Growing Up with Hydrocephalus: Finding My Own Timeline

By: Jenna Sanchez

Growing Up with Hydrocephalus: Dreams That Kept Changing

When I was four, I wanted to be a neurosurgeon. Over the years, that dream shifted—first to nurse practitioner, then speech pathologist, anesthesiologist, maybe even an OB-GYN.

But every time someone asked, “What do you want to be when you grow up?” something inside me felt off. I’d give an answer, because those were all things I truly would love to do. Yet part of me couldn’t picture getting older or imagine what living with hydrocephalus would look like as I aged.

Facing the Unknown with Hydrocephalus

I was told that hydrocephalus usually “calms down” in your twenties. As a child, that felt light-years away. And since I’d always been an outlier in the data, I wondered—could I even trust those statistics? What if this never really ends?

Now, in my twenties, I have a few more answers—though the questions keep changing. The number of shunt revisions I’ve needed has decreased, partly because I’m older and also have a different type of shunt. And no, it never truly ends. But that leaves me asking: What does this mean for me as a functioning adult? Where am I supposed to go from here?

When “You Can Do Anything” Isn’t That Simple

When we’re little, most of us hear, “You can do anything you set your mind to.” But what happens when your mind is set, but your body isn’t?

That question is often met with silence. People want to give an answer because they wish there was one. It’s painful to tell a child, “There are things you may not be able to do.”

I wish someone had sat me down and had a realistic conversation about what life with hydrocephalus would look like long-term. When you’re young, your parents want to protect you from anything scary or painful — and hydrocephalus is both. Procedures aren’t usually explained to the child going through them. It’s a difficult conversation to have. 

When you’re told the same encouraging messages as every other kid, but deep down you know you’re not like every other kid, there’s a disconnect. You don’t want pity; you just want people to acknowledge that difference and see you.

Redefining “On Time” While Living with Hydrocephalus

Personally, I’ve been pivoting for years. I thought I would have graduated on time, gone to college, and followed that familiar timeline we all grow up hearing: graduate high school by 18, earn a degree in four years, get a nine-to-five, and stay an active member of society.

That mindset is rigid—and a little ableist. Not all of us finish on this timeline.

In a good school year, I was absent for 60 days. It’s impossible to keep up when there are so many gaps in your education. So now I ask myself: What can I realistically do?

I’m still figuring that out. I’m 24. I finally finished my high school credits last year, and now I’m reapplying to colleges. It’s exciting, don’t get me wrong. I’m over a year out from my last surgery and am about to get my driver’s license.

And that’s when the “timeline” hits me. The shoulds flood in: I should have done this at 16. I should have graduated years ago. I should be further along by now. 

The shame and guilt creep in, and I get frustrated with my younger self for doing things “wrong.”

But it’s easy to forget what it was like to be that version of yourself—the one just trying to survive. It’s easy to compare yourself to the majority, but living with hydrocephalus means your path will always look a little different.

And that’s okay. It’s not the timeline that defines you—it’s the fact that you keep going.