Even after 21 years, I still find plans difficult to make and goals difficult to reach, but it is possible. Daily life remains unpredictable. There are ongoing daily detours, but I challenge myself to find another path. Often this path is not one I would choose, but it’s the one I must take. I follow these paths with my heart, soul, mind and spirit. I love people but I have distanced myself from many who were users and abusers among other reasons.
I still love people. I help in whatever way I can. I help by simply watching an infant, holding a hand, being kind to strangers because that is simply me. We have even extended help to several others for the past 12 years to provide a loving home with us and we would never change that.
Those who have lived with us, have found an extraordinary peaceful home with only an occasional outburst and maybe a few catastrophic reactions. Albeit, we are dealing with traumatic brain injury and nearly 40 years of cerebral palsy (also considered brain injury). The home situation has always been modified to accommodate our daughter living with mild cerebral palsy.
To an active adult it can appear that we’re just being lazy, but if you deal with brain injury you know differently and understand. From the perspective of the elderly, it’s perfect! It’s a boring environment if you are the social or party type you won’t like it! I was social at one time, but I suddenly learned to like quiet and boring! It was survival, and the only way to survive.
Modifying the environment is extremely important to keep focus. External stimuli constantly needs to be controlled. I never realized how significant the environmental stimuli is to the level of functioning until this happened to me in 1991. I made changes in our home nearly our entire married life for our daughter and our peace of mind dealing with her, but I never really experienced it personally until 1991. What a shock and change that was for me!
After my friend’s brain injury (1999) she also experienced how life changed forever. She helped me make adjustments 10 years following my injury. It was after her injury that she truly understood me. Did she? She taped attractive computer signs on the doors and mirrors for my reminders and so certain people would get the message. I saw her struggling with stressors within my biological family and she wasn’t doing well witnessing some of the crap. She was also vulnerable and I would not hurt her. It was better for me to end our relationship and decrease her stress.
It was obvious I was being used by people. I don’t think they did get the message from my signs posted around the doors and mirrors, but it’s a suggestion that helped with reminders for me. When I come across the pictures of these signs I will put them in another post so others can use this idea.
I have given so much of myself to many other people who also have crushed and broken my heart. It has literally nearly cost my life because of the interference in my healthcare in 2007 & 2008. Things became extremely sick and vindictive. I put this out in this post to caution others dealing with brain injury and brain dysfunction since they are so vulnerable.
People need to realize even with HIPAA laws, confidential information is leaked. I found several leaks in my situation, and they put the red flags up forever! When there are complaints to healthcare providers they are always documented. I have been informed of the details by a few healthcare professionals to protect myself and family.
Documentation includes the date, time, the complaint, the person making the complaint whether the complaint is true or false among other specific things or involvements. Everything is documented. Sometimes it’s in the charts, and other times it goes to the legal department. Slander, liable, and deformation of character were obvious. People I thought I could trust, were NOT trustworthy. Others got involved because of their own vulnerabilities.
All documentation in our healthcare records are legal. If legal action would be pursued this documentation would hold up in the court of law.
I sought treatment for an acute onset of symptoms that I struggled to recover. My symptoms were dismissed, but this time because of involvement to deliberately cause emotional harm by a Narcissist. This person and others influenced this healthcare professional to believing false information. They thrive on this! It’s simply criminal behavior. I wish this were just a story, but this is just the beginning to reveal what is happening within our healthcare system.
According to ultrasound of carotids and blood work there was a carotid bleed. It also went untreated. I don’t know if anything could have been done, but at the time I was clueless. I lived out-of-state while receiving treatment and this year I have permanently moved where healthcare is valued for myself and husband. We are receiving remarkable care and my healthcare journey is well documented.
Nothing was done to help because contact was made to a neurologist by a Narcissist and created significant interference in 2007-2008 with my healthcare. The carotid bleed was a significant setback and another struggle to overcome independently. I refuse to die at the hands of anyone, but God. I was fortunate, because I lived. Or maybe those involved in false accusations were fortunate because I lived? Otherwise, they would have been responsible.
Anyway, I think I was fortunate so I could help others through this type of situation. I just never thought it would be a repeated problem but it was. I’ve shed many tears but I’ve kept my strength. Journaling has helped put the pieces to the puzzle together. Slow thinking is a problem, because others take advantage of situations.
Even though thought processes are slow, one’s perceptions are not deceiving. Many are treated as though they are “stupid” and “oblivious”. Comments are made as though we can’t hear or understand. Surprise!…we hear it all, but just can’t process the information quickly enough to act upon it. Sometimes it takes minutes, hours, days, weeks or years to process but we eventually get it! It totally depends on the healing brain and it’s connections.
I would never interfere with anyone’s healthcare, but it happens. I would like to believe it doesn’t happen, but I’m here to say it does. This experience will not stop me from loving and helping people.
Trust is at the top of my list. When I lose trust now, it’s gone forever. In the past, I would try to mend the trust issues. I forgive that I cannot change the situation. I’ve come to realize “Trust” is earned, and when violated repeatedly it’s not my problem. My problem is to remove myself from those who I thought I could “trust” and “love” and move on in life with trusting relationships. I’ve done just that!
In my case, I was struggling to live for years without the proper diagnosis, treatment or support. A proper diagnosis would have easily prevented years of pain, suffering, anguish and so on…but it was the cover-up that was more important to healthcare professionals and not the lives of patients and families. Mistakes in healthcare need disclosed. It’s not about litigation, it’s about HEALTH! Physical, emotional, social and spiritual HEALTH! HEALTH! HEALTH! Details will be revealed in the next couple posts to clarify what has happened and plans for the future.
Related articles
- Cerebral Palsy (onnurimedicine.me)
braininjuryselfrehabilitation 
buckwheatsrisk
September 24, 2012 at 8:32 pm
Amen to that!
heidirmoore
September 25, 2012 at 12:05 am
Thank you so much for having the courage to write this, my friend. It’s so hard to have gone through all this, I know. I pass along a big hug to you in fellowship. Sorry!
There were so many things I wished to know more about, but I am not sure you would like to write more about any of it, so I hope you will know and respect your own limits on dealing with the subject matter. But I felt like this could be expanded into several posts.
For example, the part about hipaa and confidentiality felt like it was critical–and of real importance to everyone–but I wasn’t real clear about how a leak of confidential information could have led to a carotid artery bleed.
Anyway, there is so much good material here, and I do hope you will be able to say more on several of the topics here because you have been so courageous to bring up some of the things that most people are afraid to say.
Best,
Heidi
brain injury self rehabilitation (BISR)
September 25, 2012 at 1:06 am
I appreciate your input. I tried to go back and edit this post to help clarify the “carotid bleed” situation briefly. I also changed this to Part 1 of 4, because I am trying to make people aware of what does happen when criminal/sick behavior interfere with healthcare. It will be detailed in the next couple posts. I can also expand on the violation of HIPAA and confidentially issues.(Help me to remember this) I added an extra sentence at the end as well. Let me know if this is helpful.
I am also aware that some who were involved may be reading this. They will NOT control my life in any way. I am giving facts that can be supported by documentation and witnesses (including healthcare professionals).
Take care and stay safe, Edie
wendy
September 25, 2012 at 2:28 am
I know you write for those with traumatic brain injuries, and although I don’t have one, I get so much from your blog. As you know, I have a multitude of things going on with me, including Idiopathic Intercranial Hypertension….and this past few weeks it has reared it’s ugly head. I don’t think I would have had the mind set to understand much….good thing I didn’t have to sign some legal document. The Cerebrospinal Fluid Pressure is better, but I’m still having a time getting it straight.
And I feel like my brain is in this big fog, and I’m angry a lot. (I don’t like that at all!)
But enough about that.
What I wanted to comment on is the friend situation. I too have had to distance myself from people who caused me pain. Or those who would write a note on FB….hope you are doing better. Hey, you live down the street, drop by and see! And they know I can take visitors. No, I don’t have the energy to run down my friends and beg them to still like me now that I’m different.
And my family!! Oh how I wish I could just walk away. Just disappear and not let them know where I went. They really do drive me insane. I think about our conversations and i keep feeling like I’m trying to put a puzzle together so I can understand it, but the pieces don’t fit together. Something is off.
Thank you for being so open and honest. I’m sorry I haven’t been around much…you know how things get.
I’m happy to see you are posting, and hope you are feeling much, much better.
wendy
brain injury self rehabilitation (BISR)
September 25, 2012 at 2:51 pm
I’m sorry to hear you’ve had an extremely challenging few weeks. That’s enough to create anger! Being in a “brain fog” is not easy. One simply can’t think with this condition attributed by your intracranial hypertension.
Sometimes the pieces of the puzzle do not fit! Just keep notes, and eventually it will fall in place. If people are not helping you with good emotional, physical, social and spiritual health better not to associate. Don’t drive yourself crazy trying to put the puzzle together. It can take years, unless it’s obvious. It’s a good thing you don’t think or act like most of them. That’s why these behaviors are so hard to identify or understand. There is NO understanding psychopathic or sociopathic behaviors, these are criminal behaviors not psychological problems. You are right … following your intuition “something is off” and it’s not you! Keep yourself safe and protected. Edie
Kathy
September 25, 2012 at 4:44 pm
Awesome post! I want to send you encouragement and clarity of thought as you continue with this post. I believe that if you are in the medical field the comment regarding HIPAA and confidentiality are very clear to one. We’ve been “dupped” into believing that piece of paper with the HIPAA information is the end-all to private medical records, conversations, hearsays,etc., etc.
As in all situations of the law, the law is only enforceable to the extent that those involved are honest. Did you ever really read what you are signing?? Just recently I was asked to sign one that stated that the medical records would only be available to law enforcement, medical facilities, other medical professionals as needed. That was not all that was included but just a sample. Hmmm, seems like too many people would have access to my personal information.
brain injury self rehabilitation (BISR)
September 25, 2012 at 5:33 pm
Honesty? Yes, honesty is valued but doesn’t happen as expected. Maybe our expectations are too high, but I’m not lowering my expectations either!
Xaka
September 27, 2012 at 5:24 pm
I just wanted to say to you: Thank you. Thank you for sharing your story and yourself with us through this highly informative blog. Whether or not someone can relate to your experiences, I think the perspective you share is needed. From one human being to another, thanks. 🙂
brain injury self rehabilitation (BISR)
September 27, 2012 at 5:59 pm
I appreciate your kind words. Writing is an exciting experience, and I hope it provides education and insight. Take care and stay safe.
Laurie FourPaws
September 27, 2012 at 10:18 pm
Hey I’ve been so pre occupied with my fathers Dementia and all the crazy things he is doing these days. It is scary because we are so much alike and our TBI’s are clashing. He no longer understands my sleeping so much and dysfunctional brain swimming through pond sludge days. I on the other hand am having difficulty comprehending my very different father so far from what he was.
It is so hard to watch him make such bad decisions for himself. It has become nearly impossible to reason with him and all we seem to do is revisit issue after revolving issue. The stress is unbearable for me and I am the only child. I made the most difficult decision to step back for now. I wish I could control my own emotions better so it would not affect me so much. The truth it scares me to death, that I will be like he is at a much younger age.
Oh Yes and one of my tbi x friends who I was so very generous to and helped so very much became a user of me instead of her addiction. Guess who is living for free at my dads house for free with her cats who don’t use the box and fleas. I guess I wont be visiting my dad any time soon. since I come up with 6 well cared for flee free dogs and cats. Wow that felt good.
Thank you for sharing your story it helps me to let mine out too. Your words “suddenly learned to like quiet and boring! It was survival, and the only way to survive.” Yes, I am so there too. and relate so much to so many issues you bring up including the energy stealers and those who leave you behind because you are not the person you once were. Yes and the Human Spirit still rises above if we are positive deep within.
brain injury self rehabilitation (BISR)
September 28, 2012 at 11:15 pm
I’m sorry to hear about your dad’s decline. You have a lot to deal with. Being an only child would also make this a difficult and lonely journey. I can see how his situation could be frightening to you. Think positive! Moving away from situations because it clashes with your own is the right thing to do. You need to take care of yourself.
You’ve been dealing with an injury for some time, and you’ll be an expert at compensating throughout the aging process because you are intelligent, an educator, and know the importance of brain health and brain exercise… and most importantly you’ve tapped into every area possible to compensate.
It’s my experience that my memory is far better then most others in my age range. I attribute that to compensating for so many years. As we age it’s difficult to learn new techniques. Our brains already have these techniques installed…it’s like pre-installed software! That will prevent decline! BELIEVE!
Don’t look at what you fear, look at what you see! Have you noticed others around you forgetting things you don’t? Think about how good we are looking these days!
Take care and stay safe, Edie