Dear Friends & Family, Supporters and fellow Hydro Warriors,
I’ve taken a step back from active blogging the past couple months, while I have been working hard on some exciting projects I have coming in 2018. Even though it’s been a quiet period for me, I’ve had it on my heart to write a year-end post. I’ve wrestled a little bit with how to address these past 12 months, and all the shifting and shaking that’s gone on - both publicly and privately. Honestly, this year has completely changed me. It’s pulled me from my comfort zones, and pushed me into vast deserts of vulnerability. I’ve had to rely greatly on my faith in God, and examine my priorities like never before. I’ve become closer to my siblings, and spent more time with my parents. I’m learning to trust a precious few souls who have been unafraid to stand in the trenches with me. In light of all these things, the way I experience life every day has changed, and I wanted to share a few closing thoughts for 2017 with you all.
By all accounts, the past year of my life has been a roller coaster of change and challenge. It’s been kind of like living directly on an active earthquake fault line… the once seemingly solid ground of my personal life, health, and relationships trembling and moving, buckling with uncertainty, again and again.
And with each aftershock, the landscape is left a little different.
Not necessarily worse… just different.
Here’s the thing. In a society where tragedy is glorified by the media, and insecurity is magnified by social media, it’s easy to get caught up in a pattern of self pity and hyper focus on the negative.
"Why do bad things happen to good people?"
“Everyone you see is fighting a battle you know nothing about.”
In my case, these were very real losses— painful hits, that just kept coming. Divorce, multiple brain surgeries and significant health challenges, the loss of my dog, changes in my medical team, etc. etc. So, it would be perfectly acceptable to take some time to wallow in my self pity, and reset.
But, what if it’s not all about me?
What if the events of every day are part of a greater plan… something I can’t grasp unless I focus more on others, and not on myself? What if the losses are actually opportunities, and what if the people who are in my life now are the ones I’m supposed to focus on right now? I know it’s hard to understand, but I am determined to make my best effort to live each day in a space that allows me to make unique and true connections with other people. And more importantly, I have accepted that I don’t need to understand it fully.
In my advocacy work for hydrocephalus, I’ve often explained to people that I wholeheartedly believe that I don’t have to question God, or be angry for the things that I’ve gone through. I simply don’t believe that God owes me an answer. I do, however, believe that if I am willing to take that pain and use it to help other people, it turns into purpose. This is why I have chosen to share my hydrocephalus story with the world, and especially why I continue to focus on connecting and supporting families of young hydro warriors. But, what if this same pain/purpose idea applies to all areas of life? Regardless of your belief system, when you consider the life events that have brought you to this point, what purpose have you found for your pain? Can you use those experiences to better the lives of others?
In closing, I want to acknowledge one more thing. When I found the ability to let go of me, my fears, and the focus on my own problems, I started to see this incredible beauty in the people around me. I can honestly say I have never felt more blessed and safe, even as the battle between my brain and body rages, and my life has been turned upside down by all societal standards.
It’s not all about me.
It’s not even all about you.
It’s about “we”…. sharing the weight of love, life, and struggle— together. Unified and fortified by the strength we offer each other.
Each day is a unique opportunity to move forward, be grateful for one another, and live with loyalty and compassion.
Our choice is in whether we stay… particularly when the road of life becomes difficult.
Definition of the word “stay”:
Happy New Year, friends. Be safe, and be well.
Here’s to the relentless pursuit of everything that’s important.
There are so many ways to process difficulty, and I definitely have to say that my default is to simply learn as much as possible about whatever I’m facing. On my road with hydrocephalus, I’ve found my way through so many dark valleys by throwing myself into the quest for better understanding, alternative answers, and ultimately, for solutions. Sometimes, this relentless pursuit leads to frustration and sadness, but more often, it leads me to a place of peace - where I can feel like at the very least, I have done my homework, and tried my very best.
A recent opportunity for learning has led me to research the FDA (Federal Drug Administration) process for approval of medical devices (such as shunts). In my learning about the steps that it takes for a new and improved implanted device to reach the market, I heard a term that struck me in a way I didn’t expect. In order to be granted the opportunity to enter the early stages of approval, such as clinical trials, a company must prove to the FDA that their new (or improved) device meets an “unmet need” for a specific patient population. This makes good sense, from a practical standpoint - but it really got me thinking about how that concept applies to the way I look at so many things. Obviously, it made me think about the future solutions for hydrocephalus, and about the doctors and researchers who are truly passionate about finding a better path for all of us who suffer through this often crazy journey. But I also feel like this concept has so many parallels, in other areas of life.
As a businesswoman, it made me think about my role in the construction community, and in my family’s business. What is the impact that I can have in the lives of my clients, and I am able to provide them with something they can’t find elsewhere?
It also struck me that I have encountered the concept of “unmet need” over and over again in advocacy, as I have publicly shared my journey with hydrocephalus with the world these past few years. What is it about me… about my story, that has allowed and cultivated such a incredible community to grow around me? What draws people to my online journal of hope, trial, victory, and struggle? Is it because I am real about the painful parts of all of this, but I refuse to see life as anything but beautiful? Is it because my path hasn’t been easy, but by all accounts, I have been successful at navigating the medical circus that hydrocephalus often brings? Or is it because I have a brilliant medical and rehabilitation team, who have personally invested themselves in my success?
In the end… I came to this conclusion about advocacy. When I believed that I could make a difference, I took a leap of faith - and opened up my life. I believed that I was given a purpose, and I followed that path, and even though it has been painful and vulnerable - I stayed. I didn’t fully understand it when I started, but I hoped that I could fulfill an unmet need. I aspired to make a difference and encourage others.
Last month, I re-posted a blog entry I wrote on Mother’s Day of this year. It is entitled “Ubuntu” which is an African word that means “I am because of you.” This particular post is special to me, because I wrote it as a tribute to my own mother, who is an amazing human. But as I read the messages and comments that came trickling in as the re-post hit social media, I was reminded what this whole advocacy thing is about. This is about being open, being there, being willing to stay and fight when the battle rages… and it’s about filling an unmet need in the life of another person, as you walk a parallel path - and as you choose to do life together.
I am, because of you.
Stay in the arena.
This past weekend I was in San Diego, California with my family, celebrating my paternal grandfather’s 90th birthday. If you could choose someone to aspire to be like at the age of ninety, my Grandpa Russ would be the person to be. He is active, joyful, and still traveling the world. He has now visited every continent, and just this year, he has taken trips to Greenland, Iceland, Great Britain, and the Caribbean.
Russell Hage Thomas was born October 19, 1927, in San Diego. He spent his career as an aerospace engineer, working on all kinds of exciting and monumental projects over the years, mostly in the space program. His accomplishments professionally are equaled by his long list of service and non-profit projects. But more importantly, he has excelled at the roles of son, brother, husband (to my late grandmother, Dorothy), father, uncle, grandfather, and now… great grandfather. To this day, he loves to learn, and keeps his mind active with crossword puzzles, museum visits, and reading.
As I reflected on the time I have spent with my grandfather, and the influence he has had on my life, I was blessed and humbled that I get to be a part of such an amazing family. I know that I have inherited some very specific traits from my grandpa, and I hope that I can live up to his incredible example.
Work hard and be steady. Be consistent, and you will be rewarded.
Stay thirsty for knowledge. Never let the expectations of society squash the curiosity of learning and growing.
Don’t focus on what you can’t do; instead, focus on the incredible opportunities ahead. There’s a new adventure around each bend in the road of life.
Cherish the times with your family and friends. In the past year, this is the second time that my entire immediate family has been together, and the beauty of those precious moments will never be lost, as long as you acknowledge the blessing.
The other day, I had a conversation with a dear friend, who also suffers from hydrocephalus. As she shared with me some scary scenarios that she is dealing with in terms of her health, I was amazed by her fortitude, her upbeat attitude, and her resolve. Her doctors may not have all the answers, but she continues to do everything she can do to live and love between the madness. That energy is beautiful. It’s rare. And it inspired me to write about what the phrase “stay in the arena” means to me. This is what I see in her, and what I aspire to be— within myself.
Theodore Roosevelt became the youngest president of the United States in 1901, after overcoming childhood illness and personal loss. Throughout his life, he was faced with incredible challenges, politically and otherwise. In his “The Man In the Arena” speech in 1910, he laid out the secret to winning, with absolute certainty.
"It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat."
In these iconic words, I have found that the true call to action is to be willing to stay in the arena, to be willing to fight, even when it’s difficult. In my own life, especially in the past year, I have had to remind myself of this again and again. It’s human nature to focus on the negative, walking through this life complaining and blaming. But there is incredible freedom in letting go of all of that, and simply be willing to accept the trial at hand with grace and grit. One day at a time, and sometimes one minute at a time, you move purposefully through the pain, and come out stronger on the other side.
When I was diagnosed with hydrocephalus, I was seventeen years old.
I was healthy.
Full of dreams and promise.
I had aspirations of being a professional musician, and planned to move to Austin, Texas after high school. My illness brought those plans to a screeching halt, in January of 1998. In the 18 months that followed, I had four brain surgeries, and my life path shifted significantly. Even though my hydrocephalus stabilized with the ETV surgery that I had at age 18, the dream of life as a professional fiddle player (on the road and in a different place each night) had drifted away on the river of spinal fluid that now dictated my decision making.
But even so, I was reminded that
I was still healthy.
Full of dreams and promise.
I was still the same person…
I was just wiser, more experienced
In 2012, after about 11 years without surgery, I found myself back on the operating table, with a shunt system back in my brain. In the five years since then, my hydrocephalus has been anything but stable. I’ve had 13 brain surgeries in the last five years. Some days are incredible and filled with victory, and other days are difficult and exhausting. But each minute of each day, I get the opportunity to make a choice… to stay, to fight, and to do everything in my power to live the best life that I can.
OneRepublic’s song I Lived sends this message loud and clear - I hope if everybody runs, you choose to stay.
Hope when you take that jump
You don't feel the fall
Hope when the water rises
You built a wall
Hope when the crowd screams out
It's screaming your name
Hope if everybody runs
You choose to stay
Stay in the arena, friends.
Life and love are well worth the battle.
for Brianne - xo
I’m going to describe a situation that almost every patient with hydrocephalus has experienced.
So many of us have been in this position, and heard these words.
Here’s the scenario: Things aren’t going well, your pain is elevated, sleep is interrupted, and life is on hold. After struggling for a while, you make an appointment with your neurosurgeon, hoping there is nothing wrong, but at the same time, you hope that there is an explanation —or better yet, a solution, for why you are so “off”.
You go to the appointment.
Maybe they do some imaging, maybe they don’t.
Maybe they talk about your medical history, and try to find a similar pattern, or maybe they just say things look different than before.
Maybe they acknowledge that you are struggling, but maybe they tell you that they think you’re actually doing ok.
And in this moment, in this scenario…. they decide not to do anything.
In this moment… It’s so hard to see things from the viewpoint of the provider, when you are the patient. As the patient, all you feel is the pain, the fatigue, and the anxiety. But from a clinical perspective, your neurosurgeon sees things differently. They see the whole picture, and they are weighing all the risks and rewards. And it can be frustrating, disheartening, and confusing.
It might make you second guess your decision to go to the doctor, or tell anyone that you are hurting. It might even make you question whether you have the right neurosurgeon. We’ve all been there.
So, this scenario happened to me this weekend. I’m about two months post-op from my last surgery, and only the people in my closest circle know truly how tough this summer was on me. Right now I am working hard to get my systems reset, and brain rested, and my nervous system settled down. We’ve adjusted my shunt setting several times since it was placed in June, but I just haven’t been able to hit that “happy spot” where my pain has evened out. It’s been exhausting, and disheartening at times. But on the other hand, I’m doing well. There are always things to be thankful for, and I always try to acknowledge the victories along with the frustrations. I returned to work only about 4-5 days after the last surgery, and have been able to consistently work ever since. I have pushed really hard to regain my physical strength. Even though my pain levels have been all over the board, I have also been able to maintain a certain level of normalcy - professionally and socially. And when I saw my neurosurgeon on Friday, he decided that we are just going to ride the waves for a little while - and see where we are at in a month.
I came home from the appointment, and was truly discouraged. It felt like all the work that I’ve put into healing just wasn’t enough to make me feel as good as I want to feel. It feels like he’s telling me “this is as good as it gets.” And at the same time, there was a sense of relief - that we are to the point that I am stable enough to not have to do anything drastic. So many mixed emotions bubbled to the surface, and I sat on the floor and cried for a long time. Months and months of fighting every day builds up, until all at once the dam breaks and I have to emotionally reset.
Why am I sharing this with you? Perhaps it’s because I want to be authentic about where I am right now. Maybe it’s because I have learned that it helps me to write about the things I go through, so later I can look back on this phase of healing, and see how far we’ve come. But most importantly, it’s because I know that if I have experienced these difficult days, and this painfully challenging appointment with my neurosurgeon, then chances are that there is someone else out there who is going through a very similar experience. And by sharing these difficult days, I am reaching out to those individuals - Please know you are not alone. We are not alone.
Stay in the arena.
No more brain surgery.
No more BS.
No more bullshit.
That's a dream, and a goal, for so many patients and families who are living with hydrocephalus every day. We wake up each day, wondering if that morning headache is just a result of spending the night in a horizontal position, or if it’s the beginning of the end…. again. There’s a meme that floats around the hydrocephalus community on social media, that says “What if the only way to get rid of your headache was brain surgery?” And I think that’s how we all feel, in a way. For so many, hydrocephalus feels like a lifetime membership to the Brain Surgery For Life Club - and rightfully so.
Every 15 minutes, someone in the United States has brain surgery related to hydrocephalus.
There are 1 million known cases of hydrocephalus in the United States. A large part of that patient population is either pediatrics or elderly.
There is no cure.
The only treatment paths are brain surgery related.
When I was contacted a couple of months ago by the Hydrocephalus Association about using my image in their current #NoMoreBS campaign, they asked me what important life events hydrocephalus had interrupted, or taken away from me. What moments in my life were stolen by brain surgery, and couldn’t be returned? I thought a long time about what my personal contribution to this campaign would be, and what I’ve missed out on because I was in the hospital, or home with a killer headache. I talked with my parents & siblings, healthcare providers & therapists, and close friends about this. Truthfully, it was a really difficult question for me to answer. It was hard not because there weren’t any events that I’ve missed out on… but because this question challenged the hard-wired resolve that I have to keep that pain locked up and behind me at all times. I don’t ever want to dwell on the negative things that have happened in my life - I truly try to practice what I preach… to stay in the moment, chin up, eyes forward, in relentless pursuit of what’s important. This inquiry made me go back and think about all those hard times, and relive the disappointments and frustrations. Here is what I concluded.
For me, it hasn’t been about the individual events that I’ve missed.
Sure, I’ve missed vacations, birthday parties, much of my senior year of high school, etc. My college years were delayed while we established a grip on my health. My adult life has been a crazy ride of difficult surgeries, lost relationships, and personal struggles to stay on track and moving forward. But when I look at my life today, and think about how it’s been affected by living with this condition, I’ve realized that what I have actually given up is the idea of security.
Security is an interesting concept, and maybe somewhat of a mystical destination. I really don’t believe there is any true security in life - there is only a perceived concept of control. We make plans and goals for relationships, career, and activities - but often we just count on those things happening. When it comes to my hydrocephalus, I’ve realized that I can plan all I want, but I just have to maintain my flexibility. And ultimately that’s ok - I believe that I can make an absolutely beautiful life despite all that insecurity… if I choose to do so. It comes down to a very simple but powerful concept, by which I live my life every day. I have no control over what happens to me, but I have 100% control of how I respond. Likewise, I have no control over the thoughts that come into my head, but I have 100% control of my active thinking. A perfect example of this is that you would not be reading this blog post, if I had not struggled with the diagnosis and life path of hydrocephalus. I pleaded with God to show me the purpose for this pain, and then followed the path that I believe was laid out for me - which was to share my story, and support other people in their own journey. I have made an active choice to respond to the call to live and love between the madness. This doesn’t mean that I am ignoring what has been taken from me… but I am choosing to use that pain to learn and grow every day.
Those of you who follow my story on social media know that in the past several weeks, I have had a really hard time physically. It was the ultimate topper to a really crazy and difficult summer, medically. I’ve had several surgeries, and a major infection scare in the past few months. Some of what I’ve gone through hasn’t even been shared publicly, because I needed to keep some of it private in order to maintain my mental clarity. But this weekend, as I look at where I am right now, I feel so much peace. I see my brain’s ability to bounce back, the opportunities I have been presented with, and the incredible people who form my inner circle and my international support network… and I am so happy. I am so blessed. I, Amy Thomas, am going to live in that space. I’m going to be thankful, and I’m going to respond to the physical, emotional, and mental challenges that hydrocephalus brings me every day with as much grace and gratitude that I can possibly muster. I am going to love harder than any pain that has ever rocked my soul. That’s a promise.
And stay in the arena.
All my best,
The tension is here
Between who you are, and who you could be
Between how it is, and how it should be
These lyrics, to the Switchfoot song Dare You to Move, have always struck my soul, piercing through me like only good music does. It seems like this song always makes it’s way back to me, in moments when I really need the challenge. I’ve often wondered what Jon Foreman of Switchfoot was thinking when he originally wrote it, and if he felt anything like I feel when I hear the lyrics. This song is truly the ultimate battle cry to stay in the arena, even when the storm rages.
The tension is here. I know that tension, I feel it every day. And I’ve heard this song hundreds of times… maybe more. It was the last song on my workout playlist for about 2 years, and has been the last song that I listen to on my headphones before going into brain surgery, for at least the last 10 surgeries. But this morning, as I was listening to the bridge, these familiar words suddenly meant something different to me. I realized that the tension is the hard work. The tension is the day in, day out, difficult moments we have to push through - to get to where we’re going. The work is the difference between who you are, and who you could be, and the catalyst between how it is, and how it should be. It’s the work you put in on days when you don’t feel like going forward, when you feel like what you’re working for is never going to happen. The tension is in those moments, and it separates the ones who succeed from the ones who don’t.
The tension is the struggle.
The tension is the battle.
The tension is the work.
As many of you already know, I’ve had a rough past six weeks, medically. At the beginning of June, I hit the wall with a shunt that we knew was malfunctioning since early February. The shift from fighting the inevitable, to preparing for battle, was difficult this time, as I tried to keep a death grip on anything I could control - until I couldn’t control it anymore. On June 6th, I went through surgery to replace my shunt valve, and started back on the road to recovery. I had barely started to get my energy back, three weeks later, and I started to have significant wound healing issues. The incision that had originally looked perfect, started coming apart. Every one of my surgeries has come with a unique set of challenges, but the concern of infection has never been one that gets brushed off. My neurosurgeon will take zero chances with infection. After a week or so of trying to get things back on track, I underwent another surgery this past Wednesday, to cut out the damaged tissue, reposition the shunt valve, and re-fasten most of the incision from a month ago. So, here we are again… at the beginning of recovery, back where the work gets really real. And the tension is here.
I feel like I’m never going to be comfortable with sharing all the details of my struggle with the world. I cringe when I realize that I need to go onto my website and update the “My Story” page with yet another surgery. I feel like my personal friends must get tired of the hydrocephalus related content on my social media. But every time I get close to throwing in the towel, I am reminded that this is not just my story anymore…. this is everybody’s story. Sharing and being public might not be the most natural thing for me, but supporting other families and patients with hydrocephalus is the purpose that I believe God has given me, for my pain. And in order to do that, I have to be willing to sit in those moments of discomfort, and just be. It means that I need to continue to share my story, and connect with other people, even when I don’t feel like it. But most of all, it means that I have to keep working at all of this - not just the physical aspect, but also the mental, emotional, and spiritual aspects of it. It’s all hard work, but in the end… Those are the minutes, hours, and days of work, that will be the difference between how it is, and how it should be.
Stay in the arena,
For Ben..... slay the day (in the arena, of course.)
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)
Live and love between the madness. Focus on the days in between.
Make the best life you can, then just go get it done.
Stay in the arena. Keep fighting, you’ve got this.
These are the words that are peppered throughout my writing on this blog, my Instagram account, and the conversations I have with people every day, as I go about my daily life. In general, I have always been pretty positive, and I’ve definitely always been driven. My parents will tell you stories about a kid with no lack of focus on goals, and a standard for myself that was always a little higher than reasonable. Over the past several months, I have truly focused on the mind/body connection, and specifically, discipline.
This morning, I looked up the word “discipline” in the dictionary, and I found that many of the definitions refer to adhering to structure, instruction, and specifically the term “training”. I smiled… because today, I am headed for shunt revision surgery again. As soon as I find out that I’m going to have another operation on my brain, I reflect on the months that have lead up to this moment… the structure, the rehabilitation and training, the strength building, the mental work. The many nights in the gym and rehabilitation, where I’ve pushed my body to complete shut down. The trauma therapy, where my body tremors so violently, trying desperately to let go, and settle. In the past 18 months, it hasn’t been as easy to hide the physical and neurological damage that the past 4-5 years have caused, and I have been in so many situations of forced vulnerability. It has taken this focus on discipline, to keep me going forward every day. Being that raw, and letting the whole world see the hurt, has changed me as a person.
And I am so, so thankful. Thankful for this journey, thankful for the challenge, and the opportunity to learn to be disciplined and stay in the arena. These are the times that God has shown me that I’m stronger than my ego, more dedicated than my flesh, and more loved than I could EVER fathom. These are the times in which I pay it forward… when I persevere through the pain and brokenness, and I am comforted by knowing that I have lived through the struggle, and fallen into the arms of the Lord, in complete surrender. I am thankful.
Living with hydrocephalus, or any condition (or circumstance) that requires continued care and management, is often disheartening and exhausting. Even though I might have been genetically wired to "stay the course", I’m still human, and it still hurts… physically, emotionally, and mentally. But I’ve learned to allow myself a moment of grief, every time I get to this point. I cry, I mourn, I get angry. Then… I let go and move on. It can’t happen fast enough, and I go back into battle mode. Today, going into surgery, it’s all about staying focused, relaxed, and ready for the next chapter.
Here we go. Number seventeen. Let’s do this.
Thank you to my family, my friends, and my incredible team.
Your love, dedication, and steadfastness have given me more peace than words can describe. Thank you for staying by my side, on this crazy path.
In relentless pursuit,
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.