Two weeks ago, Clifton and I lay in bed in the middle of the night, just hours before our 6am check in at the hospital. I was heading to surgery for the second time in a week, and we were trying to get our heads wrapped around the situation we were about to embark on. As often happens the night before surgery, we laid awake for a good portion of the night, listening to music and talking. When I was finally tired enough to fall asleep, Clifton wiped my half-dried tears and asked me what I was most looking forward to the next day, and I didn’t even hesitate. “I can’t wait to see Dr. Yundt in pre-op; because then I know I’ll feel better.”
The next morning, for the ninth time in just over three years, we prepared for shunt surgery, going through the motions of all of the preparations - the paperwork, the IV, the infection prevention wipes, the sticky plastic-lined heated paper gown that hooks up to a warm air supply. Waiting. Watching the clock. Wishing I could have a sip of water. Listening to more music and breathing. The nurses at St. Charles Medical Center in Bend, Oregon are amazing. They are positive, empathetic, and encouraging. But almost all of them recognize us now, which means we’ve been there too much. We answer the same questions over and over. “Aren’t you from Salem? Why do you drive three hours to come over here for care?”
And the answer doesn’t ever change, again, without hesitation… “for Dr. Yundt.”
Then, he comes in, finally, and takes his sharpie and marks my forehead. Looks me directly in the eyes. Softly curses how much hair I have. Jokes about shaving it all off. Asks me what kind of music we should listen to in the operating room. Asks Clifton if he has any questions. Then, it’s over. The waiting, the wondering, the pain. By the time I wake up, almost every time, it’s immediately better. And as soon as I see him, I’m thankful, and I feel better.
Navigating life with hydrocephalus is a tricky balancing act. I want desperately to be as healthy as possible, and I’d love to never have another brain surgery, but unfortunately, that’s probably not my reality. I’ve never had a shunt last longer than 18 months, and it’s complicated. So I’m not sure where I would be if I didn’t have a neurosurgeon who I can completely trust. The battle is so convoluted and twisted at times. Confusing and frustrating are words that don’t even begin to describe the emotions involved in trying to stay on top of symptoms, surgeries, and recoveries. And I am lucky, because I have found a surgeon who is a good fit for me. I feel like I can tell him anything - even in the most difficult of times. I work hard at not questioning his decisions when it comes to my care, and I work even harder to make him proud of me, always. I want him to know that I’m doing the absolute best I can, and even if I’m not perfect, I’m going to give it my all, every time.
The night before the very first time Dr. Yundt operated on me, Clifton and I sat in his office and had a meeting with him about the path that lay ahead of us. It’s crazy to think that at the time, none of us had any idea what that would truly mean. We went through the general outline of the procedure, what the game plan was, and what to expect. He asked us if we had any questions. Then, he said something to me that I will never, ever forget. He said, “Ok, here’s the deal. From tomorrow forward, it’s my job to make the decisions about what happens with your shunt. I’ll need you to follow my lead on that. And from tomorrow forward, it’s going to be your job to get as healthy as possible, and live the best life you can, in between whatever may happen.” In that meeting, he asked me to agree to that. I looked him in the eyes, and promised him I would trust him with the decisions regarding my shunt. In the three years that have followed, I’ve been scared, I’ve been frustrated. I’ve been in pain. I’ve been angry. I’ve been hurt. I’ve cried, I’ve sobbed, I’ve wept. And I’ve worked at getting healthy, and staying strong mentally and physically. I’ve trained and I’ve fought. I’ve tried many different therapies and treatments to do my part, and keep up my end of the bargain. But I have never gone back on that promise. I trust the hands that hold my head. Because he asked me to, and I told him I would. Sometimes that’s all you have; trust in the midst of chaos.
Happy New Year, friends.
Here's to the relentless pursuit of everything important.
Very few people are just born with the ability to bounce back from adversity, with relentless tenacity. To laugh in the face of challenge, and scoff at the idea of giving up. Instead, choosing love so hard and play with so much joy, that the world looks at them with a certain level of envy... despite the unbelievable circumstances they wake to every day.
My sister Lisa is one of those people. She is an absolute fucking champion. She wakes each day to reality and pain most of us would crumble beneath on our best day -- and smiles, laughs, loves, and gives - more than most of us do on our best day. She's never allowed her physical condition to hold her back from having beautiful relationships, crushing her goals, and just being a general all-around bad ass.
When we were growing up, she was tiny. The juvenile rheumatoid arthritis that she was born with stunted her growth and twisted her fragile little body. I, on the other hand, was strong and tall. At 22 months younger than me, she was about half my size by the time we were in grade school. So, I carried her on my back, everywhere. To the school bus stop, at the grocery store, on field trips for school. Piggy back. It never crossed our minds that there was anything unusual about this. It was the easiest way to help her keep up with everyone, and keep her safe.
At the time, it seemed totally natural for me to physically carry her. I could, so I did. Neither of us had any idea that inside my brain, something wasn't right, and that later on, at age 17, I would start my own physical battle. And Lisa might still have no idea that in the years that have passed since my diagnosis with hydrocephalus, it is she that has carried me - not physically, but mentally and emotionally. It is she who has taught me to fight like a girl, and to never give up. I think of her when I don't feel good, when I don't want to go to work, when I don't want to lift weights. Her tenacity to survive multiple joint replacements and reconstruction surgeries reminds me that this is totally doable, even when it sucks. It is her open heart and loving soul that has taught me to enjoy all the good things in life, and that sharing your life with other people can push them along in conquering their own struggles.
Thanks for carrying me, Lis. You are my hero. My true relentless warrior.
I love you more than peanut butter loves jelly.
Truth: This year I'm even less prepared for Christmas than I usually am. I haven't ordered holiday cards, or purchased a gift for my husband. Not that I'm too worried about it... Christmas has never been a big deal for Clifton and I from a material standpoint anyways, and this year our focus is once again shifted to just being together. As you all know, our lives took a sharp left hand turn a couple of weeks ago, when I ended up needing two shunt revision surgeries in less than a week, with some unexpected complications, and we are working our way through the beginning of what is proving to be a difficult recovery.
What we are going to give ourselves for Christmas is an entire weekend "away" from my shunt and the worries that come along with it. We are going to spend time with our family and friends, and take time to appreciate the things that we have, and the time that we have together.
In reflection, I have already received so many amazing (true) gifts this year, that could never be replaced. For these things I am eternally thankful, because these are the gifts that can't be bought:
For these gifts, I can not express the depth of my gratitude.
Merry Christmas to you all.
Humbly, with much love,
In the summer of 2012, I made some decisions that changed the course of my life forever. At the urging of my neurosurgeon, I completely overhauled my lifestyle, with a new focus on getting strong and healthy. I did all of this so that I could be better prepared for any future surgeries that would be required to treat my hydrocephalus.
In the years since then, and in the numerous surgeries and recoveries that followed, I have learned more about what my body needs to persevere through this journey we call “shunt life”. The most important component has been strength. The stronger I am physically, the easier I seem to get through the surgeries and the difficulties of recovery. Second to strength, is endurance, which I really don’t train for. I don't run, bike, or do any cardio exercise to specifically improve my endurance. Most of the time, I just rely on my strength to carry me through life as needed.
However, mentally, I am finding that this battle takes more endurance than strength. I am learning and accepting that I don’t have to be strong all the time, especially with those in my inner circle. It’s ok to be heartbroken, angry, and frustrated from time to time, especially when only months pass between shunt failure episodes, and I grow emotionally weary of the fight. But I have to stay steadfast, for the long haul. Sometimes my husband has to remind me that I have the endurance to complete this race. That it’s a long road, and I am not alone. There are others who have the same persistence, who walk by my side, and we will carry each other if the climb is too much at times. In this case, I must rely on my endurance to make me stronger.
The long road of my hydro journey took another turn this morning. After the easiest shunt revision surgery to date (at the end of July), and the best recovery in years, my shunt is once again in failure, and we found out that I am headed to surgery tonight. Right now I feel a mix of emotion that ranges from annoyance and defeat to exhaustion and relief. But I have to remind myself that it is the physical strength and the mental endurance that I know I have, that will carry me through this episode, and whatever the next steps may be.
Tonight, we’ll hit the reset button, and start again, 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 (x29), 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.