Amanda, 22

There I was, standing in front of a group of occupational therapy (OT) students, as one asked, “Do you ever wish you didn’t have hydrocephalus?” My response? Simple. “I am so blessed to have such a diagnosis- it makes me appreciate the good days, and makes me realize how valuable and precious health truly is. It’s also the reason I am here today, advocating and spreading awareness about the condition to make others aware of the diagnosis.”

As an infant, I was easily agitated, restless, and had difficulty accepting care from my caregivers. At the age of six months, after numerous doctors’ visits, I experienced my first neurosurgery for a shunt placement after my diagnosis of congenital hydrocephalus. Throughout my first 16 years of life, I experienced 15 neurosurgeries, due to the constant shunt failures, malfunctions and shunt infections. As a result, this process impacted the way I experienced my childhood, by spending most of my time in the nurse’s office in school, and visiting doctors and hospitals over the weekend more so than I saw peers of my age. At a young age, I felt isolated in class due to my inability to pursue friendships, knowing relationships were hard to maintain, because of my unpredictable health condition and frequent absence in class due to my symptoms.

I struggled to find the right doctor, the right shunt, and I gradually began to accept defeat after the countless unanswered questions. During the difficult journey, my mental health was greatly impacted, and as a result I encountered feelings of depression and ongoing general anxiety, which further impacted my participation and engagement within school, creating a vicious cycle that I could not control. My feelings of helplessness and unanswered questions from doctors brought me to my weakest points. More trouble arose when “Top Doctors” on the east coast interpreted my headaches, fainting spells, vomiting, and papilledema as signs of mental health conditions, rather than hydrocephalic related symptoms. I was repetitively misguided towards treatments that were not facilitating my well-being, but rather, hindering it.

Fast forward 15 years to my sophomore year in high school, and there I was getting ready for sleep on a Monday night- brushing my teeth, packing my backpack, double checking my homework. Little did I know, at two o’ clock I would be abruptly awoken by a headache so severe that would leave me virtually incapacitated to navigate myself to my parent’s room 20 feet down the hall. There I was, getting rushed to the hospital by my mother driving, knowing exactly what was happening- another shunt malfunction. During this exact stay at the hospital, I not only experienced a shunt malfunction, but I also sustained a shunt infection which required a week’s worth of shunt externalization. After my month long duration in the hospital I had undergone four neurosurgeries in less than thirty days.

As a result, my participation in school differed from many of my peers who attended my high school. With my constant trips to the hospital, it was not uncommon for me to have tutors visit to administer tests and quizzes, and for my nurses to quiz me on my vocabulary words, because as I always told myself, “the show must go on.” Though I felt isolated and withdrawn from not experiencing my adolescent phase like my peers were, at the age of 16, I began to accept that my difference should not stop me from participating in the things I love and find meaningful. After my discharge, I not only experienced the first sensations of what it felt like to be truly healthy and symptom free, but I began to see life from a whole new perspective. After my procedures, attending school without a nurses’ visit was exhilarating, tests were seen to be an exciting challenge, and I thrived on finally having the chance to fill my role as the student I always wanted to be.

Now, at the age of 20, studying OT at Thomas Jefferson University, I carry this emotional and meaningful story with me… into every classroom, into every room to see a patient, and anytime I step foot into a hospital. I have learned through this impactful experience that my condition should not be viewed as a hindrance towards my experience of becoming a professional in healthcare, but rather a facilitator, as it drives me to want to assist individuals to reach that satisfaction of feeling health and well-being for the first time like I did.

Growing up with a condition, such as Hydrocephalus, changes the way I experience the process of being an OT student- though I am healthy and symptom free, with my condition stable, at any moment the rug can be pulled right from under me, bringing me back to the same memories of shunt malfunctions, infections and mechanical failure. Knowing the competitive manner of the intense course work, when the thought of health complications crosses my mind, I am reminded that my condition is unpredictable, and constant, and I, myself, am not invincible, as my mind would like to think.

I am vividly alert to the fact that a shunt replacement is indeed, a possibility within my future, but whether it be tomorrow, or ten years from now, is what is unsettling for my mental health. As a reminder, I constantly remind myself that if I was able to undergo the process 15 times, I can handle anything that comes my way. I have become more aware of my body sensations, more cautious about eating healthy, and attentive to my environment (as I am cautious of protecting my head to avoid injury).

By having the unseen advantage of seeing through the lens of a patient, it has also made a significant impact on how I view, approach, and empathize with my patients during fieldwork rotations. Having a strong support system like my family and neurosurgeon team was a key component in getting me through the most difficult times while recovering. I now, understand the value of incorporating the family into the treatment process, and know the diagnosis influences more than just the individual- the ripple effects impact the family in a multitude of ways. Reflecting, I ask myself, what is it about my neurosurgeon team that made them so uniquely exceptional? Their client centered approach, and ability to listen to not only my thoughts and concerns, but also my family’s. No rock was left unturned when discussing options for next steps- and decisions were made as a team rather than being told to me without my input. It is empowering for me, as the patient to have control over the decision process as well, since through my troublesome time, I felt nothing but helplessness. Carrying these realizations into the clinical practice, as a future OT, I will strive to not only remain client-centered, by family-centered as well.

Incorporating this realization into client- centered care will better assist me with the development of building a rapport, utilizing therapeutic use of self, and empathizing with clients. Additionally, I hope to empower my future patients the way my neurosurgeon team did for me during my most challenging experiences.

Understanding the story and personal journeys of patients is something I am very passionate about, since I know how deeply my story molded me to whom I am today. It is of great importance to me to also understand the impact on occupational performance and the numerous roles a condition impacts as a client, and to be mindful the importance of each one. Additionally, I keep my attention vividly keen to understand that not all diagnoses present the same. Just like life, diagnoses are not perfect either. It is vital to understand that as a soon-to-be practicing clinician, patients are not going to present black or white- each individual is going to be their own beautiful shade of gray. Through my roller coaster of an experience, at the age of 16 I found my beautiful shade of gray, and I am eager to help my future patients to do the same.

Through the process of not only learning about OT, but also learning more about myself, I felt empowered to want to spread my story and to advocate for others who too, experience health conditions that impact occupational performance. As a result, my colleague, Karly Brown, 23, who experienced a stroke at the age of 21, and I, have set out on a mission to advocate and to spread awareness about conditions such as hydrocephalus and strokes. We have had the great honor to present our stories for OT students and practicing clinicians at Thomas Jefferson University, Philadelphia University, Richard Stockton University, Temple University, and Misericordia University.

I hope others will be able to recognize, as I did, that a diagnosis could happen to anyone and to never assume all symptoms and patterns will present identically like a textbook case. A diagnosis does not favor the young or the old, lower class or upper, race or culture. Through spreading awareness, I hope to open the eyes of others to the fact that behind every diagnosis- there is a very unique individual, one that has a lot of skill and beauty that the world needs to see.

 

Tell us about your journey with hydrocephalus!

Hydrocephalus affects each of us differently. Share your story with us! We will feature the amazing individuals in our community on our website and through social media.

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If you would like to share your story, please email it to: ines@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.

 

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