To the Girl Growing Up With Hydrocephalus
Dear Younger Self,
It’s true. It wasn’t fair that you were deprived of the chance of dancing at your kindergarten graduation concert, just because you didn’t know how to coordinate the steps in time to the music properly enough. That’s not your fault – kindergarten graduation is supposed to be a rite of passage signifying growing up; it’s not meant to make little girls cry for not being on stage with the rest of the class.
When they didn’t let you do it, you didn’t know at the time that it wasn’t your fault, it was hydrocephalus’s fault. Not yours. You deserve a hug – for trying so hard in vain to be good enough, when this congenital, incurable thing stood in the way throughout. To make things worse, none of the adults explained it to you in age-appropriate terms, and you’re still struggling with the backlash of that today, despite demystifying things for yourself since then.
It wasn’t your fault either that the adults were so mean, by saying that when you walked on tiptoe you were misbehaving. It wasn’t your fault when they scolded you for it, which made you afraid to talk to them – a fear whose remnants remain even today, though they’ve stopped commenting because you’re grown up now. You know, it isn’t your fault when they’re talking about you without letting you know what they’ve said. You deserve to know; they should be talking to you instead. As a result, part of you still remains in hiding after all these years, afraid to talk about it – it still feels like the unspeakable crime. But it’s not supposed to be that way, so the feelings of inadequacy and shame you’ve faced, for not being able to ask questions or express opinions about hydrocephalus, are completely valid.
They tried to fix you, claiming you’d walk properly after that. Obviously that didn’t work – hydrocephalus doesn’t currently have a cure. That doesn’t mean life-threatening or bad; it means those attempts were futile. That explains why the adults made three attempts, each time claiming the previous one wasn’t of highest success – until you were no longer a child and firmly decided against any more attempts. That was when you were 12, and it would take you more than 10 years to finally justify that it wasn’t merely out of rebellion or spite. For these years you spent feeling like a rebellious child – you were not. Even though you didn’t have the words to explain yourself because of the lack of courage in finding out more, you understood from experience that these “cures” didn’t work. That’s valid, too! You were brave even then, having to endure three operations by age 12. Yet in hindsight, you realize none of these should have happened.
That explains the relief you felt when you decided to take the plunge to find out more about hydrocephalus. You’d read about it where a stranger related her experience with hydrocephalus through a Facebook comment – you were astonished to realize it was a medical condition with documented statistics, not just the result of some perinatal fluke. Good job, girl, that was super brave – and it paid off!
But in spite of hydrocephalus, you stayed in physical education classes and insisted on working in the same academic conditions as your peers. You did quite well in school, too! Sure, you weren’t cream of the crop, but nonetheless you made it to a good secondary school, and even junior college, too. That’s pretty rad, I think. You also went on to become a full-fledged teacher, and even recently explained hydrocephalus to your kids in age-appropriate terms, and they understood sufficiently – props to you and them alike.
Yet, as a grown-up now, you’re still reeling from the echoes of those adult voices who have tried to fix you. You’re still struggling, wondering how you can be good enough for the authority figures in your life. It’s tiring sometimes, wondering what it will ever take for them to accept you – especially the family. You still struggle with decision-making, wondering if each decision you make is the “right” one that earns the parents’ approval.
But there is light – and you know that when you are given love and light, you can and will blossom. You know the difference the community at church has made, and how that has managed to restore some semblance of your self-esteem. Cling onto that for the moment, even as it is often a struggle to believe there are people who value you so dearly and make such deliberate effort to press on in loving you.
For everything else I wish to tell you but lack the adequate vocabulary to express – just know you deserve all the hugs you wish you received when you were growing up. Now that you’ve grown up, I know it’s really scary – but promise me to step out of your comfort zone whenever you can.
After all, you’d never know when that might bring you on some new adventure – like getting this published, for instance.
All my love,
Older Self x
The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to email@example.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.