[Phyxius]

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.

[vini]

Originally Posted by Phyxius

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

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

[concussionkate]

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.

[pcshealer]

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

[Hockey]

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

[Phyxius]

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.

[Hockey]

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

[Mark in Idaho]

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.

[Phyxius]

Originally Posted by vini

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

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.