend, help them get their mind off their troubles, and just enjoy — with good food, good company, and a relaxing evening when they didn’t need to do anything.
4. Another friend who was going to be alone on Thanksgiving didn’t show up. That friend has been a real pain in the ass, over the past year, and while we do enjoy their company at times, they’re pretty erratic, so you never know how they’re going to be. They didn’t show, so there was no need to deal with their volatility.
5. We had Thanksgiving dinner “off the grid”. Well, technically it wasn’t completely off the grid, because there was electricity. But there was no cell phone signal, and we had to drive back into the woods to get to the cabin where we had dinner. It was really relaxing to not have Facebook and email and phones going all night long. What a change.
6. The drive out was beautiful. The weather was clear, it wasn’t doing anything obnoxious, and the countryside was lovely in that almost-winter way.
7. We took our time. We spent a fair amount of time prepping food when we got there, and then we took our time serving everything up and going around the table sharing what we were thankful for. We didn’t stress over food getting cold — our hearts were warm, and that’s what mattered. We really lingered over the food, too, pacing ourselves. And I have to say, that was the best Thanksgiving meal I’ve ever had, because I didn’t feel over-full and wiped out afterwards. I ate a lot, but I didn’t have that sick feeling I often get afterwards.
8. We ate like royalty.  Seriously. We had a lot of food, and it was good.  We all felt like kings and queens in the process — just so much really good food, without a lot of junk. Everybody in the group was on some sort of restricted diet, so all our food was not only squeaky clean and free of a ton of additives and other modern poisons, but also extremely good for us and tasty too.
9. We just hung out afterwards. We went for a walk out under the stars in the evening, and it was just amazing. We hung out talking about this and that. We watched little videotape snippets from “past lives”, we played music and sang, and we lay around the living room, playing with the dog and just chillin’. There was none of the rush and pressure to be a certain way or do certain things or meet anyone’s needs. We were just there to enjoy each others’ company and share a good meal.
10. We got home at an okay hour, and got everything put away. This is another thing that’s not a given for my spouse and me. Often, when we’ve been out late, we’ll just leave things till the morning. But for some reason last night, we were both motivated to take care of things and put up the dirty dishes, tuck the leftovers into decent containers (instead of just throwing it in the fridge), and get things squared away before going to bed. This made things a lot easier to wake up to, this morning. And for that, I am very grateful.

All in all, it was a banner day. I’ll write more later, because a number of really important things happened. But for now, let the record show that yesterday was one of the best Thanksgivings, ever.

Making room for more

And so another small chapter draws to a close, and a new one opens. Today I am finally going to start my vacation. The past few days have been pretty difficult for me, being off work notwithstanding. Since Friday night, we have been hosting a friends, in one capacity or another — there’s the friend who showed up on Friday night and has been staying with us at the vacation rental, whipping up drama along the way and generally being underfoot. There’s the other friends who came out for the evening last night and had dinner with us. And then there are the friends who are on the phone, calling and checking in and needing something when we get back next week.

It’s been a rough several days for me, with Saturday through yesterday (Tuesday) not giving me much rest or a break from constant stimulation. And it’s been driving me nuts. I am so exhausted, my spouse doesn’t seem to get how fundamentally fatigued I am — not just today, but in general — and that I need rest and quiet for more than an hour at a time. And for some reason they don’t get the idea of long-term sleep deficit.

How ironic. When they are just a little bit tired from an exciting day, they will sleep for 12 hours and not think about it. But when I’ve been going full tilt boogie for weeks on end, with maybe 5-6 hours of sleep a night, they still expect me to be part of their late-night plans.

Frankly, it makes me want to divorce them. I can’t live the rest of my life exhausted, and I feel like they have just used me up and are ready to throw me away. I was so tired the other morning, after being constantly pushed, and being woken up at 5:30 by them being up and about after staying up all night, I just snapped and flipped out at them in that way that makes them afraid of me, and has them “handling me with kid gloves” for days on end.

I just need a break. From them. From the people. From the distractions. From the social activities that give me no enjoyment, only drag me down and make me feel broken and inept.

I need some solitude. But at the same time, my spouse still needs me to help them do the most basic things, like put on their shoes and eat regular meals, because they either cannot reach their feet from back pain, or they cannot be bothered to keep on a regular schedule.

I don’t know. I don’t want to sit around bitching about situations that I have helped to create. I’ll have to find a way to work with this, if I want this marriage to work. For the most part, it does, but there are some things that are so critical as to be non-negotiable. At least, they should be. Like getting adequate sleep and recovery time.

The real problem is not with my spouse, however. The real problem is with me – not being clear about what I need to do and have to take care of myself, and not speaking up for myself. It just depresses the hell out of me when I have to fight for something as basic as a good night’s sleep. It seems like the sort of thing that should be self-evident and go without saying. That, and routine.

But my spouse doesn’t see it that way. From their perspective, my need for structure makes me a “Nazi” and it ruins their spontaneous fun. They like to just go with the flow… as though the world were made up of limitless time and money and resources. And if they don’t get what they want, then it’s a cruel crime being perpetrated on them to make them unhappy. Everything is personal with them. And they get very peeved very quickly… and they’ve very vocal about it, as well.

The thing is, I knew a lot of this when we first met. And back in the day, it wasn’t a problem. It was just one of the things that made them… them. And I loved them for it. Time change and people change, of course, and ever since my TBI in 2004, I have had less and less patience for that kind of behavior. Also, since commencing my recovery in 2007, I have really changed a lot, becoming less and less like them, seeing how a lot of our behavior has been really unhealthy and outright harmful.

And my tolerance has dropped through the floor.

Which is never good. Ultimately, as much as I carp and complain about the traits and qualities of others, the real issue is my tolerance level, and my ability to take care of myself without someone else thinking for me. It’s just part of being alive and being an adult, of course. And it’s not like I’m being held against my will in a horribly abusive situation.

Far from it. I just need to tweak a few things and more actively manage my own fatigue levels.

I need to keep myself from getting this tired, this delirious, this fragmented. Of course, the past several months have been sheer hell, and those types of conditions don’t happen all the time, so this is a bit of an anomaly. I know how to recover from this. And I will recover. It’s just a matter of managing it better.

And also making room for it, when it happens.

Some of the things that have made this time even more challenging than it has to be, are:

• I haven’t made sure that I got enough rest each and every day. I haven’t communicated clearly to everyone that I need to rest, when I need to rest, and I’ve pushed myself harder than I really should have.
• I haven’t worked out with my spouse the “terms” of my recovery. My exhaustion has sort of blind-sided them, when it’s come up, because they think about their own needs 99% of the time, and if I don’t tell them over and over what’s going on with me and what I need to do about it, they get very angry and resentful towards me.
• I haven’t made it clear to people just how exhausted I am — most of all my spouse. I’ve just been pushing myself on adrenaline, and at the same time my gears are pretty much stripped, I’m still exceeding the proverbial speed limit — in 2nd gear. To all appearances, I’m still functional. I can still drive. I can still walk a straight line. So, I should be fine, right? Not exactly. Judging by my appearances, my spouse has been very unclear about the problems I’m having, which has made it tough to communicate to them and manage their expectations and also carve out any type of relaxation time for my recovery.
• I am still pretty much in denial about living with a narcissistic borderline sociopath who lies and cheats and steals to get what they want out of life, and lives on the edge because that’s the only way they can every feel truly alive.

The last point is the main one, which makes things difficult. I just need to face up to the fact that I am married to and living with someone who has been deeply, deeply wounded in the past, and is still hobbled by their scars. I cannot even imagine the hell they went through as a child, even from the partial details I know (which is not everything, because they can’t remember a lot, themself). Their old wounds refuse to heal — in part because from what I can tell, they cannot bring themself to face the whole truth about their family situation. And they keep going in spite of it.

That last bit is what I need to focus on — the fact that they keep going, no matter what. Because as difficult as it can be for me to live with them, they actually do a lot of great work with people. The work they do with others to help them heal has literally saved lives. And there are countless people with a similar background, who have been helped — really restored to life — by their influence in their lives.

And this is what keeps me in this marriage, continuing on, despite the harm and pain and struggle. Because what comes out of this marriage is life-giving and restorative for many, many people far beyond the domain of our relationship. And as much as I complain about their negative traits, the positive traits are what help keep me alive. I wouldn’t still be here, if it weren’t the case. In fact, this blog is happening and helping people, because of the stability and support that comes out of the good parts of this marriage. My spouse doesn’t know I maintain this (as far as I know), but the support they offer and the help they provide does keep me going.

So, this marriage isn’t just about us, it’s about the work that we both do. And the stability of this marriage, for all its ups and downs, makes it possible for us both to do our work.

The main culprit in this dynamic is intolerance, judgement and fear. It’s me getting uptight when I hear them making up stories to make other people feel better, or to get their own way. It’s me focusing on the negatives instead of the positives, and making things much worse than need be. It’s me not taking care of myself, not accepting the fact that I need to sleep — a lot — and I need to be proactive in my management of my own issues. It’s me not including my spouse in my recovery and recruiting their help in getting me back on track.

Yes, they do have some serious mental health issues. But at the same time, they do an awful lot of good in the world and they help an awful lot of people on a regular basis.

Nothing is 100% good or 100% bad. There are up-sides and down-sides to everything. I just need to find the up-sides and stick with them.

Because ultimately, making room for the “bad stuff” helps the good stuff happen all the more.

 

And so the search for meaning begins

For Sandy Hook – Newtown, CT

The holidays are always a bitter-sweet time for me. It is supposed to be a time of joy and happiness and celebration, but I have always dreaded it. There’s something about the crush, the rush, the pressure to perform, the urgency that everyone is feeling to “get it right”, and the lingering sense that — yet again — I have not accomplished all I set out to, 11-1/2 months ago.

This year was looking like it was going to be a little different. I haven’t got any extra money, so the whole Christmas shopping thing has been a non-event for me. And there hasn’t been much snow at all, with the weather warmer than expected, and the snow that did fall rapidly melting away. I haven’t been in any sort of Christmas spirit at all. Far from it. But I was fine with that, because I’ve felt a lot of peace and equanimity, which I haven’t often felt at Christmas time.

Then some batsh*t crazy f*cker walks into an elementary school and kills 20 kids and 6 adults. Little kids. Babies. Gone. The shooter’s gone, too – along with his mother, whom he killed first. And last I heard, they were questioning his brother.

Shit. All day yesterday, it has been on my mind so much that I missed two turns on my way home and I spent 30 extra minutes driving to pick up supper I’d ordered. By the time I got home, dinner was a little cool. I didn’t break down and weep like many folks I know, but I did call home to tell my spouse how much I loved them. No matter how dulled we may be to the cruelties and anguish of this world, awful tragedies like this do alter our world view at least a little and force us to look at the world with fresh eyes.

Senseless. Awful beyond description. Horrifying.

Preventable?

How? Why?

… Why?

At times like this, our national instincts seem to respond in two ways — one, with unimaginable grief and horror… two, with clinical, distant reasoning that reaches conclusions that seem “logical” enough to the thinkers. On the one hand, there are those who plunge into grief and compassion… and pray. And then there are those who raise the banners of their crusade and charge forth into battle — to either stem the tide of semi-automatic assault weapons that keep showing up on the news, or to call for an even more aggressively armed society where people will think twice before they do something like this… again.

Before the shouting begins (although it already has), I need to take a breath and remember that I too will feel the eager pull of diving into the debate about gun control and the rights to keep and bear arms. I need to remember that I am tired and frustrated and in pain for these families, and that inclines me to say and do things that I wouldn’t otherwise do. I need to remember that the things that I often think are really good ideas, often… aren’t. And the things I want to say and do under such circumstances may not match the things I’d say and do under more ideal conditions.

I need to hold back and not strike out at others whose politics and cultural habits seem to either feed this scourge of shootings that has become so terribly commonplace, perpetuate it with apathy and denial, or alienate and polarize members of “the other side” so that no constructive debate can actually happen. My feelings on the issue of gun control, medication, mental illness, and personal/public security are many and varied, and I don’t fall easily into any one camp. I can easily burn through the friendships I have with a wide variety of people, over this whole thing… and I can’t afford to just alienate everyone on a passing (and passionate) whim.

So, I need to stop — just stop — and check myself, before I start doing and saying things that I can’t take back.

Ultimately, times like this — as senseless and as horrifying as they are — serve most to remind me just how much suffering there is in the world. Without getting into the reasons “why” or pointing fingers or laying blame — as we all love to do — I need to just remember that this kind of thing happens terribly often, all over the world. And whether the parents are in Newtown, Connecticut or in Kandahar Province or in Marseilles or in Chenpeng or in Baghdad, there are an awful lot of them who are losing their kids and parents and teachers to violence they would do anything to avoid, but cannot.

Times like this, I also need to remember how quickly we all tend to “apportion” our compassion. Closer to home, it’s easier to feel the burn and recognize the true horror. When the kids and teachers look like OUR kids and teachers… when they speak the same language, when they eat the same foods, keep the same schedule, vote for the same politicians, and could easily be related to us, it hits us so much harder when something this awful happens.

When the others are… well, other… it becomes a different story. Especially when the others are on the other side politically or geographically, or we’ve been told there is a Very Good Reason why they are being forced to suffer — sometimes in our names, with our tax dollars buying the ammo. And then there are those who are so remote from us, politically and socially and culturally and racially, who are undergoing such horrifying violence and destruction, it is literally impossible for us to get our heads around it, and the best we can do is try to protect ourselves and our kids and our families from having that happen to them.

And that’s all the suffering that’s on the surface. Deep beneath the careful veneer of everyday functioning, there are countless individuals who struggle daily with pain and anguish they neither understand nor can seem to overcome. There are countless individuals whose pain and suffering is well concealed, which cannot be guessed at by anyone nearby. The concealment can be deliberate — they can’t afford to let anyone know — or by default — either because others cannot fathom what it’s like, or they choose not to see. It could very well be that others choose not to see because their own inner pain is so profound that, to open that up is not an option… they literally feel like that might kill them.

And so they don’t open up to it. They stay closed. They get on with things. And they expect others to do the same.

I wish I could do just that — shut down and suck it up… and get on with it. I wish it were that easy. I wish I could just pretend away the headaches, the memory lapses, the distractability, the inner storms that rage at times, the frustrations, the sleeplessness, the stress, the nagging uncertainty about, well, everything. I wish all those things, compared to what happened yesterday in Connecticut, paled and didn’t matter or affect me. I wish I could dismiss it all, since compared to some, I have it really great.

But it’s not that easy. It’s not that simple. And while focusing on the pain of others does put things in perspective and make me incredibly grateful for what I have, I still have to deal with my own issues as I get on with my day. I’m not feeling well this morning. I haven’t felt well for most of this week. I’m fighting off a cold, with my ears filling up with fluid and my balance going haywire. I’m distracted, too, by all this anguish. Which makes me particularly vulnerable to more injury, if I’m not careful. I have to get back to some semblance of normal after a grueling couple of weeks, which is a prelude to an even more challenging 8 days before I leave for my marathon Christmas/New Years tour through five states and several families.

I just don’t feel right. And a whole lot of other people don’t either. We keep checking the news to understand “why”. We keep checking Facebook to see how others are dealing with this. We loop through question after question after question in our shuddering minds, unable to get our heads around it, haunted by the images of the parents and the kids, unable to keep from imagining what it must be like… even if it does us and them no good to do so. At some point, we just have to stop. Just stop. Take a break. Go back to bed. Or go shop. Run some errands. Just do something — anything — to get our heads off it. And all the while, Why… why…? Along with the constant running commentary in my head that pretends to “know why” as a form of logic-driven self-defense in the face of such loss.

… Why?

This world is hardly a simple, cut-and-dried sort of place, and this holiday season may or may not be even worth celebrating. Suffering is rampant on any given day, and this time of year is no exception. In Connecticut this Christmas, there will be toys that cannot be opened, and there will be pain so great it is unspeakable. There are just no words…

And around the world, this holiday season, there are countless other families who have lost babies… mothers… fathers… loved ones.  To war or fire or famine or flood or drought or disease or any number of other reasons. They are brown or yellow or black or red or white. Some of them are even in our own country, living on the fringes of our Great American Experiment, watching their loved ones and all their own hope fade before their very eyes, as so many look away.

This is what I bring with me this holiday season – not just the urge to “be happy” in the face of it all (although that is certainly part of it), but to see and know and understand the other side of happy — the pain and the suffering that so many, myself included, endure at this time. This is not to say that I am succumbing to the dark pull of the nebula of suffering that lurks at the edges of our personal universes, but to say that I can see and feel clearly how much pain and suffering there really is in the world. There are so many who are so alone, whether or not they are the only one in the room. There are so many who struggle and suffer in silence without recognition or support from others. There are so many who carry immense pain and anguish with them over invisible difficulties that they just can’t shake. And seeing and feeling that seems only right, in this time when there is — at the same time — so much light.

Because there is. On the 21st of December, the Winter Solstice will mark the expansion of daylight in our northern hemisphere. The darkening days (literally) will give way to longer hours of light, and a shorter night. This will not eradicate the night — hardly — only give us more light to see our way, for more hours of each day. And when I think of that, when I think of how the world turns and changes, and how many myriad times we have all been through the darkest of dark times and the brightest of bright times, I know that other side of things — the peace and the joy and the hope. Peace that passeth understanding. Joy unbounded. And hope beyond hope.

This is the ultimate irony of this season — that it is such an extremely hard time for many, and yet it has so much hope and promise in it. That 20 little children and adults who were trying to care for and protect them were gunned down, less than two weeks before Christmas is something that will overshadow this season for many years to come. I can’t imagine that a single Christmas will ever pass again without this being remembered.

And in the midst of this remembering, I have to also keep in mind, how many others are suffering — hidden or forgotten or both… how many others are struggling, for other reasons… how many others have lost hope and have no idea what comes next. The politicking and social debates and cultural clashes are bound to flare up soon, which to me adds an even greater pall over these events, even as I know that some sort of change is necessary. It’s not the debate that gets me — it’s the tone of it, the tenor, the divisiveness and the aggression. From each side towards the other. What I need to keep in mind, as those battles rage, is that the source of the frustration and the aggression and the divisiveness is nothing less than human nature — fueled by passion over Things That Matter.

It’s not the greatest comfort, but it is something.

In the end, though, I can’t afford to be felled by this experience. I was not in Connecticut. I do not know those families or those children. My own involvement is as limited with them, as it is with families in Ramallah who lose their kids, too. The fact that they are from my country doesn’t mean they are any more or less valuable than anyone else. ALL are valuable, and ALL matter, and enough with the apportioning of compassion to decide who matters, and who doesn’t.  The fact of this horrible shock doesn’t make the sufferings of others any less — the homeless vets struggling with PTSD and TBI on the bitterly cold streets of Chicago or Philadelphia… the families in the Detroit area who are being evicted because they cannot pay their rent… the farmer in South Dakota who lost his barn to fire… the housewife in Boise whose doctor can’t explain that nagging pain in her abdomen… the injured, the broken, the burned, the terminally ill… whether ambulatory or bedridden… whether about to be discharged to go home and recover, or to be moved to hospice to pass on during the Christmas season…. whether cut down in the flower of life, or struggling with lingering dementia in their final days/weeks/months/years/who-can-tell-how-long? For all the light that comes in, this is NOT an easy time for many.

And so it becomes all the more important to find light… to find something else to dwell on… not to banish the pain, but to find the strength to face it. We must find sources of strength and light, so that we can keep ourselves going in this seemingly impossible stretch of “holiday cheer”. We cannot run our best on fumes, and we cannot keep our strength up by dwelling only on darkness. We must seek more, we must find better. For the sake of facing What Is… no matter what.

Ultimately, it really is our choice, what we choose to do with these situations. We can allow ourselves to be pulled down into nothingness and give up hope entirely. Or we can see with different eyes and choose something different for ourselves. We can starve ourselves in grief… or stuff ourselves with sweets in denial… or we can eat sensibly and exercise and get on with doing what needs to be done. What others do… we have no control. What comes of our actions and reactions… that we do have some say in. And what we choose matters a great deal. To everyone around us.

But I have gone on too long… looking for meaning in all of this. Hoping for hope. Digging for clues. The earth cries out with the loss of each child, the ground soaked with young blood the world over. How we choose to approach it, how we decide to use that knowledge… it is up to you. So choose wisely.

And let there be Life, as well.

Is EVERYBODY in love with their therapist?

I checked my stats, and there are all these search engine searches in my stats results for about the past year having to do with people looking for info on being in love with their therapist.

The malady seems to be going around…

Personally, I’m highly suspect of therapists. This is because I know a lot of them, and I know for a fact that none of them are any more mentally healthy than most “unhealthy” people I know.

The fact that they are dispensing mental health care to others worries me a little bit. It truly does.

One thing I’m not overly fond of, is the tendency of therapists to simulate parents or significant others, so they can establish an intimate bond with their clients.

It seems downright creepy, in fact.  I suspect it happens more with opposite-sex situations — female client, male therapist — but maybe it happens the other way around, too.

Either way, the dynamics are just too weird. Therapists need to get their own lives and stop using their clients as pseudo-lovers. And clients probably need… well… less therapy. Maybe?

The whole business of transferrence and regression raises lots of red flags for me, but it seems to be quite widespread. It’s just not the right thing to do, in my opinion, especially considering that lots of therapists have their own screwed-up issues, and it’s a rare individual who can actually manage their intimacies. When you get into a position of such power and influence over another — which therapists often do — it opens the door to a whole world of hurt that is downright dangerous.

Of course, the therapists get to charge you money for it, and they can always walk away from the situation using their “professional” discretion. They’ve been taught how to ply a powerful trade, but very few clients actually know what they’re up to.

Until it’s too late. And then, well, it’s too late.

i think i’m in love with my therapist

Actually, I’m not, but I keep finding this search phrase in my stats, and I just have to comment on it. It comes up so often, that it surely must be a common theme in people’s lives.

Interestingly, in my research about pain and analgesic stress, I have come across some research and writing about brainwashing or mind control that may shed some light on this.

I am NOT saying that your therapist is trying to brainwash you or control your mind. But I may be able to shed some light on why this is such a common occurrence.

After all, someone falling in love with their therapist — or their therapist falling in love with them — is part of our cultural landscape. It is portrayed in movies, it’s discussed in books, and yes, people search the web about this issue — apparently, a lot.

Okay, at the risk of oversimplifying a pretty intricate, complex, and touchy subject, here’s how I understand the “love thing” happening in a psychotherapeutic context:

First off, as I understand it, regression is a process of “returning” to an earlier state of mind — kind of like accessing your inner child — so that you can tap into experiences and feelings at an earlier stage of your life and deal with previously traumatic or unsettling life events. There have been different views on regression over the generations — some conceive(d) of it as a defense mechanism that people use to avoid dealing with painful memories. Others see it as a necessary part of the psychotherapeutic process. Some therapists really pursue “getting in touch with the inner child” in order to heal old wounds. My own therapist is keen on me doing this — however, I’m largely resistant to it, for specific reasons, which will become evident below.

Now, regression has other “uses,” besides allowing someone to heal. It is also used in interrogation/torture circumstances, where a subject is resistant to “standard” interrogation techniques, and they need to be “broken down” in order to reveal the information sought. The CIA’s KUBARK Counterintelligence Interrogation manual states:

Obviously, many resistant subjects of counterintelligence interrogation cannot be brought to cooperation, or even to compliance, merely through pressures which they generate within themselves or through the unreinforced effect of the interrogation situation. Manipulative techniques – still keyed to the individual but brought to bear upon him from outside himself – then become necessary. It is a fundamental hypothesis of this handbook that these techniques, which can succeed even with highly resistant sources, are in essence methods of inducing regression of the personality to whatever earlier and weaker level is required for the dissolution of resistance and the inculcation of dependence. All of the techniques employed to break through an interrogation roadblock, the entire spectrum from simple isolation to hypnosis and narcosis, are essentially ways of speeding up the process of regression. As the interrogatee slips back from maturity toward a more infantile state, his learned or structured personality traits fall away in a reversed chronological order, so that the characteristics most recently acquired – which are also the characteristics drawn upon by the interrogatee in his own defense – are the first to go. As Gill and Brenman have pointed out, regression is basically a loss of autonomy. (13)

(bold emphasis added)

So, there are positive and not-so-positive uses of regression — both of them basically two sides of the same coin, as I understand it. The therapist and the interrogator are both urging the subject to return to an earlier point in their life, so that they can reveal the desired information. For the (principled and well-intentioned) therapist, it’s info about earlier events in life that are stopping the client from moving forward in life. For the interrogator, it’s info that’s politically or militarily privileged that they need to extract from the prisoner.

Now, one thing that happens in regression is that — after the “holdout” person has been on the hot seat (in therapy or in interrogation) for some time — they can form emotional attachments to the other person who’s questioning them. They can see them as a parental figure. Or they can form some other kind of emotional attachment to them… especially if that other person can offer (or at least seem to offer) relief or reassurance in the face of physical and psychic trauma.

A prisoner who has been beaten, waterboarded, threatened, put in solitary confinement, deprived of sensory input (like daylight or access to clocks) and separated from regular routine (like regular sleeping and eating times) may regress back to a semi-infantile state. And when an interrogator shows up (the good cop) and offers them an alternative to the bad cop torturers,
they can form a strong emotional bond with them — as a parental figure or some other emotionally significant personage.

From the KUBARK manual:

The skilled interrogator can save a great deal of time by understanding the emotional needs of the interrogates. Most people confronted by an official — and dimly powerful — representative of a foreign power will get down to cases much faster if made to feel, from the start, that they are being treated as individuals. So simple a matter as greeting an interrogatee by his name at the opening of the session establishes in his mind the comforting awareness that he is considered as a person, not a squeezable sponge. This is not to say that egotistic types should be allowed to bask at length in the warmth of individual recognition. But it is important to assuage the fear of denigration which afflicts many people when first interrogated by making it clear that the individuality of the interrogatee is recognized. With this common understanding established, the interrogation can move on to impersonal matters and will not later be thwarted or interrupted — or at least not as often — by irrelevant answers designed not to provide facts but to prove that the interrogatee is a respectable member of the human race.

Now, I’m not saying all therapists are like torturer interrogators, but on some level, they may employ interrogation-like techniques for the sake of getting to the bottom of deep-seated emotional issues. And just as their techniques may mirror those of interrogators in some ways, the response of a regressed client can mirror the response of a prisoner who has been subjected to torture — they may emotionally attach to someone who offers them relief from their physical and psychic pain (Note: physical and psychic pain are sometimes all but indistinguishable, but that discussion requires another extended post).

It’s not that the therapist is necessarily trying to take advantage of their client (though some do, and I’ve encountered therapists like that). It’s just that the human system responds in certain ways to certain stimuli and input, so falling in love with your therapist, especially when you’re in the midst of some very intense work and you’re ultra-vulnerable, may be the most natural thing in the world.

However, I have to say that depending on the therapist, this might not be such a healthy thing. It all depends on the person you’re working with. If you know they can be trusted — not “if you trust them” (which is an emotional and subjective approach), but if you know they can be trusted (which is more of a logical, objective consideration) — then you may be safe enough regressing with them. But if you have any concerns about the ethics of your therapist and their motives, you may want to avoid regressing back to a vulnerable state with them… and start looking for another therapist.

I’ve known people who fell in love with their therapists — plenty of people do — and trust me, it wasn’t always pretty.

Regression and its uses in interrogation… just something to keep in mind.

Have a happy day 😉

My answer to (almost) everything: Just Keep Going!

Okay, so I had a good session with my therapist, earlier today, and I did get to recount my long weekend in a way that sounded cogent to me. And I got to tell about how I have patched up a somewhat rocky relationship from many years of fits and starts and faux pas moments. I was actually able to carry on a conversation with someone who used to be really central to my life, but who had drifted away from me, over the course of the years, when I was being injured and not dealing with my symptoms at all.

But on Friday night, I was able to call this person and have an hour-long conversation about what my life has been like for the last two decades. And by the time we were done talking, this person was not trying to get off the phone and run like hell from me, the way they had in the past. I actually heard them saying, “It’s too bad you don’t have time to get together and have coffee tomorrow.”

Wonders really do never cease.

It seems that my newfound understanding of my limitations has actually allowed me to fix what was wrong with key elements of this connection I had with this person. Over the years, not knowing how prone I was to just go on and on and on, I would ramble and let myself get all tangled up in nonsensical chatter… or I would send letters that ranged and roamed and didn’t really have a point. Or I would send emails that were not only rambling, but also got a little too intimate at times — a little too close — to the point where (when I took a long, hard look at myself) I sounded more like a stalker, than an old friend.

I was actually creeping myself out there, for a while.

But then they got back in touch — I guess out of curiosity, just to see how crazy I was, this time. But this time, I wasn’t crazy. I had the awareness of being brain-injured… brain-damaged… and I was aware of the fact that I could very easily veer off course and become that old me that was so annoying and trying and alienating and freaky. I was conscious of how I talked, how I interacted, I kept the conversation on the phone going, I didn’t rush things, and I was able to stop and catch my breath and listen for clues about what the other person was talking about.

I actually did really well.

And the conversation we had was interesting and interactive. I was able to edit myself and keep myself on-topic. That’s something totally new.

Which goes to show that if I’m aware of my limitations and I develop coping strategies to deal with them, then I can be even more functional in my daily life, than if I pretend there’s nothing wrong — like I did for years. (Well, I can’t say I was necessarily pretending — I just didn’t have the awareness that I have now.)

So, if nothing else, this Thanksgiving gave me one more thing to be grateful for — the return of an old friend and a connection I have always valued.

Considering how few real friends I really have, that is priceless.

So, the next time I decide I’m going to give up… I’ll have to remind myself — Don’t. No matter how bad things may feel, no matter how bad my pain may be, no matter how confused and confounded I may seem at times, I still have my little victories, and as long as I don’t quit, don’t give up, don’t hang up the gloves and keep on fighting, I still have a chance at winning.

Better today… of pain and ptsd

Well, I got to bed by 10:00 last night, and I was able to sleep through till 6:30 or so, which is an improvement over what I’d been able to do over the last weeks.

I’ve been kept up by anxiety over what my neuropsych evaluation is going to reveal — that’s coming up this week — me being terribly afraid that I had given wrong information or I just couldn’t think my way through certain things… I’ve been second-guessing myself for days and days, wondering if I answered as accurately as possible… of if maybe I’m more crazy than head-injured… or that my head injuries have led to some sort of mental illness that’s invisible to me because of my anosognosia… or maybe I’m just on this wild goose-chase that will end up being all for nothing.

I try to be level-headed and logical about this and remind myself that my neurpsych has been doing this for many years, and they have certainly seen worse cases than me. But still, not being able to be a full participant in the process and being a subject of examination and enquiry… well, that makes me uncomfortable, and even if I do trust the doctor. I just don’t know what to expect, and I cannot manage my wild rang of emotions, if I don’t know what I’m managing for.

Fortunately, I do feel better this a.m. — not so much pain, not so much tenderness. I got a bit of a massage yesterday p.m., and it really, really helped. Even if it was painful at times — I don’t care. Short-term pain for long-term benefits. I’ll take the pain in the short-term, if it will help me feel this much better in the a.m.

I still have discomfort when I move – especially in my hips and lower back. And my elbows are still sore. And my thighs are still tender. But I can push up my sleeves, so they’re not chafing my wrists, and my body isn’t screaming so loud I can’t hear myself think.

I tried the Arnica yesterday. i can’t say I noticed an immediate effect, but I’m going to keep trying it — 4 tablets dissolved under my tongue 4 times a day, for a few days. I’m going to take it again after I finish my cup of coffee. (I’ve heard that you have to be careful taking homeopathic remedies when you’re eating or drinking. It’s my understanding that the remedy needs to be the only think you can taste… or I could be wrong.) I’m not off caffeine entirely — that would be too much. But I am cutting back. I only had one cup yesterday, which I think helped me sleep.

This arnica experiment is definitely going to be totally screwed up by my other changes I’m making. In a “real” test, the only thing I would change would be taking the arnica, not getting more sleep or changing my diet or getting more exercise. But dude, I’m in pain, and I need it to stop, so I can get on with my life.

Thinking about the role that pain has played in my life, I think there’s a definite trauma aspect to it. I have friends who specialize in treating trauma, both in medical and psychological environments, and they talk a lot about it. They also love to tell me I’m a “trauma survivor” — having had a whole bunch of accidents that left me progressively more impaired, as the years went on, along with the social, interpersonal, and physical after-effects of my impairments that haven’t helped me get by in the world.

And since I have a history of trauma — physical, as well as psychological — I have to admit I do show signs of PTSD.

Over at Wikipedia — http://en.wikipedia.org/wiki/Posttraumatic_stress_disorder — I found this (note: my comments are in italics):

The diagnostic criteria for PTSD, per the Diagnostic and Statistical Manual of Mental Disorders IV (Text Revision) (DSM-IV-TR), may be summarized as:[1]

A. Exposure to a traumatic event – multiple head injuries over the years, along with other accidents and fights/clashes with people that threatened my safety
B. Persistent reexperience (e.g. flashbacks, nightmares) – I’ve had lots of them over the years… where do I begin?
C. Persistent avoidance of stimuli associated with the trauma (e.g. inability to talk about things even related to the experience, avoidance of things and discussions that trigger flashbacks and reexperiencing symptoms fear of losing control) – some things I just will not talk about… you can pump me for details till the cows come home, but I’m not talking about certain things that have happened to me, unless I can know that it’s not going to ruin my life, if I do
D. Persistent symptoms of increased arousal (e.g. difficulty falling or staying asleep, anger and hypervigilance) – well, yuh, I’ve had more restless nights and being jolted awake at 3 a.m. with my heart racing and my body soaked in sweat… than I care to think about
E. Duration of symptoms more than 1 month – try months and months… sometimes years later, after the initial event is over
F. Significant impairment in social, occupational, or other important areas of functioning (e.g. problems with work and relationships.) – just ask my friends, family, and co-workers… just ask my 17 former employers

Notably, criterion A (the “stressor”) consists of two parts, both of which must apply for a diagnosis of PTSD. The first (A1) requires that “the person experienced, witnessed, or was confronted with an event or events that involved actual or threatened death or serious injury, or a threat to the physical integrity of self or others.” The second (A2) requires that “the person’s response involved intense fear, helplessness, or horror.” The DSM-IV-TR criterion differs substantially from the previous DSM-III-R stressor criterion, which specified the traumatic event should be of a type that would cause “significant symptoms of distress in almost anyone,” and that the event was “outside the range of usual human experience.” Since the introduction of DSM-IV, the number of possible PTSD traumas has increased and one study suggests that the increase is around 50%.[48] Various scales exist to measure the severity and frequency of PTSD symptoms.[49][50]

Now, this is all pretty thick stuff for me to get into. Personally, I don’t feel like I can take on much more to process, other than just dealing with my own pain… but I have to say, the pain is worse, when I’m feeling the after-effects of some past trauma. When I’m dealing with people who have really physically hurt me in the past — like adults who used to really knock me around — or I’m interacting with people whom I have hurt in the past because of my bad behavior and poor social integration.

When I think back on being a kid, I remember a lot of pain, both from internal sources and from without. My pain issues date back to fairly early childhood – I was not a very limber kid, and I had a lot of difficulty doing things that other kids could just do, like touching toes and climbing and jumping and doing cartwheels and such. I had a lot of trouble with my balance, and I couldn’t do a somersault until I was about 5 or 6. I can’t remember exactly how old I was, but I do remember the day I did my first “real” somersault — I didn’t fall off to the side, but was actually able to just roll right over and keep my balance. When I tried to stretch and extend, like other kids could, it was very painful for me. But I kept trying, and I just forced myself to stretch and extend… until the pain was too much, and I had to stop… which was usually far short of where I wanted to be.

I wanted so much to participate, to take part, to be a part of what was going on. I hated being on the outside, not able to do what other kids could as easily as they could, so I pushed myself — very hard. There was a lot of pain, but that was just the price I paid for being able to be a part of what was going on.

The other source of pain was from the outside. I was raised by parents who didn’t know how to relate to me. I tended to get over-stressed and over-extended with all the stimuli going on around me (including the pain), and they tended to discipline me. Grab me. Jerk me around. Take hold of my arms and pull me to where I was supposed to be. It was excruciating, and it was shocking. My memories of childhood are full of instances where my mom would grab me out of the blue — I wasn’t following what was going on, and I didn’t understand what she wanted me to do, so she would yell and/or grab me and pull/push me to where I was supposed to be. With my sensitivities, it was like just being pounded out of the blue, time and time again. I could never prepare for it, I could never brace for it. And I didn’t really “get” why it was happening, a lot of the time.

I wasn’t able to explain my “bad” behavior to them, and they didn’t seem much interested in finding out if I was having problems, or if I was just a bad kid who needed discipline. I think, because of their religious orientation and the role that my very religious grandparents had in our lives, they “went with” the religious explanation that I was a “sinner” and that “sin” or the “devil” had taken hold in my life, so I needed to be disciplined to stop my acting out.

So, they did. I got called a lot of names, when I was little, because I couldn’t keep up cognitively or physically — spaz, space cadet, bugger, doofus, spastic… that was my dad. My mom preferred to call me pathetic or disgusting or asinine (asinine was her favorite). I was actually shielded from their wrath a lot, because I didn’t understand till I was 7 or 8 or 9 (?) that they were actually talking to/about me. I thought they were just saying what they were saying into the blue. It didn’t occur to me, till I had been in school for a few years, and other kids were calling me names, that my mom and dad were calling me names, too.

Actually, come to think of it, it didn’t occur to me that my mom was calling me names, till a few years ago. Somehow, being mistreated by my mother is a lot harder to take than being mistreated by my dad.

Even when they showed affection, my family’s hugs and touches were extremely painful. My family — for whatever reason — loves to give big, hard hugs, and it hurts like crazy when they do! I don’t know what it is that makes them think it’s okay to just throw their arms around someone and squeeze so hard… or maybe they can’t really feel it, themselves, so they have to have hard hugs and forceful contact, to even tell someone is there. My grandparents were hard huggers, and my mom was/is, too. She loves to reach out and grab people as a sign of affection, which is a double-whammy — I don’t want to shut her out, but I cannot take the force of her contact. Just over Thanksgiving, she was walking by me, and she reached out and grabbed my arm as a sign of affection. And when I was getting ready to drive home, with the weather being as rainy as it was, she got scared for my safety and she just threw herself at me and hugged me really hard, which really hurt.

I still haven’t figured out how to tell people that when they touch me, sometimes it feels like they’re pounding on me. It’s embarrassing, it’s troubling, and I dread people knowing just how much pain they’ve caused me. Being in pain is bad enough, but then “spreading it around” by telling others about it — and telling them there’s nothing they can really do, but keep their distance — is just awful. I’ve done it before, and it’s awful. Awful to be pushed out to the margins. Awful to be forced to push people away. Awful to have to hold them at arm’s length and never let them close, without pain.

Thinking about growing up in constant pain, raised by people who repeatedly hurt me terribly, is definitely not easy to take. I have to tell myself my parents weren’t fully aware of the effect that their behavior was having on me, and that if they’d known what it was like for me when they grabbed me or hugged me, they would not have done it. I have to tell myself that they had no idea, that they were innocent. Believing that my parents would intentionally harm me, is more than I can process right now.

But it’s probably worsening my pain, to hold back from that belief. Now that I’ve been away from them for a whole day, I’m starting to relax, and I’m starting to be able to adddress my pain. I think when I was in the midst of it all, I was so shut down that even if I’d been in terrible pain — which I may have been — I wasn’t aware of it. I was up in my head. I was too busy talking. I was too busy trying to stay out of arm’s reach of both my parents.

I rarely notice until days after the fact, but when I am in the midst of family at holiday/Thanksgiving time, I hold as still as possible for long periods of time — both as an attempt to not draw attention to myself, and to keep myself from acting out when I get stressed. When I’m stressed, my brain stops working really fluidly, and I end up needing to take more time to explain myself. But when things are all wild and woolly, like at my parents’ place at Thanksgiving, I don’t have the time to fully explain myself, and I end up hurting people’s feelings from a poorly told joke, or an attempt to josh around with others, and then I start flashing back to all the other times I said/did things that people took the wrong way.

Yes, I hold very, very still during the holidays… both for my own protection and that of others.

And it probably doesn’t help my pain — because of my rigidity and my disconnection from my body.

And it doesn’t help my PTSD. Because I go back to that place where I’m on auto-pilot, where I’m just keeping my head down and keeping moving, where I’m just doing what’s in front of me, and not aware of whether or not I’m hungry or tired or anxious or stressed. And when I’m not aware, when I’m just soldiering through (as I do so well!), I tend to push myself even harder — do more stuff, take on more tasks, be more manic, be more forceful, be harder on myself and add more things to my to-do list — and that cuts in on my sleep, it cuts in on my rest, it cuts in on my physical well-being.

And I have pain. Lots of it. Tearing, ripping, screaming, shooting, chafing, burning, crazy-making pain.

So, in a way, the pain is like my barometer for how I’m doing, stress-wise. It tells me if old stuff is coming up that’s making me do things and make choices that aren’t healthy. It tells me if I’m falling back on old patterns, letting my fears and anxieties and old hurts stop me from living my life. It tells me if I’m tired — and it tells me that I’ve let myself get over-fatigued and ill-nourished.

It’s an objective measurement of how I’m doing psychologically and physically. And it gives me a great “excuse” (in my mind, when a simple reason won’t suffice) to step back and cut out all the shit I’ve got on my plate… focus in, take care of basics, talk over my issues with my therapist, and make sure I get plenty of rest. It tells me, loud and clear and in no uncertain terms, that I’m totally f’ed up, and I need to stop doing what I’ve been doing, and just take a break. Take care of myself. Have a long, hot shower. Take care of myself. Now.

Unless I do, I’m going to stay in pain. That’s just the way it is. And it’s my choice.

In a way, pain is my friend — but only because it’s my mortal enemy.

Back from the holidays, back to work

Of course, the holidays are really just beginning, but the holiday travel piece is over.

I will not be traveling over the December holidays… it’s just too much energy, too much exertion, and it completely overwhelms me far past the level that I’m comfortable with.

Once upon a time, it was fine and dandy for me to constantly push the envelope… travel throughout November and December… push myself to do-do-do for the holidays, doing all the shopping, all the driving, all the travel, all the social maneuvering… just putting my head down and soldiering through, regardless of the toll it took on me.

No more. This year, I am seriously taking care of myself. I did my family duty for Thanksgiving, and it really tested me in some scary ways. Ways that I don’t care to repeat in another month or so. I was able to get periodic naps in, and (for the most part) I was able to watch what I was eating and doing and saying and thinking, so that I didn’t get too far out ahead of myself. But the few times where I did lose track of what I was doing, how much I was sleeping, what I was eating… I melted down in some sad and sometimes scary ways.

One of the times, I was visiting an old friend who had company drop in to visit for a little while, and the shift to lots of social interaction really threw me off and triggered a major meltdown after they left. I had anticipated — and desperately needed — a quiet evening with this person, just catching up about what’s been going on in my life for last couple of years, but I was unexpectedly thrust into the midst of a lot of very happy, very gregarious people who had no idea how loud they were, and had no comprehension of what the effect of their noise was on my sleep-deprived head. I held it together for the hour or so they were there — I didn’t feel I had the right to chase them away, and I didn’t want to spoil their fun, just because I was having auditory processing issues. But when they left, I just fell apart — tried to hold it together and have a pleasant conversation, but ended up in tears.

Feeling damaged. Feeling deficient. Feeling unfit to be around people. Because I just couldn’t follow what they were saying, I was so tired, so overwhelmed, so unprepared. I hate it when I get like that — it ruins the simplest of times, the happiest of times, and I have a hell of a time dealing with the fact that I’m affected this way.

Fortunately, this friend of mine has seen a wide range of human behavior in the world, and they’re not easily intimidated — especially by me, who they know better than I know myself, in some ways. They have an uncanny ability to discern who is really inside the person they’re interacting with, and when I broke down in mortifying uncontrollable tears and couldn’t talk for half an hour, they let me be, rubbed my back, brought me a glass of water and a blanket to wrap around me, and just let me be, till I got my bearings and could be human again.

The other time I started to lose it, was when I was behind the wheel of my car, which was not good. It was raining and dark, and I was having a hell of a time seeing my way through the night. On top of it, I made some poor choices about how to avoid the parking-lot traffic on the freeway, and I ended up taking long back roads that didn’t have a whole lot of human presence nearby. A little scary… not terribly frightening, but what might have happened is haunting me a little today.

I was okay company in the car, until near the end of the trip, when my traveling companion started to talk to me, and I started to flip out — yelling and saying unkind things and generally being a really difficult person to deal with. It was a really shitty way to end up what was otherwise a mostly okay Thanksgiving, and I really regret having said the things I did. It’s like these words were coming out of my mouth, and I couldn’t stop them. I think the talking got to me — the auditory processing stuff, again.

Thankfully, as I drove through the night being a total asshole, I was able to dimly perceive that I was in no condition to be indulging the rage that was coming up in me… that I was operating on diminished resources, to begin with, and I needed to just shut the hell up, which I did.

The last half hour of the trip was no friggin’ fun, and my outburst(s) made a taxing time even more troubling. But at least I was able to shut up, eventually. And my traveling companion may yet forgive me for saying what I said before I dropped them at their place.

Just one more thing I need to make amends for. Thankfully — and I mean thankfully!!! — I am NOT traveling any more for the next six months, at least, I will not be dealing with family up close and personal for at least another 6-9 months, and I will have plenty of opportunities to clean up my act with regard to the person I roasted the other night.

Plus, I’ll be getting my neuropsych results back in the next month, so I’ll be able to explain myself better… and take steps to:

A) Fix what can be fixed

B) Compensate for what can’t be turned around

C) Avoid like the plague those things that cannot at all be helped

If nothing else, there’s always tomorrow, always another lesson to learn, always another chance to make good on the promise I have, as well as more chances to make up for the parts of me that are not cooperating the way I and/or others want/need them to behave.

Onward and upward…

A reply to a comment that took on a life of its own

I had started to respond to NEDream’s comment and the reply really took off… I’m incredibly tired, these days, but I did want to post this…

NEDream, I hear you… There is a lot I would love to be able to do, but given that I’m coming from a place that’s impaired — and often in ways I don’t even realize — it’s hard to know just what to do. I’d love to be able to go on lecture tours, meet with professional caregivers who know far too little about tbi, consult with best-practices people, and generally contribute to the widening knowledgebase for professionals — the front-line care providers and experts in these extreme health matters. But I tend to run out of steam (my high energy notwithstanding). Plus, I’m dealing with additional health issues that had escaped me as being real problems, also I think in part due to my cognitive issues.

How ironic, after all these years of being beaten up by others for being “less capable” because of injuries and deficits I myself could not detect, now I’m able to detect my deficits and identify my injuries, but the people who would/could help me are totally thrown off by my ability to deal… Catch 22, if ever I heard one. And it makes me absolutely NUTS to think of how much good I (and others) might be able to do others like us — I know I would have benefitted greatly from someone like me crossing my path about 10 years ago!!! — yet the experts and people who are guarding the castle of acute health care are barring us from crossing the threshold because, ironically, we’ve been injured. That’s what it feels like, anyway. I might be totally off-base about this, but whenever I talk to a professional psychologist or neurologist or neuropsychologist, I get the sense that they are looking down their nose at me… even though I hold in my possession a vast amount of experience and knowledge that could probably help them become better practitioners… if only they’d let me help them. I do want to help. But I get the impression, I’m not “allowed”. After all, I am brain-injured 😉

I too am really torn about what to do to help. I think that people like you and I are extremely well-placed for this time in history. Not only do we have access to technologies that put our words in front of total strangers and people who may be looking for information we have, but we also have the kinds of experiences that people used to NEVER (and I mean NEVER) talk about. I should know — I came from that world. And I’ve been dealing with this –crap– complicated situation for most of my 43 years. My family was so ashamed of me, they didn’t understand why I did the things I did, why I couldn’t figure stuff out as quickly as others, why I would say one thing and act like I was totally right, when I was totally wrong… why I couldn’t finish any chores they had me do, and I would always miss some detail — like a corner of the hedge I forgot to trim or a portion of the yard I forgot to mow or the leaves I raked into a pile, but couldn’t manage to haul away to the compost heap. They just didn’t understand, they thought — I guess — that it was God’s will that I suffer like that, and I was just their cross to bear. They were grateful to have other children who didn’t have all the issues I did, but I was always there to remind them that something was amiss… even if they didn’t understand what that something was, or why it was.

Now people are talking about this… and I think that as people look back, they will see that head trauma is much more a part of human experience, than we thought, before. My father-in-law was in WWII (he passed away over 10 years ago), and from the stories I heard about how he was when my spouse was growing up, it sounds like he totally had a TBI — if not several — when he was at war, if not earlier in life. He was always a real fighter — always getting in brawls, beating on other guys and getting beaten on — and the stories I heard about his temper, his violent outbursts, his need for silence at the end of a long day, his sensitivities, his quietness that would suddenly explode, his troubles with drugs and alcohol, and his constant remorse over what he’d done wrong in life… well, it sounds pretty familiar to me, and I suspect that he had sustained TBI’s throughout his life that colored his experience. But back then, when he was active as an adult, men were supposed to be the strong, silent types, not show any emotion, not betray anything about what was going on inside him. I think back now, and I can totally see how he just suffered and suffered and suffered in silence, because he — and everyone else — didn’t understand the nature of his injuries.

But as I was saying — and I’ll finish this thought sooner or later 😉 — now people are talking about TBI and they’re starting to lobby for assistance. They’re starting to raise awareness. They’re advocating and agitating, especially on the internet. Now that we have the web at our disposal, we can get the word out there about our experiences. And even though we may be “pedestrians” and “lay” people, we are still experts in our own experience, and we can share with others what it’s like to live — and live well — with (and in spite of, or even bacause of) our injuries. There’s that whole “wounded healer” paradigm that some therapist friends of mine love to talk about. And when it comes to giving people hope, there’s nothing like hearing from others that they’re in the same boat as you, more or less.

One of the things I really disagree with, in regard to current thinking about TBIs is the concept that “every TBI is different”. That may be true, but I think that some health care providers use it as an excuse to not fully engage with TBI survivors and not explore all the options. I think they also say that to cover their asses, so we don’t get our hopes up and have “unrealistic” expectations of them. I totally agree with the author of “Brain Heal Thyself” (I think that’s they title) who really takes issue with that “ever brain injury is different” attitude. Yes, we are all different. Yes, we all have different injuries. Yes, our brains are all different. But we share common traits with one another — in particular, the part of ourselves that’s been hurt — that can unite us and give us a sense of belonging and community. To impose a sense of isolation and alienation on someone whose most prized physical resource has been damaged, is not only unfair, it also strikes me as being a little cruel. All because doctors don’t want to admit that they don’t have all the answers, and they might actually learn something from us… I know I’m over-simplifying and I’m venting. I’m tired, after a long day of being tired… But I think my complaint has merit.

And I’ve got lots of complaints. (I do vote, after all 😉 ) I’m one of those people who cannot help but think critically… not because I hate everyone and everything (though I have my moments), but because I feel that criticism is one of the highest forms of flattery — if I didn’t care, I wouldn’t bother to criticize. I’d just let people wallow and rot. But I do care. I want to help shed light and explore things that people cannot see or have overlooked. Unfortunately, my combination of injuries and personality conspire to make me look different than how I feel, and I often don’t realize that I’m coming across as rough as I am. That’s why I prefer to write — it gives me a chance to edit before I post what I say. Sometimes I speak/write too quickly and I get in hot water, but that’s just par for the course.

I’ve been writing a lot lately, because I’ve been pretty freaked out by some health stuff that’s come up, and I’m worried. No, I think terrified is a better word for it. I’m sure it will all work out, but given my pathetically limited ability to communicate verbally with doctors, I’m really concerned that I won’t be able to communicate with them, and I won’t get the proper care. It’s not a small thing I’m dealing with — and I need to deal with it — but I’m just not sure how I will be able to do it.

I’ll post more about that later, but right now I need to stay on topic and move this along. A lot of things are coming up with me, so it’s not difficult to move *something*. Ironically, the more fatigued and uptight I am, the more I’m driven to write and create and comment on any- and everything that crosses my path. That, and with Veteran’s Day and thinking about how shafted so many of our brain-injured wounded warriors are being… how alone they can be… how lost and alone they are, without sometimes even knowing WHY… it nudged me into action. For my father-in-law, who was wounded multiple times in Europe, and got sent back, time and time again, to be shot up and patched up and sent back in… For the fallen who gave their lives… For the walking wounded who fall through the cracks… for all of us who have been knocked around in this rough-and-tumble world, and may not always have a fighting chance to recover…

I can’t believe that story about your mom’s friend’s husband’s son… I would like to be all cynical and jaded and not be affected, but I literally cannot believe that this actually happened. Pardon my French, but… Oh, for Chrissakes! Holy f*ing sh*t — WTF!?!?!?!? That just totally freaks me out. A neurologist suggested that the guy remove a *vertebra* to deal with the pain?!?!?! WTF?!?!? I mean, is this what they teach people in med school? I have a relative who’s a freshly minted doctor, and they have very little positive to say about neurologists. They just don’t trust them. And after the stuff I’ve been through with some supposedly very good ones, I have to say I’m starting to agree. Of course, there’s also something to be said for second opinions, and personally, even if I was in horrific pain, I’m not sure I’d have the balls to have one of my vertabrae removed(!). That just sounds so extreme. I guess I’m just a wuss, but, man, oh, man — that’s just HORRIBLE.

Okay, I’ll calm down, now, but I get SO upset when I hear about people’s lives being ruined even more than they already are, because some doctor — who is in a position of trust — gives them BAD information, for whatever reason. It’s all the more upsetting, because I really believe it’s avoidable. There are so many of us walking around with this vast amount of life experience, who could open some eyes — if people (including doctors) would only listen. And the experience we carry around with us can apply on both sides of our issues — both towards informing caregivers and experts about what the deal with us REALLY is… and towards informing the walking wounded that their doctor is NOT God, and they can be wrong about so many things.

I think the medical establishment, as it now stands, needs a good deal of work, not least of which is a good dose of humility and the recognition that something is systemically wrong with the AMA and how it trains its doctors. If there were something I would change, right off the bat, it would be the practice of teaching doctors about the human body by using cadavers. I think the practice of studying a dead corpse to learn about the living body is a BAD IDEA, and it starts you off on the wrong foot. Of course, I’m not a doctor, so who is going to listen to me? I’m an engineer and I make my living from creating solutions based on logic, not mystique and precedence-based assumption and a sleep-deprived sense of entitlement, so I’m probably not the sort of person a medical person will listen to. But it seems to me, if you’re going to treat living people, you need to learn how living beings survive and thrive. Call me crazy…

I know I’m just venting, here, and I’m not being supportive and productive and making a positive contribution, but I just don’t understand this whole dynamic with doctors. I don’t understand why they think they’re all that… why they think they can tell people to remove a vertebra… why they think they can toss around diagnoses (correct or not) and pretend that they are God. I just don’t get it. It seems really dangerous to me. Really dangerous and not very bright. I suspect all that sleep deprivation during their training does something to their thought processes, and the fact that so many of them deal with crises so much… and their limbic systems get whacked… amygdala alerts 24-7 can’t be good for the human system. So I think they may end up getting turned into medical machines of sorts. I’m just thinking out loud, here. I do have tremendous compassion for the folks we turn to for our life-and-death decision-making. And I would never have the nerve to step into that role. It must take a very special kind of person to do it properly. Problem is, I’ve met precious few doctors who I’d trust with my life — I do know a few, and I literally would trust them with my life. But the majority… I just don’t know how our society has gotten to a point where we value human life so little, that we turn our fate over to people whose egos are clearly driving their decision-making, no matter what anyone else has to say about it. “They’re the doctor…” And that’s supposed to be enough?

What can we do about this… indeed? The more I think about it, the more impotent and ineffectual I feel. There are SO MANY PEOPLE SUFFERING, because they cannot get the right information, and when they do get information, they cannot decipher it, and they’re left to their own limited devices… just when they need more help than ever. I fell so deeply for the suffering folks — tbi survivors and family/friends alike — who are struggling with this seemingly insurmountable obstacle, given no hope, told that they have lost just about everything, and whatever is left, they’re going to lose, too. I almost can’t bear the thought of all that suffering — especially in the lives of our returning veterans… and their families, too.

It’s just so hard. And I speak from many years of experience. IT IS HARD!!! It is harder than anyone with a fully functioning brain can imagine. It is harder than anyone who has not been through it can possibly comprehend. TBI — by its very definition — defies comprehension. And it leaves us to fend for ourselves, come what may. Some days, I can’t believe I’m still here. All the bad decisions, the run-ins with cops, the accidents, the screw-ups, the near-misses, the close calls… And all the people I’ve totally pissed off and alienated, who had once been valued allies and friends… Man oh man, am I blessed to still be here and be able to write this! I am so deeply grateful to whatever higher power out there thinks my life is worth saving. I am so profoundly grateful to all the strangers who helped me (or who just resisted the urge to take advantage of me)… the friends who bore with me… the (few) family members managed to love and accept me… the partners who — for however long — put up with me. And the person who has managed to hang in there with me for the past 18 years. I am indeed blessed. And I can’t account for it at all. I mean, when I’m in a bad way, I’m REALLY in a bad way… just impossible to live with… How I still have what I have, is nothing short of a miracle.

Now, I can’t speak for anyone else, but I feel utterly compelled to help. To do something. And my “thing” is writing — detailing my life experience in as much depth and breadth as I can. I don’t care much for fame and fortune — well, fortune would be nice, and I won’t turn away financial contributions to help me dedicate my life to educating people about how to live well in spite of TBI — I just want things to change. I want people to hear about someone who has sustained multiple TBI’s throughout their life and has managed to put together a really, really “normal” sort of existence that nobody — especially not my parents — ever thought I would have. I want people to know that they don’t HAVE to lose it all, just because they have a brain injury, and in some ways, they may even find themselves able to do different things better than ever. It takes a long while for a lot of us. It took a long while for me, to sort through everything. But it can be done. TBI doesn’t have to be a death sentence. And it doesn’t need to mean the end of everything you care about and love to do. Yes, you may need to part with some things that used to mean a lot to you. I lost a bunch of stuff, after my last injury, including my ability to spend time in open spaces, be comfortable around strangers, my love of reading fiction, and a really, really good job. My injury cost me hundreds of thousands of dollars in personal net worth. And I lost a lot of friends along the way. But you know what? I’m still here!!! And I’m still loving my life! I’ve let that old shit go, about how I was so wronged and life is so unfair. Of course I was! Of course it is! No kidding. But I’ll be damned, if I’m going to let that stop  me from living my life.

Seriously, money can be replaced. And every day, I’m finding ways of regaining/restoring the things that mean most to me. I don’t WANT to dread reading stories, anymore, so I’m practicing reading story-driven books, like autobiographies and personal memoirs of people who have overcome things like me. I’m also starting to read fiction online, which I can take in shorter bits and pieces, while I’m at work. I’m coming to terms with the anxiety and fear that’s been driving me all my life, learning new techniques for how to deal with it all — the first part being, just realizing how driven I am by anxiety and fear… I never realized it till this past year, when I really started coming to terms with my TBI’s. And now that I’m aware of it, I can actually do something about it!

I’ve also got new friends who love and accept me for the odd and sometimes bizarre creature I am. Jobs come, jobs go. I’m still breathing, I’m still able to put one foot in front of the other. And as long as I don’t hold myself to unrealistic expectations, including the expectations of others who have some pretty superficial values, and I give myself a break and remember I STILL MATTER AS A HUMAN BEING!!! well… I’m fine.

What we can do to help — and yes, now I’ll finish the thought 😉 — is write all this stuff down. Everything. As much as we can record. Put it out there. Spread the word. Make it possible for people to do the social networking thing with our blogs and do social bookmarking and all that. Do podcasts. Do teleseminars. Do webinars. I, myself, have to really watch my energy, and I have such a hard time dealing with people in person, that I’m pretty much excluded from the public speaker circuit. And I get so turned around when I’m actually talking to another person, at times, that I can’t get my words out, and I sound like a real space-cadet. That’s not who I am, but that’s how I present, a lot of times. So, I recognize my limits, realize what I cannot and should not do… and I do something else. Like blog. The things that I cannot do, I really should not do. But the things that I can do, I can do really, really well. So, I figure out what works, and I just stick with that. I let the other people out there do the things I cannot — like public appearances and YouTube videos and podcasts and whatnot. We all have something to offer, no matter how severe our array of deficits. The trick is finding out what works for you, and doing that as well as you can (without completely exhausting yourself, which I am prone to do).

Very, very cool. Wow — something that actually works. Imagine that… I hope it continues to work for you. By all means, do post info about this here, if you get a chance.