Surviving College with the Ups and Downs of Hydrocephalus

By Caitlin K. Maynard, Guest Blogger

You are excited and have mentally prepared yourself to go to college or graduate school for an ascribed time. As an adult with hydrocephalus, you may have an important question that consumes your thoughts. “How do you stay positive in those years of college or graduate school when it might take longer than four years to graduate?”

College or graduate school is an exciting time your life. You may have moved away from home for the first time, you are forming lifelong friendships, and gaining knowledge and skills that will help prepare you for your career. In addition, you are transitioning into adulthood; figuring out who you are and trying to find your way in the real world. What happens when hydrocephalus disrupts your studies? Hydrocephalus is unpredictable. This means complications with your shunt or ETV can occur. When this happens it can be devastating as you were finally getting into a rhythm and enjoying your independence.

After a revision (surgery), going back to school can be challenging. Below are several tips I have compiled to help you overcome this difficult time:

• First…Don’t Panic! Many people feel anxious about returning to school after an extended leave of absence. The comforting news is that colleges have procedures and processes in place that help make transitioning back into school as easy as possible. I encourage you to research the procedures at your school ahead of time.
• Perseverance to go back to school is something you need to find within yourself. Perseverance is the drive to keep going despite challenges, and the flexibility to adapt and change plans when necessary.
• If you do not feel strong enough, look to your support system for help. Reach out to your family or friends to help you find the strength to get back into a routine and return to school. 
• Be realistic about what you can do. It’s important to set reasonable goals and expectations for yourself. Start small and build-up as you are able.
• Think “life success”! Success in life depends on things like a healthy sense of self, the willingness to ask for and accept help, the determination to keep trying in spite of challenges.

Here’s how I overcame a tough time during graduate school: It was Easter break during my time in graduate school. I went home with a bad migraine but attributed it to stress. The very next day I was on my way to the hospital!I remember being in the hospital thinking about all the homework I needed to do and the fact that I was “on vacation.” All the necessary tests were performed and nothing was found. My neurosurgeon said he would do exploratory surgery as clearly there was an issue. All went well, I felt great, and returned to graduate school only a day later than planned. Surprise! A week later my neurosurgeon called to inform me that I needed to return home for tests, as part of my shunt had been infected. I attempted to bargain with him as I only had a few weeks left of graduate school. He explained to me that the infection needed to be looked into. Reluctantly I returned home, underwent some tests and began treatment for the infection. As treatment occurred, my tubing slipped and I needed another surgery which resulted in my Endoscopic Third Ventriculostomy (ETV). As a result of these surgeries I was unable to complete the semester which lengthened my graduate schooling by one year and I was unable to go on a planned Finland trip. I relied on my support system to help me go back to school. On the bright side of things, I developed new friendships, remained connected to my old friends, and went to Finland only a year later. It took strength, support and perseverance, but I finally received my Master’s Degree in Social Work!

College or graduate school is what you make of it. A wise person once told me “Nobody will ever ask you how many years it took you to graduate. It only matters that you did.” That helped keep me focused during setbacks. I have an undergraduate and a graduate degree and it is true, nobody asks me how long it took me to receive my degrees – it only matters that I have them!

Resources:

Perseverance: The Ability to Keep Going In The Face of Adversity

Know Your Rights: Leave of Absence Policies

About the Author:
Caitlin is a 34-year-old Social Worker from Massachusetts. She was diagnosed with hydrocephalus at 6 months old and has endured 48 hydrocephalus-related surgeries throughout her life. She is a frequent blogger for the Hydrocephalus Association, a peer volunteer, and serves on the Hydrocephalus Association Scholarship Committee.