Last Thursday morning, I was sitting in an early morning meeting at work, and suddenly, my phone started going crazy - buzzing with multiple notifications at a time, and continued for about 10-15 minutes. When the meeting had finished, I took a look at what all the commotion was about, and I smiled. The Hydrocephalus Association had officially announced on social media that I have been asked to speak at the upcoming 2016 National Conference on Hydrocephalus, in Minneapolis in June. Judging by the constant stream of notifications, messages, text, and emails, people were pretty excited! It's a huge honor to join the staff and all of the other inspiring speakers, and to continue to have the opportunity to connect with other people who are navigating life with this condition. I am humbled and a tiny bit overwhelmed by all the outpouring of love and support. And I am thankful for the opportunity to meet so many of you in person.
Registration is now open! There are many options for attendance, and even some financial assistance available. The conference is held every two years, and the location rotates from east coast, west coast, and middle of the country. If you are somewhere in the middle of the states or Canada, this might be the closest it comes to you for a while. Clifton and I were blessed to attend the last conference when it was really close to where we live, and that experience had a lasting impact on me. Seeing all of the children and meeting other hydrocephalus patients in person changed my life, and is one of the main reasons we are doing the advocacy work that we are doing now.
Since this announcement last week, I have had a few common questions:
Clifton and I wrote a short review of our experience at the 2014 Conference in Portland, and it's on the Association's blog, but I wanted to also share it here:
Traveling a Parallel Path
My name is Amy Booher, and my husband Clifton and I attended the 2014 National Conference on Hydrocephalus in Portland, Oregon. I was diagnosed with hydrocephalus at age 17, but this was our first time attending the conference. We were really excited to learn more about the available technologies and treatments, and connect with other families and patients with hydro. We had a fantastic experience, made new friends from all over the country, and were able to make face-to-face relationships with the staff of the Hydrocephalus Association. At the conference, we found a company that has an anti-siphon device that we had never seen before. After taking that information back to my neurosurgeon, I had one placed in my next surgery – something that has improved the quality of my life.
In the past year, I have launched a website/blog about my journey living with hydrocephalus, and I am excited to share what I learn at this year’s conference with the people from all over the world who follow our story online. Above all, I feel that the most important aspect of this event is the opportunity to connect people who are all traveling a parallel path. Clifton and I especially enjoyed watching all of the kids that attended. Seeing them laughing and freely expressing themselves was so amazing.
Daily life with hydrocephalus is challenging to navigate, and knowing that you are not alone is comforting. You can find more about our story on my website, www.amybooher.com or on Instagram @amy_booher. Here’s to another great conference, and here’s to the relentless pursuit of everything important.
Clifton & Amy Booher
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.
Recently, I came to the conclusion that living with hydrocephalus is like riding a roller coaster. We spend day after day wondering if my current shunt is working, recovering from the latest greatest surgery, riding the waves of pain that come with the ever-changing pressure inside my skull- which is affected by every single aspect of life itself. When the pressure doesn’t cause the pain, the physical trauma from multiple surgeries a year does. I never know how I’m going to feel from hour to hour, minute to minute. Sometimes I’m doing well, and we are incredibly happy, but when I’m doing poorly, we are so low.
The medical aspect of life with hydrocephalus is not the only roller coaster. Many of you can relate to the emotional and mental ups and downs that I’m referring to… where you simply hold on for dear life, and hope you’ll survive the adventure with as much of your psyche in tact as possible. The months get counted as victories, as we hold our breath in between failures, like giant swells on the twisting, turning, terrifying ride of my life. It all goes fast- really, really fast, and feels completely out of control at times. So many hydro patients and caregivers suffer from anxiety and depression as a result of the uncertainties of this path, and it’s easy to understand why. I believe that the mental and emotional roller coaster can be ultimately more damaging than the physical journey.
A few precious people are riding this roller coaster with me, and there are lots more supporters standing close by, watching us scream our way through mid-air, strapped to hospital beds and MRI machines like they are seats on the twister. Sometimes we cry in fear, and sometimes our breath is simply taken away by the sheer force of gravity. In the end, we all get through it together, but it takes it’s toll on everyone.
The irony is that I know that riding a roller coaster is a horrible idea for me. It’s hard on my brain, which is already stressed out, and even the gentle G force of a swing set leaves me dizzy and off balance. So, if roller coasters in the literal sense are not good for me physically, what about the other types of roller coasters? The mental and emotional highs and lows do the exact same thing to my nervous system as the physical affects of a carnival ride. Heart rate and blood pressure rise. ICP is affected. Tension comes in the form of headaches and other neuromuscular pain. My PTSD symptoms flare up and are increasingly difficult. All of these things wreak havoc on my central nervous system, and I have come to understand the negative affect that it has on my physical healing and recovery.
The year I had medically in 2015 was the epitome of a roller coaster ride. In addition to the issues with my shunt and the four surgeries that followed, my job was incredibly busy, and at times I was overly critical of myself when I had trouble keeping up with my work and personal life. However, I’m doing a lot of work on my mindset, and something is starting to shift in my heart. Only I have the power to experience the roller coaster differently. I know it’s always going to be there, and I might be watching it, but I’m not actually obligated to ride it mentally and emotionally. At this point, I don’t want to participate in the drama. I want to approach my life, including my battle with hydrocephalus, at a steady pace, staying under the threshold of chaos inside my mind, which will then keep my body more calm and rested.
A large part of this it that I’m starting to see and feel myself separate from my illness, and from some of the other stressors in my life. Even if these difficult situations are still present, I’m not identifying with them the same way. They are my experience, not my identity. I am not hydrocephalus; I have hydrocephalus and I am managing it the best I can. I am not a stressful project; I am Amy, and I organize a circus of stressful projects at times.
I’m also actively working on seeing my relationship with myself in a better light. Historically, I have been painfully hard on myself, and have super high standards of expectation. Don’t get me wrong - I don’t want to lose my passion, or the fire that drives me, and connects me so strongly to the people I come in contact with. But I understand that I must learn to experience life from a different perspective, because otherwise, I’m going to crash and burn.
So, this is my confession, my awakening, and my vulnerability - all in one. I’m working on taking things a day at a time, a surgery at a time, and trying to learn to stay on the sidelines from a mental standpoint. I’m trying to rest when I need to rest, unplug when I need to unplug, and editing my thoughts, worries, and expectations. I know this will calm my nervous system physically. And at the end of the day, I know I’ll have more emotional peace; which ultimately is the true relentless pursuit.
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 (x21), a fiddle player, a construction designer, and a boxing enthusiast. I have six real siblings, and five fake brothers. I love deeply, and consider my close friends to be family.