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.

Hole in Her Safety Nets

On the eve of her big journey to the Netherlands, according to plan, I was spreading on the dining room table all the contents to be packed into Av’s therapy backpack, when it hit me like a brick: the refill she needed of Orkambi had never shown up. It was already after hours on Friday evening! I had been expecting that medication on Thursday morning! Since overnight packages tended to be reliable, I previously checked off both mental and written packing lists. What could possible have happened between Thursday and Friday to cause me to overlook something as essential as a missing Orkambi delivery?

Oh.

Over the last 18 hours, I had single-handedly juggled the end of my first week in a new office, the kids’ early release for the start of spring break, an eighth grade conference, a kindergarten conference, a high school parent meeting, and a Thai dinner out. That all happened successfully, yet no delivery.

I scurried to login to myChart, and shot a concerned message to our pharmacist who manages Av’s drug orders. I stated the predicament flat out, “Hello, I realize there’s nothing to do about this on a Friday night, but…”

Orkambi is one of the groundbreaking treatments known as a cftr modular, which to some extent corrects the genetic defect that causes cystic fibrosis. Since Av added it to her regimen after she turned 12, we give it credit for a boost in her lung function, and even more, for stabler health. The thing to understand about Orkambi is, it’s a deluxe, precision medicine exclusively for select cf patients; its annual price tag could buy you a decent house in a small town. Unfortunately, you can’t just pick this stuff up at CVS.

We were in a pickle. She was in a pickle. For all the well-laid preparations, she would have to go to the Netherlands with a gaping hole in her safety nets. I could continue flipping out, I could seethe, or stress, or I could:

  1. Exhale and let Av know about the missing medication. When I told her, she launched into a rendition of a Scout song she made up a few years back on a camping trip. The refrain goes, “Iiiifff we die we die together…” I joined the chorus, which made us giggle for about half a minute. I then asked her, assuming she would be traveling with what little Orkambi she had on hand, whether she thought it better to take the regular dose for five days and quit cold turkey or halve the dose and spread it out over ten days, almost the length of the trip. She would decisively opt for the latter.
  2. Dial up the pediatric pulmonologist on call at the hospital over Friday night to ask if there was any shot whatsoever in hell of acquiring an Orkambi refill from a specialty pharmacy before 10:30 a.m. on Saturday morning? The answer: highly unlikely, but he would check first thing and get back to me. We discussed the dosing plan (he agreed with Av) and he reassured me she would survive this, too.
  3. Exhaust my limited courses of action, and then put the problem in perspective and accept the change in circumstance. Av traveling without enough Orkambi is pretty much a nightmare come true, but it could be even worse. Missing digestive enzymes, for instance, would be a far more painful prospect. So there. The whole trip is one giant leap of faith anyway.

What lesson, aside from the dark side of procrastination, was I reminded of on the eve of Av’s trip? (All you cf parents out there: order those refills early and often!) No matter what, we can’t let our foe get the better of us. We must balance the endless string of challenges cf presents us with enough levity for our own sanity. Take it from my gal. When she boarded the plane, she had a brave smile on her face, maybe a tear in her eye, my kiss on her cheek, and a ridiculously adorable campfire song in her heart… “Iiiifff we die we die together…