A couple of weeks ago, someone I know came to me out of the blue, with some heavy news. He had just been diagnosed with cancer, and would be going through surgery and treatment right before the holidays. As we talked for a few minutes, I could tell he was trying hard to be strong and positive about the whole situation. I listened as he told me that he has a family history of this type of cancer, they caught it early, and he knows he’s going to beat it. Even if he was frightened on the inside, he was upbeat and smiling. We talked about mindset, and the game plan. At the end of the conversation, I told him something that I have learned in my own journey - that every experience you go through changes you… it shifts your thoughts, emotions, and approach to life.
On the other side of this challenge, he is going to be a cancer survivor.
But he’s also going to be a person who walked through this dark valley, and come out on the other side… changed.
And depending on how you approach that change, it can be either good or bad - it’s a choice.
In 2013, I started reaching out and connecting with teen and young adult girls with hydrocephalus, and began communicating and supporting them, as a mentor. I had just started talking with the staff at the Hydrocephalus Association about getting involved with advocacy work, and I wanted to find a volunteering niche that made sense for me. I knew that I was born with the gift of connection, and with that, I would find my purpose in supporting other people with hydrocephalus. From the beginning, I found myself having this same conversation with the girls I was working with… as they approached brain surgeries, shunt issues, and difficult life changes. And as time has gone by, I personally have lived this message month after month, year after year.
As we move through life, we are designed to be ever-changing, growing, adapting, and evolving. It’s truly amazing. Although it’s easier to think and meditate on the pleasant experiences that have shaped us into who we are today, there is equal value in the difficult events. The challenges teach us who we are at the core, give a new perspective, and provide a spirit of empathy that we would not otherwise have. But here’s the thing… I believe that I only gain these positive things if I choose to do so.
Everything we experience as humans impacts who we are. We are even affected by a simple conversation. In his best selling book, The Four Agreements, Don Miguel Ruiz teaches this basic principle in the first agreement. Be impeccable with your word, because every word that comes out of your mouth has the power to change another person - to either build them up, or absolutely destroy them. I think of this every day, and try my best to apply it in my exchange with others. Every single interaction has the power to change us.
Since May of 2012, I have had 14 brain surgeries due to hydrocephalus, and a roller coaster of shunt malfunctions, adjustments, and side effects. I deal with all of the issues from the resulting trauma… every single day. Some of that damage is visible to the outside world, but most of it isn’t. Don’t get me wrong, I definitely have my moments of frustration and devastation. It’s natural to do so. But then, I move back into a proactive mindset, as soon as possible. Having hydrocephalus is not going to wreck my story. It’s only one part of who I am as a person, and even though this condition has changed me, it’s also put me on a path of remarkable learning opportunities, and brought people into my life that I truly would never want to live without.
I go through each phase of life with this condition with the following mindset, consciously accepting and processing the fact that I am continuously changing.
Over the past several years, writing has been my outlet of reflection, as I have journaled extensively. Some of this journaling has become part of my blog posts. As a result, my blogging has been a glimpse into how I feel, a window into how I process pain, and insight as to how I view the massive changes that have occurred on the other side of all these life experiences. It has allowed me to share my perspective on different things in life, many of which draw a parallel to the experiences of the people who read what I write. Today, what I want to share is that it’s ok to be different on the other side of a crazy period in life. It’s also ok to feel broken and damaged, exhausted and defeated, because these are the precise times when true strength is revealed. It’s an opportunity to prove that you are willing to stay in the arena, battled and bloodied… and that you are willing to use these intense battles as a springboard that launches you forward… into greater things, and clearer understanding. It’s in my most broken and vulnerable moments, that I have felt the most comfort— in my faith, but also in the most incredibly beautiful human beings, who have simply appeared in my life at the right time.
Be ok with the battle.
Accept it, and stay present as the fight swirls around you.
You’re going to be different on the other side. And that’s ok.
What you choose to do with that is entirely up to you.
Stay in the arena,
The strongest among us are the ones who choose to be so.
- Freddy Sandoval
This post is dedicated to Ava & Kim.... standing with you in this fight. Much love, and many prayers. xo
Dear Friends & Family, Supporters and fellow Hydro Warriors,
I’ve taken a step back from active blogging the past couple months, while I have been working hard on some exciting projects I have coming in 2018. Even though it’s been a quiet period for me, I’ve had it on my heart to write a year-end post. I’ve wrestled a little bit with how to address these past 12 months, and all the shifting and shaking that’s gone on - both publicly and privately. Honestly, this year has completely changed me. It’s pulled me from my comfort zones, and pushed me into vast deserts of vulnerability. I’ve had to rely greatly on my faith in God, and examine my priorities like never before. I’ve become closer to my siblings, and spent more time with my parents. I’m learning to trust a precious few souls who have been unafraid to stand in the trenches with me. In light of all these things, the way I experience life every day has changed, and I wanted to share a few closing thoughts for 2017 with you all.
By all accounts, the past year of my life has been a roller coaster of change and challenge. It’s been kind of like living directly on an active earthquake fault line… the once seemingly solid ground of my personal life, health, and relationships trembling and moving, buckling with uncertainty, again and again.
And with each aftershock, the landscape is left a little different.
Not necessarily worse… just different.
Here’s the thing. In a society where tragedy is glorified by the media, and insecurity is magnified by social media, it’s easy to get caught up in a pattern of self pity and hyper focus on the negative.
"Why do bad things happen to good people?"
“Everyone you see is fighting a battle you know nothing about.”
In my case, these were very real losses— painful hits, that just kept coming. Divorce, multiple brain surgeries and significant health challenges, the loss of my dog, changes in my medical team, etc. etc. So, it would be perfectly acceptable to take some time to wallow in my self pity, and reset.
But, what if it’s not all about me?
What if the events of every day are part of a greater plan… something I can’t grasp unless I focus more on others, and not on myself? What if the losses are actually opportunities, and what if the people who are in my life now are the ones I’m supposed to focus on right now? I know it’s hard to understand, but I am determined to make my best effort to live each day in a space that allows me to make unique and true connections with other people. And more importantly, I have accepted that I don’t need to understand it fully.
In my advocacy work for hydrocephalus, I’ve often explained to people that I wholeheartedly believe that I don’t have to question God, or be angry for the things that I’ve gone through. I simply don’t believe that God owes me an answer. I do, however, believe that if I am willing to take that pain and use it to help other people, it turns into purpose. This is why I have chosen to share my hydrocephalus story with the world, and especially why I continue to focus on connecting and supporting families of young hydro warriors. But, what if this same pain/purpose idea applies to all areas of life? Regardless of your belief system, when you consider the life events that have brought you to this point, what purpose have you found for your pain? Can you use those experiences to better the lives of others?
In closing, I want to acknowledge one more thing. When I found the ability to let go of me, my fears, and the focus on my own problems, I started to see this incredible beauty in the people around me. I can honestly say I have never felt more blessed and safe, even as the battle between my brain and body rages, and my life has been turned upside down by all societal standards.
It’s not all about me.
It’s not even all about you.
It’s about “we”…. sharing the weight of love, life, and struggle— together. Unified and fortified by the strength we offer each other.
Each day is a unique opportunity to move forward, be grateful for one another, and live with loyalty and compassion.
Our choice is in whether we stay… particularly when the road of life becomes difficult.
Definition of the word “stay”:
Happy New Year, friends. Be safe, and be well.
Here’s to the relentless pursuit of everything that’s important.
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.