A disabled's dream
Donation protected
My name is Scott, and I am currently 20 years old living in
Sydney Australia. I have created this page in the hopes of being able to raise
money for me to be able to create something with my passion and love of
photography. I was born with a genetic connective tissue disorder called Ehlers
Danlos Syndrome (EDS). I could give you the whole medical diagnostic
information but I will link you to the wikipedia page for that. From my
perspective I struggle every day with the most basic of tasks. EDS means my
muscles, but more importantly my connective tissue that holds all my body
together, are either too stretchy or have mutated in some degree to not
function correctly. This results in organ and muscle complications the older I
grow.
For an easier to understand version of this I have a youtube account where I uploaded some vlogs describing different issues relating to EDS and how it impacts my life http://www.youtube.com/user/Simplygiant/videos
I struggle every day with the most mediocore and simple of tasks. For example I dislocate my wrist regularly turning on the sink tap or the shower if I am not consciously thinking about it and how much resistance it is supplying my hand. Sleeping can be a very daunting task for me as it often results in many dislocations and subluxations (half dislocations) through the night. This is because my body is so fragile that most positions put too much weight on my joints causing them to slip in and out of place, in turn giving me immense pain.
I guess for me to able to describe this pain to most people I have had to learn some certain correlations, the best being a broken bone. Most people have broken at least one bone in their life. I like to say that is about a 10/10 on the pain scale, it can't get much worse. Well for me each dislocation on my pain scale registers about an 8 if it doesn't stress many muscles, up to a 9.5-10/10 depending on the muscles and nerve's involved. Now multiply this by up to 6-7 dislocations in one night. That is pretty similar to breaking 5-6 bones just from sleeping, that I say, is a close approximation to the amount of pain EDS can cause me on my bad days.
Some personal information about me growing up with EDS, I was diagnosed with it at 18 which is very late in life compared to most people. Growing up I would constantly dislocate, break, bruise, and injure myself. By the time of writing this I have broken 39 bones, one of the worst being my L4 vertebrae in my back as well as resulting in slipped disc's on either side. This caused severe pain for months and the loss of the ability to walk due to swelling around my spinal column. Due to the lack of muscle use in my legs, I had to relearn to walk at the age of 17 in the 2nd last year of my high school education. This caused me to miss all but 2 weeks of school which I only attended for a few hours each day.
I have had multiple reconstructive surgeries to fix joints and the muscles associated with them, the most recent being my knee which now has a series of screws and stretch material acting as a muscle to stop my knee cap from dislocating.
I did end up finishing my high school education, but at the cost of my physical health. One of the most injured joints on my body are my wrists. I have broken my left 6 times and my right 3 times. This combined with the large amount of writing preparing for my final school exams caused me to lose my ability to write more than a few mere sentences now before horrible pain stops my hands and fingers from moving. I was luckily able to enter university where I chose to study Occupational Therapy. An occupational therapist is a person who looks at being able to help others who are disadvantaged either physically or mentally in some degree, but instead of fixing the problem like most doctors and specialists, we focus on adapting tasks and the environment around the patient to best suit their needs. Now you might be thinking that it was strange for me to chose a medical based field, but I have a natural love and urge to help people because I know how hard life can be and how difficult times are in those darkest moments. I have been there all alone, no doctors would listen to me, no one would understand the pain I was experiencing, not even my parents who dismissed it for years because the doctors said I was lying. I want to be able to help people so they don't ever have to experience this whether they are young or old, it is not a nice feeling. I WANT TO BE ABLE TO HELP. I WANT TO BE ABLE TO GIVE BACK TO PEOPLE. I want to be able to give back to the world for all the amazing and wonderful people who have helped me through my troubles in the last few years post my diagnosis.
I don't want pity from anyone as I try to stay strong and do the very best that I can with what I have been dealt in life. Yes it sucks some times and a lot of the time I want to give up and just let my body deteriorate and become a vegetable, but, in the last year I have FELL IN LOVE WITH PHOTOGRAPHY.
It is the best thing I have ever done in my life. It allows me to express myself and how I am feeling both mentally and physically, or if I just wanted to photograph something interesting I can as well. For me, I see photography as a way of capturing those moments. Moment's in time that are never going to be repeated again. I am able to help people by capturing those moments and showing it back to them, and being able to see their faces light up with joy and happiness means so much to me. It gives me this feeling that I am giving back to the world.
My goal is to be able to photograph Australian wildlife, particularly rare and endangered species, and eventually be able to get a book printed and published. My goal is for this book to be given to people of all ages from not just Australia but around the world, showing the importance of wildlife and how it can have a profound impact on our lives as humans, benefiting our health and creating memories.
I have created one book already but at my own expense as a gift for my grandparents this last Christmas. It can be found here. Photography for me is a way of escaping the difficulties of everyday life and being able to stop and capture those moments which are important to me.
This is why I am turning to the Go Fund Me community. I want to be able to achieve something of importance to myself, this wildlife book. But to do so, I need some photography equipment and funding for the book due to my family and I being under constant financial stress with my medical bills as well as my sister's, who has EDS also.
My goal with the money is to be able to purchase a lens which allows me to photograph animals from a distance. I don't want to scare them, but also it saves me from walking far due to the pain walking causes in my knees and ankles. The lens I am looking at is the Canon 500mm f4.0, probably second hand if I can find one, but will use my own money as well if I can't.
This is my main goal to achieve and complete before my EDS progresses to the point where walking is near impossible over the next 5-10 years.
Further examples of my photography work can be found at:
http://www.sturnerphotography.com/
https://www.facebook.com/sturphotography
http://www.flickr.com/photos/scottyt_photography/
http://yourshot.nationalgeographic.com/profile/379463/
For an easier to understand version of this I have a youtube account where I uploaded some vlogs describing different issues relating to EDS and how it impacts my life http://www.youtube.com/user/Simplygiant/videos
I struggle every day with the most mediocore and simple of tasks. For example I dislocate my wrist regularly turning on the sink tap or the shower if I am not consciously thinking about it and how much resistance it is supplying my hand. Sleeping can be a very daunting task for me as it often results in many dislocations and subluxations (half dislocations) through the night. This is because my body is so fragile that most positions put too much weight on my joints causing them to slip in and out of place, in turn giving me immense pain.
I guess for me to able to describe this pain to most people I have had to learn some certain correlations, the best being a broken bone. Most people have broken at least one bone in their life. I like to say that is about a 10/10 on the pain scale, it can't get much worse. Well for me each dislocation on my pain scale registers about an 8 if it doesn't stress many muscles, up to a 9.5-10/10 depending on the muscles and nerve's involved. Now multiply this by up to 6-7 dislocations in one night. That is pretty similar to breaking 5-6 bones just from sleeping, that I say, is a close approximation to the amount of pain EDS can cause me on my bad days.
Some personal information about me growing up with EDS, I was diagnosed with it at 18 which is very late in life compared to most people. Growing up I would constantly dislocate, break, bruise, and injure myself. By the time of writing this I have broken 39 bones, one of the worst being my L4 vertebrae in my back as well as resulting in slipped disc's on either side. This caused severe pain for months and the loss of the ability to walk due to swelling around my spinal column. Due to the lack of muscle use in my legs, I had to relearn to walk at the age of 17 in the 2nd last year of my high school education. This caused me to miss all but 2 weeks of school which I only attended for a few hours each day.
I have had multiple reconstructive surgeries to fix joints and the muscles associated with them, the most recent being my knee which now has a series of screws and stretch material acting as a muscle to stop my knee cap from dislocating.
I did end up finishing my high school education, but at the cost of my physical health. One of the most injured joints on my body are my wrists. I have broken my left 6 times and my right 3 times. This combined with the large amount of writing preparing for my final school exams caused me to lose my ability to write more than a few mere sentences now before horrible pain stops my hands and fingers from moving. I was luckily able to enter university where I chose to study Occupational Therapy. An occupational therapist is a person who looks at being able to help others who are disadvantaged either physically or mentally in some degree, but instead of fixing the problem like most doctors and specialists, we focus on adapting tasks and the environment around the patient to best suit their needs. Now you might be thinking that it was strange for me to chose a medical based field, but I have a natural love and urge to help people because I know how hard life can be and how difficult times are in those darkest moments. I have been there all alone, no doctors would listen to me, no one would understand the pain I was experiencing, not even my parents who dismissed it for years because the doctors said I was lying. I want to be able to help people so they don't ever have to experience this whether they are young or old, it is not a nice feeling. I WANT TO BE ABLE TO HELP. I WANT TO BE ABLE TO GIVE BACK TO PEOPLE. I want to be able to give back to the world for all the amazing and wonderful people who have helped me through my troubles in the last few years post my diagnosis.
I don't want pity from anyone as I try to stay strong and do the very best that I can with what I have been dealt in life. Yes it sucks some times and a lot of the time I want to give up and just let my body deteriorate and become a vegetable, but, in the last year I have FELL IN LOVE WITH PHOTOGRAPHY.
It is the best thing I have ever done in my life. It allows me to express myself and how I am feeling both mentally and physically, or if I just wanted to photograph something interesting I can as well. For me, I see photography as a way of capturing those moments. Moment's in time that are never going to be repeated again. I am able to help people by capturing those moments and showing it back to them, and being able to see their faces light up with joy and happiness means so much to me. It gives me this feeling that I am giving back to the world.
My goal is to be able to photograph Australian wildlife, particularly rare and endangered species, and eventually be able to get a book printed and published. My goal is for this book to be given to people of all ages from not just Australia but around the world, showing the importance of wildlife and how it can have a profound impact on our lives as humans, benefiting our health and creating memories.
I have created one book already but at my own expense as a gift for my grandparents this last Christmas. It can be found here. Photography for me is a way of escaping the difficulties of everyday life and being able to stop and capture those moments which are important to me.
This is why I am turning to the Go Fund Me community. I want to be able to achieve something of importance to myself, this wildlife book. But to do so, I need some photography equipment and funding for the book due to my family and I being under constant financial stress with my medical bills as well as my sister's, who has EDS also.
My goal with the money is to be able to purchase a lens which allows me to photograph animals from a distance. I don't want to scare them, but also it saves me from walking far due to the pain walking causes in my knees and ankles. The lens I am looking at is the Canon 500mm f4.0, probably second hand if I can find one, but will use my own money as well if I can't.
This is my main goal to achieve and complete before my EDS progresses to the point where walking is near impossible over the next 5-10 years.
Further examples of my photography work can be found at:
http://www.sturnerphotography.com/
https://www.facebook.com/sturphotography
http://www.flickr.com/photos/scottyt_photography/
http://yourshot.nationalgeographic.com/profile/379463/
Organizer
Scott Turner
Organizer
North Wahroonga, NSW