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.

Welcome Back

The six weeks with my new friend the ileostomy moved past me as fast as the summer had.  My summer sucked to say the least.  It wasn’t one I would want to repeat.  The time came for me to go back to the hospital to have the ileostomy taken out.  That meant I would get to use my wonderful, new small intestine rectum.  I had no idea what to expect and I was pretty clueless about what it would be like and the number of issues it would create for me over my lifetime.  I didn’t have any anxiety about going back.  I just wanted to get it over with.  I was crossing my fingers that nothing stupid happened and that I would only be in the hospital for a week or less.

I didn’t have to endure the ridiculous colon cleansing preparation like I had in the past.  Now I was colon-less.  When you don’t have a colon, food moves through you very quickly.  The colon is like a shit storage house.  After your small bowel has sucked out all the nutrients from the food, it moves the waste to your large intestine, or colon, where it removes water (to recycle back into your blood stream) and allows the food waste to sit and rot and come out at the proscribed time.  This is the most efficient way for a mammal to operate.  But when your colon is gone, your poo can't have the water removed, it becomes very loose and as such, it comes out more often whether you like it or not. 

So, I didn’t have to starve for three days this time, instead it was only one day.  However, the medical staff decided to give me an enema through my ileostomy when I got to the hospital.  That was an interesting experience and it wasn’t that effective.  They must not have realized that the food I ate was usually completely gone from my body within six hours.  There was nothing to irrigate out.  This time in the hospital, I was taken upstairs to a different floor from the one I was on during my first stay.  I was relieved that I didn’t have to be there again.  There were too many bad memories there.  I would miss the nurses I loved downstairs, but I felt good about the new surroundings. 

The time came for my surgery and I wasn’t a bit scared when I went into the OR.  I knew how everything worked.  Just before taking me to the OR, the anesthesiologist came into my room and explained to me what he would be doing.  I stopped him and said “I know how it goes.  This isn’t my first time you know.”  I remember him looking at me thinking “you little smart ass.”  He pretty much ended his spiel at that point and got down to business.  My surgery wasn’t too long, just a few hours or less.  All they had to do was release my small bowel that had been sewn to the outside of my skin, pull it out a bit, cut the small bowel where the opening was and sew the two ends together.  Then they stuff the bowels back in the hole where the ostomy was and sew you back up.  Viola.  Done.

When I woke up, I wasn’t in much pain.  I was pleasantly surprised.  I had another NG tube, but it wouldn't hang around for long.  A few days later, my bowels started to move and it was time to start drinking and eating again.  Things were progressing well and I was a little nervous to see what it would be like when all the food I was beginning to eat made its maiden voyage through my jerry-rigged rectum. 

Well, I didn’t have to wait long for the shit to start hitting the fan, almost literally.  No sooner would I eat, the poo would be flowing.  My poor, new rectum.  It was just a small bowel pre-programmed to move things along to the colon, but now it had been given a big job it wasn’t cut out for.  It didn’t like it one bit.  It was working, but I wouldn’t say it was happy about it.  Very rapidly, the skin around my anus and on my bottom became broken down and raw.  Every time I had to go number 2, which was every few hours, I would dread it touching my bottom because it felt like acid burning my butt.  My surgeon ordered for some kind of diaper rash cream, but it didn’t do jack.  It was worthless.  After a day or two of my skin feeling like it was on fire when I toileted, our neighbor came to visit me and while he was visiting I was moaning about the pain coming from my raw behind.  She explained to him what happened to my skin from my excessive bowel movements and he said “Well, you need some bag balm.”  What was that?  He had grown up on a farm and his family always used bag balm for diaper rash, skin chaffing, and lots of other skin ailments.  It’s a salve that was made for use on the teats of a nursing cow, as their utters often become extremely raw.  People figured out it works just as well on humans.

Our neighbor Fred was so kind that he left immediately and walked across the street to the pharmacy and got a jar of bag balm for me.  He returned in ten minutes with the miracle salve and within seconds I felt relief.  The bag balm was amazing and our neighbor had saved the day.  It meant so much to me that he had done this, just to help my little tush feel better.  It seems like such a small detail, but I have always remembered how kind and benevolent that simple gesture was.  A neighbor who I wasn’t even that close with saw me suffering, knew how to help, and acted on it.  There are so many wonderful and kind people all over the world who do the right thing without a second thought.  There are little things we can do every day to make someone’s life better, like something as simple as opening the door for someone just to be kind or sending something thoughtful to someone who is going through a really tough time.  Just letting people know you see them, you notice them, and you care about their feelings means so much to so many people.  But it’s not just them who feel your love, you yourself will feel the love too.

My surgeries to that point were awful for me, but there were several people – family friends, neighbors, and of course lots of nurses – who had gone out of their way to do something big or small to help me feel better.  Those people are real heroes to me.  In spite of all the negative things, the physical pain and the painful feelings that I went through that summer, what always stands out to me in my mind is the gestures of loving kindness, not the agony and despair of my disease.  As Virgil said, love conquers all.

Intermission

I had six weeks to enjoy having an ileostomy before I had my next surgery to remove it.  I explained earlier what an ileostomy is, but to rephrase it simply, an ileostomy is your small bowel brought to the outside of your abdominal area where your bowel waste then dumps into a receptacle that you can empty every three or four hours.  Having one of these takes a lot to get used to.  You have to apply a sticky backed flange to your skin around the ostomy site (the place where the small bowel comes out through your skin).  This sticky thing is called the appliance and the bag attaches to the round flange on the front of the appliance.

These can be tricky because the appliance can be finicky.  They often leak around the ostomy site or behind the appliance.  They have to be changed every three days or so and sometimes the actual bag itself leaks.  My skin was breaking down around my ostomy site, from the irritation of the appliance always being stuck to it.  I hated having to ask my mom to help me empty my poop bag.  It was a huge pain in the ass.

Things were settling down and I was sort-of returning to regular life.  I was eating lots and I had several trips out for ice cream and other special treats.  I was feeling stronger and gaining weight.  I also was wanting to play with friends.  One of my friends from school came over to play one day.  I made sure that I wouldn’t be emptying my bag while she was there, as I thought she might see it and tell all the other girls from school, and then they might make fun of it.  I wasn’t stupid.  Everything went fine during the play date but when my friend’s mother came to pick her up, she wanted to play again in a few days but this time at her house.  My mom said yes and thought it was a good idea. 

I thought it wasn’t such a good idea.  What if I needed to empty my bag there and I needed some help?  I’d have to get my friend’s mom to help me.  That would really embarrass me to have her help me.  I covered my bases and emptied the bag before my mom dropped me off.  But unfortunately, during the play date, it needed emptied.  I did some of it myself, but I needed help getting the clip of the bag back on so that the bag would be closed off.  I had to ask my friend’s mom to help me.  I stood behind the bathroom door and opened it up a crack to yell out to ask her to help me.  She came right away, but judging by the horrified look on her face when she saw the whole enchilada, I knew this was a big mistake.  She was not happy having to help me.  I could feel how disgusted she was.  She was clearly a fecal phobe, but she also was just judgmental.  The door was wide open and my friend was curious so she came in the bathroom too.  And if her mom was disgusted, what do you think her daughter thought too? 

I had no idea what would happen now when I went back to school.  This friend would probably blab her mouth to all the other girls.  I didn’t want anyone to know.  Besides, by the time school started, I wouldn’t have the bag anymore.  The play date was over soon and so was some of my agony.  But much more hurt and embarrassment would occur later when school started.  A few days later I asked my mom if the same friend could come over again.  My mother called the other mother but her daughter did not want to play.  I was heartbroken, but not surprised in a way.  I wanted to show her that I was still just me, that I wasn’t my bag, that I was still just the Heather that she was friends with.  But that’s not how nine year olds think.  She thought I was a freak and she probably didn’t want anything to do with me anymore. 

I was starting to realize a reality I had never even considered while I was in the hospital contemplating so many other things – that I could lose all my friends over this illness.  I had never thought about how people would treat me after the surgery.  I didn’t want anyone to know about the bag, because I knew they would think it was weird and funny, but I never thought about people not wanting to be friends with me anymore.  I had lost several things over the past three weeks but nothing would compare to how much I would lose and endure over the next few years because of my disease.  The aftershocks would be worse than the earthquake itself.    

The Three Weeks

A few days after my dreadful birthday, my bowels began to wake up and things starting moving forward, literally.  Like after my first surgery, my NG tube was pulled out and I could begin drinking again.  Things seemed to progress fine, so I began to eat again – first with popsicles, Jello and pudding and then finally solid food.  I was so used to living at the hospital that I wasn’t sure what it would be like going home again.  The only times I had been outside since I was admitted was to go up to the rooftop of the hospital to do some kids crafts.  But I didn’t always feel like going up there, it was hot outside and the roof was black and the worst place possible for a sick, starving kid to make macaroni necklaces. 

The daily blood draws of being stuck in my arms was going to come to an end.  I looked like a heroin addict with bruises and track marks down my forearms and hands.  I would get to say goodbye to the IV’s, at one point I had three of them.  The NG tube was gone too and it left me with a very bad ulceration on my nostril from the tube sitting on the skin of my nose for two weeks.  I realized the only thing I would miss at the hospital were the nurses.  So many of them had made me feel like I was still a human being and they had treated me with love and tenderness, especially on my birthday.  It would be hard to say goodbye to them.  They had become my security blanket while I was there and it would feel strange not having them around me anymore.  I had grown so used to them.

But the biggest thing I would lose when I left, I had already been losing the whole time – a large amount of body weight.  When I was admitted to the hospital for my surgery I weighed right around 60 pounds.  After not eating for three weeks (except after my first surgery, but it all came back up anyway), I had lost nearly 20 pounds and I was now just barely 40 pounds.  I looked skeletal and my bones stuck out everywhere much like the pictures of starving children with kwashiorkor’s syndrome from starvation.  I had wasted away fat and muscle.  I was weak and tired just from walking down the hallway.  It would take a lot of pigging out to get back the fat I had lost.

The day came when at last, I could finally leave that hell hole.  The nurses were so happy for me.  They gave me huge hugs and wished me well.  I would be seeing some of them again in six weeks when I would have to go back to the hospital to have my ileostomy taken down.  My surgeries weren’t over, but at least this hospital stay was.  The sunshine nearly blinded me when we made it outside.  It was so bright and hot.  I just hadn’t spent much time outside in the past three weeks and it was like my eyes and skin had forgotten what sunshine was.

When we got home, my sister had made me a “Welcome Home Heather” sign.  It meant something to me.  My family was happy to have me home finally and I was happy to be home, but in the back of my mind, all I could think about was that I would have to go back in six to eight weeks and I would have to deal with my poop bag all that time, which I was not excited about and I certainly hoped none of my friends would find out about it. 

When I look back on how horrible it was for me during that three weeks, the things I think of the most are my feelings of sadness, loneliness, despair, and the extreme hunger, not the physical pain.  I think of how punishing the experience felt and I can’t help but feel like I was in a Yom Kippur hell for three weeks.  Every year on the holiest day of the Jewish year, on the 10^th day of the first month of the spiritual New Year, Jews observe a solemn day of atonement and self-deprivation of food, drink, and all things that bring pleasure.  I feel like I endured Yom Kippur for three weeks.  Sometimes I feel like I should get a “pay it forward” pass of 21 years for time served those 21 days, thirty years ago.  But that’s not how Yom Kippur works.  And anyway, lots of other people unfortunately have a worse story than mine, for example anyone who lived through the holocaust and had to endure and somehow survive for years until they were freed.

I am always surprised at how many people aren’t able to make it through one holy day of fasting.  Maybe it’s because their life and health don’t depend on it.  I don’t know, but I do know that if they had no choice, they’d do it.  Everyone has to do what they have to, to survive.  As I’ve heard wise people say “God only gives you that which you can handle.”  I for one believe I can handle a lot because I grew up having no choice.  The more you go through it, the easier it gets and the tougher you become.  And remembering that there’s someone out there in a worse situation helps me to feel less sorry for myself.  I’m still here, I’m still kicking and screaming, and I’m still thriving but that’s not the story for a lot of other people.  It’s not the story for many of my relatives and ancestors who had this disease and it’s not the story for all the people dying waiting for an organ transplant, or the people hearing from their oncologist that there is nothing more to do – it’s time for hospice.  That isn’t me and I wake up every day and thank God for that.

Happy Un-birthday

If I wouldn’t have had the herniated bowel scenario, I would have gotten sprung from the hospital in plenty of time before my birthday.  But it didn’t happen like that and I was still in the hospital, my bowels had still not woken up yet from the trauma of two surgeries.  Once the day before my birthday came around, I knew for sure I was stuck there.  I was going to turn 9 in the hospital, and what’s worse, I couldn’t eat yet, so I couldn’t even have cake.  It was going to be the most un-birthday I could dream of. 

While I was sleeping at night, during the wee hours of my official birthday, one of the nurses who was kind and had pity on my situation decided it would be a lovely gesture to decorate a few things in my room to try to have some kind of celebration, to cheer me up.  I think my mom may have helped a bit, I don’t remember.  A few other nurses joined in to help too.  They took their color coding tape and stuck it around the water container they used to irrigate my NG tube with.  They made some banners and signs that said “Happy Birthday Heather” and hung them around my room.  They used the tape to decorate a few other things near my hospital bed, just to put some color into my room and make it feel a little more lively. 

When I woke up, I was surprised to see they had gone out of their way to make me feel special on my birthday.  It was a small gesture, but it was huge to me.  It lifted me up a little.  My mom had asked me the day before if I minded if she brought a cake in to “celebrate” my birthday and so I could blow out the candles.  I couldn’t eat the cake of course, but she wanted to know if it was ok to bring it for others to eat.  At this point, I didn’t care about much anymore, so I told her to knock herself out.  At some point that day, my parents, my sister, and some of my parent’s friends sang happy birthday to me and I’m pretty sure I blew out the candles.  I don’t remember making a wish.  I probably didn’t believe in wishes anymore.  All I had been doing was making wishes the whole time I was there and none of them came true.

The cake was cut and everyone in the room except me got their piece of cake.  I guess this is one of situations where you can’t have your cake and eat it too.  I would get really familiar with meaning of that figure of speech for years to come.  I made my mom pull the dividing curtain between my space and the space of the other half of the room where another patient would be staying had there been one.  Everyone sat on that side of the room and I heard them eating their cake.  I just watched TV as usual, and more food commercials came on of course.  This was turning out to be a swell birthday.

I don’t know if I got any presents.  I don’t remember.  They either weren’t remarkable, or I didn’t get any.  Who knows.  I guess it doesn’t really matter because I don’t think anything would have made me happy anyway.  This was the lowest point of my life and I really just didn’t even care about anything anymore anyway.  I was wasting away physically and mentally.  At this point, I was down in the 40’s in pounds and I basically had no will to live.  I wasn’t dying, but there were many times I wished I was.

I never thought about this day in my life very much until a few years ago when my daughter Bluma had her colectomy.  I will talk more in detail in later posts about my children’s surgeries and treatment for FAP, but I am thinking very particularly about how it felt for her to have to spend her birthday in the hospital.  Much like me, she was not supposed to be there on her birthday.  She had her colectomy and was only supposed to be in the hospital for about a week, but her small bowel twisted off where it was anastamosed (sewed) to her anus and the surgeon had to take her back into the OR to fix it which made her stay in the hospital two weeks.  She went home and was doing well for a few days until she developed a post-operative bowel obstruction.  She had to be readmitted and wouldn’t you know it, it was only three days before her birthday.  Her bowels had not straightened out by the time her birthday came and she was stuck in the hospital, just like me, and she couldn’t eat either.  We had to cancel her birthday party and Bluma was heartbroken and cried and cried.  It was déjà vu.  It just wasn’t fair. 

I went home for the first time ever during Bluma’s hospitalizations and brought her birthday presents to the hospital.  My thoughtful, amazingly generous, and loving friend Diahndra sprang into action to bring a balloon lady, decorations, and make your own teddy bears to the hospital so that Bluma would feel special on her birthday and have a party with friends to celebrate.  All the nurses that were working that day came into Bluma’s room, gave her a special birthday present, and sang happy birthday to her.  She was really sad, but everyone’s sweet gestures got a few smiles out of her.  I felt so lucky to have so many loving people around Bluma who cared about making her feel special, even if she didn’t feel happy. 

Many things come full circle.  I thought that day back then, my 9^th birthday, was the worst day ever in my life.  But now that I’m older, there have been worse days unfortunately, like the day my daughter turned 6 in the hospital and she couldn’t eat cake and was heartbroken to have her party canceled.  It made me realize that I wasn’t the only one suffering that day back in 1984.  My mom and dad were too.  I wasn’t alone in my grief.  I just felt like I was.

God is Dead

I was contemplating the existence of God after even the first surgery, when I was lying in bed all the time wallowing.  Between bad daytime TV and the food commercials, I had a lot of time to think about what this all was about.  In my eight year old brain, I was wondering what the hell I did that was so bad as to deserve this.  What did I do that was so bad and so wrong?  Kids at school would talk about reincarnation like “When I come back, in my next life I want to be a millionaire.”  Kids say crap like that all the time because they think life is that simple.  I knew about the idea of reincarnation and I wondered if it existed, what had I done in another life that was so bad that I was now being punished for it?  I just didn’t know where I had gone so wrong. 

I started to think about God.  What God would do this to someone who wasn’t a bad person?  I didn’t think I was that bad.  Sure, I didn’t always listen to my mom and I could be really obstinate with her.  But I didn’t think I was that bad.  My sister was just as bad and she didn’t need surgery and as far as we knew she didn’t have FAP.  Why was God so good to her if she was just as naughty as I with our parents? 

After the surgical complication and especially after talking to that annoying psychologist, who only managed to make me feel rage, I knew more than ever since this whole shit storm started that there just couldn’t be a God.  God was dead to me and God was stupid.  Why would I believe in someone who was so loving and benevolent, just to be forgotten and made to suffer for no reason whatsoever.  I truly believe that everyone either goes through something in their life where they get to the point of questioning God, or they should.  I think it’s normal to contemplate the meaning of religion and validity of it.  It’s a process, regardless of your conclusion, I think is necessary and extremely valuable. 

Today is Shabbat, the Jewish Sabbath and weekly day of observance and rest.  I was not raised Jewish.  I was raised Lutheran.  I truly believe that Lurtheranism gave me an invaluable platform to think, question, and contemplate God and religion.  I still feel connected to this sector of Christianity as I feel I owe it much thanks and respect for helping me to get through my disease, yet give me the building blocks to look for more.  I oscillated back and forth believing in God all throughout my childhood after beginning my treatment for FAP.  And the times I was an atheist wasn’t necessarily when times got rough for me personally.  Something bad might have happened in the world and I wondered where God could be.  By the time I was in high school, I unequivocally was an atheist.  I never wavered.  I was bullied, I was invisible, I was ugly, hacked apart, broken, and not whole.  How could God create someone as broken as me and then make me to suffer so? 

I continued on my atheist path throughout college, until I took a comparative religion course in college.  I thought Judaism might actually be kind of smart, and maybe, right.  Even the most famous Rabbis had the audacity to question God.  I liked that and I wanted to know more.  As I grew up, graduated from college, and got a very bad boy out of my life, I decided to learn some more about Judaism.  Through my own study, I decided some days I might believe in God, and later, that I wanted to actually be Jewish, if they could accept me into their clan. 

I was lucky to find Rabbi Gerson from Rodef Shalom and once I moved back to Denver from college, I connected with him and began attending services and formally started the conversion process.  I told him that I was a recovering atheist and that some days, I believed in God and some days I didn’t.  I was surprised when he told me that was ok and that whether they want to admit it or not, there just are days in everyone’s life where people think, even for a second, “there just can’t be a God.”  I realized that God is a lot of things.  God is in the people and God is changing all the time.  But regardless of how I feel about God on a given day, I have my religion, my traditions of Judaism, my holiday observances, and my community to keep me grounded and moving ahead.  Regardless of how bad I might feel some days about God or even when I’m feeling negative about something in the Jewish community, I always have the love and devotion of my religion to keep me safe and warm.

In my world, sometimes God is dead and sometimes God is alive, but regardless, I always feel alive and how I do that is by focusing on the Jewish connections and traditions that reeled me in 15 years ago and in my opinion, saved my life.

Genes are Stupid

The next few weeks would prove to be the lowest point of my life up to that point.  After having my herniated bowel issue fixed, I thought I’d get better quick and get the hell out of there.  But after having been eviscerated twice within ten days and having my bowels removed from my stomach cavity twice, they didn’t appreciate that and because of the damage my bowels had suffered, they were extra slow to start working again.  By this time, I had not eaten for almost two weeks.  Back then, there was no such thing as PPN, or peripheral parenteral nutrition.  PPN is a liquid nutrition that is administered through the peripheral veins, via an IV.  It’s used when a patient cannot put food in their bowels or stomach.  It is not a full replacement of daily calories, but it’s close enough to keep a patient from losing a large amount of weight.  Today, they give patient PPN after being NPA for about five to seven days.  Doctors have discovered that when the body starves and wastes, it impedes its ability to heal, which weakens the immune system.  It’s not good for the body’s healing process to be starving. 

At this point, I had lost probably 10 pounds, which is a lot for an eight year old.  The only thing I could do was lay in bed and watch TV.  Then, there was no cable TV at the hospital and there were no VCR’s, DVD's, or instant video.  You had to watch what was on TV.  I watched cartoons in the morning, game shows later, and then the soap opera’s started mid-day.  I was bored by them, but they had a story line and it was a valid distraction.  But the commercials were the worst.  Probably 90% of them were food based commercials – McDonalds, Taco Bell, cookies, crackers, TV dinners, Hamburger Helper, the list goes on and on.  The food, even some of it I didn’t even like, looked so good.  Even though my bowels weren’t moving and hungry, my brain was still hungry.  The worst part about the commercials is the detail and close-ups of the food.  They would show people eating it and having this satisfied look on their face.  If they had any idea how much it hurt to have to watch, being a person who was starving and dying to eat, but not able to.

Then there was the people visiting me, like my sister, who had to eat.  Before the second surgery, I didn’t care if people ate in front of me, because it wasn’t that bad at that point.  But now that it had been nearly two weeks, I was getting really pissed off.  I was tired of smelling visitor’s food, or even the cafeteria food waiting in the hallway for other more fortunate patients.  I finally had it one day and I snapped at my mom to tell everyone who felt the urge to eat in my room in front of me to beat it and go stuff their face elsewhere.  It felt good to get that out at the time, but I was still pissed as hell at life in general.

I was undergoing a transformation.  I was becoming a very angry child.  I hated life and living and I hated my mom and a lot of people, including doctors and some of the nurses.  But nothing got my fury more than a dimwitted child psychologist.  The doctors saw that I was wallowing and in despair, so they sent a student psychologist from the university to shrink my head.  The student was probably in his early to mid-twenties and he was one of these ignorantly blissful kind of people.  His job was to listen to me, but he did a lot of talking instead.  He asked me how I felt and I told him I hated the hospital, I hated the doctors, and most of all, I hated my mom for giving me this shitty disease.  I was only eight.  That’s how I felt.  He went on to ask me “Do you know what genes are.”  I thought he meant jeans, like blue jeans.  Again, I was eight, almost nine in a few days.  “Yeah, I know what jeans are.  You wear them.  Who cares about that.”  He smiled and explained to me in detail what genes and DNA were and how genetic diseases are inherited.  He told me my mom didn’t mean to give me her genetic disease.  I said “Genes are stupid and I don’t really care how they work.  I know my mom didn’t mean to give it to me, but I’m still mad at her.”  What he was too naïve to understand is that no matter how much you abstractly understand how the disease works, it doesn’t help you to feel any better about having the disease.  You still are angry that it happened to you.  What he should have done is sat there, listened, and then brought my mom in the room so I could tell her how angry I was.  He should have let me unload the anger from my shoulders and let my mom have it. It would have helped my eight year old brain feel some sense of justice.

Some things in life never have justice or resolve.  You just have to accept them and there is no answer and nothing will every make it acceptable to you.  You just have to find a way within to move on with your life and not look back anymore.  I was far from that point.  I was a child and I had no wisdom yet.  I would have to live through a lot for many  more years until I would start to find nuggets of peace and wellbeing from my suffering.

Blur

I don’t remember much about the few days following my first surgery.  I slept a lot and was in pain.  I was only allowed to have pain medicine a few times a day and for some ridiculous reason, they wouldn’t put the medication in my IV.  They insisted on giving it to me Sub-Cue, in the fatty part of my thigh.  It was an unnecessary needle stick.  Back then, I believe they thought it was bad for kids to be on morphine.  They thought it would be better if the drug weren’t directly put in a child’s veins.  Today, they happily administer pain meds to children IV.  It’s so much more benevolent this way.  Soon I wouldn’t have much sub-cutaneous fat to inject pain meds into.  I was still, NPO, nothing by mouth.

Four or five days after my surgery, my Girl Scout troupe came to visit me at the hospital.  They all looked horrified.  I welcomed their visit as I hadn’t seen much of anyone.  My parents and sister were there, and now my mom was sleeping at the hospital at night, but none of my friends had come to visit.  Some neighbors and friends of my parents would come by, but I wanted to know my friends cared about me.  About five minutes after some of the kids from my Scout troupe came for a visit, the girls became bored and hated being in my room.  I can’t really blame them, but I wish their parents would have thought about what it was like for me and had mercy.  Instead, at the insistence of many of the girls, the moms left with their kids ten minutes after arriving to take the girls to see all the newborn babies at the mother and baby unit.  Back then, you could do that.  You didn’t need a secret code and a background check to get onto the baby floor.  Babies were a lot more fun to look at then a withered up 8 year old with a tube sucking green liquid out of her stomach.  I shouldn’t have been hurt by it, but I was.

Things seemed to be healing and moving along.  The surgeon thought I was progressing well and on schedule, and after a week of not eating, he thought it was time to remove my nasogastric tube – a tube inserted during surgery through one of your nostrils and down your throat to your stomach.  The tube is hooked up to a suction device that removes bile, “bowel sweat”, and gases from your stomach so that it doesn’t get digested, irritate your bowels that are shocked from the bowel surgery, and allow them to heal and start moving again normally.  My NG tube was pulled out.  Believe me, this is one of the strangest feelings you can feel.  It’s like the reverse of sucking snot back in, but at the same time you’re feeling stuff being pulled out your nose, it feels like your stomach is attached to the end of the tube and it’s being ripped out with the tube, all through your nose.  The nurse simply removes the tape holding it nice and tight to your skin and counts to three and then pulls the whole foot or so of tubing out of your nose.  As it’s being pulled out, you can see all the gut juice stuck to the sides of the tube, and you can taste that crap in your mouth too on its way out.  Just what you wanted to taste after not eating for a week.

So I got to drink clear liquids first.  I had sprite and it went down well.  It tasted so good.  By the next day, they were allowing me to have jello and popsicles and pudding.  That night for dinner-time, I was finally allowed to eat actual food.  I ordered some kind of meat and mashed potatoes and I enjoyed every bit of it.  It was rubber, over-salted hospital grade food, but food never tasted so good to me.  I was full after just a few bites from my stomach shrinking up to the size of a grape.  It seemed just fine at that point and the doctors thought I’d probably go home the next day or so if the food digested well.  I would get to leave after a ten day hospital stay.

But the next day brought an entirely different scenario.  Very early in the morning, I began to not feel so well.  I was having a lot of pain in my bowels and things were just not right.  As the morning went one, I began to feel really nauseous.  I finally threw up, and it was a load.  It was everything I had eaten the night before.  At first, the doctors thought it might just be the food, but things were not right.  Since the professionals weren’t sure what was going on, they said I could still drink liquids.  That turned out to be a bad idea.  I drank some Squirt and within 30 minutes, I was terribly nauseous and couldn’t keep it in any longer.  It was coming up quick so I threw my head over the side of the bed and puked all over the hospital floor.  It splattered everywhere, including on my dad’s pant leg.  To this day, I cannot drink Squirt, even if they still make it, even if my life depended on it. 

That day got worse.  As I was going downhill, a girl was admitted to the hospital and brought into my room since it was double occupancy and I was the only one in it.  It would have been fine, but this kid -she was about three years old - was bawling like you wouldn’t believe.  She wouldn’t stop.  She had ran behind her dad’s car as he was backing out of the drive way and he accidentally ran over her.  She was not seriously injured and had no broken bones surprisingly.  But she had to be admitted to the hospital overnight for observation.  This would prove to be my worst night at the hospital, partially due to her.  The girl actually had tire marks on her back from the car, I’m not kidding you.  I could see them when they were examining her.  The kid was hysterical and I was in bed sick as a dog, in agony, my bowels feeling like they were going to blow up.  The nurses were paging the doctors to find out what they should do next.  Finally, my dad took me into the hallway to get some peace and quiet from that screaming kid.  I could hardly walk to the bench in the hall, as I was doubled over with pain.  That’s as far as I could make it so I laid down on the bench in the fetal position.  My dad and mom had gone to find out what the hell was going on and to try to get that screaming kid out of my room.  I was overcome again with nausea and I threw up on the bench and the floor.  A nurse walked by right after as I was lying there and she half-smiled at me.  She didn’t see the vomit all over me, the bench, and the floor.  I couldn’t even talk to tell her I had thrown up all over, because I was in so much pain.  So I just laid there in agony and waited for my parents to come back.

A few minutes later they returned and surprise, I was going to go downstairs for some tests to try to figure out what was going on.  What kind of tests I thought?  I soon would find out that a genius resident thought that even though I couldn’t keep a Squirt down, I should be able to drink and hold down some nasty and chalky barium for an x-ray study that might show what was wrong with my guts.  I was taken downstairs in a wheelchair and swallowed that disgusting, foul tasting crap.  Almost immediately, I chucked it up.  The test wasn’t going to work, in spite of their hopefulness.  Finally, finally, Dr. Lilly was going to fix it.  He had no choice but to take me back into the OR, open me up, and see what was wrong.  As much as I didn’t want a surgery, I was just thankful I soon would be unconscious, thus not in pain and I was hopeful the problem would be fixed.  I woke up several hours later but I don’t remember any of that at all.  Apparently, my bowels had twisted themselves up – it’s called post-operative herniated bowel.  Because they were all twisted up, they couldn't digest food.  Everything seemed fine, until solid food got down to the section where my small intestine was kinked up.  The food could not pass, so it went the other way, back where it came in.  Herniated bowel is an uncommon surgical complication that usually occurs when the bowels are not put back inside one’s abdominal cavity carefully enough.  I’m not implying anything, but this was a teaching hospital and we can be fairly sure that a resident put my guts back in and quite simply, he wasn’t so careful.  Oops.

Although it had felt like each minute was an hour as I moaned and agonized in pain, the approximately 48 hours that had passed from the time I started feeling sick to the time I was wheeled into the OR are much like a blur to me now.  I don’t remember exactly what it felt like and I don’t remember how I got through it all.  It’s one of those times in your life where you feel like you’re hanging on by your fingernails and you feel like you’d almost do anything to end it. 

Waking up to a New World

My parents came to the hospital in the morning.  I was glad they were back.  I ended up falling asleep for a few hours after I helped the night shift nurse.  I was woken up in the morning to get an enema.  Wonderful, another one.  I was getting used to them, sadly.  There is nothing about the feeling one should ever get used to.  The day nurse informed me that my surgery was delayed, wonder of all wonders.  When are surgeons ever running on time?  I’d just have to worry and wonder and agonize a bit longer. 

Finally things were moving along and I was taken down to the surgery area.  While I was waiting to be taken into the operating room, an anesthesiologist blew up a latex glove like a balloon, tied it off, and drew a face on it.  I thought it was cool, but it didn’t really make me feel any better.  A surgical nurse took my stuffed animal and wrapped in in a plastic bag so that I could have it next to me, so it wouldn’t get any blood or other nasty stuff on it during my surgery.  Who knows if they really kept it there with me while I was under anesthesia?  It was time for me to go back to the operating room.  I don’t remember my parents saying good luck, good bye, we love you to me, but I know they did.  I just don’t remember it.  I think I was so anxious that I don’t remember. 

I was wheeled back on the gurney by the medical staff.  In the OR, which I had never seen, there were tons of weird machines and people dressed like there was a chemical spill clean-up going on.  The room was freezing!  Unless you’ve been in an OR before, there is nothing more bone chilling and hair raising then wheeling into that room.  They keep in unbelievably cold so the equipment is happy and doesn’t overheat.  The anesthesiologist got his drug mask ready.  He told me he’d put it over my face and I’d fall asleep quickly and not feel a thing.  The mask didn’t bother me, but the smell of the gas anesthesia was terrible.  It smelled like a mix of plastic and a brand new vinyl gym mat.  To this day, when I smell vinyl, especially gym mats or other industrial strength vinyl, I instantly think of the OR.  I didn’t want to breathe the gas in because it smelled so bad.  But I also didn’t want to not fall asleep and risk still being awake and cut open.  Of course the surgeon would never do that, but I was eight and I was petrified of not actually being asleep and them starting to hack away while still awake and aware.  The surgical nurse was talking to me as I began breathing in the gas.  She was talking to me about relaxing and going to the beach.  About 20 seconds after beginning to breathe the stuff in, her voice started to sound really weird and really low and in slow motion.  I was losing consciousness but I’ll never forget how strange she sounded for just a few seconds before I was knocked out.  It was pretty wild.

The next thing I knew, it was about eight hours later, and I was feeling someone push on stomach and mess around with a dressing on my belly.  A few seconds later, I became aware of my pain.  I felt like I had been run over by a truck and the skin of my stomach felt like it had been torn by a pack of wolves.  Deep within the innards of my guts, they ached and throbbed with the worst pain I had had in my life up to that point.  I heard the nurse talking to my mom and dad and she was showing them the newest addition to my body, my ileostomy.  During my surgery, my large intestine was completely removed.  Your rectum, the large cavernous area that holds your stool until you’re ready to get rid of it, is part of your colon.  If the doctor was to leave my rectum, I would still get colon cancer in it, so that had to go too.  How do you live without a rectum might you be thinking?  In the late 70’s a few really smart surgeons realized that if you took the end of the small intestine, the part that attaches to the large intestine, removed the large bowel and then looped the end of small intestine back onto itself, creating a “J” shape with the small bowel, this would create a “double-wide” section of small bowel that could act as a receptacle for crap – a new rectum.  The small bowel is sewn to itself to create the J-pouch rectum and then a hole is made in the bottom of that section and sewn to the patient’s anus.  Viola!  You now have a synthetic rectum that will never work as well as the real deal.  But, it’s better than dying of colon cancer.  That newly made small bowel rectum is very delicate and susceptible to infection.  If your poop is not diverted temporarily (usually about two months) so that it doesn’t go through your new crap catcher, the new rectum will become infected from all the poop.  So, how do they divert your stool from touching your beautiful new rectum?  They take a section of your small intestine half way down the length of it, cut a slit in it, and put it out through a hole they make in your abdominal wall.  This is called an ileostomy.  The small bowel now comes through your abdominal wall to the outside of your body on the side of your tummy area.  Everything you eat will go through your small intestine and now drain through the opening and into a bag that is attached to the stoma – the opening where your small bowel comes out of you abdominal wall.  Quite literally, your poop drains into a shit bag.  The bag has to be emptied every few hours and the part that attaches the bag to your skin around your stoma has to be replaced every few days.  It’s a lot of pampering and grooming of the shit bag and a lot of care to keep it clean, functioning, and happy.

So the nurse was showing my cool crap bag to my parents and I was writhing in pain.  I finally was able to speak after a minute or so and I said “I hurt.”  The nurse realized I was awake and called to get someone else to bring me some pain medicine.  I got it pretty quickly and this is when I realized how wonderful morphine is.  I was only eight, but I was certain that was the most pleasant-feeling thing anyone could ever give you.  I didn’t care about what happened to me for a little bit, and I didn’t notice the pain either.  My parents talked to me once I was feeling better from the drugs, but I don’t remember what they said to me.  They didn’t stay long.  The medical staff told them they couldn’t stay in the post-surgical intensive care area, but I wouldn’t be there long anyway.

After they left, I was high as a kite and not able to fall asleep just yet so I was just lying there listening to the world around me and enjoying my brief trip before the pain came back.  I am great at eves-dropping.  I’ve always enjoyed it and can’t help but hear what’s going on around me and be curious about what I’m seeing and hearing.  There was a boy about my age next to me who had also just had surgery.  The nurses taking care of him were talking to each other about how he had been climbing a tree at a park.  His parents weren’t watching him and he climbed very, very high.  He fell out of the tree, and sustained broken bones and some internal injuries from the fall.  He was delirious after his surgery, something people commonly do when they’ve been through a trauma injury, and he was pulling out tubes and IV’s attached to his body.  The nurses kept trying to calm him down, but he wasn’t with reality and they had to knock him out so he wouldn’t keep ripping things out.  I remember feeling happy I wasn’t doing that.  Oh how I’d get in trouble if I acted like that.  I remember thinking that kid must have been really crazy and really a bad kid.  Who climbs a tree that high anyway?  I didn’t realize then that some people really lose their minds when they are really sick in the hospital.  Not everyone can keep it together.  It doesn’t mean they are bad or crazy.  I had no idea that I would have a breaking point eventually.  I had no idea what I was in store for.  Things were going to get worse for me before they were going to get better.  But I didn’t know that.

You Never Know What to Expect

I had to go see Dr. Silverman, the one who diagnosed me with the disease.  We went to his office near the University and we met in his office.  I sat there with my mom and dad, and he explained the options I had for treatment.  I could wait until I was a little older to have my colectomy, but not too old as the polyps already were in the process of becoming cancer one day.  Or, I could do it sooner, like over the summer.  It was March or April now.  My mom thought I should decide.  I had heard most of what Dr. Silverman had said and he looked at me and asked me what I thought.  I thought I didn’t want to die.  I, like pretty much everyone, was afraid to die and the thought of having something that was waiting in my body to kill me one day was a terrible thing and I wanted it gone.  I didn’t really understand exactly what it involved, other than it was abdominal surgery.  There are a lot of details to that which one can never know.  It’s probably better this way.

So I told Dr. Silverman I wanted to get it over with.  My parents scheduled the evisceration for June, about three days after school ended for the year.  What a total downer.  My summer was being taken from me, all because of this ridiculous disease.  Losing my summer was only the first of many things FAP would cheat me out of.  As soon as school ended, I had to begin the colon cleansing preparation again.  Yes, again, I had to clean my bowels out and not eat for three days.  Crap is really dirty and full of bacteria.  If they cut you open to remove your large intestine and there is poop inside your bowels, it will spread all over your abdominal cavity, infect you with massive bacteria, and in a matter of hours, your body would become so infected, you most likely would die or suffer permanent complications if you survived.  So, I had to clean my tube of crap out.  Same thing – clear liquids, lots of enemas, etc.  But, I had to be admitted a day before my surgery so the medical staff could clean me out sufficiently and they wanted to pump me full of unnecessary antibiotics pre-surgery.  They don’t do this anymore.  Modern medicine and rational thinking has allowed doctors to discover that healthy people don’t need extra drugs in their body.  Their immune systems work fine if you leave it alone and let it do its thing.

My parents brought me to the hospital that morning to check in.  My stomach was growling and I was starving, but my consolation prize was beef broth.  A clerk took us up to my room.  In 1984, The University of Colorado Hospital had a pediatrics floor and luckily, a surgeon named Dr. Lilly was one of the only doctors in the West who was doing ileoanal anatamosis surgeries on children.  I’ll explain what that is later.  The Children’s wing at the University was as ugly as any other 1980’s hospital floor.  Back then, Children’s hospitals were not all tricked out with crazy colors and fun things to see and touch for the run of the mill ADHD kid.  They weren’t trying to make you feel comfortable and safe and at home.  They just got down to business and did what they did best - helping kids to heal and survive.  They didn’t sugar coat crap back then.  They gave it to you straight.  Things are different now.  They give you your drugs with a smile on their face and a gift from the prize box.  Yay, you’re so brave for getting a shot! 

I walked down this desolate hall of a hell hole.  Not only was it dated, drab, and ugly, but it just felt devoid of anything remotely happy.  A nurse greeted us at the main desk of the Children’s post-surgical floor.  She was cheerful and kind.  All the nurses there were.  They were the only thing pleasant in such an ugly place.  I was taken to my room.  It was a shared room, but for a few days, I was the only one in the room.  The bathroom was a shared bathroom with the hospital room next door.  I soon met the girl in the hospital room next door.  She was frequent flyer.  She was born with a congenital disease called Biliary Atresia.  It’s a defect where the bile ducts leading from your liver are narrowed.  This narrowing causes the bile to build up in the liver, which eventually destroys the liver.  The girl next door was about five and her liver was dying.  She was on the transplant list.  She had to be admitted to treat some of her symptoms from the bile build up.  She left before I did, but I’m sure she returned.  I don’t know what happened to her, if she was ever lucky enough to receive a transplant liver.  Chances are, back then, she probably died waiting. 

I was much more blessed and lucky then the patient next door.  I wasn’t going to die, but I sure felt like it was the end of the world.  I received an IV first.  I had one when I had my colonoscopy.  It was no big deal.  Of course I didn’t cry.  I was not a baby I thought.  The nurse gave me the orange antibiotic pill to get some unnecessary antibiotics in my system for the surgery the next day.  It was lunch time, but no lunch for me, unless you are counting broth as lunch.  I passed on the broth.  A few hours later, I became super nauseous and threw up a bunch of nasty, foamy, orange bile.  It looked like the pill I took and it tasted bitter as hell.  Nobody seemed to think that orange pill was the culprit.  At “dinner” time, I had to take another orange pill.  Again, a few hours later, I threw up again, even nastier and foamier orange bile.  Hello dumb asses I thought, “This medicine is evil and it’s making me sick.”  I told the nurse the pill was making me vomit.  She wasn’t sure.  Seriously, was she sure she went to nursing school, had a brain, and a pulse?  My mom got involved.  She told them not to give me the pill anymore.  I think they decided to listen to my mom because if there’s one thing you don’t do, that’s mess with a mom when their child’s wellbeing is at stake.

It was starting to get late.  The day nurse had left.  The night shift nurses were there.  My mom and dad needed to go home.  Really?  I never even thought about that little detail.  I hadn’t even considered it.  I had to stay in this shit hole alone?  I apparently had a really devastating look on my face because my mom said “You’re ok with me going home right?”  She said “I can stay if you want.  Do you want me to stay.”  I realized at that moment that my mom didn’t want to stay.  The fact that she even considered leaving me there, meant that she hadn’t considered she should stay.  I think she was quite surprised – I’m not sure what planet she was on – that I was so shocked to stay there alone.  I told her to go home with Dad.  I wanted to be brave.  I didn’t want to need her.  It had hurt me that she actually left it up to me to ask her to stay.  I was eight years old.  I should have had to ask or make the decision.  It should have just been a given.  But it wasn’t. 

That night I couldn’t sleep.  I was hungry and nervous and scared for the next day.  The night nurse came to check on me a few times.  Around 2am, she saw I wasn’t sleeping so she told me to come with her.  She saw I was sad and scared and lonely, so she took me with her to do her rounds checking on babies and toddlers who needed dressing changes, medications, and other care.  I helped her change a baby’s diaper who was on oxygen and had some kind of respiratory disease.  I helped her take vitals on other patients.  She really made me feel special and safe.  She kept my mind off of things and I felt helpful.  I realized how much sicker everyone else was.  It made me think strangely yet realistically how lucky I was to be in this situation and not the little girl next door with liver failure waiting to either live or die.  I thought I should stop feeling sorry for myself that I was without my mom and awaiting surgery for a stupid disease.  I could be dying, but I wasn’t.  I hadn’t had surgery yet, I would in a few hours, but I was already changing who I was.  I was already different from the day before.  I had learned something about the harsh reality of life.  Even at 8, it’s up to you to make the best of your life.  Nobody’s ever going to do that for you.