Towards the end of last summer, I was challenged by my neurosurgeon to dedicate 100 days to getting as strong as possible, physically & mentally. He hoped that during that time, I would be able to stay healthy, and I would go into the fall ready for what we already knew was an inevitable shunt surgery. So, along with a couple of my friends and my strength training team, I jumped into an incredible 100 day journey. I committed to posting once a day on my Instagram account— documenting, recognizing, and acknowledging the things I did every day to become stronger. It was really fun on some days, and really challenging on others.
Unfortunately, my brain didn't cooperate, and I had my 16th brain surgery on the 30th day. I took a few days off, then started up again— pressing myself to find the strength in the many tiny victories of recovery… and using my tears to fuel my drive for better days.
I finished my 100 days of strength on Thanksgiving Day. On that day, I reflected on the path I had followed for those three months. The nights in the gym, and the talks with my friends. The brain surgery, and the recovery that followed. The quotes that pushed me to keep going, and the daily battle to stay in the arena. I had finished the challenge, and I was stronger. In that moment of reflection, I was so thankful that I have people in my life who care enough about me to push me relentlessly, and who are never afraid to walk with me through the valley of the shadow of death. We do it together, and we come out stronger.
I’ve had an incredibly difficult year. I’m recovering again from surgery, and it’s been a difficult few weeks. But, today at lunch time, I was looking through the photos on my phone, and I stumbled upon the video montage of the 100 Instagram posts, that I had uploaded to YouTube. It made me feel a little emotional, because it was a reminder of something I have learned this year… That I may feel like I’m struggling right now, but I am in total control of myself, my thinking, and my actions. If I choose to be strong, I am strong. And I choose strength.
Today, I’m going to start a new #100daysofstrength — and this time, it’s different. Last time, Dr. Yundt challenged me, and this time, I am challenging myself. I’m not able to work out for another week or so, but every day I will honor the journey to more mental, emotional, spiritual, and then… physical strength.
Follow my #100daysofstrength on Instagram @stayinthearena
On the counter, there’s a plastic model of a brain, made up of 8 pieces. If he’s running behind schedule, I take it apart while I wait, and put it back together. I reflect on the simplicity and complexity of this incredible organ, and the power it has to change the world. I carefully put the model back together, and my heart aches that my own brain is so broken. Reassembling the parts brings me a certain peace, as if it symbolizes the journey we take, time and time again. If only it was that easy. I sit in the chair next to the exam table, and wait for closure, approval, and comfort.
Then he’s there, and I get the word. I hear the phrase, and I absorb the challenge. Go get stronger. I feel the concern he tries to hide, and I see the urgency that we experience every day. Over the past few years, I’ve learned to read that resolve in his expression. He’s proud of me, and so happy I’m ok— but we need to be relentless in the pursuit of recovery. Stronger. Go as far forward as possible, before we get pulled backwards again. Stronger, so we can face the unknown. Stronger, so I can walk through the valley of the shadow of death, and fear no evil. Stronger, so I can still be Amy when they wake me up. Stronger.
Right now, I am obsessed with gaining strength, because I can feel that there are tough days coming. It’s a sensation I can’t explain, and there are no words to describe the fear I’m suppressing. On the outside, my walls are up, hiding the fact that behind the brick and mortar, the foundations are cracked already, and I am bracing myself for the fall. I lift even when I hurt, and leave the pain on the gym floor. Every day I keep moving, and I keep pushing. I will be stronger - a little bit, every single day.
If nothing else, I will be strong enough to start over, if I have to.
I’ve always been strong enough, in ways the world will not see.
There’s a hole in the middle of my heart again
But I’m not afraid to start again
Start again, I’m gonna start again
There’s a hole in the middle and it never mends
It never mends
But I’ve got to start again
(Conrad Sewell - Start Again)
Follow my #100daysofstrength on my Instagram account @stayinthearena
In the summer of 2012, I was healing from my shunt re-placement surgery, and was encouraged by my neurosurgeon to work on my physical fitness, and specifically to get my body fat percentage down. I was not terribly overweight, and had never been concerned about body image, so I was hesitant to work with a personal trainer. In light of the challenging physical condition I was in at the time (no strength and zero balance!), working with a trainer could have easily been a disaster, if it wasn’t the right person. Clifton met Joe Locascio, at trainer at our gym, chatted with him a bit, and felt like he was a good match for me. Trusting my husband’s judgment, I went forward - and he was right, Joe was absolutely the right fit, wasn't intimidated by my hydrocephalus, and really wanted to help us. The relationship that formed those first few difficult months resulted in an amazing friendship, and ultimately led to some pretty significant changes in our lifestyle. The strength training and balance work that I started with Joe also led to the current training I do at Courthouse Performance Training here in Salem, Oregon. Being physically strong has been a game-changer for me, and as you all know, is a major component in how we prepare my body for the battles of surgery, and rehabilitate it after the trauma. But the guidance and advice he gave us regarding my nutrition was the most important thing I took away from the training, and started me back on the road to overall health.
Joe introduced me to the concept of an anti-inflammatory diet, and I began to learn about the Paleo lifestyle. Eliminating grains, processed sugar, and processed dairy from my diet greatly reduced the stress and inflammation in my body. I found a lot of great resources and support online, and purchased a book called Practical Paleo, by Diane Sanfilippo. In this book, she outlines different protocols based on your specific health goals, and there was a section on Neurological Health. I was fortunate enough to meet and connect with Diane at a book signing in Portland, and she and her team have been so supportive and gracious to me.
Two years ago today, Diane featured my story on her nationally recognized Paleo blog, www.balancedbites.com - The feedback I received from the article was amazing, and it was the first time that I realized that I could impact other people by sharing what had helped me to manage my hydro. So, here we are, I now have a blog of my own… I really want to thank Diane for the inspiration she gave me to give back, and all of the incredible connections I have made in the Paleo community due to her featuring me on Balanced Bites.
As a result of these changes we made to my diet, and my strength training with Joe, I am a completely different person physically. I lost over 50 pounds of body fat and gained 10 pounds of lean mass (muscle) in the first year, and went from a size 14 to a size 4 in just 9 months. It was a drastic shift, and I know that being in better shape has made a big difference to reduce how hard my body and brain have had to work to get me through the repeated shunt surgeries. My neurosurgeon has been very supportive of this anti-inflammatory diet, as he believes that it assists my body in healing. I encourage everyone to look at their nutrition as a major component in the management of hydrocephalus - as what we eat and drink not only affects healing after surgery, but it also directly affects our production and absorption of CSF. Consult with your medical team to see if the Paleo diet or something similar could be a benefit for you! You can also check the Treatments & Therapies page on my website, and the Resources page - for more information and links.
It’s important to be willing to do whatever it takes to keep moving forward. For me, being strong and eating right helps me to feel like I’m staying “ready” for whatever lies around the bend. I might not be able to control what happens with my shunt, but I can work hard to keep the rest of my body healthy and happy… Which means I lift kettlebells and eat bacon on a regular basis.
Stay in the arena.
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 (x21), 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.