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.
- Cerebral Palsy (onnurimedicine.me)