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you’re going to be different, and that’s ok

12/30/2017

4 Comments

 
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A couple of weeks ago, someone I know came to me out of the blue, with some heavy news. He had just been diagnosed with cancer, and would be going through surgery and treatment right before the holidays. As we talked for a few minutes, I could tell he was trying hard to be strong and positive about the whole situation. I listened as he told me that he has a family history of this type of cancer, they caught it early, and he knows he’s going to beat it. Even if he was frightened on the inside, he was upbeat and smiling. We talked about mindset, and the game plan. At the end of the conversation, I told him something that I have learned in my own journey - that every experience you go through changes you… it shifts your thoughts, emotions, and approach to life. 
On the other side of this challenge, he is going to be a cancer survivor. 
But he’s also going to be a person who walked through this dark valley, and come out on the other side… changed. 
And depending on how you approach that change, it can be either good or bad - it’s a choice. 


In 2013, I started reaching out and connecting with teen and young adult girls with hydrocephalus, and began communicating and supporting them, as a mentor. I had just started talking with the staff at the Hydrocephalus Association about getting involved with advocacy work, and I wanted to find a volunteering niche that made sense for me. I knew that I was born with the gift of connection, and with that, I would find my purpose in supporting other people with hydrocephalus. From the beginning, I found myself having this same conversation with the girls I was working with… as they approached brain surgeries, shunt issues, and difficult life changes. And as time has gone by, I personally have lived this message month after month, year after year. 


As we move through life, we are designed to be ever-changing, growing, adapting, and evolving. It’s truly amazing. Although it’s easier to think and meditate on the pleasant experiences that have shaped us into who we are today, there is equal value in the difficult events. The challenges teach us who we are at the core, give a new perspective, and provide a spirit of empathy that we would not otherwise have. But here’s the thing… I believe that I only gain these positive things if I choose to do so. 


Everything we experience as humans impacts who we are. We are even affected by a simple conversation. In his best selling book, The Four Agreements, Don Miguel Ruiz teaches this basic principle in the first agreement. Be impeccable with your word, because every word that comes out of your mouth has the power to change another person - to either build them up, or absolutely destroy them. I think of this every day, and try my best to apply it in my exchange with others. Every single interaction has the power to change us. 


Since May of 2012, I have had 14 brain surgeries due to hydrocephalus, and a roller coaster of shunt malfunctions, adjustments, and side effects. I deal with all of the issues from the resulting trauma… every single day. Some of that damage is visible to the outside world, but most of it isn’t. Don’t get me wrong, I definitely have my moments of frustration and devastation. It’s natural to do so. But then, I move back into a proactive mindset, as soon as possible. Having hydrocephalus is not going to wreck my story. It’s only one part of who I am as a person, and even though this condition has changed me, it’s also put me on a path of remarkable learning opportunities, and brought people into my life that I truly would never want to live without. 


I go through each phase of life with this condition with the following mindset, consciously accepting and processing the fact that I am continuously changing. 


  • Most importantly, I do everything I can to enjoy my life in between the episodes. I work, stay active, and spend time with my friends and family. I live and love between the madness. 
  • I work as hard as I can, to keep my physical and mental strength up. Rather than take the approach of babying myself, I do the opposite - and put in the effort it takes to grow and get stronger every day. This includes strength training, therapy, and mental training. I never know when the next surgery/malfunction might happen… so I get ready, and stay ready. 
  • I focus on being productive. In my career, I challenge myself to do my best work every week, because I love what I do. In my work as an advocate for patients with hydrocephalus, I take the opportunity to support others as much as I can. I pour myself into helping others be successful, and this makes me happy.  
  • When I believe that I am starting to experience a shunt malfunction, I don’t panic. Instead, I have a protocol and a set routine that I begin, and then I adjust as needed (because every episode is different). As aggravating, disappointing, and stressful as these times are, I have come to understand and accept that these things are simply part of living with hydrocephalus, and that how I choose to react is the single most important thing I can do, to affect my journey. The rest is out of my hands. 
  • Only after it is confirmed that I am going into surgery, I go into battle mode. At that point, I narrow my mental focus, decide what I will share with the public (*I actually do not share all of my surgeries and health challenges on social media and my blog), and then I make a game plan for recovery. I work as hard as I can to stay in the present moment, instead of dwelling on what has happened in the past, or what might be ahead. Each moment, good or bad, only happens once… and each one that passes is one step closer to healing. 


Over the past several years, writing has been my outlet of reflection, as I have journaled extensively. Some of this journaling has become part of my blog posts. As a result, my blogging has been a glimpse into how I feel, a window into how I process pain, and insight as to how I view the massive changes that have occurred on the other side of all these life experiences. It has allowed me to share my perspective on different things in life, many of which draw a parallel to the experiences of the people who read what I write. Today, what I want to share is that it’s ok to be different on the other side of a crazy period in life. It’s also ok to feel broken and damaged, exhausted and defeated, because these are the precise times when true strength is revealed. It’s an opportunity to prove that you are willing to stay in the arena, battled and bloodied… and that you are willing to use these intense battles as a springboard that launches you forward… into greater things, and clearer understanding. It’s in my most broken and vulnerable moments, that I have felt the most comfort— in my faith, but also in the most incredibly beautiful human beings, who have simply appeared in my life at the right time. 


Be ok with the battle. 
Accept it, and stay present as the fight swirls around you. 
You’re going to be different on the other side. And that’s ok. 
What you choose to do with that is entirely up to you. 


Stay in the arena, 
#we 
Amy


The strongest among us are the ones who choose to be so. 
- Freddy Sandoval 


This post is dedicated to Ava & Kim.... standing with you in this fight. Much love, and many prayers. xo 
4 Comments
Denise waterman
12/30/2017 09:51:48 am

Thanks for sharing so true in any kind of life we have ups and downs

Reply
Amy
12/30/2017 03:13:15 pm

Thank you Denise. ⚓️

Reply
SCOTT GROVER
12/31/2017 02:28:13 am

Accepting the battle...that registers with me. My battles are in many other arenas, but it's accepting the reality of them that gives me leverage in daily overcoming of what never ends.

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Holly
5/20/2018 09:41:32 pm

Accepting the battle is something I have such a difficult time doing. I’m 23 and have had 58 (another coming up) brain and spinal cord surgeries. I was dx with intracranial hypertension (rare disease that’s very similar to hydrocephalus. The only difference is the ventricles don’t enlarge with high pressure) when I was 6 and after many spinal taps and trying different meds, I was eventually shunted at 8. I’ve had a lot of shunt issues and I’m currently dealing with slit ventricles and severe over drainage (I’m talking icp of -20) I can’t go out for long and I always have a severe headache when upright. Accepting this battle is hard to do when you’re suffering everyday. When did you finally except it? The odd thing is while I do wish things were different and I wasn’t in pain everyday, I don’t think I would change the surgeries I’ve gone through. They have shaped me into the person I am.

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    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 (x31), 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. 

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