WearyWanderer
Student
- Nov 3, 2019
- 127
Am writing this post to hopefully raise more awareness about birth defects and for medical people / coroners to read after my eventual, but unpredictable death.
I was too oblivious to my own body most of my life to adequately notice my differences which I partly blame on sensory issues. By what can only be described as a miracle of sorts, had a somewhat functional body first 21 years of life. But it was both a blessing and a curse because I didn't notice my deformity until it was too late. My whole pelvis fused incorrectly as part of some severe neural tube defect related to my spina bifida occulta. I think it is a closed defect but not 100 % sure. I am certain that parts of my stomach, pelvis, and spine didn't form properly musculoskeletally in the womb and physically my body feels like an underdeveloped embryo. More specifically, the bones of my pelvis twist and wrap through the pelvis like a spiral or figure eight. The deformity is twisted in such a way that it appears to be a twisted pelvis with uneven hips. But, this is an optical illusion. While both ilia and hips are twisted, the cause is developmental deformity, not standard scoliosis.
I won't say that I am the only case in the world, but spinal defects are known as "snowflake diseases" because no two cases are exactly the same. And I do somewhat relate to the children in news stories who have birth defects so rare they are the only known living case because I honestly don't know how a body can still be alive like this.
I didn't fully realize it before, but I don't have a front, back, left and right side of my torso / lower back because the way that it formed is more like a swirling mass of muscle and bone. It's almost impossible to describe and even more difficult for people, including my family and doctors, to see. The sensation is like a pelvis twisted in on and around itself. My bowels and rectum are both sealed shut in places but shockingly not sealed enough to kill me or at least not yet. My pelvis is too small for my skeleton and somehow the left side of my pelvis is closer to the middle of my body. My legs feel like growths attached by strings hanging off of my body but they're also smashed and twisted within the deformed pelvis which pinches and compresses all pelvic muscles so my own body is smashing me and twisting my organs. I was shocked to discover that my twin sister's relatively normal lower back and SI joints were smooth and flat because my ow SI joints are like twisted lumps which stick out from my lower back at odd angles.
What I used to think were frequent stomachaches, some type of IBS, and indigestion I know realize were partly pains caused by abnormally developed anatomy because both sides of my stomach are twisted and smashed but also pulled since the pelvis is too small to reach all the way from the back to the front of the body, so it converges in an odd middle and it's like my legs are twisted around themselves at both the hips and the ilium bones. Astonishingly and devastatingly, none of these unfathomable abnormalities show on tests, meaning no doctor will believe me when I tell them it feels like a birth defect and no one in my family will agree to help me go to Pegasos.
I'm not really sure why I'm writing this but I guess it was because I had hoped that my cadaver could be used for research purposes to study spinal defects in identical twins. Although my method may make that impossible, I left a request to be donated to a willed body program in my note. I'm also now realizing that this site maybe wouldn't be the best for people to find after my death because I don't want it to get shut down. It's the only way I was able to find out about Pegasos and assisted dying organization procedures without having to pay.
So I guess this is now more of a pointless rambling but I am eternally grateful for Sanctioned Suicide for allowing me to research and I don't know what I'd do of it didn't exist. This site has become the one thing in my life which gives me hope of an escape from an unbearable, unlivable, torturous life. I love you all and enjoyed meeting the people here. <3 Wish I was still well enough to interact with you all.
I was too oblivious to my own body most of my life to adequately notice my differences which I partly blame on sensory issues. By what can only be described as a miracle of sorts, had a somewhat functional body first 21 years of life. But it was both a blessing and a curse because I didn't notice my deformity until it was too late. My whole pelvis fused incorrectly as part of some severe neural tube defect related to my spina bifida occulta. I think it is a closed defect but not 100 % sure. I am certain that parts of my stomach, pelvis, and spine didn't form properly musculoskeletally in the womb and physically my body feels like an underdeveloped embryo. More specifically, the bones of my pelvis twist and wrap through the pelvis like a spiral or figure eight. The deformity is twisted in such a way that it appears to be a twisted pelvis with uneven hips. But, this is an optical illusion. While both ilia and hips are twisted, the cause is developmental deformity, not standard scoliosis.
I won't say that I am the only case in the world, but spinal defects are known as "snowflake diseases" because no two cases are exactly the same. And I do somewhat relate to the children in news stories who have birth defects so rare they are the only known living case because I honestly don't know how a body can still be alive like this.
I didn't fully realize it before, but I don't have a front, back, left and right side of my torso / lower back because the way that it formed is more like a swirling mass of muscle and bone. It's almost impossible to describe and even more difficult for people, including my family and doctors, to see. The sensation is like a pelvis twisted in on and around itself. My bowels and rectum are both sealed shut in places but shockingly not sealed enough to kill me or at least not yet. My pelvis is too small for my skeleton and somehow the left side of my pelvis is closer to the middle of my body. My legs feel like growths attached by strings hanging off of my body but they're also smashed and twisted within the deformed pelvis which pinches and compresses all pelvic muscles so my own body is smashing me and twisting my organs. I was shocked to discover that my twin sister's relatively normal lower back and SI joints were smooth and flat because my ow SI joints are like twisted lumps which stick out from my lower back at odd angles.
What I used to think were frequent stomachaches, some type of IBS, and indigestion I know realize were partly pains caused by abnormally developed anatomy because both sides of my stomach are twisted and smashed but also pulled since the pelvis is too small to reach all the way from the back to the front of the body, so it converges in an odd middle and it's like my legs are twisted around themselves at both the hips and the ilium bones. Astonishingly and devastatingly, none of these unfathomable abnormalities show on tests, meaning no doctor will believe me when I tell them it feels like a birth defect and no one in my family will agree to help me go to Pegasos.
I'm not really sure why I'm writing this but I guess it was because I had hoped that my cadaver could be used for research purposes to study spinal defects in identical twins. Although my method may make that impossible, I left a request to be donated to a willed body program in my note. I'm also now realizing that this site maybe wouldn't be the best for people to find after my death because I don't want it to get shut down. It's the only way I was able to find out about Pegasos and assisted dying organization procedures without having to pay.
So I guess this is now more of a pointless rambling but I am eternally grateful for Sanctioned Suicide for allowing me to research and I don't know what I'd do of it didn't exist. This site has become the one thing in my life which gives me hope of an escape from an unbearable, unlivable, torturous life. I love you all and enjoyed meeting the people here. <3 Wish I was still well enough to interact with you all.
