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.

Reset NOW

I just came across this video – pretty inspiring

No matter what people may offer you, if it means you have to sacrifice yourself or abandon your convictions, no way no how is it worth it.

Back from my trip to see my family, I am reminded yet again of why I left. The price of admission to the community my family is part of, is way too high. You have to abandon your individuality to be part of a larger group, and that doesn’t sit right with me. My siblings have all pretty much kept the continuity going, living their lives as my parents expected them to — with a few minor exceptions, here and there. I’m the black sheep. I have broken out. And looking at how things have developed, back there, I’m so thankful I stepped away when I did, and managed to keep my individuality intact.

My family and their community have specific ways of doing things that they believe are correct and right. Everything from how you tend your garden, to how you maintain your home, to how you walk and talk, and when you light the first wood fire of the year, are watched and commented upon by the neighbors. Almost every aspect of life is dictated by a combination of religion and tradition, and those who “buck the system” are not welcome. Tolerated, but not warmly welcomed.

And while that rigidity gives them a sense of continuity and comfort, it doesn’t leave a lot of room for growth and positive change — unless that growth and positive change is part of their world view.

If there is a problem in front of them that can’t be solved by the same old thinking, then that problem stays stuck.

Like the problem of the hoarder in the family that nobody ever talked about. And nobody could ever help.

Hoarding is a complex issue, and it has a lot of different aspects and causes. There’s the perfectionism, the personalization of objects, the inability to let things go, because of the emotional connection to them, the inability to see a problem (on the part of the hoarder), and the inability to creatively think about options and choices for how to live differently.

I never realized, till this last weekend, just how badly off “our hoarder” was. Nobody ever talked about it in depth, nobody ever took steps to address it directly. The standard response was through prayer and support and trying to talk sense into the hoarder — and to model a better way to be.

Nobody ever addressed the neurological issues they had — which are obvious and several — and nobody ever addressed this in a systematic, scientific way.

What a friggin’ waste of a life. “Our hoarder” is well into their 70’s, and they have lived in the midst of their own filth for some 30 years. And I never fully realized the extent of the issues. Had I known, I might have been able to do something. But now the past is done. The wrecked house has been cleaned out. And “our hoarder” is in a retirement home, where it is literally impossible for them to collect any more crap or allow their space to become trashed. Cleaning folks come in every week like clockwork. So, with any luck, the will get the help they needed all along.

30 years have gone by, leading up to this moment, and my relative has lived in their squalor all that time, unbeknownst to me. I have never been in a position to actually help them before, because I had so many issues of my own. And now that I am on my feet again with a much more robust set of tools and skills, I am in a position to help. But their situation has changed, and help with that part of their life isn’t necessarily needed anymore. At least from me.

There is literally only so much I can do for my own family. They are set in their ways, and I’m not sure they will be able to change. Outside my own family, however, I can do some things. Like living my life to the fullest, showing others how hope is possible, and keeping the faith each day in my own way.  I can reach out when and where it’s possible, and hope that I have a positive influence. I wish it were possible for my own family, but sometimes it’s just not possible.

So, I do what I can, where and when and how I can. And do my best to not take responsibility for others’ choices and actions.

You can’t save everyone.

But you can save yourself.

And it’s time for a little reset in my life — to take what I’ve learned from the past week, and put it into positive action in my present and coming weeks, months, and years. I need to sleep… and hope that my system will “integrate” the info from the past days into something useful in the future.

No sense in letting all the lessons go to waste, right?

Okay, time for a nap.

Fine when I get there

In praise of stillness
Peace be with you.

So, I’m back from my trip to see my family. My grandparent has not yet passed away, and I got to say good-bye to them while they still recognized me, so that is a real blessing.

And that’s all I’m going to say about that. It’s deeply personal, and I don’t have words to express everything I’m feeling.

What I will talk about, is how things turned around once I was there. It can be so difficult for me to get going with new undertakings — including making a sudden trip to go see my family during an emergency. And it was so difficult for me to let to of the reins on my projects at work, so other could step in and pick up the slack during the final days before these deadlines. It’s a tough one, to A) of all get my head around everything that is going on, put it in some semblance of order, and B) communicate what needs to be done to people who are helping. I’ll head into work early tomorrow to get a jump on the week.

I’ve got some additional work to do today, connecting with my siblings about the situation and next steps. And resting up from the trip. It was pretty grueling — a lot of driving, a lot of dealing with people’s “stuff”, a lot of food that bears no resemblance to what I choose to eat on a daily basis. It’s the world I left behind… and I left it for a reason. So going back to deal with folks when they are arguably at their worst, and I am certainly not at my best… that’s a real learning experience.

But in the end, that’s what it all is — it is all a learning experience, and as long as I continue to look at it that way, there can’t be anything wrong (or even right) about what I’m choosing, what I’m doing, what I’m going through. So long as I keep going and continue to learn and grow, what can be wrong?

It’s the giving up that’s wrong. It’s the quitting that’s wrong. And now that I have tools and skills built up from the past years of active TBI recovery, I don’t have to quit anymore. Once upon a time, that’s almost all I did — start, and then quit.

Not now. Not anymore.

So, today being Sunday, it’s a day of Rest. Thank God we moved our clocks back, so I get an extra hour today. Good timing. I got a bunch of chores done last week before we left, so I wouldn’t have to worry about them when I got back, so my day is all clear of any regular requirements  — except getting dinner. I’ll need to go get that. But I need to get out in the day, so no biggie.

The main thing, is to really take good care of myself today. Countless times, when I have pushed myself to overcome challenges, I’ve worn myself out and ended up really shredding my most important relationships with the aftermath — when all has settled down, and I’m starting to get some strength back and I’m not just on autopilot, my system backfires, and I end up flipping out over every little thing, saying things I can’t take back, and basically being a terror to everyone around me.

I do NOT want that to happen to me over the next week. It’s going to be grueling, with work being extremely pressurized over deadlines for the next two weeks, and some pretty significant projects that are coming down to the wire.

So, I’m going to do the following to make my life easier and improve my chances of success:

  • Make lists, so I don’t have to think about things.
  • Pace myself – keep an eye on my schedule, give myself extra time to do complicated things, and jettison some of the pointless “recreational” things I don’t need to bother with.
  • Get plenty of rest – sleep when I can and take frequent breaks.
  • Get more exercise – to keep the lymph moving and loosen up my stiff, painful, creaky bones, after all that driving and sitting.
  • Drink plenty of water – practically flood my system, in fact. Flush it out and get the junk moving through and OUT.
  • Do the things I know are good for me, and avoid the things I know are bad for me. Enough said.

So, I have a plan. After I finish my coffee and check my email, I’m going back to bed. I’ll get up this afternoon to check in with my parents and talk to my siblings. I really need to pace myself, today — and all this week and beyond. It’s bad enough when sad things happen, but mismanaging myself just makes matters worse.

The main thing is, keeping my head on straight and not getting all freaked out over anxiety and fear about what I may or may not do properly. The most difficult part of the trip down, was all the uncertainty, and not knowing if I’d be able to handle myself well, in the face of death and sadness and tragedy. But once I was in the midst of everything, I was actually fine. The added demands really pushed me to step up — and step up, I did.

The most significant danger is actually not when things are getting tough — it’s before, and then after. Before, I am anxious and have no idea what’s to come, exactly. After, I am dog-tired and am short on impulse control and emotional management abilities. In the thick of things, I’m actually fine. It’s getting there — and out again in one piece — that’s the problem.

On the bright side, it’s a really nice fall day, overcast and moody and perfect for resting and relaxing and reflecting. I’m back in my own home, sleeping in my own bed, and I get an extra hour to rest today. I think I’m going to do some reading… pull out some of the books I haven’t had a chance to read, poke around a bit… and just settle in for a long day of good rest.

I really am very fortunate.

Adapting… and realizing how much good it does me

I have had a few days to “decompress” after my trip to see my family. Two full days of driving — 8 hours there, 8 hours back — did a number on me, and I’ve been foggy and dull since I got back. Also, the pace was relentless while I was there. My family goes at top speed, pretty much all the time (except when they’re sleeping, which fortunately happens more often, these days).

So, all in all, it was a very challenging time — a challenge which I nonetheless rose to, with all good results.

The thing is, now that I’m back, I need to re-acclimate to my everyday life, which is very, very different from how things are at my parents’ place. It’s much quieter here, much less active, and a lot more contemplative. It’s ironic, because my family is very religious, and they consider themselves very spiritually connected. Yet they are so busy going-going-going, they hardly have any time to deeply consider their thoughts and their actions and the consequences of them. I love my parents dearly, and it pains me to see them declining — a little more, each time I see them — because they simply won’t take a close look at what they are doing and eating and drinking and living, and accept what it’s doing to their health and well-being.

My father considers himself a self-made man, which is true in that his diabetes has worsened because of the choices he makes. He thinks he can wish the condition away, but his actions and choices of foods make that all but impossible. My mother considers herself a socially connected person who cares deeply about others, while at the same time she buries herself in busy-ness whenever close friends of hers are in trouble.

I got a good look at my potential future, visiting my parents. And I also got a good look at how things could have turned out for me, had I taken the same path as my siblings. My brother has done well for himself and his family, yet he’s living in a place that is hostile to his deepest beliefs and convictions. My sister-in-law once had big dreams, though over the years she’s limited herself more and more and more, till the thing that means most to her is having a part-time job that lets her take care of house chores. Their kids are doing great, which is gratifying, so there is a whole lot of good that’s come out of their choices. And yet, I wouldn’t trade my life for theirs for any amount of money. Parents make sacrifices for their kids all the time, and I have no argument with that. I do have a problem, though, with completely throwing big parts of yourself and your hopes and dreams and internal convictions out the window, to fit in and be safe.

Of course, people do that all the time. That’s for them to live with. It’s not for me to judge. For myself, though… I choose something different.

And coming back from the trip, I look around and realize that the life I have really does fit me exactly. I’m doing great. I have my limits and my challenges, but I can adjust to overcome them. I have been in a lot of pain for the past few weeks — not headaches, but a lot of back and leg pain — and my mind has been foggy and dull. I have forgotten some things I really needed to remember at work. Other people needed me to remember them, too.

I made a couple of really unfortunate choices at work, the day I was back, and I feel like I’ve been scrambling to catch up, ever since. I mean, one of the mistakes I made was the exact opposite of what someone had asked me to do — and entrusted me with — just 15 minutes before. And I dropped the ball. I was supposed to “buddy up” with someone new at work, and have lunch with them. Their usual buddy had a lunchtime meeting they had to attend at their desk, so they couldn’t do lunch. I managed to keep it together and get the new person down to the caf, then for some reason I spaced out and went to sit in a different area — completely forgot about them and my mission to buddy up… I basically left them to fend for themself among virtual strangers, which would have been a crappy thing to do if I’d intended to do it.

Of course, I didn’t. But that’s what happened. Instead of staying down in the caf, I went back to my desk… across from the person who had asked me to sit in for them. And I didn’t remember what I was supposed to be doing until after I sat down at my desk and realized that I was sitting across from the person who’d asked me to fill in for them.

So, I was feeling pretty stupid at that point. Talk about dull and clunky. And then I spent the rest of the day trying to figure out how to make up for it. I still am. I can’t very well go to the person and say, “Dude, I totally forgot all about you,” because how would that make them feel? Un-memorable, that’s how. And I can’t explain that I have short-term memory issues, especially when I’m exhausted, because that’s going to hurt my prospects at work.

All I can do now, is adapt and go out of my way to be helpful as best I can, and hope that I can develop a decent working relationship with this new person — despite that first faltering interaction.

Realizing how dim and dull I have been, I’ve been turning to my lists again for help, and it’s really doing me some good. I’m actually getting things done, that have escaped me for weeks. I finally got my COBRA insurance papers together and sent them off with the check, so my coverage is re-instated. I had read the paperwork when I first got it, but I missed the part about how you’re not actually covered by ANY insurance, between the time when your coverage ends, and it’s re-instated retroactively. So, the doctors visits that have been happening may not be covered by my COBRA. And I may need to pay out of pocket for them.

That really upset me, and I was thrown off all day yesterday. I also got anxious about the possibility of some medical emergency happening. I expect my coverage to be reinstated next week, and the idea that something serious could happen between now and then was weighing heavy on me.

Then I decided to just roll with it and let things happen as they will. I’ve got no credit card debt, and if I need to set up payment plans, I’ll do that. I’ll figure something out. I’m making enough money now to hold me in good stead.

I also need to sort out some other medical coverage stuff that is so confusing to me, I don’t even know where to start. I have been sweating it out, thinking I’m never going to figure any of it out, and it’s kept me from stepping up and doing something about it. The thing is, I’m not alone in figuring it out — at least, I don’t have to be. There are toll-free numbers for people to call, and I am planning to do that. I just need someone to walk me through the details and explain them to me. It could be that I incur a penalty because the timing of leaving my job and terminating my regular coverage and getting signed up for new plans is all screwed up, but at this point, I’m not sure I care. I’ll just make the money I need, to get by.

Or I’ll adjust in some other way.

The idea of having someone to talk to about this, is really helping me a lot. I’m not alone. I don’t need to figure it out by myself. Nobody is going to know how impaired I am, if I’m asking for clarification. I’m sure even the most brilliant people need help with all this insurance complexity. The whole system is convoluted and filled with veritable land mines, and it’s been that way for a long, long time. I just have to use my head and keep moving — and use the help that’s offered.

That being said, I need to set up time for my spouse to give permission for me to talk to the insurance folks on their behalf. I have to figure things out for both of us, and since my spouse is a few years older than me, issues like Social Security and Medicare are on the horizon. Not sure how that happened so quickly, but there it is. It’s hugely confusing for me, but I have to handle it, because my spouse cannot even begin to approach all the details — they’ve got even more impairments than I do, and their biggest one is panic-anxiety, which pretty much keeps them hostage and immobilized in a self-perpetuating prison.

So, I need to get on the horn with the SSA and other folks to talk about what’s to come on down the line, eventually. There are fees and penalties or some-such, if we do things wrong, and I think we already have stepped over the line. Oh, well. I guess I’ll pay the fees and penalties, then. The good news is (I think), my spouse has been so marginal for so long, not paying into Social Security, but 10 years out of their entire “career”, so that if the government takes a percentage of their SSI payments, it’s going to be close to nil. There are some benefits to living on the margins, I suppose.

Anyway, it’s all a grand adventure, and even if I am dull and foggy and in pain and out of sorts, I have tools I can use to get me by — making lists, and also getting someone on the phone to help me understand everything. There’s also the Web… there’s that.

Speaking of which, I need to sign off now and go check out some websites, in hopes of making sense of things. I suspect I’m going to be a bit screwed by the system, because I don’t know the ins and outs and I don’t have a lot of people in my life who are in the same situation who can help me avoid penalties and fines and all that. But I’ll adapt. At least I have my life, I have my independence, and my life is pretty much how I want it to be.

It’s all good. It really is.

Onward.

I must be getting better… a lot better

Sometimes you have to bring your own light

Got back last night from my return drive home. Found my spouse sitting in a dark house, watching television. Now, that’s depressing. They were really happy to see me… but it only took an hour till they started digging into me and my family about in-law pet peeves.

That’s par for the course. I’ve been hearing this same litany of complaints against my side of the family for over 20 years. The thing is, it hasn’t bothered me in the past, and it was kind of a semi-annual ritual for my spouse to complain bitterly about my family being the way they are. It really is my spouse’s loss. My family isn’t perfect — whose is? But they are my family, and they helped make me what I am, so you can either spend your time getting all revved and riled about something that cannot and will not change, or you can look on the bright side, find the things that are good and positive, and focus on them.

That’s what I choose to do, and it has made life more than tolerable for me. I’ve been able to find good in even the most miserable conditions. Now, miserable is miserable, for sure. But there’s always something good to concentrate on, that keeps you from getting all worked up and unhappy about things.

In the end, it’s my spouse’s loss that they can’t see the good in my family. And the fact that I’m not willing to dive into that old back-and-forth, and I managed to keep it from sliding downhill into an all-out fight… well, that’s signs of progress.

I need to remember that my spouse always starts to get “revved” around midnight, which was when we started talking about the trip. That was a killer for me, because I should have been in bed by then, but they wanted to find out about the trip and hear the details. The thing is, because they start to “rev up” around midnight, they wanted to fight, which made it really difficult for me to wind down and get to bed. It was just a poor choice on my part. The poor choice was all about me forgetting that my spouse gets anxious and aggressive and wants to fight, around midnight, and giving them the benefit of the doubt.

Mistake. Note to self — no matter how optimistic you may be about your spouse’s mental health at midnight, every single time, they prove you wrong, and you end up getting the short end of the stick. As in, not nearly enough sleep — like five hours or something like that. If I’d had my wits about me, I would have just turned in and said we’d talk about the trip today, after I had some time to let it all sink in — and catch up on my sleep.

Also, last night showed me pretty clearly that I really am getting a lot better. I’m in a good space… while my spouse is not. If anything, they’re getting worse. They really do seem to be slipping away from me… fading away, wallowing in outrage and upset, and just getting worse and worse. I think what’s happening is that they are blowing out their system — they’re not watching what they eat or getting adequate exercise, and because of that, their vascular system is not holding up. So, when they get all worked up over things and their blood pressure gets up, it blows out the little capillaries and connections in their system — their brain, possibly their kidneys — people have talked to me about this, and I didn’t really want to come to terms with it, but being away for a few days just makes it all the more obvious to me that they are not well.

But I am.

And I’m getting better. I’m getting much, much better — each and every day. I’m focused on it. I’m working at it. I’m making it a top priority. Part of my motivation is seeing how sub-par my spouse is functioning. Seeing them going downhill so steadily is a great motivation for me to do more to keep myself fully functional — and even improve. I know in my heart and mind that we have more “say” about what happens to our bodies and our brains, than popular conventions give us credit for. I also know in my heart and mind that even if I am going downhill, it’s not going to be by default. They’re really going to have to work at killing me, to take me down.

I’m not going down just because “that’s what happens” when you get to a certain age.

Another thing that’s really motivating me, is seeing the rest of my family and seeing how they’re living. That’s not how I want to live, at all. They are constantly on-the-go, and it’s really exhausting. They just go-go-go, and they don’t spend a lot of time to stop and think things through. They’re all on auto-pilot, doing what everyone around them does, and that’s pretty depressing in its own way. They do have connections with a larger community, and they do have a strong sense of belonging, but the community they belong to, leaves a lot to be desired, in my opinion.

If their community were so great, I’d still be there. Note well, that I am not.

So, on both ends, I can see that I’m doing well. I’m doing better than ever. And while things are rough and rocky, here and there, the fact that I can see that things are not how I want them to be, is a great sign of progress.

Once upon a time, I would get sucked into the fights and arguments and bitch-fests with my spouse, and I’d feel all the more alive and invigorated from it.

Once upon a time, I could not spend any time around my family without wanting to kill myself. Literally.

Now, neither of those are true. I’m finding a healthy middle ground, and it’s good.

Now, it’s time to get on with my day.

Onward.

 

 

 

 

 

 

 

 

 

When bad things happen to good people

The road ahead is not always clear
The road ahead is not always clear

Oh, this is upsetting. My neuropsych is having potentially serious health issues, and we won’t be meeting next week.

The upsetting thing is not so much that I won’t get to meet with them. It’s that they are having health issues. Their situation is not certain. You like to hope for the best and stay positive, but with the healthcare system as it is, you never know…

I really got thrown for a loop yesterday. When I first talked to them to cancel our appointment, I was fine. I was feeling very positive and supportive, and I think I helped them feel better. I made them laugh a little, which always helps. Then I took a nap later in the day, and when I woke up, I was very, very sad. Because if something happens to them, so they can’t work anymore, I had the distinct impression that I will go back to being alone.

And that made me so sad, I started to cry. I hate when that happens. I suddenly felt so alone, so small and so vulnerable. I felt like I was five years old again, being left behind as the school bus going home pulled away from the curb, leaving me alone and not able to get back home from my first day of kindergarten. In the past six years that we have worked together, my neuropsych has really been the only reliable person in my life who has not judged me for being different, who has understood the challenges I’m up against, and who has really cheered for my advances, instead of just treating them like something I should have been able to do, all along. If I lose their regular presence in my life, it’s going to be a real blow.

I felt kind of crappy, feeling that way, because it was all about me. I’ve been working on that tendency to always think of myself first and not pay any attention to anyone else’s needs. But I’m also feeling upset that this is happening to them, because they are a really good person who has been on the business end of life’s cattle prod many times too often, and I hate that they have to go through this — especially as they are nearing retirement age, and no one should have to spend their later years in terrible physical condition.

I wish there were something I could do, but my neuropsych is a private citizen, and it would be inappropriate for me to try to contact them outside our clinical relationship. I feel very helpless – life is just doing what it’s doing, and I can’t really do anything to stop it. All I can do is adjust. And take care of myself.

I hate feeling selfish like this. It really bothers me, that my first thought is “What will happen to me?” I know that is not a reflection of my “highest self”. I am better than that.

So, I am doing something about it, and I am searching online for volunteer opportunities, to reach out and help others. I don’t want to be “that person”. I want to be better. I know how good it makes me feel to be reassured and assisted with things I don’t know about. I’m very independent, and having additional help from experts gives me some measure of reassurance I need, in the midst of what can be a very confusing and disorienting world. I have skills I can pass along to others who want to learn, and by offering others what I myself seek to have, that can get me out of my funk and keep the focus off me-me-me.

In all honesty, I need to be thinking this scenario through, anyway. My neuropsych is at the end of their career, and they’re not going to be practicing forever. I’m fortunate/unfortunate enough to have worked with them when they are at the high point of their professional practice, having spent decades refining their approach and having already had tons of experience with what works — and what doesn’t.

I’ve had the good sense to avail myself of their help when I’ve needed it. The thing is, I’ve done so much of my work by myself — and then checked in with them after the fact — that it’s not their guidance I rely on; it’s their assessment and feedback about what I’ve done and whether or not the result is what I was hoping for.

It’s been one big, fantastic science experiment, in all the best senses of the word, and I’ve really benefited. And to be honest, so have they. They’ve never directly told me the details about how my work has helped them, but they once mentioned to my spouse that it’s hugely encouraging for them to work with me, as I’m so intent on getting better and really putting in the work. They said that most of their brain injury survivor patients aren’t willing to do the work to really get better. How depressing that must be…

The working relationship has been mutually beneficial for sure. I know they’ve gotten better, themself, because the difference between how they are now and how they were when I first met them, is significant. When I first met them, they were much more tentative, spacy, and absent-minded. They would forget appointments with me, they seemed more hesitant in so many ways, and they didn’t have their act together with billing and business management details.

In the past six years, they’ve really stepped up their game, and I like to think that working with me has helped. In, fact, I’m sure of it. And the time when I went to meeting with them every other week, instead of every week, they seemed to regret not checking in with me each week.

I guess one of the things that’s kept me motivated over the past years, has been knowing that my progress was helping another person. Knowing that getting better myself was helpful to my neuropsych — which then made it possible for them to help others — has been a driving force behind my recovery. It’s not just about me. It’s about all of us.

This blog, too, has been a big part of my recovery, and hearing from folks that I’ve helped them, or they respond to things I write, has been a real boost for me in so many ways. My TBI recovery doesn’t just belong to me. It really belongs to all of us. I happen to benefit from it — and so do many, many others.

So, that keeps me going.

And I wish I could do more. I really do. There are so many brain-injured people suffering and alone and afraid, because of what’s happening inside their heads — and bodies — that they don’t fully understand. That goes for strokes, acquired brain injuries, and traumatic brain injuries, alike. We’re all a little bit different from each other, yet we have so much in common. And we need to focus on that commonality. The professional community stands to gain from divvying up our issues into different categories and disciplines, so they can mobilize their resources to address each aspect. But for those of us suffering from the symptoms and after-effects and ripple-effects of brain injury, this segmentation just makes things worse.

Those of us who have experienced brain injuries need to be connected with the larger world. We need to be involved in a community. And the way brain injury recovery is set up in this nation, is the worst way to handle things for us. It’s limited by insurance and the abilities and knowledge of people who are not adequately trained in brain injury issues, and who frankly run out of steam, because brain injury does such an unpredictable number on its “recipients”. Also, our loved-ones get the brunt of things, because they’re ultimately our last line of assistance, but nobody out there truly understands

Lord, we are exhausting.

So, those of us who can, need to do something about it. I have posted the Give Back training I downloaded to my site here https://brokenbrilliant.wordpress.com/brain-injury-association-resources/give-back-tbi-education-for-survivors-and-families/ I hope people will make use of it. The information has helped me so much, and I do need to go back to it… and I shall. With a fresh look, years after the first time I downloaded it and started to read it.

I have some other ideas about how to help… including more ideas for this blog. I’m getting a bit long-winded here, so I need to wrap it up… and also get on with my day visiting my family. I don’t get to see them that often, so I need to take advantage, and get on with my morning.

I’ll be driving back home later today — and it’s another gorgeous day — so I need to get my act together, get off my damn’ pity-pot, and make the most of what I have. Each and every day.

Onward.

Traveling again

Headed down this kind of a road today…

I’m headed out on the road again – going to see family several states away. I’ll be driving, and the weather is phenomenal for this trip. Lucky, lucky, lucky.

I’m having a series of really good turns of events. In the past, I would have worried about “the other shoe dropping,” and been on the lookout for what could go wrong.

Nowadays, I am just so glad that things are not obviously falling to sh*t all around me. That happened to me for years, and since I don’t believe that things continue in one certain way forever — there are cycles to everything, just as there are seasons and days and nights and variations in the world around us, all the time — it stands to reason that I should have a long spate of really good things happening to me in the coming months and years. Maybe for the rest of my life, because the first 49 years of my life were an almost constant battle against one thing or another.

I just can’t believe that my life is going to be crap, for all eternity.

So I’m thanking my lucky stars (or who/whatever else managed to set me up to have all these great experiences) that things are turning around, and I’m heading off down the road. The weather is fantastic, it’s early enough in the day that everyone isn’t going to be out on the interstates where I’m driving, and I don’t HAVE to be anywhere until this evening. I have the whole day to do with as I please, and that’s pretty cool.

Off I go…

What a world…