While working on a construction site recently, I entered a room with a broken window. Standing back to view the entire panel, I could still see the landscape beyond, even though there were a few spots that were obstructed. The pane of safety glass was held together by design, creating a web of cracks extending from corner to corner. The light from outside was shining through the shattered pieces, and I could see colorful fall leaves in the refracted light. It was certainly not the first time I’ve seen broken safety glass, but I just stood there for a minute and took in the strangely beautiful pattern. 


Looking out that window, I had a profound realization that my brain feels like shattered glass. From the inside, I feel the sharpness of the individual shards, while the world sees the whole picture, with the light filtering through the edges, casting tiny rainbows all around. There’s an invisible force holding it together, like safety glass refusing to fall to the ground. The years of repeated surgeries, shunt malfunctions, and constant pressure fluctuations have left cracked and blurry spots in how I function, rest, heal, and see my battle. But even though my brain is very broken, it’s also fascinating. It’s a prism that is continuously changing, and my life is shaped by how I allow this challenge to reflect my resolve. 


In relentless pursuit, 
Am


For Lauren - Love you…. Stay in the arena.  xx 
​

We may shine, we may shatter,
We may be picking up the pieces here on after,
We are fragile, we are human,
We are shaped by the light we let through us,
We break fast, cause we are glass.
(Glass, Thompson Square)

It wasn’t how I wanted to start my Monday morning, driving to my 8am meeting, with tears rolling down my face. From out of nowhere, this song seems to find a way to surface at the crossroads of my life, over and over. And it hit me like a freight train.


Against the wind
We were runnin' against the wind
We were young and strong, we were runnin' against the wind


The years rolled slowly past
And I found myself alone
Surrounded by strangers I thought were my friends
I found myself further and further from my home, and I
Guess I lost my way
There were oh-so-many roads
I was living to run and running to live
Never worried about paying or even how much I owed
Moving eight miles a minute for months at a time
Breaking all of the rules that would bend


I began to find myself searching
Searching for shelter again and again


As the second verse ended, and the piano break began, I reached over and turned the radio off. Get it together, Am. You’re stronger than this. 


Music has a way of taking me from “barely holding it together” to “completely destroyed” in about 3.7 seconds. It’s always been there to rip my soul from my being, then flood the space that remains. I pulled my car over to gather myself, and looked at myself in the rear view mirror. As I checked to see what the pupils of my eyes looked like, I noted how much my right eye is drooping. It never ends - I don’t get a break from the pressure or the reality, even if the rest of the world and those around me need a reprieve. 


My world is shifting, and my walls of protection have crept back up. Even though that’s a natural reaction to everything I’ve been through in the last 7-8 months, it’s not my intention. I’ve worked so hard this past year to share my authentic self, and face the darkest corners of my vulnerability, and I’m still winning the battle on so many fronts. I’ve taken a break, but I’m going to start writing again. 
And I’m going to go ahead and let the music take my heart, without resistance. 
I’m searching for shelter, against the wind,  and I’m going to heal. 
Feel whole again. 
Trust again. 
Give again. 
Seek peace. 
And I need to get ready… and stay ready. 


I will. I am. 

Life is messy sometimes, friends. Don't let the weight of the yoke determine how far you're going to walk. 

Stay in the arena,
Am

Next week, I will be speaking at the 2016 National Conference on Hydrocephalus, an event put on by the Hydrocephalus Association. I’m so  excited and honored. In addition to participating in a few other aspects of the conference, I have been asked to join a panel discussion on the challenges that hydrocephalus patients face when transitioning from youth into adulthood. The years in which a child becomes an adult bring so many changes - not only in medical care, but sometimes in living situations, schooling, relationships, and/or jobs and career planning. 


Over the past few years I’ve had the pleasure of connecting with many parents of children with hydro, and I recognize that one of my primary roles in this community has been to encourage many moms and dads, who worry about what their little one’s adult life might look like. Even though there are a lot of “high functioning” adults with hydrocephalus out there, I think people have gravitated towards my husband and I because we are active and positive, and very open with my story. Despite the fact that we have had a rough road with my shunt over the past several years, we keep working hard at keeping me healthy and happy. Don’t get me wrong; we are human, and have many frustrations and heartbreak. But we remain a united front, and we refuse to be complacent - instead we take an active and aggressive role in my care, and that has worked well for us. 


Since the Hydrocephalus Association approached me with this speaking topic, I have spent a good deal of time reflecting on my own path. For those of you who aren’t able to attend the conference, I wanted to share a bit of my story, and a few of my thoughts on the subject of transitioning from youth into adulthood with hydrocephalus. 


MY STORY
I grew up in a large family. I’m the second born of seven children. My parents are healthy, but in addition to my hydrocephalus, I have two sisters with juvenile rheumatoid arthritis, which is a devastating illness, as well as a sister who is mentally delayed. My sister Lisa was very sick from birth, and has spent her entire life battling her condition (arthritis) every day, which is very debilitating. As she grew, I watched my parents advocate for her not only medically, but also in school, hobbies, and in life. They relentlessly sought out and tried all types of therapies, searching for solutions for her pain and ways to help her have better function. Most importantly, they never let her believe that she was not going to be able to be a fully functioning member of society. As a result, she grew up to be a confident, social, smart, and beautiful human being. Despite spending at least half of her junior high and high school years laid up in bed recovering from various joint surgeries, she not only finished high school, but she finished at the top of her class - valedictorian. As an adult, she lives independently, owns a home, and has a very successful career. She is my inspiration every day - and the example she sets keeps me moving forward. I’m thankful to my parents for showing me by example how to gracefully navigate life with medical challenges. 


I was diagnosed with hydrocephalus at age seventeen, so I had fully grown and developed before it was discovered. The hydro had gone undetected for an unknown length of time, but it was suspected that it was years, based on the severity at the time of discovery, and the size of my ventricles. (*See “My Story” page for more information on my medical history) As a healthy and active teen who had never had a major illness or medical event, I was instantly thrown into the world of CT scans and MRI’s, hospitals, and ultimately, brain surgery. My entire life was put on hold until further notice, including schooling. Not only did I have to take some time off from high school, but college was indefinitely put off, until my health could stabilize. I was an excellent student and a champion fiddle player, with aspirations to become a professional musician, so I was devastated and totally lost as I tried to grasp the fact that life had just been ripped out from under me. 


Just like they had with Lisa, my parents flew into action, and got me the best medical care they could find. When things didn't work out with one neurosurgeon, we got different one. When I kept suffering from epic shunt failures, they looked for another option, and we found a surgeon who would perform an ETV surgery for me. They stayed positive, and they were always encouraging. But most importantly, they refused to let me wallow in self pity and doubt regarding the whole situation. Instead, I participated in my doctor’s visits, was expected to speak up and answer questions, communicate with my medical team, and make alternative plans for the years that followed high school. If it wasn’t safe for me to move away to college (or Nashville), I was to find a job and start living my life as if it was moving forward. I am forever grateful for the high expectations that were placed on my shoulders, and for the big push in the right direction…. because it made me who I am today. Ultimately, it also gave me better coping skills, and shaped the way I manage my hydrocephalus as an adult. 


My husband Clifton and I have a mission statement; to live in relentless pursuit of everything that’s important. In life, anything you want to accomplish will take a certain dogged determination. This includes love, health, career, and relationships. If you aren’t willing to throw yourself at a goal with reckless abandon, you may never see the full potential of what you desire. As a mentor to young girls who have hydrocephalus, I’ve had this conversation over and over again. There are many paths that lead to success in life. One person’s version of success might be completely different than another’s, but they will take equal relentless effort to achieve. 


MY ADVICE ON TRANSITIONING:

• KEEP MOVING FORWARD - even if it’s baby steps. My neurosurgeon has often told me to “be a moving target” so the hydro doesn’t catch me. Make clear and realistic goals… then push the limit a little bit. Always shoot for something just beyond what you believe you have the ability to achieve. This is what keeps us striving to improve. 

• COMMUNICATE - From the earliest possible age (this is different with each patient), in their appointments, the child should be encouraged to speak directly and interact maturely with their neurosurgeon, neurologist, and other physicians involved in their care. This will start the skills of communication that are necessary as an adult, and reduce the amount of anxiety that comes with dealing with medical professionals - which can be intimidating for many people. 

    **Note: This means when the doctor asks a question, the child             answers - not the parent. This is really hard for most parents, but it is         crucial. 

• ACCURATELY ASSESS YOUR CONDITION - Learn to accurately and consistently track your symptoms. There are many different ways to do this, and it depends on the severity of your case of hydrocephalus. In my case, we do extensive journaling of my day to day headaches, sleep patterns, and workouts in the gym. These are all things that give us major clues when my shunt is failing. If you are fortunate enough to have a low occurrence of shunt issues, you definitely don’t need to do all of that. However, as the child transitions into teen years and beyond, it is crucial to establish a way of keeping track of the baseline, so that if there is a deviation from that baseline, action can be taken. 

• MENTAL HEALTH - Be conscious and vigilant of your mental and emotional health. Over the past couple of years, I have had the pleasure of connecting and mentoring many young women with hydrocephalus, from all over the world. By far, the most prevalent issue that I have seen in all of these patients is anxiety. Hydrocephalus is a condition that brings an underlying level of uncertainty to even the most stable of patients. Thoughts are shaped around the fact that if your shunt or ETV may fail, your life could go into a tailspin at any time, without warning. Then, there’s the trauma of all previous episodes, which can haunt an individual with hydro for years - even if they have been symptom free. My husband and I have taken a proactive and aggressive approach to my mental health - I have a psychologist who specializes in patients with chronic illness/pain that I see when needed, in addition to a general counselor, who has been very supportive to me over the years. It’s important to establish this care even when times are stable - so those relationships are already formed when the storms of life hit. 

• LEARN TO WORK FOR IT - As you transition from youth to adulthood, I believe it is really important to assess the overall health of your body (not just your brain!) and to commit to finding the best fitness level possible, inside and out. This takes a lot of effort, hard work, and determination. Each patient will find a different path to this overall health. For me, it includes nutrition, physical therapy, occupational therapy, massage, meditation, and physical fitness in the form of strength training. Every day I wake to new challenges, but I truly believe that the work that I put in now will pay off later in life. 

• RELATIONSHIPS/SUPPORT - Personal relationships shape the story of your life. No time period is more crucial than the years that you are transitioning from youth into adulthood. Focus on the true friends that are able to walk through the challenges with you. If you have a close friend or two, spend the energy to cultivate those relationships - and don’t let your medical issues dominate all of the conversation and interaction. Friendships are about quality, and not quantity. Making sure that the relationship is balanced will go a long way towards a lifelong friendship. 

I get a lot of questions regarding intimate relationships/boyfriends/girlfriends - because these transitioning years is the time period that those things start to get serious! The advice that I can offer in this department is as follows:

• a) Your significant other needs to truly want to understand your condition, and what the affects/needs are - that can not be taught or forced upon someone. If you don’t feel like you are offered enough support without having to ask for it, you might want to reassess the relationship. 
• b) You should not be made to feel bad if you don’t feel good, or you need to seek medical attention.
• c) If the relationship is important to you, you will have to recognize that the hydrocephalus is going to be a stressor and burden in some ways for your partner. I know that sounds kind of negative, but it’s just reality. The stress may come and go, but you need to acknowledge that that person has committed to standing by your side during these painful and difficult times. Remember to always give affirmation to your significant other for the love and care that they put into supporting you… it will go a long way. 
• d) Establish relationships with general counselors, separately - so that when times get tough or stressful, you have someone you can immediately turn to, to vent and dump off thoughts to - someone other than your spouse. This will strengthen your bond and trust, and give you more security and peace. 
• Once a relationship becomes serious, decide together how involved your significant other will be with your medical care. Does he/she want to attend your appointments? Meet your doctors? Or is it best for you to continue to all of this on your own? These are all questions that are going to be different for every couple. Make sure that you discuss all of these aspects and come to an agreement, so expectations are clear and there are no hurt feelings. 

• HAVE A GAME PLAN - If you are moving from your family’s home, perhaps to college or to your first apartment, it’s important to sit down with your parents or caretakers and come up with a protocol for your medical care, and a game plan for what will happen if you have a medical issue. Be as clear as you can, and talk through as many scenarios as possible. This will make all parties feel more confident, and will soothe some of the anxiety that comes with these big changes. If you are moving away, decide where your medical team will be based, and take the steps to move your case to a new physician, if needed. If at all possible, I suggest doing that before you move out of your parents (or guardian’s) house. All of the appointments and paperwork that can come along with changing doctors can add a layer of stress to a time in your life when you are already adjusting to many new aspects of taking care of yourself. 

In closing…. Hydrocephalus often leads us down a very difficult road, but love and life are well worth the battle - and it’s our choice to keep the wheels turning. If you have goals, believe in yourself - that you can and will do whatever it may takes to reach that success. If you are willing to work towards these goals in relentless pursuit, I BELIEVE IN YOU. I believe that you will persevere, overcome obstacles, and be the best version of yourself. 


#stayinthearena 


All my best, 
Amy

Photo: Lauren Rodrigues, one of my hydro girls, and I - Lauren is currently in her freshman year of college, and just got into nursing school! 

This morning, the spring rain is falling here in Oregon, washing the landscape and cleansing my soul. It’s been an interesting couple of months. I’ve been retreating a little bit - pulling back, processing, and preparing myself mentally for the road ahead. After several months of spilling my thoughts and sharing my journey every week, I’ve needed this time to rest and remember who I am. In this period of stillness, I’ve had a chance to reflect on where I’ve been, and where I’m going. 


One year ago, the focus of my treatment shifted, and my life changed forever. Under the guidance of my OT/PT, we began to address the current condition of my central nervous system (CNS), and the trauma that has resulted from over ten surgeries on my brain in just a few short years. Until that point, the sole focus of my medical team had been on my hydrocephalus, and my shunt. The shunt has always been the cause for the concern, the pain, and ultimately, all the brain surgeries. Unfortunately, we can’t do anything about the fact that my body needs a shunt, but hates it. At this point, I’m only averaging 3-6 months in between surgery episodes. So when my therapist told us that we would be treating my pain by working to soothe and heal my nervous system from the trauma of repeated surgery, it was a new way of thinking. In a nutshell, hydrocephalus can not be healed, but trauma can.  


Trauma comes in many different forms- physical, psychological, and emotional. Brain surgery several times a year has put my nervous system through a firestorm of trauma - from the anesthesia, medications, and the physical wounds of surgery, to the emotional roller coaster and the mental exhaustion of simply trying to get through the episodes without complete system meltdown. The nerves and muscles in my face, my inner ear, and vestibular system have all been rocked and damaged. The physical symptoms of PTSD have also become more pronounced as each surgery passes. But most importantly, my CNS gets stuck in sympathetic response (commonly referred to as “fight or flight”). As my brain reels from trauma after trauma, my system is subconsciously guarding itself from further harm, at all times. This heightened state of awareness affects my sleep, breathing, and my ability to heal. The main focus of my therapy and rehabilitation this past year has been to assist my body in getting out of sympathetic response, and into parasympathetic response (rest and digest mode). Honestly, it’s very difficult. I had no idea that my brain was so damaged, and I was unprepared for how terrifying the process of unearthing all of the suppressed trauma would be. My brain only responds to certain people and in certain environments, and only lets go when I am safe, and completely fatigued, neurologically. I’m not sure if I will ever feel comfortable with this, but I know that I have a new respect for what I’m going through every time I have a shunt malfunction or surgery. After working on rehabilitation with this focus for just a year, I’ve realized that it is going to be one of the key factors in my success, for the rest of my life.


In 2015, I had a total of four surgeries. On paper, it was the worse year we’ve had with my brain to date, medically. However, by treating my CNS to heal the trauma after each surgery, we have been able to keep on track with the strategies that have historically allowed me to combat my hydrocephalus successfully. I’ve stayed active and strong, worked full time, and maintained the stability that I have strived so hard for in the past few years. While this has been one of the hardest years of my life, it’s also been one of the healthiest, and one of the happiest years. My mental perspective has also changed as my medical reality has evolved. I’ve always been a fighter, but now I know that I have to make an active choice to be well, and that only I can put in the work necessary to make that happen. It’s a daily challenge to to reach deep inside myself, choose to let go, and trust this painful and frightening process.


My current shunt is five months old. Sometime around the beginning of March, my pain spiked, and we began the all-too-familiar process of trying to right the ship to avoid the inevitable. We’ve tried everything. 
I’ve rested, and I’ve pushed. 
I’ve medicated, and I’ve detoxed. 
We’ve adjusted, and we’ve waited. 
I’ve got pages and pages of journaling and documentation of previous shunt failures, and treatments and tricks that have helped. In the past two months, I have poured myself into those logs - seeking anything that seems like a repeated pattern, and trying everything I know to do. And, in the end, we fought a good battle, and I’m proud of where I am. I’m strong, I’m at peace, and I’m ready. But there is nothing left to do, except to replace the shunt valves and start over. 


I’m committed to finding the clearest path for my brain to travel, while it processes the trauma that I’m about to add to my system. This is about the physical aspects of recovery, but it’s also about mindset. It’s about being a fighter, but not fighting the process. It’s about trusting my team, and myself. And it’s about taking the shortest path through the shit, which is unfortunately straight through the shit. No detours. 


There is no greater gift than for someone to care for you so much, that they are willing to get down in the trenches of life with you in your darkest hour and weakest moments. You look them in the eyes, let them see your pain, and are comforted by their presence in these moments of transparency. I’ve said this before, but I am unbelievably blessed by those who hold my heart. My  family, my friends, and my community surround me, covering me in love, encouragement and prayers. I’m not alone, and together we stand in this battle. That's the truth. 


Let’s do this again. We’ll hit the reset button, and show the world that we will be ok. 


Surgery #15 - scheduled 5/25/16


#stayinthearena


Much Love, 
Am

​

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