Two more days… then home!

Today we rest at my parents’ home, then we are driving home tomorrow… missing the worst of the Thanksgiving traffic.

I’m going to pause now for a Christian moment, since I have been surrounded by very religious Christians for the past 5 days… Praise God Almighty! Praise Blessed Jesus!

I only have another 30 hours to go (give or take) till I am back in my car and headed HOME to my own space, my own diet, my own schedule, my own life.

This really has been a very challenging time for me. The most challenging thing, by far, has been dealing with people’s prejudices and judgments. My spouse has been having some difficulties, being off their schedule — as have I. They’ve been tired and irritable and have not been thinking clearly or as mobile as one would expect. And both sides of the family do not handle that well. So, they are hard on my spouse, which is hard for me to watch. My in-laws, especially, are pretty judgmental, and they put all kinds of pressure on my spouse to DO SOMETHING about their condition.

Get up earlier each day.

Get regular exercise.

Get a hip replacement.

Go out into the world and do all the things that people without noise and light and scent sensitivities can do.

Of course, they know nothing about the strokes, seizures, cognitive impairment, and I’m not about to tell them that, because they are exquisitely attuned to finding the worst in everything, and trying to overcome it. They will pick out the worst piece of information (e.g., if the power steering fluid had spilled all over the exhaust system, our van could have caught fire) and then they dwell on that. That will become their mantra — Something Terrible Could Happen — and they will proceed to make every thought center around that.

Which is a really draining way to live.

And now that we are away from them, I can breathe. My side of the family is overwhelming in other ways – we’re about to start the day’s social overwhelm drama – so there’s not a ton of respite. But at least it’s not that constant dark cloud of risk management and imagined damage control. At least I’m out from under that.

So, what have I learned from all of this? It’s going to take some time to figure that all out, but one thing I’ve gathered, is that I have a very unique ability to see people for what they are and accept them for what they are… regardless of their perceived disability and limitations. I can see the goodness and strength in everyone, and I can see the hidden abilities they have, which are usually eclipsed by their challenges or shortcomings. I’ve known a lot of functionally limited people over the course of my life, and none of them have actually seemed as damaged or as strange as others said they were.

I have always been this way, perhaps because it’s what I needed most from others — but never got it. When I was younger, it got me in trouble because I was taken advantage of by people with ill intentions. It’s taken me years to learn how to discern and steer clear of the trouble-makers.

What I’d like to do now, is find some volunteer opportunities to use that to help others.

I have several free days my employer gives me to use for volunteer work, so for the holiday season, I think I’ll look for a chance to do that.

Everything can be used — especially the difficulties.




Back from my 2-day reboot

Ahhhh… that’s more like it.

I just got up from a 2-hour Sunday afternoon nap, feeling like I’ve gotten the reset I’ve been needing.

My parents came to visit over the weekend, and we three really good days together. I took Friday off, and we hung out, roamed around my area, spent some time on Saturday with friends they’ve never met, who are more like extended family to my spouse and me, and made and ate good food.

I tend to really dread their visits, because there tends to be a lot of tension with my spouse, who doesn’t see eye to eye with them, politically or socially. This time there was some tension, but I spent a lot of time alone with my folks, while my spouse slept or did other things, so we didn’t have too much overlap.

And the times when there was tension, we managed to diffuse it pretty well.

Overall, I handled things pretty well. Both my spouse and my parents are very high maintenance, so I have to actively manage their activities. I have to manage my spouse, keep them relatively calm and not panicked, jump in and help them with different physical activities, and make sure they feel like they’re involved. And I have to manage my parents, because they have a tendency to pick up tools and start to cut and trim and “fix” things that don’t actually need fixing, which leaves more work for me to do later.

In the past, we’ve had a non-functioning bathroom faucet for several months, because my father decided to fix the drip without having a seat wrench.

Took me a few months to get the seat wrench — I kept forgetting to look for one — and then took me a little while to figure out how to properly use it and fix what my father broke. I felt pretty stupid wrangling with that simple tool, but there it is. What can I say? I’d never used a seat wrench before, let alone looked for one at the local hardware store.

My mother has a green thumb, and she loves to prune and dig and rearrange plantings, which is great, so long as she’s supervised. Once, she “went rogue” with a clipper and pretty much denuded one of my spouse’s favorite plants — one they’d been given for their birthday.

So much for the prized birthday present. That was a sore spot for months, because the plant in question was a centerpiece in our home and became a constant reminder of the havoc my mother can wreak, if left unattended with a clipping implement.

This time, I was “riding herd” on all three of them — parents and spouse — because my parents are starting to slip a little, mentally and physically, and my spouse has been increasingly unreasonable, hyper-sensitive and aggressive… and I didn’t feel like dealing with yet another Clash of the Titans, like we’ve had in prior years. In years gone by, they’ve practically come to blows.

And that blows.

But this time, we kept peace pretty well, and we left things on an up note, when all was said and done. My dad got to fix something that needed fixing. My mom got to plant some perennials we’ve been meaning to plant, and my spouse got to sleep almost as much as they wanted to, as well as spend some valuable time with our friends on Saturday.

Coming off the weekend, I’m feeling pretty good about the whole experience. My parents are utterly exhausting — they are go-go-go, non-stop, all the time. They’re like sharks. They never stop moving, and they can never sit still for longer than an hour. An hour is long for them. In the past, I’ve completely melted down with them, because of the constant activity, the constant movement, the frantic pace they keep up. It’s generally too much for me, and it sets off all my issues — irritability, light sensitivity, noise sensitivity, sensitivity to touch, distractability, fatigue, anxiety… you name it, they set it off.

But this time I did well with them. I kept up. And when I felt like I was starting to wear thin, I stepped away for a little bit. I went to bed early. I took breaks from them all, now and then, and I was pretty good about watching what I was eating. I ate more than I should have, that’s for sure, but it was all healthy food, so that’s something.

Yes, that’s something.

At the end of it all, I’m feeling like I did a good job of handling myself and the challenges of the past three days. I had a lot of trepidation and anxiety about how I would handle things, because in the past things have been very tense, there have been a lot of fights and tension, and for days afterwards, my spouse would go on and on about the things that my parents did and said “to” them.

But we’re all slowing down, and none of us has the old intense edge we used to. My parents have pretty much “gotten” that they don’t have the answers to everything, and now their priority is on enjoying the time they have with the people they love. Their friends and peers are getting sick and dying. Members of our family are going through very hard times. And it’s like they finally got their heads screwed on straight with their priorities in life.

That’s a relief.

And my spouse has lost a lot of their hell-bent momentum, since they got really sick about seven years ago. They’ve also been declining, cognitively, so they’re less able to kick ass and take names like before.

Basically, everyone’s decline is working in my favor. I hate to say it, but it is.

And now, as I look back on the non-stop action of the past 2-1/2 days, I feel a great sense of relief and relaxation that my parents have returned home, and I can get back to my regular life.

Of course, “regular life” means going back to work to deal with all the bullsh*t at the office, the politics, the jockeying, and all the stupid-ass competition between co-workers (who should really be collaborating, except that they don’t seem mentally capable of doing that). Well, that’s tomorrow.

Right here, right now, I’m getting my act together, figuring things out, and pretty much settling into what’s left of my weekend. It’s been a good couple of days, it’s reset my priorities again, reminded me where I come from and where I want to be heading in my life, and it’s good.

It’s all good.





Gone for a good reason

Things are looking up, which is why I haven’t been here much. Not that I’m only using this space to vent and complain and find fault — I’ve just been really busy with really good stuff, and I’m just now coming up for air.

The job is good — extremely busy, and leaving me feeling like I’m constantly behind, but still good. The pace is blistering, which helps to keep me out of my head. It is also forcing me to take a really close look at how I do (and don’t do) things, which causes me to be either less effective or more effective.

I’m learning to be effective.

Funny — I feel like I should know this stuff already, like I’m perpetually behind, and everybody else knows things I don’t. But as it turns out, though that may be partially true, I know a lot of things other people don’t, too, so together, we get it right at least part of the time. I’m learning to give myself space and allow myself to learn. And for those things that I’m certain I used to know about, I’m allowing myself to re-learn them in a different way. Things like being part of an overall team, contributing to the whole, and maintaining my composure in tough times… these are the lessons I have to re-learn, and while it’s frustrating feeling like I to have to start from scratch with things that used to come so naturally to me, I’m giving myself the room to really experience the learning. Before, being a solid, stoic rock who could hold up in the face of any challenge came naturally to me, and I didn’t have to think about it. Now I really have to work at it. As long as I don’t get too tired, I can deal.

And so I do.

On the personal level, I’m dealing, as well. Things have not been easy at home, and the end-of-year family get-togethers have begun. I handled myself extremely well, this past weekend, when my parents came to visit. The old ways of relating to them, which were fraught with tension and conflict, simply didn’t happen this time. I know how my parents are, I know their political and religious views, and I know what to expect from them. Rather than getting upset at them not being different, or being hurt over their behavior, I ‘ran the show’ inside my own head, and I took time-outs and breaks when I needed to slow down and not get caught up in that antagonistic dynamic.

I recognized when I was getting tired, and I recognized when I was getting agitated and restless, and instead of getting all “backed up” and judging myself over it, I let myself be and reminded myself that it is normal for me to become agitated and irritable when I’m tired, so I should just step away and not let myself go down a road I’ve been down far too many times.

There’s more to tell, but I’ve got to get going to work.

I’ve been gone for a little while, but it’s been for a very good reason.


Stamina = sanity

I paid a visit to some members of my extended family a few days back, and I’m happy to report the visit was a good one. I was able to actually enjoy myself.

This visit was in fact very different from past ones, when I really struggled with interactions and had a pretty rough time keeping up with everyone, mentally and physically. My relatives eat very different food than I’m used to — lots of sugar and fats and heavy sauces. And that tends to bog me down and make me feel sluggish… which makes me feel badly about myself.

I often start feeling bad and have trouble interacting after the first couple of meals. I get cranky and irritable and start to snap at people.

But this time, even though I was eating the same food they eat, I was able to keep myself together and stay really positive and upbeat throughout the whole visit.

This is good. And I do believe it has to do with my increased fitness and stamina, since my last visit, over 6 months ago. I’ve had more time to work out, get myself in better shape, and be better fit overall, so my body can handle the extra load of the travel and the change in schedule and meals.

I’ve been “hooked” on the idea that I can build back my stamina after TBI in much the same way I built up my stamina while running track in high school. Thinking back on my freshman year, I never thought I’d be able to work my way up to the 5-mile training runs we did for the mile and 2-mile races. But I did. It didn’t happen overnight, and it took a lot of hard work and practice, but I eventually got there.

If I could do it then, why shouldn’t I be able to do it now? I know I need more stamina; being overtired frays my nerves and makes me very difficult to deal with… which in turn cuts into my self-esteem and makes all my issues that much worse. I can work to change that the same way I got myself in race condition when I was a freshman in high school — starting from where I am, not worrying about being out of shape — why would I start this, if I were in shape? …  Deliberately building up my stamina with regular work and exercise to get myself into “competition shape” that will support me and make it possible for me to live my life without a lot of needless stress and strain that comes from fatigue. When I was 14, it didn’t happen overnight, but with proper encouragement, and gradually working my way up, I got into race condition, and by my senior year, I was really kickin’ some serious ass.

Yeah, if I could do it then, I can do it now. Never mind that I’m 30 years older, and I’ve got a long history of injuries and trauma along the way. The simple fact is, my body is still responsive to exercise and attention. And when I was visiting my relatives and we went out for walks, everybody except me got out of breath walking up steep hills. That felt pretty great, I can tell you. In the past, I was the one who was out of breath and had to slow down.

Not anymore.

And whereas before I would always end up pretty rough and ragged by the end of each visit, this time I kept my act together and was able to interact with my relatives and their friends, as a normal person without the temper and edginess that has dogged me ever since I was a little kid.

Whew — what a relief it is, to be able to spend time with my family and not lose it constantly! My moods are definitely connected with my fatigue levels, and pushing that threshold back, bit by bit, makes all the difference in the world. It’s huge, actually.

There was none of the usual emotional volatility, the temper flares, the anxiety, even the rage that would come out of nowhere… gone. The panic, the tension, the agitation, the quick frustrations, the difficulty sleeping and resting, the tension… gone. And in their place was relaxation, rest, and heightened attention to what was going on around me. I could actually enjoy myself, which is something I have rarely had in that place, for more than 30 years. Amazing.

Now, my neuropsych is keen on telling me that I’m doing better cognitively and emotionally, but I think the real key is my physical fitness. My family is pretty high-maintenance, and they like to be on the go. Constantly. They usually wear me out, and this time they took a bit out of me. But I was able to rest and relax and regroup and take care of myself so I didn’t start to lose it when I was running out of steam. Not having such a low fatigue “set point” frees up a whole lot more energy for interacting in ways that I want — in ways that I choose. It takes a lot of energy for me and my brain to get through each day, especially with my family, so the more stamina I can build up, the more strength and flexibility I can foster, the more sanity I enjoy overall.

And so does my family.

Absolutely, positively, the cognitive behavioral stuff helps. But there’s nothing like having a solid, sturdy physical foundation for your mental health. After all, the brain is part of the body. Take care of the body, and the mind can take care of the brain.

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