Recently, I came to the conclusion that living with hydrocephalus is like riding a roller coaster. We spend day after day wondering if my current shunt is working, recovering from the latest greatest surgery, riding the waves of pain that come with the ever-changing pressure inside my skull- which is affected by every single aspect of life itself. When the pressure doesn’t cause the pain, the physical trauma from multiple surgeries a year does. I never know how I’m going to feel from hour to hour, minute to minute. Sometimes I’m doing well, and we are incredibly happy, but when I’m doing poorly, we are so low.
The medical aspect of life with hydrocephalus is not the only roller coaster. Many of you can relate to the emotional and mental ups and downs that I’m referring to… where you simply hold on for dear life, and hope you’ll survive the adventure with as much of your psyche in tact as possible. The months get counted as victories, as we hold our breath in between failures, like giant swells on the twisting, turning, terrifying ride of my life. It all goes fast- really, really fast, and feels completely out of control at times. So many hydro patients and caregivers suffer from anxiety and depression as a result of the uncertainties of this path, and it’s easy to understand why. I believe that the mental and emotional roller coaster can be ultimately more damaging than the physical journey. A few precious people are riding this roller coaster with me, and there are lots more supporters standing close by, watching us scream our way through mid-air, strapped to hospital beds and MRI machines like they are seats on the twister. Sometimes we cry in fear, and sometimes our breath is simply taken away by the sheer force of gravity. In the end, we all get through it together, but it takes it’s toll on everyone. The irony is that I know that riding a roller coaster is a horrible idea for me. It’s hard on my brain, which is already stressed out, and even the gentle G force of a swing set leaves me dizzy and off balance. So, if roller coasters in the literal sense are not good for me physically, what about the other types of roller coasters? The mental and emotional highs and lows do the exact same thing to my nervous system as the physical affects of a carnival ride. Heart rate and blood pressure rise. ICP is affected. Tension comes in the form of headaches and other neuromuscular pain. My PTSD symptoms flare up and are increasingly difficult. All of these things wreak havoc on my central nervous system, and I have come to understand the negative affect that it has on my physical healing and recovery. The year I had medically in 2015 was the epitome of a roller coaster ride. In addition to the issues with my shunt and the four surgeries that followed, my job was incredibly busy, and at times I was overly critical of myself when I had trouble keeping up with my work and personal life. However, I’m doing a lot of work on my mindset, and something is starting to shift in my heart. Only I have the power to experience the roller coaster differently. I know it’s always going to be there, and I might be watching it, but I’m not actually obligated to ride it mentally and emotionally. At this point, I don’t want to participate in the drama. I want to approach my life, including my battle with hydrocephalus, at a steady pace, staying under the threshold of chaos inside my mind, which will then keep my body more calm and rested. A large part of this it that I’m starting to see and feel myself separate from my illness, and from some of the other stressors in my life. Even if these difficult situations are still present, I’m not identifying with them the same way. They are my experience, not my identity. I am not hydrocephalus; I have hydrocephalus and I am managing it the best I can. I am not a stressful project; I am Amy, and I organize a circus of stressful projects at times. I’m also actively working on seeing my relationship with myself in a better light. Historically, I have been painfully hard on myself, and have super high standards of expectation. Don’t get me wrong - I don’t want to lose my passion, or the fire that drives me, and connects me so strongly to the people I come in contact with. But I understand that I must learn to experience life from a different perspective, because otherwise, I’m going to crash and burn. So, this is my confession, my awakening, and my vulnerability - all in one. I’m working on taking things a day at a time, a surgery at a time, and trying to learn to stay on the sidelines from a mental standpoint. I’m trying to rest when I need to rest, unplug when I need to unplug, and editing my thoughts, worries, and expectations. I know this will calm my nervous system physically. And at the end of the day, I know I’ll have more emotional peace; which ultimately is the true relentless pursuit. Much love, Am
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The yellow post-it note on my mirror this week says "just because it's hard is not a valid excuse". We are six weeks into my latest recovery. Overall, the recovery from the back-to-back surgeries I had in December has been one of the easiest we've had to date. I was strong, I bounced back pretty quickly, and my wounds sealed up beautifully. But the past two weeks have been pure hell.
Why is that? Who knows. ...Because it's brain surgery? ...Because I had two brain surgeries in less than a week? ...Because I had a seizure in recovery and they put me on medication that makes me feel terrible? ...Because I'm just exhausted from pushing so hard? ...Because (contrary to popular belief) I am NOT Superwoman? Yes. All of that. It's really hard not to dwell on the fact that something might be wrong. It's almost impossible to be in this much continuous pain so soon after surgery, and not wonder if this revision is not going to hold for longer than a couple of months. But ultimately, I have no control over any of that. Sometimes all you can do is just get through the shit, one day at a time. Sometimes, one hour at a time. You just have to trust what you know, and stay the course. I've been working, and this week I was able to get to work every day. I've been putting in my rehabilitation time, and this week I made it to the gym twice. I'm resting when I need to rest, eating the best I can, and doing everything I can to right the ship. And at the end of the day, that's all I can do. If I do everything I can, and my body still decides it doesn't want this shunt, I'll know I left nothing in the tank. Stay in the arena, my friends. Sometimes the arena is where the magic happens. #relentlesspursuit Am This morning, Facebook sent me this photo as a memory from a couple of years ago... And it made me smile, so I wanted to share. First, because I love this photo of Bella; it captures her perfectly. And second, because this photo was eight surgeries ago - right before my shunt revision in October of 2013. It makes me smile that my neurosurgeon has been able to save my long blonde hair for all these surgeries... Even though he teases me so much about it, he always finds a way to make it happen (even if it's just a partial shave).
Much love, Am When the rain is blowing in your face, And the whole world is on your case, I could offer you a warm embrace To make you feel my love. When the evening shadows and the stars appear, And there is no one there to dry your tears, I could hold you for a million years To make you feel my love. (Bob Dylan) This holiday season has been a blur, for obvious reasons. I've been embattled with incredible challenge, but showered with relentless support. And I just want you all to know, I can feel your love. I've received phone calls, voicemails, emails, texts, and social media messages from loved ones and fellow hydro warriors from all over the world. I feel your love. I've been held in long embrace by dear friends I haven't seen in days, months, and years. I feel your love. I've been brought to tears by music sent to me by a best friend. I feel your love. I've smiled and laughed via FaceTime with my three absolutely gorgeous nieces. I feel your love. I've traveled through the beautiful snowy mountains with my amazing husband, to have the staples from my incision and start our next chapter. United, we stand in battle together. I feel your love. Always tell the important people in your life that you love them. Here's to the relentless pursuit of love and life. Happy New Year. Much Love, Am 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. Am 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. Am |
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
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