Follow my #100daysofstrength on my Instagram account @stayinthearena

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. 

​Amy

On New Years Eve in 2014, I posted a collage of photos on my Instagram account, along with this message, “2014 has been a beautiful mess… full of love, laughter, and challenge. Happy New Year, and bring on 2015. Here’s to the relentless pursuit.” And for the first time, I followed that post with an anchor, and a blue heart.  

From that point forward, almost every Instagram post I’ve made pertaining to hydrocephalus includes an anchor and a blue heart emoji. I started adding those symbols to the messages and comments I sent to other patients and parents of hydro warriors, as they prepared for surgery, battled headaches, or just needed a little love. And slowly but surely… I started to see them show up in other people’s posts and messages…the unofficial “logo” of our little community of online support— a way to let other people know that I understand what they are going through, encourage them to stay strong, and to let them know I’m here for them. 

For me, the anchor represents strength in the midst of chaos, hope, love, and solidarity. The anchor also references our constant battle with water - the water in our brains. The blue heart is a symbol of community; a bond that comes from walking a parallel path of struggle. It means that I see your fight, I support your spirit, and I believe in your ability to rise. 

Over the past year, the anchor has become what people close to me associate with my journey through repeated surgeries and recoveries. I have received cards, gifts, and jewelry with anchors and hearts… all of which I have loved and cherish. Every day I am surrounded by these reminders of love, compassion, and security.

I am continually amazed by the supportive community I have discovered via social media. On Instagram, I communicate regularly with hundreds of people from all over the world, who have experienced similar hardships from life with hydrocephalus, and other brain conditions. Over and over, I’m inspired by how willing they are to reach outside of their own pain and struggle, and lift up people that they may never have the opportunity to meet in person. There is no more important gift you can give another human, but to offer connection and let them know that they are important, you see their struggle, and that you are there for them.
This weekend I got a tattoo of an anchor, to serve as a constant reminder of the loves in my life who anchor me through the storms, but also to pay homage to the incredible community of people battling hydrocephalus— who have rallied around me, pushed me through challenging times, and inspired me to share my story with the world. 
Here’s to the the relentless pursuit, my friends. 

Much Love,
Am
​Instagram: @amy_booher

This morning I woke up to an interesting milestone… 1,000 followers on Instagram. 

In comparison to many of the fitness, golf, and nutrition IG accounts that I actively follow, 1,000 is a very small number, but for me, Instagram is where this public journey started. It’s never been about the number of people who are reading and watching my story from afar. I am humbled and inspired by all of the friends I have “met” online - so many beautiful, kind, brave souls. Some share similar health battles, and others have the same hobbies and interests - but they have simply reached out to connect, and the support I have received through the power of social media has been an unexpected and amazing blessing. Over the past couple of years, the most incredible friendships have formed with people I may never even meet in person, due to geographical distance. 

I wasn’t always open to sharing my life with the world. I was diagnosed with hydrocephalus at age 17, and lived with it for over a decade with almost no one other than my family and close friends knowing. I kept it quiet, mostly because I believed that nobody really wants to know if someone is sick. Then, in 2013, I was seeing a psychologist who specializes in patients dealing with chronic illness, and he suggested that I start blogging to share my story with other people. I cringed at the thought, and resisted big time. His point was that there were thousands of people out there that were dealing with similar circumstances, and that it could be a positive experience for me to connect with those people. The vulnerability of allowing people to see this part of my life was really scary for me, but eventually I agreed to give it a try. 

I decided to start by using some hydrocephalus related hashtags on my existing Instagram account. I slowly began to integrate my story into my online presence, and I was shocked that almost instantly I connected with other people who had parallel paths. I was able to support a few of those first connections through their diagnoses, shunt placement and ETV surgeries, revisions, and daily life with hydrocephalus. In turn, they supported me as I began a barrage of shunt revision surgeries that has not let up for three years now. Over time, the number of people following my Instagram account due to the hydrocephalus related posts has grown by the hundreds, and many of those people are either hydro patients themselves, or parents of kids who suffer from this condition. 

It took me some time to realize that the doctor was right. While there are certain circumstances and situations in life where keeping your personal or health battles private is beneficial, and even necessary, there is also value in allowing people in. For me, this is an ongoing process of growth - and one that I am not even close to having a grip on… but this road has changed my life. As a result of being more open, I see myself and my journey differently, appreciate my strengths and recognize my weaknesses, and have been inspired to take the next steps in public advocacy for hydrocephalus…. including the launch of this website and blog. Two years ago I began to actively communicate and mentor young women who suffer from hydrocephalus, and have become more involved in raising awareness for ways to live positively with the challenges that hydro can bring to one’s life. I see myself as unbelievably blessed, despite my pain and surgeries, and I want to share the fire that I have to fight through the bullshit. I constantly try to encourage other patients to push themselves towards better overall health, mental strength, and self care. 

Although the internet provides a vast source of information and opportunities for contact with like-minded people, you have to be very careful about where you are getting your information. A great example of this is something my husband deals with constantly in his career as a firefighter/paramedic. Almost every shift, he goes on patients who have called in because they looked something up on Google, and they are certain they are having a major medical event. I recommend only obtaining medical advice from your own physicians, or a reliable source such as the Hydrocephalus Association’s website. And the same goes for social media; be mindful that so much of the input and posts about hydrocephalus may be negative, and try to gravitate towards accounts that encourage you to live a more positive lifestyle. Some of my best connections have come from meeting other people who have the same approach as we do. I’m definitely not alone. There are others out there who are pushing for better, searching for solutions, and living a beautiful life in between all of the crazy surgeries and drama. These people push me, support me, and inspire me to keep going. 

I had my last two surgeries on December 10th and December 16th. That week, I received hundreds of messages of encouragement from all over the world… including Australia, Italy,  Denmark, England, Canada, and all over the United States. A couple of weeks ago I posted an article on this blog that was viewed over 2300 times in the first weekend, and shared all over Facebook. It’s still tough to grasp that my willingness to share this difficult and painful part of our lives has impacted so many strangers, but it goes to show how much need there is for positive role models in hydrocephalus, and many other conditions. Not everyone has the ability to be open, because it is really hard. I challenge people who choose to share to reach out and form those bonds with people - you never know when you might be providing the encouragement that is getting the someone through a difficult time. 

The ultimate human need is for true connection with other humans. Thich Nhat Hanh teaches that the most important thing you can communicate to another person is this: “Darling, I am here for you.” In closing, I think that is what this is all about… Just knowing we are all in this together makes it a little easier to get up and fight every day. 

Open up, Buttercup. 

In relentless pursuit,
Amy
@amy_booher on Instagram