My Story

Most people take the things they can do for granted. Things like walk unassisted, play sports, take long walks on the beach holding a lover’s hand.  

When I was born, I had a nice little birth defect called “Spina Bifida Occulta” which is one of the rarest forms of a very rare birth defect. Most babies born with this suffer no complications - ever. I wasn’t so lucky.

When I was three-weeks-old I had an extremely complicated surgery performed on my spinal cord that granted me thirteen years of near-perfect function. The only noticeable effects were my inability to move my toes and, every once in a while, I shit my pants.

You heard me.

Take how awkward your pubescent years were, and add to it the fear that at any time, at any place, you could have a bowel movement without warning. That makes for one antisocial thirteen-year-old. But wait, it gets better.

The summer of my thirteenth year of life, I began walking with a slight limp. After a while, it got so annoying that we went to a doctor. They diagnosed me with patellar tendinitis.

So I took medications and used crutches for three weeks. It didn’t get any better. Fearing the worst, we went to visit my neurologist. He told me I had to have this extremely complex surgery once again, and if I didn’t, I would gradually lose control of everything below the belly-button.

Quite some news for a thirteen-year-old. When most people were getting body hair and worrying about getting to first base, I was having major spinal surgery.

I had the surgery, and was in the hospital for three weeks. Have you had a Foley catheter? I pray you never have to. Have you ever been completely at the mercy of several people you’ve never met? I hope you never have to be.

I finally got out, and went home. Thus began the recovery period. Picture middle school gym class with your drill-sergeant wanna-be gym teacher. Multiply that by ten, and you have physical therapy down. I had physical therapy three times a week. The only reason I didn’t give up and accept the wheelchair is because I knew I would eventually hate myself for it and because there was no way in hell my mother was going to let me throw that away. God bless that woman, for putting up with me through that. I was a mean little shit. I was angry, and spiteful, and I hated to be pitied. Yet, that’s all people did.

Now I know what you’re thinking, “You haven’t been through shit! There are people out there who can’t - and never will be able to - wipe their own ass!”

Trust me, I know. That’s why I’m even more ashamed nowadays about my behavior back then.

Fast-forward six months - I’d made real progress in physical therapy. I’d gained some of my earlier abilities back. I could walk unassisted, though I opted to use double Leki trekking poles as canes. I was starting to get into the rhythm of things.

Then… I began getting worse again.

Exactly eight months after my second major spinal surgery, I had to have the same surgery done, yet again. This was the breaking point - I couldn’t take anymore. I gave up; I became comatose. Thank the Lord I didn’t have the balls to kill myself, because I seriously wanted to die. All I could think about were how those months of intensive physical therapy were for nothing. Still, I went through with the surgery and spent another three weeks in the hospital.

I started asking for more pain medication even though I couldn’t feel a thing. I really couldn’t have cared less. We got home, I got settled, and I started the recovery process. Again. Each time I had the surgery, there was a month of recovery at home before I could even think about leaving.

Four days after I got home, I was laying in my bed, playing some Assassin’s Creed, when my back started feeling unusually cold. I felt my incision (which still had forty-six staples) and felt wetness. I brought my hand around to see what it was. There was clear, odorless, thick liquid on my hand.

Have you seen spinal fluid before? Neither had I. Turns out if you have major spinal surgery twice in one year, your spinal column stops holding your cerebrospinal fluid in. Basically, I was spraying spinal fluid everywhere. Like, thumb-over-the-end-of-the-water-hose spray.

When you lose all of your spinal fluid, your brain sits on the bottom of your skull, giving you the world’s worst migraine. I’d rather have my junk run through the garbage disposal than go through that again. We went to the emergency room, and I had two more staples put in, bringing the grand total to forty-eight. Did I mention I was AWAKE?!

I spent all night woken up every fifteen minutes so they could ensure I didn’t go into shock. Finally, around nine in the morning, my neurologist told me I had to have surgery a FOURTH TIME! By this point, I’d given up hope; I didn’t much care what happened.

Long story short, I had surgery a fourth time, recovered, and went on with life.

Fast-forward to last summer.

I started having worse and worse accidents. I was having a harder time controlling my bladder and bowels (yup, still a problem, even at fifteen.)

I was terrified that I was going to have an accident at school, church, at the store, or at a concert - you name it. My mother and father began making me wear… wait for it…

…adult diapers.

That’s right.

For almost exactly one year, I wore diapers meant for someone sixty years older than me. You think you were insecure? Try fearing that at any moment, someone would find out that you wore ADULT FREAKING DIAPERS.

A little over a month ago, I switched back to regular underwear.

I haven’t had an accident since three months ago.

I’ve begun to change my outlook on life.

I no longer look in the mirror and see a mistake.

I have a girlfriend, who is the one of the most awesome people I have ever met, yet she knows very little of this story.

I’m not angry anymore, I’ve accepted my life, and I’m content to live as an example to others.

I tell you this not because I want your pity, because pity is worthless. I’m telling you this to show it’s not impossible to make it out. I’m telling you this so you can begin not to take things for granted, the small things. I sure as hell know I don’t anymore.

My name is Selby Stanley, and this is my story.