8/13/19 My alarm clock went off at 5am this morning for the first time in about a month. As the music started to play, I rolled over in bed and listened to the lyrics. There are times when life seems bigger than you, and the world comes crumbling down. The strength in your heart will see you through and become a jewel in your crown. Don’t chase the past, because you can’t change a thing It’s gone, there’s nothing to do. Don’t count on the future, it’s only a dream Today’s when life starts new This is the first verse of the song Keep On Walking, which is a song that was written for me by my parents and Chris Arellano in 2017 when I was going through a particularly difficult time. I have it play as my alarm on my phone every morning as a reminder that in order to get past the hard times, you have to be willing to walk through them. I love this song, but don’t get me wrong – it’s still my alarm clock! Most of the time I reach over and stop the music as soon as it starts. But then there are the days when I let the whole song play, and I listen to the words and smile. Once the music stopped, I got up and walked into the kitchen to get some coffee. On the way, I grabbed my laptop and reached into the jar I have on my desk. The jar is full of scraps of paper with writing prompts, waiting for me like little fortune cookie papers. All of the prompts are from a list that I made several months ago for my writing coach. Each statement starts with the words “I have found peace…” I didn’t look at the piece of paper I chose until I sat down with my coffee. I have found peace medically by establishing a baseline in my quality of life and creating routines that support that baseline. It seems fitting that I chose this prompt today – on the first day that I am attempting to return to my usual weekday morning routine. I used to hate mornings, but a couple of years ago I changed my daily schedule to include a couple of hours to myself early in the morning before work. The house is quiet at 5am, and I can spend some uninterrupted time praying, meditating and studying. Sometimes I read, and sometimes I write. It’s become a routine that I value so much, because it starts the day with the same clear-minded peace regardless of how I feel physically. I do my best to keep this time consistently even when I am struggling – and it’s one of the first things I try to get back when I have surgery or a period of trouble with my shunt. The statement “I have found peace medically…” is an interesting one for me right now. After the summer I’ve had, I feel like an embattled warrior that has just come back from a bloody battle. But there’s no question that I still feel peace – even medically. Keeping my routines does a lot for me mentally, but physically I have found that it’s the one thing that really soothes my nervous system trauma and allows for better rest and faster healing. Human bodies crave rhythm. Without getting into too technical of an explanation, the need for rhythm has a lot to do with the relationship between the vagus nerve system and the heart and lungs. We are created to find natural intervals in time, seasons, and movement. It’s why music is so healing, and swinging on a swing set calms us down. It’s why breathing rhythmically can stop feelings of anxiety and help the nervous system get into a parasympathetic (resting) response. Several years ago, I started studying the effect of trauma on the central nervous system (CNS). Under the care of a couple of really talented therapists, I was able to better understand the damage that has been done to my own CNS through repeated surgeries and the roller coaster of pressure and pain created by hydrocephalus. I believe that understanding this trauma and how it physically manifests in the body has allowed me to create patterns and rhythms in my life that have assisted my body in recovering from all the continuing trauma. And truthfully, this year has been the hardest for me to date – so never has it been more crucial to my wellbeing. I feel like I’m reminded every day, and sometimes those reminders come in unexpected ways. On one of my first days back to work in July, I was driving to a job site and listening to a podcast called The Pivot, with Andrew Osenga. I love listening to this podcast, because Andrew interviews people (mostly musicians) who have gone through seasons of great change in their life, and instead of falling apart, they have chosen to pivot – and go another direction. I find the episodes to be so encouraging. That particular morning, I was listening to an episode with Charlie Peacock, an accomplished record producer, musician and artist. Most of the discussion was about his career in music, but then he started talking about the point in his life when he was forced to pivot. He developed a condition called central sensitization syndrome, where essentially the CNS gets stuck in a sympathetic (fight or flight) response. Even though it’s not the same as what I have experienced, as I listened to him describe his symptoms and how it changed his life I couldn’t stop the tears from running down my face. I was so exhausted, and I hurt so bad from everything I was going through. Just days before, I had been in the hospital for almost three weeks. I was desperately seeking my new normal, and I was struggling to find that balance in light of everything I was going through physically, mentally, and emotionally. If you are going through a difficult season in your life, I want to encourage you. Maybe you are battling hydrocephalus, or maybe you are just going through a big life change in which you are needing to pivot. I encourage you to find one tiny thing every couple days that you can do daily- preferably at the same time each day. I actually write these things down as I add them to my routine. It’s hard, and it takes dedication. But as the weeks go by, you will find your rhythm again. We are all wandering through this life, finding our way as we go. I’ve learned just enough about neuroscience to know that so much of the trauma can be healed, if I am diligent and patient. During this process I rely heavily on my faith – it comforts me to know I am never alone on this path. As my body heals, so does my heart. Stay strong, my friends. Stay beautiful. Stay in the arena. Peace, Am
11 Comments
kacey
8/18/2019 10:01:48 am
You are not just a hope for parents of children with hydrocephalus you are an encouragement for anyone who’s raising kids with big T trauma, and not just parents. You are a light in this world friend! Keep shining!
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amy
8/19/2019 10:08:59 am
thank you, dear. I appreciate you so much.
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Hudco.jim
8/18/2019 12:19:11 pm
Thank you for your inspiration
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amy
8/19/2019 10:09:36 am
thank you, Jim.
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Mom Kay
8/18/2019 03:39:17 pm
Hi. Sweetie.
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amy
8/19/2019 10:10:20 am
thank you so much. I love you too. xo Am
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8/19/2019 04:31:21 am
I am not a musician but I love music and it's messages. It draws me closer to God which helps get me through hard times. I am blessed that I have not had the continual complications with hydrocephalus you have had. I have had 2 shunt revisions since 1965 when my shunt was originally implanted. I have learned that there are things in life I cannot control, even though I want to. A song that really speaks to this is "Control" by Tenth Avenue North.
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amy
8/19/2019 10:11:56 am
Thank you so much for this - I love Tenth Avenue North. Music is amazing, and is a part of my life every day. Music truly heals.
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Lisa
8/19/2019 08:32:22 pm
Wishing you medical peace, health and happiness as always! I love you. 😘
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Amy
8/20/2019 07:13:20 am
🖤
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Jim Hudsonhudco.jim
8/21/2019 09:13:20 am
I use the lyrics as,my morning prayer
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AuthorMy 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. Archives
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