Doing it differently this holiday season

I did something quite unusual last night — I went Christmas shopping by myself at a much slower pace than usual. I didn’t manage to buy everything I set out to, but I got everything I could, and I got through the experience in one coherent piece — and I was able to get my nap after I got back.

Normally, this time of year is marked by team-shopping with my spouse. They contact everyone in the family and find out what people want… or we talk about what we think people want, and then they make up the list. We take the list, hop in the car, and head out to stores that look like good candidates, then we slog through the process of elimination, muddling our way through… with me getting so fried I either completely shut down and become non-communicative, or I melt down and fly off the handle over every little thing.

We usually spend several evenings like this, ’round about this time of year, and we’ve both come to dread it a little. My meltdowns had become more extreme over the past few years, and this year we were both really dreading the whole Christmas shopping business — to the point where we are going to be late(!) with presents for family members in other states. That’s never happened before. We were always good about it. But my meltdowns screwed everything up.

We both recognize that doing a lot of social things, this time of year (when work is actually getting more crazy, what with year-end and all), takes a huge toll on me. Even if it’s with friends (especially with friends), all the activity, all the interaction, all the excitement, really cuts into my available energy reserves. And then I get turned around and anxious… and I either regress to a cranky 9-year-old state, whining and bitching and slamming things around… or I melt down, start yelling, freak out over every little thing, and start picking at my spouse over things they say and do, to the point where neither of us can move without me losing it.

What a pain in the ass it is. Of all things, the uncontrollable weeping bothers me the most. The yelling bothers my spouse. It’s embarrassing for me and frightening for them, and neither of us has a very Merry Christmas, when all is said and done.

So, this year we did things differently.

We split up for the day and took care of our respective activities.

My spouse went to a holiday party that was thrown by a colleague of theirs who’s married to an attorney who deals with financial matters. I was invited, too, but we both realized that it would be pretty dumb for me to try to wade into the midst of 50+ actuaries and tax attorneys and their spouses who were invited to the shindig… and try to hold my own. Certainly, I can keep up with the best of them, but marinating in such a heady soup, especially with everyone hopped up on holiday cheer (eggnog, red wine, punch, etc.) and all animated and such, would have been a recipe for disaster.

So, I didn’t go. Instead, I took our shopping list and headed to the mall to stock up on what our families had requested. We had written down in advance all the names and the specific gifts we were going to get, and we had also written down where we were going to get them. That list was my lifeline. Especially in the rush and press of the mall, which sprawls out in all directions, with satellite stores on either end.

I’m happy to report that I actually did really well. I made a few tactical errors — like not parking in the first lot I came to and walking in. But that turned out okay, because if I had parked in the first lot, it would have been all but impossible to get down to the other end of the mall. I studied the list carefully ahead of time and used a highlighter to mark the stores where I’d be going. I also kept my focus trained on the task at hand — even if it was just sitting in traffic. I also walked a lot more this year than other years. I found one parking space and used it for two different stores. And I didn’t hassle with finding a space that was as close as I could get to the building. I took the first decent spot I could find, and then I walked to the store.

Imagine that — in past years, I was possessed with finding parking as close as possible, and I would move the car between stores, even if they were only 500 yards apart.  This year, I just walked the distance. Even though it was cold, for some reason the cold didn’t bother me, and it actually felt good to be out and moving.

I think that my 5 months  of daily exercise has paid off, in this respect. I think part of the reason I was always consumed with driving everywhere was that I just wasn’t physically hardy. I was kind of a wimpy weakling, in fact — though more in thought than in body, but a wimply weakling, all the same. But having a good physical foundation — even just from doing an hour (total) of cycling, stretching, and light lifting each morning — has made a significant difference in my willingness and ability to walk between stores.

It might not seem like much, but the walking (instead of driving) between stores part of the trip actually made a huge difference in my overall experience. Walking between stores — stopping at the car on the way to stash my presents — helped me break up the activity and clear my head. It got me out of that in-store madness, the crush and the rush, and it got me moving, so I felt less backed-up and agitated. And that let me start fresh at the next store.

That was good, because the first store was a friggin’ nightmare. It was one of those big-box electronics places, that supposedly has “everything” but really didn’t. It was exhausting, combing through the stacks of movies and music, only to find everything except what I needed. The lighting was awful — extremely bright and fluorescent and glaring. People kept bumping into me, or walking so close I thought they would run me down. But the worst thing was the acoustics. Everything surface was hard and echo-y and the place was overwhelmingly loud, and every single sound was at least partially distinguishable, which drove me nuts. I’ve noticed that acoustics have a lot more impact on me than light, when I’m out shopping. The store was one big cauldron of loud, indiscriminate noise, and my brain kept trying to follow every sound to see if it mattered. I couldn’t function there. Not with the place full of people — and very agitated, anxious, aggressive people, at that.

I eventually went with a gift card and got the hell out of there. I doubt I’ll ever go back when it’s that full. When the place is low-key and all but empty, I can handle it much better. But at this time of year? Not so much.

Walking back to my car chilled me out. Sweet relief.

At the second store — a bookstore — I started to feel pretty overwhelmed. They had long lines, and the place was packed — which is good for the retailer, but not so great for me. I spent the longest amount of time there, in part because I could feel I was getting overloaded, and I stopped a number of times to catch up with myself and remind myself what I was there to buy. My list was getting a little ragged, at that point, what with me writing notes in the margins and taking it out/putting it back in my pocket. So, eventually I just pulled it out and held onto it for dear life. I must have looked a little simple-minded, but I don’t care. Everyone else was so caught up in their own stuff, anyway. My main challenge there, was not getting trampled by Women On A Mission — many of them carrying large bags and shopping baskets that doubled as ramrods to get through the crowds.

One cool thing happened, though, when I was taking a break — I had a little exchange I had with two teenage boys who were talking about some book they’d heard about. I was just standing there, pretending to look at a shelf of books, just trying to get my bearings, when I hear this one young guy tell his buddy, “I heard about this book I should get — I think it’s called the ‘Kama Sutra’ and it’s, like, about sex, and it’s got these pictures… and it’s really old… like, from India or something.”

Well, I perked up at that, and suddenly very alert, I looked over at them and said, “Oh, yeah — the Kama Sutra, man… You should definitely check it out.”

They kind of looked at me like deer in headlights, and they got flushed and flustered and stammered something about not knowing how to find it. It was about sex, and they didn’t know how to ask someone to help them. I so felt their pain…

I confidently (and confidentially) pointed them to the book-finder computer kiosk, where they could type in the title and it would tell them where to find it in the store.

“Dude, you should totally look into it. It’s got lots of information — and pictures — and it’s been highly recommended… for hundreds of years.”

They got really excited and headed for the book-finder kiosk. Here’s hoping they — and their girlfriends — have a very Merry Christmas.

That little exchange got me back in the game, so I took another look at my list and managed to find the handful of books and music and calendars I wanted to get. I headed for the line and just chilled/zoned out. I didn’t get all tweaked about how long it was taking; I listened in on a conversation for a while, till I realized it was mostly about death and health problems people were having.

Oh – and another thing that helped me keep my act together, was the 4:15 p.m. alarm that I have set on my mobile phone. 4:15 is usually when I need to start wrapping up my day at work. I need to do a checkpoint on the work I’m doing, start to wind down, and begin keeping an eye on the clock, so I don’t get stuck in town past 6:00, which is what happens to me when I don’t watch my time after 3:30 or so. I have this alarm set to go off each day, and it went off while I was in the store, which was a blessing. I had completely lost track of time and I was starting to drift, the way I do, when I’m fatigued and overloaded and disoriented.

It startled me out of my fog, and I knew I still had a bunch of things on my list to get, so I refocused and started thinking about what I would get at the next store, so I could just march in and do my shopping without too much confusion and disorientation. After I paid for my books and music and calendar, I debated whether to have my presents wrapped for free, which might have saved me time in the long run. But I couldn’t bear the thought of having to interact with the folks who were doing the wrapping. They looked really friendly and gregarious — Danger Will Robinson! Warning! Warning! Even a friendly conversation was beyond me at that point.

I realized I just wasn’t up to that, and I must have looked like an idiot, standing there in the middle of the foyer, staring at the gift-wrappers for about 10 minutes, but who cares? Everyone was so caught up in their own stuff, they probably didn’t notice me. And if the gift-wrappers were uncomfortable with my staring, they didn’t show it… too much 😉

Anyway, after I managed to extricate myself from that store, I headed for my last destination. Again, I didn’t sweat the traffic getting out of the lot, and when I got to the final store, I parked at a distance from the front doors and walked in through the icy cold, which was good — it cleared my head.

Inside, I consulted my list again and headed directly for the section that had what I needed. Halfway there, I remembered that I’d meant to buy a very important present at the first store, but I’d totally blanked on it. I started to freak out and got caught up in trying to figure out how to get back to that first store and not lose my mind in the process.  Then, I slowed down and stopped catastrophizing, and in my calming mind, it occurred to me that — Oh, yeah — they probably carried that item at this store, so I went and checked, and sure enough, there it was – score! I didn’t have to back to big-box hell. At least, not that day.

I found some more of the presents on my list, and although I didn’t get everything I needed, I made a decent dent. My partner can come with me and help me sort out the other items either today or tomorrow. Or possibly when we get to our family — they usually have some last-minute shopping to do, and they can cart us around with them. And I won’t have to drive.

By the time I got home, I was bushed. My spouse wasn’t home yet, so I called them — they were on their way home and were stopping to pickup some supper. I said I was lying down for a nap, and they didn’t have to wake me when they got home. Then I took a hot shower to get the public germs off me, laid down, and listened to Belleruth Naparstek’s Stress Hardiness Optimization CD. I had a bit of trouble relaxing and getting down, but I did manage to get half an hour’s sleep in, before I woke up in time for dinner.

My partner had a pretty good time at the party, but they said it probably would have been a disaster for me — so many people, so much energy, so many strangers, and unfamiliar surroundings. I concurred, and I showed them what I’d bought that afternoon.

We’d both done well. We both missed each other terribly, but we did get through the afternoon without one of those terrible holiday incidents that has dogged us for many, many years. Like Thanksgiving, which went so well, this Christmas shopping trip actually felt normal. It didn’t have that old edginess that I always associate with holiday shopping. It didn’t have the constant adrenaline rush. In some respects, it feels strange and unfamiliar, but you know what? If strange and unfamiliar means level-headed and low-key and plain old sane, and it means I can keep my energy up and pace myself with proper planning… well, I can get used to that.

Yes, I’ve done things differently this year. And it’s good.

Solutions-Oriented TBI Recovery

I’ve been having a pretty good month, so far. Actually, the goodness goes  back to late November, when I planned and completed a very successful Thanksgiving. It wasn’t successful in the “worldly” sense — it was successful interpersonally and individually. I managed to make it through the holiday without a meltdown, without a breakdown, without total loss of all control, and with a presence with those I was with that I cannot remember ever having had at that time of year.

Now the next spate of holiday activity is coming up. Two families in several states await the pilgrimage of my spouse and myself. It’s going to be even more rigorous than Thanksgiving. Twice as much driving, four times as many families, probably about 20 times as much activity. And this, over the Christmas “break” when everyone will probably be on the road.

I’m being smart about it, planning ahead, pacing myself… Not taking on too, too much at work, but managing (sometimes just barely) to keep up with my workload. Just thinking about it all makes me flush with excitement/dread. But that’s the nature of the game we play at the company where I work, so if I don’t like it, it’s my own danged fault for staying in it… or it’s up to me to change it.

I’ve  been having some pretty amazing revelations, too, with regard to my recovery. I’m reading again, which is a miracle in itself. I’m also able to sleep 8 hours at a stretch, now and then (last night was such a night). And I’m actually awake before 11 a.m., thanks to the daily wake-up exercise routine. I’ve also discovered that, even if I am planning on doing some exercise in the morning — like outside chores that promise to wipe me out — I still need to do my exercise routine to wake myself up, before I do anything else. No compromises, no shortcuts.

My neuropsych has been, well, psyched about my recent breakthroughs. The fact that I’ve been able to manage several extremely challenging travel/family situations in the past five months… the tremendous progress I’ve been making at work… the exercise and the better choices… the difference in my outlook and how I do things, each and every day… not to mention the revelations that I’ve had about what I’m truly capable of… it’s just floored them. Part of me wonders if they’re really amazed, or if they’re just trying to encourage me. But I trust them and their judgment, and I believe them when they say they’re just amazed at my progress.

It’s true. I have been making incredible progress. I have Give Back Orlando to thank for that, as well as my neuropsych and the materials I’ve been reading. One of the main ingredients that’s been critical in my rebound from teetering on the brink of financial ruin and homelessness (I’m not kidding), a few years back, has been the approach I’ve taken to my recovery. Ever since I realized I needed to recover — to rebound — from my fall in 2004… not to mention a lifetime of multiple periodic concussions… I’ve been focused not only on understanding the nature of my issues, but also devising solutions for the issues that are tripping me up.

Indeed, when I look back at my concussive life — starting when I was a young kid, on up through my late 30’s — I can see a pattern, an approach, that has served me well in rebounding from my falls and accidents and knock-out attacks. That pattern/approach was temporarily hidden from me, after my fall in 2004, so I literally forgot how to recover. But when I started getting back, I started to get back into this pattern, and it is helping me as much now — probably more, since I understand the underlying issues — as it did when I was trying to get through my childhood and adolescence and young adulthood after my different injuries.

I could post a laundry list of all my issues — and I probably will in a later post — but I haven’t got time for that right now. Suffice it to say, I’ve got a raft of them. Tens of them. And they cause my trouble on a daily basis. Now, looking at them all by themselves (which I tried doing, a few years back) just gets way too depressing. Seeing my issues for what they are — serious and threatening to my way of life and everything I hold dear — is necessary, true. But if I’m going to recover and rebound, I have to focus not on the problems they cause me, but the solutions I develop to deal with them.

If you’re interested in figuring out how to recover and rebound from your own issues — whether they’re TBI-related or some other sort of cognitive-behavioral bugaboo, like PTSD — I’m happy to share what I do — and have done for as long as I can remember — to get a handle on my issues and overcome them, day after day. (Note: Clearly, I’m human, and some days are better than others, but this is what works best for me — and I have a very successful and fulfilled life to show for it.)

Here’s the approach I take:

  1. I figure out what I want to do. I establish a goal or a desire I wish to fulfill— Like getting out of the house in time to make it to work by 9:30 a.m. I write down what I’m going to do.
  2. I plan my approach and try to prepare as best I can — I collect everything I’ll need for the day, the night before, set my clock early enough to get up, and talk myself through what I’m going to be doing to get out the door at a decent hour. I write down the steps I’m going to follow, in the order and time I plan to follow them.
  3. When the time comes to accomplish my goal, I make a point of focusing completely on it, and I do my utmost to achieve it. I also write down the things I did, and if I don’t make my own goal, I write that down, too, and make a brief note of why it didn’t happen. — As in, I get myself up, do my exercise, and prep for the day. I make a note of what I did all along the way — not lots of notes, but little notes so I’ll remember later. If I can’t manage to get out the door, I make a note of why that was (such as, I miscalculated the amount of time it would take me to eat breakfast, or I forgot that I needed to take out the trash and clean out the back of my car) so I can go back and think about it later.
  4. Over the course of the day, I continue to write down the things I am doing, if they are working or not, and I also look back at how my day started, to put it all in context. If my late morning arrival at work threw off the rest of my day, I can see how it all comes together, and I can also shift my schedule a little bit (like take some things off my plate) so I can catch up with myself again.
  5. At the end of the day, I take a look at how the day went, and I make a note (mental and written) about the things that stopped me from achieving what I wanted to do. I think about this as I plan my next day — if I’m not too tired, I can sometimes head future problems off at the pass. For example, if I was late getting out the door on that morning and it screwed up my day, I can look at what I’ve got going on the next morning, and make changes accordingly. Like double-check my list of things to do, and do them ahead of time. Or set my clock earlier, so I have more time to get things done.

I do this every day, just about. Yesterday, I was really late for work, and I didn’t get to do some things I was  supposed to, because I had forgotten to do some essential chores the night before. I realized, over the course of the day, that I was very tired from a full and active weekend, and I did not rest enough over the past two days. I also realized that when I get tired, I tend to push myself even harder, so I needed to not drive into work today, but work from home. Working from home lets me move at my own pace AND it lets me get an afternoon nap in, which is very important — especially with the holidays coming up.

And all along, I consult my notes. I don’t try to make them all neat, but I do try to make them legible and leave room for other notes in the margins ans I go through my day. Making notes of why things didn’t work out is actually more for consideration throughout the course of the day. I don’t spend a huge amount of time with neatness and completeness. The point of writing it down is more for developing mindfulness around the things I did not manage to get done when I planned to. And giving me a point of reference, when I’m starting to get overwhelmed, as I tend to do.

All in all, the system works for me. It’s solutions-oriented, and the only reason I pay attention to my problems, is so that I can overcome them. I refuse to be held back by these issues, which can be dealt with systematically and logically and logistically. If I have certain problems with fatigue and overwhelm, I can take steps to head those problems off at the pass, or address them in the moment they come up.

This orientation towards goal-oriented solutions is the only way to go for me. It puts my issues in a context that is empowering, rather than defeatist. It also cuts them down to size, by breaking them into smaller and smaller pieces, which I can take, one at a time, to overcome them. When I look at the mammoth iceberg of issues I have — all together at one time — it quickly becomes overwhelming. But if  I break them down into “bite-sized” pieces and tackle each one at a time, AND I attack them with the purpose of achieving the goals I set for myself each day, I can make some real progress.

And I have. And I continue to. Almost by accident — but with a lot of great help from a few key resources — I have come up with a blueprint for addressing my TBI issues, one at a time. And it works. The proof is in my life, which just keeps getting better.

Feeling normal. Normal is good.

Back from Thanksgiving for real, now… Back in the swing of things at work, where everything is going crazy for year-end. They had another round of layoffs at work, but I was magically spared.

I’m pluggin’ away at my new job, rallying back after what was a less than stellar review of my first cut at the project I’m working on. Must be smart about this. Will be smart about this. Will use fewer pronouns, so I think faster 😉

But I’m tired. Tired and ready to just relax. After my 10 p.m. call tonight, when people overseas complete a job I asked them to do, and I check their work.

Still digesting Thanksgiving time. And trying to find space in my schedule to just take a break. One of my coworkers stopped by earlier today, saying they didn’t have enough work, and they were just occupying themselves with other things. I wasn’t sure what to say. I’d give anything to have less work — but this way I’m safe(r) from layoffs, I guess, which is good.

The main challenge I’m facing today, is accepting the fact that I had a normal Thanksgiving and I’m having a normal life. A normal life with average expectations. It’s to be expected that this new line of work will tire me out. And it’s to be expected that I can share time with my family and not melt down or lose it or freak out on them. It’s to be expected — today, anyway. In past years, not so much.

So, I’m tired, yes, but I’m still grateful. I’m grateful that I am having a normal life, with all its ups and downs. I’m grateful that I had a good time with my family. Most of all, I’m grateful that I am actually feeling normal. What a change this is, after 40-some years of NOT feeling normal.

I think I’ll celebrate Thanksgiving through the end of the year.

Seeking balance

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

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

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

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

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

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

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

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

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

This makes me so happy! 😀

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

Again, balance is important.

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

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

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

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

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

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

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.

I can’t believe it’s back… Pain redux

I must be really stressed, these days, because lately I’ve been having an incredible amount of pain all over my body.  I think I may have overdone it, driving so much over Thanksgiving — sitting behind the wheel of my late-model Plymouth minivan has a way of doing a job on me… my hips, my knees, my back, my shoulders… But then, I’ve been having intermittent and increasing pain issues over the past few weeks. This last spate is just an unexpectedly intensified version of what has been happening for quite some time.

I’ve had various pain issues for as long as I can remember, with some dramatic spikes in the discomfort over the years, so it’s not something new for me. But this pain is different from the tactile defensiveness I had when I was a kid. It’s in my tendons and in my joints with a vengeance, and it’s really disconcerting to me, because I have not been expecting it. These days the pain is spiking at a level that I haven’t been at in a number of years. What a bummer! And here I had thought that I was getting to a pain-free state. I really did.

This most recent “spate” started some weeks ago, but I didn’t pay much attention to it, because it wasn’t getting in the way. Plus (so I thought) I had other things to think about, than the chronic pain that’s been dogging me ever since that car accident in 1988 (when I was hit from the side by a speeding sedan) that not only scrambled my brain and made it impossible to understand what people were saying to me, but also threw me for such an emotional and behavioral loop that I quit working and started drinking heavily all day, and I almost irreparably screwed up my life — were it not for the presence of people around me who cared about me and were willing to take all my b.s. with a grain of salt…. and hope for better times.

But nowadays, this body-wide pain is “digging in” and making itself really noticeable. I try to get my mind off it, I try to think about all the stuff I have to do each day, I try to relax and “breathe into it,” but it’s starting to make me crazy… showing up in the background of my life, interrupting my thought processes, encroaching on my peace of mind, and reminding me of days gone by when there was no escaping this generalized, terribly non-specific pain that seemed like it would never go away. I become so nauseous, when I think about this being here and never giving me a break. I have gone through months and months and years of persistent pain that showed no signs of abating, and when I think back about it, and I remember what it’s like to be there, I start to feel really ill.

Which makes me feel like a wuss. Because I have dealt with this before, and I’m determined to do it again. But with some kinds of pain, it literally feels like it’s never, ever going to end. It messes with your mind. It screws up your brain. Even more than it already is. Add chronic, debilitating pain to a mild traumatic brain injury, mix liberally and spread it out over weeks and months and years, and you’ve got a potent cocktail for being driven to the brink of sanity.

Back in 1988, before I could put two and two together and had the information that tbi — especially car accident head injuries, or whiplash — can cause an onset of pain and aches, I went to all sorts of specialists to determine the nature of my condition. They came up with nothing other than that it might be an autoimmune condition like arthritis, and I needed to just go on meds, reduce my stress, get plenty of rest, and stay out of the sun, in order to get better. I think I completely forgot to tell them about my car accident. I didn’t think it had anything to do with anything, and I can’t recall them ever asking me about it.

I did all the stuff they told me to do to address my pain — AND I spent a lot of time (and money) going to specialists who could tell me not one substantive thing about what I was going through and what I could do about it. 20 years ago, I spent my holiday savings (that was supposed to go to presents) on an expert located half a day’s drive from my home. I took a day off work, corralled a friend to drive me down, and I spent a very unfulfilling day with a gentleman who had a bunch of gizmos and a rich pedigree of education and experience, but who could still do precious little for me. He couldn’t even confirm or deny what was going on with me. I can’t speak for the others in the very long waiting line of decrepit and suffering folks… I hope he could at least help some of them. Or just one. Anything.

He didn’t do much for me, other than to tell me that he couldn’t tell me anything definitive about my condition.

So much for my holiday presents fund. So much for my day out of work. So much for the next three years of my life, which I spent chasing — in vain — a plausible solution for my condition.

I eventually just quit going to specialists, because they would tell me, “Well, we took a lot of blood from you, but we still can’t tell you anything specific about your situation. But here are some drugs to help cut the pain a little bit.”

When those drugs won’t work, they’d give me something else.

When those would work sorta-kinda, but they would tear up my stomach, the docs would give me something to cut the pain.

“What will this do to my stomach? Will it protect it?” I asked.

“No,” they told me, “but you won’t be in so much discomfort.”

“So, let me get this straight… I’m taking meds that are going to eventually eat a hole in my stomach, but this other pill will keep me from feeling it… and eventually I might have a hole in my stomach, but never even feel it?”

“Something like that,” they told me.

After talking with some trusted confidantes and thinking long and hard about how little good these advanced meds had done me — some of the side effects were things like malaise and short-term memory loss and disorientation… at a time when I was doing contract work in a number of different locations and could not afford to forget where I was(!) — I decided to discontinue my medication regimen. I resisted being “non-compliant” with all my might, but I was left with no choice, ultimately. I wasn’t getting better, I was feeling worse. It was impacting my quality of life in pretty scary ways. And I just didn’t have the money to cover all the testing that was required every month, since I was unable to work full-time in a job that gave me health insurance, due to my pain issues.

Ironically, I met someone at that time who was suffering from fibromyalgia — a condition which involves a whole raft of really difficult and distressing discomforts. This person had to sell all their furniture (since they couldn’t sit/lie on it and they needed the money) and go on partial disability. I knew I was in a lot of pain, but their condition was utterly crippling. That great degree they’d earned from a great university… the good job and the cool apartment they had… their whole shootin’ match was in the process of disintegration because of their “fibro” issues.

I did learn a lot about chronic pain, in the relatively short period I knew this person. And I learned — perhaps most importantly — that no matter how bad I may feel like I have it, there is most definitely someone out there who has it a whole lot worse than me… who I may be able to help in some small way.. and who I can probably learn from and gain some knowledge from. I learned alot about chronic pain, at that time. Even if my condition was far less disruptive than theirs, what I learned about stretching and rest and nutrition, was priceless. And I believe it really helped me, when I incorporated it into my life (I quit smoking, started eating right, made a priority of getting ample rest, and I changed shoes, so I’d have better support and less impact when I walked). Even if they were still in terrible pain – and eventually moved across the country in search of a health solution — which they found in Chinese medicine — I was able to adapt my life in ways that eased my pain considerably.

Here I thought I was in the clear… I have been relatively pain-free for over 10 years now, with intermittent flare-ups that come along when I haven’t rested properly, or my eating habits SUCK (not often, but it does happen, now and then). I don’t do much dancing, as my knees can’t take it. And I do sometimes feel it in my elbows and back and hips. But I count myself fortunate, that I haven’t been wracked with agony the way I was from 1988-1992.

Until recently.

Now, I have that sick, sinking feeling that comes from the pain that radiates out from seemingly every nerve in my complaining body, wearing me down, tiring me out… I try not to pay much attention to it. I try not to think about it. Some days I can even forget that it’s there (till I move, of course). But then it rears its ugly head, and I’m back “in the hole” again. Sheesh!

Currently, the pain varies, from day to day. A lot of it is across my lower back, around where the tops of my pelvic bones can be felt. My hips and glutes are tender, too — tho’ moreso when I make contact with something around me. My thighs feel like they have hot knots of burning rope tied tightly around them, and my shoulders and elbows are taking turns giving me twinges and pangs.

My neck is a mass of knotted muscles that complain bitterly when I stretch them. My fingers are stiff and tight — they ache when I flex them, and they complain when I extend them.

My skin feels like it’s being peeled back from my bones, and my clothing is hurting me terribly. The feel of fabric on my wrists makes me crazy — it feels like someone is wrapping a rusty choke chain tightly around my wrists… and twisting. Hard. I normally push/roll my sleeves up to my elbows, because this sensitivity is nothing new. I’ve had it since I was a kid — along with pain on the tops of my thighs and behind my knees. But these days, the pressure of the fabric on my elbows is really bothering me, so I have to put up with the chafing of the fabric on my wrists.

I’m sure this isn’t sounding really great to you, right now, but I have to tell you what it’s like, so I can report back about what I’m doing — so you can see how well I am able to bounce back.  It’s all about the bounce, baby!

Here’s what I’m planning to do:

Try Arnica — a homeopathic remedy that’s recommended in some places for muscle aches. I’ve used it topically for bruises and achey muscles, and I picked up some little pills to take. I’m to dissove 4 pills under my tongue, 4 times a day.

Take hot showers — this always helps me. I’m bringing a towel to work, because they have showers here, and I may need to warm up.

Get plenty of sleep — don’t rush out of the house, first thing in the morning, but do some work at home. Make sure I have plenty of time to sleep.

Cut out the caffeine — Ouch! But what choice do I have at this point? I need to cut back, anyway — the 3-5 cups I’ve been drinking each day over the past week may have something to do with my pain and my difficulty sleeping.

Pray — to whomever is listening… they got my butt out of some serious trouble in the past, so I’m pretty sure someone out there is listening. Even if they aren’t, I’ll feel better.

I suspect that this pain stuff is leftover stress from the long Thanksgiving holiday I was just on. That’s what I’m hoping, anyway. With any luck, good rest and reducing stress will help me get back to some semblance of okay-ness.

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…

Saturday chores – a-la tbi

I was feeling so great yesterday… by the end of the day, that is. I got up around 7:30 and got to puttering and blogging… writing and thinking and doing some extra needed maintenance on the blog. My upstairs study has devolved into a general holding tank for all kinds of crap I can’t figure out what to do with, so I steered clear of it and used the computer downstairs to do my blogging.

I needed to run some errands in the a.m. — pick up a package and mail out important things at the post office, buy a leaf blower, deposit a check at the bank, pick up milk at the store, and then come home to take trash to the dump and get some other chores done around the house.

I really needed to leave the house by 10:30 in order to get everything done on time. But the time got away from me, and at 11:04, I found myself pulling the car out of the garage, wondering how the heck I was going to get into town in less than an hour — the post office — the main place I needed to get to — closed at noon, and traffic was bound to be really slow, due to everyone milling around, trying to line up their lives before the Thanksgiving holiday.

I decided to take the freeway, instead of secondary roads, to get into town, and I was able to reach my destination with 9 minutes to spare. That was all I needed — and thank heavens for the upcoming holiday, as a lot of the college students who usually leave their errands till the last minute on Saturday and hold up the lines at the post office, were probably either headed home for Thanksgiving or off doing something else.

So, I did everything I thought I was supposed to do, I got myself something to eat, and then I hopped in the car and headed home. Again, I was late — the dump closed at 3:00, and I had all of an hour and a half to get to the bank, stop off at the store to buy milk, and head home to take out the trash.

I hauled ass back down the road, a little spacey and out of it — I was feeling foggy and not entirely with it — and I was losing track of what I was supposed to be doing. I managed to deposit the check in the bank and pick up milk and look at a leaf blower at the hardware store… and I was on track to make it home in time to bag up trash and haul it to the dump. But then I realized that I’d forgotten to mail out the stuff that was time-sensitive — part of the reason I’d gone into town, in the first place was to get the stuff mailed out that day!!! And now all the local post offices were closed for the weekend. Ack!!! Well, I couldn’t worry about it. I dropped the stuff in a box at a nearby post office, noting that it would all go out at 6 a.m. on Monday, so that was almost good enough. And I made a note to make notes to myself and follow them, when something was important.

I did manage to get back to the house in time to take the trash to the dump. But then I realized that I had really needed to purchase a leaf blower, not just look at it. I guess I had used my time okay earlier, because I had at least found where the leaf blowers were in the hardware store, which is sometimes half the battle, and I’d managed to price them and found them cheaper than I’d expected.

So, after I got the trash to the dump, I drove back to the hardware store, pulled the leaf blower off the shelf, and went looking for an extension cord. The associate who helped me pick out the right extension cord was helpful, but I didn’t understand everything they were saying to me… I sort of went by their tone and nodded and smiled and repeated what they said to me, to make it sound like I was following… then I hauled it all to checkout, credit card and rewards card in hand. When the clerk input the amounts, I realized that the extension cord was almost as expensive as the leaf blower — it was an 80-foot heavy duty cord that I’m sure will be fine… as long as it doesn’t blow the fuses in my house. I had tried to see how much it was, but I got confused and thought it was $19.95 — it was almost $40. Holy smokes! I guess I’d better take good care of it… I didn’t have time for the price change to register — if I’d had time and I’d considered that I needed to really watch my spending, I might have told the clerk to take the extension cord off, but I ended up just going with it anyway. I’ll probably get plenty of use out of it, and I need a good heavy-duty cord, anyway, so I can’t worry about it.

The hardest part of the visit to the store was dealing with the credit card payment. It should be easy, right? But there were lines all over the screen, and I had a dickens of a time figuring out where to sign my name, and then were to tap on the screen, after I was done signing my name. It took me a couple of tries, and the clerk had to tell me how to do it. But at least I used the stylus instead of the pen I had in my hand. And when all was said and done, I had a leaf blower and new 80-foot extension cord in the back of my car.

When I got home, I was so tapped, I just took a shower and fell into bed. I hate being so easily fatigued, and I wanted to spend some time in the afternoon using my new leaf blower, but it was not to be. Plus, the wind was up, and there were so many friggin’ leaves, it tired me out just looking at them. I didn’t want to push it. I’ve been feeling like I’m coming down with a cold, and I didn’t want to stress myself any more.

I wasn’t able to sleep the whole two hours I was intending to. About an hour into my nap, I woke up suddenly and started to cry. I hate when that happens. And it’s been happening a lot, lately. It often happens when I’m either freshly rested or I’m over-tired. Fortunately, I’m usually alone when it comes over me — first thing in the a.m. while I’m getting ready for work, when I wake up from a nap, or before I fall asleep at night. I can’t stand crying with other people around me. I feel weak and pitiful and self-conscious. But when I woke up yesterday, I was all alone, except for one of my cats, so I had a little cry and released some of the pressure of this time.

Thanksgiving is the anniversary of two of my past tbi’s (1995 and 2004), and I experience a deep sense of loss that I can’t always put my finger on, around this time. It’s also the time of year when I started to really realize and come to terms with the various losses I’ve sustained — the jobs, the relationships, the financial security — and it’s when I was first able to really look at the impact that tbi has had in my life, ever since I was young. It’s a time when I face all the more closely the loss of my dreams, the loss of many of my fondly held assumptions about what I am capable of doing and what I can safely attempt, the loss of the person I once was… not to mention the person I mistakenly thought I had been (but never truly was). Thanksgiving can be a very hard time for me, so I have to cut myself a break and just let myself cry when I need to cry.

Last night was a little difficult — lots of agitation coming up, lots of resentment and stress and breakdowns in communication and bad timing. But by the end of the evening, I had regained my footing and relaxed into a children’s movie that — while a little simplistic and not quite believable in places — still didn’t have the rough language, sex and violence that tends to upset me.

All in all, forgetfulness and backtracking and confusion notwithstanding, I did manage to get many of my chores done. And today is shaping up to be a nice day, so I can continue with the theme and hopefully fire up that leaf blower.

Note to self: Read the manual and double-check everything, so you don’t blow the motor or screw up the apparatus before you get started. I don’t want to wreck my latest power tool, like I did my chainsaw – which I totally hosed because I used it a bunch of times without ever oiling the chain. (In case you’re wondering, that’s a bad thing and leads to malfunction — never a good thing with chainsaws!)


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Thanksgiving anniversary #2 — 2004

I’ve been thinking a lot about the Thanksgiving holiday, lately. It stands to reason, since I really got in touch with the impact that my TBIs have had on me, last year around this time. You wouldn’t think that a history of at least six head traumas (most of which knocked me silly and one of which knocked me out), and a lifetime of cognitive-behavioral issues, a spotty employment history, and a see-saw of a personal financial history would escape detection, but I never put it all together and realized that my car accidents, concussions, falls, and blows to my head could have had a cumulative effect, till last year, this time.

But if you consider that head injury has a way of disguising itself (like alcoholism is a disease that tells you there’s nothing wrong), it’s not entirely unlikely. My cluelessness can be explained.

It wasn’t until I saw the long laundry list of tbi-related cognitive/behavioral/physical issues in one place, and made a realistic and honest assessment of my life history, that I realized there was something really, really wrong. I’ve never received medical treatment for my issues. I never had them even identified — till this past year — as something other than “sinfulness” or “character defects”. It never occurred to me that they might be physiological/neurological in nature. It never occurred to me that I might not be BAD… I have just been INJURED.

Anyway, I’m going to quit feeling like a complete and total idiot, and get on with talking about my fall down the stairs in 2004… the most recent time my life was changed by a head injury…

A day (or 2) after Thanksgiving, 2004, I was getting ready to leave my parents’ house after the holiday. I was standing at the top of the stairs at my parents’ house (very steep staircase, about 20 stairs or so), packing bags and carrying them to the car to head home

I was going to walk down the stairs, when someone called to me from the bedroom. I was standing at the top of the stairs, no bags in hand, my head all over the place with thinking about making the trip back.

I turned to listen to what they were saying and see what they wanted me to do, and my feet just went out from under me. I was in stocking feet, which wasn’t the smartest thing, since the carpeted stairs have always been slippery, and the 20 stairs or so are very steep.

It was so surreal… My feet just went out from under me, and I landed on my back and I felt the back of my head hit hard on the top 3-4 stairs, as I went down. My head just bounced off the top stairs, and it took a few impacts before I realized I was even down, and that I was headed for the ground floor. It all happened so quickly — a split second, it seemed like. I’ve always had fast reflexes, so I had the presence of mind to lift my head up as I tried to stop myself by putting my hands and feet along the walls. But I was moving too fast, and I couldnt’ get a grip. I couldn’t stop my fall, and I ended up sliding down the whole flight.

When I got to the bottom, I was dazed and drew a blank. What had just happened to me? Why was I at the bottom of the stairs? I may have actually been “out” briefly — maybe a few seconds. I don’t recall exactly. I do recall there being a bit of a gap in my thinking at that time — things may not have gone completely black, but they did get very faint and dim. I didn’t immediately know where I was or what had happened to me. I remembered going down… falling… sliding… but I still didn’t know why I was at the bottom of the stairs.

I wasn’t sure if I could move, and someone called to me, as though from a distance. They sounded worried… harried… concerned…

I answered faintly, then I got up and went into the dining room before anyone could come to check on me — I just didn’t want to worry anyone. I also didn’t want anyone pulling on me, while I was trying to get my head together. This has always been my way — to shake off others around me, while I collected myself. To refuse assistance, while I got on my feet. Some people have called it “pride”, but I literally cannot think when someone is all over me, talking to me, interacting with me… and I need to keep my head clear, if I’m going to ensure I’m okay.

I got up and went into the dining room to check myself out. I just sat, dazed, at the dining room table, for a few minutes, catching my breath and trying to get my head clear. Gradually, I realized that my back was hurt. I didn’t really think anything of hitting my head.

Someone came downstairs to check me out, and asked if I’d hit my head. For some reason, I said “No” – I’m not sure if I even realized it at that time, I was really dazed — but I do remember that I didn’t want to worry them, and I didn’t want to have to concern myself with that, because I didn’t trust the nearby hospitals. I was also concerned that the hospital would take actions that I couldn’t defend myself against, because I couldn’t communicate effectively. The last thing I wanted, was to be checked into a hospital I didn’t trust, in an area where I was uncomfortable… and miss work. I just couldn’t take a chance on bad healthcare.

I remember that I was more worried about my back being torn up – it really hurt. It had a big brush burn on it, and I focused on getting that taken care of. I had someone put some cream on it and cover the really raw parts with a bandage.

I recall being somewhat out of it, for the trip home, but I made it back okay. I don’t remember much from the days following, as that was a very busy time of year at work, and there was a lot going on. We were at year-end, and a mammoth project I was working on for the last year, was being launched. Tensions were high, and we all had to be 100% “on” — the last thing I could accommodate at that point, was a head injury. Or any kind of injury at all.

I think that urgency, that determination to not be “substandard” may have driven me in ways that kept me from healing. I didn’t get the kind of rest I needed. I didn’t take care of myself. I ate the wrong foods. I really pushed myself and took on too much. I think this is what happens with head injuries — at the time when we need more help and rest and care than usual, our injured heads tell us the exact opposite: that we don’t need as much rest, that we’re fine, just fine, and that we can do more than we realistically can. And because our injury is hidden, and others tend to hate to think we might be cognitively impaired, our drive is not only accepted, but sometimes rewarded by the very people who are also harmed by our injuries.

After that accident, I started having more trouble at work, relationships fraying and straining, not being able to keep up with my work, constantly feeling like I was falling behind, saying inappropriate (and insubordinate) things  in meetings, and becoming openly hostile and verbally aggressive towards others I worked with.  I just was not myself… people became afraid of me and started avoiding me and started pushing me away, marginalizing (or just outright ignoring me) in meetings and openly playing favorites towards others who were competing with me.

I went from being one of the top go-to people in my line of work, to persona non grata and being told I had to leave the group by July of 2005 (8 months after the fall). I’m surprised I lasted that long, but I think my past “stores” of goodwill that I’d built up over nearly 9 years of dedicated, quality service, spared me immediate repercussions.

When I was told I had to leave the group, highly-placed vice presidents offered to help me find a better position. There were people in positions of power who offered to help me, but my thinking was so fuzzy and my behavior was so erratic, that I couldn’t accept their help. I couldn’t understand the consequences of my problematic actions and behavior, and I decided to just take matters into my own hands — another bad idea, compliments of my head injury. I converted from a full-time employee to a contract technical writer at about 60% of my former pay. And four months later, I left the company permanently.

Thinking back, I can’t say that I miss the high pressure and stress, but if I’d had a clue about what was going on, and if I’d been able to manage myself and my situation better, I might not have had to part with hundreds of thousands of dollars in stock options and nearly a decade of quality recommendations and high-performance job history.

It ended on a very sour note… and it wasn’t until this past year that I realized — fully — that it wasn’t necessarily that “awful” company that was to blame for my crash-and-burn. It was my head injury.

So, this Thanksgiving is quite bittersweet for me — bitter because I now realize just how much I have lost over the course of my life, thanks to my injured brain and the ignorance of people around me and my inability to get the help I needed.

And it’s sweet, because I have a lot of love in my life, I have people around me who accept and support me and realize that I need help with my issues, not judgment for my shortcomings… I have my health, I have my sanity, I have access to a lot of quality information, and even though things are sort of dicey, right now, with my job and money, I have the determination and the stubbornness to hang in there till i figure it all out. I also have professionals who can point me in the right direction — whether in person or online — and even though I do have to overcome a lot of deficits just to function at a ‘normal’ level, I can still do a pretty good impression of a regular person… and buy myself time to figure things out for myself.

I never knew, until a year ago, just how much my head injuries had cost me over the course of more than 40 years. Now I know… now I have information… and I can now get help.

And so I shall.

I don’t give up. I just don’t. And for that persistent quality, that stubbornness, that inborn tenacity that refused to take “no” for an answer… that inner wanderer who wrestles with angels and refuses to let go until i am blessed… for all that, I give thanks.