At the end of last month, my siblings and I took a quick day trip over to the Oregon coast. It was a crazy beautiful day; blue skies and warm ocean air. While we were there, I took a long walk on my own down the beach, to put my feet in the water and breathe. The month of July was surreal and difficult, but having my family together to celebrate my youngest brother’s wedding was exactly what I needed to remind me of why I fight so hard for peace every day.
The ocean always reminds me that life comes in waves. Some waves are nice and calm, lapping at your feet nice and easy – and others are violent and come crashing the shore with a vengeance. As I walked and let my mind wander, I noticed a small black pebble in my path, so I picked it up. I’m not sure why this particular stone caught my eye, but it was smooth and shaped differently from the others that I had seen. I turned it over and over in my hand and noticed that even though it was soft and weathered by the waves, it had a definite irregularity to its shape.
I wondered where it had been; how many different shorelines had it seen prior to me picking it up? What did it look like originally, before the water and rocks of the ocean made it what it is now?
I put it in my pocket and finished my walk.
In a way, I feel like that little black pebble. Although I try to live my life every day with purpose, I’m constantly feeling shaped and re-molded by the situations that keep coming at me like the constant changing tide. The people closest to me know that I work really intentionally to stay in a growth-focused mindset and that I lean heavily on my faith as the battle rages in and around me. I often tell people it’s ok to be different on the other side of trauma – it’s perfectly natural for hard things to change you. However, I believe I have a choice in whether those changes are all negative or if they transform me in a positive way.
I’m not the same pebble I was five years ago. In some ways I’ve lost parts of myself as I’ve fought for my emotional and physical peace – but in other ways I’ve grown more solid in my beliefs, my ability to love, and be loved. For these reasons, I’m grateful for the hard things that have smoothed my surface.
2020 has not been the year most of us were hoping for. When I turned 40 in March I was determined to do as much as possible this year. I made plans with friends to travel, I wanted to see as many people as I could, and I told myself I was going to finally get serious about the book project I have been working on off and on. Then, COVID-19 came along, and everything shifted to accommodate the restrictions and precautions that seemed to instantly change the world we live in. When my travel plans and social life were put on hold indefinitely, I made a decision that with all the time on my own, I was going get serious about healing. My body was still reeling from the mess left by the last 10 surgeries I had-- which all happened over the course of one tumultuous year. Focused on settling my nervous system trauma and repairing my sleep patterns, I started walking every night and went back to a strict anti-inflammatory diet. I walked in the hills of my neighborhood, through areas of town that I haven’t ever paid attention to, and in parks and nature preserves. This routine gave me lots of time to process through the conflicts and pain in my mind and allowed my physical body to find a new rhythm. I was changing, quickly. Over the course of a few months, I lost about 30 pounds, and started to sleep better. And strangely, I felt like I was negotiating with my brain. It was as if I was telling my nervous system, “Look, I’ll put in the work. You know I’ll do what I have to do.” And in exchange, I fully expected improvement.
I wish I could say that all of this was easy. I actually had a few significant setbacks in both pain and pressure during that time, and some of the issues we had been managing since my last brain surgery in late July of 2019 continued. But overall, I was functioning and steadily improving from an overall health standpoint. I started to focus on making it past July 24th, which would have been the one-year mark since that last surgery – a milestone I have only reached once in my history with hydrocephalus. Then, out of the blue, on June 30th, my scalp incision spontaneously split open, exposing my shunt valve, and by the middle of that night I was admitted to the hospital. I was shocked and disappointed, but grateful that I was safe and strong enough for the surgery that followed a couple days later.
Because we didn’t have any idea why the shunt came through my scalp, my neurosurgeon didn’t know what to expect when we went in for surgery. But he told me he suspected the valve had failed and the pressure was pushing the valve through my paper-thin scalp, which has happened before. What we didn’t expect to find was that my valve and both catheters were all completely occluded – I had a fully non-functional shunt – but from a daily living standpoint, I was still functioning. This was pretty crazy, because although I also have an ETV, I have been fully shunt-dependent since 2012.
Cautiously optimistic that perhaps I could just drain off the ETV for a while, my neurosurgeon removed my shunt valve. So, that catches you up to where I’m at medically. It’s been about 6 weeks, and I have fully recovered from the surgery. I’m still walking at least 4-5 days a week, and I’m lifting regularly as well. I went back to work full time almost immediately after the surgery, and I’m staying as busy and active as I can. For me, it’s important to stay moving and in a good routine. That will give me the best chance at being able to adjust to just having the ETV, and not having the assistance of the shunt. It’s weird, because even though my body hates having the shunt, and it historically has required me to have several surgeries a year, it does make me feel better when it’s working. It’s the epitome of a “love-hate” relationship. When I see friends and family and they are so happy that I am finally shunt-free again (I had a period of about 11 years prior to 2012 where I drained solely off the ETV), and it reminds me that this has been their battle too. My parents, siblings, and close circle of friends have literally carried me through the 30 surgeries I’ve had on my brain…. With 20 of those being just in the past few years. Even a short break will be cherished and celebrated as a success, by all of us.
The emotional ups and downs as well as the physical fatigue associated with this whole process leaves me changed – every time. I’m fortified by my people and strengthened by the process. But I always leave the battlefield with a unique clarity. Sometimes that is about my medical team, career, or personal goals, and sometimes it’s about relationships. I often find myself making clear and absolute decisions right after surgery, and I can see things differently. I’m notoriously hard on myself, but these are the times I can look at the whole picture from the outside, granting myself more grace. So even in the difficulty of an unexpected surgery, or repeated trauma, peace is possible.
I picked up that pebble and brought it home from the beach with me. It sits on my dresser, and I have picked it up from time to time over this past month. It’s a good reminder that God’s not done with me yet. It’s the irregularity of the stone, smoothed by the crashing of the waves, that made it what it is before it came into my hand.
My story isn’t over yet, and love can heal and soften all the edges created by the storms of life.
I’m living proof.
Susan K Bowman
8/18/2020 11:23:03 pm
8/19/2020 02:38:52 am
Amy, so glad you are feeling better, so you no longer have a shunt?
8/19/2020 06:19:16 am
You are such a gifted writer and more importantly you are an inspiration! It is an honor to follow your journey🌺. May God continue to give you great peace and strength.
8/19/2020 06:45:31 am
Amy, I have been following your ups and down and you are truly an inspiration. My son, age 8 has had three malfunctions and an infection this year. It has been such a tough road and your words resonate with me. Sending you all the good hydrowarrior vibes and thank you for giving such hope and optimism to this hyro-mama! xo
8/19/2020 02:43:28 pm
It was great once again to read your article. You are so inspiring. My 30 yr old daughter has had a lot of ups and down so I always value your article.
Susan K Bowman
10/30/2020 07:58:57 am
7/6/2021 10:27:13 pm
I am glad to hear that you are doing well. May God continue to bless you.
Amanda N Allen
12/20/2022 05:10:39 pm
I am a fellow hydrocephalus patient, but in my case, I was born early because of it. I've only had six surgeries to date my last one was July 1st 2010. My last shint series back in 2021 shows everything is normal. Due to insurance issues, I can't get updated CT scans until March..
12/21/2022 04:51:04 am
Thank you for sharing your story with me.
Leave a Reply.
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 (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.