Somebody dear to me has a TBI

[Ty Daly]

Hello, 

I came across this site a few days ago as I was looking for resources that would help me understand people with traumatic brain injuries. See, my sweet sweet girlfriend bonked her head pretty good 3 years ago (long before we were dating).  As a result she is still suffering from memory loss, headaches, fatigue, insomnia, and depression among other things. The doctors say nobody can ever understand her, and she will not get better.  She doesn't even understand herself.  She is a completely different person than before the accident and doesn't know who this new person is.  She doesn't know what to do in life, so she tries to do what other people tell her she is supposed to do to make them happy. She tells me she feels her life is pointless, her life is hopeless. It kills me to hear her say that.

I read through a bunch of Debbie Wilson's poems and felt really touched by them.  They described the same things my girlfriend has described to me, and it hit me pretty hard when I began to see how she was feeling. I printed them out and watched as she read them.  She read "When I look in the Mirror" and asked if I wrote it (i said yes, haha).  In the middle of "Broken Dreams" she began to tear up.  By the third poem it looked as if she realized for the very first time that she was not alone in the world; there were other people who actually shared her feelings. 

Debbie, if you see this, thank you so much for posting those poems. I mean it.  I am hoping this will be a stepping stone in the path of recovery for my girlfriend.  She means so much to me and all i want to do is help her.  

It's hard dealing with a situation like this.  Sometimes I just don't know what to do. Anything I can say she has already heard ten times before.  I can't tell her what to do, I can't tell her "i know" because I don't know, I can't tell her "it's okay" because it's not okay, and I can't tell her that I don't care about her old self because she does care about her old self.  The only thing left for me to do is keep giving her hope, keep telling her things will get better, that the doctors don't know what they are talking about because people get better than expected all the time. 

If there is any advice you have for me, please share it!

TD

[Debbie Wilson]

Wow, TD I really don't know what to say other than I am so glad you found my poems for your girl. I am going to tell you the truth. She is so lucky to have you. You are sensitive, kind, and searching for real answers to help her. The Docs do not know it all. If you can hang in there with her and she is willing to try her best things do and will get better. No, she will never be the same. The only question to ask yourself is do you love this new girl? If you do stand by her if possible! The hardest job in the world is being a close loved one to a brain injury survivor. You are truly special. If you want to read some more poems visit my blog  http://www.noahsarkconsulting.com

[Richard J]

Having you being with her is a gift from God. Healing and recovery is a long strange trip. Unless her doctor (or her doctors family) also had a TBI, they can never understand what the recovery process is, so they speak in riddles. They can only tell survivors the bad things that can happen... never the good things. That's what they told my family and I prove them wrong daily. Find a local TBI support group. Those support groups are probably there but sometimes it's hard to find them so talk to your states Brain Injury Association or nearby rehab centers. And then go with her to give her strength. In my own group, we have survivors by themselves or with a family member (or caregiver) and it's great. We talk about anything and everything: giving ourself's tips & tricks concerning our recovery; laughing about how stupid the doctors (& nurses) are about TBI; joking about how misinformed the general public is about TBI; and how WE SURVIVORS will be a voice for all survivors.

[Debbie Wilson]

Richard is right on the money! Finding the right doc seems like one of the hardest processes. Finding a support group would be the way to go. One note of warning. There are support groups that encourage and give us real hope and there are groups that can pull us down. Make sure it is a positive group where people are trying to go forward in life.

[Ty Daly]

Thanks guys! She has been thinking about going to a group, but hasn't yet.  I think she is afraid that a group is her last chance to find somebody who understands her, and if she ends up going and nobody understands her, she will feel there is nothing left to do.  It's kind of her last straw of hope, and she doesn't want to lose it.  I'm hoping that since she read the poems she might be a little more willing to go, but it's still her decision.  I'm just trying to gently nudge her in what is hopefully the right direction. She is a very independent, "I can take care of myself" type of girl who does't like to be pushed around or told what to do.  And to be honest our relationship is a little bit rocky right now, but we are trying to get through it. (we are both 22 years old, and are only 3 months in. But this girl is something SPECIAL)

Debbie, I noticed on another website that you have a book.  --> Book

Could you give me a little information on the purpose of the book and what it is about? Thanks.

You guys are great!

[Debbie Wilson]

Ty actually the Brain Injury Association of HI published my first book of poems and prose in 1996. There were only 500 copies made. I have another book being published this year and I will let everybody know the name once I figure it out. The local high school is helping with spelling and grammar. The name of the first book was "Life Has Changes." I doubt you can find a copy and I do not have anymore. This group will be the first I tell the details of my new book too.

Ty Daly said:

Thanks guys! She has been thinking about going to a group, but hasn't yet.  I think she is afraid that a group is her last chance to find somebody who understands her, and if she ends up going and nobody understands her, she will feel there is nothing left to do.  It's kind of her last straw of hope, and she doesn't want to lose it.  I'm hoping that since she read the poems she might be a little more willing to go, but it's still her decision.  I'm just trying to gently nudge her in what is hopefully the right direction. She is a very independent, "I can take care of myself" type of girl who does't like to be pushed around or told what to do.  And to be honest our relationship is a little bit rocky right now, but we are trying to get through it. (we are both 22 years old, and are only 3 months in. But this girl is something SPECIAL)

Debbie, I noticed on another website that you have a book.  --> Book

Could you give me a little information on the purpose of the book and what it is about? Thanks.

You guys are great!

[Mark]

it a tough road a head of you not sure where you live but if there are any of the survivor network groups near you they are incredable when your friend is ready, I was isolated when i found my group, I am luck enough that craig who is the director of this site and the groups is our facilitator you leave with lots of hope after one of his groups, he is amazing I know there are like over 100 groups not sure where they all are but i think there is a map on one of the pages in this site i wish your friend luck and we will all keep here in our prayers welcome to the site

[phil espinoza]

I think that your girlfriend is experiencing what most (and myself) deal with when they deal with their TBI Symptoms.  I do "know" what she is experiencing...and how alienated we can feel sometimes due to the "unknown complexities" of TBI.  In fact, in almost most cases, no one could "really understand" the various and numerous symptoms that affects most with TBI.  The fact is, I have "Severe TBI" due to the fact that I was in a deep coma for 3 months from my accident...and Doctors told me they were surprised how many times I had major problems while in my coma.  One thing I do notice...when I do improve...as I have to get to this point I am in....I cannot "remember" the "improvement" and times I did get better, like memory....And so I would get "depressed" amd felt I was not getting better at all...cause I could not pinpoint or remember an "improvement process" of my symptoms such as my memory....my speech problems, my walking problems due to balance issues....It is sometimes hard for many of us with TBI to "really connect" to the process we may be improving with our symptoms....I think a good way to keep some track is to make a daily record of "any noticed improvements, by date and time she notices....and keep it as a record for herself.  And personally, myself, I try to keep physically fit by riding a bicycle...because it keeps me "thinking in terms of improving myself and keeping myself in shape and good bloodflow through the brain.  Keeping a "positive" attitude is "essential" for your girlfriend to keep positive and to continue to heal.  The healing process is "VERY SLOW" and she and yourself must work together and understand the complexities of brain repair.  It take an extremely long time for much to heal in the human brain.  Since there are over 1 billion brain cells, and when you think about 1 billion cells within the area of the brain..."That is alot of brain cells".  But, we do know that the Human brain "does continue to heal and learn until the second we actually die in life"...meaning, that her symptoms will probably improve whenever they do....cause remember, the "extremely complex and vast amounts of brain cells affected by damage" is very, very complex!  Our brain is like a universe...in fact...out brain is considered to be "the most complex organism in the Universe."  And it is! 

  what I'm concerned with, is that your Girlfriend keep Positive!  She must accept the fact that "We have an extremely Complex Brain Injury" and the brain heals extremely slowly!  But she can never give up on herself!  Please tell her...I understand and know how she feels...sometimes I feel like I am literally going crazy!  But, in no way will I give in to "negative" thinking.  I invite you to my sites and take a look at my picture when I woke from my coma...I was a living (almost dead) piece of flesh!  I actually have to look at this picture to fully understand and see that "I am healing!"  And "I will get better and Happier"!  And so will she!  Please let her read this...and tell her I said for her to find "something like Prayer" to always have "Hope" for a better tomorrow" - believe me - it will happen.  I'm rooting for her!  Okay?  And yourself, "acceptance is a gift"  You are probably a "hugh" part of her "healing process" - you give her "meaning" to "why she must heal - for herself, and for you!  Okay?  So, good luck to her-and to you.  Be strong, even during times you think you don't understand why we're going through TBI!  Okay?  God - (and yes, there is a God!)  He is deep within her and yourself...and "lean on him through prayer" and hope...that's how I lived through my TBI and still practice this even today!  Good luck!

My sites:  http://tbisurvivorsnetwork.ning.com/profile/philespinoza431    and also: 

http://www.facebook.com/perocker

[Geo Gosling]

Ty,

I read your post and thought you and your girlfriend could benefit from reading the two books I have written about the TBI I suffered in 1995. I was in a bicycle (me) vs pick-up truck (not me) collision. I was in the hospital for 3 1/2 months. I also fractured three neck vertebrae, broke ribs, collarbones, etc. My speech is not very good now because the part of my brain that regulates the speed of my speech...doesn't work to well. It's getting better though. I was pissed-off at everyone and everything. I am still pretty pissed-off but nowhere near as much as before. The books I have written are in no way medical. They are just about me dealing with all of the trials and tribulations I have had to deal with as a result of having to live with an injured brain. Other TBI victims, and their caregivers have told me that the books are very good because I don't "sugarcoat" anything and if they are a caregiver the books have given them a little insight as to how my brain thinks now. The below links are the best links to get the printed books:

Click here for My first book: "TBI Hell - A Traumatic Brain Injury ...

Click here for my second book: "TBI Purgatory - Comes After Being I...

You can also download them as eBooks at Google eBooks:

"TBI Hell" eBook

"TBI Purgatory" eBook

"TBI Purgatory is also available for the KIndle and both books can be downloaded from iTunes.

I hope your girlfriend improves but a word of warning: all improvements happen slowly, repeat slowly.

Geo Gosling

[e-mail]

;

[Sherry brill]

phil espinoza said:

I think that your girlfriend is experiencing what most (and myself) deal with when they deal with their TBI Symptoms.  I do "know" what she is experiencing...and how alienated we can feel sometimes due to the "unknown complexities" of TBI.  In fact, in almost most cases, no one could "really understand" the various and numerous symptoms that affects most with TBI.  The fact is, I have "Severe TBI" due to the fact that I was in a deep coma for 3 months from my accident...and Doctors told me they were surprised how many times I had major problems while in my coma.  One thing I do notice...when I do improve...as I have to get to this point I am in....I cannot "remember" the "improvement" and times I did get better, like memory....And so I would get "depressed" amd felt I was not getting better at all...cause I could not pinpoint or remember an "improvement process" of my symptoms such as my memory....my speech problems, my walking problems due to balance issues....It is sometimes hard for many of us with TBI to "really connect" to the process we may be improving with our symptoms....I think a good way to keep some track is to make a daily record of "any noticed improvements, by date and time she notices....and keep it as a record for herself.  And personally, myself, I try to keep physically fit by riding a bicycle...because it keeps me "thinking in terms of improving myself and keeping myself in shape and good bloodflow through the brain.  Keeping a "positive" attitude is "essential" for your girlfriend to keep positive and to continue to heal.  The healing process is "VERY SLOW" and she and yourself must work together and understand the complexities of brain repair.  It take an extremely long time for much to heal in the human brain.  Since there are over 1 billion brain cells, and when you think about 1 billion cells within the area of the brain..."That is alot of brain cells".  But, we do know that the Human brain "does continue to heal and learn until the second we actually die in life"...meaning, that her symptoms will probably improve whenever they do....cause remember, the "extremely complex and vast amounts of brain cells affected by damage" is very, very complex!  Our brain is like a universe...in fact...out brain is considered to be "the most complex organism in the Universe."  And it is! 

  what I'm concerned with, is that your Girlfriend keep Positive!  She must accept the fact that "We have an extremely Complex Brain Injury" and the brain heals extremely slowly!  But she can never give up on herself!  Please tell her...I understand and know how she feels...sometimes I feel like I am literally going crazy!  But, in no way will I give in to "negative" thinking.  I invite you to my sites and take a look at my picture when I woke from my coma...I was a living (almost dead) piece of flesh!  I actually have to look at this picture to fully understand and see that "I am healing!"  And "I will get better and Happier"!  And so will she!  Please let her read this...and tell her I said for her to find "something like Prayer" to always have "Hope" for a better tomorrow" - believe me - it will happen.  I'm rooting for her!  Okay?  And yourself, "acceptance is a gift"  You are probably a "hugh" part of her "healing process" - you give her "meaning" to "why she must heal - for herself, and for you!  Okay?  So, good luck to her-and to you.  Be strong, even during times you think you don't understand why we're going through TBI!  Okay?  God - (and yes, there is a God!)  He is deep within her and yourself...and "lean on him through prayer" and hope...that's how I lived through my TBI and still practice this even today!  Good luck!

My sites:  http://tbisurvivorsnetwork.ning.com/profile/philespinoza431    and also: 

http://www.facebook.com/perocker

[Sherry brill]

It seems that you are describing me in your blog. I am going through most of those things myself. I hope she realizes how much you do for her. Learning about tbi is the best way to help her. At least you will understand why she is going through what she is. A support group will help but she needs a psychiatrist to talk to and help her through the depression. There are many that also specialize in tbi's. Another thing I have found helpful is talking to someone with a tbi. Friend me on facebook or message me here and I will give you my number. I'm very good with therapy. I did it every day in my job. It helps to know you have someone to call to help you through something even if it's just a bad day. If u want to have her do something you are right to nudge her but you need to do it a couple times a day for days or even weeks. Sooner or later she will understand what you are trying to do to help her. Then it becomes her decision to do that and she needs it to be her decision. Never push too hard or she will just block it out. This site would be good for her along with many on facebook. There are many of us that would be a friend to her and help her. These sites can answer any questions she has and she can find out she is normal in our tbi world. We will help her as much as we can.

[Richard J]

Let me say this if "doctors tell her that the healing window is basically closed"... they are dead wrong.  It never stops. I'm just over 8 years and I know that I am still healing and that my brain is still re-wiring itself. Why do I know that? Because I believe in myself and things are still happening that amaze me when I can do something as easy as pie which, a year or so ago, took me forever .

[Geo Gosling]

Yeah, that healing "window" is total a crock of !@#$. The books these doctors read may tell them that, but it's total BS and I wish they wouldn't say it. My TBI occurred in 1995 and my brain is still re-wiring. I still see changes. They may not be very big or frequent now, but they are changes (improvements) nevertheless.