Hydrocephalus and Independence

By Madeleine Darowiche, HA Volunteer

So, you’re considering living on your own for the first time, but you have hydrocephalus and question if it’s possible? You’ve come to the right place. My name is Madeleine and I was diagnosed with hydrocephalus prior to birth. Within the past year, I have moved into what I like to call, “full-time adulting.” Full-time adulting included moving over seven hours away from home for my first full-time job as a college academic advisor.

With that, came living alone for the first time. Prior to this, in college, I always lived with roommates. Making the choice to live by myself was a personal one and something I wanted for quite some time, so I went for it. Granted, as most would, I certainly had my reservations, but for me, the positive aspects outweighed the negative. Living by myself was something I knew that I was ready for. If I didn’t feel fully confident and prepared that I could handle it, I don’t think I would have been as excited about it. Personally, hydrocephalus does not impact me physically, which is one of the reasons why I knew that I would be able to safely live solo.

Something I considered when determining the important factors of living alone was what would happen in the instance that an emergency occurred? Therefore, if you are in the process of choosing to relocate, identifying a neurosurgeon nearby is an important first step. Currently, I’m still looking for a neurosurgeon to get established with. I am lucky that I did not need to find one nearby right away. However, this is not the case for most.

I’ve always planned ahead, being future-centered is just my nature. I knew that having a copy of my most recent scans would be important, as well as keeping those scans in a place that I would remember where they are located. Being a hurricane in human form, I am notorious for misplacing things I need, so I knew that this had to be different. My health is something I did not want to mess with. Recent scans are crucial to have in case I did have a medical emergency. So, I keep the CD in a drawer that I do not move it from. A friend who I see often is aware of where that disc is and I have informed her of symptoms I may experience in the event of shunt failure. My mom has her contact information, and vice versa in the event that I cannot be reached because of an emergency. I currently do not drive so something I considered while finding a place to live was proximity to my workplace.

One thing I have loved about living independently is, as an introvert, after a long day at work where I am talking all day long, I am happy to just come home to a quiet space that’s just mine. Additionally, if you are concerned about the loneliness factor but still want to give living alone a chance, I recommend getting a pet if you are able to do so. My situation right now does not permit me to have pets who require more care, such as a dog or a cat, but shortly after I moved into my place, I did get a betta fish! Fun fact: his name is Dog! If you love dogs and cats like I do but can’t have one, I definitely recommend having a fish with a name like that. It can be a fun conversation starter too.

Living alone may not be the correct or wisest decision for everyone, but if you are thinking about it, and if it is safe for you to do so, I recommend at least trying it out! I have certainly enjoyed it to the fullest.

For resources on Transitioning to Independence, click here.

This page contains general information about hydrocephalus, as well as personal insight from the hydrocephalus community. It is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.