New here, with question
 

I have a TBI from a hydrocephalus shunt placement that went a little awry.
That was 3 years ago, and I thought I was handling it really well until the last few weeks. I've grown really angry about the wheelchair that I now find myself in and have no patience for the people around me.
I've considered cutting myself totally out of my family's lives because they are just more trouble than they are worth. I just want to start everything all over and totally reinvent myself and find a new way of life for the new me.
Did anyone else go through this? Seems that I would have gone through this before now. It has been three years. It's so hard to start over with so few tools to work with. I just know that I need a new start.

welcome
 

welcome

sorry you are going through this, there seems to be no set time for feelings with any injury and that go,s for family and freinds as well, all I can sugest is to seek more and as much rehabilitation as you can get and need , outside your family, my patner go,s to a carers support group that helps her to off load,
I think we go through all the emotions every day with this eg anger sadness giult ,ect with windows of its ok , the trick is to make the ok times longer

easy said huh , but I find getting out and trying to take action for myself helps

best wishes to you and your family

Hi,

I'm really sorry you have been going through this for so long without any relief. I'm glad you have been handling it well until recently. I have a very supportive husband and my children are supportive too, but it ends there. People really don't understand what we are going through every day.

It's amazing how people will come up to me and tell me how good I look or seem. It makes me angry inside, but I do keep a smile on my face. I really try to keep a good attitude, but there are times where I get discouraged and frustrated.

I think it's really helpful to vent your frustrations and anger out to people who will listen without judgement or trying to "fix it".

I struggled with my faith for a while when all this first started. I was mad at God and angry that I had to change my life so drastically. For the moment I am embracing where I am and what I am going through. I feel very close to Him and it encourages me most days.

There are still days where I really feel sick and I get angry and frustratred. I feel bad that I get so angry. My husband and kids are understanding, and I am so blessed by that!

I'm here for you if you want to vent.

Welcome, Phyxius!

I've had PCS for one year now and, like you, I've become frustrated at the lack of understanding in my family. What helps me to deal with that is to know that they really do mean well; they just don't know how to be supportive. For example, I often hear things like "just be grateful for what you do have" (which I am) or "you can't dwell on it" or "just hang in there," etc.


They fail to realize that I'm looking for their understanding and NOT their simplistic answers or advice. The more I can talk about my feelings with people who are supportive and empathetic, the more I can let go of those feelings of anger, frustration, or resentment.

Do you have anyone in your life who can understand and give you support? If not, I encourage you to find support through groups like this one.

I pray that you soon find new hope and a new direction for your life. :)

Don

Hi and welcome to NT!

I so understand the desire to want to run away and start anew. I think, at its base, what motivates that impulse is the notion that we would be starting again WITHOUT THE TBI. Unfortunately, that just isn't true: the brain injury is part of who we are and no matter where we go or what we change, it will still be there.

I know that family members can be frustrating, but we need them now more than we ever did. I think the trick is not to expect them to understand everything that is happening to us. Afterall, I don't even understand everything that is happening to me. I know I'm angry about what happened to me and I struggle (not always successfully) not to lash out against the closest and most convenient targets - my innocent family.

As others have said, we have to cast a wide net to get the support we need. Joining NT is a good step. Here you will find people who truly "get it." Searching the Brain Injury Association web page for a support group in your area is also a great move. A support group for the people who care for you can be an essential part of helping them understand your head injury and lowering the stress and tension in your home.

Try not to be too hard on your family. When I first got hurt I was so frustrated with how they were acting. I mean, what the heck was wrong with them? Then, in an all too rare moment of insight, I thought, "They haven't changed; I have."

I know it's hard, but try to remember that the injury can make us impulsive and reckless. Please fight against the urge to do anything rash you might later regret. When you need to vent, come here and we'll listen.

Cheers:hug:

Thanks to everyone who responded to my post. I appreciate any feedback I can get. I've felt totally alone in this and haven't really known how to navigate the course up to this point other than to act as though it didn't exist. I spent my 4 months in rehab after the hospital and left the hospital only to have my husband to leave me a week later. He didn't bargain for this. My father moved away a month later and I was left to figure it out on my own.
I did very well till christmas when I went to visit my family. Then I remembered them all leaving me alone when I was newly brain injured and newly wheelchair bound with no friends or family or a way to get around.

I'm in college now and the sheer difficulty of it makes me angry as well. I used to be so smart. At one time I was eligible for MENSA, now studying that would take the average student an hour takes me 5-6 hours of hair pulling and crying.

Oh well, sorry for going on. Thanks again for responding. Happy new year.

Hi Phyxius,

Dr. Diane Stoler, who is a neuropsychologist who has had one traumatic brain injury and two minor traumatic brain injuries plus other neurological disorders, talks about going through a grieving process with your old self. According to her, in order for us to get on with our lives, we need to bury who we used to be, grieve for that person, then begin anew with a new person. So, I think you are on the right track with wanting to start anew. I'm not sure it this involves excommunicating yourself from your family or not as I'm not a psychologist. But, like I said, it sounds like you are moving in the right direction.

Hi Phyxius,

Sadly, over 80% of marriages end after a serious brain injury. I'm struggling to hold mine together mostly using that "pretend nothing is wrong strategy" you mentioned. Yeah, I wonder how that's going to work out...

I know how hard it is to let go of your old self. I'm three years in and I still haven't managed it. However, one thing I've learned is to keep close to the friends and family who are postive and to drift away from the ones who drag me down.

And by positive, I don't mean the mindless cheerleaders who gush over how great you look, deminish your injury by saying they make the same memory mistakes, swear you're just like you always were (really!) and tell you that you'll soon be back to your old job. I'm never going back and these folks just depress me.

On the other hand, I have friends and family that have been great helps in my physical and emotional rehab. These people help me with my cognitive therapy without reminding me how quickly I used to finish the NYTimes crossword. They let me cry when I need to, but always urge me to move forward. The nicest thing a friend ever said to me was, "You're speaking far more smoothly than you were six months ago." This made me feel great because it was honest and I'd worked hard to get there.

I also have new friends since the injury. Virtual friends here and folks from my local support group; great people I never would have met otherwise.

Try to congratulate yourself when you achieve something. I know school is much harder for you than it was before. However, brain injury aside, most people never muster the intellect and work ethic to tackle college.

Cheers

Phyxius,

If you had MENSA qualifications in the past, you have a great background to work with. The likely biggest change you are trying to understand is due to that intelligence. Most MENSA types have that skill due to extraordinary memory functions. With those memory functions, they develop outstanding processing skills. Those processing skills are not necessarily gone, just different. Also, MENSA types often develop lousy study skills because they need so little study time.

I crashed hard in college. I hardly had to crack a book in high school, except for my sophomore year when I decomped. By the time I was in college and taking honors courses, I was ilequipped to study . My math and technology/hard science courses were a breeze. My courses that required study were miserable. I decomped in second semester and almost failed.

My suggestion to you is to slow down. Get help from your Disabilites Department. Tutors, extra test time, quiet study areas, etc will be very helpful and should be made available by your Disability Department. Your Disabilities Department needs to understand that your wheelchair is just your obvious disability. You need to tell them about your brain injury disabilities. Remember, our brain injuries are often invisible to others.

I would highly suggest writing up a one page explanation of your cognitive/memory struggles and possible accommodations that can be provided. Keep a few copies of this page in with your daily school papers. People will understand you better if your comments are in writing. Verbal requests do not get favorable responses as often. Hand them this page and ask them to read the whole page before they give you a response.

You might want to memorize a line like this: "I need you to read this so you can understand how to help me." If this line is memorized, it can be said without anguish in your voice. And, remember that it will take longer to memorize so take your time.

A standard four year plan may be too much for you, especially early on. Once you learn some work-arounds and accommodations and get the Disability Department assistance you need, you may be able to pick up the pace. Many have gone on to academic success, even if it just took a bit longer.

Don't let others try to force a square peg into a round hole. You are different now. In time, you will likely notice new skills that were not available to you as a MENSA type. Value these new skills, even if they are just an ability to sit and observe others as they scurry about like hampsters on a hampster wheel.

Vini, thanks for the warm welcome. It's nice to know that there are people out there that know what I'm saying. Though I don't wish this on no one, since there are people who already experience this-- then I'm glad I found you guys.

It's good to hear that your family is supportive.
I understand what you mean about getting angry. I didn't really get angry at God much but I stayed angry at my husband and family and sometimes the surgeon.
Thanks for the support.

I hear what you're saying about understanding. I have these people who think that just because I live alone and take care of myself-- then I can leap tall buildings with a single bound. There are others who feel like I shouldn't even be able to live alone or drive or do anything for myself.

I look forward to communicating with everyone here and giving as well as getting support.
Thanks.

Hi Mark,
Thanks for the response. I did use disability services last semester and they gave me extra test time and allowed me to test in the testing center. I've decided that I will need to find a new option when I take the math class again. They use that testing center for all placement tests and the procter was just LOUD. My biggest problem is that the the least little sound or movement distracts me beyond belief.
I'm thinking maybe I should talk to my doc about something I can do to corral my mind.
Thanks for your response.

Hockey, I wish I could hop into a bullet train and outrun this thing but I know that I can't outrun or hide from it. I just want to make sure I put myself in the position to be around people who are an empowerment and not an impediment.
Happy New Year.

Like I said, I've drifted away from the folks who bring me down and embraced those who empower me. Sometimes it's been a big surprise to see which friends fell into which category.

Cheers

Phyxius,

Glad to hear you have been using the Disability Department for help.

If the testing place Proctor is too loud, speak up. That is one of your needs, that the testing environment be quiet. I can be distracted by loud sounds, sometimes even quiet sounds. I have to take ticking clocks of the wall and hide them under a pillow sometimes. The ticking just gets louder and louder.

Speak to the Disability people and let them know you need a quiet testing environment. They can tell the proctor to be quiet.

Write this stuff down so you don't forget. I will have a Word document open for days as I slowly keep adding to it. Then, I edit it so it is understandable and not overbearing. I will have an opportunity to remember all of the important points by working on it slowly. It works for me.

recording device
 

hi

I have a recording device, so that I can record coversations and note.s to self so I can remember. things

that would just wizz by me other wise,

I say do you mined if I record our coversation funny how professinol folks tend to be careful how they treat me :winky:

I am so sorry to hear what has happenned to you Phyxius. My husband left me as well about 3 months after the bumps that changed my life. I since realised that I was the strong one in the relationship and simply didn't have the energy to cope with "sorting" him out and copying with myself. - you certainly find out who your friends are. There are also the people that say to you I don't know how you cope - well what else are you meant to do? Also the classic from the second psychologist that I saw was that many people would be more than happy with your test results! Der........ I'm not happy with any average, high average etc testing - average never existed for me, nothing below 90% existed, I could repeat conversations word for word, I was top out of 300 entering college.

I don't know how you are meant to forget your old self, maybe first acknowledge what you had and get over it - I have had counselling but it didn't really do a lot for me. I spent a lot of time trying to work out how it was going to work. Maybe if you were told it you think like this then this will help you over come ..... whatever.

I get annoyed with people who don't put any effort into what they are doing and saying - lazy thinkers and tend to avoid those that I can. I believe the higher the IQ pre accident the harder time you have coping afterwards - I did read that somewhere.

Sorry I have waffled on - I am good at that nowadays!

Lynlee

Sometimes I think there is something to the saying "ignorance is bliss". I think that sometimes it would be easier to give in to the lazy thinking-- especially with the diminished capabilities I've found myself with as of late. Fighting the fatigue, depression, misunderstanding and my own mind is very tiring and some days I wonder what am I fighting so hard against-- the TBI, or myself. I do understand though how some would prefer avoid the fight all together. I'm not ready to throw in the towel just yet.

Hey Lucy,

It is true that high IQ folks are the most aware of and dismayed by a TBIs errosion of their intellectual abilities. High IQ folks are also the most likely not to be diagnosed or to be flubbed off with "You're still smarter than most people - so what's the big deal."

I was high functioning to the point of scarey before my "accident." I struggle not to cry everytime I think of what some loser drunk driver stole from me. I weep not only for losing what I already had, but for all of my potential. I HATE my stupid new brain, but for the sake of my daughter, I'm trying to "move on." Still, notwithstanding the kid, if I ever think a TV sitcom is funny(30 Rock, excepted), I will kill my new (but not improved) self.

I believe there is a bias 'almost built in' to the diagnostic work done by Ph.D.'s and M.D.s. They see those of us who still test with very high intelligence and have that, "You are still so smart, you can't have a brain injury." Or "You are so smart, you are faking the low test scores" attitude.

Since they have never tested so high, they can not believe that we can be so dysfunctional and still have high intelligence scores. My first neuropsych labeled some of my performance on tests as at an extremely high level, Very superior, Very well, considerably higher level and other such terms. It is as if at some points, he is comparing me to his own testing levels.

He expresses doubt that these high levels can co-exist with my poor memory and processing speed without some level of malingering or highly guarded responding.

He thus suggest that I need serious psychiatric and psychological care and treatment. He even goes so far as to discount other test scales as invalid.

A later neuropsych even left out the validity scales as they directly disproved his labeling as malingering and psychological causation. The validity scales were at 48 and 49 out of 50 with 50 being absolutely no malingering or faking. The malingering part of the curve required scores in the 30's and lower. If the scores don't match the diagnosis, leave the scores out of the report.

How does the saying go? "Don't let the facts get in the way of your preconceived opinion."

It was like they were trying to find reasons an intelligent person could manifest these symptoms of poor memory and low processing speed but still score in the top 1 or 2 percent in the intelligence scales.

They blatantly disregarded the research that states that high intelligence scores and low memory and processing speeds can only be caused by an organic brain injury.

Their envy or whatever other motivating factor appears to cause them to need to dismiss our organic dysfunctions with a "You are so intelligent, stop obsessing about some minor memory or processing problems. I would give my right arm to have your intelligence."

It is like they expect a Olympic champion ice skater to skate at gold medal level even though their skates have dull edges.

The high functioning in intelligence tests cannot overcome the memory and processing dysfunctions. We know we can no longer work at peak performance levels because we never know when the monster is going to pop-up and tear our thoughts out of our mind. It is taking or has taken years of frustrating realization that our minds will not work at the historic high levels of the past. We may have occasional 'highs' but then, out of the blue, it is like someone turned the lights out in our brains.

The gut wrenching moments of understanding these limitations are played over and over as we habitually try to perform at past high levels and crash and burn.

I try to explain to others my limit at visualization. I tell them that I know that there is a wall and furniture behind me, but my mind cannot visualize any of that picture. Or, I can stop at a crossing street, look left and see the oncoming cars. I look right and see the oncoming cars. But now I have NO IDEA of what I JUST saw to the left. Some try to comprehend this scenario but most are just disbelieving or unwilling to believe. They express "How can you not remember what you just saw? It is right there."

I have learned to convert the visual picture into a verbal cue like, "It is clear of traffic to the left." But even these work-arounds can get me into trouble. How do we protect against the "brain farts" that just happen and stink up the works?

In my case, I accept that the brain farts happen and try to manipulate the environment to provide a level of safety in case my brain farts.

People may view me as stubborn or contradictory but these are my survival mechanisms. I live best with them. Without them, there are too many little fires to constantly need to extinguish and then explain to the ignorant.

The labels put upon us by those who think we set these fire on purpose or they are due to laziness seem to drag on behind us, no matter how much valid explanation is given.

And they think the problem is in OUR heads? A little effort to understand our dilemma would be appreciated.

At least on this forum, we are mostly with others who GET IT.

Hockey,
There is one sitcom that I like. I watch "the big bang theory". Sometimes I think that the character "Sheldon" has a TBI of his own. The cognitive inflexibility that I have trouble with, the Sheldon character is very bad with. You should give it a view sometime.

Mark, thanks soooooo much for your post. I just kept nodding (gently) my head.

I was lucky to have an excellent neuro-psychologist who clearly understood and recognized how brain injuries play out in the high functioning. He really went to bat with my GP who figured I was still "smart enough."

What outsiders need to understand is that deminished processing speed is only one part of the puzzle. People with serious brain injuries don't even have all the wires (axons) necessary to get proper imput and to process it. Mark talked about his difficulties visualizing. I just can't see patterns, which makes organization pretty much impossible. Like many of you, I am constantly bombarded with sounds (ticking clocks, multiple conversations, passing cars, ladybugs farting) that I can't filter or prioritize. Then there's the constant ringing in my ears. Oh yes, pain and fatigue are also great for cognition.

Ironically high functioning people are often under-diagnosed because what's left of our intelligence allows us to find coping methods. For example, before I'd had any cognitive therapy, I'd already learned to line up all the ingredients in order before cooking and to put them away as I used them.

All that said, I don't think lower IQ patients are getting a fair shake either. How elitist it is to say that that their TBI doesn't matter because they weren't smart anyway? I'm not great at patterns, but I see one here: the TBI patient can't win. Think about it, the TBI doesn't matter, either because you were too smart or too stupid before it happened. As always, the TBI patient gets shafted.

Mark
 

I totally agree - you have expressed it well, and hockey - I agree with what you have said about the low IQ as well.

One of my initial psychologists told me that it is worse if you had a low IQ as you did not have a lot to lose - so it would be more noticable!! Groan!!

Lynlee