cloudy days

Know that this is lengthy (I’m going to break it down into sections), explicit (descriptive – adult topics) and if you have CF or know someone who does, you will probably be somewhat enraged by the time you finish.  BUT, it is what it is and if you look deep into the story, you will see, I am a real person giving you my real story.  Your thoughts, opinions and feelings are welcome.  I didn’t make it this far to keep this story to myself.  Consider it educational.  This is the story of my cloudy days, when my mental stability was clouded by life sentences, inability to make my own choices, the “rules” of living with Cystic Fibrosis and just trying to be “normal.”

So often I remember times in my life that I was making rash decisions, living on the edge and participating in nonsense on the road to a quick death.  I have accepted those moments as lacks in judgement based on deeper issues.  Healing those deeper issues (still working on them) are what eventually guided me to sunshiny days and the positive path I am on now. 

School, church, dance, tumbling, piano, dentist, doctor and a few other events jumbled in there including vacation, camp, playing in the yard, and family gatherings made up my basic childhood lifestyle.  All in all, my youth was fun filled, adventurous, ever changing, and a wealth of education.  I was happy, energetic, smart and full of gusto on the outside.  My parents provided me with every opportunity to learn and grow alongside making sure my health was maintained.  On the darker side, I had challenges INSIDE.

THE EARLY YEARS.. 

At 7, I knew I was different than other kids, not just because I had CF and was adopted, but because my brain was ultimately plagued with vivid violent images you only see in horror movies.  I had nightmares that woke me SCREAMING more often then not and the fear was only comforted by my parents rocking me to sleep and a nightlight….till I was 10 or 11.  Even then, I would wake up moments after they put me in bed to sit up and stare into my room with wide eyes…PETRIFIED.  I was an insomniac, scared of the dark, and scared to sleep.  I did not know why, but I did know it wasn’t normal.

My challenge was to be NORMAL.  NORMAL in my eyes was the liberty to participate in any activity I wanted, eat what I wanted without pain and sleep without nightmares.  Although this didn’t appear to be a challenge to people looking in, my mind was suffering greatly and being normal was far from my reach.  

At 8 years old I started to experience situations that confirmed my inability to be NORMAL.  I was a Brownie, the level before a Girl Scout and was unable to take an overnight camping trip to my neighbors backyard!  Why?  I had physical therapy and medication to attend too.  I was heartbroken.  That was the quick end to my life as Brownie.  At 10, I attended my first year of Cystic Fibrosis Camp where I met other CFers, some very sick, some in great condition like myself.  All of us were taking many many pills (10 at every meal and 4-6 at snack time).  We stayed in cabins together and woke up to receive group physical therapy where we were all being pounded on, hacking up phlegm and spewing in to cups.  One night, a girl in her sleep was “gargling." We awoke to find her choking on blood.  At 12, I returned to my 3rd and final year at CF camp to find more of my friends had died over the last year.  I didn’t understand.  Traditional camp stopped because of a bacteria Burkholderia cepacia, which used to be known as Pseudomonas cepacia, that became a significant threat to CF patients and responsible for the death of otherwise healthy kids.  CF patients began to pass this bacteria and therefore we were no longer to hang out with each other for fear of cross contamination. This remains the same today.

JUNIOR HIGH CHANGES...

In the fall,  after the traumatic summer loosing friends to CF, I discussed the idea of stopping the pills with my best friend.  She was not so sure it was a good idea and pleaded with me to stay on path.  I decided to throw in the towel anyway and didn’t tell anyone.  The pills didn’t save my friends life so why should I take them? 

My mother spent 3hrs every Sunday evening separating my pills into cute little containers so I could easily grab and go.   When I got home from school the pills went into the back of my desk.  For 2 years I didn’t take pills except when forced to in front of my parents.  My desk drawers, dresser and closet became a stash of THOUSANDS of dollars of pills.  I continued to take my breathing treatments because there was no escaping them.  In that 2 years, no one noticed any changes.  Not my parents, the doctors or the testing.  I never really considered the thought of getting caught until I was forced to clean my room top to bottom.  My secret was revealed.  My parents were fuming while I just shrugged my shoulders.  Why should I take all these pills?  I’m fine.  I can do everything anyone else can do and more.  Look at me!  I never resumed the pills, except in the presence of my parents which was usually dinner time…although my friends, family and Dr.’s thought otherwise. 

ATHLETICS OR DIE….

I was a natural athlete with the stamina of a gazelle and never had a lung issue.  I started dance classes at 3 years of age and tumbling at 5.  I danced 5 days a week for 2-4 hours a day.  My activities took a turn upon entering high school.  I met the varsity wrestling captain and after an impressive fake match on the lawn, he suggested I try out for the team.  I did.  I made the team and started kicking guys ass on the wrestling mat.  My dancing career was at a stand still.  My mother was devastated.  Then the clouds began to move in.  I learned about alcohol.

HAVE A DRINK...

I was age 14 and in High school when I had my first drink.  The interesting thing is that no one in my immediate family drank.  Actually, there wasn’t any alcohol in our house but a single bottle of Everclear stashed in the cabinet.  That’s where my first drink came from.  After a frustrating conversation with my parents, a confused, lost and hurt child, I decided, I’D SHOW THEM and alcohol was my payback.  Alcohol was the party drug in my first two years of high school.  I drank often and a lot.  Vodka and Orange juice in a thermos was my choice.  I had a few girlfriends who I drank with but otherwise, no one knew of my habit forming.

High school was a serious challenge for me.  I hated it.  I had social issues because I was a female on the male wrestling team, I didn’t like to go to class, and I had family issues no one knew about.  I was kicked out of 2 classes as a freshman, suspended for fighting as a sophomore and kicked out of class again.  My dating life was a constant social conversation.  Alcohol was my escape.  I added smoking weed at 16 and found it calmed my anger and crazy thoughts.  Graduating was more than just a next step for me.  It was a release.  Notice, I didn’t mention CF.

That’s not to say CF was consistently present or that I was a failing student or member of my community.  I was seen regularly by my CF clinic and was a patient for numerous CF drug studies.  I was a volunteer at the local hospital as well as the food bank and was continually fundraising for CF.  I was an upstanding person in my community.  I had sinus problems and had surgery at 15.  I had continual bowel problems.   Although I knew I had this illness, I did not let it effect me.  At least not on the outside. 

Through my youth and high school, I was in a constant mental battle with myself.  Am I sick? Am I healthy?  Am I going to die today?  Tomorrow?  Will I make it to be 18? 21?  30?  What’s with all this medication?  Do I need these breathing treatments?  Why did my friends die and I’m still here?  How come they stopped CF camp?  That was the only place I was NORMAL.  Sure the Dr.’s and my parents offered answers, but I never believed ANYTHING they said.  I FELT fine and was AMAZING at everything I did, so why do they keep telling me I’m sick and my illness is going to kill me?  Sometimes the Dr would tell me I was doing great and they saw no reason why I wouldn’t live to be older…..but what was older?  As far as I knew 21 was my death sentence.  I was an insomniac by the age of 9.  I rarely slept, and when I did, my mind was nothing but BLOODY, HORROR, KILLING, VIOLENCE, DEATH and brutal pain.  I was an “angry child” with a temper adults feared.  I would yell and scream at my parents at the slightest issue.  I said some ruthless things to my parents even at 14 years of age.  My mind was a sess pool of negativity and it was shown in my words and actions.  All the mental madness, life challenges and death sentence created a powerful force in my head that I WAS GOING TO BE NORMAL, was going to live life AS I CHOOSE and I would live to be 30!!