Hi love, tell us a little bit about yourself!
I’m Gabrielle. I’m 25 and I was diagnosed with Hydrocephalus in 2016 after two tough years of misdiagnoses.
For those of us who are not familiar with it, can you explain what it is?
Hydrocephalus is a chronic, at the moment incurable, neurological condition that affects the brain. It is a build up of cerebral spinal fluid in the skull causing the ventricles to become dangerously enlarged, causing the fluid to not properly drain to the rest of the body. This, in turn, puts unnecessary and dangerous pressure on the brain and causes it to swell. There are many causes of Hydrocephalus which are either congenital or acquired after birth. I fall into the category of acquired obstructive Hydrocephalus. The only form of treatment is brain surgery.
Having only been diagnosed at age 23 due to an obstruction found in my fourth ventricle, with symptoms ranging from painful headaches, sharp shootings pain in my head to vertigo and a lack of coordination, I consider myself lucky. I have scraped by with only 3 brain surgeries and 1 surgical revision to my shunt within 2 years. This is unlike many in the "hydro community," who are diagnosed at birth or shortly there after and have already faced as many as 100 surgeries by the time they are my age.
The thing that really stood out to us about you was that, in addition to being incredibly honest about your experience on your Instagram, you are also incredibly positive. Do you ever feel angry or frustrated? And how do you maintain such strength and positivity through both the good and the bad days?
It’s very easy to get frustrated and angry when repeatedly dealing with missing holidays, parties, and vacations due to being in the hospital for yet another brain surgery while you should be with friends or family enjoying life. I let go of that anger a while ago. I had to. I started to look at things differently. Each surgery is affording me the opportunity to be present for vacations, family celebrations, and fun times with friends in the future. Each surgery and each recovery is giving me another chance at life. How can I be frustrated at that? It’s the best gift I could be given. That’s how I stay positive everyday. I don’t let the little things bother me because I’m grateful that I even get to experience the little annoyances in life.
After my third brain surgery, I now rely on an imperfect medical device to keep me alive each day. It could fail at anytime, but I love my VP Shunt. It’s affording me the opportunity for a life, a career, and a family someday. Although I do have bad days when the pain from the tube that runs from my brain into my stomach is too much or poking a bad spot or my daily medications aren’t enough to ease the residual headaches, I still deal with it. I simply listen to my body. Easy as that.
That is one of big lessons I have learned throughout my Hydrocephalus journey. I listen and care for my body. Where I used to push myself no matter how worn down I was to never miss a party, a night out, a dinner, anything; now I know my health comes first. When my body needs rest, I rest.
With Hydrocephalus, you never know when the next brain surgery could be lurking around the corner. So when I’m feeling good I take advantage of it and make the most of those days, filling them with fun activities. Self care to me is as equally enjoyable as it is necessary. Though I can’t predict or control how my head is going to feel, I can control how I react and what preventative actions I can take. Whether it be acupuncture, massages, or a relaxing bath at home, taking the time is so important to keep me as healthy as I can in my power.
"Self care to me is as equally enjoyable as it is necessary. Though I can’t predict or control how my head is going to feel, I can control how I react and what preventative actions I can take. Whether it be acupuncture, massages, or a relaxing bath at home, taking the time is so important to keep me as healthy as I can in my power."
Has your relationship with your body changed at all since being diagnosed with Hydrocephalus and, if so, how?
My relationship with my body has most certainly changed since my diagnosis. I know my body has been through a lot the past couple of years and each surgery has taken its toll. I have noticed weight gain and my skin is imperfect, but I’m in no rush.
My self love pinky ring is a daily reminder to be gentle on myself and to know that I’m perfectly fine both the way I am and the way I was. That’s what self love is to me.
"My self love pinky ring is a daily reminder to be gentle on myself and to know that I’m perfectly fine both the way I am and the way I was. That’s what self love is to me."
Due to my shunt tube emptying fluid in my abdomen, I was told by my surgeon, I will most likely always have a “lower pouch." He followed with, “I know, you're young, it’s not something a 25-year-old woman wants to hear.” I don’t mind though. If that’s the worst price I have to pay for getting to now live a hopefully long enjoyable life, so what? I’ll take the pouch and embrace it! I may have a head full of scars, bumps, grooves, and little baby hairs growing back from where my head was shaved before each surgery and an abdomen marked by scars as well, but I could care less about that kind of stuff!
What does your self love pinky ring represent to you?
Blue is the color of Hydrocephalus awareness, so I’d like to think having my sapphire self love pinky ring serves a double purpose. After each of my fourth surgeries I get a piece of sapphire jewelry, so my collection is definitely growing. I wear them proud as symbols of what I have been through and as reminders that I am stronger and more than my Hydrocephalus.
"I wear them proud as symbols of what I have been through and as reminders that I am stronger and more than my Hydrocephalus."
How can others get involved in the fight against Hydrocephalus?
We, as "Hydrowarriors," need more funding for research of better treatment options and, most importantly, a cure! Ways in which you can help include donating to the Hydrocephalus Association which raises money towards finding a cure or one can donate to a Hydrowarriors personal team walk page or registering to walk at one of the various annual Walks to End Hydrocephalus, held throughout the US and this money again goes to the Association where it is used to help find a cure!