Glass surrounds me
From unseen forces
Still I wait
Wanting to be
On the outside
(Excerpt from my journal)
Growing up, I thought my mom only used one word to answer my questions—No! No, Joy, you can’t go to camp; you might catch pseudomonas. No, Joy, you can’t stay overnight at Lexis’s house; her mom might forget to give you your medicine. No, Joy, I don’t think you should go to school today because the flu’s going around.
After coughing, Joy felt rather than saw her mom’s piercing blue eyes looking in her direction.
“Isn’t it time for your treatments, honey?” my mom inquired.
“I really wanted to read the last chapter of the book we’re reading for English class, but I know you’re right as usual,” Joy wheezed out.
I slipped on my nebulizer mask and inhaled the hypertonic saline solutions. Then, I turned on the high frequency chest oscillator (HFCWO) vest that broke up the excess mucus in my lungs. I sat down on my bed and listened as the words from Laura Story’s song poured out from the speakers: “What if your blessings come through raindrops ... healing comes through tears.”
I decided to turn in early, so I would be able to get up for my 5:00 A.M. routine. When my alarm went off, I roused myself out of bed, took the vast amount of pills and enzymes prescribed to me, ate breakfast, and performed another round of therapy. I threw on a pair of shorts and a t-shirt for my jog. My CF doctor had recommended the benefits of exercise for my overall health and well-being. That was the one concession that my overprotective parents had made even if it still worried them every time I stepped out the door. Running was the one time I felt normal. The warm breeze blew through my hair, as my legs carried me, one step at a time, through the small sleepy town. Please Lord, help me find a friend I can talk to; I prayed.
Everything had gone fine that day in school until after lunch when another student noticed me doubled over in excruciating pain and coughing uncontrollably. My English teacher, Mrs. Wentworth, saw my distress and immediately called 911. The paramedics made their way to me, lifted me unto the gurney, and rolled me into the awaiting ambulance. On the way to the hospital, all I could see were the pitying looks of the other students who had previously labeled me as either a geek or a freak.
My mom met me at the hospital. We waited for the results of the blood tests and abdominal ultrasound. By that time, the ER doctor had instructed the nurse to administer pain medication in my I.V., so I drifted in and out of consciousness for most of the time.
Finally, a Dr. Roesler walked into the ER room and gave us the results. “Young lady, it seems that you have developed a small gallstone. We are going to admit you to the hospital for a couple of days, so that we can administer medication to dissolve the stone and high doses of antibiotics to keep infection at bay.”
The truth is that I hate hospitals. I’ve been in and out of them more times than I can count. When I got to my room, the CNA put me in bed and helped me straighten out the cords running to the I.V pole. I looked over and saw my new roommate. Her long blonde hair was pulled back in a ponytail and she looked to be about my age, 14.
“Hi, my name is Shawna. I’ve got leukemia, but I’m not going to let it stop me. The disease is part of me, but it is not going to define me. Now that I’ve got that out of the way; I think we’ll be great friends.” Then, she laughed and sent an elastic hair band in my direction.
Since my parents had sheltered me from the truth of my illness, I had never met anyone so honest and blunt. “Well, my name is Joy, and I have cystic fibrosis (CF). I’m a runner who has been running away from her illness her whole life, but now that I’ve met you I believe I’ll be breathing a little easier tonight.”
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