I’ve been thinking a lot about my recovery, lately. What I lost to TBI, what I’ve gotten back, and where I go from here.
Scratch that. Yes, I’ve been thinking a lot about it, but thinking is not the point.
Looking back at where I was, just a few years ago, it amazes me that I was as functional as I was. I mean, even just five years ago, I was grappling with all kinds of crap like intense mood swings that would completely wreck my day, and a ton of money troubles — creditors calling me constantly, threatening to take me to court — and some of them succeeding.
I landed in court at least twice (maybe three times?) that I can remember, and I totally screwed up one of the appearances, where I didn’t realize I needed to go into the actual courtroom. Even though I was sitting right outside, they logged me as a did-not-appear, which didn’t do much for my case.
Oh well. That’s over now. Don’t plan to go back there again.
Anyway, everything was so turned around, and it was literally all I could do, to keep up. I was in constant reaction-mode, constantly pushing, constantly fighting, constantly going against a grain of one kind or another. I was off my moorings, cut loose from the life I’d once known, and I was dealing with my spouse’s illness, as well.
All this, while having no real sense of who I was, or what I was about. I was on auto-pilot, just hacking my way through the weeds. And there didn’t seem to be a clear path.
Now things are different. Very, very different. And I’m coming out of the jungle with a clearer view of where to go. It’s like I can actually see a path in front of me. It’s not ideal, but it’s still a path.
And I’m still walking. Running, now and then. I’m also making progress, each and every day. I just need to make sure I get enough rest and good food, to keep going. That means real food, not a handful of candy and junk food at 3:00 in the afternoon. That sh*t will do me in.
Anyway, life goes on. I’m putting some distance between my past and present, and that’s giving me some needed perspective. I was so caught up in just getting through, so turned around, so uncertain about how to live my life.
All the things that had seemed so familiar to me — the old ways of thinking and doing and being seemed to be smashed to smithereens. From the simplest of activities like brushing my teeth and coming my hair in the morning, to making breakfast, to what I did for work each day… all of it morphed into something different and unrecognizable.
And it was really hell.
I think the hardest thing was losing my innate skill with little simple things, like being able to hold things without having to think about it. Dropping stuff all the time did a number on my self-confidence, and I couldn’t figure out how to get it all back. I just felt so stupid, so dumb, so inept. The simplest things were challenges for me, and I didn’t understand why they were hard for me.
That just stressed me out, and stress biochemistry does a number on your ability to learn.
More stress meant it took longer for me to re-learn, to re-train my body and brain, and it just prolonged everything. I didn’t understand the nature of my problems. All I could see was that I had those problems — or rather, they had me — and there didn’t seem to be any escaping it.
Now I know better, of course, but it’s been a long, hard road. And frankly, it’s sucked.
It was lonely. It still is lonely. Because nobody seems to understand what it’s like to actually lose your Sense-Of-Self. What it does to you. What it does to the people around you. How much it takes out of you, day in and day out, to have to reconstruct your life. I’ve rebuilt a huge amount of aspects of my life as I once knew it, but to be honest, I still know that I’m not the same person I used to be. And while I’m “close enough”, still…
I don’t feel the same way as I used to — about my life, about living my life, about, well, most things. And that loss of Self, that loss of the Sense of My Self, has been the hardest thing to overcome. I know how to rebuild. I know what it takes. But it’s still not easy, and most days, I’d rather not have to.
There’s a reason people don’t readily jump into finding out what it’s like to recover from a TBI. Or Concussion. Or stroke. Or brain aneurism. Or encephalitis. It scares the bejesus out of them to think that the brain can change as dramatically as that, and they just don’t want to think about it.
Some of us have to do this work. But it’s not for the faint of heart.
18 thoughts on “Not for the faint of heart”
OH Yes, YOU GOT IT!!
…society doesn’t teach us – until it’s too late.
the grief is without end. it is so lonely bb. again your blog always makes me feel understood. the feeling with tbi and the worsening of an already autistic-like mind, is so misunderstood, that i wonder why would i even bother to tell a soul. all it does is make me feel more lonely and more misunderstood and more frustrated. all of which, takes a huge toll on my mental/physical well-being and reminds me of this complete mistrust of well-meaning or not so well-meaning professionals and people called family. i’m very grateful for the tears that fall. in this way, i know i’m alive.
i feel like goldilocks who goes a long distance, only to find out there was nothin that could be done with her. And any talk of it was a sham. i want toto to take the curtain away. I took a five day vacation recent. and i was with well-meaning people who really care. but they would ask why i only lasted a half hour and had to go to a more predictable environment without music loud. how i could be so present for their kids building a sand castle or walking with everyone on a beach, but unable to go to restraunts or be social. every “no” that i gave was challenged as if i did not want to do all the normal things they were doing. and when i gave the true explanation,then i’m told that i give too much explanations. well if a simple ” I’m going to sit on the rock and stare at the ocean now is not good enough; how is telling them the following “too much information” that all the stimuli is very difficult for me and that people who come from two day comas and multiple concussion over many years, need more time in structured, calm environments. and i know more about the culture we were in. maybe they think i should tell hem i have migraines, but somewhere i want to talk on behalf of others so misunderstood. besides the culture i was in -listens more and can sit with not knowing answers a little better than we can, on a whole. I didn’t put the waiter off; I put m friends off. and i’m tired of all the cover-ups. a simple ‘what is your name?” can throw me off sometimes. they try to help but directing the waiter to turn music off when other tables like it and in a way that to my ears sounds bossy, makes me uncomfortable to the point where i tell waiter a condensed version that i have autistic problems and sorry to bother him. but this is met with why would you explain that and “you say dumb things to people” and well i just want to take a one way swim to nowhere. but i i could not take the music so loud, the lights going on and off due to generator problems and the nightmares that ruined most every night’s sleep. i also could not feel safe enough anymore to do things that i used to be able to push through. i’m legally blind without glasses. i got to the point that i do better without glasses in social situations even if i bump into things. I’m too old now, to put so much effort into the act.
How familiar this all sounds. Sorry to hear about your 5 days of … challenge? difficulty? endurance? I must admit, I avoid those situations like the plague. Over the years, I have “trained” people to not expect more of me. I just can’t be bothered with people in real life, for the most part. I’m way too sensitive. Dealing with them at work is tolerable, because it’s a structured environment and I get to leave them all behind at the end of the day. But vacationing with them where I cannot escape…? I’m just not up to it.
bb, how is it that you are “way to sensitive”? do you mean sensitive to noises, lights, and movements or are you talking of the heart?
Reblogged this on Recoveryofthemind.com and commented:
This is a good example of what loosing yourself and reinventing yourself is after TBI. Good Read.
Thanks for the reblog!
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It’s both – but mostly noises, lights, and movements. Interacting with people with my intense sensitivities can get overwhelming for me.
BB, Thanks for clarifying! People tell me I’m “too sensitive”. I try to understand what they are talking about. I’m sensitive because as the guy in movie “scent of a woman” says, “I’m in the dark here”. Meaning that I can’t get what everybody means to be saying most of the time. It is like they have their own little language. This frustrates me because I realize that it has always been a struggle but now it is much worse. Having a tbi is always being in a no win situation. Maybe I need to work on acceptance. Communication, at least in social arena, is a no-winner for me. I don’t think it is because I’m “too sensitive” but because I’m too dumb in many ways. Reading your blog helps encourage me and let’s me know that I’m not alone and just because I have deficits in social area, does not mean that I am a useless piece of cr–. As so many would rather me believe. AJ.
I think “regular” people do have their own little language. They don’t say what they mean, and then they get upset with us when we’re too literal and take them at their word. I had to tell my boss the other week to BE REALLY LITERAL WITH ME because they were trying to joke around, and I just felt stupid. There’s no shame in expecting people to be straightforward. They don’t often get much practice, so we have to ask.
finally going to see he neurologist. i’m so convinced that this is the type of professional, i needed to see all along. but somehow i left the doctors in an angy mod or at least frustrated. how did they all miss the tbi’s? my pcp at least sees i need a neorologist, and he is very good but he does not understand either that i do not get sarcasm. how is it that people find me so humorous but i fail to pick up humor. when i do pick up humor, i’m usually the only one laughing and i laugh so loud it is even obnoxious to me..my wife tries so hard to understand but she does not, due to no fault of her own understand, but MD’s, i have trouble forgiving. all i can say is that they are human. but what about the hyppocrit oath they take. they helped ruin an already ruined life. i’m sick now in other ways. i see very little good in mankind. but i realize that i know nothing. knowing nothing is ok. the world seems as complex as my brain injuriues. . making fun of an autistic-like symptomed man is not “if you can’t help them at least do not do harm”. i’m many things or have been many things but a liar has not been one of them too much. and a man in need of attention is not me. a drug-seeker is so far off. what kind of drugs are so many professionals taking. mistakes get made but why can’t anyone own them. well itry to follow a song lyric, “when you must speak of two (persons) better to begin with onesself ” I’ve made big mistakes. i’m sure that i’ve misjudged another or have been cruel.in someway somewhere. i’m not sure where or when exactly but i’m crap like the many docs. yes i’m wrong many time. i wish a doctor had to attend real life school more often. then again maybe i’ve been sheltered too. maybe tbi brings a few blessings. without tbi i would never have known homelessness or have had to wait 8 hours in a line to get emergency relief. i am lucky. tbi as a blessing- not sure. still wish i could go back to november of 1991. . still all i can do is feel blessed that i can string thoughts together and very well during several hours a day. but mental fatigue is real. i get so tired. and yes i am lucky and blessed and that i have a great wife…
“everything happens for a reason”. Maybe those of us who have been had a brain seriously injured and have survived to varying degress are here for a reason. But please no one try to convince me that december 1991 happened for a reason. Do not tell me my well-meaning sincere god-fearing brother that the brain is not the mind. Do not tell me it is all a battle in the mind for each one of us as if that precludes the possibilitity that a mind cannot be injured. Kindness is not weakness. But I do see where being kind does not work well for people in 2015. Maybe it is not that one is kind but that one is naive. And being naive in certain ways can be result of a brain injury. No, do not tell me about the silver lining to a mind that does not recognize itself. Yes, tell me I can find a life worthwhile and accept that I will never be the person I was before 1991.Ther two car accidents with ambulances and head injuries were not a gift. Surviving them is a gift and not having to have someone feed me etc. Yes there are many reasons to be grateful. . But being knocked cold and dragged to live out my final hours in a dirt field was not. Ot the university of penn guy saying it was ONLY a concussion.a blessing. Maybe bumping into this blog was. No, do not tell me everything happens for reason. For everything there is a season. That I can here. And that we do not know the mind of God and that some people lose seasons for reasons unknown- that I can embrace. But peope telling me to wake-up whilke in a trance or calling me a schizo, no this is ignorant and wrong. Besides, I’d rather be a schizo than one who goes around picking on people who are alone and brain injured. And if your my friend wait a a few minutes before you point out all the great things i have to be grateful for. But yes, you are still right. I have much to be grateful for. But losing 25 years and having to fake a “feeling” memory, and living still in a blur today is not one of them. ok ten minutes is up. i’m grateful. And will figure out more why as i did after the initial brain injury.
Good. Glad to hear you are going. Good luck.
I can relate to faking feeling memories. And living in a blur. It’s hard to explain to people who don’t understand. I tried the other day, and it was so stressful, I developed a splitting headache and have felt like crap every since. So much for my good intentions.
I feel as if I’m where you were a few years ago, even if I am 4 and a half years pas my first major concussion. It feels like when I get bumped in the head everything gets worse for a week or more.
Yes, the same thing happens to me. I think with me, it’s a lot of anxiety, but also things do seem a bit “off”. My acupuncturist tells me it’s my polarity / chi. Whatever they do to fix it, makes it feel better, so who knows?
Well I would have never made the connection but I feel like I tend to want to go to the chiropractor more after these incidents, so I’ll have to try that out.
Just make sure they don’t do a lot of structural adjustments — cracking your neck, especially. This can cause stroke in people with a history of head and neck injuries — and others as well.