Friday, March 20, 2020
Good morning Friends and fellow Hydro Warriors,
In light of the recent pandemic developments and global health crisis, I wanted to make time to sit down and write a message to all my friends in the hydrocephalus community and beyond. There is a new and increased need for information, support, and comfort as people all around the world are isolated and so many things are in a state of unprecedented uncertainty.
If you have followed my story or have read my blogs in the past, you know that I write and share because I believe that it’s is one way to give purpose to the pain and difficulties I’ve experienced in my own journey. I know there are so many patients and families around the world who are dealing with hydrocephalus without the support that I’ve been blessed with. So, I want to start by saying this… I’m here. I might be on the other side of the country, or the other side of the planet from you – but I am standing in this darkness with you as we all navigate the new normal with regards to everyday life and our healthcare systems. Even though I can’t offer medical guidance, I can offer friendship.
I can offer my own story.
And I can listen to yours.
This morning I wanted to share a couple of random thoughts.
First, I want to take time to acknowledge that this whole thing is really scary and unsettling for a lot of people. For those of us who have a condition like hydrocephalus, it’s terrifying to constantly be told that the hospital system is overwhelmed and running low on supplies, etc. The simple truth is that none of us know when we will need to have immediate care for complications with hydrocephalus – let alone the risks of coronavirus. I’ve learned over the past few years to allow myself to identify and honor these real fears for a moment, then say a prayer or do a meditation that encourages my mind to release those thoughts. Some days, this is just a one-time occurrence, and I move forward with my day. But other times, this process is a continual loop for an hour or two… or the whole day. And that’s ok. Anxiety and fear are both paralyzing emotions, but they can often be controlled by response. You can choose to address them, then actively let them go. One minute at a time.
The other thing I want to talk about is the importance of maintaining emotional control in our communication. In uncertain times, the words you use and the things you say (both verbally and internally) go a long way in shaping our experience. Science has proven that the power of spoken word has unprecedented effect on our physical and emotional health. And the crazy thing is that you don’t even have to believe the words you say… if you just keep saying them, you will eventually change your perception to match the expression. Words have a unique power to change your life and the world around you.
If you choose to say things that are hopeful, you will be more hopeful.
If you decide to make statements that are filled with love and compassion, you will feel more love and compassion.
If you express peace, you will be more at peace.
These choices will carry over to the people you interact with. The more hopeful, loving, and peaceful your words are, the more others will feel comforted.
In his best-selling book The Four Agreements, Don Miguel Ruiz identifies the first principle to live successfully as this: Be impeccable with your word. Because I feel so strongly about this first agreement, I surround myself with positive and uplifting words. The walls of my bedroom are filled with intentional word-based artwork. I regularly write encouraging statements on post-it notes and stick them to my mirror where I will see them and subconsciously internalize them. These notes include bible verses, song lyrics, and statements I want to incorporate into my daily affirmations. I read them silently, and I say them out loud. This has been a great way for me to actively influence the narrative in my mind. It might work for you, or you might find another technique that fits you better. Be creative! Find and use words that give life.
I am committed to finding the beauty in broken moments in life, and often that beauty comes in the form of human connection. Some of the most amazing friendships and relationships in my life were planted and cultivated in the ruins of shared trauma. If you are lonely or isolated, I’m here. Send me a message or email via this site or engage on Instagram (@stayinthearena).
Keep on walking.
We’ll walk together.
Last month I took a quick weekend trip to Boise to see one of my closest friends. I was excited to be able to finally take a mini vacation, after needing to cancel several scheduled trips in the past 12 months. Since it was my first time on a plane in almost a year, I was a little anxious to see how my brain would handle all the necessary evils of travel. But I made it through the airport without getting too overwhelmed, and I settled into my seat for the flight. As we taxied to the runway, I closed my eyes and said a quick prayer of gratitude. I opened my eyes and thought about the shunt infection and six surgeries this year, followed directly by losing a close friend in a tragic accident, and trying to pull things together at work. Even though it’s been the most challenging year of my life, I was healthy enough to take this quick break and see Andrea. As the plane took off, I looked out the window.
It was a beautiful day in Portland, and although it’s getting later in the fall, the trees are still flaming with brilliant colors. Maybe it was because I am feeling more reflective and raw right now, or maybe it’s because I haven’t seen that bird’s eye view of Portland in a long time. But in that moment, I had a perspective of the landscape that I’ve never had before. I noticed how varied the terrain is in Oregon – with the trees, rivers, valleys and hills. Mount Hood was absolutely beautiful as we flew by the snow-capped peak. The roads in Portland are twisted and intertwined, as opposed to being laid out in a perfect grid like some flatter and newer communities. As the plane ascended higher and higher, the details turned into mere texture… the valleys appeared more like divots and the hills seemed more like little bumps. As I watched everything get smaller, I saw the incredible beauty of the whole picture. This is my Oregon – the place I get to live and love, and the battlefield on which I get to fight through all I’ve been through. It suddenly dawned on me that this is an interesting analogy of life’s journey. In the day to day moments of challenge and pain, we can only see the stretch of road that is immediately in front of us. The valleys seem like deep ravines that take immense effort to crawl out of, and the hills seem like they take forever to climb. While there are pretty things around us when we look for them, we don’t see the whole picture for what it is… a complex masterpiece of winding roads and beautiful landscape. If only we could rise above the hard stuff, we’d see it fade into mere texture as it gets further and further in the distance.
Changes in life are difficult to navigate sometimes. It feels confusing and often exhausting to process all the little ups and downs. If I’ve learned one thing this year, it’s that God never leaves me in the dark crevices of trauma. Instead, I feel like He’s been there when I’ve been most desperate – willing to sit with me quietly in the cool black sadness, until I’m ready to move towards the light again. And somehow, I’ve actually felt more spiritually grounded amidst all the chaos. My choice lies in whether I will respond to the love around me – the love that has lifted and held me through the stormiest days and the darkest nights.
As the airplane lifted through the cloud cover, I looked at the white, misty veil that covered the entire landscape with a layer of soft comfort. As soon as we were above those clouds, the bumps and divots of the terrain were concealed by a blanket of white. I remembered back to a morning this August, when I was battling through severe physical anxiety symptoms after my last surgery. As my heart was racing and I couldn’t calm it down enough to drive to work, I texted my dear friend MacKenzie, and asked her to pray for me. I’ll never forget her words.
“God, like a weighted blanket I just pray that you would put the weight
of your peace over Amy’s whole body today.”
And it struck me that the cloud cover is kind of like that weighted blanket, filling all the low points with grace and soothing. God’s love covers the whole journey – the whole picture – including the mountains and valleys, rivers and roads. It’s not that the challenges aren’t still there – but I am covered. I can rest in that safety, and it keeps me moving through the hard things, even when all I can see is the next roadblock that I’ve got to get through.
Success in this life comes from truly loving the work it takes to build the road to where you’re going. It comes from being thankful for the challenges, because of the relationships and lessons that the challenges bring.
It comes from finding satisfaction in the growing.
From finding rhythm in the doing.
Finding comfort in the loving.
And finding purpose in the giving.
These are the mountain peaks in life, and they are well worth trudging through the deserts and swamps to get there. This is how we find peace-- Traveling through the world, covered in a weighted blanket of grace.
It’s no secret that I am so excited for the change in seasons. I love the fall in Oregon. I truly love everything about the fall – the cooler temperatures, the rain, sweaters, and football games. My favorite part about autumn where I live is the obvious shift in the position of the sun in the sky – which makes the light so filtered and beautiful, especially in the afternoon. But there’s nothing like the glorious palate of colors as the leaves change to red, orange and bright yellow against a blue sky. It’s so spectacular, and I can’t wait for it every year. But this year I’m even more excited – as this spring and summer were rough for me physically and emotionally. I’m so ready for a change.
The beautiful thing about the changes that the trees go through in the fall is that the color and drama that manifests is actually a visual signal that the leaves are dying. As the trees are losing their current covering, the brilliant color and dramatic changes that occur are actually part of the process – a symbol of death and future renewal. And just like the leaves, so many things in life have a way of being breathtaking and theatrical as they change. Shunt surgery is one example. As the shunt begins to malfunction, life slowly starts to shift. That’s like the first hint of fall color. Then there’s a lot of appointments, decisions, and usually pain. Like the brilliant colors of the leaves, the situation is ever changing. Physically and mentally I battle, and I go through a roller coaster of medical attention and a firestorm of frustration that finally ends with brain surgery. As the actual act of having surgery has become more frequent for me in the past few years, it feels like letting go and accepting that we’re to that point again. Mentally I fight so hard against it, right up until I hear the final decision from my neurosurgeon. Then I melt down and cry, accept where I’m at, and finally let go. I feel like the whole timeline of the shunt malfunction or failure is like the fall leaves in the sense that there is a process that has a lot of phases. The colors of my pain and emotion become more and more intense, until they finally let go and the surgery happens – like the leaves falling. This process is necessary in order to reset physically and mentally and start over again.
As much as the fiery colors of anger and frustration before shunt surgery are like the fall leaves, the depression and anxiety afterwards are like the grays of winter. When I get home from the hospital, there are quiet days where I’m alone in my healing. I’m sleeping a lot, and everyone has returned to their daily routines. It’s not that I don’t see or talk to anyone, but there is a lot less interaction for a certain period of time. This isolation is necessary, as the rest is crucial to healing body, nervous system, and mind. Accepting that there are seasons of emotion that accompany my physical challenges has been an area that I’ve had to actively work on in the past few years. Even though I am a positive and driven person, I have had learn to go through these seasons appreciating them for what they are – for what I am becoming in the changes. Knowing each period of difficulty doesn’t last forever keeps me moving – and has allowed me to slow down and acknowledge where I’m at in the process.
My surgeries and shunt infection this summer felt like a multiple-round all-out prize fight. I got knocked down six times-- but got up seven. I was strong going into the arena and somehow, I was stronger when I left-- but my body and heart were beat to a pulp, literally and figuratively. Even though I was grateful for the journey and everyone who took incredible care of me during the process, I was affected in ways I couldn’t see. Trauma and antibiotics changed my body on a molecular level, and about a week after my last surgery, I experienced my first panic attack. The anxiety symptoms in the weeks that followed were exhausting, frustrating and completely foreign to me. I spent hours walking and praying, begging God for understanding. When my chest would tighten and my heart would race out of control, movement was one of the only things that helped. I felt like I couldn’t breathe, but I knew I could. I felt like I was dying, but I knew I wasn’t. My mind was at peace, but my physical body was raging. I was experiencing the aftermath of everything that I had gone through – and I was very aware of it. I worked with my doctors to understand and treat what was going on, and eventually the season passed. But those few weeks felt like the ultimate end to fall, the time when after all the leaves have turned colors and held on through the rainstorms in autumn, they finally let go – and fall to the ground in a final show of surrender. My brain was done. And I acknowledged it, I appreciated the process, and I have allowed myself to move into a period of winter – of quiet and solitude. I’m processing through sadness and grief, sitting in the monochromatic feelings, knowing that the cold and lonely days will pass if I continue to move through them.
As time goes, I’m trying my best to be present in my healing. There is value in this time of quiet, because I need it to regenerate and reset. Everything in nature was designed to experience this cycle – it’s natural, and it’s absolutely crucial to forward progress. When the spring comes and the new growth pushes through, I will rejoice in that change as well. I’m always amazed when violet colored crocuses will poke their way through half frozen ground – the first sign that spring is coming. And before I know it, little pink and white blossoms will open on the fruit trees and parts of the Willamette Valley feel like a bed of cotton candy. The ultimate example of finding beauty in the broken moments is knowing that none of this is possible without those months where everything lies dormant. As I reflect on the fall, and move through the winter, I will remain grateful for the process, and continue to seek peace despite the hurt I’ve experienced.
We were made for seasons.
We’ll be ok.
for hadassah - xo
On September 1, 2019 I lost one of my best friends.
My name is Amy but friends and family call me Am. I am a lover of dogs, good whiskey, and strength training. I'm a brain surgery survivor (x29), a fiddle player, a construction designer, and a boxing enthusiast. I have six real siblings, and five fake brothers. I love deeply, and consider my close friends to be family.