Dark Side – Part 2


Yesterday I wrote about analyzing Kelly Clarkson’s song Dark Side and how it relates to my disease.  I wanted to really open up, but then I closed up and didn’t really put down in words what I wanted to say.  Yes, I felt a connection to the song but I didn’t really explain to well how I have that connection.  I never really said what I felt my dark side was.

This was going through my head and then last night I read a post in a Facebook group that I belong to.  I really made me think of one of my dark sides to the disease.  I got to thinking and actually shared my story that I have kept inside for a number of years now…and it felt good to get it out. 

The post was about how this person had to stop on the side of the road to “relieve herself”.  She felt ashamed to have to do this and I could see the pain in her words.  Now anyone with Crohn’s disease knows this is normal and probably most of us has at one time had real bowel emergencies and have done things they wouldn’t normally do.  I reassured the poster that what she did was normal for us and that she is just one of us.   Other people spoke up and she then commented that she felt better thanks to her family (meaning everyone posting).   Her pain made me think of my dark side story and I shared it with her.   I wasn’t worried about it getting out as it is a closed group and everyone keeps the stories there.  Now you are thinking I just told her story..but I am keeping all names out of this so as not to embarrass anyone. 

So, now I bet you are wondering…what was my story.  I thought about it long and hard and I didnt’ know if I was ready to let this one out into the general public.   But I guess I should take my own advice…we have all been there.  For any Crohnie reading this…I am sure you know just how I felt at the time.  For anyone without IBD reading this…just know, we all go through this problem.

First a little back story to mine.  What brought this on was someone saying they had to go to the bathroom on the side of the road because they had to go and there were no bathrooms around.  For many people this is easy to imagine.  I have been on interstates where there are nothing but trees lining the road for miles.  For me though, I grew up in NYC.  Every highway has numerous exits with plenty of bathrooms to go to.  The only time I would think about squatting on the side of the road is when there is an accident and the traffic isn’t moving.  But my time did come and I wasn’t on a highway or interstate.   I was walking.  It was early morning and nothing was open.  I was heading to my bus and then the “Urge” came on.  I knew I didn’t have time to turn around and go home.  If I did I would be really late to work.  The only building close by with a bathroom was the library..and it was closed.  I knew I was going to have an “accident”.  And then my mind raced.   Off to my right was a wooded area with a lot of trees.  I knew that if I went into the area, no one would probably see me.  I was feet from the sidewalk but being early morning, no one was around.  I had seconds to make a decision.  So I headed into the brush, squatted and did what I had to do.  Luckily I had my emergency toilet paper with me.  After I was done, I tried to cover it up as best I could, made sure the coast was clear, and continued on to my bus. 

I felt so ashamed of what I did.  I knew it wasn’t the worst thing as everything left behind was biodegradable.  Also, the creatures that luck around (racoons, squirrels, etc) do this everyday.  But I felt like this was not normal.  Yes cavemen used to do this, but we have plumbing now.  It stayed on my mind all day.  Over the years I would think back to that day and remember how low I felt.  It has always been my dirty little secret.  When I read the post last night, I thought of the story again and felt like it was time to get in off my chest. 

So now you know some of my secrets and part of my Dark Side.  It feels good and theraputic to tell the story and get it off my chest.  My main purpose for telling it though is to not help relieve my thoughts.  I made some peace with what I did long ago.  My real purpose is to help others with this damn disease.  It is to show them that we are all the same and have the same problems.  Like I have stated so many times before….you are not alone with your disease.  For all my Crohnie brother’s and sister’s, don’t ever be embarressed by your disease.  Most of what you go through is normal.  We have all been there at one point.

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Dark Side – What is Yours?


There’s a place that I know,it’s not pretty there and few have ever gone.  If i show it to you nowwill it make you run away, or will you stay even if it hurts.  Even if I try to push you out will you return?  And remind me who I really am. Please remind me who I really am 

Kelly Clarkson’s songs always seem very personal.  She reaches down into her soul to find lyrics and they come out as great songs.   From the first time I heard the song “Dark Side”  I was hooked on it.  I could hear the pain in her voice and can tell she had real emotions to this song. 
 
It wasn’t until I heard the song a couple of times that I started thinking about it.  I remember I was on the subway pulling into the Times Square stop when it hit me.  Kelly was talking about not having a boyfriend in the song, but that wasn’t my dark side.  My dark side, like so many other things in my life lately, had to do with my Crohn’s Disease.  I replayed the song on my Ipod and relistened to the words thinking about my dark side.
 
So much of my disease is kept inside me.  There is so much that I hide away from everyone.  No one in my life, not even my wife, truly knows every feeling I have when it comes to my disease.  Kelly’s words started to ring true to me.  If I tell all to my friends and family…will they just run away?  Or will they stay and remind me who I really am?
 
Of course that brings on more thoughts….who am I really?  Am I a person with a disease or am I a disease trying to live a life?  I think a lot of people with a chronic illness think and feel this.  Over time the disease starts to take over and forms our lives.  Eventually, we lose sight of who we are and tend to think of ourselves as our disease.  I personally like to think I am more than the disease.  I have a life, am married, and hold a job.  I have been lucky to not let my disease become my life.  For some though this isn’t true though.  I know when I was a teenager, I didn’t know what I was going to do with my life.  I thought, what can I do for a living when I constantly have to run to the bathroom?  No one knew of these thoughts though.  Back then my dark side started to form.  Over time, it grew bigger and bigger.
 
But….the song does continue…….
 
like a diamond from black dust, it’s hard to know what can become if you give up.  So don’t give up on me,  please remind me who I really am.

After a diagnosis, we don’t know what we will become…especially when we are diagnosed at a young age.  We think…can I live my life?  Will I have a life?  Will people like and love me?  Will I be able to work or go to school?  And usually, even when we get that diagnosis, we are still sick.  After saying those questions to ourselves we sometimes want to give up.  We are at our most vulnerable. 
 
I chose not to give up early on.  After battling my disease for a year I decided I was going to take hold of my life.  I wanted to go to college and get a job afterwards.  My family helped me make this decision and showed me who I really am.  I wanted to become a chef and they stood behind me.  They drove me to look at colleges.  They helped me with the applications.  They stood by me every step of the way.    For that I am very thankful. 
 
So, as I am sitting on my bus heading home…listening to the song a third time, I think about my dark side.  Since my diagnosis as a teenager, I have hidden a lot away.  So many feelings and emotions.  Thoughts and despair .  Some of them I have shown you on here.  Some I still hide away.  I don’t know if I will ever get all my feelings out, mainly I don’t know if I could ever really show that dark side of my life.  I do know, that what I have shown so far had done a lot for me and for some other people with IBD.  My thoughts have made myself and others stronger…but that is another song. 

Mood Music…What is Yours?


IBD, as with any chronic illness, can bring a person down.  Between the gut pain, joint pain, butt pain, etc. a person can get really depressed.  I know, I have been there.  So one way to get out of the funk I have found is to listen to music.  But not just any music.  It is what I call Mood Music.  This would be songs that help you relate to the world, songs that get you into a good mood.  Lately I have been listening to the same couple of songs on my computer.  I have been doing a lot of talking with fellow IBDers online and these songs keep popping into my head.  So I want to share a little of what has been getting me motivated and moving lately.  Be Warned…some of the songs are cheesy..but they help.

So here is a short list of the songs I am listening to right now and why I have chosen to listen to them.

1) Inside Job by Pearl Jam.  – This song was written by Mike McCready about his experience with Crohn’s Disease.  I love Pearl Jam but have never listened to this song before.  I never got into their late 90’s and 2000 songs.  I regret that now because this song is really good.

2) Call Me Maybe by Carly Rae Jepson – Ok, this is cheesy.  But I have been reading lately a lot about people with IBD and how hard it is to have a relationship.  This just reminds me of how hard it is just to meet someone when you are sick with a disease.

3) What Makes You Beautiful by One Direction – So many people feel ugly with Crohn’s and Colitis.  They have so much pain at times that they don’t want to beautify themselves.  Then when they look in the mirror all they see are the scars of the disease.  But everyone….EVERYONE is beautiful.  This song just is a reminder of that.

4) Beautiful by Christina Aguilera – This again plays into the previous message.  But really listen to the words.  This song is about believing you are beautiful no matter what anyone says.  This is showing your self-confidence, which all IBDers need.

5) What Doesn’t Kill You (Stronger) by Kelly Clarkson – This is just a powerful song that gets you up out of your chair and moving.  You are strong and can do anything.  These disease make us all stronger.  We live through the pain and depression.  We go through so much and that just makes us stronger.

 

So that is just a sampling of my music selection that I have been listening to lately.  I would love to hear some suggestions on what to add to that list.  I also would love to hear what other people are listening to.  Let me know.