I’ll never forget it. My heart rose into my throat, as I read the words. The woman sending me the message had found me via Instagram, and I couldn’t fight the tears as I read what she wrote to me. She and her husband had just delivered their newborn son, a few weeks early. The doctors whisked him away to the NICU, and then informed them that their beautiful new baby had a brain condition called hydrocephalus… and that he would need to have brain surgery immediately, to place a shunt. In shock and absolutely devastated, they did what almost any one of us would do… they turned to the internet and Googled the word “hydrocephalus”. The things they found were terrifying - as they learned that their son could have many challenges ahead, and that they were embarking the crazy roller coaster of shunt life. But then, they stumbled upon my Instagram page— and found hope. They found that even though I have many difficulties with my shunt, and by no means do I have an easy path, I have a beautiful life, and I have hope. And in this incredibly vulnerable and awful moment, this mom found me. And it changed my path forever. Another Instagram message from early in my blogging journey, was from the mom of a little girl about 5 years old. She was in the hospital for a shunt placement surgery, and had to have her long blonde hair partially shaved for the operation. Her mom was able to pull up my Instagram account on her phone, and show her daughter all the silly photos that I’ve posted of the various phases of my brain surgery hair — shaved, staples in the side of my head, hair sticking straight out as it grows back, and everything in between. In the message, this mom told me that she was comforted by the fact that she could show her daughter what was going to happen, and that her little girl had the reassurance that it would be ok. Reading this message, I knew I was doing the right thing. These two stories are examples of so many amazing conversations that I have had with moms from all over the world- not just moms of little hydro super heroes, but also moms who themselves are battling hydrocephalus… working to balance the difficulties of daily life with a neurological condition with the hard work it takes to be a mother. I’m humbled and honored to be trusted with the stories of these beautiful women, as they navigate through the waters of life. My own mother is a truly incredible example of the relentless pursuit of life and love. I’m the second oldest of seven children in our family. Four of five daughters have significant physical or mental conditions. My mom has spent more time in hospital waiting rooms, doctor’s offices, and therapy clinics than a parent should ever have to. As her children suffer, she suffers alongside us. In some ways, I know that the emotional pain she feels when we are struggling is greater than the pain we are experiencing physically. But she has never complained, and never gives up. Her love never waivers. And her ability to stay steady and moving forward, as the storms of life rage around her, is a trait that I aspire to carry on. This past week, I had the honor of traveling to Tempe, AZ with my youngest sister, Carmel, to attend her graduation from Arizona State University. Howard Schultz, CEO and Chairman of Starbucks, spoke at the commencement. As he was speaking about humanity, and the social responsibility of each of us has to connect with others, he introduced the crowd to the South African word ubuntu. This word means “I am because of you,” a beautiful sentiment that supports and honors so many aspects of human connection, but especially motherhood. I am because of you. The love of a mother is the first true relationship we all experience. It shapes the way we interact with the world, and in the case of us hydrocephalus patients, equips us with the pure strength and endurance it takes to run this race. Even though I am not a mother, my mom’s example of faithfulness and love has made me who I am. I realize every day that I have an opportunity to positively influence and support others, and I do my best to be a good daughter, sister, and mentor. I press forward and stay steady in my fight, knowing that I have been given this path to walk— because I have a purpose. I love you, Mom. Ubuntu. I am because of you.
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Dear Friends & Family, Supporters and fellow Hydro Warriors, Growing up, I was raised by two loving, supportive, and incredibly resilient human beings, who taught me from a young age that success in life is not defined by what happens to you, but how you choose to respond to what happens. My parents gave me the skills I needed to fight my own battles, stand up for myself, and never give up. They are living proof that God gives you only what you can handle, and that love always wins. For this, I am eternally grateful. In the past 8 months, several life-altering changes have tested my resolve, crushed my heart, and forced me to take a good hard look at who I am. Nearly every aspect of my personal life has shifted, and a new chapter has begun. Each difficult experience or loss ripped a layer off the surface of my personality, exposing strengths and gifts, struggles and weaknesses. Wall after wall that I had built to guard my heart have tumbled down, leaving nothing but my true self, exposed to the world, but protected by the grace of God. And through all of this pain and vulnerability, I have found the most incredible peace. Staying present and in control my thinking, I am healing, and finding that I am never alone. Nothing about this process has been easy, but I am committed to accepting this as an opportunity to grow as a person. I first read this poem by Rudyard Kipling in English literature class in high school, but I had forgotten about it until a close friend sent it to me recently. It truly defines the relentless pursuit of life and love. As I read it for the first time in years, tears were streaming down my face. It was one of many moments in the past several months, where I felt a very real and tangible challenge to find the bravery to continue, reminding me and reaffirming the notion that love always wins. IF If you can keep your head when all about you Are losing theirs and blaming it on you, If you can trust yourself when all men doubt you, But make allowance for their doubting too; If you can wait and not be tired by waiting, Or being lied about, don't deal in lies, Or being hated, don't give way to hating, And yet don't look too good, nor talk too wise: If you can dream - and not make dreams your master; If you can think - and not make thoughts your aim; If you can meet with Triumph and Disaster And treat those two impostors just the same; If you can bear to hear the truth you've spoken Twisted by knaves to make a trap for fools, Or watch the things you gave your life to, broken, And stoop and build 'em up with worn-out tools: If you can make one heap of all your winnings And risk it on one turn of pitch-and-toss, And lose, and start again at your beginnings And never breathe a word about your loss; If you can force your heart and nerve and sinew To serve your turn long after they are gone, And so hold on when there is nothing in you Except the Will which says to them: 'Hold on!' If you can talk with crowds and keep your virtue, ' Or walk with Kings - nor lose the common touch, if neither foes nor loving friends can hurt you, If all men count with you, but none too much; If you can fill the unforgiving minute With sixty seconds' worth of distance run, Yours is the Earth and everything that's in it, And - which is more - you'll be a Man, my son!
Moving forward, I am recommitting myself to the goals that I initially had for this website - to support the hydrocephalus community by providing details of my journey, as well as my real life experiences. I remain dedicated to this advocacy work, because I believe that God gave me a strong voice and the ability to connect with people as a purpose for my pain. My name has changed to Amy Thomas, and the name of this website has changed to www.stayinthearena.com - paying homage to the Theodore Roosevelt “Man in the Arena” speech that I often reference in my blogging. Thank you to each and every one of you who have supported me, inspired me, and keep me pushing forward in growth. Thank you for understanding and respecting my need to spend the past several months outside of the spotlight, fighting these battles quietly. I’ve been intensely focused on my physical, emotional, and mental health, and I am doing well. Life is amazing - so painful and beautiful all at the same time. In the end, we get to choose how we respond to the challenge - and love is well worth the battle. Never ever give up the relentless pursuit of everything that’s important. Stay in the arena. It’s where the magic happens. Much love, Am As I look back on 2016, it’s impossible not to reflect on the testing of my spirit, and the painful days. But, at the same time, I can't help but remember the beautiful times. Not a month went by that I wasn’t blessed with the love of friends and family, adventure, and laughter. This year I opened up my life and my thoughts to all of you, in ways I never thought possible. In return, you all reminded me that there is so much incredible need in this world, not just for hopeful cases of hydrocephalus… but also for human connection and support. Obviously, hydrocephalus is not the only condition in which people feel terrible isolation and frustration. I know that by opening up about my struggle, I've been able to give complete strangers an opportunity to feel understood and supported, even if we may never meet in person. In the past twelve months, I’ve gained new friends all over the world, who find a value in following my story. That is so overwhelming, humbling, and amazing, all at once. You’ve completely blown my mind with your response to this website/blog, as we’ve exceeded 70,000 page views in the first year. I’ve received several thousand messages, emails, and comments… and you have entrusted me with knowing your stories as well. I am truly honored. To recap the past year, I wanted to share some photos and music with you… Enjoy. We entered 2016 on a bumpy path, after a difficult end of 2015. I had two shunt revision surgeries in December of 2015, only 5 days apart. In the recovery room following the second surgery, I suffered my first seizure episode. So, the first couple of months of the year were spent in pretty intense rehabilitation, and slowly getting my strength back. The spring brought my birthday, time with family, and a trip to Austin, TX for a friend’s wedding. Of course no trip to Austin is complete without lots of snuggle time with my twin nieces, Kylie and Kolbie. Throughout the first few months of the year, I dedicated myself to establishing this website - blogging and writing almost weekly, and committing myself to a more consistent advocacy role. Blogging is something that I never envisioned myself doing, and it's been more challenging than I thought it would be. I’ve journaled extensively over the past few years, and much of the writing on the blog is taken from that journaling, which I initially never planned to share. A few of the blog posts have gained a lot of attention, comments, and shares on social media. Link to 1/8/16 post: "When are they going to get this thing figured out??" Link to 5/17/16 post: Trauma Healing & the Truth Link to 10/2/16 post: The Change (my fight against an invisible condition) At the end of May, I had a bit of a setback medically, leading to another shunt revision surgery. I healed very quickly this time, and was thankful for the hard work that my rehab team had put in after the December surgeries. It certainly pays off when I am physically and neurologically strong, going into surgery. I was honored to be asked by the Hydrocephalus Association to present at the National Conference on Hydrocephalus, in Minneapolis, in June. I participated in two panel discussions at the Conference. It was incredible to meet so many people who knew my story or knew me through social media. In addition to connecting with other patients, I got to spend time with some dedicated and inspiring physicians and researchers, who are working to find better solutions for hydrocephalus. It was a life changing experience I’ll never forget. Bella, our black lab, continues to be a constant source of entertainment (and photos). She loves to hang out with me, and forgets that she’s 14 years old the second she sees ice cream, blueberries, or the beach! I’m thankful to have my job as a construction designer/project manager, which gives me an opportunity to be creative and work with such talented people every day. Our company completed some exciting projects in 2016, and I love being a part of this team. This summer, we celebrated Clifton’s 40th birthday, and our sweet little niece Jade’s first birthday… both big milestones. More fun with friends and family…. In July, my shunt pain had started to spike again, and I was challenged by my neurosurgeon to get as strong as possible, pending a return to the operating table sometime in the fall. The following week, I made a pact with my trainer and a few girlfriends at my gym, that I would post to Instagram every single day for the 3 month period the doctor was proposing… and the 100 Days of Strength began. It was harder than I thought… especially since I ended up having surgery on day #30. The remaining 70 days followed my recovery, and my inner battle for peace. The 100th day landed on Thanksgiving Day, which seemed fitting. At the end of the #100daysofStrength, I made this video to document the experience. My dear friend (and fake brother) Casey Willis provided the beautiful music for the video. My friends, life never ceases to push us in ways that we don’t expect. The most important things have a way of revealing themselves to us, and the only constant thing is change. If I’ve learned anything in the past twelve months, it’s that I don’t know what is around the bend, and I need to focus on staying focused on the present day, the present moment. I’m grateful for the opportunity to share these moments with you, even when it hurts. If you take anything away from my story, I pray that it is this… that you have to live and love between the madness. Acknowledge and enjoy the good days, even if they aren’t perfect. Be strong. Push to be as active as your body and mind allow. Don’t be afraid to put in the hard work. Enjoy the people who surround you and fortify you, even on the difficult days. Allow the closest people to truly see you, allow them to catch you, and allow them to love you.
Thank you for taking time to relive the highlights (and lowlights) of my 2016, as this week, we look forward to the new year ahead. Cheers! Here’s to the relentless pursuit of everything important. Stay in the arena, Am 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, Am 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) Fear, to a great extent, is born of a story we tell ourselves, and so I chose to tell myself a different story from the one women are told. I decided I was safe. I was strong. I was brave. That nothing could vanquish me. Insisting on this story was a form of mind control, but for the most part, it worked. Every time I felt something horrible cohering in my imagination, I pushed it away. I simply did not let myself become afraid. Fear begets fear. Power begets power. I willed myself to beget power. And it wasn’t long before I actually wasn’t afraid.
Recently I’ve received several messages from parents of kids or babies with hydrocephalus, asking if I have any advice for how to proceed and support their children, with all the uncertainty and challenge that lay ahead. This question is one that I get often. I usually point people to my website, where they can read more about my story and the various treatments that we use to manage my health, and where I often blog about the emotional and mental toll that this condition can have on the patient, and everyone involved. But the best advice I have to offer is to not be afraid. Don’t be afraid to ask questions. They say that nobody has ever died from being too curious. Understanding that hydrocephalus is a complicated and totally frustrating condition to treat, approach your doctors with questions that clarify what their game plan is. Even if there is no clear answer to what’s going on during a time of illness (because that is often the case, unfortunately), knowing what the potential timelines and possible treatment paths will be will help you to prepare, and feel more at ease. Don’t be afraid to know as much as you possibly can about hydrocephalus, even if it’s overwhelming. Knowledge is powerful, and learning could lead you to a path of treatment that could change your life. Don’t be afraid to keep searching until you find a team of medical professionals that you can trust and communicate with. I learned this from my parents, who have always pushed for the absolute best in medical care for myself and my sisters. If you see a physician, and feel that they aren’t a good fit for you, just keep looking. Life with hydrocephalus is a long and winding road, and you are going to be in it for the long haul with your doctors and therapists. Even if you don’t have a lot of complications, it’s important to have that team assembled and established, just in case things change. Don’t be afraid of brain surgery. The alternative of being sick with a malfunctioning shunt (or worse) is much harder than healing from surgery. This is something I tell parents over and over again. It’s really hard when your child is young, and/or non-verbal, to understand what they are going through medically when the shunt isn’t working properly. Guilt and overwhelming sadness creep in as the word “surgery” enters the discussions. But never make decisions about surgery based on fear. Relief is so precious, and life is just on the other side of that difficult decision. Don’t be afraid to work at being healthy in every way you possibly can. My team and I preach this multi-disciplinary care approach to wellness, and I do my best to lead by example. Work at the mental and emotional battle as well, and seek help in this area if you need to (this goes for both patients and caregivers). Exercise, various therapies, diet, and lifestyle will not cure your hydrocephalus, but can greatly improve your overall quality of life. Don’t be afraid to live and love between the madness. Make goals and push to achieve them. Work and enjoy your career, if you are able. Love your friends and family, and those in your support system. Let your life be an example of rising above the challenge, without hydrocephalus becoming your only identity. And don’t be afraid of what lies ahead. All we ever have is the present moment. Seize it and feel every emotion, sensation, and minute that passes, good or bad. We only have to live each difficult moment once, but we also only get one shot at all of the beautiful moments in life. Stay present. And don’t let fear define your journey. Stay in the arena, Amy And I hear them saying, You'll never change things And no matter what you do It's still the same thing But it's not the world that I am changing I do this so, this world will know That it will not change me. I wrote these words to the Garth Brooks song The Change on a post-it note, and put it on my desk when I went back to work a few weeks ago, five days after my latest shunt revision surgery. I needed the reminder. My sixteenth surgery overall, and the sixth in just over a year and a half, happened fast and hit me like a freight train. I had been feeling pretty bad for about 6 weeks, but still functioning until the last weekend in August, when my brain decided it had enough. I suppose I should have been prepared for history to repeat itself, but that’s just not my nature, I guess. We only had three months to heal from the previous surgery, which just doesn’t feel like enough time. However, again and again, my body proves to be strong and resilient. I get through what’s needed, and start moving back towards my own brand of normal in as little time as possible. The hard work we’ve put into my rehabilitation and strength training this past year has been credited with my quick recoveries, and I am eternally grateful for my team. Recently I’ve had some interesting feedback in regards to me sharing my experiences with hydrocephalus on a public platform, and on social media. It seems that there are some people who don’t understand how and why I push myself so hard, and why someone who looks perfectly fine in photos is going through this much brain surgery in such a short time. As a mentor to young girls with hydro, I’ve had so many discussions on this subject; balancing a condition that is painful and dangerous with the fact that it is often invisible. Mentally, it’s a very lonely and isolated place to hide the suffering, but often it is easier, and sometimes it’s necessary. So, the question rises, why share? It’s only going to make people uncomfortable, and become your identity. Why would you want that? Is it for attention? Or likes? Or comments? With all due respect, I don’t share all of the painful moments. For one thing, I don’t think it’s necessary, and it’s not me. I’ve chosen a life of not outwardly showing the physical pain I’m in, until things are really bad. I have been blessed with an amazing life, with incredible people in it, and I would rather share those things and keep the focus on moving forward. And I don’t want or need the attention that comes from posting about the highs and lows of life with hydrocephalus. But yes, I understand that it’s hard for people to understand why. I share my life journey for a few very specific reasons:
I am sorry if the photos, posts, and stories of my condition and surgeries are painful to read and see. Truthfully, they are painful for me to write and share. Many times, I’ve had second thoughts before making posts regarding my hydrocephalus, and have gone through some pretty dark times, wondering if I am doing the right thing in being as open as I have been. But I press on, knowing that if each blog or post reaches just one person… someone who needs to know they’re not alone, it will be worth it. The Merriam-Webster Dictionary defines the word “advocate” as a person who argues for or supports a cause. In addition to advocating for this cause, I aim to prove to myself, my husband, family and friends, and the whole world, that I can and will get through these experiences, and remain proactive and aggressive. Even on the days when I’m beaten down and negative, I will stay in the arena, and battle back towards the light, seeking peace. I do this so this world will know, it will not change me. In relentless pursuit, Amy Here's a link to The Change, by Tony Arata, who wrote it. #musicheals 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 It wasn’t how I wanted to start my Monday morning, driving to my 8am meeting, with tears rolling down my face. From out of nowhere, this song seems to find a way to surface at the crossroads of my life, over and over. And it hit me like a freight train. Against the wind We were runnin' against the wind We were young and strong, we were runnin' against the wind The years rolled slowly past And I found myself alone Surrounded by strangers I thought were my friends I found myself further and further from my home, and I Guess I lost my way There were oh-so-many roads I was living to run and running to live Never worried about paying or even how much I owed Moving eight miles a minute for months at a time Breaking all of the rules that would bend I began to find myself searching Searching for shelter again and again As the second verse ended, and the piano break began, I reached over and turned the radio off. Get it together, Am. You’re stronger than this. Music has a way of taking me from “barely holding it together” to “completely destroyed” in about 3.7 seconds. It’s always been there to rip my soul from my being, then flood the space that remains. I pulled my car over to gather myself, and looked at myself in the rear view mirror. As I checked to see what the pupils of my eyes looked like, I noted how much my right eye is drooping. It never ends - I don’t get a break from the pressure or the reality, even if the rest of the world and those around me need a reprieve. My world is shifting, and my walls of protection have crept back up. Even though that’s a natural reaction to everything I’ve been through in the last 7-8 months, it’s not my intention. I’ve worked so hard this past year to share my authentic self, and face the darkest corners of my vulnerability, and I’m still winning the battle on so many fronts. I’ve taken a break, but I’m going to start writing again. And I’m going to go ahead and let the music take my heart, without resistance. I’m searching for shelter, against the wind, and I’m going to heal. Feel whole again. Trust again. Give again. Seek peace. And I need to get ready… and stay ready. I will. I am. Life is messy sometimes, friends. Don't let the weight of the yoke determine how far you're going to walk. Stay in the arena, Am June 16-19th, 2016, hydrocephalus patients, surgeons, doctors, researchers, and industry professionals from all over the world gathered in Minneapolis, MN for the 14th National Conference on Hydrocephalus. The Hydrocephalus Association (HA) put together an inspiring and informative set of classes and content, including several new topics and fields of study. Leading up to the event, I received a lot of messages and questions about whether it would be live streamed, or if there would be a way to access the talks via the internet. This year, the HA took a big leap, and offered a way for people to attend the conference online - and they had a good number of people take advantage of this virtual attendance opportunity. If you missed out on that, there are still a handful of the sessions that you can stream from their website, for free. If you can, please take the time to send a quick message to the HA to let them know that we appreciate the effort spent on providing this online content. It is very important for them to receive the positive feedback. I told you all that I would do a “post conference review” on the blog, so I wanted to re-cap a few of the highlights of my week in Minneapolis. I wish I could write down every experience for you, and summarize every single class/session. I had an amazing time, and made so many great connections with other patients and participants. Going into the conference, I knew that there would be a lot of people there that knew who I was, and knew my story because of my blogging. However, I didn’t expect that it would be so emotional meeting these people, especially parents of young children with hydrocephalus. Seeing these parents (and kids) in person was a good reminder of why I am doing this, and why the choice to put my life on a public stage is worth the vulnerability and pain. The mutual support and inspiration that we can bring to each other through simple connection and words of encouragement is invaluable when your life is continually turned upside down by hydrocephalus. The week was filled with tearful hugs and lots of photo opportunities. My blogging started on social media (Instagram), and at the conference I had the opportunity to meet with a couple of people who I’ve communicated with regularly for several years - Trine from Denmark, and Erin from Canada. It was incredible to have these face to face encounters after supporting each other from afar for so long… a perfect example of how the internet has incredible power to connect people. The conference started with a breakout session of Community Connections - which is where patients and family members are grouped by age and family relation, so they can connect with other attendees who are in a similar situation. I attended the group session for Adults Diagnosed in Young & Middle Age, where each person in a circle of 12-15 people shared their different circumstances and struggles, but found comfort in the common thread that weaves us all together. It was a great way to start the conference week, especially for first timers. Taurean Nixon, cornerback for the Super Bowl champion Denver Broncos, was the inspirational keynote speaker at the conference. Taurean has a younger brother who has hydrocephalus, who he is very close to. His story and drive to succeed in life to honor his little brother’s battle, was touching and inspiring. His road on and off the football field has been filled with ups and downs and incredible challenge, but his attitude is the true personification of relentless pursuit. Since I have siblings with physical and mental challenges as well, so much of what he had to say about family really resonated with me, and I am so glad we had the chance to meet. Taurean Nixon is the real deal, and has the capability of changing so many lives with his kindness and desire to reach out to people who are suffering. On Friday, I participated in a panel discussion on the transition from youth into adulthood, as it pertains to medical care and life in general. Dr. Michael Williams of the University of Washington moderated the discussion, which covered everything from finding an adult neurosurgeon after years of pediatric care, to making life/career plans, and communicating with doctors, parents and caretakers. The discussion was very well received, and I was very proud of our whole panel, which included a parent of a hydro patient in college, a high school student, a student recently graduated from high school, and a college student. (For more information on this topic, see my previous blog post on this subject) I was really encouraged by two things at this year’s conference. First, I felt like there was a greater focus on integrative care for headaches and chronic pain, with a class that presented alternative methods for treating pain, and several sessions that touched on the mental/emotional aspect of pain and chronic illness. In the past few years, my husband and I have taken a multi-disciplinary approach to my care, and believe it’s been a big part of my success. The class on alternative methods for treating chronic headache, taught by Scott Schwantes, MD. included one of the best explanations of chronic pain that I have ever seen or heard. Dr. Schwantes showed a graphic depicting the pattern of chronic pain, that includes the trauma and the resulting cycle of pain that is fed by many factors, and creates it’s own patterns within the nervous system. It’s something I have experienced myself, and I found it to be very interesting. The second thing that was inspiring and encouraging to me was the new research on shunt failure that is being done in the United States. I had the pleasure of meeting and getting to know Dr. Carolyn Harris, PhD. from Wayne State University, who is doing a fascinating study on why shunts occlude. Seeing the slides she had with the different types of cells attaching to the shunt valves and tubing, gave a new perspective and reality to the fact that there are still so many aspects of hydrocephalus that are unknown and misunderstood. Until we have the information we need on what is happening, there will remain a lack of new treatments and solutions to the same issues that continue to plague us as patients, causing repeated surgeries. You can help! Dr. Harris is collecting shunts (all parts) that are removed from patients, for her study. She needs as many shunt parts as she can get, to expand her research. If you are going to have a surgery, and you think your neurosurgeon would be willing to save the parts for her, please contact her at caharris@med.wayne.edu to get instructions on how to contribute. One of my favorite parts of the conference is always the Dinner Dance & Talent Show that happens on Saturday night. My heart swells with pride, as kids of all ages get up to dance, sing, and perform in front of a loving and supportive audience. It’s truly beautiful to see them smiling and laughing, feeling comfortable in their own skin, safely surrounded by others who understand their battle. On Sunday, we wrapped things up with an intergenerational panel discussion entitled “A Patients Guide to Thriving”. Once again, I was honored to be asked to speak on my experiences. Especially since I was only about three weeks post-op, sharing my story brought up how blessed I am to have the support that I receive from my husband, family, and friends, as well as my medical team. As I answered the questions and looked out into the audience, I encouraged my fellow attendees to look around at the people who stand in battle with them every day, and to recognize the sacrifice and commitment that those people have made to stay in the trenches beside them. This inner circle of people in my life are the reason I am able to thrive. Whether I am struggling through a shunt failure and feel like I want to quit, or I’m flying through a surgery and making it look easy, I thrive because they have made me physically strong and emotionally safe. As my life continues to change, and my journey has become so public, I cherish this security, and will do whatever is necessary to protect these bonds. These are the people who see the real pain, who pull me through the difficult moments that aren’t depicted on social media, and who hold me in the dark. But most of all, these are the faithful souls who are experiencing this life with me - who feel a pain of their own, physically and mentally, every time we go through another chapter. And for that commitment, I owe my life. I hope to see you at the next National Conference on Hydrocephalus, in 2018. Be well, and stay in the arena. Am Next week, I will be speaking at the 2016 National Conference on Hydrocephalus, an event put on by the Hydrocephalus Association. I’m so excited and honored. In addition to participating in a few other aspects of the conference, I have been asked to join a panel discussion on the challenges that hydrocephalus patients face when transitioning from youth into adulthood. The years in which a child becomes an adult bring so many changes - not only in medical care, but sometimes in living situations, schooling, relationships, and/or jobs and career planning. Over the past few years I’ve had the pleasure of connecting with many parents of children with hydro, and I recognize that one of my primary roles in this community has been to encourage many moms and dads, who worry about what their little one’s adult life might look like. Even though there are a lot of “high functioning” adults with hydrocephalus out there, I think people have gravitated towards my husband and I because we are active and positive, and very open with my story. Despite the fact that we have had a rough road with my shunt over the past several years, we keep working hard at keeping me healthy and happy. Don’t get me wrong; we are human, and have many frustrations and heartbreak. But we remain a united front, and we refuse to be complacent - instead we take an active and aggressive role in my care, and that has worked well for us. Since the Hydrocephalus Association approached me with this speaking topic, I have spent a good deal of time reflecting on my own path. For those of you who aren’t able to attend the conference, I wanted to share a bit of my story, and a few of my thoughts on the subject of transitioning from youth into adulthood with hydrocephalus. MY STORY I grew up in a large family. I’m the second born of seven children. My parents are healthy, but in addition to my hydrocephalus, I have two sisters with juvenile rheumatoid arthritis, which is a devastating illness, as well as a sister who is mentally delayed. My sister Lisa was very sick from birth, and has spent her entire life battling her condition (arthritis) every day, which is very debilitating. As she grew, I watched my parents advocate for her not only medically, but also in school, hobbies, and in life. They relentlessly sought out and tried all types of therapies, searching for solutions for her pain and ways to help her have better function. Most importantly, they never let her believe that she was not going to be able to be a fully functioning member of society. As a result, she grew up to be a confident, social, smart, and beautiful human being. Despite spending at least half of her junior high and high school years laid up in bed recovering from various joint surgeries, she not only finished high school, but she finished at the top of her class - valedictorian. As an adult, she lives independently, owns a home, and has a very successful career. She is my inspiration every day - and the example she sets keeps me moving forward. I’m thankful to my parents for showing me by example how to gracefully navigate life with medical challenges. I was diagnosed with hydrocephalus at age seventeen, so I had fully grown and developed before it was discovered. The hydro had gone undetected for an unknown length of time, but it was suspected that it was years, based on the severity at the time of discovery, and the size of my ventricles. (*See “My Story” page for more information on my medical history) As a healthy and active teen who had never had a major illness or medical event, I was instantly thrown into the world of CT scans and MRI’s, hospitals, and ultimately, brain surgery. My entire life was put on hold until further notice, including schooling. Not only did I have to take some time off from high school, but college was indefinitely put off, until my health could stabilize. I was an excellent student and a champion fiddle player, with aspirations to become a professional musician, so I was devastated and totally lost as I tried to grasp the fact that life had just been ripped out from under me. Just like they had with Lisa, my parents flew into action, and got me the best medical care they could find. When things didn't work out with one neurosurgeon, we got different one. When I kept suffering from epic shunt failures, they looked for another option, and we found a surgeon who would perform an ETV surgery for me. They stayed positive, and they were always encouraging. But most importantly, they refused to let me wallow in self pity and doubt regarding the whole situation. Instead, I participated in my doctor’s visits, was expected to speak up and answer questions, communicate with my medical team, and make alternative plans for the years that followed high school. If it wasn’t safe for me to move away to college (or Nashville), I was to find a job and start living my life as if it was moving forward. I am forever grateful for the high expectations that were placed on my shoulders, and for the big push in the right direction…. because it made me who I am today. Ultimately, it also gave me better coping skills, and shaped the way I manage my hydrocephalus as an adult. My husband Clifton and I have a mission statement; to live in relentless pursuit of everything that’s important. In life, anything you want to accomplish will take a certain dogged determination. This includes love, health, career, and relationships. If you aren’t willing to throw yourself at a goal with reckless abandon, you may never see the full potential of what you desire. As a mentor to young girls who have hydrocephalus, I’ve had this conversation over and over again. There are many paths that lead to success in life. One person’s version of success might be completely different than another’s, but they will take equal relentless effort to achieve. MY ADVICE ON TRANSITIONING:
I get a lot of questions regarding intimate relationships/boyfriends/girlfriends - because these transitioning years is the time period that those things start to get serious! The advice that I can offer in this department is as follows:
In closing…. Hydrocephalus often leads us down a very difficult road, but love and life are well worth the battle - and it’s our choice to keep the wheels turning. If you have goals, believe in yourself - that you can and will do whatever it may takes to reach that success. If you are willing to work towards these goals in relentless pursuit, I BELIEVE IN YOU. I believe that you will persevere, overcome obstacles, and be the best version of yourself. #stayinthearena All my best, Amy Photo: Lauren Rodrigues, one of my hydro girls, and I - Lauren is currently in her freshman year of college, and just got into nursing school! |
AuthorMy name is Amy but friends and family call me Am. I am a lover of dogs, good whiskey, and strength training. I'm a brain surgery survivor (x31), a fiddle player, a construction designer, and a boxing enthusiast. I have six real siblings, and five fake brothers. I love deeply, and consider my close friends to be family. Archives
February 2022
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