“Never underestimate the strength of the human spirit. Behind every illness we are studying there are real people living it every day. It is important to never lose sight of those people. They are the reason we do what we do. Let them inspire you to always keep working harder, and never forget the profound difference even the smallest act of kindness and compassion can make.” A quote from this week’s interview with Jamie Wright, our Support Group Leader in Houston, TX, as we continue our history series commemorating our 30th anniversary. Jennifer Bechard sits down with Jamie to talk about living with hydrocephalus, her role as a support group leader, and her thoughts on HA.
Jamie was born six weeks premature and was diagnosed with post-hemorrhagic hydrocephalus. As a result she was shunted when she was 20 months old. Since then, she has undergone 3 surgeries to revise her shunt. Jamie is now 25 years old and is currently in her second year of medical school at the University of Texas Medical School at Houston, where she is in a combined MD/PhD program. She plans on doing research on perinatal brain injury (brain injury in newborn babies) in the hopes of finding ways to prevent or potentially reverse the injuries that sometimes lead to hydrocephalus and cerebral palsy. With this in mind, she is currently interested in becoming a pediatric neurosurgeon or neurologist.
HA: How did you find the Hydrocephalus Association and why did you decide to volunteer?
Jamie: I found the Hydrocephalus Association’s website while doing research on hydrocephalus for a class project in college. It was not until a few years later after meeting other individuals with hydrocephalus and getting to know some parents of children with hydrocephalus that I decided to start a support group.
HA: Why do you feel support groups are so valuable and crucial to our hydrocephalus community?
Jamie: I did not meet someone else with hydrocephalus until I was in college, but when I did it was great to be able to sit down and talk to someone who had been through it, too. After meeting some parents of children with hydrocephalus, I realized that they needed people who could relate just as much as their kids. I am realizing more and more all the time through my own experiences and the experiences of others just how much uncertainty and variability there is when it comes to hydrocephalus. It can be scary if you have no idea what to expect and frustrating when it feels like there is no one who understands your concerns.
HA: What are three things you want your members to walk away with and/or gain from your support group meetings?
Jamie: I hope this group will help those affected by hydrocephalus to know they are not alone, allow them an outlet to voice their concerns and frustrations to understanding ears, and give them a means to become more informed about hydrocephalus.
HA: Where would you like to see your support group and the Hydrocephalus Association in 5 years?
Jamie: Our support group is in the largest medical center in the world, so I hope to see it bring together a diverse group of patients and families each month, and be a place where they can not only find connections, but friends.
As for the Hydrocephalus Association, I hope they continue to grow and are able to reach out to more people with support groups and WALKs in even more cities across the country. As a future clinician and researcher, I would also like to see their continued involvement in the Hydrocephalus Clinical Research Network (HCRN) along with the newly forming Network for adult patients. In addition, I also hope to see continued growth of their laboratory research grant programs.
HA: What message do you have for the medical community, students in medical school and/or researchers?
Jamie: Never underestimate the strength of the human spirit. Behind every illness we are studying there are real people living it every day. It is important to never lose sight of those people. They are the reason we do what we do. Let them inspire you to always keep working harder, and never forget the profound difference even the smallest act of kindness and compassion can make.
HA: What message do you have for other young adults living with hydrocephalus?
Jamie: Don’t let a diagnosis define what you are capable of doing. If you want something, reach for it. It may not be easy but few things worthwhile ever are. Do everything you can with the gifts you have, even if it means getting a little bit creative, and don’t be afraid to ask for help with the rest. Whatever you do, never stop moving forward. Every challenge is an opportunity to learn and grow in strength and wisdom. Finally, get involved. The best therapy for a difficult situation is action.
HA: If you met another young adult who was recently diagnosed with hydrocephalus, what would you say?
Jamie: I can’t tell you what the future will hold or promise you that it won’t be hard, frustrating or at times painful. I can tell you it will be okay, no matter what happens, because you have a whole community here to support you. Never be afraid to reach out and ask for help. We are here for you!
HA: What message do you have for HA staff, the board, or founding members?
Jamie: Thank you so much for being here! I had not realized just how profound an impact the information you provide has until talking to someone diagnosed just a few years before me, before HA. Hearing what her parents went through trying to find information compared to my parents who still have the “About Hydrocephalus” booklet they received when I was first diagnosed. It is great to see how HA has grown and I am very excited about where your research, support, and advocacy efforts will take us! Thank you!