When getting no help is the best help of all

Well, that was no help at ALL — or was it?

I had a really good session with my neuropsych last night. But not for the reasons you might think. I came away with a renewed sense of really being capable of dealing with things on my own. In terms of having someone to bounce ideas off of, as well as sorting through the professional social landscape, they have been incredibly helpful to me.

I’ve been having a lot of physical/logistical challenges, lately. Vision, balance, headaches… feeling not-quite-here. It’s been pretty distracting, and it’s been adding to the overall burden of my daily life. The job changes and my spouse’s mental/cognitive status have been putting a lot of pressure on me. And I’d like to clear out whatever physiological and logistical issues I can, so that I can free up more energy to deal with the bigger emergent issues in my life.

The issues are good, as well as bad. I have a new job coming up, and I want to be in top shape to step up.This is really important to me — a new chance to really jump-start my life to where it should be, by now. My TBI in 2004 not only took the wind out of my proverbial sails, but also blew directly against me… alternating with stopping completely, so I was stuck in the doldrums.

So, now I have a chance to get back. I’m feeling a little pressure — but even more than that, a huge sense of promise, that I want to live up to, to my fullest.

So, I had gone to my neuropsych appointment with the hope of discussing these issues with them and coming up with some solutions.

However (and I’ve known this for years), they are a particular brand of “mind-only” Buddhist and they believe that we create our worlds with our minds and thoughts, and the difficulties I’m having are just exacerbated (if not created) by my having a skewed understanding of myself, who I am, and how things “should” be in my life/the world. They’re also very much into the idea that we create suffering in our minds, rather than it coming from the outside world. And that’s about the most bizarre distortion of Buddhism I’ve yet to hear. It’s common with American Buddhism, which is a strangely morphed version of “the original” that has people outside the West shaking their heads in bafflement. American’s (and perhaps a lot of Westerners) have their own spin on suffering and its causes, that is unique to them… not to Buddhism.

I’ve been through this kind of exchange with them in the past, and it always leaves me frustrated and exasperated. And it makes me want to fire them. I go to them for help with very real issues that I am reluctant to share (and have difficulty talking about), and all they can tell me is, “Change your perception of your difficulties, and that will relieve your suffering.” Oh My God. I just re-read that, and it sounds so ridiculous. Ludicrous. And it could tweak me into a migraine. But I’m not going there, right now, thank you very much

I’ll resist the impulse, because there’s a valuable lesson coming from this.

It’s a very strange sort of dissonance that takes place in that office, some days.

I have the hardest time actually telling people about my difficulties, and admitting how hard things have been for me. It’s so much easier to just cover it up and suffer in silence. Not always suffer, but just suck it up and deal with it. But there are times when I reach a point where I just can’t hold out anymore, and I need to discuss my concerns with someone — and also come up with a plan of attack.

So I work up the courage to go to their office with the intention of finding solutions to issues I’m having, which have been a huge source of distress to me. And we end up talking about how I perceive these issues that are causing me so much distress… “showing” me how my attitude is actually adding to my discomfort. I could be wrong (and I often am because my judgment gets all turned around and paranoid and narrowed, especially lately), but they seem to be encouraging me to acknowledge things as they are, see the hardships and accept them, and not let them get me down or stop me from just living my regular life.

Oh my God. Some days it is so exasperating. I’m genuinely having issues, and they really seem to think it’s all in my head.

Right.

Should I stay or should I go, now….? (I hear The Clash singing in the background.)

It’s complicated. This individual has helped me tremendously, in terms of getting me back on track with my professional life. That’s where their “sweet spot” is. I don’t have anyone close to me in my life who is actually mainstreamed in the way that I am. My family is very small-town and rural, which is not a bad thing. It’s just very different from my own immediate world. And my family is very religious in ways that are different from my own. With my neuropsych, I have had huge success in sorting out my work life, my relationships on the job, understanding the personalities I’m dealing with, as well as workplace dynamics, and that’s been more valuable than gold to me.

The place where they do NOT help me, is with my logistical issues and all those weird, distracting symptoms and anomalies that keep me on my toes.

Those, I need to sort out in a different way.

Which I shall do. I’ve found a rehabilitative neuro-optometrist near me, and I’m going to make an appointment with them to rule out any vision issues which could be screwing up my balance, as well as messing with my other senses. I just need to rule things out. I hope they take my insurance – I’ve got crazy-good insurance right now that lets me go see any specialist I want, without a referral needed. And I can’t afford a non-insured visit, quite frankly.

I’m also going to follow up with another neurologist about the autonomic testing. And I have a follow-up appointment with the physiatrist in a couple of weeks. I’m going to see if I can move that up — or out — because the appointment coincides with my first week on the job, and I need to clear up my schedule for that.

Plus, I’m really bumping up my commitment to fitness, keeping healthy, and strengthening myself. I’m dealing with the issues with my upper back (my traps are not as strong as they should be, and my upper body needs more strength, while my lower body needs more flexibility to accompany the wider range of activity I’ve been giving it. I no longer sit all day, like I used to, and I’ve been walking/hiking a lot more. So, my legs have to get used to that.

I’m basically taking things into my own hands, health-wise. And I’m investigating new ways to rehabilitate myself.

There’s a world of hurt under the surface of my daily life, and I can’t seem to get help from the “standard set” of people I’ve been looking to. So, I’m branching out and expanding.

And that’s exactly what I’ve been needing to do.

Onward.

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Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

11 thoughts on “When getting no help is the best help of all”

  1. I can relate to your frustration. I am also branching out, trying to connect with those who have been through this. I share what works for me but this whole emotional side of journey sure is tough. I look forward to your future posts!

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  2. My friend suffered from a traumatic brain injury from a long time ago and it wasn’t until I stumbled onto a record unbeknownst to him that I believe his story of being in a coma and how it affected him and his life. I must say that I doubted for many years and treated him nice enough to be his friend but now realize that he just didn’t have quirky behaviors that bordered on creepy to people at times, but he had a whole other life before I met him. I feel very bad, not so much at how I treat him but because I privately blamed him for his life becoming a total mess. Your blog helps me to understand more but the man is in need of help and he talks how you do and how he needs to take matters into his own hands to get well because the system knows nothing much and gets him wrong. I’m starting to think that he is right. But left on his hands, I see his life as very unfulfilling and very unhealthy and he admits that he is not happy but says the point of life is not to be happy. It seems he is rationalizing doing nothing for himself. I fear he will end on the streets. Can you make a post on how people who care can help someone like this. He has turned into total cynic and seems content on dying a slow death and never really living again. He trusts nobody. This is hard to watch because he has many talents and he is a good person. I’m one of the last people in his life who has not given up and/or thinks he is a loser or lazy or crazy. He tried going to church and finding community that way but rightly says he doesn’t fit in. People take him the wrong way and now he says that he wants to give up all talking. He says that improving has been worse because he know understands that he has been mocked by everyone and he is done pretending so that he can be accepted. His intelligence seems high in many ways but he thinks that he is dumb. I can’t be his friend anymore because he doesn’t trust me and he lives in his past and he brings me down. I’ve lived in same place as this guy and he is normal in so many ways. He yells and talks in his sleep constantly and says he is exhausted when he wakes and that it has been like this for over 25 years. Do you have any ideas for him. He saw a neorologist for one visit and said the guy wanted to take his driving priveledges possibley but further testing was needed. He trusts no doctor anymore. But I know these doctors and they care. He says that he has been defeated by life but I think he has more in the tank and wants to work. He says that it is useless now and that he will never be accepted in society and it doesn’t matter anymore. He defends his doctor of the past but says that was his lifeline to world and it’s gone. He says that people need at least one person who understand him and that he had believed that he had that and found out that he was way wrong and that it’s nobody’s fault. Nobody can grasp what it is like to work so hard to get going after brain injuries and he doesn’t blame his support for throwing in the towel and that he shouldn’t have woken from coma. How tragic. I am lost as to what to do. If I leave his life, I am not sure he will take care of himself enough but he refuses to go into residential care and has no money and is against government help. Well, he will make it in his way I’m sure, he is a survivor but I’m telling you this guy has much to offer and has been mistreated and just says thats the way it goes and he says if you don’t have anything positive to say or do then do the world a favor and hibernate and that is what he is doing.

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  3. Thank you for writing, Paolo. You are both in a very difficult position – each of you for different reasons. Your friend has a challenging road to travel, which only someone with TBI can 100% understand. And you are in a unique position to help him and possibly let him know he is not alone. Not many people stick with TBI survivors when they continue to have problems. Everybody just thinks we’re faking it or we’re trying to get off easy. Untrue. Our brains just don’t work the same way as they used to, and getting used to different ways of functioning takes time — and it may never happen 100%.

    It’s a shame that his doctor turned out to be not helpful in the long run. It happens. And yes, it’s also nobody’s fault. it’s just how things go, at times.

    So, what can you do? About 5 years ago, I discovered a program called Give Back that helps TBI survivors get back to living their lives — and they do it through survivors who have been successful teaching others. There is one paper particularly that I found really encouraging — the models of exceptional recovery – I have linked it below. And there is a guide for people who want to help others, like you want to help your friend. I hope you find these useful.

    Here are the materials from Give Back I downloaded in 2010, which you may be able to use:

    Models of Exceptional Adaptation in Recovery After Traumatic Brain Injury: A Case Series – https://brokenbrilliant.files.wordpress.com/2010/12/models.pdf
    Give Back – TBI Self-Therapy Guide – https://brokenbrilliant.files.wordpress.com/2014/03/self-therapy.pdf
    Helping Your Family Member to Recover from Head Injury – Part 1 – https://brokenbrilliant.files.wordpress.com/2010/12/hepufam_section1.pdf
    Helping Your Family Member to Recover from Head Injury – Part 2 – https://brokenbrilliant.files.wordpress.com/2014/06/hepufam_section2.pdf
    Helping Your Family Member to Recover from Head Injury – Part 3 – https://brokenbrilliant.files.wordpress.com/2014/06/hepufam_section3.pdf

    Also, the book “The Brain that Changes Itself” by Norman Doidge, was the work that kick-started my own recovery process, a number of years ago. It’s real stories about real people from many walks of life who worked their way back from brain injuries or other limitations.

    I will write more in my blog to discuss situations like your friend’s. It’s just taking me a little time to collect my thoughts, because it is such a big topic, and it’s also very near to my heart.

    Thank you for writing and best of luck to you and your friend.

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  4. Your response is very much appreciated! This whole subject is very difficult for the people around the survivor. It’s sad but I understand why he wishes that he hadn’t woken from the coma. I can’t imagine what he went through 25 years ago and when I ask him, he says that he doesn’t know either. He says that not realizing and not being aware, enabled him to make a recovery. He says that the worst part is that he feels angry but that he knows that he has nobody to be angry at. He thinks that people are angry at him and it makes sense to him. I read more of your blogs and I see how you say that you have mellowed out some. I think my friend has mellowed out too much. I’m learning about him- he was a high achiever type before his accident. Now he seems so content with nothing. I can’t understand. Maybe He is very depressed. I used to get frustrated and tell him “move-on dot com” because he seems to care too much about the person that he was and not the person that he can become. He talks about 1980 as if it were yesterday and says he “missed the 90’s” and all the talking in his dreams that I hear down the hall, he says it is with people who he has not seen in 25 years. Sometimes I think he is awake or hallucinating or talking on the phone because the talk is so clear and so ongoing. He says that his accident caused his dreaming to be much different. But the guy looks normal and he acts OK most of the time. Nothing makes sense about him sometimes. And other times he seems so rational and so together. He complains of these problems that I can’t see. He says that social situations exhaust him and it is not just because he is a shy type. He says that it takes effort to figure things out, but he socializes really well. He tells me that it is all learned and that in the 90’s was laughed off dates and used to stare on benches for a year or two. The guy is honest in every other way. Could he be lying on this? This “Give Back” thing looks like something that might be useful. I will pass on the information to him.

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  5. Well, I have to say, getting laughed at and staring on benches for a year or two sounds really familiar to me. And no, I don’t believe he is lying. Social situations are extremely difficult for many people with TBI. There is so much going on, and a lot of it happens at the end of a long day, when anyone with brain issues is going to be worn out and less able to keep up with social interaction. For me, I just stay away and I am very, very careful about when and where I interact. Most of my socializing happens at work and in small talk with neighbors who don’t want to discuss much, anyway. They just want to “check in” with their neighbors and be reassured that everything is going to be okay. Interaction with other people tends to baffle me. How can they be so shallow? In the end, I think most people just want reassurance that they are not alone, and that they have something in common with others.

    I figured out how to provide that to people, even though I don’t have the same need for reassurance that they do. What do they know? Not nearly enough. Not what I need from them. It’s nothing against them – that’s just how they are, and unless it’s harming someone else, I have no issue with it. Simply put, there’s not much in it for me, so I interact with others just to have a connection with someone — even if it is one-sided and otherwise un-interesting to me.

    With TBI, one of the biggest problems for me has been finding the ability to love again. To feel something. Anything. For/about anyone or anything. For a number of years, I was pretty much of a zombie, locked away in my own world of hurt. The thing that helped me, was having someone there to talk to who did not judge me or push me to be something other than what I was. For me, that was my neuropsych (who seems to be aging more rapidly than I expected, so they are starting to have cognitive problems of their own). For your friend, that can be you. I didn’t even need that one person to understand, necessarily, just to let me talk, let me be, and not push me to be the way I once was. My spouse has had a very hard time with my personality changes, and they didn’t feel comfortable or safe around me for quite some time. Now that is changing back, but there are still times when the old fear and hurt and resentment (that I “left” them after my TBI and the person I used to be, was nowhere to be found). Having that One Person there, who was consistently there to meet with every Tuesday at 5:30, was incredibly stabilizing for me.

    For your friend, you might consider setting up regular times when the two of you get together. Just to have some symmetry and stability that he can depend on. It sounds formal, but it can be a big relief to just have something set in stone that is always that way. Maybe one day a week you have dinner together. Food is good. Everyone likes food. And you hang out. No pressure. Just hang out and spend time. A regularly scheduled activity without “strings attached” can be helpful.

    Well, that is the idea. As much as you question the things that he says and does — and it probably does seem a bit odd, compared to what others do — accepting him for who he is right now, and where he is right now, is worth its weight in gold. We just can’t find that everywhere. Plus, in the process, you may learn a few new things about yourself.

    Thank you for caring and have a great day.

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  6. BB, I feel very shallow for the way that I’ve treated him. You are right. I’ve learned a lot about myself. It is natural but not very strong of people to dismiss any individual who obviously has no ill-will and who lives in misery. And maybe it is me with the false pride. TBI is like any other illness in one way- other people would rather not be bothered. Until it hits home, and even then we as a society, are getting more comfortable with putting individuals even their own parents, in the hands of others to care for them and we fool ourselves by thinking it is best for them. Yes, I do understand that many of us are working from necessity and we have our own kids to tend to. I’m only suggesting that people maybe take a good look at themselves and ask “is it really best to put our parents in a home that is not their own or that of their children or siblings?” If the answer is yes well then so be it, in some cases there is little choice- I get it. But in others, it seems that a third car and a vacation house is the deciding factor. This is a very sad statement. TBI survivors can end up like the 90 year old- forgotten. I will not forget my friend even though he was forgotten years ago and even though he defends those who forgot him. He says that’s the way it goes some times. And that if he were in their shoes, he would have reacted the same probably. I’m not him. P.

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  7. Well, don’t be too hard on yourself. The important thing is that you are aware of this now, and you can be the type of person you want to be. We all do things based on what we know and desire, and getting to the point where we know more and desire less, can can be a very long road to travel. Many never get there. I agree with you about parents and others who are passed over and cast away out of convenience. My siblings and I have figured out what we will do with our parents, should they become unable to care for themselves. We will not let them disappear. We will all pitch in and help as best we can, with the resources we have, so they can live their full lives in dignity. That is the only way we can live with ourselves. I don’t understand how others can choose another way, but it’s not for me to judge, and in their shoes, I might do the same thing. It wasn’t always this way. Once there was respect for elders and people made the time. Now… I just don’t know.

    The same is true for people with TBI. When I was much younger, I had relatives with TBI, stroke, brain cancer, and they all ended up “in care”. And everyone left them, if they didn’t leave/die first. I was too young and inexperienced to know how to help, so I didn’t. I still don’t feel right about it, even though I could not have done better.

    What I take from all this, is that I need to have compassion and patience with everyone, regardless. The world can be cruel. I should do my best not to add to that. In the end, that’s where I believe our shortcomings help us — to become more human, and of better service to others.

    So, our regrets need not be wasted. They can be used for much good.

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  8. Yes, I had a man in my life who helped me tremendously. He had a stroke and had no family and was put in a home. I visited him once. He recognized my voice and the visit was very important for him. But I had little experience in life and was too preoccupied with my own problem at that time. I won’t be too hard on myself either. Thank you!

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