I woke up this morning at 5:20ish AM... I can't even tell you what I dreamt about because I can't remember. The only thing I know is upon opening my eyes I was greeted with the hellish reminder of my condition. The first thing I usually see is the rotating fan above me that appears to move in scenes every single time my eyes move. This symptom is called Akinetopsia - or better known as motion blindness. I know I have talked about this before, but I am talking about it again because, well, this is my blog and I'm pissed off!
Akinetopsia is very rare.... Visual Snow is very rare. There was a study that came out not too long ago called Palinopsia Revamped. The study talked about Palinopsia, which is usually explained as seeing trails behind moving objects such as a persons hands or a moving car. I have been experiencing this since 2009. I even remember seeing a trail behind my hand one time as a teenager, but my thought was "wow, that's pretty cool" and I never gave it another thought and never seen it again until 2009. This article touches on Akinetopsia and categorizes it as another form of Palinopsia. That was a relief for me to see because it meant, to me, that I wasn't dealing with something else along with my Visual Snow. It even mentions how Palinopsia often times goes along with Visual Snow.
The person/doctor/researcher who published this study was not anyone I have ever heard of, but they did a good job researching everything and putting it together. I just wish their was an explanation. I am so tired of the studies coming out telling everyone, "Hey, this rare condition exists", but not giving anyone a hint of how to fix it. I know what I have is rare.... Disability for some reason doesn't think that. To them I am a free loader who is capable of working. That is a whole other topic.....
Back to my original rant. I woke up at 5:20ish and well, ya know, it just sucks to have my first thought of the day to be about how I hate having to deal with this condition. It shouldn't be that way. Things like suicide and trekking on with my life, sucking it up and dealing with it... those thoughts shouldn't ever cross anyone's mind. How is it that we live in a world today where they've sent people to the moon, but yet I have to wake up and feel this way because I have been isolated in a condition that no one understands. Neurologists are so quick to dismiss you because you have something they don't want to deal with so they want you to be strong and deal with it. I AM NOT CAPABLE ANYMORE!!! I am TIRED of seeing all of these normal people hang out with their friends and family and laugh and share stories about their nights and the things they get to do when I am a prisoner of my own FU#@ING BODY AND MIND!!!! I am 32... I have wasted 7 years of my life with this condition. I have lost countless numbers of friends because I am not capable of having a normal life like them. I can't drive far, I can't drive at night, let alone see at night. I am a body that looks so freaking normal on the outside, but am being tortured every second that I am awake.
I was explaining to my church group last Wednesday about my condition after someone asked and a woman next to me asked me to come to a Mary Kay event with her at 6:00 PM the following Monday. After I explained it to the group the same woman looked at me and said, "Well you look normal!" This is the response that I get time and time again. It literally feels like this is punishment of some sort. Like I am living in actual HELL. I don't see Satan and it may not be hot, but believe me, it's Hell!
My one release..... driving... I can no longer do. The cars and their tires, they do the same as my ceiling fan. Bits and pieces of the scene.... it also makes me dizzy to see this. Yet... I appear normal, so therefore I am normal........
I have never kept my faith a secret.... It's hard... it's hard believing in an all loving and compassionate God, while I am allowed to go through this. I know there are so many more who are going through worse, and that is a reminder to me that we are in a temporary place and temporary body.... It just angers me. Why couldn't I be healthy.... and this condition be placed on someone less deserving like a criminal of some kind... a murderer. Why is this happening to me? Why does my son have to have a mother who can't do everything that someone else's mother can? Why does my husband have to have a wife like me who can't do the things he wants to do... and hell, all the things that I want to do? It just doesn't make sense to me. I just want it to make sense... I want the answers.
The study isn't happening at all right now.... we are waiting for it to happen, but it won't until we raise the $50,000.00 needed. Until then.... this is what I go through, and countless others. We wait.... life keeps passing us up... yet we wait.
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