And you still have the same types of interests and desires and needs that you had before your injury/-ies.
You want to be fully engaged. You want to be involved in your life. You want to have hopes and dreams and to follow those hopes and dreams.
Why should any of that change after TBI? Some days, it’s like the world just expects you to stop being interested in the things that mean the most to you — to anyone. Like it should be so easy to let go of the old ways that were so familiar and made you “you“. And you’re just expected to do it. To adjust. To deal with it and move on.
This is something I really struggle with on a regular basis. It’s bad enough that I have to deal with the confusion and disorientation and not feeling quite “here”, half the time. It’s bad enough that I have to think through every friggin’ thing that used to come so easily to me, lest I get hurt or screw something up. It’s bad enough that everything feels like such a CHORE, and even the fun things are hard for me to do, sometimes.
But through all this, I’m expected to do it without any recognition or support. That just sux.
Even my neuropsych isn’t much help to me in this respect, because comparatively speaking, I’m not nearly as “bad” as their other patients. I’m high-functioning. My IQ is still up there. I have a good job and a house and all the trappings of modern success. I’m in a stable marriage of 23 years. I have a bank account and a plan for how to live my life.
What could possibly be wrong?
Yeah, well, I’ll spare you the details. The bottom line is, half the time I feel like crap. I don’t feel like myself. I can’t recognize the person who’s walking around in my shoes, wearing my clothes, doing my job, driving my commuter car to and from work each day, running errands on the weekend. Who IS this person, and how did they get in my life?
Addressing this is so difficult for me. I rarely bring it up with my neuropsych, because they don’t really seem to think it’s that big of a deal, and they don’t seem to think it should impact me. After all, compared to their other patients, I’m doing grand.
Oh, except for flirting with danger on a regular basis, and being totally oblivious to what all could go wrong in an instant.
To be truthful, I have not discussed everything with my neuropsych that I could. Over the years, there have been a lot of things I haven’t brought up, because they are way too upsetting for me, and it’s more important to me that I have a regular conversation with a regular person and be able to relax, instead of plunging into that infinite, bottomless black abyss that takes me over when the emotions run too high. I have to stay functional. I have to hold my sh*t together. I can’t be sitting around spilling my guts, and then getting so freaked out and upset that I can’t even see or walk straight. My neuropsych has seen me overwrought a handful of times, and they don’t seem to understand what all is going on with me. They got exasperated, as though I were not trying.
So, I just don’t go there with them. I keep things positive and talk about the progress I’m making. I don’t have many words to explain the way it feels inside. Plus, when I get to their office, I’m ALL THERE, and nothing else outside the office exists. There are so many pieces of my life that feel like a shambles to me, even though on the surface they look good and they are holding, I don’t have much hope that a strong wind wouldn’t blow them all down. In all honesty, I’m not even sure how they’re holding together. They just are. I’m just lucky, in so many ways.
That, and people are so consumed with their own lives, they don’t notice the chinks in my armor.
It all just feels so precarious.
And it’s a strain. Because I want to have a life I can be proud of. I want a life I actually feel like I choose, and I’m involved in, not just one that other people tell me I should have, so I go ahead and go for it.
So much of my life has been about just getting by… because I was the only one who could see what kind of crap I had to deal with inside. And nobody seemed to take seriously the challenges I had to overcome on a regular basis.
Oh well. I’m still here, and I still have my hopes and dreams to follow. I’m still a human being with my fair share of challenges, and I can’t lose sight of that. It’s all a massive discovery process, and in the meantime I might just learn a useful thing or two.
So long as I don’t get myself killed, chasing danger and risk, to remind myself that I’m alive.