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.
for Freddy, who keeps me anchored to the truth.
It’s a quiet Sunday afternoon. I’m listening to Jackson Browne and reading back through some journaling I’ve done in the past few months. When I’m sick and having surgeries I definitely find that I write less. Instead, I've made an effort to make short journal entries documenting the day to day events these past few months - as crazy things were unfolding in regards to my health. It feels kind of raw to read about all the little things I have already forgotten about… and I suppose that’s why journaling is so valuable.
The days are filled with important moments, and even the painful moments are important.
Suffering is meaningless, but the courage that we bring to our suffering gives it meaning.
I got home from the hospital a little over a week ago. I posted on social media during the 16-day hospital stay and three surgeries, and then for several days once I was home and starting my recovery. During that time, I received so many amazing messages of encouragement and support and I know there were people praying for me all over the world. It was so humbling and comforting. Words can’t describe how it feels, but I am incredibly grateful. Thank you.
When I started this blog, I made a commitment to share my story with the public – to support other patients and help educate those who were interested in knowing about my life with hydrocephalus. Sometimes I share a lot of detail about the medical aspect of my surgeries, and other times I feel it’s less important to give specifics. At the end of the day, every single patient with hydrocephalus can have a different experience every single time their shunt malfunctions. That’s just the nature of the condition. So instead of telling you each thing that happened during those 16 days, what I want to share is what I learned during this crazy time – in hopes that those things might help others.
Here’s what I learned:
A shunt infection doesn’t always look the way you expect it to.
I’ve never had a shunt infection before, but just like so many hydrocephalus patients and parents out there, it has been my biggest fear. I’ve always heard the classic symptoms to be fever, headache, and vomiting… and that is usually the case. However, my initial symptoms manifested differently, and even though my medical team jumped right on them, I guess I just either ignored the possibility or was hopeful that it would turn out to be nothing to worry about. It wasn’t until the doctors confirmed in the hospital what they had suspected all along, that the brevity of the whole thing sunk in.
The first symptom that showed up for me was a redness and welting directly over my shunt track on my abdomen. I immediately let my neurosurgeon know about it when it showed up, even though it was not accompanied by vomiting, fever, or headache. I actually was feeling pretty good at the time that this all started. I went through two different courses of oral antibiotics, and over those weeks, the severe headache did eventually develop. However, it wasn’t until I was in the hospital with the full-blown infection and my shunt externalized that I had a fever – and I never vomited. Going forward, I will understand that even symptoms that aren’t textbook can lead to a shunt infection. It isn’t going to change the way I live my life – it’s just a new reality.
My hospital has an RV parking area with full hook ups for family members of patients.
Shunt infections often result in multiple surgeries and a long hospital stay. I can’t say enough about the impact that these difficult and frankly inconvenient episodes cause to a family unit or support system of a patient. I am truly lucky that even as a 39-year-old adult patient, I have an incredible mom who accompanies me to every surgery and hospital stay, regardless of how long. I acknowledge that not everyone has that luxury. But during these hospital visits, my mom and I always try to figure out one or two little things that might make the whole thing just a little easier – even if they are small. It’s our tradition to go over these things on our 3-hour drive home from the hospital. I ask, “What were the game-changers, Mom?” As we made the beautiful drive through the sunny Cascade mountains this time, so happy to finally be heading home after almost a month, we came up with this one. St. Charles is a really nice hospital, and my mom usually stays in the room with me – as we only spend one night, maybe two, on the average shunt surgery trip. But on the 4th or 5th night of this stay, just as I was going in for another surgery and then being transferred into the ICU, our favorite nurse on the Neuro floor mentioned to my mom that the hospital has an area of the parking lot with full RV hookups, specifically for families of patients who travel more than 50 miles. My dad was coming over for my surgery, so he was able to bring my mom their RV, and that provided a much more comfortable way for my parents to stay close to me.
I’m not saying this is what you have to do, but just that sometimes focusing on the little “game-changers” make all the difference in these otherwise terrible experiences. Some of our game-changers in the past have been as small as identifying my favorite milkshake on the patient room service menu or remembering noise canceling headphones for my mom so she can rest easier in the room at night. It’s important to acknowledge the little things and constantly learn, as you face forward.
Do the things that are actually within your control… no matter how small.
There were several days during this process where I was so sick that all I could concentrate on was getting through each hour. Within those hours, I had to choose to stay focused on the very few items that I could actually control. In those crazy hours, as I was fighting the fever and trying to stay sane after being in bed for so many days in a row – I could actively participate in my care by doing one thing… drinking water.
By drinking water, I would need to get up to go pee – and by getting up to go pee, I was moving my body. That was what I could do… so I did it. Never underestimate the power of all the small things – it is by the small things that we make big strides.
I am a “learner” – I’m aware that not everyone is naturally inclined to applying themselves to new patterns in times of trouble. But I think there are a few things that are universal – and apply to lots of different things. First off, patience and mental control go a long way… especially in the Intensive Care Unit. The bottom line is that processes in a hospital setting take time – they just don’t happen with the snap of your fingers or a frustrated complaint. And often, the nurses wish that they could serve you faster – they just have to go through the protocol. In these times, I try to remind myself that the guidelines they are following are for my own protection, and that there are lots of reasons to be thankful for the quality of care that I am receiving.
Lastly, remember that there are opportunities to connect and support others in every situation. Each person working in the hospital is a human being with feelings, stresses, and a life worth respecting. In my darkest times during this infection and all the surgeries, I was met by incredible individuals who were not only willing to get down in the trenches and care for me, but also shared a tiny slice of their own life with me. There were conversations that might have seemed insignificant to some but changed me forever. I will never forget this journey, or the people who helped me get through it. They took a road that was filled with pain and suffering-- and paved it smooth with love and compassion.
Thank you for every single prayer, message, and thought. Your love carried me through these days, and your faith held me strong. We’re here on this life path together… maybe for reasons we don’t understand. But we choose to stay – and that is the most beautiful thing you can imagine.
Much love and continued health,
I don't believe in chance meetings.
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.
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.