In January of 2016, I wrote a blog post titled “When are they going to get this thing figured out??” I had just established my website the month before and I had no idea how much sharing that one piece of writing would change my life. At the time, I was recovering from back-to-back shunt surgeries, and I posted it primarily to answer the common questions about hydrocephalus that I received from my own family and friends. But it was also a bit of a personal rant… the things I needed to say, in my own plain-English, non-technical words, to help me process what I was going through. Perhaps, because of that rawness, it definitely hit a chord in the community – with literally hundreds of people contacting me and messaging me. And since that initial post, I have reposted it every time I have had another brain surgery. Over the past two years, it’s been shared all over the internet, and read more than 20,000 times total.
This week, I will be undergoing another shunt revision surgery – my 21st brain surgery. As shocking as that is for my family and friends, it’s not shocking for many people in the hydrocephalus community, who have walked a parallel path. While I am certainly hesitant and naturally apprehensive about going through this process again, I have complete confidence that my team has put incredible care into making this decision. And even though I’ve been really sick off and on all year and my pain is high, I’m physically and mentally strong right now, which I know will make a difference. I am well supported and we are focused.
That original blog post is still very applicable today and I’m still humbled that it has touched so many people around the world. But today, I decided to do an updated version with the same concept. These are the 10 most common questions I get regarding my condition and these are my own raw, unfiltered responses to these questions. More or less, I wanted to answer these questions as if we were sitting together and you were asking them. I hope that in some way, by sharing these experiences and thoughts, I can provide you with some comfort and information. Knowing that there are others out there who are going through similar experiences is one of the most incredible things that the internet has the power to provide. And when you can get some positive input in regards to a very negative experience, it can truly change your path. That being said, I have to remind you that I am not a doctor or any type of medical professional, and this is not intended to be educational at all. It is simply my own answers, about my own diagnosis and experiences.
As we move forward towards better answers for hydrocephalus, may we always remember that the credit belongs to the man who is actually in the arena, willing to stay, and battle – even when he fails again and again. May we band together in solidarity and strength, carrying those who need support, and remembering every day that the only thing that truly matters is human connection and trust.
1. What is hydrocephalus? Hydrocephalus is defined as an abnormal accumulation of cerebral spinal fluid (CSF) in the ventricles of the brain. When I explain it to people, I tell them that my brain does not drain spinal fluid properly. I developed obstructive hydrocephalus in my teens and was diagnosed at age 17. There is currently no cure for hydrocephalus and all treatment options include brain surgery. For more information, visit www.hydroassoc.org
2. Why have you had so many surgeries? The most common way to treat hydrocephalus is with a shunt, which is a valve and catheter system that diverts the fluid from the brain where it has built up and deposits it elsewhere in your body, where it can be absorbed. Hydrocephalus is shockingly common – even though many people have never heard of it. In the United States alone, there is a hydrocephalus related surgery every 15 minutes and it is the leading cause of pediatric brain surgeries.
While some patients are able to go many years without trouble with their shunt system, statistically, 50% of all shunts fail in the first two years. That being said, there are a lot of us that have a really hard time with our shunts – the only way to fix them or replace parts is brain surgery.
Click here for more information on my medical story.
3. Why don’t the surgeries work? Honestly, this is a frustrating mystery and I think every neurosurgeon in America would tell you that. Again, I am not qualified to answer this question, but there are many reasons a shunt (or ETV) will fail. They occlude (clog), the catheters get brittle and break, they come unhooked, etc. I have averaged 3-4 shunt surgeries a year for the past several years – until this last one, which lasted almost one year.
4. Who is involved in your care? I have been absolutely blessed and have put together an incredible team of physicians and therapists over the years. Of course I have a neurosurgeon, a primary care physician, and a pain management doctor. In addition to that, I have a strength coach that is very involved in my care, and a mental coach. When people ask me about how I manage my hydrocephalus, I tell them it takes a village. I have more information on the Resources page of my website, as well as the Hydro Treatments & Therapies page.
5. How do they decide to do another brain surgery? My neurosurgeon makes the decision to operate only when he feels like that is the only remaining option. He has been my surgeon for a number of years and he knows me very well. I feel like this has always been an advantage for me, because he knows what I function and look like when I’m doing well, versus when I am having serious issues. From time to time, he has consulted other neurosurgeons to look at my case and I always appreciate how thorough he has been. In my opinion, the most crucial decision you make is to establish care with a neurosurgeon who is a good fit for you. I personally travel 3 hours from where I live to see mine, because he is someone I trust and can communicate with. It has made all the difference in the world for me.
6. Is a shunt the only option for treatment? Some patients are candidates for a procedure called an Endoscopic Third Ventriculostomy (or ETV). Whether or not a neurosurgeon may decide to go with this option rather than a shunt, has to do with the patient, the neurosurgeon, and primarily the cause of the hydrocephalus that they have. It’s not an option for certain types of hydrocephalus. I had this surgery when I was 19 years old and while it is still viable today, my brain also needs a shunt to keep up.
7. How do you prepare for brain surgery (assuming it’s not an emergency surgery)? I try my best to prepare for surgery by getting things organized to the best of my ability. This includes unplugging from my job as much as possible, getting some good food options prepped, and making sure I have someone to stay with me during the process. In addition, I work on mentally preparing myself for the process, using visualization, meditation, and affirmation. It’s incredibly important for me to go into surgery feeling relaxed and confident in my team. There is always uncertainty with brain surgery and staying mentally in control of my thoughts and emotions are very important.
8. What are the concerns and risks? As with all surgical procedures, there are risks involved. The concerns can also change from surgery to surgery and from patient to patient. But in my case, there has always been a high level of concern about the risk of infection and seizures. I have had a lot of trouble with my head wounds sealing up as well, so there are concerns with wound infection.
9. What is the projected or estimated recovery time from your shunt revision surgeries? The correct answer to this question is that it’s different for every patient and for every surgery. I have had many shunt revision surgeries that have had similar recovery timelines, but then I’ve had others that have been much easier or much harder. That being said, in my own experience, I would say that my average recovery time to get back to 100% strength and energy is about 6 weeks. I am very physically active and I do my best to return to activity as soon as possible. I usually am off of work for about 4-5 days, then slowly integrate back into daily life.
10. How does this process affect the people who are close to you? I am incredibly fortunate and have an amazing network of family and friends that support me. I know that it is frustrating and painful for them to watch me go through the repeated surgeries and the chronic pain issues that come along with them, but I am thankful beyond words that they choose to walk beside me on this path. In my life, I see that as one of the blessings I have received and that I never take for granted. As a family, as a tribe, and as a team, we go through all of this together. We win and we lose together. In my blogging, I often use the hashtag #we. This is because when I speak of my journey, I use the term “we” as an authentic representation of the fact that I don’t do this alone. I walk this road with the most brilliant and loyal humans, and I am grateful.
To my Loves:
We are ready.
We fight. We love.
We stay in the arena.
Here’s to the relentless pursuit of everything important.
Thank you for holding my head and my heart.
In the past five years, an incredible battle has been fought in me internally.
Picture an epic battlefield scene in a movie.
On one side, we have my physical brain, challenged and damaged from hydrocephalus, and continuously putting me through the ringer of shunt malfunctions and brain surgery.
On the other side of the battle lines, we have my heart. The values and work ethic that I have are a combination of my personality traits, and how I was raised. My heart is fortified by the fact that I know God has a purpose for my pain, and is with me every step of the way. I’m also just naturally a fighter, “a scrapper” as my dad says. I don’t back down easily, and I don’t give up.
And so, the battle rages.
But as time goes on, and the difficult days stack up, I end up with some fatigue, emotionally and mentally. This is where my the strength of my mind comes in. This past year, I’ve sharpened my focus on mindset, and I have found that it has absolutely become a factor in my success.
My mind teams up with my heart in the battle for my wellness… and fights against the physical challenge. Even right now, as I am working through some intermittent shunt failure, I am confident that my mental strength plus my heart will beat out any physical challenge that is ahead.
When I met Freddy Sandoval, I knew of his work as a professional mental skills coach. I knew his story… a highly motivated and incredibly intelligent kid from Tijuana, Mexico, who persevered through many challenges to become a major league baseball player, and now a successful mindset coach in professional sports. Freddy and I talked at length about my health issues, my family and career dynamics, and the way I see my role in the world around me. His insight and guidance has been instrumental in strengthening that bond between my heart and my mind… which allows me to overcome the physical pain and brokenness brought on by my hydrocephalus. I’ve worked extensively at understanding myself, steering my thoughts and giving purpose to the way that I think. I am more positive, and have learned to eliminate negativity from my life. I make choices every day, to control everything I can control about my situation - and I take responsibility for those choices. Even though Freddy doesn’t train me as an athlete, we prepare my mind in a similar way. His programming is centered around controlling the subconscious mind through conditioning, thought replacement, relaxation and affirmation. I am forever grateful for the role he’s played in my story, and for his unwavering dedication to me. It’s been a game changer. In times when life’s roller coaster is screaming down the tracks, I feel peace, and I’m safe and still.
Being mentally strong does not mean that you don’t have emotions, or that you don’t feel pain. There are times when life feels like a giant gravel pile that we are trying to climb. As you take one step up, you slide back down to where you started. When these times come, and it feels like the physical army is beating the mental army, I stop and reset my resolve.
I speak of myself in the present tense. “I am… I do… I can…”
These statements replace the ambivalence of “I might… I wish. I think… and I want…” The simple act of only saying things as they are right now, in this moment, will change your thought process. So much fear and anxiety is rooted in thinking in the past or the future, so eliminating those things keeps me focused on the truth that is right now.
I strongly encourage you to concentrate on staying in the present tense. The good thing about staying present, is that time is only truly experienced in the here and now. This means that if you are going through a difficult or painful time, you only have to live those moments one time. Just keep walking. The fastest way through the shit is straight through the shit… no detours.
But in a parallel statement, you only get to live the beautiful moments in life one time… so stay present and enjoy the beauty that lies in the small things as well.
Hydrocephalus is always a factor in my life, and may always be. I have no control over the things that lie ahead, but I am confident that I am able to get through what I’m going through right now.
I am strong.
I do love my life, and trust that God is in control.
I can put in the work that I know will help, even when it’s painful or difficult.
Today. Not tomorrow, or next week.
In relentless pursuit,
for freddy - four years in four hours. #proofoflife
Have you ever heard a phrase or thought that you knew or understood for a long time, and suddenly takes on a new meaning?
Time is money.
I think almost everyone has heard this quote, and it applies to so many aspects of life and business. I believe that most would consider the meaning of this statement to relate to the idea that money can be earned if time is spent wisely. However, recently I have been thinking a lot about this quote, and I’m starting to understand the phrase a little differently.
At the beginning of the new year, it’s natural to take a look at your goals, and set some resolutions for what you’d like to accomplish in the next twelve months. I find that it’s easy for me to be disciplined and driven with certain things, while I procrastinate and fail to prioritize other tasks. Even if I claim that those things are important to me, or have added value to my life in the past, my lack of discipline says otherwise. And anyone who knows me well, knows that at the top of my pet peeve list is when people (even when it’s me) express that they are going to do something, but then they don’t do it. It ranks right up there with complaining about something if you are unwilling to take action to change. I definitely don’t want to be one of those people.
So, I’m working on this in my own life. I’m taking the time to notice the differences between the things I am committed to, and the things I regularly neglect… and asking myself what makes the difference in these choices. For example, why am I able to make it to strength training 4-5x a week, grinding out workouts, even when I’m in a lot of pain? Or get up super early so I can read my bible and have a little time to study and meditate in the morning before work? Both of these things require a great deal of discipline and sacrifice, but I consistently manage to find the time and energy. On the other hand, it has been really tough to find the diligence to write regularly— even though I totally want to…and there is no physical sacrifice involved. Surely, finding 15-20 minutes to write in a journal every day, or work on my blog, should be much easier than deadlifting with a headache, or studying at 5am, when I could be getting another hour of sleep.
But that’s not how it works.
I am finding that it isn’t about how easy or difficult something it is.
It’s not even how much those things will “pay off”.
It more or less boils down to the choices you make on how you will spend your time.
It’s a choice.
So, this is where the “Time is money.” reference comes in. I was thinking about the concept of time the other day, and how the time we are given is like being given a continuous flow of money…that can only be spent in the exact moment that it is received. As the money comes in, you decide in that moment how to spend it— and that’s how time is.
You can’t count on having it in the future.
You can’t save it from the past.
You spend it as you go— but you can choose to invest it.
Discipline is the part of life that is like investing. You can make a choice to be diligent about certain aspects of life, in order to have the opportunity make the future better. There are no guarantees in investing - there is only commitment to the work, and faith that it will make the future better.
Work + Faith = Investment
In the end… time is money.
Spend it wisely.
Invest it carefully.
And be mindful of your choices to do so… because therein lies the sometimes brutal honesty about what is truly important to us.
In relentless pursuit,
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.
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,
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
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,
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 (x20), 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.