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.