​I opened this journal file on my computer this morning, not really knowing when I had written last. Prior to pausing my regular writing and blogging, I was in a good rhythm of journaling almost every day. Throughout the struggles I experienced medically in 2019, I wrote consistently and shared as much as I could on my blog and social media. But then in early 2020, I started helping my good friend Freddy Sandoval write his book on mental training and for about six months I shifted my attention and all the time and energy I had for writing towards that project. By the time we were finished, I think I was just ready to unplug for a while—and here we are, over a year and a half later. 
 
So much has changed. Physically speaking, I am in the most peaceful point in my journey in over a decade. In a completely unexpected turn of events, my shunt completely failed in the late spring of 2020, and my body has been able to manage my hydrocephalus solely with my ETV ever since. There was a big adjustment period, but slowly I was able to stabilize and handle the difference in how my head felt. Everything just felt different, and somewhat foreign. Even though I was functioning – working, staying active, and walking a few miles almost every day, I was still feeling physically sick and having some unexplained symptoms. A few months later, it was discovered that the abandoned distal catheter from my shunt had perforated my bowel and had to be removed in an emergency surgery. As shocking as it was to discover that the catheter was in my bowel, it was even more alarming to hear that they believe that it had been there since the time of placement (during a previous revision surgery about 16 months prior). With this new information, so many symptoms that I had been fighting for so long made total sense, and it felt like a giant weight had been lifted off my shoulders. 
 
My medical team is amazing and has been so dedicated to getting me through everything I’ve been through, especially in recent years. However, I was starting to feel like a broken record – constantly telling them how sick I was feeling, and that even though it looked like I was doing ok on the outside, I was suffering inside. Little did we know that my body was fighting a low-grade infection caused by the fact that several inches of my catheter were literally inside my small intestine. Once we knew what was going on, it finally allowed for a solution and true recovery. I was incredibly relieved and threw myself into full restoration mode – which included a mental break from thinking about being sick all the time. I needed some time to pull back from sharing everything, and just be. I’ve spent the past year focused on work, my relationship, and my family & friends.  
 
If you have hydrocephalus or another condition that is ongoing, you understand that it never truly goes away. There isn’t a day that I don’t have to think about managing my headaches, pressure, and all the trauma-related symptoms that my nervous system has after so many surgeries. But I did make the choice to take a break from blogging about it for a while. It’s given me a chance to reset my rhythms in life and focus more attention on some exciting new things. 
 
In 2022, I would like to share a little more, from a different lens. I believe there are a lot of hydrocephalus patients and family members who go through similar ups and downs – a time when things are very difficult and there is a constant battle, but then there is a period of quiet and better health. Maybe there are a series of surgeries strung together in a short amount of time, perhaps coupled with an infection, like mine. Or perhaps it’s a few months or a few years of increased pain. But then – almost unexpectedly - everything settles down, and things get better… but you still feel stuck in the reality of those difficult times. 
Life gets easier to navigate, but you still struggle with what happened. 
The knowledge that it happened feels like the knowledge that it could happen again at any time. The memories of how hard it was haunt you and make you worried that it could be even worse next time. 
 
Honestly, this kind of trauma isn’t much different than what people experience going through any major life-changing challenge. Any personal loss, injury, or unexpected change calls for a similar type of healing process.
There is a time when the wounds are fresh and need immediate and constant attention. 
All your energy goes into just making the next step, getting through the next day or week or month. Everything hurts. 
But then the wounds start to heal. 
They scab over, and things are still rough, but they start to sting a little less. 
You begin to make it through whole days without constantly thinking about the pain and how to manage it. 
Eventually everything seals back up, and you are past the worse part. 
 
But friends, at that point you are faced with the choice to live in the memory of what happened, or face forward and move boldly into your future. It’s the hardest thing, and the best thing – to look at the difficulties you’ve been through, acknowledge them, and then shift your focus. I know – because not only have I been through the many challenges that hydrocephalus has brought (repeatedly), but because I have been through several other painful and life-shaping events and losses. Choosing to live and love between the madness of what I’ve been through is a daily decision for me. And I’m nowhere near perfect. When it’s hard and I fail, I start over. Sometimes I start over multiple times a day. And I’m grateful for the opportunity and grace to do so. 
 
My goal for this next season is to write about how I’m continually challenging myself to move forward in the wake of the difficulty and trauma of the past several years. I feel like that’s what I can to contribute to this community right now. I’ve always been raw and open about how hard things have been, but I’ve also always shared where I turn to find the strength and anchor I need. I hope that this will encourage someone out there to keep fighting, and to hang tight when the storm rages. 
 
Cheers, friends. Today we start a new chapter. 
Here’s to the relentless pursuit of everything that’s important. 
 
Stay in the arena, 
Amy

To say that the ways that everyday life and routines have been seriously affected by the COVID-19 pandemic is a gross understatement. People have lost loved ones, businesses and entire industries are shut down, and everyone is staying home. Even simple things like going to the grocery store have been affected – especially if you need toilet paper or baking supplies. 
The state of Oregon started our stay at home order on March 20, 2020, but schools and many businesses have been closed since March 12. I am so grateful that I’ve been able to continue working full time during the past eight weeks, because it has made it much easier to keep some structure in my days, not to mention income. I know I’m so blessed in that, and I don’t take it for granted at all. But as I have in other difficult seasons of my life, I set my resolve to really use and capture this time – if it’s going to be hard, I want to learn and grow from it. And I have. 
 
I’ve learned to sift through the daily news, ignore the drama, and follow the actual data. 
I have changed my priority on making sure our household has a certain amount of basic supplies. 
I’ve had to give the people in my life an increased amount of grace and understanding, as they are navigating their own challenging paths and emotions. 
I have been more intentional about calling and FaceTiming people I love, especially my 92-year-old grandpa. I’ve also caught up with friends I haven’t talked to in a while. 
I have worked hard to reset my sleep schedule.
And I’ve been taking long walks several times a week. 
 
All of those are good things, and I’m thankful for the challenge because it’s brought me to new patterns and realizations. But about two weeks into the stay at home order, I was feeling really drained and lost. I was doing what I felt I should to support the people around me, but as I spent energy on making sure everyone else was ok, I felt more and more lonely. This sparked a process and subsequent conversations that have changed the way I see myself and my role in the community around me. 
 
I always roll my eyes when people say, “I found myself.” I don’t think I was ever lost – I just believe that as you walk through life, layers and layers of relationships, trauma, victories and losses can cover up or distort who you know you are underneath it all. As I’ve pushed hard through a lot of really difficult things in recent years, I’ve stretched myself to fill roles in relationship and growth. In the deepest-rooted parts of my personality, I’m someone who strives for a continual increase in the quality of living and being – for me, and for everyone around me. I desire peace, love, and learning – no matter the cost. It’s hard for me to be around people who refuse to make the effort to rise to the occasions in life, simply because it’s uncomfortable. God never promised an easy path through life – and the beauty in the battle is that it shapes you into a stronger person physically and spiritually. But where does this get distorted? How do you know you’re living in a way that reflects your core values and intentions?
 
In the book The Four Agreements, Don Miguel Ruiz talks about four basic principles (agreements) to structure your everyday life by. And one of those agreements is to avoid making assumptions. Just like the other three agreements in this book, not making assumptions about what other people are thinking, seeing, and experiencing is so simple… but so difficult to apply to your passive and active thought processes. So, in talking with one of my closest friends a few weeks ago, I was challenged to actually do something uncomfortable in order to make sure I wasn’t making an assumption. Freddy Sandoval is someone I have referenced in past blog posts. In addition to being a great friend, he is a professional mental skills coach and has helped me to understand myself a lot better over the course of our relationship. But sometimes I have to laugh and shake my head when it comes to the joys of having a best friend who is a mental ninja…. He continuously challenges me to observe my thinking and stay grounded in my values. As we were chatting about some of the things I was feeling in relation to my roles and relationships, and shifts in my medical care, he asked me what my character strengths are. Since I had recently taken an online quiz on character strengths, I told him the results of that survey… which were hope, spirituality, and gratitude. His next question was, “What do you think other people see your strengths as?” A number of things flooded my mind, but ultimately, I didn’t really have an answer to that question. So, he gave me an assignment – to send a text message to 20 people I felt truly know me and ask them what they see my strengths as. 
 
I really didn’t want to do that. It made me so uncomfortable. I felt like I already knew what he was getting at… and it annoyed me because I knew he was right. (Remember what I said about having a best friend who is a mental ninja…?!) More or less, I knew that the answers I would get from my close friends and family would not match up with the assumptions I had made. You see, it’s really easy to assume the reasons that people appreciate and value you. And even if you are somewhat right, and they do appreciate you for those strengths or skills – it’s often not the first things they would list if asked this question. 
 
So, I did it. Begrudgingly. 
I sent out a text to 20 people, and over the course of the next few days, I wrote the responses down in my journal. And it blew my mind. Not because Freddy was correct – but because the things that the most important people in my world listed as my character strengths were so amazing. Words like creative, intuitive, difference-maker, cheerleader, and resilient. Dedicated, loyal, and warm. A survivor, a fighter, driven. The most common strength listed was determined, and the funniest was from my boss – who told me I am really good at convincing other people what they want… which made me laugh!! There were several references to my ability to cook without a recipe, and making others feel comfortable in social or business settings.
 
But one response hit my heart like a grenade and did exactly what this exercise was meant to do – which was to shift my perspective. 
One of my medical providers answered with this description of my character: “Fluid. You change, adapt, get stronger, chill out, relax, and concentrate on demand. You’re like water… you just flow through obstacles. To be clear, being fluid takes a great amount of control and strength. If you want to think of a hierarchy of traits, I personally think that being fluid is at the top. It is very Buddha, and there’s a great power in being able to flow around obstacles. If you can, you are unstoppable.”
 
There it was. 
This is who I want to be. 
This one answer covers all the other answers. 
This is who I am. 
And it was so humbling to hear that answer from someone I truly value, and who knows me well because he’s walked through the valleys and celebrated at the mountaintops alongside me in the thick of the battle. He’s in the arena with me.  
 
Asking people to list the strengths they see in me was hard only because I really didn’t want to give up the traits that I believed were most important. I hold with a death grip to being hard-working, responsible, and a leader. I tell myself that everyone expects me to show up and take over the burdens of stress and day-to-day life. I do these things, with reckless abandon, until I break down and can’t continue. And honestly, it’s about pride. I pride myself in being “that girl”. The one who can handle everything. The one who doesn’t crumble when things don’t work out, when jobs are difficult, or tragedy strikes. And while I might be those things, they aren’t the strengths that truly matter. 
 
What matters is that I’m fluid. 
Adaptable. Strong and flexible. 
I flow around obstacles as they come.
These are the things that define me.
 
In the past couple of weeks since this exercise, I’ve been working on reconnecting with a truer and more authentic version of who I am. From the beginning of this COVID-19 crisis, I made a vow that I would be strong and steady, stoic and focused through all of the panic that surrounded me. I strongly believe that perspective and mental control are the keys to thriving in a time when everyone else is riddled with anxiety. But I also was determined to use this time to grow and reset. Jim Kwik, a brain-based learning expert and author, suggests listening to baroque classical music while you are performing tasks that require focus. The other night I was walking at a local nature preserve, and I decided to listen to Handel instead of my usual podcast or audiobook. I just needed to let my mind wander. And as I walked and the sun was going down, I had the sensation that I was walking through the story of my life, with the music being the movie score playing as I watched myself. It sounds kind of funny, but it was actually really beautiful, and I was able to see the strengths that were listed in the text message responses from my 20 people. 
 
I could see my determination as I walked away from the pain and trauma of the past 12 months. 
I could feel the strength that has come from lost relationships and changed perspective. 
And I could see myself as fluid. 
 
Taking each moment as it comes, with relentless grace, steady growth, and unapologetic joy. 

Love,
Amy

for Freddy, who keeps me anchored to the truth. 

​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

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

Stay focused, Am.
I’ve taken several tests to determine personality type, and all results have been the same.
I’m an Executive personality type on the Myer-Briggs, and an 8 on the Enneagram.
Driven.
Goal oriented.
Focused.
If there’s one thing I know about myself, it’s that when I was created, I was wired to chase knowledge and understanding. Once I have some understanding of the task at hand (even just a little bit), I use that information to move closer to my goals. When it comes to getting through the obstacles with my health, I tend to approach it the same way I would tackle a project at work or something in my personal life. I wrote this note to myself earlier this year, I was struggling with my hydrocephalus and the roller coaster of shunt failure was at full tilt.
Stay focused, Am. The pain and nausea that come with shunt malfunction are only roadblocks on the highway to solution. At the time, a plan was in place and we were moving slowly towards resolution – but it was a long and twisted ride. However, during those 5-6 months of struggle, I met several strength related goals, and was able to keep working right up until the surgery to replace my shunt valve in late May.
The decision and effort to stay focused helped me to clearly communicate with my doctors, remain calm, and go into surgery in the strongest mental and physical strength.

Stay strong. 
Stay beautiful. 
Stay in the arena. 

- Amy 

​In the late summer of 2003, a vicious forest fire ripped through central Oregon. When it was finally contained after 34 days of incredible battle, the B&B Complex fire had left a devastating mark on over 90,000 acres of pristine woodland. That summer, I spent a week teaching at a music camp in Sisters, Oregon. I’ll never forget the feeling of being so close to such a massive and powerful fire. The air was thick and smoky, and it felt like you could cut it with a knife. Large forest fires often create their own weather patterns, and the atmosphere felt volatile and unpredictable, as storms would rage through for several minutes at a time. The little mountain town that is usually crawling with tourists all summer long was dead, except for the thousands of woodland firefighters who were camped nearby.
 
Fifteen years later, the Santiam Pass still shows the deep scars of that fire. Since my medical team is in Bend, I drive that stretch of highway often, and in all seasons. With any long drive that you make repeatedly, you start to get the rhythm of the mile markers. I know exactly where the cell phone and satellite radio signal coverage cuts in and out, where all the passing lanes are, and the precise point at which you feel like you’ve left the Willamette Valley and officially made it to the mountains. The thing that I love the most about the drive from Salem to Bend is the way the terrain changes so much along the way. From the farm fields and orchards in the valley, to the lakes and huge evergreen trees in the mountains, no matter what time of year you make the drive the scenery always breathtaking. Then when you get up onto the pass, and you see the acres and acres of land still affected by that incredible fire, it’s shocking. Thousands of burned trees stand like charred scarecrows, with their arms stretched to the sky. In the winter months, when the snow is on the ground and the skies are gray, the 10 miles or so of skeleton trees seem more eerie.
 
Last weekend as I drove over to my neuro appointment, I suddenly noticed how much regrowth has started to happen in the pass. It has taken a long time, but the ground cover is vibrant and healthy… bright green against the blue sky, with summer wild flowers scattered among the trees. The mountains stand solid, strong, and unchanged, and the burned trees create a charcoal picture frame for all of this natural beauty. As I drove, it dawned on me that this regrowth is a perfect metaphor for life after challenges. I often speak about the power and peace that comes with accepting the fact that you are going to be different and changed on the other side of major life events – whether that is a new diagnosis, brain surgery, or a relationship change. Sometimes those events leave us feeling like this forest land – devastated and burned out. But faith is the confidence in things unseen-- the belief that eventually the landscape will grow and flourish again, if we simply keep standing tall – reaching for the sky with everything we have left.
 
Pain is going to change you.
You’re going to be different on the other side, and that’s ok.
We’re ok. We are HEALING.
The storms pass, and the wildfires die.
The soul remains, and the heart will stay strong if we will it to do so.
Be willing.
 
Find beauty in the broken.
Love,
Am  
 
for erika
#we.