This week, I’ve been in the arena, battling my way towards recovery after my seventeenth trip to the operating room courtesy of hydrocephalus. I’m thankful, I’m happy, and I’m frankly relieved to be through the worse part of this process, yet again. The surgery was successful and smooth. All of the work that I put into preparing for it in the past few months has paid off, paving the way for what we hope is the best-case scenario in terms of recovery. I literally have flown through this surgery, and I’m looking forward to getting through the recovery as well.
I am never in this arena alone. I have my medical doctors, my rehabilitation and strength team, my mental coach, and of course my friends and family to thank… for standing by my side in all of this, and being relentless in their pursuit of better, always. Thank you. I’m a lucky girl, to have so many amazing hearts, minds, and souls in my corner. Not to mention the unbelievable and surreal support I receive via social media and the blog. This morning, my massage therapist and I realized that on the day that I had surgery last week, I received text messages from three countries, and Instagram messages from seven countries. That just blows my mind. The internet is an amazing thing, but nothing has done more to shrink our globe than social platforms like Instagram, where complete strangers can connect over common ground. Thank you.
Confession: I have a love-hate relationship with Pinterest.
I love it for the vast catalog of mindless entertainment, information and inspiration that it provides. Sometimes I hate it, when my clients bring all sorts of very impractical-and-not-real-life remodeling ideas to meetings. I try to visit the site at least a few times a week - not only to gather information and ideas, but to stay one step ahead of my clients… so I know what kinds of impractical-and-not-real-life remodeling ideas are trending in my future. It’s often during those “research expeditions” that I find that my true inspiration comes from the quotes that people share. I quickly transition from searching home design images, to searching quotes from all sources. I pin quotes from Bible verses to the Dalai Lama, and from Hemingway to Cheryl Strayed. Some are sentiments that make me think, and some make me smile. There are a few that I save to my phone, so I can send them to my friends. Others become journal entries, or inspiration for future blog posts.
Every time I have surgery, I try to come up with a theme for getting through the tough days right after the operation. It’s just something I do… sort of a mental strategy. This time, I decided that each day, I would jump on Pinterest, and pull a quote, and that would become the mantra for the day.
So, in honor of surgery/recovery #17, here are my first seven days of battle, in quotes.
Day #1 - (surgery day) I survived because the fire inside me burned brighter than the fire around me. (Unknown)
Day #2 - (home!!) Because when you stop and look around, this life is pretty amazing. (Unknown)
Day #3 - The moment that you change your perception, is the moment that you re-write the chemistry of your body. (Dr. Bruce Lipton)
Day #4 - Toss your hair in a bun, drink some coffee, put on some gansta rap, and handle it. (Unknown)
Day #5 - Chin up princess, or the crown slips. (Unknown)
Day #6 - (first partial day back to work) Let’s start by taking a smallish nap or two. (Winnie the Pooh)
Day #7 - In the end, only three things matter; how much you loved, how gently you lived, and how gracefully you let go of things not meant for you. (Buddha)
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,
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)
On the counter, there’s a plastic model of a brain, made up of 8 pieces. If he’s running behind schedule, I take it apart while I wait, and put it back together. I reflect on the simplicity and complexity of this incredible organ, and the power it has to change the world. I carefully put the model back together, and my heart aches that my own brain is so broken. Reassembling the parts brings me a certain peace, as if it symbolizes the journey we take, time and time again. If only it was that easy. I sit in the chair next to the exam table, and wait for closure, approval, and comfort.
Then he’s there, and I get the word. I hear the phrase, and I absorb the challenge. Go get stronger. I feel the concern he tries to hide, and I see the urgency that we experience every day. Over the past few years, I’ve learned to read that resolve in his expression. He’s proud of me, and so happy I’m ok— but we need to be relentless in the pursuit of recovery. Stronger. Go as far forward as possible, before we get pulled backwards again. Stronger, so we can face the unknown. Stronger, so I can walk through the valley of the shadow of death, and fear no evil. Stronger, so I can still be Amy when they wake me up. Stronger.
Right now, I am obsessed with gaining strength, because I can feel that there are tough days coming. It’s a sensation I can’t explain, and there are no words to describe the fear I’m suppressing. On the outside, my walls are up, hiding the fact that behind the brick and mortar, the foundations are cracked already, and I am bracing myself for the fall. I lift even when I hurt, and leave the pain on the gym floor. Every day I keep moving, and I keep pushing. I will be stronger - a little bit, every single day.
If nothing else, I will be strong enough to start over, if I have to.
I’ve always been strong enough, in ways the world will not see.
There’s a hole in the middle of my heart again
But I’m not afraid to start again
Start again, I’m gonna start again
There’s a hole in the middle and it never mends
It never mends
But I’ve got to start again
(Conrad Sewell - Start Again)
Follow my #100daysofstrength on my Instagram account @stayinthearena
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.
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,
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,
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.
When the rain is blowing in your face,
And the whole world is on your case,
I could offer you a warm embrace
To make you feel my love.
When the evening shadows and the stars appear,
And there is no one there to dry your tears,
I could hold you for a million years
To make you feel my love.
This holiday season has been a blur, for obvious reasons. I've been embattled with incredible challenge, but showered with relentless support. And I just want you all to know, I can feel your love.
I've received phone calls, voicemails, emails, texts, and social media messages from loved ones and fellow hydro warriors from all over the world. I feel your love.
I've been held in long embrace by dear friends I haven't seen in days, months, and years. I feel your love.
I've been brought to tears by music sent to me by a best friend. I feel your love.
I've smiled and laughed via FaceTime with my three absolutely gorgeous nieces. I feel your love.
I've traveled through the beautiful snowy mountains with my amazing husband, to have the staples from my incision and start our next chapter. United, we stand in battle together. I feel your love.
Always tell the important people in your life that you love them.
Here's to the relentless pursuit of love and life.
Happy New Year.
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 (x31), 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.