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.

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Back from my 2-day reboot

Ahhhh… that’s more like it.

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

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

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

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

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

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

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

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

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

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

And that blows.

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

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

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

Yes, that’s something.

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

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

That’s a relief.

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

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

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

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

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

It’s all good.