Poll: What are your top five questions about spina bifida?

Whenever I am out in public, it seems like at least one person comes up to me and asks me why I am in a wheelchair. I try to explain my disability to them the best way I can, but still know there are so many questions that go unasked, and more often than not, unanswered.

I want to hear your questions about spina bifida. Do you understand the disability? What could I help you understand better? I want everyone to understand my disability the best they can, so I am giving everyone reading this the opportunity to ask me ANYTHING about spina bifida and its impact on my life. Do not be scared to ask me questions. I have nothing to hide, and anything is fair game. I’m perfectly okay answering personal questions… in fact I truly welcome personal questions. It may help me understand my disability better so I am better able to explain it to others in the future.

What do you want to know?


11 thoughts on “Poll: What are your top five questions about spina bifida?

  1. thanks for the tweet telling me about your blog!
    I don’t get around to everyone all the time to read or say hi, but I will certainly try!
    This is a great thing you are doing. People don’t understand some disabilities…and having the courage to share and answer all questions is honorable!

    • Thank you so much. It took a lot of courage and soul searching, not to mention prayer, before I started this blog. Some of the stuff I write is personal, but I want to give people hope for a brighter tomorrow. I have to admit I don’t understand some of the things associated with spina bifida. Hopefully by answering questions from people like you, I can have a better understanding.

      I would love to answer your questions about my disability. Please don’t be scared to ask me anything. I’m here for you and want you to ask me the most difficult, personal questions. What can I help you with?

  2. I think this is a great opportunity to really help others! From my standpoint, I connect with many women during their pregnancies and after. As you can imagine, as mothers do, we worry about every little thing while pregnant. One of the biggest is when the doctors tell us to get plenty of folic acid during the beginning stages especially of the pregnancies, in order to help prevent spina bifida. So my questions would probably be in align with what most expectant mothers are worried about.

    1. What happened as a newborn when you were born? Could your parents tend to you like any other infant, or were there special precautions, etc?

    2. If you could tell an expecting mother a few things to prepare for, that you have learned along the way, that might help them should their own child be born with the condition, what would they do best in knowing?

    3. What are the restrictions you have, if any, in terms of physical activity and eating? Do you have to be cautious of upper body exercises, or do you have to follow a certain diet?

    4. Does your condition cause you any pain in your every day life?

    5. What type of surgeries have you had to go through, and how often? Did you have surgeries as an infant?

    6. Sorry, this is a last minute one that came to mind! Did anything in particular happen during your mother’s pregnancy with you that might have led to your condition?

    • Hi Nichole,

      I just wanted to touch base with you and let you know I have not forgotten about you. I hope to have the answers to your questions by this weekend. I’m going to try to talk to my mom before then because she may be able to provide some of these answers better than I could.

      I have had several surgeries since I was born, too many to think about right now, but when I get home I will respond back, probably by e-mail, and will try to answer some of your questions the best I can.

      Thank you so much for your patience and for checking out my blog. If you ever have a question please let me know. Take care and have a good afternoon.

      God bless, Jason

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  4. I admire your courage in sharing your story and willingness to answer personal questions! If I can think of a question I’ll try to ask, but for now I appreciate your openness and wish you all the success in the world!

  5. Visiting from OneShotWednesday. What a great attitude and outlook you have, and a beautiful way of expressing it. I love the story of your determination to get a job doing what you love. It does take courage to blog, to tell our stories but never forget there’s someone who needs to hear your story, for who that will make all the difference.

  6. I have a few questions, i don’t understand it at all really, i do know some things about like, cerebral palsy and other things, but i never really understood what spina bifida was i first heard about it now.

    Does it affect your mobility in your hands do you communicate online through voice interaction or do you type? Does it just affect your lower half can it affect your entire body?

    Does it affect you having children?

    How has it impacted your social life?

    Do you feel that it’s made you withdraw some because of the societal views of some people and how does this make you feel?

    Do you take medications is it treatable?

    Were you born with it?

    Do you think your life has changed from being active to non active were you ever active? meaning involved in sports, hobbies, any outside events..?

    Do you do guest speaking on it?

    Have you been able to connect with other people and have you ever thought of starting your own group sessions to discuss this?

    Do you think you’d like to be a counselor? have you ever studied to be one? could you see yourself counseling others that suffer from the same?

    Did you go to school ? How did this effect your education?

    Do you have a support group have you thought about creating one? Do you think that others might join you in doing so? Have you ever developed a website that might invite the idea?

    What are some of the things you can offer someone who is in the same position?

    What encouragement can you give to someone who suffers from this?

    These are some questions i just had for you hope this helps!

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