Recently, I came to the conclusion that living with hydrocephalus is like riding a roller coaster. We spend day after day wondering if my current shunt is working, recovering from the latest greatest surgery, riding the waves of pain that come with the ever-changing pressure inside my skull- which is affected by every single aspect of life itself. When the pressure doesn’t cause the pain, the physical trauma from multiple surgeries a year does. I never know how I’m going to feel from hour to hour, minute to minute. Sometimes I’m doing well, and we are incredibly happy, but when I’m doing poorly, we are so low.
The medical aspect of life with hydrocephalus is not the only roller coaster. Many of you can relate to the emotional and mental ups and downs that I’m referring to… where you simply hold on for dear life, and hope you’ll survive the adventure with as much of your psyche in tact as possible. The months get counted as victories, as we hold our breath in between failures, like giant swells on the twisting, turning, terrifying ride of my life. It all goes fast- really, really fast, and feels completely out of control at times. So many hydro patients and caregivers suffer from anxiety and depression as a result of the uncertainties of this path, and it’s easy to understand why. I believe that the mental and emotional roller coaster can be ultimately more damaging than the physical journey.
A few precious people are riding this roller coaster with me, and there are lots more supporters standing close by, watching us scream our way through mid-air, strapped to hospital beds and MRI machines like they are seats on the twister. Sometimes we cry in fear, and sometimes our breath is simply taken away by the sheer force of gravity. In the end, we all get through it together, but it takes it’s toll on everyone.
The irony is that I know that riding a roller coaster is a horrible idea for me. It’s hard on my brain, which is already stressed out, and even the gentle G force of a swing set leaves me dizzy and off balance. So, if roller coasters in the literal sense are not good for me physically, what about the other types of roller coasters? The mental and emotional highs and lows do the exact same thing to my nervous system as the physical affects of a carnival ride. Heart rate and blood pressure rise. ICP is affected. Tension comes in the form of headaches and other neuromuscular pain. My PTSD symptoms flare up and are increasingly difficult. All of these things wreak havoc on my central nervous system, and I have come to understand the negative affect that it has on my physical healing and recovery.
The year I had medically in 2015 was the epitome of a roller coaster ride. In addition to the issues with my shunt and the four surgeries that followed, my job was incredibly busy, and at times I was overly critical of myself when I had trouble keeping up with my work and personal life. However, I’m doing a lot of work on my mindset, and something is starting to shift in my heart. Only I have the power to experience the roller coaster differently. I know it’s always going to be there, and I might be watching it, but I’m not actually obligated to ride it mentally and emotionally. At this point, I don’t want to participate in the drama. I want to approach my life, including my battle with hydrocephalus, at a steady pace, staying under the threshold of chaos inside my mind, which will then keep my body more calm and rested.
A large part of this it that I’m starting to see and feel myself separate from my illness, and from some of the other stressors in my life. Even if these difficult situations are still present, I’m not identifying with them the same way. They are my experience, not my identity. I am not hydrocephalus; I have hydrocephalus and I am managing it the best I can. I am not a stressful project; I am Amy, and I organize a circus of stressful projects at times.
I’m also actively working on seeing my relationship with myself in a better light. Historically, I have been painfully hard on myself, and have super high standards of expectation. Don’t get me wrong - I don’t want to lose my passion, or the fire that drives me, and connects me so strongly to the people I come in contact with. But I understand that I must learn to experience life from a different perspective, because otherwise, I’m going to crash and burn.
So, this is my confession, my awakening, and my vulnerability - all in one. I’m working on taking things a day at a time, a surgery at a time, and trying to learn to stay on the sidelines from a mental standpoint. I’m trying to rest when I need to rest, unplug when I need to unplug, and editing my thoughts, worries, and expectations. I know this will calm my nervous system physically. And at the end of the day, I know I’ll have more emotional peace; which ultimately is the true relentless pursuit.
2/12/2016 08:56:39 pm
I'm in tears. I'm trying my best to bounce back after my revision surgery & I feel so incredibly alone. Thank you for writing & being so incredibly brave to share your vulnerability.
2/13/2016 12:04:39 pm
Brianna... your message was the first feedback I had on this post, which I had trouble deciding whether or not to publish... because it felt too raw. Anyways, you brought tears to MY eyes, because I know that there is a reason I have been compelled to share, and that I need to lean into the discomfort sometimes. Hang in there sweetie.. Pain is such a lonely place, and I do know how you feel. Even when we are surrounded by good people, the fight inside our mind remains a very desolate place. Please reach out if you need to talk, or need a push. You know how to find me. Stay in the arena, darling. You've got this.
William James Mason
2/13/2016 02:21:38 pm
Hi Brianna. I have had hydrocephalus all my life. Almost 34 years. I had my last surgery February 24 2015. You are never alone. William James Mason.
2/12/2016 09:00:28 pm
Loving you and your beautiful spirit.
2/13/2016 12:05:11 pm
Love you too xo
2/12/2016 09:03:45 pm
Let me just say that reading this brought tears to my eyes. I was diagnosed with Hydro when I was two months old. I am now 20 and have had a handful of surgeries. I really liked reading this because it made me feel like something to hold on to. It was something that I could grasp and feel peace knowing that I am not alone and that someone else feels the same things I do on a daily basis. I wanted to thank you for sharing about your journey. This road is emotionally, physically, and mentally exhausting but I really like your attitude about pushing on and fighting the fight even if it means from the "sidelines" as you put it. You're awesome and please keep doing what you're doing. Your raw and vulnerable words are helping me in more ways than one. <3
2/13/2016 12:19:25 pm
Oh, Sydney. Thank you so much for taking the time to send this message; it means so much to me. I know that there are reasons that we are making these steps to share my story... and even when it's so scary (because it is) there are people out there like yourself, who are finding comfort in my words and experiences. Be strong, keep moving forward - and stay in the arena.
2/12/2016 10:12:43 pm
I can relate Life is hard living with this Physically and mentally and emotionally it is hard cause their are people who have no understanding of what the pain is like daily and having being in and out of hospital for the last 34 years with it my self having many revisions and replacements and the pain and recovery after each surgery and wanting for someone out their to understand the frustrating thing about it all which most people cant possibly understand unless they are going through it them selves so I was born with it 39 years ago but they never discovered it till I was 5-6 years off age so I do understand it is a roller coaster ride and every day can change but you have to lift your head up and make the most of life as it is to short and we can go out side and get hit by a car or die in our sleep life is what you make it and you have to make it awesome and yes all of us that have it suffer one way or anther Just got to get through the hard days when the shunt pays up or our heads are really hurting and just push on but do remember we have it and we do understand the roller coaster ride it is not fun but you have to just be around those who can help you get through the hard times of it hey. Take care and remember your not on your own we understand the roller coaster ride and some time it just sux but then you got to just keep moving forward hon and focus on the positives in your life that is all you can do take care Donna.
2/13/2016 12:20:58 pm
2/13/2016 10:39:15 am
Thank you so much.
2/13/2016 12:21:45 pm
2/13/2016 10:46:28 am
very well written I am the mother of a 25 year old we too have had our share of ups and downs. I learned to take one day at a time sometimes one minute at a time depending on situation
2/13/2016 12:24:56 pm
5/28/2016 11:59:07 pm
I instantly cried when I saw this post!! It hit me hard. Easy to say to let go.. but its hard when my tears is for my son..
Susan K Bowman
7/3/2016 09:38:10 am
I am living with a VP shunt that causes me extreme abdominal pain all the time!
7/3/2016 03:31:19 pm
I'm sorry to hear this. Hang in there!
Susan K Bowman
7/3/2016 09:26:13 pm
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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.