The Devil You Know

My ileostomy take-down surgery was uneventful - besides the raw skin -  and I left the hospital after a week.  I went home to learn what a true joy having a synthetic rectum was.  Besides having diarrhea perpetually, having this new set up also caused nocturnal incontinence.  It’s a fancy medical term for crapping yourself while asleep.  It was like I was a baby again.  At first I thought (even though the doctor told me otherwise) that this would just be very temporary, not a year or two like they said.  I’d figure it out and conquer it before school started in a few weeks.  After all, I didn’t want anyone finding out at school.  There’s no way I could live that down.

But I was wrong and the surgeon was right.  School started a few weeks after I returned home from my butthole hook up surgery, and I was still incontinent at night.  I wasn’t having trouble during the day while I was awake.  The doctors told my mom that I’d probably leak in my underwear while awake for a year or two.  But I simply could not do that, so I willed myself to not let that happen.  It was a different story when I was asleep.  I had no control at all, as hard as I tried.  It was incredibly embarrassing and depressing.  There’s nothing that strips your confidence and spirit more than losing control over your body.  It seems like a basic human right to be able to hold your stool and put in a place it belongs.  It feels so dehumanizing when you can’t do that anymore. 

I wasn’t too keen to go back to school.  I wanted to stay home and be home schooled.  But I had to return, I had no choice and I knew things were not going to go well.  What would I do if I was invited to someone’s house for a sleepover?  And I certainly didn’t want to have anyone over to my house to sleep with me and find out my dirty secret.  The first day of school, I only used the toilet once.  My mother had talked to the school about letting me go to the bathroom whenever I needed.  But somehow, I thought my classmates would notice how often I used the toilet and figure out that I had a pooping problem.  So I held my bowels against all odds until I’d feel like I was going to explode.  Some days, I’d actually make myself nauseous holding it so long.  My mom kept telling me that I had to go several times while at school, but I was just so self-conscious.  And if I were in the toilet while another girl was, I was afraid to go because I made a lot of noise when I toileted.  The act of crapping when you have a small bowel pouch rectum and eternal diarrhea is not a silent one.  It sounds like an explosion going off to be quite frank.  It’s still something I am ashamed of, but then again, why should I be ashamed?  I didn’t ask to be born with this disease.

Things seemed alright at first when I returned to school.  I was playing with the girls I normally did.  They weren’t acting that different to me.  But as the weeks went on at school, things began to change.  Slowly and deliberately, the girls in my class began to isolate me from themselves.  I noticed their attitude changing around me.  They didn’t want to touch me, they didn’t want to play closely with me, and they didn’t want to include me in their conversations.  I knew what was happening right away.  I couldn’t do anything to stop it.  I tried hard to make them want to keep me in their circle of friends and see that I wasn’t a disease, that I was a nine year old girl like they were.  I tried to make them laugh and I tried to make them think I was fun and cool to be around, but it didn’t work.  I knew why they didn’t want to be around me.  They knew what was wrong with me.  They knew about my shit bag, they knew about my illness, and they knew about pooping my pants at night.

I was in a Girl Scout troupe with at least half of the fourth grade girls at my school.  Several of them had come to visit me in the hospital.  Before they came to the hospital, their mothers explained to them (from information my mom had given) why I had surgery and what was done surgically. They knew I had an ileostomy.  Great, just what I needed.  I was mad at my mother for telling them.  But what really made me mad is that in the fall of that school year after my surgery, one of my classmates had a sleepover birthday party and I was invited, along with all the other girl scouts.  I didn’t want to go because I knew I would have an accident.  I mean, I wanted to go and be with the other girls, but I knew what would happen.  My mom told me I really should go and that it would be ok, I could clean myself up discreetly.  I don’t think my mom really understood how degrading it was for me.

So I went to the sleepover and it was a nightmare.  I woke up in the middle of the night having had an accident.  Everybody else was asleep, so I cleaned myself up.  Back then, there were no “good nights” diapers for big kids.  All I had were chucks absorbent pads and they didn’t really work.  I was cleaned up and I had extra pants but my sleeping bag was a mess.  I had to try to clean it up.  After that, I went back to sleep, but I know in the morning that everyone saw and found out what had happened that night.  How could they not see that I clearly had soiled my sleeping bag? 

It was over.  The cat was out of the bag and I hated my mother for convincing me to go.  I wanted to be normal and fit in, but I couldn’t.  The kids knew my secret now and that’s when things started to change.  The isolation was slow and deliberate.  They wanted to make me suffer I guess.  But the girls in 4^th grade finished me off one day.  It was perhaps October and I was playing by myself on the black top, bouncing a ball around.  About fifteen girls got together and approached me where I was playing.  They said to me “you can play with us one more time and that’s it.  You can play with us today, or you can play with us tomorrow, but not both and that’s it.”  I remember looking at all of them with tears welling up in my eyes and I thought of the only thing that made me feel like I had any dignity and power.  I said “Well then, I don’t want to play with you either day.  I don’t want to play with you at all.”  One of the girls spoke up and said “Good, because we don’t want to see you again.”

And with that, they walked away.  I remember putting my back against the brick wall of the school building and sinking down low unto the ground, tears rolling down my face.  I sat there and said to myself “Nobody loves me anymore.”  I was sure my mom didn’t either.  I just felt like a burden to her and my family, and a plague to the rest of the world.  Nobody wanted to come near me.  And that’s when I started to hate myself and wish I had never been born.

The bullying became commonplace after that.  There were a few quiet and non-social girls not in clicks that would play with me some days, but for the most part, I played alone.  I could be on the swings and someone would yell over from another swing “Heather poops her pants.”  Some of the boys would make fun too.  But the girls were monsters.  They were repugnant.   What’s even worse than the mean things my classmates did to me - not one teacher, not one playground aid, and not one other student ever intervened to stop the abuse.  There were teacher aids on the playground always.  They saw those girls approach me and isolate me.  They saw me playing alone and they did nothing.  They ignored me.  I was invisible.  No other kids said “Hey, that’s really mean.  You made Heather cry.  That’s not nice.”  Nobody did anything.  And that’s the sad reality of bullying.  There’s always witnesses and they often do nothing.