Why is there so little understanding of brain injury and cognitive impairment out there? The only “treatment” presented to me has been to lock me up in a psychiatric facility, and that hurts.
I want help figuring out how to cope with New Brain, how to manage emotions without being able to think one’s way through, how to relearn how to function (prepare food, get dressed, etc.), you know? That doesn’t mean that I am “crazy.”
I know I can’t do it on my own anymore, but I don’t know where to turn or how to get the right kind of help.
Thank you for letting me vent here. It slows down the fear/frustration train.
I have been in your shoes…Here, go here they will help you!..Help my ass!..The people in there treat you like your F’en crazy!
I have no answers for you…But when I got out I promissed myself NEVER AGAIN!
My helpful wife put me in there?..Soon as I got on my feet I ran away, devoreced her, I still have my problems, but I dont have a nag with all the answers micrmanaging me!..Sorry for the rant, but for a guy with bad memory I remember it like it was yesterdy!
My writing is in reference to the lack of support from professionals.
From my experience people who have knowledge of cognitive dysfunction from a brain injury, maybe in a sense know, but there knowledge is always in reference back to them. Their knowledge is their enjoyment and they enjoy turning knowledge around in their minds. When I have sat in the office, with these so called professionals, the office visit always benefited them. I always felt I was fertilizing their own areas of expertise. After all, I understood I was not as intelligent as they are and it was understood I could not define proper intellectual boundaries for the problems I was dealing with. So in my observation these professionals are simply curious about the mind, but it is also a deeply personal need.
The need is their own intellect and knowing they know something. Their knowing is wanting to understand how the brain works, and yet they cannot see into the heart of things, because the understanding is always about themselves. Their act of seeing is virtually sustaining their concentration. When I have left their office everything remained hanging in the air, involved, complex and exhausting. It forced me to stop trying to make contact with others. I wanted a key to understand the whole and for me the key moved from “What if?” to “It is!” In other words, it made me antagonistic toward others and provoked me to reject people.
Because of my rejection of people this created a madman, who imposed patterns and I projected erroneous ideas onto every circumstance. This taught me how to be out of touch with life and I had nothing but delusions to substitute for life. The more normal mind seems to perceive patterns and is with more clarity. The key to unlock this dilemma, from my experience, is to recognize this activity of judging and dividing the self into judging and judged parts. This judging mind creates the madman or a mild eccentric crackpot. And if the professionals observe this madman, this will emphasize their thinking over doing and they become intensely involved in their thoughts. They just do not know their mental world is the exclusion of everything else.
There is not much money in this complicated issue and pharmacuticals are where the money is at in medicine. I have to deal with my incompetent GP that is so lazy he has not bothered to read any of my file so how can he treat me. If you have the cognitive ability you need to track down a Neuro Psycologist or two that will take you as a patient. I have seen several and where I live there are incompetent ones too so you need to find a local TBI support group and ask around.
Reality is that Drs are experiencing a huge level of burnout. In the USA especially. The insurance co’s routinely stop paying for anything and specialists are used to making upwards of $600,000 a year.
It’s just greed and the money siphon being threatened.
Try to treat yourself. Look into things like CBD oil and Biohacking. Seriously, Drs are not going to do you much good. AND when they do discover a “cure”, it will be about $800,000 a shot and you won’t get it.
Hang out with smart people who are doing amazing things with the brain and body. It’s your only hope.
You’ve summed up my experience with such fluidity and concision. Reading your comment is one of those relieving, someone-else-walks-this-path-too moments.
The madwoman in me is on a tear-- frantic, animal-like, fearful. The desire for safety and my new mistrust of others makes isolation the only refuge. But there is no refuge when the prison is your own body and limited mind.
Understanding. hmmmmm that is a complex issue. Some people have a knowledge, where that knowledge is gained from makes a huge difference. If that knowledge comes from personal experience in managing a disability, this may help. But as Karyn has stated elsewhere, you and you alone know your abilities. Others may/will have an opinion, often an uneducated opinion and these are the people I have learnt to ignore. Even some highly educated dr’s have little idea of this reality. I say ‘learnt’ because initially I tried to push myself past my body’s own new limits to meet both my own and others expectations, only to drive myself into the ground (HINT: Do not do this). If I can’t meet my own expectations, there is no way I can meet other people’s ideas of my own limits. This was very self destructive and I learnt that the hard way. I say this above on a personal level, as a survivor of a BI.
But now I’d like to give you some information from a professional level.
In my former life I was a Living Skills Teacher, teaching people with disabilities how to manage their day to day living, within the community. The skills that most people, including myself, took for granted. Cooking, cleaning, shopping etc. But then those abilities were taken from me and this has given me a totally different outlook, which is partially why I’m here, not just to help myself but to also help others on this hellish route we are on.
I’m in Australia and the services available here and how to access them here will be much different to those available in the U.S., but in basic terms the theory is still the same. Like here there are agencies who can assist. It’s a case of networking. You may be able to talk to your pcp, who may know of services. There are also Brain Injury associations, they too will know of services and how to access them. Some are state based, some are federally based, they should know what services are available within your regional area and how to access them. I know here that there are specific criteria that have to be meet to access specific funding. For example, disability was once all pooled together. To gain access to funding you needed to have an IQ less than 80, but for many people with physical disabilities their IQ was often 100+, so in reality their IQ was irrelevant to their disability. The people in govt, eventually, acknowledged this and split differing disabilities into categories. Physical, intellectual and brain injury were the three primary. From there they were broken into subcategories to cater for specific needs. By breaking them up it distributed the funds more evenly. Presently they are, in some cases anyway, adding mental health. This is a good thing because it is now being acknowledged that a BI doesn’t just affect you physically, a BI doesn’t just affect you intellectually and a BI doesn’t just affect you mentally. IT CAN AFFECT EVERYTHING. I say the breaking up of funding was a good thing because although an individual may have an intellectual impairment, their IQ may not have been low enough for them to qualify. But when you add the physical and the mental aspects of their injuries they more than qualify and can gain assistance and funding for each aspect to cover whole of life needs.
Finding a good agency can be difficult. Some have very inflexible criteria, ie IQ less than 80. What I used to try and do was ‘tweak’ things a little. For example the average IQ is 100, so a person with an IQ of 90 is below average, but above 80 and therefore not eligible. So I’d expand the impact of their physical impairment or emphasise the mental impact (which was not hard because if they didn’t get assistance, the mental impact was going to get worse.) In a clinical sense, medical people like things to fit into ‘boxes’, physical in one box, intellectual in another but often we don’t fit just one box. In fact, in all my years working in the field I never once found a person who neatly fitted in one ‘box’. They may have been labelled as such by the dr’s but when working with the person I found the ‘box’ inadequate for their specific needs.
Someone spoke about making a list of the impacts to your ‘normal’ life, do that, make a list. It can be a little confronting looking at all of the ways your injury has affected your life, so please make sure you are in a good headspace when doing your list, but be honest. You are not a ‘madwoman’, just like I am not a ‘madman’. I am however a person with a brain injury and I have to manage it the best way I can. A ‘madwoman’ would not be here asking for assistance. A ‘madwoman’ would be blaming everybody else and would not see the need for assistance. Asking for help is the most sane thing possible.
Now whether any of these contacts will be able to assist you directly, I am unsure. But even if they can’t assist you directly, ask questions. Find out what other services are available to meet your specific needs. As always, it will be a case of sorting through the agencies available. Some may only be accessible for individuals who have undergone neurosurgical procedures or professionals within the neurological profession, but even so, if they can’t assist ask them who can. You may need to develop your own ‘network’ of agencies for your own needs.
I truly hope these contacts help in giving you some direction to obtaining the assistance you need.
You say “Be assured your reaching a hand out to an internet stranger makes a difference.” And for that I am pleased, but it works both ways. For a while I had what I call the ‘poor me’s’ or self pity. Reaching out not only helps others, it also helps me. It gives me a positive amongst all the negative. Things happen for a reason and although some may see self pity as a result for me it has been a negative result and I have a need to change my paradigm to positive. This is something that I did via my work, but now that I can no longer work that outlet has vanished. This site gives me that outlet to assist others and therefore assist myself.
As someone once said “No man is an island” but a BI can be one of the most isolating conditions known. I’ve lost count of the number of times people have said “…But you look OK…” and I tell them “you want to have a look from this side” Looks can be so deceiving and some people (in fact most people) judge on looks. If you hurt your leg, you limp, it’s fairly obvious you have a sore leg. Now take a BI, in many cases there is no obvious outwardly signs, but the impact can be MASSIVE and yet the understanding can be minimal. That lack of understanding can often be overwhelming especially when it comes from family and the medical fraternity, isolating us even further. We may not wish to be that island but others can push us to that point where for our own mental safety we see isolation as the best course. This is why this site has been a godsend for me, it gives me an outlet to assist others in a similar position to mine. Using my negative experiences in a positive way.