I have given a lot of thought about what I was going to put in my blog today. Yes, I got do the usual and bore the hell out of you with the mundane happenings in my life, but I have decided to do something a little more important.
I have been a member of Suicide Girls for over a year now. I am actually a hopeful, but have yet to shoot a set for member review. Part of the reason for that will be explained in this blog. This blog is very important to me because I have made many friends complete with regular members as well as several very kind, yet beautiful Suicide Girls over the past year. In fact, I have gotten to know a lot of you on a really personal level and due to this something has been brought something to my attention. It appears as if, I know all about you, however, not all about who I am is apparent to some of you. No, do not fret or run away. I am not actually a guy or some child molester. *giggles* It is something that I deal with on a daily basis, but does not change who I am.
For all of you that are unaware, I was born disabled. Why did I not post this until now? Well, I did not think it should define me and sadly as I have discussed with a couple of you guys on here, there is often a stigma that comes with the word, "disability." So I wanted to take the opportunity to educate the rest of world on what I have to live everyday. Not for a pity party, because I love being the way I am, but to ensure that an understanding is made so that others are accepted.
Back in October 1981, my 16 year old mother went into labor four months early. She was hemorrhaging pretty badly and once she arrived at the hospital, her family was informed that both of us were more than likely not going to make it through this. My grandparents and father prepared for the worse. Hours later however, at 6:02 am I was born. I came out telling the world to, "kiss my ass," basically because I was born breech, or feet first. More accurately, I was still in the fetal position. I had not even begun to turn in the womb to make my journey into the world.
Once I was born, things got progressively worse. I weighed barely two pounds. Both of my lungs collapsed. I was not breathing on my own. They had to put in chest tubes to give me oxygen in addition to putting me a special incubator with lights and even more oxygen. I was jaundice too, apparently. So it seems as if I am all in the clear, right? Nope! When the doctors decided to put the chest tubes in they noticed that I did not have enough skin to close the wound. They basically worked with what they had. Due to this I now how a huge scar and old under my left armpit near my breast. I would noticed this much later as my body began to grow.
I spent two months in the ICU. I was born so early I had no fingernails, no eyelashes, and I had a heart murmur. I l also lost down to only one pound. It was looking as if the odds were against me. In fact, it was 1981 and technology was not all that great. Realistically, I was in trouble and my life was hanging in the balance.
I died five times over those two months and my mother never gave up on me. I started to improve and eventually on Christmas Day 1981, I was able to come home. However, I will still attached to breathing machines and a heart monitor. I was still not out of the woods, but at least it appeared I had a chance. A chance of what though was still uncertain.
As the weeks went by my grandfather noticed I wasn't focusing on objects or people. I also was not following things with my eyes. He questioned my mother about it and they decided to see if they got make me blink. Both of them literally touched my eyeballs and I did not flinch. It was if I did not even know it was occurring. Naturally, this frightened my mother, so she she immediately made an appointment with my pediatrician. Little did she know this would lead to multiple doctors and two years passing before we knew really what was going on with me.
An eye doctor established that I was blind. The blindness was due to bleeding on my brain caused by the premature birth. The blood was collecting behind my retinas and was therefore prohibiting me from seeing. Since there was bleeding on the brain, the ophthalmologist suggested that my mother take me to a neurologist to see if there was any other damage to my brain. The neurologist simply said I was autistic. I would never talk, walk, and had a great probability of being mentally delayed, perhaps even considered mentally "retarded." (Sorry, I hate that word among many others I will share with you later).
So soon my mother gave birth to my sister. It was now 1982. I was over a year old. I was not sitting up. I was not rolling over. In fact, I was just laying there basically. However, things were about to change. Within a few months we would realize that miraculously I could see. The blood had drained without any intervention. Before I was two I was speaking complete sentences. However, I was still unable to sit up on my own. I wasn't trying to crawl or walk and had a very unusual floppy appearance.
My mother was only 18 and was only going on what the doctors had told her, but at this point she realized that I just might not be autistic. I was doing things they never expected me to do. I was beating the odds that had been against me all along. So with much hope, she decided to get a second opinion. This time she decided to go to an orthopedic specialist. She knew the answer had to be hidden in my floppiness.
So at the age of 2, the greatest doctor in the world, diagnosed me with Cerebral Palsy and birth defect that is caused by brain damage. The damage usually occurs around the areas of the Cerebrum and the Cerebellum. More so, in most cases the cerebellum is most affected, which is at the base of the brain stem. Damage in this area usually impairs motor function, coordination, balance, and movement. All of which were areas in which I was experiencing deficits. So the doctor decided to run a few more tests.
Cerebral Palsy comes in many types and can affect each individual differently. Rather than bore you with a bunch of boring medical jargon, I will stick to the form I suffer from and explain it to you in detail. After all the testing was complete, they finally had a diagnosis. I had the Spastic Diplegia form the disorder.
Medically, this is what it boils down to: ( I will explain later how I am directly affected
)
Spastic diplegia is a form of Cerebral Palsy, in which the lower extremities are affected, with little to no upper-body spasticity. This is the most common form. For you math lovers out there, 70-80% of Cerebral Palsy suffers have this form. Most people with spastic diplegia are fully ambulatory, but are "tight" and have a scissors gait (a scissor gait basically means are legs like to cross over each other sometimes. In addition, these individuals also have flexed knees and hips to varying degrees. In my case, I have a little knee bend when I walk and my hips are rotated inward and locked. Not much mobility there. Ok, on to more medical stuff. Also, these individuals may experience moderate to severe adduction (stemming from tight adductor muscles and comparatively weak abductor muscles). What is an adductor muscle you ask? Well, it is basically your groin area around the sides of your legs. Some people have difficulty spreading their legs (Sorry, I am going to giggle because this sounds so wrong), while others are unable to keep their legs together. Monitoring of walking techniques and development are started early in life and is continued on a semi-regular basis. Often assistive devices are often provided like walkers, crutches or canes. Braces such as any ankle-foot orthotics may also be utilized and usually go on both legs rather than just one. Suffers of the birth defect many also be nearsighted. The intelligence of a person with spastic diplegia is unaffected by the condition. Over time, the effects of the spasticity sometimes produce hip problems and dislocations. In three-quarters of spastic diplegics, also strabismus (crossed eyes) can be present as well.
Now that the condition is understood, I will better explain how I am affected. Primarily, I have the typical "scissor" gait, but I happen to refer to my walking style as more of a "sexy" strut. If you see me walk, then it just looks like my legs are trying to cross over each other in like a crossing fashion. I do suffer from severe spastic muscles and as a result have to live on muscle relaxers to maintain mobility. The tightness of the muscles can also lead to spasms. Realistically, I have them all the time. Some of them I feel and can noticed and are quite painful, while others I do not even realize are occurring and I do not even notice unless someone points it out to me. Since some of them can be quite painful, I rely on a Morphine patch and other medications for pain control. Sadly, at 29, I am addicted to pain medications. I walk with crutches and sometimes use a wheelchair when a lot of walking is involved. I am also supposed to wear braces on both feet for ankle support, but I am stubborn and have not wore them since September. However, I was a good girl today
and made an appointment to get my braces adjusted and to get some new shoes to fit them. As for my hips they are affected. They are rotated inward and I limited flexibility with them. My adductor muscles were loosened as a child so I have no problems with the keeping legs together or spreading department. (Once again that sounds so wrong). I am also near-sighted and wear glasses and my intelligence was completely unaffected.
So that is pretty much the medical part of how I am affected. As far as the rest of my life I am just like everyone else. I refuse to use the word "normal." It is not in my vocabulary and I do not think the concept of it exist. I also hate the word "crippled." You can call me peg-legged, gimp, disabled, whatever just not that. I often make fun of myself so such expressions do not offend me, but the "C" word makes me growl!
I had a fairly normal childhood. Although most of it was spent in a hospital. I graduated high school 11th out of a class of 400. I later graduate college and earned a Bachelor's in Psychology and an Associates in English Literature. Currently, I am pursuing a Masters in Adult Education. It is my ultimate goal to become a college professor. Being disabled has not affected my relationships. I dated a guy for over 18 years and was engaged until last April. Now I am with a new guy and we have been together almost a year. It will be a year in June. He is also a member of the site and actually was who introduced me to it. He is known in the community as Pezmaster. He is awesome. A little geeky and loves video games, but really one of the kindest people you could ever meet. I fell in love with him the night he texted me saying, "You will never be disabled to me!"
Not to mention, he was the first guy not to immediately ask if I could feel my legs when we met. Of course I can feel my legs. He humorously asked if I could drive. Sadly, I can not. It is possible with an adaptive car, but I am way too nervous to drive, so I have made no effort. I am fine with Pezmaster hauling my ass around. I do not want to get too personal, but I am sure some of you are curious. My disability does not hinder our sex life. We have to make a few adjustments here and there, but we get it on just like the rest of you! We are currently living together with his four year old little boy who is anxious to help at a moments request. He and I are looking for our own place at the moment because we currently live with his parents. Money is tight so some saving has to be done. In time, though I know our life will be everything I have ever wanted. Nothing is perfect, but right now my life is as close as it could be to it.
I will post a picture of me in my wheelchair. For some reason, I never take pictures with my orthotic equipment. I am not ashamed in the least. They just do not need to be there. My face is all that needs to be seen, but since I posted this blog I thought I would show one. I would include one with my crutches which I use most often, but the last picture taken with me and my crutches was taken when I was six!
ME AND MY WHEELS (APRIL 2010)
I feel that the reason I was born is because I have a specific purpose to serve on this Earth. I have yet to figure out what this purpose is, but even if it doesn't come before my death, I am ready for that too! I am an organ donor and I have also documented that I want my body donated to science. That way through my death, doctors can learn from the condition and someday conditions such as these may not exist anymore. Who knows, maybe I might help find a cure for something worse like cancer! Only I can hope! Until then, I try to educate people on disabilities as well as avidly donating to charities that help research such conditions. Some of my favorite charities include, "The March of Dimes," anything for autism research, Stand Up 2 Cancer, and the annual MDA telethon hosted by Jerry Lewis!
I would like to include some valuable links for all of you to enjoy:
THE MARCH OF DIMES OFFICIAL WEBSITE
THE UNITED CEREBRAL PALSY FOUNDATION
AUTISM RESEARCH INSTITUTE
STAND UP 2 CANCER
I promise the next blog will not be long and resemble a college lecture. I just thought it was time to be fair and honest and share all of me with you guys, just as you have in return. I hope that it will not change your perception of me, but if it does then you aren't worth knowing. (Not trying to sound rude, but acceptance is the key!)
I have been a member of Suicide Girls for over a year now. I am actually a hopeful, but have yet to shoot a set for member review. Part of the reason for that will be explained in this blog. This blog is very important to me because I have made many friends complete with regular members as well as several very kind, yet beautiful Suicide Girls over the past year. In fact, I have gotten to know a lot of you on a really personal level and due to this something has been brought something to my attention. It appears as if, I know all about you, however, not all about who I am is apparent to some of you. No, do not fret or run away. I am not actually a guy or some child molester. *giggles* It is something that I deal with on a daily basis, but does not change who I am.
For all of you that are unaware, I was born disabled. Why did I not post this until now? Well, I did not think it should define me and sadly as I have discussed with a couple of you guys on here, there is often a stigma that comes with the word, "disability." So I wanted to take the opportunity to educate the rest of world on what I have to live everyday. Not for a pity party, because I love being the way I am, but to ensure that an understanding is made so that others are accepted.
Back in October 1981, my 16 year old mother went into labor four months early. She was hemorrhaging pretty badly and once she arrived at the hospital, her family was informed that both of us were more than likely not going to make it through this. My grandparents and father prepared for the worse. Hours later however, at 6:02 am I was born. I came out telling the world to, "kiss my ass," basically because I was born breech, or feet first. More accurately, I was still in the fetal position. I had not even begun to turn in the womb to make my journey into the world.
Once I was born, things got progressively worse. I weighed barely two pounds. Both of my lungs collapsed. I was not breathing on my own. They had to put in chest tubes to give me oxygen in addition to putting me a special incubator with lights and even more oxygen. I was jaundice too, apparently. So it seems as if I am all in the clear, right? Nope! When the doctors decided to put the chest tubes in they noticed that I did not have enough skin to close the wound. They basically worked with what they had. Due to this I now how a huge scar and old under my left armpit near my breast. I would noticed this much later as my body began to grow.
I spent two months in the ICU. I was born so early I had no fingernails, no eyelashes, and I had a heart murmur. I l also lost down to only one pound. It was looking as if the odds were against me. In fact, it was 1981 and technology was not all that great. Realistically, I was in trouble and my life was hanging in the balance.
I died five times over those two months and my mother never gave up on me. I started to improve and eventually on Christmas Day 1981, I was able to come home. However, I will still attached to breathing machines and a heart monitor. I was still not out of the woods, but at least it appeared I had a chance. A chance of what though was still uncertain.
As the weeks went by my grandfather noticed I wasn't focusing on objects or people. I also was not following things with my eyes. He questioned my mother about it and they decided to see if they got make me blink. Both of them literally touched my eyeballs and I did not flinch. It was if I did not even know it was occurring. Naturally, this frightened my mother, so she she immediately made an appointment with my pediatrician. Little did she know this would lead to multiple doctors and two years passing before we knew really what was going on with me.
An eye doctor established that I was blind. The blindness was due to bleeding on my brain caused by the premature birth. The blood was collecting behind my retinas and was therefore prohibiting me from seeing. Since there was bleeding on the brain, the ophthalmologist suggested that my mother take me to a neurologist to see if there was any other damage to my brain. The neurologist simply said I was autistic. I would never talk, walk, and had a great probability of being mentally delayed, perhaps even considered mentally "retarded." (Sorry, I hate that word among many others I will share with you later).
So soon my mother gave birth to my sister. It was now 1982. I was over a year old. I was not sitting up. I was not rolling over. In fact, I was just laying there basically. However, things were about to change. Within a few months we would realize that miraculously I could see. The blood had drained without any intervention. Before I was two I was speaking complete sentences. However, I was still unable to sit up on my own. I wasn't trying to crawl or walk and had a very unusual floppy appearance.
My mother was only 18 and was only going on what the doctors had told her, but at this point she realized that I just might not be autistic. I was doing things they never expected me to do. I was beating the odds that had been against me all along. So with much hope, she decided to get a second opinion. This time she decided to go to an orthopedic specialist. She knew the answer had to be hidden in my floppiness.
So at the age of 2, the greatest doctor in the world, diagnosed me with Cerebral Palsy and birth defect that is caused by brain damage. The damage usually occurs around the areas of the Cerebrum and the Cerebellum. More so, in most cases the cerebellum is most affected, which is at the base of the brain stem. Damage in this area usually impairs motor function, coordination, balance, and movement. All of which were areas in which I was experiencing deficits. So the doctor decided to run a few more tests.
Cerebral Palsy comes in many types and can affect each individual differently. Rather than bore you with a bunch of boring medical jargon, I will stick to the form I suffer from and explain it to you in detail. After all the testing was complete, they finally had a diagnosis. I had the Spastic Diplegia form the disorder.
Medically, this is what it boils down to: ( I will explain later how I am directly affected
)
Spastic diplegia is a form of Cerebral Palsy, in which the lower extremities are affected, with little to no upper-body spasticity. This is the most common form. For you math lovers out there, 70-80% of Cerebral Palsy suffers have this form. Most people with spastic diplegia are fully ambulatory, but are "tight" and have a scissors gait (a scissor gait basically means are legs like to cross over each other sometimes. In addition, these individuals also have flexed knees and hips to varying degrees. In my case, I have a little knee bend when I walk and my hips are rotated inward and locked. Not much mobility there. Ok, on to more medical stuff. Also, these individuals may experience moderate to severe adduction (stemming from tight adductor muscles and comparatively weak abductor muscles). What is an adductor muscle you ask? Well, it is basically your groin area around the sides of your legs. Some people have difficulty spreading their legs (Sorry, I am going to giggle because this sounds so wrong), while others are unable to keep their legs together. Monitoring of walking techniques and development are started early in life and is continued on a semi-regular basis. Often assistive devices are often provided like walkers, crutches or canes. Braces such as any ankle-foot orthotics may also be utilized and usually go on both legs rather than just one. Suffers of the birth defect many also be nearsighted. The intelligence of a person with spastic diplegia is unaffected by the condition. Over time, the effects of the spasticity sometimes produce hip problems and dislocations. In three-quarters of spastic diplegics, also strabismus (crossed eyes) can be present as well.
Now that the condition is understood, I will better explain how I am affected. Primarily, I have the typical "scissor" gait, but I happen to refer to my walking style as more of a "sexy" strut. If you see me walk, then it just looks like my legs are trying to cross over each other in like a crossing fashion. I do suffer from severe spastic muscles and as a result have to live on muscle relaxers to maintain mobility. The tightness of the muscles can also lead to spasms. Realistically, I have them all the time. Some of them I feel and can noticed and are quite painful, while others I do not even realize are occurring and I do not even notice unless someone points it out to me. Since some of them can be quite painful, I rely on a Morphine patch and other medications for pain control. Sadly, at 29, I am addicted to pain medications. I walk with crutches and sometimes use a wheelchair when a lot of walking is involved. I am also supposed to wear braces on both feet for ankle support, but I am stubborn and have not wore them since September. However, I was a good girl today
and made an appointment to get my braces adjusted and to get some new shoes to fit them. As for my hips they are affected. They are rotated inward and I limited flexibility with them. My adductor muscles were loosened as a child so I have no problems with the keeping legs together or spreading department. (Once again that sounds so wrong). I am also near-sighted and wear glasses and my intelligence was completely unaffected.
So that is pretty much the medical part of how I am affected. As far as the rest of my life I am just like everyone else. I refuse to use the word "normal." It is not in my vocabulary and I do not think the concept of it exist. I also hate the word "crippled." You can call me peg-legged, gimp, disabled, whatever just not that. I often make fun of myself so such expressions do not offend me, but the "C" word makes me growl!
I had a fairly normal childhood. Although most of it was spent in a hospital. I graduated high school 11th out of a class of 400. I later graduate college and earned a Bachelor's in Psychology and an Associates in English Literature. Currently, I am pursuing a Masters in Adult Education. It is my ultimate goal to become a college professor. Being disabled has not affected my relationships. I dated a guy for over 18 years and was engaged until last April. Now I am with a new guy and we have been together almost a year. It will be a year in June. He is also a member of the site and actually was who introduced me to it. He is known in the community as Pezmaster. He is awesome. A little geeky and loves video games, but really one of the kindest people you could ever meet. I fell in love with him the night he texted me saying, "You will never be disabled to me!"
Not to mention, he was the first guy not to immediately ask if I could feel my legs when we met. Of course I can feel my legs. He humorously asked if I could drive. Sadly, I can not. It is possible with an adaptive car, but I am way too nervous to drive, so I have made no effort. I am fine with Pezmaster hauling my ass around. I do not want to get too personal, but I am sure some of you are curious. My disability does not hinder our sex life. We have to make a few adjustments here and there, but we get it on just like the rest of you! We are currently living together with his four year old little boy who is anxious to help at a moments request. He and I are looking for our own place at the moment because we currently live with his parents. Money is tight so some saving has to be done. In time, though I know our life will be everything I have ever wanted. Nothing is perfect, but right now my life is as close as it could be to it.
I will post a picture of me in my wheelchair. For some reason, I never take pictures with my orthotic equipment. I am not ashamed in the least. They just do not need to be there. My face is all that needs to be seen, but since I posted this blog I thought I would show one. I would include one with my crutches which I use most often, but the last picture taken with me and my crutches was taken when I was six!
ME AND MY WHEELS (APRIL 2010)
I feel that the reason I was born is because I have a specific purpose to serve on this Earth. I have yet to figure out what this purpose is, but even if it doesn't come before my death, I am ready for that too! I am an organ donor and I have also documented that I want my body donated to science. That way through my death, doctors can learn from the condition and someday conditions such as these may not exist anymore. Who knows, maybe I might help find a cure for something worse like cancer! Only I can hope!
Until then, I try to educate people on disabilities as well as avidly donating to charities that help research such conditions. Some of my favorite charities include, "The March of Dimes," anything for autism research, Stand Up 2 Cancer, and the annual MDA telethon hosted by Jerry Lewis!
I would like to include some valuable links for all of you to enjoy:
THE MARCH OF DIMES OFFICIAL WEBSITE
THE UNITED CEREBRAL PALSY FOUNDATION
AUTISM RESEARCH INSTITUTE
STAND UP 2 CANCER
I promise the next blog will not be long and resemble a college lecture. I just thought it was time to be fair and honest and share all of me with you guys, just as you have in return. I hope that it will not change your perception of me, but if it does then you aren't worth knowing. (Not trying to sound rude, but acceptance is the key!)
VIEW 12 of 12 COMMENTS
sexysteve:
You go girl great blog I found it very interesting and also informative. I will follow your lead and do a blog on a more personal level as I am also disabled. 5 years ago I broke my neck while on holiday in Rome. I am glad you have a great outlook on life and have someone to love I'm very happy for you. Feel free to check my blog in near future cheers cutie 
nickstone:
You are awesome sweet Lady and you shine I wish you a rad evening. Thank you, from heart & soul, for sharing your story. xoxo
I wish you a rad evening. Thank you, from heart & soul, for sharing your story. xoxo