Why I WALK – For a Better Tomorrow

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alyse

By Alyse McGlaughlin
Indianapolis WALK Co-Chair

Life can change in an instant. In 2008, I was in a car accident. After being removed from the vehicle, I quickly started to decline, and was rushed to one of the best hospitals in Indianapolis for brain injuries. After a quick scan, a tectal glioma brain tumor and hydrocephalus were both found, but was determined to have been there since birth. At the time, other injuries took precedence, and I was told to follow up with the neurosurgeon who saw me in the ER to form a treatment plan. 

Three months prior to my accident, my mother suffered a major stroke. While she was recovering from her own health complications, she was now learning that her 17 year old daughter had a tumor and some brain condition that we had never heard of. After visiting the neurosurgeon, we both left not quite comprehending the seriousness of the condition and tossed it aside. I had very little headaches all my life, I was a great student, and l seemed to have no issues at all. I was determined to live my life just as I had before the accident.

My health continued to decline and the doctors could not figure out why. Because of this, I decided to start college at 18 as a part time student, taking two classes at the most per semester. While only taking a few classes and balancing my health, I kept all A’s in my classes and had a 4.0 GPA until the spring of 2013. That spring, I went from knowing and remembering everything to failing all tests. I could barely make it to my classes and my grade point average dropped down to 1.2. I assumed that I was worn out from school and took the time off to find a job to change things up. In the fall of 2013, at the age of 22, I started a new job with potential to excel within the company.

Two months into this job, I was making my 15 minute journey home, a place I have lived in for several years, when I became disoriented and had to call a friend to confess I had no direction of where I was or how to get home. (I was about a 2 minute drive away from home, near the elementary school I attended as a child.) The weeks continued and I steadily became worse, to the point where I had no idea who people were. After a visit to a doctor who I refer to as “the angel who saved my life”, it was determined that the pesky little brain condition (hydrocephalus!) that I blew off years prior, needed to be treated. After a series of blood tests, MRI’s and numerous doctor visits, the doctors found that my tumor was inoperable but non-cancerous, and that I was a candidate for an endoscopic third ventriculostomy (ETV) procedure.

After my ETV procedure, I wanted to learn everything I could about this condition. That is when I stumbled across the Hydrocephalus Association’s website which eventually led me to the Indianapolis WALK page. Being diagnosed with hydrocephalus was a confusing time for me. We had doctors throw all this lingo at us that we couldn’t understand, there was no full explanation for how I got it, and we didn’t know what to except for my future and my overall health. Finding HA made everything click. I finally felt like I wasn’t alone and I knew I always had a place to turn when no one else could explain what was happening.

One day I happened to be scrolling through Facebook when I saw a post stating that the Indianapolis WALK would be cancelled if a replacement for the current chair wasn’t found. Before I got “sick” I worked for another organization where we put on many small fundraisers and two big walks each year. Without hesitation I took a screenshot and sent it to my best friend who was also looking into volunteering with other organizations. I captioned the picture something along the lines “wouldn’t this be a fun thing to do”. I knew I could be a WALK chair without an issue, but I had been feeling “sick” again and knew this was not something I could take on alone. To my surprise, she quickly agreed, and we are now just a few months away from our first WALK!

The WALK has become so important to me because I know how it feels to be alone and confused after being diagnosed with hydrocephalus. I want to make sure this WALK becomes a staple in Indianapolis, so when a newly diagnosed teenager is given the scariest news of their life, they have a place to turn to. When parents get the news that their baby has this condition and they have some tough decisions to make, I want to ensure they have people who have been in their shoes to ask the tough questions to. My goal is not only to WALK with those who share our condition, but to build friendships and a community with each other, learn from each other, and lean on each other in our toughest times.

To escape the daily pain and reminders of this condition, I have become very passionate about photography. I have recently started a project where I will be photographing, interviewing and writing stories about our local hydrocephalus patients to share with our community. Along with writing stories about these Indianapolis “Warriors”, I will also be photographing patients, caregivers, and families to capture the people behind our condition. There is more to this life that we are forced to live than just surgeries, shunt failures and hospital stays. I hope that I can capture these stories within these photographs to share with our community of strong and amazing men, women and children, battling this condition day after day, refusing to give up!

Register for your local WALK today!

1 Comments for : Why I WALK – For a Better Tomorrow
    • Patti
    • June 29, 2016
    Reply

    Thank you so much for your enthusiastic view on hydrocephalus. My son has had it since birth and just graduated from high school with HONORS! I won’t say it’s been easy but we do our best in making his life the best it can be. Presently, he is enrolled in college but I’m not sure if he should take off a year or “go for it”!!! Thanks for sharing!
    Patti

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