Rereading, rethinking, this is some words I have written in the past. Perhaps some wisdom from my previous self I can gain, maybe not.

One day a friend of mine asked me if cystic fibrosis made me feel if I was the walking dead. Quite taken back, I said, “No.” What in the hell does that mean?

Cystic fibrosis embodies a very dark and disturbing connotation misunderstood quite frequently. The age that I am was at one time a fantasy, a dream. Living with a life threatening disease I find it quite difficult to trust reality, simply because today may not become tonight.

When I was young, I always wanted to look into the future, reach graduation, become an adult. To see wrinkles transform my face. To pull gray hairs from my head, which by-the-way I have tons of and REFUSE to dye it; the grays fit me.

But that is the unknown with CF. And before I could figure out the unknown I had to move beyond my depression, god-blessed anger, and get one foot out of the mud. Stop walking on the tightrope of life and pick, life or death. Being in the middle you are only surviving, no way to live. You are a gob of goo.

As a kid, all I knew was that I had thick saliva, spit, in my throat, belly, and lungs. I had medications and therapies and with the firm discipline “like God” I could live, maybe.

CF created pain. I felt pain to the touch, when my lungs bruised from coughing, or when I couldn’t go to the bathroom or when I went too much.

I feared having a bathroom problem at school so much that I never went the entire year of kindergarten. I am serious. I ran home and flew up the stairs where at home I was safe. The fear of people thinking I had a bathroom problem and then having one, crippled me. First grade I gave in, but the night before my first day of first grade, I prayed to God, palms together, “Please don’t have a bathroom problem at school, please. I will be the best child ever. I will do whatever want. Please don’t have me have a bathroom problem at school.” I never did, ever.

I feared death. I feared it when I didn’t even know that I feared it. The anger rumbled and it grew like a tree. I couldn’t express it right; I would cry for the wrong reasons, like my brother taking something from me, and then when it came to my appointments or doing treatments, I just sucked it under my breath, silent, grinning ever so slight.

Where were my parents? They were there. All day long my mom was home. Blinders on, scared as shit, taking care of their daughter that freaked people out. The routine: One treatment in the morning, aerosol (15-20 minutes) and then pounding treatment (11 positions, 2 minutes each, 3 minutes when I wasn’t doing so hot); twice a day. A third aerosol during my early years, maybe until I was 7 or 8 years old. Total: about 2 hours a day until I turned 18, give or take all the missulaneous minutes.

Medications beyond medications . . . 26 enzymes per meal, then some with snacks, 3-5 snacks a day. Vitamins, drugs, totally over a hundred pills a day for years, until my early teens at least. New technology came and it cut the number of enzymes in half.

Then the green enzymes. The only time I got sick at school was in second grade. I raised my hand, walked up to the front of the room as my teacher was sitting on a stool reading every so nicely to the class, and said “I think I am going to throw-up.” She said go to the back of the room and I ralphed like I had never ralphed before. Green, all green. There they were.

The teacher told the nurse, “I never seen a child throw-up so much.”

I slept in a tent. My grandparents gave me a waterbed. I went from the crib to a waterbed. I believe because the mist tent was the easiest to construct with a waterbed. Two wooden poles on either side of the bed. A medal pole that stood erect behind my bed and jutted out above me to make the peak of the tent. A sheet hung on each pole on the side, and a sheet above to create the final affect. Some sort of contraption that held a gallon of distilled water with a hose pumping it into my tent behind my bed. I slept with no dolls, and had a plastic pillow as it always got wet. I did that until 9 years old. Then, my doctor said I didn’t need to anymore. Maybe I was stable; maybe they felt the mist tent didn’t excede their expectations; honestly who the hell knows. Down came the tent and I finally had a normal looking bed.

Then, in the mix of excitement, fear presented. Will something get me? Without my protective cave I swear the girl in the picture, hanging on my wall with the flower patch field is looking at me. Is she looking at me? What do I do now?