Friday, March 20, 2020
Good morning Friends and fellow Hydro Warriors,
In light of the recent pandemic developments and global health crisis, I wanted to make time to sit down and write a message to all my friends in the hydrocephalus community and beyond. There is a new and increased need for information, support, and comfort as people all around the world are isolated and so many things are in a state of unprecedented uncertainty.
If you have followed my story or have read my blogs in the past, you know that I write and share because I believe that it’s is one way to give purpose to the pain and difficulties I’ve experienced in my own journey. I know there are so many patients and families around the world who are dealing with hydrocephalus without the support that I’ve been blessed with. So, I want to start by saying this… I’m here. I might be on the other side of the country, or the other side of the planet from you – but I am standing in this darkness with you as we all navigate the new normal with regards to everyday life and our healthcare systems. Even though I can’t offer medical guidance, I can offer friendship.
I can offer my own story.
And I can listen to yours.
This morning I wanted to share a couple of random thoughts.
First, I want to take time to acknowledge that this whole thing is really scary and unsettling for a lot of people. For those of us who have a condition like hydrocephalus, it’s terrifying to constantly be told that the hospital system is overwhelmed and running low on supplies, etc. The simple truth is that none of us know when we will need to have immediate care for complications with hydrocephalus – let alone the risks of coronavirus. I’ve learned over the past few years to allow myself to identify and honor these real fears for a moment, then say a prayer or do a meditation that encourages my mind to release those thoughts. Some days, this is just a one-time occurrence, and I move forward with my day. But other times, this process is a continual loop for an hour or two… or the whole day. And that’s ok. Anxiety and fear are both paralyzing emotions, but they can often be controlled by response. You can choose to address them, then actively let them go. One minute at a time.
The other thing I want to talk about is the importance of maintaining emotional control in our communication. In uncertain times, the words you use and the things you say (both verbally and internally) go a long way in shaping our experience. Science has proven that the power of spoken word has unprecedented effect on our physical and emotional health. And the crazy thing is that you don’t even have to believe the words you say… if you just keep saying them, you will eventually change your perception to match the expression. Words have a unique power to change your life and the world around you.
If you choose to say things that are hopeful, you will be more hopeful.
If you decide to make statements that are filled with love and compassion, you will feel more love and compassion.
If you express peace, you will be more at peace.
These choices will carry over to the people you interact with. The more hopeful, loving, and peaceful your words are, the more others will feel comforted.
In his best-selling book The Four Agreements, Don Miguel Ruiz identifies the first principle to live successfully as this: Be impeccable with your word. Because I feel so strongly about this first agreement, I surround myself with positive and uplifting words. The walls of my bedroom are filled with intentional word-based artwork. I regularly write encouraging statements on post-it notes and stick them to my mirror where I will see them and subconsciously internalize them. These notes include bible verses, song lyrics, and statements I want to incorporate into my daily affirmations. I read them silently, and I say them out loud. This has been a great way for me to actively influence the narrative in my mind. It might work for you, or you might find another technique that fits you better. Be creative! Find and use words that give life.
I am committed to finding the beauty in broken moments in life, and often that beauty comes in the form of human connection. Some of the most amazing friendships and relationships in my life were planted and cultivated in the ruins of shared trauma. If you are lonely or isolated, I’m here. Send me a message or email via this site or engage on Instagram (@stayinthearena).
Keep on walking.
We’ll walk together.
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 (x29), 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.