Stepping Out of Your Comfort Zone

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Be Brave and Share Your Story!
You Never Know Who Will Step In and Support You

By: Mindy Weinstein

At the age of fourteen, I didn’t want to be viewed differently. I didn’t want to be labeled as “the girl who had brain surgery and almost died.”  Years later, I have tried to change this way of thinking.

Unlike many people who suffer from hydrocephalus, I wasn’t diagnosed until I was a teenager. The signs were there for years: excruciating headaches, nausea and blurred vision. For my parents, though, the diagnosis was still a shock.

Each and every person who has battled hydrocephalus has a unique story and account of his or her struggles. My hydrocephalus story really began in July 1994 when I was finally diagnosed. What should have been an average summer day was anything but. I woke up in the early hours that morning with a headache I had never experienced before. I had other symptoms, as well, that caused my parents to be alarmed. They decided to take me into the local urgent care.

I don’t remember a lot from that day, so most of what I know is based on my family’s explanation. When we reached the urgent care, my father had to carry me, as I had fallen into a deep sleep. Despite the signs I was exhibiting of hydrocephalus, the doctor diagnosed me with the flu and sent my parents and me home. That is when things took a worse turn. I became unresponsive and, call it a parental instinct, but my mother recognized something else was happening. My parents rushed me to the hospital where I was diagnosed with hydrocephalus. My brain had swollen to four times its normal size.

I was fortunate to survive, but I actually look at it as being blessed. At that time, I received my first shunt and the doctors determined I was born with an abnormality in my ventricles, which led to hydrocephalus.

Why Wouldn’t I Shout it From the Rooftops?

You would think that I would have told everyone how it was a miracle I survived and had no side effects from hydrocephalus or the surgery. Instead, I kept it a secret from my schoolmates and went about life as normal.

Fast forward seven years when my shunt failed for the first time. I had been married a month and found myself at the hospital awaiting brain surgery—it was terrifying. Again, I made it through. However, a few months later, the shunt became infected and was removed. We opted for the endoscopic third ventriculostomy (ETV) procedure, but really, we didn’t have a lot of options.

It was an unnerving struggle during those years, because I had many close encounters with death. Even though there was uncertainty whether I would ever be able to have children, I am here almost twelve years later with two adorable sons. My severe headaches are also now a thing of the past.

I Stepped Out of My Comfort Zone

To this day, I don’t talk about my condition often. I have had a hard time shaking the concern of being labeled and I don’t want pity. It wasn’t until last year that my husband pushed me to get the word out about our participation with the Phoenix Hydrocephalus Walk. He encouraged me to post something on Facebook for all of my friends, acquaintances and co-workers to see. He said we needed to raise awareness, and he was right. As a result of that one post, the company I work for, Foster Web Marketing, decided to get involved.

One of my co-workers led the way, as she rallied the office to sign up for the National Capital 5K Run/Walk for Hydrocephalus held in Washington, DC. It was all done without my knowledge, so that they could present it as a surprise to me. I was in tears when I heard the news.

There were fifteen people who ran as part of the Foster Web Marketing team, which included one spouse and three children. They endured the cold weather and laced up their sneakers to run in my honor. While some ran the course, the other amazing members of the Foster Web Marketing team gave their support and cheers from afar.  Foster Web Marketing, along with the individual participants, was able to raise an impressive amount for the Hydrocephalus Association!

Why did Foster Web Marketing jump in and participate in for the National Capital 5K Run/Walk for Hydrocephalus? In their own words, “This is a cause near and dear to us because one of our team members has battled hydrocephalus.” I would encourage other employers to follow the example of Foster Web Marketing and get out there and support your employees who battle hydrocephalus.

My Lesson for You

The moral of the story I am sharing is this: Be brave. Tell others what you have gone through. We all know awareness needs to be raised regarding hydrocephalus. You may be surprised who gets behind you to support this cause!

1 Comments for : Stepping Out of Your Comfort Zone
    • Bonnie Newton
    • November 15, 2018

    Mine wasn’t discovered until 2011 and I was at the age of 50. I had always has co ordination issues, which we all joked about how clumsy I had been , All of my life. I was never on to have headaches, but on October 3rd 2011 while at work, I began to feel nauseated and had a headache. I tried to take a Tylenol on my first break in hopes that it would subside. It got so bad, so quick that I left work and drove myself to the local emergency room to try to get some relief. Needless to say, they put me through the ringer, including an MRI and That’s when the ER Dr. came in and explained that he had found something and would like to have me transported to a better equipped facility and have me checked out. (Had never even had but a basic COLD from time to time, before this). I was transported Emergency Traffic to a hospital an hour away (my first experience in an ambulance) through rush hour traffic. (I was petrified) After being seen in that ER and going through hours of test and MRI’s, they decided that the MRI showed that My hydrocephalus had been present since BIRTH (again, I am, at this time, 50 years old. I too, have the ETV and a reservoir implanted in the right side of my brain. Have had NO issues UNTIL now (57), feeling nauseated and have off days. I don’t like to travel far from home because I get tired or confused easily I have recently filed for disability due to the change in personality and confusion and staying nauseated constantly. Trying to explain how I feel to anyone around me is useless, because they don’t know how it feels and some things you can’t explain. I have ALWAYS been the strong one in my family, held everyone together, always the first yo the rescue of others, a shoulder to lean/cry on; but I am getting to the point that it’s too much anymore to handle. They don’t understand, so they stay away!!! So I “STAND ALONE” and proud and count my many blessings!!!!!

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