Making Life Happen: Living Life with Spina Bifida and Hydrocephalus

October is Spina Bifida Awareness Month and today is the first World Spina Bifida and Hydrocephalus Day sponsored by the International Federation for Spina Bifida and Hydrocephalus (IF) and supported by the European Parliament. Individuals within our community live their lives with both spina bifida and hydrocephalus. The National Institutes of Health (NIH) define spina bifida (SB) as a neural tube defect (a disorder involving incomplete developmentof the brain, spinal cord, and/or their protective coverings) caused by the failure of the fetus’s spine to close properly during the first month of pregnancy. Infants born with SB sometimes have an open lesion on their spine where significant damage to the nerves and spinal cord has occurred. (NIH National Institute of Neurological Disorders and Stroke (NINDS)) Myelomeningocele is the most severe type of spina bifida and hydrocephalus affect as many as 90% of children with this condition. (NIH)

In our efforts to raise awareness about spina bifida and hydrocephalus, we would like to highlight an inspiring young adult from our community. Meet Luke Russell, a freshman at the University of Wisconsin-Whitewater who plans to major in marine biology with either a second major or a minor in psychology. Luke was diagnosed with hydrocephalus before he was born. He also has spina bifida and received his first wheelchair when we was 15 months old. When Luke’s hometown and current college classmates see Luke, they look beyond the wheelchair and see a friend, an athlete, and a champion. Luke has had his struggles but he never let that detract him from his own personal goals and, consequently, from helping people look beyond his chronic health conditions to see his true self and spirit.

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

LR: My hobbies, interests and activities include sports, animals, church activities, and German language and culture. My favorite sports are basketball, track, and hockey. I am passionate about wheelchair basketball and play on my college team, the Warhawk Wheelchair Basketball Team. Before college I played on the Milwaukee Wheelchair Bucks Championship Division (Men’s) Team and also I also played basketball for the Mad City Badgers since I was eight years old, eventually becoming the point guard. You can see me playing by clicking on this link. I have won many awards for wheelchair basketball, including being named to the National Wheelchair Basketball Association NIT First Team All Tournament Team at Nationals several years in a row, Northern Junior Conference Second Team All Conference Team, again for several consecutive years, and Most Valuable Player of the Northern Junior Conference in 2009. I participated in many wheelchair basketball demonstrations at high schools throughout Wisconsin to promote wheelchair sports and advocate for the talents of wheelchair athletes.

I am also an avid wheelchair track and field athlete. I won the first ever Wisconsin Interscholastic Athletic Association Wheelchair Division State Track and Field Championship trophy in 2010. Click here to see the local news story. My favorite events are the mile and shotput. I was the only wheelchair athlete on my high school track team, where I received the Courage Award as a freshman. As a senior, the coaches selected me one of the captains of the team. In addition, I was co-captain of the Wisconsin Warriors Sled Hockey Team and was invited to play at the US National Sled Hockey Development Camp three years in a row.

In addition to sports, ever since I was a preschooler and addicted to the show “Zoboomafoo,” I have been intensely interested in animals. “Zoboomafoo” is a TV show featuring two zoologists and their “pet” lemur going out into the wild and observing and talking about animals. I seemed to have a knack for remembering every animal fact presented on the show. I have been fortunate to talk my parents into letting me have a number of pets, including two parakeets, several dwarf hamsters, a labrador retriever, and two African water frogs that I have owned since they were tadpoles. One of my favorite things to do is combine my trips for wheelchair sports with visits to zoos in different states, for example the Milwaukee Zoo, Omaha Zoo, and Denver Zoo. Last year I was fortunate to travel to Miami to watch the Miami Heat play the New York Knicks, and spend a day at the Miami Zoo and a day at the Miami Seaquarium with the Make-A-Wish Foundation. I swam with the dolphins, rode a camel, fed the giraffes, and talked to the different staff about how to become a dolphin trainer or zoologist.

Another activity that has been very important in my life is the Higher Ground Youth Group at my church. I have been able to participate in three missions trips – to Eastern Kentucky, inner city Milwaukee, and Downtown Madison. Some of the ways I served in these communities included clearing alleyways in drug-filled neighborhoods, mowing and clearing brush at a ranch for troubled teens, helping at a homeless shelter in Madison, repairing run-down homes in Kentucky, and doing child care for stressed families. My youth group also has done a lot of community service year round, such as visiting residents in nursing homes, helping at the food pantry gardens, and providing child care activities for Bhutanese refugees in Madison.

HA: What are your educational and career goals?

LR: My educational goal is to pursue degrees in marine biology and a minor in psychology at the University of Wisconsin-Whitewater while playing on the Warhawk Wheelchair Basketball Team. I hope to participate in some of the field learning experiences Whitewater offers by doing some water studies at Kettle Moraine, summer trips to study biology at Yellowstone National Park, and hopefully a semester abroad in Australia to study the Great Barrier Reef. I want to work at a zoo, aquarium, wildlife center, and/or pursue scientific research that will help the animal kingdom and environment. I also hope to find ways to pass on my knowledge and passion for animals, science, and the environment to children through educational programs that are completely accessible to people with all types of disabilities.

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

LR: I was born with spina bifida and hydrocephalus. The spina bifida is obvious to anyone who sees me since I am in a wheelchair. The most challenging aspect to having spina bifida is the discrimination. For example, in the 7th grade, I wanted to join the track team but they wouldn’t let me because I was in a wheelchair. They said it was a safety hazard – that I could run over another runner. I kept fighting the decision until they finally allowed me to compete in 9th grade…but I had to compete by myself unless there was another person in a wheelchair. On an every day basis, it can be hard to be in a wheelchair, especially when I get to an older building with no ramps. But I’m a positive person. I find a way.

Hydrocephalus has also had a major effect on my life. The effect of the fluid on my brain made me into a very verbal learner and made nonverbal cues harder for me than for most other kids. It affected what they call the “executive function” area of my brain. With the help of my doctors, teachers, and my mom, I spent a lot of time figuring out what learning techniques work best for me. I worked hard in my younger years to try many different organization techniques to help me remember due dates, instructions, and even remember to hand in the work once I had finished it — that was hard for me! I learned to use planners, graphic organizers, a “homework folder,” etc. as tools to help me overcome my difficulties with organization. I learned to break my work into manageable sections and take breaks when I have “mental fatigue.”

I discovered I am a strong verbal learner. I do my best if I focus on listening during lectures and focus less on writing notes. I now advocate for myself by talking to my instructors about how this can work in their class. It can be different for each class. For example, this year in my College Algebra class, the teacher and I agreed I will listen during the lecture, maybe writing a few notes, but mostly absorbing what the teacher is explaining. If I need to, I ask for the teacher’s notes, but often by concentrating on my strength (listening to the teacher rather than writing), I find I don’t need notes. Another example, is English Composition. When the teacher assigns an essay, I first spend time discussing with the teacher or an assistant what my ideas are, then I write up a graphic organizer, then use the organizer to write up my ideas. I read the essay out loud and discuss again the parts I want to refine. Using an organizer, breaking up the task into manageable parts and using the verbal technique of discussing my ideas, has made me successful in my English class.

Due to my hydrocephalus, my elementary and middle school years were very hard for me as I was discovering through trial and error how I learned best. Eventually all the hard work paid off and I completed a college preparatory curriculum with A’s and B’s in high school. I believe that going through those difficult times due to my hydrocephalus has given me a foundation that I can use for success in college and my future career. I have learned what my strengths and weaknesses are, techniques that work for me, how to advocate for myself, and perhaps most important of all, how to be persistent in pursuing success even when things seem overwhelmingly difficult.

HA: How would you help others with spina bifida and hydrocephalus?

LR: I think that mentoring others by telling my story of the struggles I had when I was younger and how I have been able to be successful in school and sports despite my hydrocephalus can help others. I have been told by parents of some of my younger wheelchair basketball teammates that their children look up to me. One of the girls on the team asked me to come and speak at her school about spina bifida and hydrocephalus. I talk to the parents, as well as to the kids, about my struggles and how I have been able to deal with the challenges of hydrocephalus. I always try to be a good example to the younger kids and encourage them when they deal with their own struggles. I looked up to other successful student athletes with spina bifida and hydrocephalus when I was younger, and now it my turn to hopefully inspire the younger kids who look up to me.

 

Resources for Youth and Young Adults

If you are a teen or young adult living with spina bifida and/or hydrocephalus, we encourage you to check out the programs offered by both the Spina Bifida Association (SBA) and the Hydrocephalus Association (HA).

The Spina Bifida Association (SBA) has a great Web site for tweens and teens called SB Tween2Teen. Complete with blogs, videos, real stories, fact sheets, and an Ask the Expert feature, the interactive site helps tweens and teens navigate the difficult road to adulthood which can be complicated further by this challenging birth defect. SBA youth can log onto www.sbtween2teen.org and become part of a new community.

The Hydrocephalus Association’s new program – Teens Take Charge (TTC) – trains teenagers and young adults (and their siblings), who are affected by hydrocephalus, to become self-advocates with both health professionals and with their legislators. The program provides support, trainings, and awareness and fundraising opportunities so that teens can be an effective force in making their stories heard with their representatives. HA has created a place for teens and young adults (ages 12 to 25) to talk via Facebook and Twitter; go check it out! Join us and help create a community of teens making changes happen!

Publications and Online Resources

In addition to our Teens Take Charge area of our website and Facebook and Twitter spaces, we also have a number of useful resources and publications for youth and young adults. If you haven’t already, we hope you have a chance to read these publications and visit these other organizations online.

Health Care Transition Guide for Teens and Young Adults With Hydrocephalus

College and Hydrocephalus

Questions for Teens and Transitioning Young Adults

• Ten Tips for Talking to Teachers

Teens Health

PACER Teens Against Bullying

National Collaborative Workforce and Disability for Youth (NCWD/Youth)

International Federation for Spina Bifida and Hydrocephalus

 

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3 Responses to “Making Life Happen: Living Life with Spina Bifida and Hydrocephalus”
  1. Jerri Kamicker says:

    I LOVE this story. Way to go, Luke, and kudos to you for sharing it. I’ll be sharing it with my son, age 13 1/2 with congenital hydrocephalus. He’s not an athlete, but everything you said in How … impacted your life” is EXACTLY what he is working on. And he, too, is on that college track. Our community is proud of all.

  2. Zenith De Jesus says:

    Hi, I love you story….!! I have a 11 yrs boy with spina bifida and hydrocephalus, he love all sport and all outside activities…. But don’t like so much the school, have some many trouble with the teacher… I hope you story help him to know, not all can be easy, but he need learn to work with that….thank you and God bless you

  3. Amy C says:

    What a great article. We are blessed to know this amazing young man and he is an inspiration to everyone in our family (he ran track with my oldest son), but especially my youngest son Andrew who also has Spina Bifida and Hydrocephalus (in fact, that’s Andrew in the last row of pictures on the right). Luke is not only a friend to Andrew but also a role model of who he aspires to be. He often talks about wheeling on the track like Luke when he grows up. You could not have picked a finer young man to interview. We should all aspire to be the kind of person he has grown up to be.

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