My sleeping has normalized, at last. After 3 days of vacation, I finally got to bed by 10:30, and I slept till 7:00. That’s progress.
I’ve been getting good exercise, getting out in the mornings to walk the beach or roam around town, and I’ve been able to nap… and relax.
It’s really important for me to keep on a schedule. If I’m not, I can get tired. When I get tired, I get cranky. I’ve had to catch myself a number of times, yesterday, to keep from getting “snappy” with my spouse. I hate when I get short-tempered… especially when my spouse needs my help. I seem to get more short-tempered more quickly when they really need my help. That’s the worst time of all. I want to be patient and helpful, but my patience runs out when they are most in need.
That’s something I’m working on. It’s come up drastically in the past, and it weighs on me with the guilt. It was worse when I was first dealing with my TBI stuff and wasn’t getting any help, yet. My spouse had fallen and hurt their back, and I was so angry and confused and turned around, that I just walked up to them, yelled at them, and walked away in a rage. I couldn’t figure out how to handle the situation, and I left them lying by the road in pain.
I’m not proud of that. But I know now it was the TBI that made me do that. I would never do that myself by choice. And I think of that situation often, when they are truly in need of help with something, and I am feeling short with them. I don’t want to be like that ever again. The injury they sustained that day has worsened over time, and now they are nearly disabled by it at times.
I sometimes blame myself for that — especially because I didn’t help them in the following days and weeks and months… as their injury worsened and their back ache spread down their legs to their knees and the whole way to their ankles, but I couldn’t figure out what to do about it — and neither could they.
At least I got some help, when I did. If I had never gotten help, things would be even worse now, I’m sure. But it’s hard to face my own role in making this situation what it is. Fortunately, my spouse is getting physical therapy, but it’s been years since they could walk and move without pain.
Of course, they’re responsible, too, for much that happens in their life. They make unhealthy choices and resist common sense, so it’s not all on me. Still and all, I do feel a responsibility for this situation. And it’s incumbent upon me to manage myself properly, so I don’t pose a risk to them anymore.
I’ve had enough of that for one lifetime.
This vacation is about us being here together. Being a couple again. Being partners again. This is the first vacation we’ve had all to ourselves in a long time — for the past several years, they’ve always wanted friends to join us. But this year, no one can come, so it’s just us. And that’s fine with me. It’s easier for me to take – and it’s more of a vacation for me.
Drink water, eat regularly, get exercise, rest… and reset.
Last week was a full one. Full of news, both personal and international, and full of activity.
My friends in Paris are safe. That is some consolation, as the terrible stories emerge. But it does nothing for those who were killed or injured — and all of their loved ones who will forever be affected by that horrible series of events, last night.
And now the fever pitch of war cries picks up even more. When war doesn’t just happen everywhere else, and people start to notice how… horribleit is, there tends to be an outcry. Something must be done. Action must be taken. Things must change.
But then, after people have gotten used to it and made the experience part of their world view, the cries for action go away, and people go back to living their lives, grateful to be excited over things that don’t matter at all.
Of course, not everyone gets to leave the struggle behind. Some of us live with the struggle, day after day, and it never really goes away. People with chronic pain…. or neurological issues… or chronic degenerative conditions that will never, ever be cured, just get a little less painful, from day to day… or daily struggles with PTSD, mental illness, emotional trauma from things done to them, their family, or another loved-one.
Many of us carry these things around with us, day after day, sometimes coming to terms with the pain on a moment-by-moment basis.
Some days are better than others.
And today — for me — is a quiet day, which I hope will mean it’s a good day.
The attacks in Paris last night really set me off. I was up later than I usually am, but fortunately I was able to “sleep in” till after 7:20. So, all is not lost. And later today I plan to take a nap. Or two. It’s all about pacing myself… but also not letting myself get pulled down into the malaise that sometimes takes over me when I’m not active (“taking it easy”) on the weekends.
Sometimes, taking it easy is the last thing I need. It can be physically painful. A three hour nap can leave me feeling like I’ve been trampled by a herd of while boars. It also makes me feel dull and drugged. I may need the sleep, but it takes a toll. Yes, I want to rest my mind and body, and I need it. But the inactivity actually brings the pain.
So, while today will be a quiet day for me, it will also have its share of activity. Interspersed with naps, so I can get up and be active again. Short bursts of doing something, followed by a rest period.
I will also rest my mind. My head is swirling from the past week and the Paris attacks, and I need to get myself to what I’ve heard people call “desert mind” — where your mind is free and clear of clutter, and things are moving through as they will, without getting snagged on all kinds of things you make up. Or maybe that’s “zen mind”. Anyway, that’s where I want to be today. Flowing right along, playing my music, exercising a bit, driving around to run my errands, trying out some new music out of curiosity, taking care of odd things at home, and just following the day where it leads.
Sometimes, when I am trying to get to sleep, I imagine myself in a desert canyon, sitting in the shade of a rock face beside a flowing stream where wild animals come to drink. In my mind’s eye, I watch coyotes and mountain lions and rattlesnakes come to the water’s edge, while I observe in silence. They see me, but they know I mean them no harm, and they mean me no harm, either. I watch scorpions scuttle by, and I see vultures circling overhead. It’s not frightening. It’s relaxing for me — to be in the presence of creatures that many fear, and to not feel anything akin to fear — just letting them be there.
Just letting it all be. Letting it be quiet. Letting it be what it is. Seeing everything for the danger it can be, without reacting to it as danger.
That’s how I feel about the weekend ahead of me. Two days off my regular work, I have time to focus on the things that really speak to me in a way I want to be, mentally. I can create the state of mind I want to have, in the midst of it all, and that’s a mighty valuable skill. It comes in handy, in times like this.
I’ll also have time to revisit things I’ve left off over the work week, because I’ve been too busy/tired/overwhelmed to do them justice.
Things like my neuropsych retiring — and taking away the one opportunity I’ve had each week since 2009 to understand my life in a way that is useful to me, not just a blind repetition of others’ phantasmagorical imaginings. I’m starting to understand the true impact of this change. In a very real way, a part of me is going to die when they leave. I believe that our Selves are defined in large part by the circumstances we are in and the dynamics with the people we interact with. We are a certain way with people, and when those people depart from our lives, that way goes away. And it can never come back, because there will never be another person like them in our lives. Ever again.
So, it’s a death, of sorts, and our working relationship is essentially going into a sort of long-term care, and then hospice, as I say good-bye to that part of me that exists only within the confines of that office, once a week.
It’s time to dive a little deeper, now. It’s a little frightening, a little invigorating, a little freeing, because it’s finally happening. I had wondered about this for months, and now I know my hunch was right. That month they were away with their family, they were probably looking at condos, during much of their visit.
And it’s time to stop dwelling on the Paris attacks. It’s a horrible, horrible thing — and it’s not going away anytime soon. So, I can do myself a favor and step away from it to think about other things that build me up, rather than tear me down… and drain the energy I really need to just live my life.
So, my neuropsych is retiring in the spring. I’m probably in a state of denial,right now,with the inevitable progression from that state of mind to anger, bargaining, sadness, and acceptance.
At least,that’s how it’s supposed to go.
But I’m off to a strange start, not feeling much of anything other than genuine happiness for them — and being a little relieved. Similar to my PCP passing away, this impending loss will solve some issues for me — issues that I had been planning to resolve by just terminating my relationship with them.
Supposedly I’m supposed to have a reaction to this. And back in the day, I would have. But since my fall in 2004, I haven’t been able to muster the emotional connection with others, like I used to. I don’t know what happened to me. I have been thinking it was just a by-product of getting older, getting crankier, and ceasing to give a damn about the things that used to get me in such a whirl before.
Maybe it is… but other people my age seem to be able to forge strong personal bonds with others… especially others who help them on a regular basis. This working/therpeutic relationship I have with my neuropsych is the most stable, constant connection I’ve had — probably ever.
And it’s going away in 5 months.
I guess I’m feeling a bit sad, in some ways, but not as clearly as I used to feel before 2004.
I think part of it is, I’ve never really understood clearly how I was supposed to feel about them, in the first place. I go there each week to work, to make progress, to get my life back on track. It’s not for emotional support or whatever. But they seem to think that’s what things are about.
I dunno. It’s a bit confusing for me, even though I know it’s not supposed to be. Maybe I’ll sort it out.
Or maybe it will be like when my doctor passed away — a burst of regret and sadness and frustration that they had to suffer as they did, but not a ton of loss and regret for me. In a way, I had already moved on. And I sort of feel that way about my neuropsych, who I have felt myself drifting away from for a number of months, now. As though I expected something like this to happen.
To be honest, at this point, the most distressing thing about it, is that I’ll have to adjust my schedule and get acclimated to a new neuropsych. I need to keep working with someone, because if I can’t talk to someone who knows neuropsychology, the rest of my life becomes a tangled mess of not being able to put things in order. I’m surrounded by lazy-ass people who just want to be comfortable in life, and who think my issues are mental or emotional or just character-based. It drives me nuts. I need to interact with someone who is A) aware of how TBI affects your life, and B) is dedicated to improving both themself and helping others do the same.
Anyway, enough about this. Shrug. The day is waiting.
A week or so ago, I got a message from someone I have not seen in nearly 30 years. The last time I saw them, we were like siblings – so close, almost like lovers (except that we were each romantically involved with others in our small circle of friends). We were each others’ protectors and confidantes, through all the relationship drama that happens when you’re 22 years old.
I haven’t had that kind of a friendship with anyone, since – even my spouse.
That was back when I was drinking myself silly, most days. I was also still struggling with the after-effects of at least 5 mild TBIs, during my high school years. Plus, I was a falling-down drunk, so I may have hit my head during one of my forays, too.
Long story short, we parted ways under very bad circumstances. I was an ass. And I split without an explanation. Just picked up and left and never responded to the letters they sent.
I was so lost, so confused, so messed-up and furious with the world. And when I started to get clearer and cleaned up my act, I tried looking for them online. But I found nothing, other than a single picture of them at a holiday party with an organization they worked for.
Then nothing. I searched again, but the picture was taken down. I can find pretty much anyone or anything online, so the fact that they were nowhere to be found made me think they were dead. It was crushing. I had wrecked things so badly with us, because of so much I had not figured out… and I believed I’d lost my chance to apologize and make amends.
Fast forward a few years. Doing a search, I found them again – just a single mention of their name at an organization where they worked, in the town where they had lived when I’d known them. No picture, no telephone, but I knew it was them. I toyed with the idea of getting back in touch, but I couldn’t figure out how to do it as well as I wanted.
Fast forward a few more years, and another search shows them at a different organization in their town. Again, no telephone number or email. Again, I couldn’t figure out what to do.
So, I gave up. And I downloaded one of the songs we used to sing along to, back in the day. I listened to it, now and then, while driving around.
Then I stopped. That was over. It was done. Let it go.
Fast forward again… to last month. All of a sudden, a message from them shows up. They reached out to me. They found me. And they wanted to make contact.
It was something I thought would never, ever happen. But there it was.There they were.
I wrote a note back, and then wrote another. They responded. Then I wrote an extended apology and explanation for why I disappeared. I left out the TBI stuff. Why blame that? I was just an ass, is all. And young.
I haven’t heard back from them. It was a very honest, heartfelt note, and I can imagine they have some catching up to do with their own perspective. We’d had one one of those epic friendships, like soldiers do. Or castaways on a desert island, building a raft together, to head for the open sea and look for more help.
It’s been an emotional bunch of days. I’ve gone through over 25 years worth of upheaval, since last week, but now things are calming down, and it feels good. Like I’ve finally put that one missing piece of the puzzle in place. I don’t know if they’ll ever get back to me again, but the fact is, I finally finallygot the chance to say, “I’m sorry. I did wrong.”
I’m taking a break today from my usual routine. I had a mixed day, yesterday, which started out excellent after my good evening on Friday. Saturday morning, I went to the chiro, ran some errands, and then headed home for a nap. All good.
It got hot, though, and that puts my spouse on edge – big time. We both have a bunch of things we’ve got going on, and not nearly enough time to take care of it all. Or so it seems. After I woke up from my nap, we had a bit of fireworks, as we were both feeling pressured and inadequate and totally behind the 8-ball.
Basically, what went down was that my spouse had some things they needed to get done. They had not planned well with their time (even though they knew that they needed to take care of these things — and they’ve known they had a deadline for weeks, now, but they waited till the last minute to do anything), and they suddenly wanted me to go out and run all sorts of errands for them, to pick up the slack.
My spouse has a lot of anxiety issues, and it’s quite soothing for them, when they get to boss me around. It’s kind of funny, actually. I can tell when they’re feeling antsy and insecure, because they give me a long list of things to do, and they complain constantly. But when they come up with all these things I “have” to do and they send me out to do them, they feel so much better. They also like getting me out of the house so they have the place to themself.
Yesterday, they were really nervous, so they came up with this long list of items they wanted me to take care of. I, however, had my whole afternoon planned out, to take care of some work things I need to finish up. I didn’t have time to go on an extended shopping trip. Besides, I’d already bought a bunch of things, earlier that day when I was out and about. I said “No, I’m not going shopping.”
Well, when I refused, you’d think the earth had shifted off its axis and everything was sliding into the oily Gulf of Mexico. I got my head chewed off, big-time. But you know what? I wasn’t going to take it, yesterday. So, I chewed back. I didn’t just tuck my tail between my legs and slink away, when they got nasty and obnoxious and started in with “that tone” that sounded like they considered me a form of life lower than slime, and who was I to question their infinitely wise judgment?
Okay, so you wanna play that way? Let’s throw down, then.
And I did. I stood my ground and didn’t just quit and leave. I said my piece and didn’t let them just run roughshod all over me. Throughout our relationship, my spouse has often talked to me like I was an idiot — like countless people have over the course of my life, and my parents did before everyone else. Same old same old. And I’m sick of it.
So, I told them that I was sick of them treating me like I’m brain damaged and saying that because I behaved one way in the past, that’s how I’m always going to behave. I told them I’m tired of feeling like I don’t exist in this marriage, that I’m tired of just taking orders from them and being treated like crap if I don’t just hop-to and do their every bidding. All the while they were looking at me like they hated my guts and they were completely disgusted that I had anything to say at all.
But I said my piece. I felt like a miserable little piece of you-know-what while I was doing it, but I did it anyway. I didn’t let them dismiss me, and I didn’t let them run the entire conversation. The whole experience felt… well, wrong… but I knew in my heart that it was right for me to stand up for myself. It was just an unfamiliar situation, with me using new skills that aren’t second-nature to me (yet), and that unfamiliarity was what was making me feel terrible.
Of course, the fireworks weren’t the worst thing. The worst thing was the aftermath, when I proceeded to beat myself up for losing it. But in retrospect, some of the things that pushed me over the edge are “old stuff” from years gone by, when I would capitulate to every single demand, not ask any questions, just do as I was told. And it’s understandable that I would have a bad reaction to them.
Since I started out on my active mTBI recovery, the road has been a bit rocky. Understand, for years — decades, even — I was compliant and agreeable and went along with pretty much what anybody said. That was especially true of people who I thought cared about me. I trusted their judgment and their ideas more than my own — after all, if left to my own designs, I often got things completely screwed up. And I was game for just about anything that someone else suggested I should do — even things that I instinctively questioned.
I just gave in. Went along. Didn’t make a fuss when people called me names or talked to me like I was an idiot. My spouse has done that quite a bit over the course of our marriage. They would just flip out on me when I wasn’t following what they were saying, or if I messed things up, I was “pathetic” or “stupid”. I never spoke up in my own defense because I pretty much agreed with them. In fact, if anything, I had an even lower opinion of myself than they did.
But over the past few years, as I’ve learned about the true nature of my issues and how to deal with them, I’ve been less able to tolerate nasty behavior towards me. I’ve stopped just shutting down and blocking off unkind words as though they didn’t matter. Words do matter.
And over time, they take a toll. I never gave much thought to how people have treated me, until about three years ago. I just took it in stride as one of those things that makes life more challenging. I never wanted to let on that all the bad treatment was affecting me in any way, shape or form. But the truth is, it has — and not for the better. Indeed, the most hurtful thing for me yesterday wasn’t my spouse’s tone or the words or the general sense of being attacked. Yesterday, one of the things that made the fireworks so uncomfortable for me, was my thinking that I didn’t have a right to defend myself.
For anyone reading this who lives with or deals with a traumatic brain injury survivor, rest assured, although it might not look like we “get” the mean things you’re saying to/about us, we actually do. It might take a while to sink in, and we might not be able to defend ourselves in the moment, but there’s still no excuse for verbal abuse.
No matter who/what the target of your attack is, it’s still an attack. And it can be very hurtful.
The last part of yesterday was pretty rough for me. I felt terrible, really “hungover” from the emotional outburst, and I didn’t get anything done that I’d been planning to do. I felt terrible about missing the cues in my spouse’s tone and words that were setting me off. I felt awful about having stood my ground — crazy as it might seem. And I felt like I’d been the bad person. I also regretted some of the things I said, which were hurtful and just slipped out. Derailed. I hate that.
But when all was said and done, after I got another full night’s rest and spent some time meditating this morning, I got a lot more clear.
Basically, what I’ve realized is that the terrible feeling I get from these kinds of fireworks is more physiological than mental or emotional. I feel physically ill from the biochemical cascade of the stress hormones that flood my system when I’m on high alert like I was yesterday. I was really on high alert. Freaked out. Flipped out. Anxious. Angry. Assertive in unfamiliar ways. And yes, a little aggressive at times. My body bears the brunt of the experience, and the feeling I have after the fact is a biochemical one — it’s not actually a mental or emotional state. It’s a physical state. I realize this now.
It’s important that I realize this, because last night I didn’t. I let my body get the better of my brain, with me thinking that the bad feeling I had was an emotional one, or a mental one. I thought about that feeling in terms of coming from my broken brain – that I was having it because there was something wrong with me. But the fact of the matter is, I was having that bad feeling because my body was doing its job (protecting me from the “threat” to my schedule of yet more things to do and the attack from my spouse, when my time was already limited), but it was doing it a little too enthusiastically.
In fairness to my spouse, they’ve had some neurological issues, themself, and they were also not fully awake after their extended lie-in. They were on edge, under pressure, and feeling boxed in by life in general. It doesn’t excuse their behavior, but at the end of the day they realized their part in things and they promised they were going to look at that and do better in the future.
So, there’s progress. I do believe them. There’s a lot of love between us, and we’ve been together for almost 20 years. Neither of us is going anywhere. We just need to work through this and not give up. We’ve been through worse.
And I need to cut myself a break, when I stand up for myself. It’s unfamiliar to me, and unfamiliar things make me uncomfortable and start that fight-flight biochemical cascade. It’s not a defect of my personality or character. It’s my body doing its job — and sometimes overdoing it.
In the end, what is really needed is just open communication and openness to the situations of others. To understand where they are coming from, and take the time to step back and be gentle with one another. To not let my sympathetic nervous system take over when things get a little dicey. Life is full of pressures for both of us, these days. We have some pretty significant money issues, and I’m starting a new job shortly. We have logistical issues, as my spouse expands their business and takes on new clients. We just have a lot going on, and we have to (re)learn how to let each other BE. Especially when things are heating up.
The last thing either of us wants to do, is tear each other to shreds, just because we’re tired and have a bunch of things we need to get done. It’s important to be bigger than that.