When more stuff falls apart

1923 broken down car with wheel off
Sometimes, a wheel just comes off

I’m back.

But you probably didn’t notice, because I’ve been only intermittently blogging here for the past months – maybe a year or so? Life got… interesting. Work has been a drain and a challenge. There are multiple illnesses in my family. And I need to help out.

So, I help out.

I’ve got a disabled sibling with a child who’s in and out of the hospital. I haven’t done a good job, at all, of keeping in touch and offering support. I’ve been trying to do more of that, lately, but it really takes a toll. And now that sibling’s partner is having health issues, as well. So, that’s yet more of a drama scene.

And now my parents are having problems. Serious, possible-surgery problems. I spent the past 4.5 days with them, helping them get sorted out with doctors, getting their paperwork together, talking them through their options, and talking to a friend who is helping a lot. It’s a whirlwind with them. My parents are high-energy, always-on-the-go types, who live a very active lifestyle with lots of friends and activities. It’s exhausting just talking to them, let along living with them for a few days.

But mission accomplished (for now). We got all their paperwork taken care of, got them set up with the medical portal so they can connect with doctors and see their test results, hooked them up with a new smartphone, so they can have a GPS, and also look things up when they need to. And just reassured them that I and my spouse will be there for them when they need us. They’re a 7-hour drive away, so it’s not exactly close by. And my spouse is having a lot of mobility issues, which slows everything down.

I slow things down, too. The fatigue is just crushing, at times, and when I  push myself, I can get cranky and perseverative. I’ll start to grouse and get stuck on a single angry thought and just hammer that proverbial nail, till the board around it splinters. We had a couple of instances where I lost it over what was really nothing much, got turned around and confused, took wrong turns, got combative… mainly because I was bone-tired and worried about my folks.

On the way down, we added 1/2 an hour to our trip, because I got turned around and missed my last exit. My spouse was talking to me about a number of different things that had nothing to do with the drive, and it distracted and annoyed me, at just the time when I was trying to figure out where I needed to turn. I was tired, which makes my brain work worse, and it was dark, which didn’t help. We were also in a part of the country that’s changed a lot in the past years — and we hadn’t been in that area for over two years, so I was even more disoriented. I missed my exit, couldn’t see where to go next, and my spouse was getting really upset at me for not offering anything constructive to the conversation — which had nothing to do with driving.

I appreciate the vote of confidence, that I can do more than one really critical thing at a time, but I wasn’t in any shape to do anything other than drive the car and get to my parents’ place, so as for conversation… yeah, it wasn’t happening.

We ended up having a blow-out fight over it, which often happens whenever we make that trip to see my parents. There’s a magic point around 7.5 hours of driving, when both of us hit our limit, and any discussion we have turns into a lot of yelling.

Fortunately, we did manage to get over it before too long, and we did get to my parents’ place 9 hours after we left the house. At least we were safe, which was the whole point. And we had a good 4.5 days ahead of us to just chill out and focus on my parents.

On the way back, I got turned around again. I was tired from the trip, and I was confused about pretty much everything. I hate when that happens. It’s a little difficult to maintain your dignity, when you’re bumbling around in a fog. I felt like I was swimming through a bowl of thick tapioca pudding with ankle weights on. My brain just was not sharp. I was foggy and fuzzy and my reaction time was really terrible. I’ve been in better shape, but we had to get home, and my spouse was in no shape to drive, either. Plus, they don’t know the area we were in. So, I had to suck it up and get on with driving. Focus – focus – focus. Pay attention. Watch my speed.

And sure enough, 7.5 hours into the drive, things started to devolve. We were trying to figure out where to buy some eggs and milk and bread before going home. We didn’t have anything fresh in the house, so we had to get some groceries. Driving along, I came to a major fork in the freeway and I had to choose between the left branch or the right, so I decided on the right side, then realized a few miles later, it was the wrong choice. My spouse was pretty pissed off, and yelling ensued. Again.

But I remembered what an ass I’d been on the way down, so I pulled over on the shoulder where it was safe, checked my smartphone, found a grocery store that was open till midnight, and used the GPS on my phone to get there. My spouse was pretty anxious and turned around, too, which made them even more combative. And that wasn’t any fun. But when I followed the instructions of the GPS (almost turning the wrong way onto a one-way street, in the process — it was dark, after all), I got to the store by 10:50, which gave me more than an hour to find and buy the 10 items on the list my spouse made for me. I was in and out in 15 minutes, which was good. Heading out again, I took another wrong turn (even with the GPS telling me what to do – ha!), but I turned around and found my way back.

And we were home before midnight… without too much bloodshed, fortunately. I remembered how hard it had been for me when I lost my temper, while we were driving down. It was bad enough that I felt terrible, felt like a fool and an idiot, and my self-confidence was totally shot. But allowing myself to get angry and vent, to let things escalate with me and “defend myself” from my spouse’s “attacks” actually just made things worse. Even though I was totally justified in my response, it made everything harder for me to think, to process, and do the things that would build up my self-confidence, as well.

It’s all a learning experience, of course. So, I can’t be too hard on myself. It’s one thing, to make mistakes and mess up. It’s another thing to give in to the circumstances and let myself blow up… and never learn a thing in the process. I have to just keep my head on straight, study my situation, watch my reactions and behavior, and learn how to manage myself better. What other people do is one thing. But I need to pay attention to myself, to keep myself as functional as possible — based on the lessons I’ve learned from my past experiences.

It was an exhausting trip, and I’ll write more about that later. I’m still digesting the whole experience, and it’s clear I need to make some changes to how I deal with my parents. They need help — and they need the kind of help that only my spouse and I can offer. Everyone around them is pretty depressive, and some of their friends are distancing themselves from them, because they’re afraid of all the implications of a life-threatening condition that needs to be dealt with.

This is very hard for my folks, because they’re so social, and it’s hard for them to be ostracized, just because of illness.

It happens, of course. I could write a book about how that happens. It happened to me after my last TBI, when I couldn’t keep up with the social and work activities I’d done for years prior. People sensed a vulnerability in me, and it made them uncomfortable. They also sensed a change in me that made them uncomfortable. And since I wasn’t always up to the levels I’d been at, before, they drifted away. I talk about that in TBI S.O.S.Self Matters To Others. Who people know us to be, is also a big part of who they understand themselves to be. And when we change, a part of their world goes away. That’s not easy. But it happens. Not only with TBI, but with other injuries and illnesses, as well.

Anyway, I’ve gone on long enough in this post. I’m back from the visit with my parents, settling back into my regular routine, with some changes. I called my folks, first thing this morning to check in, see how they’re doing — and also pick them up a bit. I need to make this a regular routine, because that’s what works for them. Plus, it’s just nice to talk to them.

I also need to take care of myself, because this is even more demand being placed on my system. And it’s not going to get simpler, anytime soon. So, keeping myself in good shape, stepping up and being responsible about my issues… that’s a big part of what I need to do.

As I said, that’s enough talking for now. I’ll have plenty more to discuss, on down the line.

Sometimes the wheels come off. And you just have to figure out how to deal.

Onward.

Concussion symptoms got you down, this holiday season?

head form of metal meshYou’re not alone.

The holidays can be tough for anyone who’s got extra difficulties, due to chronic illness. And with TBI / concussion, sometimes the worst thing is being around people who don’t understand what it’s like to have your life turned upside-down by a “mild” blow to the head.

As I’ve said many times, there’s nothing “mild” about a concussion or a traumatic brain injury. That momentary alteration of consciousness means that something “in there” got injured. And no amount of positive thinking or motivation or … consequences… is going to change the functional ability, unless you have adequate time to recover and rebuild your wiring.

You have to keep the stress down, to do that effectively. It takes time and practice and sometimes a bit of luck, to rebuild what you once had. And being pushed and prodded by people who don’t understand TBI or “get” why concussion can turn your life upside-down, doesn’t help with that.

The holidays can be stressful, to begin with. Then you add all the people, the expectations, the increased pace (a lot of us are racing to finish year-end goals at work, at the same time we’re shopping and figuring out holiday party logistics), and money pressures… and it just gets worse. Cognitive reserves that were already in short supply, get even less… and meanwhile, everybody expects you to KEEP UP! KEEP UP! WHAT’S THE HOLD-UP?!

Some of my own challenges have been:

  • Remembering what I’m supposed to do at work. I’ve forgotten a bunch of stuff I was supposed to do – and I even forget to write it down.
  • Dealing with depression. It comes and goes with me. This year, it seems to be coming more than it’s going.
  • Keeping cool with my spouse, when tensions get high.
  • Staying on my exercise routine.
  • Eating sensibly, and not “stuffing my face” with all kinds of candies and cookies. I’ve done well in terms of candy, because I can’t have chocolate (sets off migraines with me), but I’ve eaten more bread and cookies than I should.
  • Getting enough rest, and keeping on my regular sleep schedule. A tired brain is an irritable brain, and boy, do I get irritable when I get tired. I’ve had a hard time keeping on my sleep schedule, these past weeks, and I really have to concentrate on getting that sorted out when I’m off work next week.
  • Not pushing myself too hard. It’s easy for me to push. I know how to do that. But while it used to work okay when I was in my 30s, now that I’m past 50, it’s just not the same. I need to remember where I am… and act accordingly.

Basically, keeping myself together during the holidays is like an extra part-time job. It helps that I haven’t spent a lot of time socializing with friends and family. That takes the pressure off. But for many, many other people, they don’t have that option. And my heart goes out to them.

Still and all, it will be over soon enough. Just a few more days till Christmas, then another week till New Years (which isn’t much of a holiday for me, anyway). Then I can get back to my regular life.

And start the year fresh.

Onward.

And the list gets a little bit shorter…

Some steps forward are not so simple
Some steps forward are not so simple

I’ve been trying like crazy to whittle down my list of Things That Must Be Done, and over the weekend, I made some good progress.

I actually got the basement sorted, just a little bit more. Many months ago (was it actually a year ago? that’s possible), I un-boxed a ton of stuff we’ve had in our basement for years and years. This is stuff we inherited when my spouse’s parents passed away… stuff we packed up over numerous moves, and then never unpacked… stuff we just couldn’t deal with at the time, and put down on a shelf, to decide about later.

Later never came.

Oh, actually, it did come. The decision part just never followed.

So, being concerned about the “stash” becoming a condominium for mice, I went on a multi-day campaign last year to unbox everything that was packed in cardboard and wrapped in newspaper, and I re-boxed everything in soft paper towels and clear plastic containers that have sealable lids.

And it was good.

Except, for that last piece of the process — the collection of trinkets and tschaschkes that I didn’t have a container for. I put them all out on a big folding table, planning to box them up when I picked up some additional containers. I got the containers. But I never boxed them up. And as a result, I’ve been “threading the needle” in my basement, just to get to the water softener when I need to refill the potassium chloride. It’s been a pain in my a**, and I’ve wanted to do something about it for months — actually, more like a year.

But I couldn’t.

Well, this weekend, I decided I’d had enough, and I decided to make a go of it. I told myself I’d only spend 30 minutes working on the task, and that made it easier. I got myself a nice sweet juice drink, and I took some music with me to listen to while I worked. And as I got into wrapping everything up and placing it carefully in the container, I found I was making good progress, so I didn’t need to stop at 30 minutes.

And in fact, it took me less than an hour to get it all done.

So, I’ve been inconvenienced (along with the workmen who’ve needed to get through my basement to fix the furnace and water heater), for a year, over something that took less than an hour to sort out.

Yeah, that would be me, sometimes.

Because it wasn’t just about the job. It was about this nagging sense of failure I have at everything else in my basement — the vestiges of projects I started and then could never finish… the building supplies and handyman remnants of my past life, when I was so strong and with-it, and I had all these plans that I could follow up on… before I fell and got hurt in 2004.

All the memories of years gone by just flood in, all my failures with family coming to mind, as I look at the items on the shelves, and remember how much I loved the people I’ve lost, and I think about how much of a challenge I always was for them. And it’s remembering all the ways that they (especially my in-laws) were challenges for me — the betrayals, the fights, the disloyalty, the gossip, cutting me out of wills and family news because I wasn’t “one of them”. I wasn’t from the world that my in-laws inhabit, and they’ve always kept me at arm’s distance, even though I’ve never done anything other than love and care for and support my spouse — one of their own.

Going down in the basement and spending time there isn’t just about stuff. It’s not just about organizing. It’s also facing my past — the disappointments, the frustrations — and all the stuff from Before.

But now, at least, I got that piece done. So I don’t have to look at it. I don’t need to constantly crawl over it… be reminded of it… factor it in. I am slowly getting my basement back. One of these years, I’m sure it will be in the kind of shape I want it to be.

Not just yet, though. Not just yet.

Soon over… the vacation that is never a vacation

group-boat-capsize
You try to keep rowing together, but sometimes the boat tips over

I have been “off work” for the past three days. I have another day off work today. I am looking forward to getting back to my regular life.

I have spent this whole time with my parents and my spouse, all of whom are at the center of their own universes, and who expect all the planets (and everything else) to revolve around them. We do things together and try to just be together, but it’s very difficult. My parents are extremely rigid and judgmental, and my spouse and I have a very different life than theirs. They can’t seem to simply let anyone “be”, and that adds stress and tension to every interaction.

Why can’t we all just get along?

I’m not hurting them, by having a different kind of life. And I really don’t need their judgment / pity / attempts at support. They look at my life and worry… but I’m doing really well. I’m just not doing it all like they would. So, that means I’m doing things “wrong” in their minds.

In my early adulthood, I avoided my family like the plague. They didn’t understand me, and they really gave me a hard time… about everything. They always treated me badly, when I was growing up. They continued to treat me like I was mentally deficient (thanks to my TBI issues, which were never properly addressed), even into my adulthood… the still do it. And they did not approve of my spouse, at the start. Too bad for them, I was married anyway. But my independence did not help our relationship. And if anything, it just made them think I was more mentally compromised.

It has been a journey, coming to terms with each other. We have all reached a state of tenuous balance, over the years, and now my parents are getting older, so there is all the more motivation to stay in touch. None of us lives forever, and since there were so many hard years, it’s really precious to have happy times with them. Still, it is not easy for me to deal with them. I have to be on constant guard, because my mother has issues with physical movement, and she slams into things without meaning to – one of the things is often me, which is painful. My father tends to attack what he does not understand, and he’s very “heady” and loves to discuss philosophy and religion. But he has a very narrow view, so it’s difficult to discuss anything objectively with him without it turning into an argument.

So, it’s a constant balancing act.

At the same time, my spouse is declining and is becoming more and more demanding. And when my parents are around, they become even more stressed and demanding. They constantly harangue me about doing this and that — asking everyone to do this and that and the other thing. All their demands and extra needs for attention come at a time when I am even more taxed than usual. My cognitive reserve gets drained very quickly, and I end up yelling. Upset. And looking like I’m the unstable one, when everyone else around me is being antagonistic and confrontational.

I am caught in between everyone with their demands. But I’m the one who ends up looking like the one with the problem.

When you love people, it can be extremely taxing. And painful.

You just have to decide if it’s worth it.

I know it is worth it. It’s just a lot of time and energy. At least today, we have some time to ourselves. My parents are going back home, first thing this morning, and my spouse and I will have the day to ourselves.

I’ll get some more sleep and do some more thinking about how I want my life to be. And take a break.

From it all.

And then I can get back to work tomorrow… and get a real break.

Keeping out of the slump

Gotta keep from getting pulled down.
Gotta keep from getting pulled down.

December is upon us.

Days are getting shorter — and colder. Nights are getting longer — and colder.

This is actually an excellent time of the year for me, when I can focus in and really think about where I want my life to go, and how I want to live it.

So long as I can keep out of the slump, which invariably comes with the end of the year.

Like many people, I look back on the past year and measure myself against my intentions of 12 months ago. Last year, this time, I was pretty sure how things were going to go. I had a 2-3 year contract, I was getting up to speed with my job. I was adjusting and fitting in pretty well. And things were looking up.

Till they weren’t. And then they were, again. My contract changed – cut short by a change in business plans that nobody really told me about. That freed me up to go looking around for What Else I wanted to do. And I found a fantastic opportunity doing the kind of work I wanted to do.

Now that may be changing, as well. I really don’t know. Because just like last year, they’re not telling us anything. And people at work are getting down and depressed. Nobody is wishing each other happiness in the holiday season. I wished everyone Happy Thanksgiving in an email before I left, last week, and only one person responded. Some would say, “Rude”. I say, “Existential crisis”.

So, I’m a little down in the dumps, these days. I’m drifting in and out of depression.

Fortunately, I’m not depressed as frequently as I used to be. I used to really battle depression on a regular basis, especially during the holidays. Some years, I actually wanted to bring my life to an abrupt end. Clearly, I didn’t, but in years past, I wouldn’t have complained if I’d had my life cut short.

It’s been a while since I’ve felt that low, and that’s helped me just get on with my life.

But in a way, it’s more problematic now, because I’m out of practice, dealing with that stuff. And now when I fall prey to depression, it feels abnormal. Disorienting. Like there’s something wrong with me… When really, it’s just the time of year, and my schedule and routine are both out of whack.

I’ve been having headaches again. Probably because I haven’t been exercising like I should. Or drinking enough water. I need to get back to that. I walked the stairs a few extra times yesterday — three long, steep flights — so that’s progress. I’m also recovering from a week of being off my schedule, not having ample down-time, being over-social, and dealing with people’s “stuff” that I usually don’t have to mess with.

And things feel like they are dissolving around me. Job changes — who knows what will happen after they start the “business transformation” in earnest, at the end of next week? Personal changes — not having a doctor, and needing to find a new neuropsychologist. Money challenges. Marriage challenges — as my spouse continues their downward spiral that was arrested for a week, and now is back to the usual. And all the political stupidity that goes on, with everyone running their mouths and apparently making no effort whatsoever to try to understand others, or amend their own behavior to make a positive difference… or avoid war (of every kind).

Sigh.

I guess I’ll just take it day-by-day. Just handle what’s in front of me, and take as good care of myself as I can. I’m kind of losing track of what I’m doing at work, and it’s bothering me. I’m very scattered… partly because I’m anxious about what’s to come, and I’m tired. I have my notebook with my items I’m tracking and focusing on, and I need to fall back to that again, just keep it simple, and focus on the essentials.

And move. I don’t move enough at work. I work in a big building. I could take long walks to clear my head. I think I’ll do that today.

I also need to break up my day, when I have long periods of uninterrupted time. If I let myself just zone out, it’s not good. I need to keep myself moving, keep myself on track. It’s a mistake to let myself just zone. I need to really keep discipline in my life – go to bed earlier and let myself catch up with myself. It was a really long week, on the road, and I still need to recover.

So, there it is. I need to get back to my routine. Keep up the house. Do the chores, take care of business. I feel better, when I get things done. I also need to do things in shorter spurts — intervals of activity, interspersed with rest. Just use my head — and make a point of keeping disciplined through it all.

I have plenty of reasons to be depressed. And I know that there are biochemical reasons that people are depressed, including myself. But I know how to deal with them. I know how it happens with me. And I know what to do about it.  I know what turns it around and gets me out of my slump. For me, biochemistry explains things, but it also shows me the way out. And the way out, is to keep to a schedule, really think about what I’m going to do for my days, be present in the moments, and stay steady. Stay clear. And know my limits, so when I need to take a break, I do just that.

Yes, things are a bit depressing, right now. I just don’t think sinking into depression is the best use of my time.

Not by a long shot.

So, that being said… Onward.

All the artificial timelines and time-outs

Got back last night before 9 p.m. Pretty good, considering we got on the road after 1:00. Driving was good, but this is the last year we’re doing that particular trek. I will save $20/week towards the plane tickets and rental car next year. We’re not doing that marathon drive again.

Both my spouse and I are practically crippled from all that sitting. Yes,we stopped and got out and moved around. But it’s not the same thing as moving – which I will be doing a lot of, today, I believe.

Someone commented here that holidays are invented by men, and it’s true. They are arbitrary assignments of “time off” from the usual grind, to do something different, so we don’t lose our minds from the drudgery and the monotony and the insane political games people play. And the conditions they take place under, only serve to make us glad we’re back in our grind, when we return. I know I’m glad to be going back to work… which is kind of a bizarre idea, since the idea of being cooped up in an office for 8 hours today really makes my skin crawl.

Other than making a living and giving me a chance to interact with people in a structured environment, I’m not sure what purpose it serves. And this is with a job I actually like… after years of detesting my work situations. The whole 9-to-5 thing is old. I know how to do it. I’ve proved I can do it. That’s settled. Time to look into something different.

While driving home, I was fantasizing about just dropping all this and going to live off the land. I think that would solve a ton of problems. Raise my own food, hunt my own game, fish and stock up and save. So long as I have access to a good lake that has fish, as well as a possible trout stream, and I had some space to garden, and a shelter against the elements, I think I’d be fine, actually. I wouldn’t even need to hunt big game. I could live off rabbits, squirrel, fish, and plenty of wild plants. And if I had a fenced-in area, I could also grow plenty of vegetables. If I didn’t have a mortgage to pay, my life would be very, very different, I can tell you that.

But that’s probably not going to happen in the near future. I have time to plan for it, to learn what I need to learn, and  get all my equipment together. For now, though, it’s back to my regular routine, back to going through my days making the best of what I’ve got.

It’s not bad. It’s just not really what I want — which is freedom.

I’ll have plenty of that in the coming weeks, though. The holidays may get crazy for some, but we are DONE with all the travel, and we’re going to have a nice quiet holiday season, getting together with friends. I’m going to have plenty of time to keep up with my sleep, thanks to minimal extra-curricular activities and passing on all the holiday parties and I avoid the malls. I think the holiday madness may actually even pass me by, as I step aside and steer clear of the hordes. I’ve seen the Black Friday videos. Yah, no thanks.

My family obligations are done.

And my little officially sanctioned time-out is done.

Now I can get back to my life and settle back into it. And just let the rest of the world go by, as I construct the life of my choosing.

Onward.

And in the end, we learn…

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

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

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

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

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.

Onward.

 

 

Annnnddd we’re back

laugh-at-confusionToday I am up early. I woke up early, and despite needing to rest, I could not get back to sleep. So, I got up. And here I am. Thinking about Thanksgiving and the lessons I’ve learned from the whole experience. It’s just experience, after all.

Thankfully, the mechanic came through, yesterday. Woot. They finished up the repairs to the disabled van yesterday afternoon, and now we’re good to go for the return trip home. I don’t have to renegotiate my vacation plans with work. I don’t have to explain an unfortunate adventure to my parents, and shift the times when we were planning to see aging relatives. I don’t have to calm down my spouse over every little thing that comes along. They can relax, now.

Well, supposedly. On this trip, they have been on edge for much of the time. Their cognitive impairment and behavioral problems are really standing out, their anxiety really running the show.They’ve yelled and cried and harangued and exaggerated and done a very poor imitation of someone who is 100% functional.

And their side of the family, ironically, are the ones who are having the most trouble dealing with their behavior. My side of the family practically oozes compassion for the needy and marginalized, and my spouse is acting very much “out of bounds” of respectable behavior. With my parents, my spouse’s difference are not as pronounced and extreme. But at my in-laws’ place, their behavioral issues really stand out. And it frustrates and angers them.

I don’t think my spouse’s family realize that there’s some cognitive impairment going on, and I’m not comfortable telling them, because they just don’t handle that stuff well. They’re very mainstream — different from my parents — and they don’t have a lot of diversity where they live. People who are cognitively impaired are “retarded”… or deserving of pity, rather than respect. There’s a lot of superstition here around the brain, which just makes things harder. Plus, they have very aggressive, mainstream ways of dealing with things — basically, take a pill, have a drink, follow along with what everyone else is doing, and don’t question too closely how things are done. If a pill or a drink won’t fix things, they sometimes believe a gun will. And they don’t have a lot of patience for all the gray areas that surround brain injury and cognitive impairment. Plus, they do not know anything about my spouse’s cognitive issues. We’ve never told them, and I doubt I ever will. Unless I have to. They just aren’t much help, when it comes to that stuff.

Maybe they would be, if I told them and they learned, but I just don’t have the patience or the fortitude to manage their adjustment along with everything else.

So, it’s a multi-source challenge, coming here. First, I have to deal with  my spouse. And then I have to deal with  my in-laws. And I have also had to deal with the broken-down van, negotiating social situations where I cannot understand what people are saying to me — because of their accent, and also their pacing. I’m not hearing clearly. And I’m tired. I’m slowed down, and it makes me nuts.

All the while… I do my best to keep calm. I hold firm and don’t let my head run away with me. It’s not easy. And it’s not verbal. When I’m pressed to use words, everything gets scrambled up, and I get angry. Enraged in passing moments. Because when everything is hitting the fan, and I’m pressed to verbalize, the solutions I can see in my head start to dissolve. And I lose my way.

I hate losing my way. Especially when things are tough.

But of course… It could have been worse.

The van repairs could have cost me three times as much — essentially draining my bank account.

The work could have take three days, instead of the better part of one day.

The one repair could have created even more problems that rendered the vehicle undriveable.

And all the while, my spouse could have had a nervous breakdown, as they have done several times in the past, while visiting this area, so full of unresolved issues, so full of pain and excruciating family memories.

But none of that happened. And now I don’t have to carry that with me, anymore.

Of course, the residue is still there. I am tired out, worn out, wrung out. I’ve been tired ever since the start of this trip… but I’m not sleeping well. Oh, the pain. Holy crap – if I don’t move regularly throughout the days, I am in so much pain. And people here don’t move. They sit in front of televisions. They sit in their cars. They sit in front of computers. They don’t move around, except to move from one seat to another. And my left hip and back are killing me. Plus, the mattress… Good lord.

I’m dizzy and slowed down, with a reaction time about half of what it usually is. I’m not hearing very well, but I am extremely sensitive to noise. It’s like I’m walking around in a bubble of static, floating 6 inches above the earth in a jittery envelope of electro-charged plasma. Light sensitivity is less of a problem for me, right now, but the whole spoken word thing is a real challenge. And when I stop talking, everybody gets nervous. Because that’s how they allay their fears — by talking. And I’m not doing that.

Also, when I get quiet, they seem to think I’m going to blow up. Because in this family, the signal that someone is going to fly off the handle, is when they get very, very quiet and don’t say more than a few words at a time.

I’ll get some relief today when we drive back to my family, but that’s not much solace. My side of the family are the polar opposite of this family here — in constant motion, constantly thinking, constantly interacting, no television, just a lot of heady talk. Most of it about God.

Oh, great pain and suffering… great wailing and gnashing of teeth!

Then again… Ha. I just have to laugh. It’s kind of ridiculous, this whole thing, and what I really need is to keep my sense of humor about me…. And get myself out of my foggy head.

Good Lord. Everything gets so heavy, here. And when we leave, I’m sure the tongues will wag about all the things that are wrong with both me and my spouse. It’s recreational, the fault-finding and judgment. It makes people feel better about themselves and their lives. So, in that respect, it serves a purpose. For them, anyway.

It really has nothing to do with me. My life will go on, regardless of what others think and say. They’ve been talking about me — and my spouse — and both of us together — for as long as we’ve been together, and that has never kept me from living my life. Not one bit

Am I rambling? I feel as though I am. The sun is rising over the mountains to the east, and I’m completely out of it. But life goes on. I know to be careful. I know to take my time. I haven’t felt this bad in a long time, so that’s something to be grateful for.

There’s a lot to be grateful for. And in the end, it’s really just a matter of where you put your attention — on the good, or on the bad. Bad will always happen. It can’t help BUT happen. If nothing else, I’ve got a hell of a story to tell.

Onward.

Back to regular life – for now

Tomorrow I’m back to my everyday life… waiting for the call to see when I need to travel for the funeral. We’re all guessing it will be this coming weekend. We’ll see.

Regular, boring everyday life never looked so good. I can get back to my routine, my usual activities, my usual interests. And I can keep moving forward with my own life in my own way.

And that’s good.

I talked to each of my siblings today, and we all have our own perspectives on things. We also have our own priorities. We’ve all literally gone our separate ways, and coming back together next weekend will put us in rare proximity to one another. That doesn’t happen very often.

But for now, the day is done, and I’m about to head to bed. I slept all afternoon and then got up to go food shopping and just get out of the house. I’m starting to feel human again, but it’s going to take more than a few hours of sleep to get back to balance.

And then more travel…

The best I can hope for, is to keep steady and predictable and not go off the deep end because I’m tired and frustrated. Just keeping steady is the big thing.

So, I shall. As best I can.