Several years ago, a therapist suggested that I write messages to myself on post-it notes, and put them on my mirror. These photos have become a thread in the tapestry of my online life, but I have never shared what the notes mean to me. In this blog series, I will share a handful of those moments - in hopes that it will provide encouragement to someone out there.
Stay focused, Am.
I’ve taken several tests to determine personality type, and all results have been the same.
I’m an Executive personality type on the Myer-Briggs, and an 8 on the Enneagram.
If there’s one thing I know about myself, it’s that when I was created, I was wired to chase knowledge and understanding. Once I have some understanding of the task at hand (even just a little bit), I use that information to move closer to my goals. When it comes to getting through the obstacles with my health, I tend to approach it the same way I would tackle a project at work or something in my personal life. I wrote this note to myself earlier this year, I was struggling with my hydrocephalus and the roller coaster of shunt failure was at full tilt.
Stay focused, Am. The pain and nausea that come with shunt malfunction are only roadblocks on the highway to solution. At the time, a plan was in place and we were moving slowly towards resolution – but it was a long and twisted ride. However, during those 5-6 months of struggle, I met several strength related goals, and was able to keep working right up until the surgery to replace my shunt valve in late May.
The decision and effort to stay focused helped me to clearly communicate with my doctors, remain calm, and go into surgery in the strongest mental and physical strength.
Stay in the arena.
In the late summer of 2003, a vicious forest fire ripped through central Oregon. When it was finally contained after 34 days of incredible battle, the B&B Complex fire had left a devastating mark on over 90,000 acres of pristine woodland. That summer, I spent a week teaching at a music camp in Sisters, Oregon. I’ll never forget the feeling of being so close to such a massive and powerful fire. The air was thick and smoky, and it felt like you could cut it with a knife. Large forest fires often create their own weather patterns, and the atmosphere felt volatile and unpredictable, as storms would rage through for several minutes at a time. The little mountain town that is usually crawling with tourists all summer long was dead, except for the thousands of woodland firefighters who were camped nearby.
Fifteen years later, the Santiam Pass still shows the deep scars of that fire. Since my medical team is in Bend, I drive that stretch of highway often, and in all seasons. With any long drive that you make repeatedly, you start to get the rhythm of the mile markers. I know exactly where the cell phone and satellite radio signal coverage cuts in and out, where all the passing lanes are, and the precise point at which you feel like you’ve left the Willamette Valley and officially made it to the mountains. The thing that I love the most about the drive from Salem to Bend is the way the terrain changes so much along the way. From the farm fields and orchards in the valley, to the lakes and huge evergreen trees in the mountains, no matter what time of year you make the drive the scenery always breathtaking. Then when you get up onto the pass, and you see the acres and acres of land still affected by that incredible fire, it’s shocking. Thousands of burned trees stand like charred scarecrows, with their arms stretched to the sky. In the winter months, when the snow is on the ground and the skies are gray, the 10 miles or so of skeleton trees seem more eerie.
Last weekend as I drove over to my neuro appointment, I suddenly noticed how much regrowth has started to happen in the pass. It has taken a long time, but the ground cover is vibrant and healthy… bright green against the blue sky, with summer wild flowers scattered among the trees. The mountains stand solid, strong, and unchanged, and the burned trees create a charcoal picture frame for all of this natural beauty. As I drove, it dawned on me that this regrowth is a perfect metaphor for life after challenges. I often speak about the power and peace that comes with accepting the fact that you are going to be different and changed on the other side of major life events – whether that is a new diagnosis, brain surgery, or a relationship change. Sometimes those events leave us feeling like this forest land – devastated and burned out. But faith is the confidence in things unseen-- the belief that eventually the landscape will grow and flourish again, if we simply keep standing tall – reaching for the sky with everything we have left.
Pain is going to change you.
You’re going to be different on the other side, and that’s ok.
We’re ok. We are HEALING.
The storms pass, and the wildfires die.
The soul remains, and the heart will stay strong if we will it to do so.
Find beauty in the broken.
Towards the end of last summer, I was challenged by my neurosurgeon to dedicate 100 days to getting as strong as possible, physically & mentally. He hoped that during that time, I would be able to stay healthy, and I would go into the fall ready for what we already knew was an inevitable shunt surgery. So, along with a couple of my friends and my strength training team, I jumped into an incredible 100 day journey. I committed to posting once a day on my Instagram account— documenting, recognizing, and acknowledging the things I did every day to become stronger. It was really fun on some days, and really challenging on others.
Unfortunately, my brain didn't cooperate, and I had my 16th brain surgery on the 30th day. I took a few days off, then started up again— pressing myself to find the strength in the many tiny victories of recovery… and using my tears to fuel my drive for better days.
I finished my 100 days of strength on Thanksgiving Day. On that day, I reflected on the path I had followed for those three months. The nights in the gym, and the talks with my friends. The brain surgery, and the recovery that followed. The quotes that pushed me to keep going, and the daily battle to stay in the arena. I had finished the challenge, and I was stronger. In that moment of reflection, I was so thankful that I have people in my life who care enough about me to push me relentlessly, and who are never afraid to walk with me through the valley of the shadow of death. We do it together, and we come out stronger.
I’ve had an incredibly difficult year. I’m recovering again from surgery, and it’s been a difficult few weeks. But, today at lunch time, I was looking through the photos on my phone, and I stumbled upon the video montage of the 100 Instagram posts, that I had uploaded to YouTube. It made me feel a little emotional, because it was a reminder of something I have learned this year… That I may feel like I’m struggling right now, but I am in total control of myself, my thinking, and my actions. If I choose to be strong, I am strong. And I choose strength.
Today, I’m going to start a new #100daysofstrength — and this time, it’s different. Last time, Dr. Yundt challenged me, and this time, I am challenging myself. I’m not able to work out for another week or so, but every day I will honor the journey to more mental, emotional, spiritual, and then… physical strength.
Follow my #100daysofstrength on Instagram @stayinthearena
This week, I’ve been in the arena, battling my way towards recovery after my seventeenth trip to the operating room courtesy of hydrocephalus. I’m thankful, I’m happy, and I’m frankly relieved to be through the worse part of this process, yet again. The surgery was successful and smooth. All of the work that I put into preparing for it in the past few months has paid off, paving the way for what we hope is the best-case scenario in terms of recovery. I literally have flown through this surgery, and I’m looking forward to getting through the recovery as well.
I am never in this arena alone. I have my medical doctors, my rehabilitation and strength team, my mental coach, and of course my friends and family to thank… for standing by my side in all of this, and being relentless in their pursuit of better, always. Thank you. I’m a lucky girl, to have so many amazing hearts, minds, and souls in my corner. Not to mention the unbelievable and surreal support I receive via social media and the blog. This morning, my massage therapist and I realized that on the day that I had surgery last week, I received text messages from three countries, and Instagram messages from seven countries. That just blows my mind. The internet is an amazing thing, but nothing has done more to shrink our globe than social platforms like Instagram, where complete strangers can connect over common ground. Thank you.
Confession: I have a love-hate relationship with Pinterest.
I love it for the vast catalog of mindless entertainment, information and inspiration that it provides. Sometimes I hate it, when my clients bring all sorts of very impractical-and-not-real-life remodeling ideas to meetings. I try to visit the site at least a few times a week - not only to gather information and ideas, but to stay one step ahead of my clients… so I know what kinds of impractical-and-not-real-life remodeling ideas are trending in my future. It’s often during those “research expeditions” that I find that my true inspiration comes from the quotes that people share. I quickly transition from searching home design images, to searching quotes from all sources. I pin quotes from Bible verses to the Dalai Lama, and from Hemingway to Cheryl Strayed. Some are sentiments that make me think, and some make me smile. There are a few that I save to my phone, so I can send them to my friends. Others become journal entries, or inspiration for future blog posts.
Every time I have surgery, I try to come up with a theme for getting through the tough days right after the operation. It’s just something I do… sort of a mental strategy. This time, I decided that each day, I would jump on Pinterest, and pull a quote, and that would become the mantra for the day.
So, in honor of surgery/recovery #17, here are my first seven days of battle, in quotes.
Day #1 - (surgery day) I survived because the fire inside me burned brighter than the fire around me. (Unknown)
Day #2 - (home!!) Because when you stop and look around, this life is pretty amazing. (Unknown)
Day #3 - The moment that you change your perception, is the moment that you re-write the chemistry of your body. (Dr. Bruce Lipton)
Day #4 - Toss your hair in a bun, drink some coffee, put on some gansta rap, and handle it. (Unknown)
Day #5 - Chin up princess, or the crown slips. (Unknown)
Day #6 - (first partial day back to work) Let’s start by taking a smallish nap or two. (Winnie the Pooh)
Day #7 - In the end, only three things matter; how much you loved, how gently you lived, and how gracefully you let go of things not meant for you. (Buddha)
While working on a construction site recently, I entered a room with a broken window. Standing back to view the entire panel, I could still see the landscape beyond, even though there were a few spots that were obstructed. The pane of safety glass was held together by design, creating a web of cracks extending from corner to corner. The light from outside was shining through the shattered pieces, and I could see colorful fall leaves in the refracted light. It was certainly not the first time I’ve seen broken safety glass, but I just stood there for a minute and took in the strangely beautiful pattern.
Looking out that window, I had a profound realization that my brain feels like shattered glass. From the inside, I feel the sharpness of the individual shards, while the world sees the whole picture, with the light filtering through the edges, casting tiny rainbows all around. There’s an invisible force holding it together, like safety glass refusing to fall to the ground. The years of repeated surgeries, shunt malfunctions, and constant pressure fluctuations have left cracked and blurry spots in how I function, rest, heal, and see my battle. But even though my brain is very broken, it’s also fascinating. It’s a prism that is continuously changing, and my life is shaped by how I allow this challenge to reflect my resolve.
In relentless pursuit,
For Lauren - Love you…. Stay in the arena. xx
We may shine, we may shatter,
We may be picking up the pieces here on after,
We are fragile, we are human,
We are shaped by the light we let through us,
We break fast, cause we are glass.
(Glass, Thompson Square)
On the counter, there’s a plastic model of a brain, made up of 8 pieces. If he’s running behind schedule, I take it apart while I wait, and put it back together. I reflect on the simplicity and complexity of this incredible organ, and the power it has to change the world. I carefully put the model back together, and my heart aches that my own brain is so broken. Reassembling the parts brings me a certain peace, as if it symbolizes the journey we take, time and time again. If only it was that easy. I sit in the chair next to the exam table, and wait for closure, approval, and comfort.
Then he’s there, and I get the word. I hear the phrase, and I absorb the challenge. Go get stronger. I feel the concern he tries to hide, and I see the urgency that we experience every day. Over the past few years, I’ve learned to read that resolve in his expression. He’s proud of me, and so happy I’m ok— but we need to be relentless in the pursuit of recovery. Stronger. Go as far forward as possible, before we get pulled backwards again. Stronger, so we can face the unknown. Stronger, so I can walk through the valley of the shadow of death, and fear no evil. Stronger, so I can still be Amy when they wake me up. Stronger.
Right now, I am obsessed with gaining strength, because I can feel that there are tough days coming. It’s a sensation I can’t explain, and there are no words to describe the fear I’m suppressing. On the outside, my walls are up, hiding the fact that behind the brick and mortar, the foundations are cracked already, and I am bracing myself for the fall. I lift even when I hurt, and leave the pain on the gym floor. Every day I keep moving, and I keep pushing. I will be stronger - a little bit, every single day.
If nothing else, I will be strong enough to start over, if I have to.
I’ve always been strong enough, in ways the world will not see.
There’s a hole in the middle of my heart again
But I’m not afraid to start again
Start again, I’m gonna start again
There’s a hole in the middle and it never mends
It never mends
But I’ve got to start again
(Conrad Sewell - Start Again)
Follow my #100daysofstrength on my Instagram account @stayinthearena
This morning, the spring rain is falling here in Oregon, washing the landscape and cleansing my soul. It’s been an interesting couple of months. I’ve been retreating a little bit - pulling back, processing, and preparing myself mentally for the road ahead. After several months of spilling my thoughts and sharing my journey every week, I’ve needed this time to rest and remember who I am. In this period of stillness, I’ve had a chance to reflect on where I’ve been, and where I’m going.
One year ago, the focus of my treatment shifted, and my life changed forever. Under the guidance of my OT/PT, we began to address the current condition of my central nervous system (CNS), and the trauma that has resulted from over ten surgeries on my brain in just a few short years. Until that point, the sole focus of my medical team had been on my hydrocephalus, and my shunt. The shunt has always been the cause for the concern, the pain, and ultimately, all the brain surgeries. Unfortunately, we can’t do anything about the fact that my body needs a shunt, but hates it. At this point, I’m only averaging 3-6 months in between surgery episodes. So when my therapist told us that we would be treating my pain by working to soothe and heal my nervous system from the trauma of repeated surgery, it was a new way of thinking. In a nutshell, hydrocephalus can not be healed, but trauma can.
Trauma comes in many different forms- physical, psychological, and emotional. Brain surgery several times a year has put my nervous system through a firestorm of trauma - from the anesthesia, medications, and the physical wounds of surgery, to the emotional roller coaster and the mental exhaustion of simply trying to get through the episodes without complete system meltdown. The nerves and muscles in my face, my inner ear, and vestibular system have all been rocked and damaged. The physical symptoms of PTSD have also become more pronounced as each surgery passes. But most importantly, my CNS gets stuck in sympathetic response (commonly referred to as “fight or flight”). As my brain reels from trauma after trauma, my system is subconsciously guarding itself from further harm, at all times. This heightened state of awareness affects my sleep, breathing, and my ability to heal. The main focus of my therapy and rehabilitation this past year has been to assist my body in getting out of sympathetic response, and into parasympathetic response (rest and digest mode). Honestly, it’s very difficult. I had no idea that my brain was so damaged, and I was unprepared for how terrifying the process of unearthing all of the suppressed trauma would be. My brain only responds to certain people and in certain environments, and only lets go when I am safe, and completely fatigued, neurologically. I’m not sure if I will ever feel comfortable with this, but I know that I have a new respect for what I’m going through every time I have a shunt malfunction or surgery. After working on rehabilitation with this focus for just a year, I’ve realized that it is going to be one of the key factors in my success, for the rest of my life.
In 2015, I had a total of four surgeries. On paper, it was the worse year we’ve had with my brain to date, medically. However, by treating my CNS to heal the trauma after each surgery, we have been able to keep on track with the strategies that have historically allowed me to combat my hydrocephalus successfully. I’ve stayed active and strong, worked full time, and maintained the stability that I have strived so hard for in the past few years. While this has been one of the hardest years of my life, it’s also been one of the healthiest, and one of the happiest years. My mental perspective has also changed as my medical reality has evolved. I’ve always been a fighter, but now I know that I have to make an active choice to be well, and that only I can put in the work necessary to make that happen. It’s a daily challenge to to reach deep inside myself, choose to let go, and trust this painful and frightening process.
My current shunt is five months old. Sometime around the beginning of March, my pain spiked, and we began the all-too-familiar process of trying to right the ship to avoid the inevitable. We’ve tried everything.
I’ve rested, and I’ve pushed.
I’ve medicated, and I’ve detoxed.
We’ve adjusted, and we’ve waited.
I’ve got pages and pages of journaling and documentation of previous shunt failures, and treatments and tricks that have helped. In the past two months, I have poured myself into those logs - seeking anything that seems like a repeated pattern, and trying everything I know to do. And, in the end, we fought a good battle, and I’m proud of where I am. I’m strong, I’m at peace, and I’m ready. But there is nothing left to do, except to replace the shunt valves and start over.
I’m committed to finding the clearest path for my brain to travel, while it processes the trauma that I’m about to add to my system. This is about the physical aspects of recovery, but it’s also about mindset. It’s about being a fighter, but not fighting the process. It’s about trusting my team, and myself. And it’s about taking the shortest path through the shit, which is unfortunately straight through the shit. No detours.
There is no greater gift than for someone to care for you so much, that they are willing to get down in the trenches of life with you in your darkest hour and weakest moments. You look them in the eyes, let them see your pain, and are comforted by their presence in these moments of transparency. I’ve said this before, but I am unbelievably blessed by those who hold my heart. My family, my friends, and my community surround me, covering me in love, encouragement and prayers. I’m not alone, and together we stand in this battle. That's the truth.
Let’s do this again. We’ll hit the reset button, and show the world that we will be ok.
Surgery #15 - scheduled 5/25/16
In the months since launching this website, I’ve received hundreds of emails from other hydrocephalus patients, family members, and supporters. The overwhelmingly common theme of these messages has simply been “how do you cope with the frustration?” Truthfully, I really don’t have a good answer for this question. I can only let you know that if you are dealing with the aggravation, discouragement, and fatigue of life with hydro (or any other illness, for that matter), you are not alone - and I am definitely no exception; I am frustrated too. Clifton and I have put ourselves out there by sharing our story, and one of our big messages to the community has been to take an aggressive, proactive, multi-disciplinary approach to overall health - and to work as hard as you can to control the factors that you can. But sometimes, you just have to let go, stop trying to fight at every single turn, and just trust the people around you to catch you as you fall into their arms - literally and figuratively.
So, this is where I’m at. Since my last blog post a few weeks ago, we have been re-grouping and making some adjustments to my overall rehabilitation plan. I’m four months post-op now, and while I am physically the strongest I have ever been, and emotionally I am happy and at peace, my headache pain is once again off the charts - and the decision has been made to try to let my brain rest a little bit, while we have the chance. Even though I’m in pain, my medical team doesn’t have reason to believe my shunt is failing, so now is the time to take these steps back. On one hand, I’m relieved and content to wait it out for a while, just treat the pain as I can, and live my life quietly - outside the arena. I need the rest, especially since I haven’t had the best track record for time between surgeries these past few years. But on the other hand, it’s frustrating and disheartening, and it’s definitely not my nature sit out of the battle, and not push for constant improvement. Pain is a lonely island - especially when you are well enough that the outside world believes you are completely “normal”. Let’s be honest… I’m basically the queen of “fake it ’til you make it”.
However, I need this right now.
I need this time to walk alone and reset my resolve.
I need this time to pull back and start over.
And my brain needs a minute.. or a few weeks.
There is a Matthew Perryman Jones record that I’ve had on repeat the past couple weeks, called Feels Like Letting Go. It pretty much sums up how I’m feeling.
Oh my love
help me open my heart again
tear it open let the rain fall in
wash this hardness underneath my skin
Oh my love
let me hear your voice come through
I wanna know the love inside of you
make this dark heart believe in what is true
I know that in the dark there's a fear of letting go
I know that in my heart that I fear what I don't know
and this feels like I'm letting go
and this feels like I'm letting go
I'm letting go
If you follow this blog or have read the content of this website, you know that music is a crucial part of my life, and my recovery process. Although I’ve been a musician for most of my life, it wasn’t until this past year that I learned the profound physical affect that music and rhythm can have to soothe the central nervous system. Music also has a powerful way of putting words and melody to emotions you can’t otherwise explain. On my Instagram account, I regularly share music that I’m listening to, and I am starting to create and share #musicheals playlists on my Spotify account, because I believe that music is both a language and a fellowship, and it is created to be shared.
I hope that wherever you are tonight, you can be still, breathe, and listen to some music. We’re all in this together. Stay in the arena when you can, and take a break when you need to.
In relentless pursuit,
In the summer of 2012, I was healing from my shunt re-placement surgery, and was encouraged by my neurosurgeon to work on my physical fitness, and specifically to get my body fat percentage down. I was not terribly overweight, and had never been concerned about body image, so I was hesitant to work with a personal trainer. In light of the challenging physical condition I was in at the time (no strength and zero balance!), working with a trainer could have easily been a disaster, if it wasn’t the right person. Clifton met Joe Locascio, at trainer at our gym, chatted with him a bit, and felt like he was a good match for me. Trusting my husband’s judgment, I went forward - and he was right, Joe was absolutely the right fit, wasn't intimidated by my hydrocephalus, and really wanted to help us. The relationship that formed those first few difficult months resulted in an amazing friendship, and ultimately led to some pretty significant changes in our lifestyle. The strength training and balance work that I started with Joe also led to the current training I do at Courthouse Performance Training here in Salem, Oregon. Being physically strong has been a game-changer for me, and as you all know, is a major component in how we prepare my body for the battles of surgery, and rehabilitate it after the trauma. But the guidance and advice he gave us regarding my nutrition was the most important thing I took away from the training, and started me back on the road to overall health.
Joe introduced me to the concept of an anti-inflammatory diet, and I began to learn about the Paleo lifestyle. Eliminating grains, processed sugar, and processed dairy from my diet greatly reduced the stress and inflammation in my body. I found a lot of great resources and support online, and purchased a book called Practical Paleo, by Diane Sanfilippo. In this book, she outlines different protocols based on your specific health goals, and there was a section on Neurological Health. I was fortunate enough to meet and connect with Diane at a book signing in Portland, and she and her team have been so supportive and gracious to me.
Two years ago today, Diane featured my story on her nationally recognized Paleo blog, www.balancedbites.com - The feedback I received from the article was amazing, and it was the first time that I realized that I could impact other people by sharing what had helped me to manage my hydro. So, here we are, I now have a blog of my own… I really want to thank Diane for the inspiration she gave me to give back, and all of the incredible connections I have made in the Paleo community due to her featuring me on Balanced Bites.
As a result of these changes we made to my diet, and my strength training with Joe, I am a completely different person physically. I lost over 50 pounds of body fat and gained 10 pounds of lean mass (muscle) in the first year, and went from a size 14 to a size 4 in just 9 months. It was a drastic shift, and I know that being in better shape has made a big difference to reduce how hard my body and brain have had to work to get me through the repeated shunt surgeries. My neurosurgeon has been very supportive of this anti-inflammatory diet, as he believes that it assists my body in healing. I encourage everyone to look at their nutrition as a major component in the management of hydrocephalus - as what we eat and drink not only affects healing after surgery, but it also directly affects our production and absorption of CSF. Consult with your medical team to see if the Paleo diet or something similar could be a benefit for you! You can also check the Treatments & Therapies page on my website, and the Resources page - for more information and links.
It’s important to be willing to do whatever it takes to keep moving forward. For me, being strong and eating right helps me to feel like I’m staying “ready” for whatever lies around the bend. I might not be able to control what happens with my shunt, but I can work hard to keep the rest of my body healthy and happy… Which means I lift kettlebells and eat bacon on a regular basis.
Stay in the arena.
Three months ago, I launched this website/blog, with the hopes of reaching as many people as I could to spread awareness for hydrocephalus, and to provide support to patients and families who are also fighting through the ups and downs of life with this condition. I’ve been overwhelmed and humbled by the amazing number of people who have viewed the site, and reached out to me to share their own stories with hydro, their struggles, and their hopes for a good life.
When I began using Instagram as a platform a couple of years ago, I had no idea that it would lead us to the point we are at today. The internet is a strangely vast and wonderful resource, but it’s also a scary and unrealistic place. Using social media, you can create a public version of yourself that is beautifully crafted; shaping the way you want the world (both friends and strangers) to see you. Through the rose colored lenses of photo filters, inspirational quotes, and smiling photos of evenings out and sunny vacations, a one-sided view of the world comes into focus.
Please don’t get me wrong, because I am definitely not against positivity. We all know that there is way too much negativity on social media and on the internet in general, not to mention in the world around us. I have deliberately made a point to have a generally positive image on Instagram, not only because I believe that’s what Clifton & I strive for in life, but also because there is a need for positive role models in the hydrocephalus community. I try hard to focus on the quality of my life in between shunt failures, and not the horrible circumstances that come along with having brain surgery a few times a year.
The ups and downs of my last nine brain surgeries, and the recoveries that followed, are well documented on my Instagram account, and now this website. I share as much as I feel is appropriate, because my story has been a vehicle by which I can reach people also connected with hydrocephalus. My hope is that they see that I’m a real person, with real struggles, and a super stubborn spirit that has pushed me through this journey with a certain level of success. I’m thankful for social media, for the opportunity to reach this community. However, it’s important to us that the public perception of me is accurate, and that my message as an advocate for hydrocephalus is as realistic and raw as I truly am - because how “easy” I make it look can be misunderstood by people who only know me in the capacity of Instagram. Through my website and blog, I have received hundreds of messages and emails from people all over the world who are suffering through hospital stays, multiple surgeries, and terrifying physical symptoms related to their ongoing battle - or their child’s battle with hydro. In a way, I have become somewhat of “a voice”, especially for those parents, many of whom are troubled because they do not have a way of knowing what it feels like, or where to start in creating a life for their child with this condition. I take this all very seriously, and want to help, not hinder, those who see me and follow my story for encouragement, information, and support.
Yes, I have a wonderful life - a loving husband, an adorable dog, and an incredible network of friends and family. I have the most dedicated medical & rehabilitation team a girl could wish for. I’m thankful for every minute I breathe, every person I have the honor of loving, and every beautiful song I listen to. But I also have to physically, mentally, and emotionally push myself through some very dark days, just like everyone else. I suffer from a great deal of daily headache pain, and I have a lot of trouble with my nervous system being in a chronic state of sympathetic response, due to the repeated trauma of surgeries. With this comes PTSD, which causes me to not feel like myself for a period of time after procedures - and is probably the most disturbing and scary part of my journey.
Over the past year, I have been on a mission to bring a certain level of authenticity not only to my online presence, but to my face to face relationships as well. I’ve always had a hard time letting anyone know that I am in pain, and I tend to guard myself from people seeing the mental effort it takes. Vulnerability is definitely not my strongpoint. But every single time I have hesitated before posting something to this blog, I have received stunning email messages that absolutely, without a doubt, tell me that I was supposed to share.
What do I want people to know about me, about who I am, and what my experience looks like in real life? I guess I really want everyone to know that I believe strongly in putting in the work. My parents taught me from a young age that if you want anything in life, you have to be willing to grind through what it takes to get there. My husband and I have taken a multi-disciplinary approach to my health care, which takes a lot of time and effort, but is also really difficult to actually go through. We travel hours away to physicians that we believe are the best match for me. I push through several days/nights a week in therapies and in the gym for rehab, because staying strong has been a big component in my success. I also continue to work full time and maintain a social life, because I believe that the balance keeps me going.
Sometimes I feel strong, and sometimes I’m completely overwhelmed by the tenacity and responsibility it takes to stay the course, and do what I know will ultimately help me. Doubt and insecurity creep in, as the surgical procedures pile up, and the time in between gets eaten up by the chaos in my traumatized brain. Although I’ve never been afraid of hydrocephalus, the surgery, or the pain, I constantly have to push away the fear of my health slipping. A select few people see the unguarded, rawest, brokenhearted moments, and the rest of the world sees the fighter. And I need both - I need the ones who hold me tight and put the pieces back together, and I need all the other people who cheer me on as I enter the arena again and again.
So, what does it take? I’m still learning the answer to this question, but here is what I’ve found. It takes bravery. It takes understanding what you’re up against, believing that you’ll get through it, and wanting that more than you want to stay in the safe zone. It takes learning to handle yourself when life isn’t perfect and you’re in pain. It takes relentless pursuit of new solutions to all of the challenges that living with any illness brings to the table, including pain, anxiety, and depression. It takes connection. It takes knowing yourself, trusting those who are close to you, and believing in those who are taking care of you. And it takes hard work; lots of really hard work. But it’s possible - and only you have the power to create what your version of what success looks like.
That’s the real story.
Stay in the arena…. it’s where the magic happens.
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 (x23), 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.