No more brain surgery.
No more BS.
No more bullshit.
That's a dream, and a goal, for so many patients and families who are living with hydrocephalus every day. We wake up each day, wondering if that morning headache is just a result of spending the night in a horizontal position, or if it’s the beginning of the end…. again. There’s a meme that floats around the hydrocephalus community on social media, that says “What if the only way to get rid of your headache was brain surgery?” And I think that’s how we all feel, in a way. For so many, hydrocephalus feels like a lifetime membership to the Brain Surgery For Life Club - and rightfully so.
Every 15 minutes, someone in the United States has brain surgery related to hydrocephalus.
There are 1 million known cases of hydrocephalus in the United States. A large part of that patient population is either pediatrics or elderly.
There is no cure.
The only treatment paths are brain surgery related.
When I was contacted a couple of months ago by the Hydrocephalus Association about using my image in their current #NoMoreBS campaign, they asked me what important life events hydrocephalus had interrupted, or taken away from me. What moments in my life were stolen by brain surgery, and couldn’t be returned? I thought a long time about what my personal contribution to this campaign would be, and what I’ve missed out on because I was in the hospital, or home with a killer headache. I talked with my parents & siblings, healthcare providers & therapists, and close friends about this. Truthfully, it was a really difficult question for me to answer. It was hard not because there weren’t any events that I’ve missed out on… but because this question challenged the hard-wired resolve that I have to keep that pain locked up and behind me at all times. I don’t ever want to dwell on the negative things that have happened in my life - I truly try to practice what I preach… to stay in the moment, chin up, eyes forward, in relentless pursuit of what’s important. This inquiry made me go back and think about all those hard times, and relive the disappointments and frustrations. Here is what I concluded.
For me, it hasn’t been about the individual events that I’ve missed.
Sure, I’ve missed vacations, birthday parties, much of my senior year of high school, etc. My college years were delayed while we established a grip on my health. My adult life has been a crazy ride of difficult surgeries, lost relationships, and personal struggles to stay on track and moving forward. But when I look at my life today, and think about how it’s been affected by living with this condition, I’ve realized that what I have actually given up is the idea of security.
Security is an interesting concept, and maybe somewhat of a mystical destination. I really don’t believe there is any true security in life - there is only a perceived concept of control. We make plans and goals for relationships, career, and activities - but often we just count on those things happening. When it comes to my hydrocephalus, I’ve realized that I can plan all I want, but I just have to maintain my flexibility. And ultimately that’s ok - I believe that I can make an absolutely beautiful life despite all that insecurity… if I choose to do so. It comes down to a very simple but powerful concept, by which I live my life every day. I have no control over what happens to me, but I have 100% control of how I respond. Likewise, I have no control over the thoughts that come into my head, but I have 100% control of my active thinking. A perfect example of this is that you would not be reading this blog post, if I had not struggled with the diagnosis and life path of hydrocephalus. I pleaded with God to show me the purpose for this pain, and then followed the path that I believe was laid out for me - which was to share my story, and support other people in their own journey. I have made an active choice to respond to the call to live and love between the madness. This doesn’t mean that I am ignoring what has been taken from me… but I am choosing to use that pain to learn and grow every day.
Those of you who follow my story on social media know that in the past several weeks, I have had a really hard time physically. It was the ultimate topper to a really crazy and difficult summer, medically. I’ve had several surgeries, and a major infection scare in the past few months. Some of what I’ve gone through hasn’t even been shared publicly, because I needed to keep some of it private in order to maintain my mental clarity. But this weekend, as I look at where I am right now, I feel so much peace. I see my brain’s ability to bounce back, the opportunities I have been presented with, and the incredible people who form my inner circle and my international support network… and I am so happy. I am so blessed. I, Amy Thomas, am going to live in that space. I’m going to be thankful, and I’m going to respond to the physical, emotional, and mental challenges that hydrocephalus brings me every day with as much grace and gratitude that I can possibly muster. I am going to love harder than any pain that has ever rocked my soul. That’s a promise.
And stay in the arena.
All my best,
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.