The purpose of this page is to work together as a community and to learn from each other's experiences. Please contribute and help ou! You do not have to have a disability to contribute to this page. You could be a person with emotional problems, or a caregiver, or a profressional with some good advice. Email me and I will post what you have to say (if it is appropriate for the page). Note: it may take up to 7 days for your posting to appear. Please email me your contribution:
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In the subject line of the email write Posting for Emotion Website
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This page will be updated on a weekly basis. Please check back for new additions. I am a brand new website, but hoping this page grows quickly. I think it could be very helpful to many people.
Person wrote in:
I was injured in 92 (MVA) and was a Glasgow III. My emotions are damaged and I can watch anything and shed a tear, not because I am sad but because what is being said is sad. I don't understand why but I guess it was the part of my brain that was damaged and hasn't recovered and most likely never will.
I know I'm susceptible to this and even though I know it can occur, I still shed a tear but I'm not sad! I noticed yesterday that I think I'm bitter about being injured (known that for years but it occurred to my mind yesterday) and I take it out on those close to me because I can get away with it. My friends before the accident have all moved on or become married and with children and I'm left here alone in my own little world. I'm doing great mentally and physically and have had a partner for the past 7 years but I still want my old life back and that's where I believe I am emotional and bitter. Please contact me for further information. I had a tutor for 2-3 hours a day for 5-years and that accounts for my recovery. I'll visit him this weekend when I am in his area.
Person 2 wrote:
Response to person 2: Thanks for writing. What you are experience is something that occurs way too often in survivors of brain injury. So what you are looking for are other people with brain injury who could understand what you are going through, right? I could do a little searching for you. I'll try to find things in central Texas, or even just cyberspace. I assume you are from the High functioning support group? In the mean time, check out some of the links on my site. I believe it is the Laughlin site, although I think you may have to sign up to be on theirs, which is ok. Other chat and information sites are( you may already know about): http://groups.google.com/group/brain-injury-support?lnk=srg and http://www.tbihome.org/index.html and http://www.braininjurychat.org/ and http://www.health-helper.com/brain/resources.htm and http://www.boomernet.com/tbi/lists.htm and http://www.braininjuryresources.org/chatrooms.html
Secondly, Are you looking to get into therapy as well? What kind of problems are you dealing with in your life? Were you able to go back to work, do things you enjoy? What's your friend situation like? Do you feel you have close friends who you get to spend time with on a regular basis? Are you looking for cognitive therapy or pscychological/counseling therapy? Let me know and I'll try to look into some of these things for you.
Good luck, but I will be back in touch after I hear from you. Do I have permission to post your question to my website? I think it's important for others to know that people with brain injuries who are high functioning still have to deal with challenges as well.
Person 2's response to Me:
Thanks for replying so quickly. I really appreciate that.
When you say I'm experiencing something that happens way too often, are you referring to the isolation I described? Or something else?
Yes, some of the things I'm looking for are other people with TBI, that may understand what I'm going through (and have gone through). I recently found the ABI/TBI Survivors Support Group ( TBI-SURV@listserv.tbinet.org), but that seems to be a collection of people with TBI all sitting in a room, staring at each other, saying "now what?" In other words, there's no facilitator, there's no movement.
I would prefer face to face support groups in Austin if at all possible -- I've done a lot of stuff in cypberspace and whereas that's okay, it's difficult for me to make connections with people when it's just words on a screen. I know in my head that there are real people with real feelings behind those words, but until I really get to know them it's hard for me to realise that in my heart.
I managed to find the braininjurychat site a while ago, but that had links to IRC based chat, which I don't always have time for.
I will read your site more in-depth; it does seem rather useful. It is rather dense with information, though. And thank you for the links you provided. As you say, some of them I was aware of, others not.
Yes, I would love to get into therapy. Unfortunately, the reality of it is that I cannot afford this therapy. Some time ago I was involved with the Texas Rehabilitation Commission, but there I was treated as a patient as opposed to a human being, and as if I was not nearly as high-functioning as I am.
What kinds of problems I'm dealing with in my life: Feelings of alienation, rage, and guilt; being cut off; feeling broken; feelings of being a failure; unworthiness; having a memory that works sometimes but not other times, with no rhyme or reason; some of the emotional problems that you speak of. I hit both extremes with this; sometimes I am not able to decide how I feel and other times I my feelings are too labile. I'm sure there's more that I can think of; how much time do you have? :)
Jobs: I have not been able to find something that I love doing, and to get paid for it. I was able to go back to work, but I have not been able to hold any one job for very long -- the longest held job I've had was a year and a half (that was the one I had most recently), with most jobs falling around three to six months.
Friends: I managed to find a woman who loves me for some reason unbeknownst to me. In some ways she's been a real godsend, but I am just not as 'into' her as I once was. We've been seeing each other for about 9 years, and we have an 8 year old daughter. Most of my friends are either people I've met online, or people that are her friends that I hang out with occasionally. Although I have some acquaintances in certain circles, I don't really have any real face-to-face friends of my own. There's noone that calls me up to hang out, and there's noone that I call for that purpose.
You asked if I was looking for cognitive therapy or psychological/counseling therapy. My initial reaction is "both!" -- part of my rehabilitation was seeing a cognitive therapist, but I don't know what the difference in between the two.
Are you familiar with the Indigo movement at all? I can shoot you some links if you're not. Basically put, Indigos are a special class of people, and compounding my TBI problem is that I am one of these.
Finally, yes, you may post my questions on your website. Thanks for asking.
My second response to person 2:
I was referring to isolation as being a common problem for people with TBI. Have you ever been to a support group by the brain injury association of Texas? If not, here is a link http://www.biatx.org/resources/go/support.html It is a support group right in Austin. I also thought (if you don't know about it) you might be interested in that they are having a walk http://www.biatx.org/ to support brain injury on Nov 10th. Other than that, I'm not sure where you would go for therapy, unfortunately if you don't have the right insurance coverage. Does Texas have something called the TBI medicaid waiver? If you don't know, you could ask the brain injury association (512) 326-1212 if they do. If you could apply for that, they might be able to get you some services that might be useful for you. For example you could probably benefit from counseling (in addition from a support group). Counseling could help you with your emotions, and dealing with your injury, frustration, etc. You could maybe also benefit from cognitive thereapy. The difference between cognitive therapy and counseling is that cognitive therapy deals with a variety of things such as learning, memory, reasoning, planning, problem solving, organizing, etc. At the least you might benefit from vocational counseling to help you be more successful at maintaining a job. It seems that you are ok with getting a job, but somewhere along the line, there are complications and you aren't able to keep it. Look into:
Anyway, I think you make a great point that most chats or listservs don't have a moderator/facilitator. So, either the conversation is stagnant, or issues are brought up that are never resolved. I would have no idea about how to do it, but it would be really cool to have a chat room that had several topics (common problems for people with TBI (memory, emotion, relationships, transportation, etc) and then people could post their questions under the appropriate category. For each category their could be a facilitator/volunteer therapist to help offer solutions or at least resources. Hmm..something to think about.
I'm not familiar with the Indigo movement. Love to hear more about it. Hope this information helps- even a little bit.
Best of luck,
PS I forgot to mention there is something called TBI peer mentoring. People in Houston have been researching it. I'm not sure if the study is over or not, but they might be able to point you in the right direction. I believe it could be by telephone, email, etc. Look at http://www.tbicommunity.org/index.html and call them for more information.
1) Someone Wrote:
Response: Wow, right back at you! It seems like you really have your hands full. If you lived anywhere near Buffalo, NY I'd tell you to get both your daugher and husband in my research study, which is designed to improve emotion recognition and processing. Anyway, you have a tough situation, and it would be nearly impossible to solve your situation via email. I'm not sure how you found my website, but I definitely suggest you get yourself, husband and daughter in respective support groups. But that