Looking Back…Moving Forward: Spina Bifida and Hydrocephalus Do Not Define Me

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Nicole lives with spina bifida and hydrocephalusOctober is Spina Bifida Awareness Month. As we continue our 30th anniversary interview series, Jennifer Bechard, Education Manager, sits down with Nicole Small. Nicole was born with both spina bifida and hydrocephalus. Spina bifida occurs during fetal development when the spine does not close all the way. (visit www.spinabifidaassociation.org to learn more about spina bifida.) Hydrocephalus can also develop as a result of the malformation. Individuals living with spina bifida can face cognitive, social, and physical challenges. Our two communities share many members, and the one resounding commonality we find across our two communities is an incredible strength of spirit, as reflected in Nicole’s interview below.

HA: Tell us a little about yourself – your hobbies, interests, and activities.

NICOLE: I am very family-oriented; they mean the world to me because I would not be here without their help throughout the years. I actually think me being born with spina bifida and hydrocephalus has brought us closer. The internet is a big part of my life. Growing up people we’re scared of my wheelchair, so oftentimes they were scared to talk to me and create a friendship with me. I began turning to the internet to share my story and raise awareness.

HA: What are your educational and career goals?

NICOLE: I want to educate others with spina bifida and hydrocephalus that there is life beyond the condition, life is what you make of it. I feel that people have two choices in life, they can sit around and feel sorry for themselves or they can choose to make something of themselves. I choose to make something of myself. I want to show others that a person with a chronic medical condition or disability can do anything an able bodied person can, but just in a different way after making some minor adjustments.

HA: How has living life with spina bifida and hydrocephalus impacted your life?

NICOLE: I have often thought and asked myself, “Would I be the same person I am today if I did not have spina bifida or hydrocephalus?” My answer has somewhat changed throughout the years. If I did not have either of these conditions, I would most likely be living on my own instead of with my parents – I’m not saying it is not great living with your parents, but what 24 year old wants to do that? As far as my attitude and my drive and motivation for things, I think that would still be the same for me despite my current situation because that is how my parents raised me and my brother.

HA: What has been the biggest challenge you have had to face in living with hydrocephalus and spina bifida?

NICOLE: I would say I have been pretty lucky thus far when it comes to having hydrocephalus, I’m currently 24 and I have only had 3 or 4 shunt revisions in my lifetime, so it has not really been an issue for me.

HA: What message do you have for the general public about yourself, HA, or living with hydrocephalus?

NICOLE: Just because I have a medical condition does not make me less capable of living life just like a “normal” person.

HA: What message do you have for other individuals your age living with hydrocephalus?

NICOLE: You have the same rights as any other person on this planet. Even though you have a disability, that does not change what you feel in your heart. Don’t give up on your dreams; find a way to pursue them to the fullest extent. Never give up because you only live once and if God got you to it, he’ll get you through it.

HA: Of all the work HA does for the hydrocephalus community, which do you find to be the most important or impactful?

NICOLE: I love that there is information available about hydrocephalus for people who do not know about it.

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