Transitioning from Youth to Adulthood with Hydrocephalus

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:

• KEEP MOVING FORWARD - even if it’s baby steps. My neurosurgeon has often told me to “be a moving target” so the hydro doesn’t catch me. Make clear and realistic goals… then push the limit a little bit. Always shoot for something just beyond what you believe you have the ability to achieve. This is what keeps us striving to improve. 

• COMMUNICATE - From the earliest possible age (this is different with each patient), in their appointments, the child should be encouraged to speak directly and interact maturely with their neurosurgeon, neurologist, and other physicians involved in their care. This will start the skills of communication that are necessary as an adult, and reduce the amount of anxiety that comes with dealing with medical professionals - which can be intimidating for many people. 

    **Note: This means when the doctor asks a question, the child             answers - not the parent. This is really hard for most parents, but it is         crucial. 

• ACCURATELY ASSESS YOUR CONDITION - Learn to accurately and consistently track your symptoms. There are many different ways to do this, and it depends on the severity of your case of hydrocephalus. In my case, we do extensive journaling of my day to day headaches, sleep patterns, and workouts in the gym. These are all things that give us major clues when my shunt is failing. If you are fortunate enough to have a low occurrence of shunt issues, you definitely don’t need to do all of that. However, as the child transitions into teen years and beyond, it is crucial to establish a way of keeping track of the baseline, so that if there is a deviation from that baseline, action can be taken. 

• MENTAL HEALTH - Be conscious and vigilant of your mental and emotional health. Over the past couple of years, I have had the pleasure of connecting and mentoring many young women with hydrocephalus, from all over the world. By far, the most prevalent issue that I have seen in all of these patients is anxiety. Hydrocephalus is a condition that brings an underlying level of uncertainty to even the most stable of patients. Thoughts are shaped around the fact that if your shunt or ETV may fail, your life could go into a tailspin at any time, without warning. Then, there’s the trauma of all previous episodes, which can haunt an individual with hydro for years - even if they have been symptom free. My husband and I have taken a proactive and aggressive approach to my mental health - I have a psychologist who specializes in patients with chronic illness/pain that I see when needed, in addition to a general counselor, who has been very supportive to me over the years. It’s important to establish this care even when times are stable - so those relationships are already formed when the storms of life hit. 

• LEARN TO WORK FOR IT - As you transition from youth to adulthood, I believe it is really important to assess the overall health of your body (not just your brain!) and to commit to finding the best fitness level possible, inside and out. This takes a lot of effort, hard work, and determination. Each patient will find a different path to this overall health. For me, it includes nutrition, physical therapy, occupational therapy, massage, meditation, and physical fitness in the form of strength training. Every day I wake to new challenges, but I truly believe that the work that I put in now will pay off later in life. 

• RELATIONSHIPS/SUPPORT - Personal relationships shape the story of your life. No time period is more crucial than the years that you are transitioning from youth into adulthood. Focus on the true friends that are able to walk through the challenges with you. If you have a close friend or two, spend the energy to cultivate those relationships - and don’t let your medical issues dominate all of the conversation and interaction. Friendships are about quality, and not quantity. Making sure that the relationship is balanced will go a long way towards a lifelong friendship. 

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:

• a) Your significant other needs to truly want to understand your condition, and what the affects/needs are - that can not be taught or forced upon someone. If you don’t feel like you are offered enough support without having to ask for it, you might want to reassess the relationship. 
• b) You should not be made to feel bad if you don’t feel good, or you need to seek medical attention.
• c) If the relationship is important to you, you will have to recognize that the hydrocephalus is going to be a stressor and burden in some ways for your partner. I know that sounds kind of negative, but it’s just reality. The stress may come and go, but you need to acknowledge that that person has committed to standing by your side during these painful and difficult times. Remember to always give affirmation to your significant other for the love and care that they put into supporting you… it will go a long way. 
• d) Establish relationships with general counselors, separately - so that when times get tough or stressful, you have someone you can immediately turn to, to vent and dump off thoughts to - someone other than your spouse. This will strengthen your bond and trust, and give you more security and peace. 
• Once a relationship becomes serious, decide together how involved your significant other will be with your medical care. Does he/she want to attend your appointments? Meet your doctors? Or is it best for you to continue to all of this on your own? These are all questions that are going to be different for every couple. Make sure that you discuss all of these aspects and come to an agreement, so expectations are clear and there are no hurt feelings. 

• HAVE A GAME PLAN - If you are moving from your family’s home, perhaps to college or to your first apartment, it’s important to sit down with your parents or caretakers and come up with a protocol for your medical care, and a game plan for what will happen if you have a medical issue. Be as clear as you can, and talk through as many scenarios as possible. This will make all parties feel more confident, and will soothe some of the anxiety that comes with these big changes. If you are moving away, decide where your medical team will be based, and take the steps to move your case to a new physician, if needed. If at all possible, I suggest doing that before you move out of your parents (or guardian’s) house. All of the appointments and paperwork that can come along with changing doctors can add a layer of stress to a time in your life when you are already adjusting to many new aspects of taking care of yourself. 

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! 

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