By Jennifer Bechard
Imagine how a 10 year old would feel lying in a hospital bed not knowing what is going on or where to turn to for support. With too many questions and not enough answers, a condition such as hydrocephalus can take an emotional and physical toll on any individual, especially a child. I found myself in this place when I was first diagnosed. Unfortunately, it wasn’t until the age of 17 when I realized how many people have hydrocephalus. I felt and still feel uneasy knowing that others believe they are in this fight alone. In actuality, approximately one million Americans have to live with this condition every day.
Having CO-Chaired the annual Detroit Hydrocephalus WALK with my mother, Denise Bechard, for the past four years, I decided meeting once a year was not frequent enough. Hydrocephalus is a lifelong condition; therefore, a support network is needed for parents, young adults and elders year round. I knew I could not make the fear, terror or pain disappear for others, but I could share my experiences and form a network of support throughout Michigan.
The support program in Detroit took off rather quickly and the WALK expanded exponentially this past year. On August 7th, 2010 I underwent my 91st surgery due to shunt complications. Ironically, while I was heading into the operating room, 465 WALKers were taking steps to improve life in Westland, MI. Although it was heartbreaking having to miss such a meaningful event that we worked year round to accomplish, I now feel more determined than ever to make a change.
Even though the 4th Annual Hydrocephalus WALK was such a success, just helping individuals in the state of Michigan isn’t enough anymore. I am yearning to reach out and find a way to ensure that no child grows up wondering if he or she is the only one with this neurological condition. My opportunity came in August, when I was offered a position as the Support Liaison with the Hydrocephalus Association. With my newfound presence in the HA, it was the perfect time to start making waves.
My vision is to strengthen our existing support groups and create an HA presence within each one. I am striving for change and my hope is to have at least one location in each state where children and adults, directly or indirectly affected, are able to gather not only for support but for awareness as well. The groups will set their own schedule, but I hope to encourage them to have bi-monthly meetings within each group, with each individual group having its own variations and special events. To help spread awareness and create research opportunities, support groups should involve local hospitals and medical personnel.
As a part of the Hydrocephalus Association staff, my goal will be to further expand our program nationwide. We will encourage all groups to work with state legislature to enable them to become advocates for our members. Additionally, we will train our own members to be advocates themselves. As an individual with this condition, I believe it is of the utmost importance to know what hydrocephalus entails.
Also, it is important to educate those who do not have the condition so we can make hydrocephalus a household term. Currently, you mention the word hydrocephalus and people look at you as if you are crazy. I have personally come across numerous medical professionals who are not familiar with the health condition. I find this appalling and completely unacceptable.
Hydrocephalus has been the biggest obstacle I have had to overcome in my young life. I never thought in my wildest dreams I would be where I am today but thanks to my family, friends and the Hydrocephalus Association I have begun making a difference. I’ve never been someone to back down from a challenge and I am willing and ready to take on life’s next fight. I believe if we work together, as one, we can not only help each other manage the condition, but bring hydrocephalus to the forefront of public attention. The sky is the limit to what we can achieve and the advances we can materialize. I am ready to spread the word like wildfire! ARE YOU?