This was the one media reference that hit straight to the heart of my point (although it references cancer) that people around me seem to reflect most often to how THEY are feeling and how my not feeling well affects THEM. Perhaps I am not being fair at this moment as I vent but this isn't something that will ever go away. I am not really going to get BETTER. My life has just changed, hell my status as a citizen in this country has changed. I am now a person with a DISABILITY. Sure, doctors believe that I have been living with this for likely 30 years untreated until my brain was so affected I could no longer ignore the signs. I followed all the rules of this 'American Dream' I worked hard in school, listened to my parents, didn't do drugs, went to college, worked hard at a starter job with benefits and when it came time to have kids I wound up taking time off to care for them and my grandmother who was suffering from alzheimers. Now, the girl who babysat every kid in the neighborhood, carried a camera with her sharing her view of the world with everyone without asking for anything in return and gave up her dream job to take care of her grandma because no one else was able to 'handle' her at the time when she wanted to stay in her home is on the other side of this dynamic now and as much as she attempts to work with those around her if she hears how hard her condition is on THEM one more time she may shout "ARE YOU KIDDING ME?" And before everyone gets offended those lovely supports know who they are and obviously this does not apply to you. For those who battle a disability every day and get hit with some of the most dumb comments ever I know you can relate to the whole, "but don't you realize how this affects me?!" Oh I am so sorry I didn't realize you were the one lying the the fetal position under the pile of blankets in the middle of the day in the dark cause you had another migraine after attending your sons soccer game, sorry I'll just jump up and help you out. I get it's a problem but give me a moment it will pass and we can move on. I am not in the middle of the family room screaming in pain (cause I could be it hurts so much) I am dealing while you are living and hopefully my kids are doing kid stuff like homework or playing legos and then we can all go back to life un-interrupted by health issues. I hate it more than you do TRUST ME.
Thursday, February 20, 2014
"Being around you has been so stressful for me"
This was the one media reference that hit straight to the heart of my point (although it references cancer) that people around me seem to reflect most often to how THEY are feeling and how my not feeling well affects THEM. Perhaps I am not being fair at this moment as I vent but this isn't something that will ever go away. I am not really going to get BETTER. My life has just changed, hell my status as a citizen in this country has changed. I am now a person with a DISABILITY. Sure, doctors believe that I have been living with this for likely 30 years untreated until my brain was so affected I could no longer ignore the signs. I followed all the rules of this 'American Dream' I worked hard in school, listened to my parents, didn't do drugs, went to college, worked hard at a starter job with benefits and when it came time to have kids I wound up taking time off to care for them and my grandmother who was suffering from alzheimers. Now, the girl who babysat every kid in the neighborhood, carried a camera with her sharing her view of the world with everyone without asking for anything in return and gave up her dream job to take care of her grandma because no one else was able to 'handle' her at the time when she wanted to stay in her home is on the other side of this dynamic now and as much as she attempts to work with those around her if she hears how hard her condition is on THEM one more time she may shout "ARE YOU KIDDING ME?" And before everyone gets offended those lovely supports know who they are and obviously this does not apply to you. For those who battle a disability every day and get hit with some of the most dumb comments ever I know you can relate to the whole, "but don't you realize how this affects me?!" Oh I am so sorry I didn't realize you were the one lying the the fetal position under the pile of blankets in the middle of the day in the dark cause you had another migraine after attending your sons soccer game, sorry I'll just jump up and help you out. I get it's a problem but give me a moment it will pass and we can move on. I am not in the middle of the family room screaming in pain (cause I could be it hurts so much) I am dealing while you are living and hopefully my kids are doing kid stuff like homework or playing legos and then we can all go back to life un-interrupted by health issues. I hate it more than you do TRUST ME.
Red Tape
What if someone or someones knew that you as a newborn were having seizures but hid this fact because for whatever reason perhaps they were worried about the adoption going through, or were bribed, maybe they figured someone else would eventually realize why you screamed so much as a baby? My parents were told I was given a medication because I cried a lot and the group foster home I was in had too many other kids to care for to worry about a fussy baby so they drugged me. What they used, was a anti-seizure medication for newborns, which would not be realized until decades later. When I call for my records that I paid for when in 1990's the Federal Government declared that all closed adoptions be allowed for a fee of course be allowed to contract a court appointed confidential intermediary who would obtain updated medical records (after science and open adoption advocates fought that those with little to no knowledge of their medical history would be at a greater risk to health issues like cancer, heart disease and the like) I am informed that my records have been stolen by my appointed intermediary who walked off the job with them. After my initial your KIDDING right?! I realize that this is exactly what those with open adoptions have access to, medical information. With every seizure a condition I inherited from my biological mother I take one step in the wrong direction as doctors guess when there is this woman who spent the majority of her life in a group home and gave me up for adoption has the cheat sheet of what's going on with my brain but there is a locked door in my way! The gatekeepers are the very people who employed people who drugged a newborn to shut her up, lied on adoption papers, stole confidential documents and with just these acts that I know about, have violated every commitment they promise.
For over thirty years my brain has suffered damage to the temperol and frontal lobes due to untreated seizures and while neurologists work on mastering a correct treatment to beat the various seizures,including PSE I have while working on the migraines and misophonia I will work on unlocking this closed door not just for myself but for others because if someone supposedly cared enough to bring me into this world shouldn't they care enough to keep me in it?
For over thirty years my brain has suffered damage to the temperol and frontal lobes due to untreated seizures and while neurologists work on mastering a correct treatment to beat the various seizures,including PSE I have while working on the migraines and misophonia I will work on unlocking this closed door not just for myself but for others because if someone supposedly cared enough to bring me into this world shouldn't they care enough to keep me in it?
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