The Change (my fight against an invisible condition)

And I hear them saying,
You'll never change things
And no matter what you do
It's still the same thing
But it's not the world that I am changing
I do this so, this world will know
That it will not change me.


I wrote these words to the Garth Brooks song The Change on a post-it note, and put it on my desk when I went back to work a few weeks ago, five days after my latest shunt revision surgery. I needed the reminder. My sixteenth surgery overall, and the sixth in just over a year and a half, happened fast and hit me like a freight train. I had been feeling pretty bad for about 6 weeks, but still functioning until the last weekend in August, when my brain decided it had enough. I suppose I should have been prepared for history to repeat itself, but that’s just not my nature, I guess. We only had three months to heal from the previous surgery, which just doesn’t feel like enough time. However, again and again, my body proves to be strong and resilient. I get through what’s needed, and start moving back towards my own brand of normal in as little time as possible. The hard work we’ve put into my rehabilitation and strength training this past year has been credited with my quick recoveries, and I am eternally grateful for my team.


Recently I’ve had some interesting feedback in regards to me sharing my experiences with hydrocephalus on a public platform, and on social media. It seems that there are some people who don’t understand how and why I push myself so hard, and why someone who looks perfectly fine in photos is going through this much brain surgery in such a short time. As a mentor to young girls with hydro, I’ve had so many discussions on this subject; balancing a condition that is painful and dangerous with the fact that it is often invisible. Mentally, it’s a very lonely and isolated place to hide the suffering, but often it is easier, and sometimes it’s necessary. So, the question rises, why share? It’s only going to make people uncomfortable, and become your identity. Why would you want that? Is it for attention? Or likes? Or comments? 


With all due respect, I don’t share all of the painful moments. For one thing, I don’t think it’s necessary, and it’s not me. I’ve chosen a life of not outwardly showing the physical pain I’m in, until things are really bad. I have been blessed with an amazing life, with incredible people in it, and I would rather share those things and keep the focus on moving forward. And I don’t want or need the attention that comes from posting about the highs and lows of life with hydrocephalus. But yes, I understand that it’s hard for people to understand why. 


I share my life journey for a few very specific reasons: 

• For parents of infants and small children who have been diagnosed with hydrocephalus, so they can have their questions and fears addressed by someone in a very real and non-medical way… by example. I strive to always remind parents that even if their child has a difficult road ahead (and not all all of them do!) that life is beautiful, and well worth the battle. 
• To share the various treatments and therapies that have benefited my medical case, and increased my quality of life. 
• To raise awareness among the people who I have the ability to reach - because public awareness will eventually lead to more research, and more research will hopefully lead to better solutions than the ones we have. 
• And most importantly, to provide much needed support to other people struggling to navigate live with hydrocephalus (or other challenges). The comfort of human connection is something that is crucial to healing and coping. As I’ve mentioned before, we are all traveling parallel paths, and we are fortified by the encouragement and care of others who understand the terrain… even total strangers. 

I am sorry if the photos, posts, and stories of my condition and surgeries are painful to read and see. Truthfully, they are painful for me to write and share. Many times, I’ve had second thoughts before making posts regarding my hydrocephalus, and have gone through some pretty dark times, wondering if I am doing the right thing in being as open as I have been. But I press on, knowing that if each blog or post reaches just one person… someone who needs to know they’re not alone, it will be worth it. 


The Merriam-Webster Dictionary defines the word “advocate” as a person who argues for or supports a cause. In addition to advocating for this cause, I aim to prove to myself, my husband, family and friends, and the whole world, that I can and will get through these experiences, and remain proactive and aggressive. Even on the days when I’m beaten down and negative, I will stay in the arena, and battle back towards the light, seeking peace. 


I do this so this world will know, it will not change me.

In relentless pursuit, 
Amy

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Here's a link to The Change, by Tony Arata, who wrote it. #musicheals