And I hear them saying,
You'll never change things
And no matter what you do
It's still the same thing
But it's not the world that I am changing
I do this so, this world will know
That it will not change me.
I wrote these words to the Garth Brooks song The Change on a post-it note, and put it on my desk when I went back to work a few weeks ago, five days after my latest shunt revision surgery. I needed the reminder. My sixteenth surgery overall, and the sixth in just over a year and a half, happened fast and hit me like a freight train. I had been feeling pretty bad for about 6 weeks, but still functioning until the last weekend in August, when my brain decided it had enough. I suppose I should have been prepared for history to repeat itself, but that’s just not my nature, I guess. We only had three months to heal from the previous surgery, which just doesn’t feel like enough time. However, again and again, my body proves to be strong and resilient. I get through what’s needed, and start moving back towards my own brand of normal in as little time as possible. The hard work we’ve put into my rehabilitation and strength training this past year has been credited with my quick recoveries, and I am eternally grateful for my team.
Recently I’ve had some interesting feedback in regards to me sharing my experiences with hydrocephalus on a public platform, and on social media. It seems that there are some people who don’t understand how and why I push myself so hard, and why someone who looks perfectly fine in photos is going through this much brain surgery in such a short time. As a mentor to young girls with hydro, I’ve had so many discussions on this subject; balancing a condition that is painful and dangerous with the fact that it is often invisible. Mentally, it’s a very lonely and isolated place to hide the suffering, but often it is easier, and sometimes it’s necessary. So, the question rises, why share? It’s only going to make people uncomfortable, and become your identity. Why would you want that? Is it for attention? Or likes? Or comments?
With all due respect, I don’t share all of the painful moments. For one thing, I don’t think it’s necessary, and it’s not me. I’ve chosen a life of not outwardly showing the physical pain I’m in, until things are really bad. I have been blessed with an amazing life, with incredible people in it, and I would rather share those things and keep the focus on moving forward. And I don’t want or need the attention that comes from posting about the highs and lows of life with hydrocephalus. But yes, I understand that it’s hard for people to understand why.
I share my life journey for a few very specific reasons:
I am sorry if the photos, posts, and stories of my condition and surgeries are painful to read and see. Truthfully, they are painful for me to write and share. Many times, I’ve had second thoughts before making posts regarding my hydrocephalus, and have gone through some pretty dark times, wondering if I am doing the right thing in being as open as I have been. But I press on, knowing that if each blog or post reaches just one person… someone who needs to know they’re not alone, it will be worth it.
The Merriam-Webster Dictionary defines the word “advocate” as a person who argues for or supports a cause. In addition to advocating for this cause, I aim to prove to myself, my husband, family and friends, and the whole world, that I can and will get through these experiences, and remain proactive and aggressive. Even on the days when I’m beaten down and negative, I will stay in the arena, and battle back towards the light, seeking peace.
I do this so this world will know, it will not change me.
In relentless pursuit,
Here's a link to The Change, by Tony Arata, who wrote it. #musicheals
10/2/2016 12:01:40 pm
Your willingness to share your experiences is inspiring! I am so proud of you and the selfless way you give of yourself so someone else experience isn't so isolating! You're doing all the right thing!! Love you tons!! 💖💖💖
10/2/2016 02:26:53 pm
thank you Wanda... love you too xo
10/2/2016 12:05:40 pm
First of all thank you. Secondly please don't stop posting. I have just recently found you blogs but have gotten to read some of them between trips in and out of hospital and doctors appointments for my 5 month Hydro warrior that has had 7 surgeries now. Your stories provide comfort, inspiration and information that all of my research and talks with ALL the different doctors and people associated with the Hydro/spina bifida associations can not answer. Thank you very much for what you do. It takes a very strong person to do that and we thank you.
10/2/2016 02:28:48 pm
10/2/2016 05:05:53 pm
I'm 41 and I've just been diagnosed with hydrocephalus. Thank you so much for sharing your story
10/4/2016 06:09:39 pm
10/2/2016 05:25:44 pm
I am 40 and diagnosed with hydrocephalus last june, like I told you before, when I found you made me feel much better! Keep posting 💙
10/4/2016 06:10:34 pm
Melissa K Taylor
10/2/2016 05:43:57 pm
It takes courage to put it all out there and hope to be understood. Others may deny it, say it makes no sense, it can't be. But life defies understanding. You're living and putting as much as you are comfortable with out there as you try to figure out a way to live--because this is your life. Thank you for the truth.
10/4/2016 06:11:19 pm
Thank you, Melissa. I appreciate that.
10/2/2016 09:09:30 pm
10/4/2016 06:13:05 pm
10/4/2016 07:23:38 am
Thank you for sharing your story, Amy. Like yourself, I have been dealing with hydrocephalus for quite some time. I was diagnosed mid 30's, although it was originally termed as "non-communicating" hydrocephalus. I even had a brief stay in the seizure unit at UAB Birmingham, AL, however, seizures were categorically ruled out. Several years passed by. I worked. I drove. I lived. Until 2010, little by little, I started having "spells" where I would get stuck and would be unable to move for periods of time. Sometimes seconds. Sometimes multiple minutes. I would also have episodes, which to the untrained eye or anyone that did not know, looked, acted and smelled like seizures, although as I had already been assured, they were not seizures. These started while working as a Security Supervisor in a hospital. Sometime during 2010, via my neurologist, I had my first appointment with a doctor who became my neuro-surgeon. I first had a shunt placement. In the next few months, I had my shunt setting reset ultimately to its maximum setting, still having issues. Unfortunately due to over-draining, I needed a surgery to fix two hematomas in March 2011. However, only one was fixed. June 2011, surgery number 3. The second hematoma was fixed and my shunt occluded. One of my first questions to my neuro was "now my shunt is occluded, what is to stop the fluid building back up and the same situation re-occurring?". In short, nothing. December 2010, I was sent home sick from work after repeated spells in short succession. I have not been able to work since. I still have spells. I have balance issues. I have mobility issues where my movement is limited to my recliner, my bedroom and my kitchen. Sometimes they start early in the am, sometimes lunchtime, sometimes afternoon or evening. From day to day, I never know where or when they may happen or how many I will have. Very rarely do I have a day without at least one. That said, I do try to remain positive and upbeat and walk everyday, albeit with the use of a cane. The walk is not far and certainly not fast, however, I take the positives that firstly, I can still move around and secondly, I woke up this morning. Minor goals to some. Major pluses for me!
10/4/2016 06:13:54 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.