I won’t forget a time, years back, when I recoiled at the notion my daughter would always be sick. We were at a routine cf clinic visit. After the doctor had seen her, one of the therapists waltzed into the exam room and greeted Av by saying sympathetically, “I hear you’re sick.” Geez, really. Did she have to use that word? I wished this person hadn’t planted a single seed of concern in my young gal’s psyche. Could she not see how very well she looked?
Granted, Av happened to be coping with a little extra cough that day. The doc was putting her on more antibiotics. But despite some pesky symtoms, she hadn’t slowed down a bit. She was keeping up with school and activities as usual. She wasn’t home in bed with a fever or something. She would take her medicine and be good as new within days. Sick? Av was not living life like a sick girl. I simply could not equate a little increase in cough with the state of her being sick. Also…denial ain’t just a river in Egypt. I guess even a cf mom is susceptible to falling down the invisible illness trap.
When both my daughters were about four years old, they were obsessed with reading a thin paperback storybook about The Berenstain Bears, which still remains dogeared on our bookshelf. You Berenstain fans may know the cubs (along with Papa Bear) always learn morals, and in this particular story, Mama teaches “that appearances can be deceiving.” She explains, “It’s just a grown-up way of saying that things aren’t always what they look like.” I admit, for me; as a grown-up, parent, and caregiver, all three; she makes a pretty ominous point pertaining to chronic illness. One of the most confounding aspects of cf is remembering that inside the beautiful facade, a war rages on. Some small battles are won from time to time, while others are lost forever to the triple threat we know as persistent infection, insidious inflammation, and permanent scarring.
What does sick with cystic fibrosis really look like? Sometimes sick shows its cards with its hallmark thunderous, juicy, body-quaking coughing fits, accompanied by globs of sticky mucus. At other times, sick is subtle, sneaky even. Sick is a breath a touch too crackly and constricted; a complexion a mite more translucent and sallow; a voice puffing from deeper within the windpipes. Sick is tired from snoring and waking up already fatigued. Sick is throbbing pain to the head, the tummy, and chest. Sick summons up anxieties about time. What time it is going to take her to fight yet another battle. What time she will lose to the chronic illness lurking inside.
Appearances can sure be deceiving. Cf fooled me once, but no more. While the battles continue to ravage lungs, pancreas, and sinus on the inside, if you happen to blink, you might think you’re only seeing a picture of health.