connecting the world one person at a time
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.
I live in almost total-isolation,my home is filled with nobody but hostile relatives whom I hold no interest in speaking to due to their verbal and physical-abuse over the years.I do not drive and probably cannot drive because I have left-side spacial-neglect and a functionally blind in that eye.I was a recluse and an agoraphobe due to abuse and being ostracised by both staff and students for being trans and public-shaming in my alternative-school.So I quit that school at seventeen despite the words of my guidance-counselor and some staff members after I had already skipped over half that year because of the abuse I suffered.I then locked myself in the house with no friends and spent hours on the computer for days and days at a time never leaving the house and causing arguments between my parents and myself often leading to abuse because I would not step out.I only stepped outside to smoke.
In this time on forums and social-networking I made some loose-friends who I kept connections with as I spiraled deep into true depression for several-months in 09 as my agoraphobia got worse and I began neglecting myself.(I would not bathe for several-weeks even and I still struggle with that somewhat) I began living in a secret alternative psychotic-world where I was actually cared for by others for many parts of my problems.I lied deeply to people who I made as friends online not to hurt them but because I was afraid and seriously delusional,deep into schizophrenia even.My mindless idiot parents did not even know this,just that I cried way too often.
So with those friends online I made deep connections and even relations,commonly speaking over the phone and such living in my alternative world locked in my house.I would tell them fanciful tales of being cared for when I've been all but cared for by my family.I felt deeply enamored with one of these "friends"( a schizophrenic with tbi and other issues she was a saint just ill) who I always wanted to be a deep friend with however she only wanted more,a relationship if you will.She often told me we can never be friends.Throughout the time I knew her there was always serious threats she made in her paranoid state that I was hacking her accounts and computers.We had dissolved contact several-times though always she came back looking fot the "real me" (which I lied about until the end deep in illness) though there were good and bad times with her speaking to her even having her visit me twice(she lived across the states) this however dissolved in hate and fervor as she hired a PI to investigate me and my situation and whether or not I was hacking her.This shattered my whole world and made me more paranoid and hidden until my new friend had told her to stop who I also met over the internet and sadly also lied to.
Entering now a new phase,I found another friend(a very pure and innocent women who loves me no matter what despite my sins with her and my previous friend) she I instantly felt connected to finding her on an alternative web-forum.Still Living deep in this world of lies embedded within my schizophrenic and brain-injured head,I met her and we clicked immediately having a similar taste in music and a love for a particular-musician also caring for certain scientific subjects and having similar backgrounds and curiosities making ourselves up.This was still at the time I knew the other friend of mine however I was losing touch with her because of how rancid our relation had been throughout 4 years.I instantly fell deep into love with this friend of mine from the alternative forum on such a deep and pure level as had she for me.She would always ask of my situation and how well i was doing and if things had gone wrong in either situation we would call each other internationally(she lives in the Netherlands) and talk until each of us had calmed down.I slowly was relinquishing my true colours to her scared of this other friend now stalking me looking for the truth over a years time when caught in lies and such so I could come clean inside and be loved as a friend for who I am though deeply afraid due to my previous-relation of being myself.
It all fell out towards the first year I had spoken to my new and now current life-partner as my previous friend was stalking me daily on the internet,she looked for profiles of me everywhere on the internet and contacting people I had known on Myspace.She had reached my friend from the Netherlands finally.I died inside on this day to put a long story short as she was telling her everything that was wrong of the lies I had lived little knowing that I was still lying to her.I then spoke over the phone for over three hours that night to my friend about what was true and what was lies though swallowing deeper into my soul and psyche many of the lies I was trying to expel from myself.I am such a scumbag and I hate myself for this because she forgave me deep down inside and over time new truths came out as I fought my moral-enemy on the inside against my psychosis in full-force.Slowly over the months after this fateful day in January had new details begun to outpour.She each time had taken the pain in her heart and realised how ill I was and taken into account that I could not help myself no matter how much it hurt her psyche and she promised that she loved me unconditionally.I had been making progress too then,starting to live my real life as I thought as she lived vicariously through my ethereal layers of dreams.I started full-time regular therapy even paid for by her after several long-months of crippling depression and a lack of a doctor.
Then I had found my first and only job(it lasted 5 months on a very special basis of part-time) and my mother was the boss.This was my first job since quitting high-school.Just to cut things to the point it was hard and I could not function.In my frist weeks there I had made a very deep decision within myself and my now saint of a friend who I had been speaking to daily for hours a day through vonage.She made me realise how truly ill I was inside and accept the lies I had made in my head as a disease in need of healing.These underlying lies hidden to her in shame and alarm had driven me also through the promise of her unconditional-love and careful study of different medicines convinced me through concession to finally take medication.I knew SSRI's would only make me disassociate further and cause my psychosis to become worse so i opted for Abilify.This medication over time alongside the overwhelming work of service-sector jobs to my brain-injured and psychotic mind and the overwhelming shame covering over this storybook of hard-knocks I made my life to be.
Within two months I was constantly fighting the urge deep inside my mind to blab of the lies in my head to this saint who promised to love me no matter what.Debating deep within my mind the constant details of my lies and how to make them plausible.When one night we were speaking of the events of the previous years and how it had shaped us and made us stronger and she asked me if there was anything else.I struggling with details in my head had gasped and asked her "Will you still love me unconditionally forever and ever?".I felt the atmosphere sink around me and heard her gasp deeply as she knew this routine.I much like her had immediately began to cry as lie after lie had slipped my tongue and lies to shape those lies had come about only to be changed immediately afterwards.I grabbed my pill-bottle immediately and cried deeply with the open bottle on my mouth as I threatened to do it more and more imminently uttering in whimpering tears snot sobbing down my mouth and tears burning in my face "I'm a horrible person" and "I don't deserve you".
She told me how deeply she was hurt and how she felt betrayed however she promised me that is this was all and it never happen again then she would love me unconditionally again no matter how it pained her if only after healing.Throughout the night we sorted things out and started over from the beginning,crying deeply and making vague jokes over a 12 hour period on the phone.What mattered most to me aside from her pain was that in that saintly,selfless soul of hers she had promised again to love me.
There was now a loss of trust however and very understandable and no matter how it pained me I knew deep down why it was as such and I wanted in my heart of hearts to mend this.She knew now how ill I was deep down inside and now wanted a stricter regiment for my days.She had to watch me on webcam take my medication daily as a trust-builder and throughout the day I was not allowed touch it until it was time to do so before bed.To make a long saga short over time in this regiment and encouraging me to see my psychiatrist more often and 100% openness I began to heal and we began to heal together.With this I have become more wanting to step outside and do things with others because I have healed so much and also now because I met some new friends through an old friend of mine.
Im glad you have joined and have a place to share. Family, while most important, sometimes dont understand what we are feeling. I understand you completely. It must be very difficult moving to a new place.
I am glad things are improving for you. It does get better. It takes a lot of work and pushing myself when I dont really want to . Glad you have your family.
Trina Bradlee said:
Hi! I have just joined this group, and I can really relate to the isolation aspect of your comment. My family and I have moved to a small island in Greece, (long story), I have 9 year old twin boys, and my husband...I have very few people that I know on this island...my husband and children are my main network...and they are more to take care of than helpers...I don't want to complain...but thought you might understand, or at least relate to the isolation. I hope things are improving for you...things are slowly, gradually improving for me...it is a hard climb up a high hill though...all the best! God Bless-Trina
Mary, I am sorry you are feeling alone. I, too, have experienced significant isolation since my injury. I am no longer able to work. I can drive, but it stresses me out and I get lost easily, even in familiar places, so I don't go out much. I feel like my friends have moved on. Perhaps my new personality doesn't fit in as well as the old me did. It is a very sad realization. I, too, look normal, but I can see the looks on peoples faces when they realize I am not following the conversation or missed the joke. I am trying to make new friends who have no preconceived notion of what I used to be. People who will enjoy me just as I am.
I understand completely, and yes, my doctor warned me about isolating.... he said that is your injured brains' way of "shutting down" functions to give it a rest from not working so hard, since it is injured... or something like that! I am also in a state that is 1,000 miles away from "home' where my mom and dad and family and friends are.... The only person I have here is my best friend, who is a guy, who is slowly becoming more than a friend. I'm lucky to have him, because he knew me before my accident, and he knows how I "really" am... He believes with all of his heart that there are things we can do to help get me back to the "old" me..... I really hope he's right... I'm sure I won't ever be 100% back to normal, and I think he knows this, but he accepts that, and he accepts me and all of my problems, and there are times when he gets SO frustrated with me and SO fed up with the whole thing, dealing with my issues... It's hard for him to have known me before my accident, and love my personality back then, and now, I am a pretty different person, and not quite as "fun" or "happy"... I know I can be a drag. It kills me that the person that I used to be, who I liked and had all the self-esteem I needed, is SO different, and it will take me a while to adjust to the fact that I am NOT that same person in every way, and as much as I don't like it, I need to learn how to love myself the way I am *NOW*....
Anyway, he's been on the brink of just giving up when I have pushed him too far, which I don't mean to, of course... But, god bless the guy, he stands by my side, and he wants to see me get through this. He is pushing me to get in to see a Neurologist and then go from there to see if any of my issues can be dealt with... I know I take him for granted sometimes, but he really is a saint for standing by my side through this. I know I can be difficult. He knows it's not all my fault.... I just hope he won't leave me, and he sticks with me, because so far, he's all I've got, and I have no idea what would have become of me if he wasn't in my life... I honestly don't think I'd be here to type this message....
It seems like anything related to Head Injuries is hard to find support for, or help for... it's even almost impossible to get disability for a head injury... If only they had a clue that, for most of us, there is no way we could keep a job for very long... and that just adds to the frustration... A lot of TBI survivors end up on the streets, sadly. I wish there was something that could be done to better the whole situation :( You are NOT alone-- and I jump on this site, not often enough, but once in a while, and it helps me to feel like less of a loner.... Hang in there, we're all going through the same thing... People here have given me some awesome support and advice!!!
I'm here to inform you that you need to let God control you to overcome your isolation. To do this, I'd start with Subliminal Audios & Guided Meditations Sessions... The website that will help you turn your life around is www.jonathanparker.org, click on 'Store', click on 'Mental Mastery', then Powerful Memory & Concentration Title &/or Genius Power, then Electric Thought Audio which entails Speed Thinking & Mental Alertness. The individual, J. Parker is well known (been ov TV, & has sold Programs in over 75 countries worldwide). I also have extensive knowledge of the Subconscious Mind & can help you turn your life around, which has so far done for me even though not completed as yet.
welcome to my world. it is refreshing to read about someone writing about this....
i just wanted to say hi and know you have someone in your corner who understands....
You need to look for your own particular program to follow; giving up in life is "inexcusable".
welcome to my world. it is refreshing to read about someone writing about this....
i just wanted to say hi and know you have someone in your corner who understands....
If you feel it is a waste of time then it is but the expectation you put on things is the biggest cause of disappointment. Everyone is a child and always wants things now and when you finally get things from others its always too little too late but really the only lesson to learn is that you get what you give so expecting without doing is a prescription for failure. The ol saying goes, fail to plan; plan to fail.
TBI sucks and its our problem not anyone else's so expecting people to understanding is a waste of an expectation and odds are everyone on this site has their own sad sob story to tell but the more you tell it the more real it becomes. Move past it and send a smile today, tomorrow, everyday and one day it will come back.
Mary, I encourage you to continue looking for support for your injury. Most states have websites and additional info there that may be of help to you. Another place you could look is with a local neuropsychologist who may be holding local meeting for TBI patients. Generally, this is a great website for blogging and encouragement. As life goes on, we are all busy with life and work and our own recoveries. Keep looking and keep discovering...with the astouding number of TBI's every year I believe you will find something. If there isn't any local TBI support groups in your area, maybe you want to consider starting one up yourself. Please feel free to contact me directly if you would like to chat. Keep up a good attitude and count our blessings we have been given.