Open up, Buttercup

This morning I woke up to an interesting milestone… 1,000 followers on Instagram. 

In comparison to many of the fitness, golf, and nutrition IG accounts that I actively follow, 1,000 is a very small number, but for me, Instagram is where this public journey started. It’s never been about the number of people who are reading and watching my story from afar. I am humbled and inspired by all of the friends I have “met” online - so many beautiful, kind, brave souls. Some share similar health battles, and others have the same hobbies and interests - but they have simply reached out to connect, and the support I have received through the power of social media has been an unexpected and amazing blessing. Over the past couple of years, the most incredible friendships have formed with people I may never even meet in person, due to geographical distance. 

I wasn’t always open to sharing my life with the world. I was diagnosed with hydrocephalus at age 17, and lived with it for over a decade with almost no one other than my family and close friends knowing. I kept it quiet, mostly because I believed that nobody really wants to know if someone is sick. Then, in 2013, I was seeing a psychologist who specializes in patients dealing with chronic illness, and he suggested that I start blogging to share my story with other people. I cringed at the thought, and resisted big time. His point was that there were thousands of people out there that were dealing with similar circumstances, and that it could be a positive experience for me to connect with those people. The vulnerability of allowing people to see this part of my life was really scary for me, but eventually I agreed to give it a try. 

I decided to start by using some hydrocephalus related hashtags on my existing Instagram account. I slowly began to integrate my story into my online presence, and I was shocked that almost instantly I connected with other people who had parallel paths. I was able to support a few of those first connections through their diagnoses, shunt placement and ETV surgeries, revisions, and daily life with hydrocephalus. In turn, they supported me as I began a barrage of shunt revision surgeries that has not let up for three years now. Over time, the number of people following my Instagram account due to the hydrocephalus related posts has grown by the hundreds, and many of those people are either hydro patients themselves, or parents of kids who suffer from this condition. 

It took me some time to realize that the doctor was right. While there are certain circumstances and situations in life where keeping your personal or health battles private is beneficial, and even necessary, there is also value in allowing people in. For me, this is an ongoing process of growth - and one that I am not even close to having a grip on… but this road has changed my life. As a result of being more open, I see myself and my journey differently, appreciate my strengths and recognize my weaknesses, and have been inspired to take the next steps in public advocacy for hydrocephalus…. including the launch of this website and blog. Two years ago I began to actively communicate and mentor young women who suffer from hydrocephalus, and have become more involved in raising awareness for ways to live positively with the challenges that hydro can bring to one’s life. I see myself as unbelievably blessed, despite my pain and surgeries, and I want to share the fire that I have to fight through the bullshit. I constantly try to encourage other patients to push themselves towards better overall health, mental strength, and self care. 

Although the internet provides a vast source of information and opportunities for contact with like-minded people, you have to be very careful about where you are getting your information. A great example of this is something my husband deals with constantly in his career as a firefighter/paramedic. Almost every shift, he goes on patients who have called in because they looked something up on Google, and they are certain they are having a major medical event. I recommend only obtaining medical advice from your own physicians, or a reliable source such as the Hydrocephalus Association’s website. And the same goes for social media; be mindful that so much of the input and posts about hydrocephalus may be negative, and try to gravitate towards accounts that encourage you to live a more positive lifestyle. Some of my best connections have come from meeting other people who have the same approach as we do. I’m definitely not alone. There are others out there who are pushing for better, searching for solutions, and living a beautiful life in between all of the crazy surgeries and drama. These people push me, support me, and inspire me to keep going. 

I had my last two surgeries on December 10th and December 16th. That week, I received hundreds of messages of encouragement from all over the world… including Australia, Italy,  Denmark, England, Canada, and all over the United States. A couple of weeks ago I posted an article on this blog that was viewed over 2300 times in the first weekend, and shared all over Facebook. It’s still tough to grasp that my willingness to share this difficult and painful part of our lives has impacted so many strangers, but it goes to show how much need there is for positive role models in hydrocephalus, and many other conditions. Not everyone has the ability to be open, because it is really hard. I challenge people who choose to share to reach out and form those bonds with people - you never know when you might be providing the encouragement that is getting the someone through a difficult time. 

The ultimate human need is for true connection with other humans. Thich Nhat Hanh teaches that the most important thing you can communicate to another person is this: “Darling, I am here for you.” In closing, I think that is what this is all about… Just knowing we are all in this together makes it a little easier to get up and fight every day. 

Open up, Buttercup. 

In relentless pursuit,
Amy
@amy_booher on Instagram