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.
15 thoughts on “When bad things happen to good people”
Your feelings are so normal. Be easy on yourself. Uncertainty is very scary when you feel vulnerable.
I admire your attitude. The pity pot thing is no good. It’s best to stay alone and not to talk about it than do the pity pot. Brain injury is incomprehensible to just about everybody and it is really about an injured soul. I don’t think you’ve been on a pity pot. I just think it probably comes out all at once and after years of quietly coping with it. Give yourself a break. I look back and realize my biggest mistake was probably not taking SSI in 1990 after my first big problem. Fighting hard and silently was a mistake that set me up 4 much worse ridicule. Why knock your head against the wall talking to people about this problem. By all means get out and volunteer and help people and if you have lost trust in the people and they still mock you, then just quietly drift away and forgive in your heart. You are absolutely right though. Putting your energies in fellow man is the right thing. But there is a time that you some people might say that doing that gets you punished more in a strange way and you’ve been punished enough. Good Luck Onward. Jhon
Thanks for your words. Yes, all of a sudden I do feel vulnerable — just at a point in my time when I’m feeling really strong and solid, this new element is added into the mix. It may turn out to be nothing. I just have to not make it into something it’s really not. Thanks again.
Thanks for your kind words. I am feeling much more solid, now that I am home again and on my own “turf”. It’s all a process and yes, as you say, I do need to give myself a break. Thanks again.
you know that I have followed your blog for years now. women have intuitively known something went amiss in 91′ for me, but it means more to hear a man write about it at this point in my life. the scriptures are very important to me, but unfortunately the people around places of worship sometimes fail to see that my problem is not just emotional or spiritual; it actually is a physical problem. but anywhere one goes with tbi or autistic like symptoms, there will be mockery and disbelief- even doctor’s offices. how can one grow past the trauma issues when one does not feel believed. fortunately, for me a few people believe me and help me thru my mess of a brain. someday, I will be able to enjoy 1/4 of the beautiful world of nature. fortunately for me, some days it is a choice still and I get a few hours each day when I can concentrate enough to string ideas together enough to grieve the brain injury. this frees me to do the things I’ve been called to do. chiney j.
Thanks for your kind words. It IS tough, making it through without someone to believe you — or believe in you. My neuropsych recently had some issues that kept them from keeping an appointment with me, and I got panicked, thinking that something might happen to them… and then I’d be alone again, without anyone to fully appreciate what I’m up against, each day. We work so hard, sometimes, just to keep it together and overcome. And the people who think it’s all emotional or spiritual or mental, just haven’t got a clue. Hang in there, buddy. You will make it through. I am confident of that.
You know I did not have a clue either. But you know brain is resilient and some days I am very surprised that I can think as well as I do, but other times, forget it. Please no sarcasm in midflight, I will miss it. Professionals not want me to self-diagnosed. but I remember, my body remembers. I’m not a hysterical kind of person. I keep silent usually about aches and pains and I can’t stand whiners. Gratitude is very important and so is positive thinking but so is experiencing your loss and confusion as it is experienced uniquely by you. Recognizing limits and acceptance is ok and leaving room for hope that mind might improve. In fact, it is that process that gives us the chance to be authentically positive in attitude. I had a friend who lost two sons. I saw how she handled it. She sat in front of their pictures each day for 20 minutes or so for 30-40 years, and just let her self feel the loss and then she went about her day. I admire her. Lately another friend who works with dementia sufferers gave me a great present- pictures of the person I was before 1990-1, but I do not care to look at that anymore. For a few days I checked it out. I grieved that and then realized well I’m not that person and that was lost years ago. Now, I just grieve for my last brain injury which was about ten years ago that really hurt the chances of me having kids and a family. It took so much to get back what I did. I try to picture the kids building sand castles and laughing when tide comes in and knocks it down and they run ten feet above and start building again. But its natural to want to think of a sand castle you had put so much energy to build get mangled up. I somehow almost got there. I mean i almost could pull off the relationship things without requiring too much patience humanly possible. I finally started to see and recognize the importance of others more naturally. Now I must remember to remember how important certain people are to me. Grief again is high. waking up remembering and thinking i was a certain age and wet pillow as I realize that is long ago. Those dreams beat the nightmares of reliving terrible pain associated with brain injury. The second sand castle was feeling comfortable and even natural. Now I grieve Spanish music the language that I invented a new me in 1991. i had to get away from English and my past but did not know why. Now I know why. It is very painful to face your changed inner self view which is a personality. Yes, it is this loss of self that is unexplainable. Even now I can still string thoughts together very well for a time almost everyday, but it’s that loss of self and fatigue that we just must accept for now. It did seem that I eventually picked up points in some areas of thinking. Please I was not faking dumb I was dumb at that moment. But I’m not dumb OK. It’s the subjective loss of self that lingers even when you can get over the subtle cognitive deficits and personality changes. Borderline personality or bpd or whatever other crap they want to say that matches up well with what they know and feel comfy with. PTSD and MTBI repeated is not a personality thing to overcome but one to accept and build anew. Strangely I am now somewhat interested in the world cup soccer- a sport I was so passionate about prior to 91 December. But in 92′ when cup was held where I was living I did not even watch it and attended zero games, I forgot to get excited about it. . In some ways I’ve come almost 3/4 circle. Now I know what I used to be like before 91′ but its not in reach. My friend means well but its best that I invent a third chapter to my life. And be patient with self. No, “Life of Riley” is not staring at ceiling most of the day and having to think about what your voice is each time you speak or having to concentrate on reading body language or not wanting to close your eyes for the replays begin anew or needing to know your surroundings constantly. .One does not lose work ethic overnite in 91 and I would hasve collected ssdi if I knew you’d treat me like this later. The brain is very fatigued for all but a few hours a day usually around sunset. Less sleep is better in the short run. Sleeping is work as the mind works hard to reboot, not much refreshing there. I like it best when someone says “I can’t understand it, but it pains you so it is important to me too” I really want to go with a third language but my mind is tired and hurt in another way that is not compensating in ways as it did in 91′. So a new sand castle in English a language that brings the most pain unfortunately. But it is who I am. Whatever that is? Hopefully, I can find enough sand.
Very eloquently expressed. I could relate to so much you said. Thank you. Be well.
BB, How does somebody save themselves when they can’t understand anything in an ongoing way. I feel like this one side of my brain has so much together- like writing this entry for example. Today, it helped to go back and read some of my entries. Two things occur to me while reading them, the healthy side of my brain, it has been able to do very well in fragments. I hesitate to use this word “fragment” because people associate that with “borderline” or Sybil’s DID or demon-like. But I like reading my comments, not so much to see how able I was to write, which does make me feel good, but rather how unable I was to make all these very real feelings or thoughts a part of the workable ongoing self. It’s more than a memory thing for I can remember when focused, probably much of the content of my comment. I think this why many know this to be a “soul” injury of sorts. If the brain were a body, the injured body could be eventually fine, for it could jump over the puddle, cover its ears at the sirens, pick its nose, and blink and it’d have little care about how or the meaning of these things. In the very sad and difficult body injuries, a person might need a prosthetic to do some of these things or even accept that they can’t. What a painful challenge for the body injured person, yet their souls could remain intact and the experience have meaning. They might dump themselves naturally into finding a cure, preventing car accidents, or the hurt soul could want to sue a pharmaceutical company, give the finger to anyone texting and driving or getting revenge on whatever whoever caused their pain. The brain injured is hardly aware of the injury except weeks, months or years down the line that something is dreadfully wrong The brain even though recovering, even improving some functions, will fail naturally in integrating that part less definable. This has been my experience. The part that motivates us to nurture our spirit as part of a continuous and recognizably rewarding process is not there nor does it feel like it should be always. Why? It’s a soul injury. The sparkle leaves the brain injured eye for awhile at least. Actions feel contrived as do feelings other than distant grief. Is there value, in my writing this? Yes. It helps me survive and even thrive because it opens up a path to infinite compassion even though I experience things in such a fragmented way. I’m glad that I read this comment. First I noticed my comment was written in 2014- July. If someone showed me that comment and I indeed recognized it as mine, I’d have been shocked to see that it was from this year. You will believe me. You’ve been there, but I would have guessed this comment was written in 2012 or earlier. Luka
Luka, you really hit it on the head – but in many ways that I can only say yes-yes-yes to. Although I am about as functional as I have ever been — maybe even more than ever — and I show no outward signs of struggle to the people I work with, still within me there is this terribly fragmented self that does not — NOT, I tell you — really understand or have a connection with the world around me. I am living out a role, walking through motions that others recognize, for the sake of getting by, making a living, creating a space for myself to live without assault and offense from others.
I lead a respectable life, with apparent good health, and I am a productive tax-paying citizen. Never mind the chronic pain, the confusion, the disorientation, the sense of never really knowing where I am or what I’m doing. Never mind that I do not feel like myself, and if anything, I feel like whoever I was before is gone forever, and they will never come back. Disintegrated. Cut loose from its moorings in a rough storm, and smashed to bits by the surrounding boats in the marina.
It is the strangest thing, to walk around in life like a hollow shell, sometimes having no idea where I am or what I’m doing or what I should be doing next… just going through the motions, all the while passing for 100% with-it, 100% collected, 100%… everything.
I cannot account for it. I am profoundly uncomfortable in my skin – I don’t even know if this skin is “mine”. I don’t recognize my feelings and reactions to things around me – they are just actions I take on because I must, in order to be left alone. All I really want, is to be left alone, left in peace, and my simulation of normalcy is really for the purpose of throwing others off my scent, so they do not continue to seek me out and ask me, “What’s wrong?” It’s not safe to be “wrong” in this world, so my energy goes into seeming “right”, so I can be left to my own devices.
I am also surprised to see the things I’ve written, years on down the line. I often have no recollection of writing them, or I completely forgot about them, till I remembered them while re-reading them. I surprise myself, at how sane I sound, because inside my head is a cacaphony of confusion — patterns lost and never found, all meaning stripped away from what I am about, each and every day. Rather than being meaningless, my life has taken on myriad meanings — each of them is a tiny jewel I prize in that moment when I am aware of it. Then I shift my attention, and it is gone. As though it never existed.
I am living out a contrived life. An invented life. Perhaps I know from personal experience, what all the gurus say — that there is no “self”, and enlightenment is about discovering that.
But if this is enlightenment, it sucks. And I’d just as soon go back to the dark.
It is a strange, strange thing, to live this way. And I wish I could remember how things were before.
But I can’t. That’s gone. It might as well have never even existed.
But I’m still here. So, I keep on.
Keep on. Your blog must help many people.
Thank you. I will.
A neighbor who sure knows much about PTSD said in passing that I need more self-confidence. I’m thinking the confidence comes and goes but it’s the self that left me in 89′, 91′ and 2000something, that is not recoverable. With that said I keep on and continue being a responsible citizen but I have little energy to try to be like the others or the person I once was because I lost him 25 years ago and he ain’t coming back. What really rots is the stigma. For one, I could be capable in the correct environment to contribute much to society and secondly, it’s sad reflection of we humans. Who was it who said that a society is judged by how it treats the least of its people. Well, as you said I don’t want to be “that” person- so go on how we can.
I’m thinking there *must* be some place in the world where you can find a way to direct your attention and energy. There must be a role you can play, somewhere, somehow. For myself, I look for structured situations where I know the rules I need to work by, and then I do my part. I don’t have energy to do it for more than about 8 hours a day — and by Wednesday, I’m starting to wear thin. But I can at least pull it together for a while.
If I were not working full-time, I would look for volunteer opportunities. There are plenty of organizations that need help with tasks from simple to complex. I would probably find something really simple and basic to do — something that leaves me with the knowledge that I’ve accomplished something in my day. Sorting items at Goodwill or stuffing envelopes. There are plenty of folks who need help and will gladly have someone stop by for a few hours to pitch in.
If I were not able to work and were feeling cut off from the rest of the world, I would volunteer. It’s structured, it’s needed, and you don’t have to strike up permanent relationships with people. Just show up, do your work, be pleasant, and go home.
It’s important to do things like that — to feel needed and valued, even if for the most simple of things.
Keep looking for opportunities to experience people in a different light. More for you, than for them.
Reblogged this on jhon0914's Blog and commented:
BrokenbrainBrilliantmind”s blog helped me much through the past five years. If not just to tread water, I don’t feel that I have made much progress. But without at least one person reflecting the real you or your experience of life, I doubt that I’d make it afloat in these deep waters all alone. The sail boats passing by, I wave to and they wave back sometimes but a few blogs on wordpress have been my companions that tell me. “it’s ok”.