The following is a guest post I had the pleasure of writing for Stacy Juba’s blog, and I wanted to post it to my blog. In this post, I open up about why I decided to start “Jason’s Spina Bifida Journey” and my decision to allow people to share their stories on the blog; my love for photography and the most amazing pictures I’ve taken in the field; my mission to increase awareness of the different types of disabilities that are out there; and other writing projects I’m currently working on, when I’m not taking a road trip down the “Journey.” I hope you enjoy it. Look for my guest post on Stacy’s blog later this month and be sure to drop by and show her some love. Tell her Jason sent you 😉
You have some testimonials on your blog that indicate that anyone that wants to open their heart more and to be empowered to find hope and more love for life should read your blog. What made you decide to start Jason’s Spina Bifida Journey and share your story with others, and what kind of guest stories and interviews do you like to highlight on your blog?
Great question, Stacy. I decided to start “Jason’s Spina Bifida Journey” for a couple reasons. First, I wanted to finally open up a little more about myself and let readers know what spina bifida is and the obstacles I face every day. I know that most people may not know about spina bifida, even I don’t know everything about it, so I wanted to start the blog to provide a resource of information about what causes spina bifida, what the side effects are, the kinds of treatment available, and to just show that anyone with this disability can do anything they set their minds to if they just believe in themselves, surround themselves with a great support system and have the faith that anything is possible.
Writing has given me an outlet to get my feelings out on paper (or on screen), and blogging has opened doors I never would have thought were possible. I’ve met some amazing people in the blogging and social media communities, and they’ve really supported me and helped me develop the blog into something bigger than myself. I never expected to be a blogging success story and just wanted to find some way to make the world a better place for someone who may be having a bad day, may be doubting themselves or questioning whether what they’re doing makes a difference. I’m here to tell you, what you do DOES matter and makes a difference. Don’t ever doubt yourself and don’t ever, ever give up. With God, all things are possible. One of my favorite words is “impossible.” Now the literal meaning is that something is NOT possible, but if you look again the word actually says “I’m Possible!”
I have featured several people on the blog, and each one of them has a great story to tell, whether it be overcoming a disability, eating disorder or addiction and leading a productive, happy life; a reunited adoptee, who finally met her birth family after many years of searching; or an aspiring independent author who just released a new book and wanted to offer advice to up-and-coming authors. I wanted to provide an outlet for other people to share their stories, especially if they’ve been affected by a disability. I can honestly say that it’s really hard to open up about a disability and actually get someone to listen. So I wanted people to know that I understand what they’re dealing with and will always be available if they have a question or just need someone to talk to.
It took me a long time to open up about my disability, and it’s still hard to open up about some of the more personal things like how spina bifida affects my dating and sex life and being able to go to the bathroom. Growing up I didn’t have a lot of girlfriends, and I’m still single at 29 years old. Now I do have several female friends who are some of my best friends, and they have really taken me under their wing and helped me through a lot of tough situations. I’ve also been to several concerts a couple blocks from where I work and have danced the night away with several amazing women, who looked past the chair and saw a man who just wanted to have a good time. I just have a hard time opening up and striking up a conversation with a woman I’m interested in, I guess, and that maybe why I’m still single. But a lot of people have told me that God has a person in mind for me, I just have to wait and let Him lead her into my life.
I have no feeling below the waist, so I am not sure if I can have kids or can even have sex when the time comes. I do have the necessary “tools” but not being able to feel anything I’m a little curious about how I’ll feel and “perform” when I do get married and my wife and I do make love. I can’t use the bathroom like a normal person can and have to use special supplies to help me go. It really makes me sad and a little frustrated when I see other people using the bathroom with no problems, when I struggle to even have a bowel movement for weeks and sometimes months. One thing I’ve learned, though, is that I am bigger than my struggles and have the best friends and family in the world, who will always be there to help me when I stumble. I shouldn’t try to make everyone happy or wish I was the perfect person. I was put on this earth for a reason and should count my blessings every day for all God has given me. Sure I may have trouble going to the bathroom or having sex, but I can do so much more if I just keep my focus on Christ and allow Him to carry me through each day. If I do that, there is absolutely no way I will ever fall.
On your blog, you have a feature where you post pictures of people, places and things that make this world a wonderful, amazing, beautiful place to live. What are your a couple of your favorite pictures? What do you enjoy about photography?
This is an interesting question, and I’m actually glad you asked. I hadn’t really taken an interest in photography until I started my job about five years ago. I was a member of my high school and college newspaper staffs, but was more focused on writing stories people would read than taking pictures to accompany them. Back then, 10-15 years ago, we had to send the film to be developed and wait to check them out to make sure we could use them. We also scanned the pictures in, so they were always black and white when the papers came out, if memory serves me correct.
Now, with all the digital, high-definition cameras on the market, I’m able to check my pictures on location and can re-take them if necessary. Also, I am able to upload the pictures to my computer at work or at home and can delete all of the blurry, out-of-focus ones before we upload them to our website. When I first started working in the city of Marietta, Ga.’s, communications office in June 2007, I really had no clue about taking pictures. I honestly just thought you just got the subject in the viewfinder and clicked away. But thanks to my supervisor, hundreds of hours in the field taking pictures for articles we write and self-teaching myself how to use a camera, I have learned so much about the rule-of-thirds, shot composition, how the angle of the sun affects lens flare and what really makes a powerful shot. I’ve learned so much the past five years, and apparently it shows in the pictures I’ve taken because I’ve received some amazing feedback about some of my best work.
I’m out in the community at least two or three times a week taking pictures, depending on if we’re doing a story and if the weather is nice, so I hardly ever go anywhere without my cameras. I have a primary camera I use for work and also have a couple other personal cameras I take with me on work-related shoots and personal shoots I go on just for fun. I remember a couple of instances I’ve been on location for an assignment for work taking pictures, and some of the pictures I’ve taken have surprised even me. One time I was taking pictures of the local fire department burning down apartments to make room for a city park. One picture I took showed two firefighters sitting under a tree about 100 feet away, and they were surrounded by smoke, hanging their heads like the world was coming to an end. What made the shot even more powerful to me was the fact that I was sitting on the other side of some beautiful green weeds and was able to get them in the shot as well. It was almost like God was sending a message saying, “The world may in fact be coming to an end, but I will always be there to lead you to bigger and more beautiful things.”
The other picture I was captivated by I took during the 10th anniversary of 9/11. To set this picture up: a local Kiwanis Club commemorates certain anniversaries of the terrorist attacks by placing more than 3,000 American flags in a field in front of a beautiful mountain for an entire week. I went by the mountain almost every day of that week last year, and the picture I took that made me almost cry showed the “Field of Flags,” the mountain in the background and a replica of a cannon used during the Civil War. I’m not sure if this picture carries a message, but if it did it’d probably be that America and people with disabilities can overcome any attack or obstacle they set their minds to.
I love taking pictures because it gives me an escape from the struggles I face because of the spina bifida. Whenever I am behind the camera, I don’t have to worry about my back aching, not being able to feel my legs or not being able to go to the bathroom when I need to. I can just focus on whatever subject I am taking a picture of, whether it is a beautiful woman in a short skirt or a pair of jeans, a baseball field that has just been newly renovated, a stay-at-home mom with her kids having a picnic, or a soldier who has come back from overseas and is enjoying a day at the park with his fiancé and family. I feel like God has called me to take pictures and show people how beautiful this world is. We get bombarded with violence, high gas prices, politics and people arguing every day on the news, and it’s time people realized that we need to come together and embrace all the good things waiting to be seen and experienced, right in our back yard.
You also have started an extensive list of disability resources on your blog. How would you like to see this list grow and evolve? How important is it to raise awareness on these disabilities?
I started the list of disability resources to give not only other readers, but also myself a better understanding about all the information that’s available about spina bifida. As I’ve had other people on the blog, I’ve added resources about cerebral palsy, multiple sclerosis, muscular dystrophy, autism, you name it. I’m sure there are thousands of resources I haven’t come across yet, and I hope someone will read the blog, see the resources link at the top of the page, read the resources I’ve collected and e-mail me with more. I do know there are several local places that offer information, and hopefully when I can get some free time I can visit them and ask if they have anything I could add to my list.
Raising awareness about these disabilities is very important because hopefully more people will understand that the disabilities exist and understand that there are people out there who have these disabilities. I hope people will have more compassion for people with disabilities and understand that we are members of society just like everyone else. We may act a little differently, and may even have a different way to get somewhere, but we can offer society so much if people just give us a chance. Also by including resources about the different disabilities that are out there, I hope and pray that we can raise enough awareness to find cures for some of them and perhaps even get legislation passed to get special-needs citizens more involved with their communities at the local, state and national levels.
Who knows, we may eventually see the first President with special needs, who will fill his or her cabinet with people who have a disability. I know this may never happen but what a great thing to think about: the first Presidential administration full of people with different disabilities, different talents and different perspectives. Maybe then, people would take a step back and FINALLY learn to accept us for who we are inside and stop all the fighting, raping, terrorist attacks and learn to get along for a change. What a wonderful world that would be.
What kind of writing do you do “off your blog?” Any books or stories in the works?
Most of the writing I do away from the blog involves writing stories for the city of Marietta’s website. I work with all city departments to discuss programs and initiatives they’re working on; events coming up; and parks, road and transportation improvements that have been completed, are underway or are planned in the future. I absolutely love my job and am right where I am supposed to be at this point in my life. God led me to the city, and I firmly believe He has placed me in this position.
I am currently working on my first book, a fictional look into my life with spina bifida. I’ve written three chapters, but have had to put the book on hold because I’m working on a major project at work, collaborating with our IT department to renovate the city’s website. It’s taken about a year, and we are really close to unveiling it to the public, so it’s still kind of a surprise. I’ve found that writing a book isn’t as easy as writing content for my blog or the city’s website. I’m still learning plot development, character development, how characters interact with each other, how to set the scenes, etc. Hopefully I can have a rough draft completed in about a year. Stay tuned!!!
About Jason Bourne
Jason is 29 years old and has been disabled since birth. Diagnosed with spina bifida, he has no feeling below the waist and can’t feel his legs. He graduated in Dec. 2006 from Kennesaw State University, about 20 minutes north of Atlanta, with a B.S. degree in communications. He works with the city of Marietta, Ga.’s, public information office, writing press releases and taking pictures for the city’s website, mariettaga.gov. He loves reading, writing and taking pictures in his spare time. Be sure to follow him on Twitter and connect with him on LinkedIn. If you have a question or topic you’d like him to discuss, drop him a comment or send him an e-mail.