More than Words (pre-surgery #15)

As we prepare for another shunt surgery (tomorrow), I’m starting to reflect on the five months that have passed since the two surgeries I had in December. Today I looked back through my journal, reading through all the thoughts and processing I’ve dumped into 150 days worth of pages. In moments of great pain, and on days where even the smallest victories keep me believing, I sit down and put my raw emotions into words. Sometimes those words are shared, but often, they are just for me. As I go back and read them from time to time, they teach me so much about myself. I learn that I’m stronger than I think I am, and that I love harder than I should sometimes. In my relationships, I feel deeply, and I commit fully. In terms of my health, I’ve accepted the challenge of my condition, but I don’t see myself as sick. I’m insanely stubborn. And I’m coming through every life event planning on success, and adjusting as needed. 

I’m often asked for tips and ideas to help patients and family members cope with their life with hydrocephalus. One of the first things I always suggest is that they find a way to express the bottled up emotions that can come from dealing with a chronic condition. If you don’t release all of those thoughts and feelings, they can hold you back when it comes time to communicate with someone close to you, or make clear and quick decisions about something important. For me, I have found that writing is a way for me to decompress, and also is an avenue by which I can share some of those thoughts with others who are experiencing similar things.

My journal reads as a letter to a close friend. It’s filled with joy, sorrow, struggle, and love. Parts of it are poetry and song lyrics, and some is more like a matter-of-fact account of my medical journey. Regardless of what your form of expression may be, make sure it’s always authentic, it’s raw, and ultimately healing to your soul. 


Thank you for all of the encouraging messages and emails this past week.

​Here’s to the relentless pursuit of love, life, and peace. 


Am