Three months ago, I launched this website/blog, with the hopes of reaching as many people as I could to spread awareness for hydrocephalus, and to provide support to patients and families who are also fighting through the ups and downs of life with this condition. I’ve been overwhelmed and humbled by the amazing number of people who have viewed the site, and reached out to me to share their own stories with hydro, their struggles, and their hopes for a good life.
When I began using Instagram as a platform a couple of years ago, I had no idea that it would lead us to the point we are at today. The internet is a strangely vast and wonderful resource, but it’s also a scary and unrealistic place. Using social media, you can create a public version of yourself that is beautifully crafted; shaping the way you want the world (both friends and strangers) to see you. Through the rose colored lenses of photo filters, inspirational quotes, and smiling photos of evenings out and sunny vacations, a one-sided view of the world comes into focus.
Please don’t get me wrong, because I am definitely not against positivity. We all know that there is way too much negativity on social media and on the internet in general, not to mention in the world around us. I have deliberately made a point to have a generally positive image on Instagram, not only because I believe that’s what Clifton & I strive for in life, but also because there is a need for positive role models in the hydrocephalus community. I try hard to focus on the quality of my life in between shunt failures, and not the horrible circumstances that come along with having brain surgery a few times a year.
The ups and downs of my last nine brain surgeries, and the recoveries that followed, are well documented on my Instagram account, and now this website. I share as much as I feel is appropriate, because my story has been a vehicle by which I can reach people also connected with hydrocephalus. My hope is that they see that I’m a real person, with real struggles, and a super stubborn spirit that has pushed me through this journey with a certain level of success. I’m thankful for social media, for the opportunity to reach this community. However, it’s important to us that the public perception of me is accurate, and that my message as an advocate for hydrocephalus is as realistic and raw as I truly am - because how “easy” I make it look can be misunderstood by people who only know me in the capacity of Instagram. Through my website and blog, I have received hundreds of messages and emails from people all over the world who are suffering through hospital stays, multiple surgeries, and terrifying physical symptoms related to their ongoing battle - or their child’s battle with hydro. In a way, I have become somewhat of “a voice”, especially for those parents, many of whom are troubled because they do not have a way of knowing what it feels like, or where to start in creating a life for their child with this condition. I take this all very seriously, and want to help, not hinder, those who see me and follow my story for encouragement, information, and support.
Yes, I have a wonderful life - a loving husband, an adorable dog, and an incredible network of friends and family. I have the most dedicated medical & rehabilitation team a girl could wish for. I’m thankful for every minute I breathe, every person I have the honor of loving, and every beautiful song I listen to. But I also have to physically, mentally, and emotionally push myself through some very dark days, just like everyone else. I suffer from a great deal of daily headache pain, and I have a lot of trouble with my nervous system being in a chronic state of sympathetic response, due to the repeated trauma of surgeries. With this comes PTSD, which causes me to not feel like myself for a period of time after procedures - and is probably the most disturbing and scary part of my journey.
Over the past year, I have been on a mission to bring a certain level of authenticity not only to my online presence, but to my face to face relationships as well. I’ve always had a hard time letting anyone know that I am in pain, and I tend to guard myself from people seeing the mental effort it takes. Vulnerability is definitely not my strongpoint. But every single time I have hesitated before posting something to this blog, I have received stunning email messages that absolutely, without a doubt, tell me that I was supposed to share.
What do I want people to know about me, about who I am, and what my experience looks like in real life? I guess I really want everyone to know that I believe strongly in putting in the work. My parents taught me from a young age that if you want anything in life, you have to be willing to grind through what it takes to get there. My husband and I have taken a multi-disciplinary approach to my health care, which takes a lot of time and effort, but is also really difficult to actually go through. We travel hours away to physicians that we believe are the best match for me. I push through several days/nights a week in therapies and in the gym for rehab, because staying strong has been a big component in my success. I also continue to work full time and maintain a social life, because I believe that the balance keeps me going.
Sometimes I feel strong, and sometimes I’m completely overwhelmed by the tenacity and responsibility it takes to stay the course, and do what I know will ultimately help me. Doubt and insecurity creep in, as the surgical procedures pile up, and the time in between gets eaten up by the chaos in my traumatized brain. Although I’ve never been afraid of hydrocephalus, the surgery, or the pain, I constantly have to push away the fear of my health slipping. A select few people see the unguarded, rawest, brokenhearted moments, and the rest of the world sees the fighter. And I need both - I need the ones who hold me tight and put the pieces back together, and I need all the other people who cheer me on as I enter the arena again and again.
So, what does it take? I’m still learning the answer to this question, but here is what I’ve found. It takes bravery. It takes understanding what you’re up against, believing that you’ll get through it, and wanting that more than you want to stay in the safe zone. It takes learning to handle yourself when life isn’t perfect and you’re in pain. It takes relentless pursuit of new solutions to all of the challenges that living with any illness brings to the table, including pain, anxiety, and depression. It takes connection. It takes knowing yourself, trusting those who are close to you, and believing in those who are taking care of you. And it takes hard work; lots of really hard work. But it’s possible - and only you have the power to create what your version of what success looks like.
That’s the real story.
Stay in the arena…. it’s where the magic happens.
My name is Amy but friends and family call me Am. I am a lover of dogs, good whiskey, and strength training. I'm a brain surgery survivor (x17), a fiddle player, a construction designer, a boxing enthusiast, and I wish I was a better golfer. I have six real siblings, and four fake brothers. I love deeply, and consider my close friends to be family.