Are you pushed away by family and friends--isolated--do people come to visit with you, call you, or invite you to community events? I write and speak on TBI and PTSD. This is isolating is not unique. People still today as in biblical times claim that anyone having a mental defect has a demon within. We do not. This is total ignorance.
I am working on a book now dealing with TBI, PTSD, ADHD, and maybe migraines but I need input and would like some answers on how your lives are and how do… read more
Its like if people cant see the physicality of a “disability” then they can’t accept it. I hate saying that migraines are a disability but they really are a medical disorder that people just don’t get. Its just a bad headaches and you need to stop being so melodramatic was something my father told me when I told him I had a migraine and couldn’t visit him. He was also verbally abusive when I was growing up so I rarely see him anyway.
Seizures are tough to deal with because so much keeps happening long after the seizure has ended. I do not suffer seizures but I have had students who have and my husband gets absentee seizures. My student who get them after having one will be out of school for a week because of all the on going symptoms he goes through after the seizure. Sometimes he even has a loss of skills and we have to go back a few months in the curriculum to help him relearn what he has lost. Along with confusion for many days. He has starts presenting behaviors like biting. For my husband he looses moments of time. He wont remember why he went into a room or if he went to the bathroom or if he helped our youngest get dressed. Most of the time its only ten to 15 minutes of time but before we had him stop driving there were times he wouldn’t remember driving home from work which was over half an hour! There are times he looses hours. Thankfully this doesn’t happen very often because it is disturbing to come home and find that he has cooked a whole meal and had no idea that he did. It doesn’t seem to effect his cognitive abilities in the effect that he does everything normally he just doesn’t remember doing it.
After my brother whacked me in the head and I was changed but so was most everybody else, especially with their attitude towards me. I wasn't my dad's little boy anymore. I wasn't allowed to become me. I was going to grow up to be like his favorite son. I didn't. I didn't smoke, drink, or do drugs and think that every woman was there for my pleasure. Teachers didn't like me because of my brother so it seemed like everybody was against me. I survived all this and served honorably in the Marines but my dad discredited what I did. He said the Marines changed me--I was weird now. And the word got around and I wasn't accepted anywhere. One comment can totally change who you are and that will follow you wherever you go. You carry it with you. You try not to but is always there. You do all the good things you can do and yet, there it is. We have so-called invisible wounds. No such thing--people can see your aura and if you have a troubled one they can see it. Many times I so wished that my brother killed me that day but I always think of all the people I have helped and will help again. No matter what they had done to me. I came to a point that what they said about me was their problem. I will not ear it for them--those days are over.
Bill, I agree! Sometimes I feel like I’m on that island in the ocean. It’s sad we feel that way, but I know deep down it’s not us. I just wish they knew how sad we are with all these illnesses we can’t do anything about it. My sister-in- law didn’t understand very much until her son started going through these emotions, too. He doesn’t have migraines but does have other similar issues. It’s pretty sad he’s going through all of things. I have 2 bipolar sons and one with just ADD. Two of my sons graduated from college and are very successful I. Their jobs and business. My bipolar son graduated from high school and worked for 20 years but has not worked for about 6 years because of foot surgeries. He doesn’t take meds because of his perceptions of them. His faith has carried him through. It’s so hard living with him because of his disabilities. We walk on egg shells in our own home. It makes us very sad he’s like that and can’t do anything about it. I taught Specific Learning Disabilities to 6th, 7th and 8th graders. I brought an exercise mat to my classroom and taught laying down. They would come to me for reading, etc. You do what you have to do to get by. No one understands how we have to do to just get by. I had a meltdown because of administrators we’re never behind us! I just left school one day and never went back my Psychiatrist said not to even engage talking with them. My husband took all my calls and told them I was never to going to come back. After their anger they finally stopped calling. I couldn’t even go by any school and couldn’t talk about it. I have a close friend who went to my meetings for retirement. She helped me through the darkness time! My husband finally understood what I go through. We’re both retired but will have our son living with us forever. Sorry to go on and on but I felt you needed to hear more of story.
I have TBI, PTSD, migraines, Myalgic Encephalomyelitis, sound and light intolerances, peripheral neuropathy and other chronic diseases. I was once a successful Oncology Bone Marrow Transplant and Oncology Research Nurse and had many friends and family members who loved and hang around me. Now I am isolated, rejected by most people and it is a very hard life.
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