Two good reasons to see Five Feet Apart

We went to the late show on a Thursday at Chapel Hill’s most deluxe theater. Not crowded, so no concerns about sitting too close to other moviegoers. No need to mask up (just for a photo opp!). From the first moments of the film, Av and I were transported. A compelling cast of actors had us hooked. The familiar hospital world captivated us. The slow-burning tender-love-and-care under the most difficult of circumstances touched us. Look, we’re partial. But I’m sufficiently convinced Five Feet Apart is a tribute, not a transgression. Skip the book and see the movie for:

  1. A snapshot of the treatment burden in cystic fibrosis (cf). The movie treats us to instructive, technicolor scenes of how most people with cf must care for themselves everyday. The depiction reflects not only inpatient lives but home lives of so many real cf fighters. Av and I are familiar, if not intimate, with those carts of pill bottles, treatment schedules, nebulizers, airway clearance, calories galore, feeding tubes, coughing, spitting up globs of mucus, shortness of breath, research trials, long-term IVs, surgery, scars, oxygen. Frankly, I’m fascinated by the notion of cf care as a central feature in a major motion picture. While the movie is no documentary, it’s more technical than your average flick. And as we easily anticipated every twist of the neb cup and rhythm of the regimen, we also realized this stuff might not intrigue everyone. Case in point: a pair of girls sitting near us in the theater who seemed way more interested in the texts on their phones than in the medical minutia of cf.
  2. A glimpse of the emotional toll cf takes. The movie weaves throughout its story the central characters’ reckoning with their own mortality. Seems unreal, right, to think seventeen-year-olds must grapple with what it will be like to die; how little time they’ve got left; or how to cope with survivor’s guilt. Sadly, for so many cf fighters, this is a part of life. Add on more layers for cf’s thievery of freedoms, which most healthy people take for granted: the freedom to leave (the hospital), to love (the one you cannot be with), and to live as fully you desire. This film gives us a striking portrayal of the sadness and anxiousness behind such tremendous sacrifices. I was deeply moved by it; anyone with a pulse will leave the theater counting their blessings.

Av’s and my final recommendation: watch Five Feet Apart. Learn it, feel it, and join in the conversation.

Common Cold

Not runny
Not drippy
Not sneezy
Just pressure bout to explode my head

All I want to do is

Saw through the top of my skull
Tilt open
Start scooping the goop
Just scoop and scoop and
Remove all the goop with an ice cream scoop
Into the bowl

And next I need a

Butter knife
To sliver off polyps
Like butta
One and five and ten and
Plop go those nuisances
Into the bowl

Not finished

Slice straight down the middle of my nose
Open up wide like a door
Drill precise little holes in left cheek
Holes on right
Use a straw to
Suction and slurp and
Squirt the gunk
Into the bowl

Pour and coat and
Coat and pour the cement
So smooth so
Polyps don’t grow up-in-here no more

This is an old-school
Cf freestyle
Dee out

Appearances Can Be Deceiving

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.