I met my future wife after I forgot what it was like to be sick. She knew me for a few years before we started dating and she knew that I had hydrocephalus, but she didn’t know anything about it and, honestly, I didn’t know much either.
What I did know is that I have trouble remembering things and that I get a little confused over simple things from time to time. Also that my body is riddled with scars and that, because of the mental issues I experience, I don’t drive. I knew that I have been through more pain in a day than a lot of people are fortunate to not experience in a lifetime.
She learned all of these things early in our relationship and it wasn’t easy for her to understand, but she stuck by my side through it all. However, what happened early in our relationship would be the true test. I had my first shunt malfunction in about eighteen years, and it did not go well. I remember a few of the now seventeen shunt revisions and I remember the pain, but what I do not remember is the look and emotions on the faces of my family members.
Well, this time I was able to witness and understand it as an adult and my fiancée handled it like the true angel that she is. Only nine months into our relationship I entered an operating room screaming at the top of my lungs, begging to be fixed. As I lay in the bed, I yelled at her telling her to leave my room because I didn’t want her to see me like this. I don’t remember much else from that moment, but I know she was there when I woke up from surgery.
What came after is the pain I still experience over two years later. The doctor was not able to remove the old shunt completely and a portion of it still rests inside my neck. It hurts daily and, from what I’m told, nothing can be done. Much like this old, stubborn shunt that isn’t going anywhere, neither is she. When I’m having a bad day, she knows and makes my day as easy as possible. She hates to see me in pain.
She also loves to travel. Her brother is an airline pilot so flying is something that she doesn’t fear and enjoys doing. Flying is something that she’s done with her brother before she met me and something that I simply do not like to do. I flew for the first and last time to get to and from vacation. But like many others who have hydrocephalus, I was miserable. I was blindsided by a terrible headache and there was nothing I could do about it. Through those flight she held my hand and looked into my eyes and reminded me that after this, I never have to fly again.
The biggest reason I’m telling you this story is because throughout my years of dating, before I met the love of my life, I didn’t know if anyone out there would be able to handle the memory problems, the confusion, the inability to drive and the scars. I’ve forgot her birthday, not on the day but throughout the year I’ve had to ask for a reminder. She’s held the weight of making sure I get to where I need to be. She stays grounded to get to and from vacation so I do not have to be in pain. The list goes on and on.
Many of you might be out there wondering if you’ll ever find the one for you. The one who will accept you for what hydrocephalus has done and I’m here to tell you that you will. He or she will not just be your future husband or wife but they will be your rock, your memory, the one who straightens out your moments of confusion. But most importantly, they will be the one who reminds you that the pain will end soon and that you will be back to your old self once the surgery is over.
Hydrocephalus may be the reason for your scars and many other noticeable problems but it will never be the reason that you’re not loved. Either by that one special person or by your family and friends. So when that headache comes along or you notice those scars in the mirror, never forget that you’re loved and you will be loved through those headaches and regardless of those scars.