It has been over 5 years since my accident. I continued to work part time for over 2 years. After the injury, the first thing to stop was any life perks, such as all social and recreational activiites as work and family responsibility was priority. By 2 years, I was so worn out from everything taking much longer to do, so part time was about 60 hrs a week.
Shortly after stopping work, my youngest child left for college. By now, friends had stopped calling for the most part. The social circle became very small. Even though I may look normal, I dont get jokes quickly or respond easily. I also recovered from some horrible depression. I also have other medical problems that limit me. Since Im not married and my parents are deseased, contact with my kids is often all there is.
I have spent a lot of my time searching for help to recover, but evidently west virginia is very far behind, I have found this website and participated in conversations, but gotten no response. I have contacted our local voc rehab, but they dont return calls. I have heard through this site that there is a mentoring program, but evidently not available to those outside washington state or there is something I cant figure out.
This network says at the top of the page "you are not alone" but it sure feels like it. I just dont get it-there are supposedly so many with brain injury and I dont know any, and after being on this site for a month and not one person that has been here taking the time to respond, I dont see any reason to waste any more time here. I am a member on a ptsd website and it is nothing like this, however, its not about head injury.
Dear Mary, Sorry you are having such a hard time. Many of our population are dealing with so many issues we often become focused on ourselves and not reaching out to others .
In l990, Portland Oregon: there were several support meetings available but my condition didn't allow me to attend any of them I would be so exhausted by the time I got dressed , organized and ready to walk out the door, I'd have to turn around and go back to bed. I too lost friends and others kept their distance. Brain injury is so scary that even people with brain injury often avoid us.
One thing that helps me is to "remain positive" and "be patient" I remind myself:" There is no point in me getting impatient, getting myself all worked up wanting things to be differnt than they actually are".
Chronic isolation is one of the major tolls that brain injury can heap upon us if we allow it. I had to make up my mind that BI was not going to get the best of me. I wasn't going to give up on myself nor others.
No one is prepared for dealing with BI. We aren't taught in school about BI as a possibility let alone a reality. We are all learning from BI for the first time, THE HARD WAY (unfortunately) .
I am part of a a organization called BIRRDsong. We are a survivor led, peer organization located in Portland Oregon. We are putting plans together for having a Tuesday or Wed web meeting. We will be using WEB EX. Participants will only need a computer with speakers, a camera and microphone. We will send out a link to meeting attendees. You can also connect to the meeting by phone over the web. Would you be interested in joining us? If so let me know. Send your E-mail and contact information to:email@example.com. If you would like someone to call you, leave your phone number. (pass this on to others who may be interested)
The best way I've found to quickly get myself out of the doldrums is to stop focusing on myself and start reaching out to others. I learned this from the 12 step model- Carrying the message. At BIRRDsong we are practicing how to become messengers of transformation by sharing with others. I thank you for your post. This took courage and a willing/ seeking spirit. You are not alone. Brain injury can intensify our fears, sense of isolation and grief, but we have the power to rise above them. Wishing you all the best.....
I know what it feels like to be isolated and like you have found no groups in my.area. I asked the people at the NJ TBI fund what I should do when I get scared from my auditory hallucinations at night and they told me that they were only there til 5. I got a notice in the mail from the same fund announcing a free seminar for family and caregivers. What about us, the ones with no family that cares and no caregivers, can't they offer us a sponsor or someone we can talk to when we feel lonely? I was told that they had a program, but it was cut due to lack of funds/. I just recently found this site and when most of the people talk about the pain of lonliness and isolation I find out that they have a husband/wife or caregiver and children. I don't get it. They can't possibly understand the true pain of isolation that you and I do. I forget where you live, but please call me when you feel the true pain of isolation and have nobody to talk to because I am alone too. Here is my number (908) 975-3255. My name is Darcy. Did you try the web site that was in the response you got yet? Maybe I will, but I dont havea camera.
you are not alone either. You can e-mail me @firstname.lastname@example.org and I will give you my phone number. Same for Mary. I have a older computer so I got a camera to sit on top of my monitor. The logitech is a good brand and affordable.
Looking forward to connecting with you, Mary and others who want to join us and remedy this issoaltion situation.
Mary, I tried e-mailing you the other day at the email@example.com and it bounced. Did I miss something?
mary lutz said:
Thank you for your caring posts Darcy and MirahAlyn. After re-reading my post, I must apologize as it may sound insensitive to others and I certainly did not mean that. I am very glad for others who have family. I am glad it is me with the TBI rather than my kids. As Mirah mentioned the 12 steps model-seems that there are about as many TBI's as alcoholics yet no groups or support. Ultimately, I would hope to become stronger and share the message and volunteer my time helping others with TBI. I have spent most of my life helping others in one way or another and maybe that is why it is so difficult now. I will contact you Marih Alyn-Claire, and Darcy, my e mail is firstname.lastname@example.org. Please email me and I will give you my number as well Also, I have an apple computer so I think I can participate in the group, but I also have a web cam that my daughter got me for my old computer when she was out of the country. I couldnt figure it out but it is in the box with directions. I would happily send it to you if you could use it. I look forward to talking to both of you.
Mary ~ I would love to get to know you on the web..... there are so many here, and one can usually only handle so many friends,, time and energy wise.... I may not have the answers, but I will greet you and listen to what you have to say...... Where I am volunteering in the hospital, some of the volunteer's consider it boring and not much to do, but for me, there is so much to do that I never get done...... As we reach out to others we not only help them but we gain an inner peace within our own lives.... I will be here for you.....Let me know how it goes, and about your TBI, exposure is good for us......When I first went to schools to talk to pupils about wearing helmets it was hard, I even shed a tear or two, but now I love to talk to people, (and listen) to them..... I love to watch the videos here, there are so many good ones......that I am sure you can relate to. anyway, hang in here.... love to hear...."Rancher glen"