Fear, to a great extent, is born of a story we tell ourselves, and so I chose to tell myself a different story from the one women are told. I decided I was safe. I was strong. I was brave. That nothing could vanquish me. Insisting on this story was a form of mind control, but for the most part, it worked. Every time I felt something horrible cohering in my imagination, I pushed it away. I simply did not let myself become afraid. Fear begets fear. Power begets power. I willed myself to beget power. And it wasn’t long before I actually wasn’t afraid.
Recently I’ve received several messages from parents of kids or babies with hydrocephalus, asking if I have any advice for how to proceed and support their children, with all the uncertainty and challenge that lay ahead. This question is one that I get often. I usually point people to my website, where they can read more about my story and the various treatments that we use to manage my health, and where I often blog about the emotional and mental toll that this condition can have on the patient, and everyone involved.
But the best advice I have to offer is to not be afraid.
Don’t be afraid to ask questions. They say that nobody has ever died from being too curious. Understanding that hydrocephalus is a complicated and totally frustrating condition to treat, approach your doctors with questions that clarify what their game plan is. Even if there is no clear answer to what’s going on during a time of illness (because that is often the case, unfortunately), knowing what the potential timelines and possible treatment paths will be will help you to prepare, and feel more at ease.
Don’t be afraid to know as much as you possibly can about hydrocephalus, even if it’s overwhelming. Knowledge is powerful, and learning could lead you to a path of treatment that could change your life.
Don’t be afraid to keep searching until you find a team of medical professionals that you can trust and communicate with. I learned this from my parents, who have always pushed for the absolute best in medical care for myself and my sisters. If you see a physician, and feel that they aren’t a good fit for you, just keep looking. Life with hydrocephalus is a long and winding road, and you are going to be in it for the long haul with your doctors and therapists. Even if you don’t have a lot of complications, it’s important to have that team assembled and established, just in case things change.
Don’t be afraid of brain surgery. The alternative of being sick with a malfunctioning shunt (or worse) is much harder than healing from surgery. This is something I tell parents over and over again. It’s really hard when your child is young, and/or non-verbal, to understand what they are going through medically when the shunt isn’t working properly. Guilt and overwhelming sadness creep in as the word “surgery” enters the discussions. But never make decisions about surgery based on fear. Relief is so precious, and life is just on the other side of that difficult decision.
Don’t be afraid to work at being healthy in every way you possibly can. My team and I preach this multi-disciplinary care approach to wellness, and I do my best to lead by example. Work at the mental and emotional battle as well, and seek help in this area if you need to (this goes for both patients and caregivers). Exercise, various therapies, diet, and lifestyle will not cure your hydrocephalus, but can greatly improve your overall quality of life.
Don’t be afraid to live and love between the madness. Make goals and push to achieve them. Work and enjoy your career, if you are able. Love your friends and family, and those in your support system. Let your life be an example of rising above the challenge, without hydrocephalus becoming your only identity.
And don’t be afraid of what lies ahead. All we ever have is the present moment. Seize it and feel every emotion, sensation, and minute that passes, good or bad. We only have to live each difficult moment once, but we also only get one shot at all of the beautiful moments in life.
Stay present. And don’t let fear define your journey.
Stay in the arena,
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 (x28), 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.