Living With Cystic Fibrosis: My Cough And My Mother

As a child, I was constantly plagued by a cough.  It was not a cough that resulted from a cold, or a cough that happened when something went down the wrong pipe in my throat.  It was a cough that the doctors told my parents was a result of my asthma or acid-reflux and it was cough that kept me up at night and it was a cough that caused people, everyone from strangers to peers, to look at me as if I was carrying some sort of communicable disease, and as a result, it was a cough that caused me to be deeply embarrassed.

Despite the embarrassment, the nights where I couldn’t sleep were the worst.  They were frustrating.  My cough would always do two things at night: it would keep me awake, and once I finally fell asleep, my cough would wake me up.  I was hiked up on so many different meds that it would be impossible to recall the names of all of them, but my favorite was the cough syrup with codeine.  I loved the taste of it, and I liked that it helped me sleep.  However, cough syrup with codeine isn’t something that was prescribed for daily use and there were times that my mom had to come up with natural remedies that suppressed my cough.  We would have a rule, that if I woke up in the middle of the night coughing, I would have to wait and try to fall asleep for thirty minutes before I woke up either her or my dad.  My dad worked a lot when I was growing up, so my mom usually got relegated to “Keith duty.”  Usually, after I tried to fall asleep for thirty minutes, I would go wake my mom up, and we would go to the downstairs bathroom and we would turn the shower to its hottest.  The downstairs bathroom was smaller than the rest in our home, so it was the fastest in creating a vapor that soothed both my throat and my lungs.  My mom and I would sit there, oftentimes with me on her lap crying and asking her to give me the cough syrup with codeine, for hours.

When we sat together on the bathroom floor of my downstairs bathroom, I never really thought about my health.  My only concern was falling asleep, and escaping my cough.  I never realized that I could potentially have grave health risks that were causing my cough.  It was only a cough after all, and a cough couldn’t kill you.

I can’t say I ever really thought about death much as a child, but I always used to ask my mother about what happens after death.  Until we were probably nine or ten, my parents used to allot 10-15 minutes of time to my brother, Craig, and me each night before bedtime.  Craig and I shared a bedroom and a bunk bed (he was on the top bunk, I was on the bottom), and every night, my parents would lay with us and tell us stories about their childhood all while scratching our backs.  My dad’s life has been very interesting, so I enjoyed listening to his stories about living in Arroyo Grande and dozens of other places throughout California, but I always liked asking my mom questions.  I never asked her about dying or about whether or not she was afraid our dog was going to die or if she was afraid that she was going to die or afraid that I was going to die.  I didn’t care about dying and I didn’t care about death; I cared about Heaven, and I cared about Heaven lasting forever.  I remember asking her, “Are you afraid of Heaven because it never ends?”  She would say that she wasn’t afraid of Heaven lasting forever because our whole family would be there together, even our dog Bogey.

There are moments throughout my life where one would think that I thought about death, like when my cough was properly diagnosed at the age of fourteen, or when I was deeply depressed during high school, sleeping every chance I got because I didn’t want to be awake because being awake meant I had to deal with all of the bullshit surrounding me.  But I didn’t think about death then.  It took me six years after my diagnosis of Cystic Fibrosis to finally think about death and what it meant to me and what it meant to my family.

I was seeing a new doctor in Washington Heights at The Gunnar Esiason Adult Cystic Fibrosis and Lung Program located within Columbia University’s Medical Center.  It was February of 2012 and it was cold and I was going to the doctor alone, which was new for me as my mom almost always went to the doctor with me while I lived California.  I was sitting in a room that I was too familiar with, even though I had never been in this one before.  It was the room that you got your vitals checked before the actual doctor saw you, and it was the room that CF kids got their lung functions tested in.  After my diagnosis, I was almost always around 100% of predicted for my lung function, but Victoria, the nurse, administered the test, and she asked me what my usual test results were.  I told her, and she looked at me somewhat distressed and she asked, “Are you sure?”

“I think so, I don’t really remember though,” I said, worried, and lying because I did remember.

She told me that I should always remember “my number” and that she was going to get the doctor.  After Victoria left to get Dr. Keating, I was alone and stuck in the 5 x 7, overly sterile room by myself.  “Had my lung function dropped 25% in a year?” I asked myself.  It was then, in the room, after I asked myself that question, that I thought about death.  I didn’t think about death because I was depressed or because I was suicidal, I thought about death because I was sick, and because I was 2,924 miles away from home and because I was 2,924 miles away from my mom.