I woke up today in a state of total, unremitting despair. All the world, it seemed, was caving in on me, and there was no place for me to turn. Looking around my life from the central point of my bed, all I could see was difficulty and challenge, no help to be had anywhere, and I was convinced that I am utterly alone in the world.
How could I help but weep uncontrollably, which is what I did. I was alone in the bed — my spouse and I have been sleeping in separate bedrooms for over a year, now — and even if I had been in bed with my beloved, it would have just made things worse. I would have set them off. And then we’d be off to the races.
I haven’t talked much (at all?) about the health issues my spouse has, but they are fairly serious. Life-threatening, actually. Life-changing. They’ve pretty much been disabled and unable to work since 1996. I don’t talk much about it, because it’s a never-ending saga of two steps up, one step back, one step up, two steps back. It’s exhausting even to think about it, so I don’t write about it or talk to others about it. It’s actually much easier for me to be a caregiver mostly by myself, without needing (with my confounded communication and organization issues) to explain in detail to everyone around me what I need, what they need, what will help, what will make things better.
One of the big drivers behind me trying to figure out this TBI business, is that my injury in 2004 severely curtailed my ability to be a decent caregiver and provider. If I hadn’t realized just how much my injury was mucking up my composure and my ability to earn a living — if those hadn’t been a problem at all — I might not be on this journey, right now. I probably could have let it all slide, for a time anyway. That’s what I’ve been doing for years, after all. It’s landed me in all sorts of trouble, but somehow, when the trouble only seems to affect you — and you can still make a living and slide by in the rest of life — it’s much easier to gloss over it.
When you’ve got an ill partner to care for, that changes a lot. Throw in a whopping mortgage and a bunch of other financial and logistical responsibilities, and you’ve got a hell of a compelling case for figuring this sh*t out.
Anyway, enough about me. The thing with my spouse’s health issues is that flare-ups with physical issues tend to trigger extended cascades of panic-anxiety, which are even more debilitating than the underlying physical problems, themselves. And when they are down or in a prolonged panic state, they neglect their physical upkeep, which exacerbates their physical condition.
Their “regressions” can be months-long drawn-out dramas of them needing almost constant positive reinforcement and support, as well as consistent reminders and motivational pep-talks about why it’s good to stay away from multiple packages of high-carb junk foods, and high-fat, high-sugar “treats”. It takes a mammoth effort of will and radical compassion to steer them back on track. They know they should do it, but there are a large number of complications that come into play. It’s just not a simple cut-and-dried case of steady-on. They’ve got a whole raft of issues from many, many years of awful, violent, immediate-family situations and bad relationships, so we’ve got that to contend with. Ghosts live in our home, and my spouse at times seems to have more of a relationship with them, than with me.
Now, once my partner is back on track, it’s good, and they can carry on in the world with relative normalcy. But I never know if they’re going to stick with their routine or if they’re going to feel like “taking it easy” and go off on another bad-food, bad-habit binge… and stay there for the next six weeks. Eating wrong and stopping the exercise and getting away from regular sleep-waking cycles might not seem like that big of a deal, but believe me — mind and body are totally connected, and if they neglect one, the other starts to go. Pronto. So, I tend to be on-guard a lot. Like a little Shetland sheepdog trotting around their perimeter and nipping at their heels to keep them away from the cliff, as best I can.
As best I can… which is not always that great. Over the years, we’ve had some better and worse times, the better times being when both of us were working and fully engaged in life. We have not had the easiest time of things over the past 20 years. We’ve been in extremely dire financial straits several times, nearly got evicted a few times, were on the run from angry landlords and creditors a few times, and along the way we’ve had our share of trashed relationships with people who purported to be our friends but then turned around and screwed us royally. We’re both trusting sorts with big open hearts. That’s the risk you run, when you’re open to people and you see the best they have to offer — you sometimes see a side of them that’s not their “default”, so you end up expecting one sort of behavior, but are the recipient of another.
But that’s another post for another day.
Anyway, lately, my spouse has been a little worse for wear — as have I — over money and work circumstances. They’ve got a couple of jobs coming up that will bring in money, which is great… but they need help doing it. In the past, I’ve helped — I was their main support. But I also over-extended myself, and one of the reasons I’ve gotten brain-injured several times over the past 15 years, is that I over-extended and exhausted myself and I didn’t take good care of my own safety.
Now, all that comes up again — if I don’t help my spouse do these jobs, the money may not come through. Or they may have some sort of breakdown without me around to stabilize them. But if I do help them, I may be compromising my health and possibly my safety. They’ve done events when I wasn’t there, and when the going got rough, they fell apart – which is not a good way to attract new business. So, the pressure is on for me to pitch in and help. Meanwhile, I’ve got this new job and I haven’t accrued enough time to take vacation to help with these gigs, and I worry that the exhaustion is going to impact my performance at work. I’m feeling like if I don’t rob Peter and pay Paul, we’re totally screwed. Both of us. Either way doesn’t look like a good thing.
The most frustrating thing is how none of this can be separated out into my-stuff-their-stuff. When you’re living with someone who has some serious physical and mental health issues, and you’ve got your own TBI complications to deal with, the problems one of you has never just stays your own — you both have the problems.
And that’s a problem.
Which is where I ended up this morning, weeping bitterly and desperately in the isolation of my room. Alone. Completely alone. Screwed. Totally screwed. All the world was closing in on me, and I could see no way out.
How much easier it would be, I thought, if I weren’t around. If I died, my spouse would get my life insurance, could pay off the mortgage, have the place to themself, and wouldn’t be bothered by my outbursts and “rough patches”. The thought has occurred to me a number of times over the years that they’d be better off without me, and it came up again this morning.
But after I’d completely abandoned myself to the despair for a while, eventually I got to thinking…
And it occurred to me that I/we have been in much tighter spots, with far less resources, far less knowledge, and with far fewer tools to deal with everything, than we have today. Things may look desperate, I may feel desperate, but is that really the whole story?
Let me think…
I think not.
Looking back, I can see — plain as day — how things just manage to work themselves out over time. Things change. It’s the nature of the world, the nature of life. And even though the shit may hit the fan, shit always turns into something else.
Or dried chips you can use to build a fire.
What’s more, when I look objectively at my life and compare it with the lives of others in dire straits, I know for a fact that I am not alone. I may not be personally acquainted with everyone who is having a rough time (though many of my friends are), but I know that I am not the only one in this world who suffers. And I know that I am not the only one in search of answers.
No, contrary to all appearances, I am not alone.
And I realized, as I got outside the confines of my poor-me head and really thought about my situation, that the main reason I was in so much pain, was that I was dwelling on the pain. I was dwelling only on the pain. Nothing else.
Which was not the whole story.
The whole story was also about the sun coming up outside my bedroom window, and there was a beautiful pink tint to the clouds.
The whole story was also about me having the presence of mind to plan a nap later today, so I don’t get too depleted.
The whole story was also about me being tight and cramped because I wasn’t taking care of myself — and me knowing what to do about that: get up and exercise.
The whole story also includes the simple, simple fact that doing something as basic as breathing can bring me back into my body, get me out of my head, and infuse me with energy and life that gets me out of the bed with ideas about what is possible — not what’s “impossible.”
The whole story is also about how these friends of ours who are having tough times too, are available to help with some of the things that need to get done, and I am not, in fact the only one who can help. And my spouse, when they’re in a steady place and are actually in the midst of their work (instead of fretting up in their head all the time), is indeed able to tend to their own needs and get help with what they need help with.
They have that skill. They are very in touch with their needs and wants and wishes, and they aren’t shy about speaking up about it. So, I can trust that. I have to trust that.
The other part of the story (I now realize) is that I’m just tired. I’ve had a very busy week, and Saturday was a continuation of that. I’m still in the process of adjusting to my new job and the company, and if I dwell too much on the unknowns, it does a number on my head. So, I need to not do that. Just focus on the work in front of me, immerse myself in that, and get on with living my life.
Do what’s in front of me. Dwell on that. Take things a bit at a time, and just be smart about how I budget my energy. Don’t run around like a chicken with my head cut off, because it’s summer and it’s not going to be a beautiful day forever. Pace myself. Use my noggin and all the experience I have. Chill.
And ask for help when I can.
Things really do have a way of turning around… so long as I stay open to them, and I spend as much time — if not more — dwelling on the possibilities, instead of the dread.
None of us knows the whole story about what is and is not possible. None of us knows how much we’re capable of doing, contrary to all indicators. None of us has it all figured out, and we probably never will.
Lucky for us.