​I was lying in a hospital bed on Easter morning, watching the live stream of the service at my home church in Monmouth, Oregon. As my pastor Joe opened the Easter program with a prayer asking God for my comfort and healing, I couldn’t hold back my emotions. I was 150 miles away and in so much physical pain that I could hardly move – not to mention I was still in complete shock from the events of the previous 24 hours. Tears rolled down my cheeks and I closed my eyes. 
 
What happened?? How did this happen?? 
Just 48 hours earlier, I had been completely fine. 
 
I’ll rewind a little bit to catch you up… just in case you don’t follow my story on Instagram. 
 
On April 11th, I had a shunt valve replacement surgery after several months of struggling with nausea and fatigue symptoms. Everything went as planned, the surgery was fairly easy, and I had immediate relief. I was happy to be past all of it again and was determined to get things back on track. 
 
I went to my post-op appointment in Bend on April 19th feeling good. My neurosurgeon was really happy with how I looked and felt but decided to leave the staples in my head incision for another week just to be safe. No alarms at all… all of this is pretty normal. 
 
Since my neurosurgeon is 3 hours away from where I live, I decided to stay the night, and it turned out to be a really good thing that I did. While I was sleeping, my head wound started leaking significantly, and I woke with a soaking wet head of hair at 3am. I’ve never had a CSF (cerebral spinal fluid) leak before, but I knew immediately what was happening. My friend took me to the emergency room, where X-rays were taken, I was evaluated, and my head was stitched back up like a baseball to stop the leakage for as long as possible. I wasn’t in any pain initially, but that changed drastically over the course of the day and I was hospitalized later that night. My body was in shock from all the lost spinal fluid, I was running a fever, and was in the worst pain. There was concern that I might have an infection, so my medical team wasn’t taking any chances. They blasted me with antibiotics and tried all night to get my pain under control. 
 
So, there I was on Easter morning, watching our church service on YouTube. Fighting the fever, the time passed slowly with 10-20 minute naps and the nurses taking vitals every 30 minutes. As I counted the hours, I kept repeating to myself a quote from the ancient stoic philosopher Marcus Aurelius. “The blazing fire makes flame and brightness out of everything thrown into it”. 
Messages of encouragement and support poured into my phone day and night from time zones all over the world. The outpouring of love was comforting and humbling. 
 
My family was amazing. My parents had rushed over to Bend the night before, when they found out I was being admitted. My mom is such trooper and an amazing mama bear… no cub of hers is going to be in the hospital without her being there to supervise-- if she can help it!! She stayed with me and slept in my hospital room for six days—well… she tried to sleep! It was a pretty restless.
 
My six year old twin nieces Kylie and Kolbie sent their own version of a music video from Austin, Texas. With Kylie strumming her ukulele, they sang along to the Kacey Musgraves song “Rainbow”. 
I smiled as they serenaded me with these words:
 
“Well the sky has finally opened
The rain and wind stopped blowin'
But you're stuck out in the same ol' storm again
You hold tight to your umbrella
Well, darlin', I'm just tryin' to tell ya
That there's always been a rainbow hangin' over your head”
 
I’m so thankful for my parents, siblings and nieces. I know this whole thing scared them, but my family has always been able to bind together and get through the crazy episodes of life. 
Crazy episodes. 
Like brain surgery #24 and #25, 12 days apart… and all the other stuff in between?
Yeah. That’s crazy. It’s real. 
 
Fast forward and as I’m writing this, I’m about 10 days post-op from that second surgery. When I was finally cleared of all infection and they were able to operate (on April 23rd), they found that my shunt valve was completely blocked and fully disconnected from the ventricular catheter. While there is no way to know exactly what caused this, the theory is that the shunt valve clogged (after only 9 days) and then the resulting pressure caused the valve to blow off the end of the catheter. The catheter kept pulling the CSF from my ventricle and dumping it into the space behind my incision, which eventually couldn’t hold and caused the leak. As soon as I was out of the surgery with a new shunt valve that was properly connected, I was instantly better. Within just a couple of hours, the pressure behind my eyes and the extreme headache pain I had experienced for days was virtually gone. 
 
So, here’s where I’m at today. There are plenty of questions. 
Is this a new reality? I hope not, but I have no control of that.
Are we really going to have valves fail in less than 10 days? I hope not, but I have no control of that.
Are we now going to completely wipe my body out with antibiotics every time I spike a fever? I hope not, but I do understand why they needed to do this.
And am I supposed to be ok with this? That’s my choice.  
 
Processing trauma of any kind looks different for every individual. For me, I’ve just tried my best to focus on only what I know for sure right now, as well as what I would like to see in the future. I often tell people, “It’s ok to be different on the other side of challenge and experiences”. There’s this overwhelming need in society to be “ok”. It seems like the end goal of each day is that you held it all together and got through the day unscathed. Even more so, we strive to be the way we perceive others to be, even though much of that perception is shaped through the curated and filtered lens of social media. When you ask someone how they are doing, how often is the answer “fine”? Every time I go through these surgeries, I remind myself that I’m going to be different… and that’s ok. It doesn’t have to be pretty. I embrace the new Amy and tell her she is ok. 
 
My friends have been instrumental in soothing my soul and making life easier during my recovery. 
One of my dear friends showed up on my doorstep the day I came home from the hospital with a bag full of groceries.
My sweet friend Ken, who I met on an airplane (see my last blog post for the story), sent me the most beautiful flowers in the hospital – with lilies and roses that made every nurse and doctor tell me how good my room smelled. 
There were countless text messages. 
Forehead kisses and tight hugs.
And some really hard conversations.
 
Can you believe that there are hundreds of thousands of little babies and non-verbal children going through this battle with hydrocephalus? 
It’s not ok. 
We are going to keep pushing for answers and better solutions. 
While we are all relieved and thankful that I have been so carefully cared for, we are not ready to accept that brain surgery is the only option. 
We need a cure for hydrocephalus.
And even on the days when it’s really hard to keep sharing my story, I’m going to stay committed to this path for as long as it is providing awareness and comfort. 
 
In her book Brave Enough, Cheryl Strayed writes, “When you recognize that you will strive not in spite of your losses and sorrows, but because of them, that you would not have chosen the things that have happened in your life, but you are grateful for them, that you will hold the empty bowls eternally in your hands, but you also have the capacity to fill them? The word for that is healing.”
 
I’m healing. 
In the words of Brene Brown, I’m in the arena, getting my ass kicked. 
But I stayed. 
We stayed. And we got through it.
I was strong enough. I was ready.
I found peace in the midst of the chaos, by clinging to my faith and holding what I know. 
My brain and heart battled hard.
My mind battled even harder.
And we won… for now. 
 
I’m healing. 

​On a plane ride to Nashville back in December, I met a man named Ken Lyons. It was a Southwest Airlines flight, so you have to pick your own seat. As soon as I walked onto the plane, he made eye contact with me and I decided to take the middle seat next to him. As we took off, we started to make small talk. He was on his way back from a quick trip out to Portland from his home in Omaha, Nebraska to attend an awards ceremony for his son’s work. It was clear that he was super proud of him. He asked me what I was traveling to Nashville for, and I told him about my friend Erika – and how we were meeting in Nashville to celebrate surviving the crazy year we both had. Erika successfully battled breast cancer in 2018. This led to Ken and I talking about the unique friendship that she and I have. I told him about how we were inseparable when she lived in Oregon, how she has supported me through all of the brain surgeries I’ve had, and all the incredible food she’s fed me over the years. I also told him about how every Friday, I’d pick Erika up and we’d go grocery shopping together, then out to Vietnamese food for lunch. We laughed about how our dogs would have sleepovers. I teared up as I told him about how she stood by me through the dark days following my divorce.
 
We talked about hydrocephalus, brain injury, and rehabilitation therapies. We talked about our faith, family, and motivation for moving forward. We discussed mental training and stoic philosophy, and traded book recommendations. It was a rapid-fire conversation that lasted the entire trip. It turns out that Ken and I have a lot in common. He holds a similar faith, enjoys learning and studying new things, and is also battling a neurological condition. We traded information and ideas – and I encouraged him to be a moving target. To keep on walking. To stay in the arena. I told him that my life is a living testimony to the fact that you can navigate the ups and downs in life – with a little bit of stubbornness, and a whole lot of grace.
 
When the plane touched down, Ken turned to me and he said, “Amy. You are like a human charging station. I just plugged in and got charged up, and now we part ways.” We got off the plane, and I gave him a hug. I’ll never forget the day our paths intersected. Although he called me a charging station, he didn’t know that he renewed my spirit as well. A perfect stranger had changed my life by simply having a conversation. 
 
In the months since that flight, we have exchanged a few emails back and forth. On Christmas Day, I received an email from Ken that read “Merry Christmas, Beautiful Spirit.” These sweet words brought tears to my eyes. I’m forever grateful for the opportunity to plug in and charge up. 
​
- for Ken... stay strong, my sweet friend. 
love, 
Amy 

A few weeks ago, I turned 39 years old. Thirty-nine is kind of a weird age. On one hand, it’s just a number – it’s simply another year and another day. Every day is important, and every year presents a new opportunity. But on the other hand, it’s almost 40… which is one of those milestone birthdays—and one that for whatever reason, feels important. My life has changed significantly in the past few years, with tough changes in my health and relationship status – but undeniable growth in other areas. I’m mentally and emotionally stronger, and much clearer in my spirituality. But turning 39 has been interesting, because it’s challenged me to look at where I’ve been and think about where I’m going – and has brought a certain resolve to get some key factors figured out (to the best of my ability) before my next birthday. 
 
One of the fundamental things I’ve been examining within myself is where I am at with my overall health, and the ways in which I am currently handling it. It’s extremely hard to type this sentence… but I am really unhappy with my body right now. It’s so uncomfortable to put that thought out there, because in my mind and in my heart, I know I shouldn’t feel this way… but I do. My weight and body shape have changed a bit in the past several years, even though by many standards, I understand that I look just fine. Please don’t send me a message about how I am being completely ridiculous about this… I fully realize that this opinion will not be shared by the people who are close to me. But here’s the deal. I have this personal policy – that I’m not allowed to complain or feel negatively about something if I’m not willing to make changes that will move me forward. 
 
So, I have asked myself, “Why. What’s wrong with the way you look?” I’ve never been a girl who has been wrapped up in body image… I’m actually kind of a tomboy at heart. I wasn’t raised to focus on what I look like, and I am so thankful for that. Also, I really do have a generally healthy and very active lifestyle. I eat good quality food, and I lift weights avidly – 5 days a week. 
So… what’s the problem, Am?? 
 
Like most things, the answer is multifaceted. 
 
Even though I know I shouldn’t be, I’m angry at my brain for the surgeries that I continue to endure. When I saw my neurosurgeon this past week, we made the decision to schedule my next brain surgery – and we counted that this will be my 20th surgery related to my hydrocephalus in 6 years. It will be the 24th overall. The daily pain, the various medications, and the basic trauma of going through all of these episodes has taken a toll on my physical being. There’s just no getting around that part. The only way for me to not be angry about the situation is to believe and understand that God has a bigger purpose for my life, and that He will somehow use all of this pain and suffering in that purpose. If I didn’t believe that, I would be absolutely discouraged and devastated by these trials. I’m working every day to accept the challenge and live out my purpose, but it is so hard to process at times. 
 
The second reason is that I’ve let myself be lazy about the food and drinks I put into my body. Like I said, I generally eat high quality food, and I’ve accumulated a lot of knowledge about nutrition over the years. I love to cook, so when I do, I prepare things that are good for me. However, the emotions and exhaustion resulting from the roller coaster of the past few years has made me much less diligent about making the right choices all the time. It’s safe to say that I often eat the wrong things at the wrong times – and sometimes when I don’t feel good, I don’t eat at all. If consistency is the key to forward progress, I’m failing in that department.   
 
Lastly, I acknowledge that my exercise routine has changed significantly since the time when I feel like my body was where I wanted it to be. The frequency has not changed, but the type of training has. In 2012-2017 I worked out with a couple of different trainers and embraced more of a strength and conditioning style of programming. My exercise was much more varied, and I also worked out in a boxing gym off and on during that time. (Keep in mind that this was also about 15 brain surgeries ago!) In late 2017, I changed trainers to the strength coach I currently have and changed my programming to a strictly strength-based regimen. It was a huge shift, but I adore my coach and I’m the strongest I’ve ever been. I love lifting weights, and the more brute strength I have, the more stable and balanced I feel. It’s also made a difference in my ability to sleep and heal from surgery. All of these things hold incredible value, so I don’t have any regrets. But there’s no question that the heavy lifting 5 days a week along with the lack of conditioning has changed the shape of my body. I’m strong, but I’m just not as thin as I was. 
 
I’ve come to this conclusion. Mental discipline needs to be applied to this area of my thought life. The way I feel about my body is completely in my own control, and if I want it to change, I just need to make the decision to change it. How I feel about myself is a choice, and if I’m not happy with something, I am fully capable of taking the steps to modify what I’m doing. I also have the ability to make a clearer distinction between what I want and what is necessary – and separate the emotional part from the necessity. This involves asking myself some difficult questions, then facing the answers head-on and dealing with them. 
Do I want to be super thin, or do I want to be incredibly strong?
Why do I feel like I don’t look good enough? Does it have to do with the fact that I’m single? And where does the treatment and recovery from my hydrocephalus fall in all of this? 
Am I going to fight this condition from a proactive standpoint, like I encourage other people to do? 
 
Here’s what I know. I am strong enough to face the feelings that I’m having and make choices that will change the game. 
I am willing to stay in the arena and battle the demons that tell me I’m not good enough and not pretty enough. 

​And I’m resilient enough to start over when I have to. 
 
Stay beautiful. 
 
Peace, 
Amy

“What are you thinking about, Am?” 
I guess I must have gotten quiet, but the question brought me back to the present moment. Aron is one of the only people who has seen the day-to-day, week-to-week battle of the last year and a half. As my strength coach, he’s had to endure the past few brain surgeries and recoveries almost as if he was going through them himself—and it’s been a rocky road. And as one of my closest friends, he also knows that when I don’t say anything, I’m probably thinking about something. 
The monkey mind rarely stops thinking. 
 
So, I looked up at him (upside down) and answered. “I didn’t lose any strength.” 
Those words are heavier than all the pounds of weight loaded on the barbell I just lifted. As I laid on my back and let my brain unwind, I thought about how hard it was to get back to this point. 
The nights I couldn’t sleep more than a few hours. 
The days when I could hardly move because of the pain. 
The times we lifted weights with a giant ice pack ace bandaged to my torso. 
Dose after dose of anti-nausea medication.
The many times I’ve passed out.
Rep after rep of weight lifted off the ground—a symbolic tribute to the promise that I will stay in the arena.
Day after day of stringing little victories together until we can declare that I am finally healed from the latest greatest trip to the operating room. 
All of it is part of this crazy, excruciating, confusing, and beautiful lesson I’m learning… that I am living proof that you can find peace in the midst of chaos and catastrophe.  
 
“No Am… you’re stronger than you were. We are stronger than we were.” 
Aron, you’re right. We are stronger. I bury myself in this constant drive for progress, obsessing over all the little things and losing sight of the big picture. I need to zoom out and look at the journey through a different lens, recognizing that I’m making it. We’re making it. 
 
As it always is, the physical recovery from the surgeries I had last year (May, September, and October 2018) has been a roller coaster. If you’ve ever had brain surgery, I know you understand this. But truly… if you’ve ever had ANY type of surgery – let alone back-to-back-to-back surgeries – you get it.  The effects that the anesthesia alone leaves on your body can take months to correct. The biggest struggle I’ve experienced in this recovery period has been extreme nausea every morning. Naturally, we’ve assumed that this was an issue with the drainage of my shunt – either too much or too little. We’re about four months into figuring out a shunt setting and combination of anti-nausea medications to get this under control. My neurosurgeon has adjusted my shunt setting a few times, and my primary care doctor and pain management specialist are involved in finding the right combo of meds. It’s a constant work in progress – we rejoice on the days when it seems even a tiny bit better, and plough through the tough days when it feels like it will never end. 
As my friend and fellow hydro warrior Bryant always reminds me, “Chin up, eyes forward.”
 
Mentally and emotionally, I am doing well. I have created a routine in which I can regularly have a peaceful couple of hours to myself in the morning, and it has helped me immensely. Between my career, my time in the gym, and the fact that I live with two of my siblings (which is amazing!) I am around people all day long. I decided about a year ago that I would get up earlier every day in order to have some quiet time and a routine time to study, pray, and write. I’ve grown to love this time, and it’s not hard to wake up early any more. 
 
As we near the end of the first quarter of 2019, I’m excited about the plans and goals I have for this year. I’ve got some projects coming up that will stretch my comfort and challenge me mentally. Every day is a new opportunity to grow and learn, connect with people, and be influenced by the good things around me. God has truly blessed me and kept me safe through all the insanity swirling through my world the past few years—and I am prepared to move forward as called. 
 
We’re only going to get stronger. We don’t go backwards. 
It’s like riding a bicycle downhill without brakes. We can pedal backwards, but we keep rolling forward. 
 
Let’s do that. 
#we. 
 
for Aron -  Love, Monkey

Hydrocephalus sucks. It really does.
It’s like sailing on the uncertain and ever-changing sea of spinal fluid, hanging on for dear life.
There’s a John Mayer song called “Emoji of a Wave” and a close friend of mine used to make me laugh by quoting the lyrics to this song to me. Whenever the proverbial skies would darken and the storms of shunt surgery were inevitable, he’d say to me, “Oh, Honey, it’s just a wave.”
We ride these waves… these waves of water on the brain.
But I’m always looking for ways to improve. I feel like we all are.
 
In my last blog post, I shared 10 random things about my journey
with hydrocephalus. 
Today, I want to share 10 things that I do regularly that I believe make a difference in my ability to fight this condition. If you are battling hydrocephalus as well - or if you know someone who is – I hope that this post is helpful in some way. I know that I have always found comfort in learning what has helped other people. Many of these concepts are also shared in more detail on my website. While I can’t give medical advice because I’m not a doctor, I hope that these topics can give you some ideas to ask your own doctors and therapists about.
 
Lastly, thank you to everyone who plays a role in
keeping me healthy and safe.
It takes a village, and I’m fortunate to have
​some brilliant and caring people in my corner.
We’re building this road, and I am committed to walking it
with relentless determination and reckless joy.
May we never stop learning.
 
#we.
 
 
Hydrate (and eat) regularly.
Hydrocephalus is defined as an abnormal accumulation of cerebral spinal fluid (CSF) in the ventricles of the brain. The human body makes about a soda can of new spinal fluid every day. Everything we put in our bodies either supports the body in making fluid or dehydrates the fluids in the body. Although it may be a very simple way of looking at this, I generally try to decide whether I feel like my symptoms are from under-draining (high pressure) or over-draining (low pressure) – then manipulate the fluid my body is making or absorbing by eating and/drinking accordingly. The body is a complicated organism, but I do find that sometimes I can help myself out just by staying generally consistent with my nutrition. Then I can adjust that baseline as needed. Ask your neurosurgeon or neurologist what foods and beverages will positively or negatively affect the levels of CSF in the brain. 
As a side note, I have found an anti-inflammatory version of the Paleo diet (no grains, legumes, or dairy) with an emphasis on high quality meats, vegetables, and fat has been very helpful in my quick physical recoveries from surgery. I am not always strict with this protocol, but usually try to follow it closely for a few weeks after each surgery.  
 
Exercise consistently.
I strength train with a coach five days a week. Staying active and as physically strong as possible is one of the most significant factors in my success over the past 5-6 years. In addition to staying ready for any issues that may arise with my shunt, I have found that even if the actual act of lifting weights is uncomfortable, I generally have lower pain levels if I am lifting regularly. I get a lot of questions from people in the hydrocephalus community regarding how physically active I am – and the most common questions are about what to do if exercise makes your pain worse. Again - I’m not a doctor. But what I have found is that generally speaking, physical effort is going to help with high pressure (under-draining) symptoms – which is the most common type of pain for me to have. Low pressure pain, from over-draining of a shunt, is more than likely going to be made worse by any sort of exertion. These things are important to track, and to tell your neurosurgeon about. Aron, my strength coach, is usually one of the first people to notice subtle changes in my functioning… because he is tracking what I normally am able to do and can note even small changes or trends in my training. Then we use that information to help my neuro team when they are trying to figure out if my shunt is occluding again. 
 
Lay down when I need to.
Just like the exercise thing, it’s important to understand how body position will affect your shunt. If you are over-draining, and activity is making things worse, the only thing that may help is to lie on your back, to slow the rate of the shunt. Sometimes, if just lying down doesn’t help, I lay on my back with an ice pack at the base of my skull, and/or elevate my legs. 
 
Medicate to the lowest common denominator.
I have a strict policy not to answer questions or share information about medications – past or current. This is an area that I strongly believe should only be discussed by a patient with their medical team. But I will tell you that in general, I try to take the least possible amount of medication that will reduce a reasonable amount of my pain and symptoms. I call this “medicating to the lowest common denominator”. For me personally, it’s important to put as little medication as possible into my body on a regular basis. I do have a pain management doctor who I work closely with to manage my care. 
 
Keep a fairly structured schedule.
I keep as close to the same sleep schedule as possible, seven days a week. I also exercise on the same days and keep my work schedule consistent. All of these factors make it easier for me mentally and physically – and again, really help with comparing with a baseline of energy and function when I start to malfunction. 
 
Understand how trauma and damage to my nervous system play a part in my pain and symptoms… and focus on soothing those factors. 
A few years ago, I started to study the nervous system and how the brain reacts to trauma. I found that a lot of my symptoms are consistent with the physical struggles that affect traumatic brain injury (TBI) and post-traumatic stress disorder (PTSD) patients. This has helped me to understand and accept many of the issues that I experience – especially right after surgery. As it does with every patient, it has evolved over time. Some of my symptoms are very predictable now, but others are new and can be scary without that general understanding of what my brain and body are trying to process. My study of this subject has led to work with some brilliant rehabilitation experts, and I am always trying to find new ways to soothe my nervous system. Some of the things are simple, like swinging on a swing set. Others are more involved, like working with a therapist who specializes in a modality called Trauma Release Exercise (TRE). 
 
Stay spiritually engaged. 
My relationship with God is a big part of my life. It keeps me grounded in what I believe to be true. Above all things, I have great peace in my belief that God created me with a purpose. There may not be a reason for my pain, but there can be a purpose. I’m willing to stay in the arena and see how that plays out. That’s my choice, and I actively choose it every day. 
 
Practice mental training. 
I have written extensively on my blog about mental skills training, and I practice certain aspects of it every day. Meditation, affirmation, and relaxation techniques can all play a part in how I feel on a physical basis – because it affects how I experience pain. It doesn’t mean that the pain isn’t there, but it helps me get through it by controlling my response. 
 
See a counselor when I need extra support.
I have seen a counselor off and on for many years and have also done therapy with a pain management psychologist. All of the work we have done has given me a basis of strength on which to draw when things get hard. I am thankful for the support I have received from my counselors. I always encourage patients, parents, and children affected by hydrocephalus to pay special attention to their emotional and mental health, as it is so crucially important and makes a difference in your physical health as well! 
 
Listen to lots of music.
Music is an amazing healing tool, that has been scientifically proven to affect the brain in such unique ways, that it isn’t even fully understood yet. But listening to music as a form of meditation has been a part of my daily routines for several years now. I rely heavily on a constant stream of specifically curated playlists of music to get me through difficult spikes in pain, and to generally soothe my soul. Music truly heals. 
 

Here are 10 things I’ll tell you about my life with hydrocephalus (in no particular order). 
 
1. It hurts. 
The most common questions I get via my blog or social media relate to what my headache pain is like, and how I treat it. I have a strict policy that I don’t share specifics regarding medications, etc. but I will tell you that I do have chronic daily headaches, and I manage them with a combination of medication, lifestyle, and therapy. Mental training and meditation are also a part of my daily life, and through these I control my reaction and experience with pain.  
 
2. I believe that the trauma my brain (and body) goes through due to hydrocephalus can be healed-- if I am willing to put in the work. 
When I was re-shunted in 2012, I made it a personal challenge to learn as much as I could about neuroscience and the brain. I devoured everything I could learn about hydrocephalus and the treatment options that are available. I also researched the healing processes of the brain and body. I currently do strength training (weight lifting) five days a week, and work methodically towards rehabilitation after each surgery. Music therapy has helped me a lot. In addition I focus on my nutrition, hydration, and rest to assist in my healing. 
 
3. I love my neurosurgeon. 
I travel 3 hours for the surgeon that I have seen for over ten years. He is in a small market (Bend, Oregon) but the drive is well worth it. The most important things to me are that I communicate well with him, he knows my case, and I know he believes in me. Even when I have a hard time healing from brain surgery, and he knows I will give 100% effort, all the time. There is nothing more crucial than having a good working relationship with the person who is making game-time decisions on your behalf. 
 
4. My face tingles. 
The facial nerve that runs through my right cheek tingles intensely, is painful, and makes my eye droop sometimes when my shunt is acting up. This is not necessarily a classic symptom of hydrocephalus. But it’s a symptom that I have – a result of having the right side of my head cut open 20+ times. It’s just damaged. So… sometimes things happen that lead to other things happening. It’s just part of the deal. I try hard to take care of all those little things that come along with the overall package – because taking care of the little things makes dealing with the big things a heck of a lot easier. 
 
5. I have trouble with balance. 
Yep. It’s almost comical. My balance is so bad sometimes… I have fallen in the grocery store, on construction jobsites, and in the gym – all in the past 6 months! So, I work really hard at staying safe, and knowing the environments in which my brain gets a little shaky. Personally, I have a harder time with balance when my nervous system gets overwhelmed – so I try to stay out of situations where there is a lot of confusion… big crowds milling around, or a lot of flashing lights and colors. Those are things that bother me personally – you may have totally different triggers. But just know that if you struggle to stay on your feet, you are not alone!
 
6. It takes about 3 weeks after brain surgery for me to start to feel like myself again, and it takes about 6 weeks for me to fully heal. 
I have a pretty consistent response to surgery, and I am thankful for the predictability of these patterns. I find comfort in knowing that the horrible parts won’t last forever, and I am highly motivated to push for the good days. 
 
7. Sleep is a battle. 
Lying down makes my programmable shunt’s flow slow down, and I get really bad pressure headaches at night. I also have a lot of nerve pain now, which flares up at night when I lay down. I have never been able to get into a deep sleep if I’m propped up, so I just try to sleep the best I can. When I wake up in the middle of the night, I have to get up and walk around a little bit. Then I listen to a sermon from one of my favorite pastors, an Audiobook, or a sleep meditation until I fall asleep again. 
 
8. My hair is falling out. 
I was blessed with really thick long blonde hair – which completely covers my incision site. But my scalp has taken a beating on the right side, and recently I have had hair falling out in big chunks, which is really alarming. I found out that this is a common trauma response, especially after a lot of anesthesia… and I had 3 surgeries in 5 months in 2018. So I’m taking all the steps to protect my hair as best possible, but also to soothe my nervous system. It’s slowly getting better!  
 
9. Hydrocephalus affects my relationships with other people. 
This might seem obvious, but it’s worth saying out loud (or on paper… or in this blog post.) Sometimes hydrocephalus has had a negative effect on my relationships, but on the flip side… there are people in my life that I never may have known if it wasn’t for hydrocephalus. There are lots of things that can be said on this topic… In fact, it was one of the things I spoke about at the 2018 HA Conference – but the bottom line is that the people who are meant to be in my life will be there. Others, who are meant to be there for just a season, will come and go. Ultimately, this is my path to walk… and for those who make the choice to stand in battle with me today, I am forever thankful. 
 
10. I am grateful for the journey. 
When I was diagnosed with hydrocephalus at age 17, I had no idea how much it would change my life going forward. Recently I have spent a good deal of time studying ancient stoic philosophy. Learning about the stoic mentality has given me a better understanding of how people in history have overcome enormous obstacles. I have come to accept that the exact thing that has brought me the most pain and challenge in my life has also been the thing that has brought me the most purpose and motivation. I believe that hydrocephalus has made me a stronger person, and has taught me patience, endurance, and empathy for others who are in the same boat. I have committed myself to using the journey that I am on to try to help other people, by sharing my story and supporting them in their own. For these things, and for the incredible souls that are on this life path with me, I have relentless love. 
 
Over the years, I have shared a lot of things about my life with hydrocephalus, but I still feel like there are so many people out there who are struggling with loneliness in this diagnosis. If you are one of those incredible humans… if you have hydrocephalus and feel alone, or if you have a child who has been diagnosed with hydro and you are desperately looking for information, inspiration, and comfort… I’m here to tell you that you are not alone. We may be facing a giant mountain of uncertainty, but we will climb it together. 
 
Thank you for reading my words. And thank you for walking beside me. 
 
Here’s to our relentless pursuit, 
 
Amy

​You cannot love in moderation.

This is a line from a song called Land of the Living, by Matthew Perryman Jones.
Anytime I hear this song, it makes me feel emotional. There are so many words in this song that hit me like a ton of bricks, but this line is the most important.

You cannot love in moderation.

It reminds me to allow myself to be broken and open in relationships that are safe and reciprocal. To allow the walls around my heart to come down is the only way to have true connection with other people. Even though I know this, it’s still really hard. In my life over the past several years, there have been so many major changes. It’s not natural for me to allow myself to be truly seen by anyone, because I feel the constant need to guard myself. When I allow myself to love wholeheartedly, there is a deep ache that comes with the knowledge that I am allowing that person to be close enough to destroy me emotionally.

However, I do believe this is why we are placed on this earth together. I believe we are to care for the ones we choose to walk alongside, and that this is the true purpose in life-- and what makes all that pain worth the battle.

You cannot love in moderation
Dancing with a dead man's bones
Lay your soul
On the threshing floor

Between the walls of the river,
Shoulders bare the sacred stones
We made it alive
We are not alone

Kiss the ground
And change your name

Thank you Matthew Perryman Jones, for this beautiful song – that rocks my soul and brings be back to center.
Music heals.
​#musicheals

All my best,
Amy

“You know, Amy… At some point, you just have to be realistic about your condition.”
This was the feedback I received a couple years ago from a neurologist who was seeing me for my hydrocephalus. I’m sure she meant well. Actually, she might have even been trying to encourage me -- by lowering my admittedly very high expectations. 
 
But here’s the deal.
I’m not looking to “be realistic”. 
I aim to be extraordinary. 
Every day I work to discover the things that make my experience and impact in life more meaningful. 
I may not have the skills and knowledge to find a cure for hydrocephalus. However, I do have the ability to support the incredible humans who are working every day on new solutions. 
I am living every day to the fullest of my abilities, and I continually seek a better understanding of the things that are in my control. 
I do these things with some very committed and likeminded individuals.
​My inner circle is small, but it is mighty. 
Together we face forward, staying focused on what we can impact through perseverance and education. 
 
It’s why I use the hashtag #we in my posts.
WE are doing this together.  
WE are going to live and love between the madness.
WE are going to help the world understand the severity of hydrocephalus, and the need for better answers. 
WE are not going to settle for being “realistic”. 
WE are going to make an impact. 

Together. 
#we.
​- Am

for aron, who chooses to catch me, and absolutely refuses to waver. #we. 

Several years ago, a therapist suggested that I write messages to myself on post-it notes, and put them on my mirror. These photos have become a thread in the tapestry of my online life, but I have never shared what the notes mean to me. In this blog series, I will share a handful of those moments - in hopes that it will provide encouragement to someone out there. 

​Peace & Much Love.
- Amy

Love hopes all things, endures all things. 
I believe in love.  
I believe that my most important mission in this life is to make true connections with other human beings. 
I believe that there are no chance meetings; and thus everyone who comes into my life path is meant to be there. 
I believe that each one of those people have the power to change my life. 
I believe that through love and compassion, I can learn something from every single person I meet. 
And I believe that the person I am today is a direct result of all of the incredible people who have been divinely placed in my life. 
 
Love is hope, and love is being willing to stay in the trenches with someone you care about – not running away from them in times of struggle, but facing the storm head on, and running towards their pain. 
 
In I Corinthians 13:4-7, the Bible gives a guideline for how to recognize true, everlasting love:
4 Love suffers long and is kind; love does not envy; love does not parade itself, is not puffed up; 5 does not behave rudely, does not seek its own, is not provoked, thinks no evil; 6 does not rejoice in iniquity, but rejoices in the truth; 7 bears all things, believes all things, hopes all things, endures all things.
 
This is one of the most famous passages in the Bible – and it's a very popular addition to wedding ceremonies regardless of religious background.
As I have gone through so many difficult times in life, I have reminded myself of that last line (verse 7). 
Love bears all things, believes all things, hopes all things, endures all things.  
I believe that the only perfect, unchanging love is the love of God. I hang onto the fact that I’m not alone in any of this. When I can’t bear it, I can’t believe it, I can’t hope, and I can’t endure… the love of God can. And in those trenches of this painful life, when another person comes running at your pain, willing to share the burden, believe, hope, and endure.... hold them tight.
 
Love heals. 
Love endures all things. 

Stay in the arena, and love one another.
- Amy 
 
For MacKenzie. xo 

Several years ago, I went through a really rough patch with my hydrocephalus, where I had a total of 4 brain surgeries in less than 6 months. It was a pivotal point in my understanding of what living with hydrocephalus was going to be. Suddenly there was a new reality, that these surgeries could come in clusters… and that no matter how healthy I was otherwise, the bottom line was simply whether or not my brain would decide to accept and heal from the shunt surgeries that are required to keep me alive. 
 
It was during this time that I learned a valuable lesson. Even though I had zero control over how my brain was responding to the shunt, I found that I had complete control over my own reaction to these setbacks and repeated surgeries. Controlling my reaction really controlled my overall experience. Going forward from that point, I made a conscious decision to tell myself that this was just required maintenance. When the shunt needs to be repaired or replaced, I tell myself to “hit the reset button” and start over again. I’m not suggesting that I downplay the fact that this is brain surgery – believe me, it’s awful. But I do my best to keep it in perspective. 
 
I have often explained to my friends and supporters that if I treat brain surgery like it’s a giant catastrophe, my life will feel like one giant catastrophe. For the last several years, I have had brain surgery again and again – and for now, there is no guarantee that this frequency will let up. So, when something goes wrong with my shunt, I do everything in my power to take it in stride mentally. Controlling my emotional reaction makes it easier to navigate the physical challenges that are inevitable. 
 
This week I had my 22nd surgery related to hydrocephalus. This time it was a laparoscopic procedure to re-route my distal (abdominal) catheter, which was wrapped around my liver and rubbing on my diaphragm. As usual, it was a long and painful process to diagnose and work through this setback, and I’m relieved to once again be safely on the other side of surgery. It will take me a little while to get my energy and strength back to where I was pre-surgery, but I am ready to put in that work and move forward. Each day, I remind myself that the way I experience my own life is completely under my control. 
 
I am strong. 
I am healthy. 
I am capable. 
I am loved. 
And I am in relentless pursuit of everything that’s important. 
 
Hit the reset button. 
​Am