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
In the months since launching this website, I’ve received hundreds of emails from other hydrocephalus patients, family members, and supporters. The overwhelmingly common theme of these messages has simply been “how do you cope with the frustration?” Truthfully, I really don’t have a good answer for this question. I can only let you know that if you are dealing with the aggravation, discouragement, and fatigue of life with hydro (or any other illness, for that matter), you are not alone - and I am definitely no exception; I am frustrated too. Clifton and I have put ourselves out there by sharing our story, and one of our big messages to the community has been to take an aggressive, proactive, multi-disciplinary approach to overall health - and to work as hard as you can to control the factors that you can. But sometimes, you just have to let go, stop trying to fight at every single turn, and just trust the people around you to catch you as you fall into their arms - literally and figuratively.
So, this is where I’m at. Since my last blog post a few weeks ago, we have been re-grouping and making some adjustments to my overall rehabilitation plan. I’m four months post-op now, and while I am physically the strongest I have ever been, and emotionally I am happy and at peace, my headache pain is once again off the charts - and the decision has been made to try to let my brain rest a little bit, while we have the chance. Even though I’m in pain, my medical team doesn’t have reason to believe my shunt is failing, so now is the time to take these steps back. On one hand, I’m relieved and content to wait it out for a while, just treat the pain as I can, and live my life quietly - outside the arena. I need the rest, especially since I haven’t had the best track record for time between surgeries these past few years. But on the other hand, it’s frustrating and disheartening, and it’s definitely not my nature sit out of the battle, and not push for constant improvement. Pain is a lonely island - especially when you are well enough that the outside world believes you are completely “normal”. Let’s be honest… I’m basically the queen of “fake it ’til you make it”.
However, I need this right now.
I need this time to walk alone and reset my resolve.
I need this time to pull back and start over.
And my brain needs a minute.. or a few weeks.
There is a Matthew Perryman Jones record that I’ve had on repeat the past couple weeks, called Feels Like Letting Go. It pretty much sums up how I’m feeling.
Oh my love
help me open my heart again
tear it open let the rain fall in
wash this hardness underneath my skin
Oh my love
let me hear your voice come through
I wanna know the love inside of you
make this dark heart believe in what is true
I know that in the dark there's a fear of letting go
I know that in my heart that I fear what I don't know
and this feels like I'm letting go
and this feels like I'm letting go
I'm letting go
If you follow this blog or have read the content of this website, you know that music is a crucial part of my life, and my recovery process. Although I’ve been a musician for most of my life, it wasn’t until this past year that I learned the profound physical affect that music and rhythm can have to soothe the central nervous system. Music also has a powerful way of putting words and melody to emotions you can’t otherwise explain. On my Instagram account, I regularly share music that I’m listening to, and I am starting to create and share #musicheals playlists on my Spotify account, because I believe that music is both a language and a fellowship, and it is created to be shared.
I hope that wherever you are tonight, you can be still, breathe, and listen to some music. We’re all in this together. Stay in the arena when you can, and take a break when you need to.
In relentless pursuit,
In the summer of 2012, I was healing from my shunt re-placement surgery, and was encouraged by my neurosurgeon to work on my physical fitness, and specifically to get my body fat percentage down. I was not terribly overweight, and had never been concerned about body image, so I was hesitant to work with a personal trainer. In light of the challenging physical condition I was in at the time (no strength and zero balance!), working with a trainer could have easily been a disaster, if it wasn’t the right person. Clifton met Joe Locascio, at trainer at our gym, chatted with him a bit, and felt like he was a good match for me. Trusting my husband’s judgment, I went forward - and he was right, Joe was absolutely the right fit, wasn't intimidated by my hydrocephalus, and really wanted to help us. The relationship that formed those first few difficult months resulted in an amazing friendship, and ultimately led to some pretty significant changes in our lifestyle. The strength training and balance work that I started with Joe also led to the current training I do at Courthouse Performance Training here in Salem, Oregon. Being physically strong has been a game-changer for me, and as you all know, is a major component in how we prepare my body for the battles of surgery, and rehabilitate it after the trauma. But the guidance and advice he gave us regarding my nutrition was the most important thing I took away from the training, and started me back on the road to overall health.
Joe introduced me to the concept of an anti-inflammatory diet, and I began to learn about the Paleo lifestyle. Eliminating grains, processed sugar, and processed dairy from my diet greatly reduced the stress and inflammation in my body. I found a lot of great resources and support online, and purchased a book called Practical Paleo, by Diane Sanfilippo. In this book, she outlines different protocols based on your specific health goals, and there was a section on Neurological Health. I was fortunate enough to meet and connect with Diane at a book signing in Portland, and she and her team have been so supportive and gracious to me.
Two years ago today, Diane featured my story on her nationally recognized Paleo blog, www.balancedbites.com - The feedback I received from the article was amazing, and it was the first time that I realized that I could impact other people by sharing what had helped me to manage my hydro. So, here we are, I now have a blog of my own… I really want to thank Diane for the inspiration she gave me to give back, and all of the incredible connections I have made in the Paleo community due to her featuring me on Balanced Bites.
As a result of these changes we made to my diet, and my strength training with Joe, I am a completely different person physically. I lost over 50 pounds of body fat and gained 10 pounds of lean mass (muscle) in the first year, and went from a size 14 to a size 4 in just 9 months. It was a drastic shift, and I know that being in better shape has made a big difference to reduce how hard my body and brain have had to work to get me through the repeated shunt surgeries. My neurosurgeon has been very supportive of this anti-inflammatory diet, as he believes that it assists my body in healing. I encourage everyone to look at their nutrition as a major component in the management of hydrocephalus - as what we eat and drink not only affects healing after surgery, but it also directly affects our production and absorption of CSF. Consult with your medical team to see if the Paleo diet or something similar could be a benefit for you! You can also check the Treatments & Therapies page on my website, and the Resources page - for more information and links.
It’s important to be willing to do whatever it takes to keep moving forward. For me, being strong and eating right helps me to feel like I’m staying “ready” for whatever lies around the bend. I might not be able to control what happens with my shunt, but I can work hard to keep the rest of my body healthy and happy… Which means I lift kettlebells and eat bacon on a regular basis.
Stay in the arena.
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.
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.
The yellow post-it note on my mirror this week says "just because it's hard is not a valid excuse". We are six weeks into my latest recovery. Overall, the recovery from the back-to-back surgeries I had in December has been one of the easiest we've had to date. I was strong, I bounced back pretty quickly, and my wounds sealed up beautifully. But the past two weeks have been pure hell.
Why is that? Who knows.
...Because it's brain surgery?
...Because I had two brain surgeries in less than a week?
...Because I had a seizure in recovery and they put me on medication that makes me feel terrible?
...Because I'm just exhausted from pushing so hard?
...Because (contrary to popular belief) I am NOT Superwoman?
All of that.
It's really hard not to dwell on the fact that something might be wrong. It's almost impossible to be in this much continuous pain so soon after surgery, and not wonder if this revision is not going to hold for longer than a couple of months. But ultimately, I have no control over any of that. Sometimes all you can do is just get through the shit, one day at a time. Sometimes, one hour at a time. You just have to trust what you know, and stay the course. I've been working, and this week I was able to get to work every day. I've been putting in my rehabilitation time, and this week I made it to the gym twice. I'm resting when I need to rest, eating the best I can, and doing everything I can to right the ship.
And at the end of the day, that's all I can do. If I do everything I can, and my body still decides it doesn't want this shunt, I'll know I left nothing in the tank. Stay in the arena, my friends.
Sometimes the arena is where the magic happens.
Last month I had my #13 and #14th hydrocephalus related surgeries. Nine of these 14 surgeries have been since 2012, and every one of them have come with unique circumstances and challenges. Even though my husband and I have always tried to take them in stride, we make a vow to change or learn one thing each time that might make the process a little bit easier. Some of these things have been really practical, and other things are simply for comfort. We want to share some of our routines with you all, in hopes that they might help anyone else out there who is dealing with a lot of hospital stays and surgeries.
Live and love between the madness.
Here’s to the relentless pursuit of everything that’s important.
Stay strong, my warriors.
Very few people are just born with the ability to bounce back from adversity, with relentless tenacity. To laugh in the face of challenge, and scoff at the idea of giving up. Instead, choosing love so hard and play with so much joy, that the world looks at them with a certain level of envy... despite the unbelievable circumstances they wake to every day.
My sister Lisa is one of those people. She is an absolute fucking champion. She wakes each day to reality and pain most of us would crumble beneath on our best day -- and smiles, laughs, loves, and gives - more than most of us do on our best day. She's never allowed her physical condition to hold her back from having beautiful relationships, crushing her goals, and just being a general all-around bad ass.
When we were growing up, she was tiny. The juvenile rheumatoid arthritis that she was born with stunted her growth and twisted her fragile little body. I, on the other hand, was strong and tall. At 22 months younger than me, she was about half my size by the time we were in grade school. So, I carried her on my back, everywhere. To the school bus stop, at the grocery store, on field trips for school. Piggy back. It never crossed our minds that there was anything unusual about this. It was the easiest way to help her keep up with everyone, and keep her safe.
At the time, it seemed totally natural for me to physically carry her. I could, so I did. Neither of us had any idea that inside my brain, something wasn't right, and that later on, at age 17, I would start my own physical battle. And Lisa might still have no idea that in the years that have passed since my diagnosis with hydrocephalus, it is she that has carried me - not physically, but mentally and emotionally. It is she who has taught me to fight like a girl, and to never give up. I think of her when I don't feel good, when I don't want to go to work, when I don't want to lift weights. Her tenacity to survive multiple joint replacements and reconstruction surgeries reminds me that this is totally doable, even when it sucks. It is her open heart and loving soul that has taught me to enjoy all the good things in life, and that sharing your life with other people can push them along in conquering their own struggles.
Thanks for carrying me, Lis. You are my hero. My true relentless warrior.
I love you more than peanut butter loves jelly.
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 (x29), 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.