The Overwhelming Specter in the Life of an Adult with a Chronic, Terminal Disease

Most kids growing up aren't worried about needles, or if they are, it's because of flu shots. Most kids don't know the word infection by 8 or 9. Most kids don't know what death is until they lose a grandparent or a pet. Most kids don't ever think about their lives being abruptly cut short. Most kids don't have CF.

Most teenagers may be self-deprecating, but most don't joke about their own demise to desensitize themselves to the fact that may not live long enough to graduate college. Most teenagers don't constantly worry about their lung functions. Most teenagers aren't embarrassed to cough in class for fear of being labeled as "sick." Most teenagers don't have to explain why they miss school so much or why their lungs work differently. Most teenagers don't have CF.

Most adults don't have to fear getting close with other people, just so that person doesn't have to learn the intricacies of CF. Most adults don't have to second guess becoming friends with somebody, just in case they may have to grieve you at a young age. Most adults don't have to question bringing a child into this world, because of the risk of that kid also having CF or that that kid may be raised without one of their parents. Most adults don't have CF.

The nasty reality of the world is that death is a foregone conclusion for every living being (as of now; of course with the advent of gene therapy and billionaires, this may not be the case forever, I suppose). 

Humans are animals, just as dogs, birds, sharks, and cows are all animals. But humans possess superior consciousness to all other animals; it's what allows us to cure disease, send spaceships cruising millions of miles away, and even contemplate our own existence.

For that reason, humans are more intimately interconnected to the prospect of the death of ours and our co-existors earthly bodies. We're able to envision our deaths; what may kill us, how our friends and family would process our death, and even if we have a soul that persists after our bodies go cold. We're able to worry about the people we care about. We can imagine how terrible we'd feel if we lost the people we care about. 

On this point is the point of this piece: how the anticipation of an early death can disproportionately hold a claim to how people with CF process the world around us. It's not a stretch to say that when someone doesn't get vaccinated then carries a particularly virulent strain of the flu in our space that our very lives may be in the balance. It's not crazy to wonder, even if our lungs our stronger than they have ever been, if a flare up of the delicately balanced microflora in our lungs may trigger a pneumatic exacerbation that could wreak havoc on our lungs and bring the grim reaper too close for comfort.

Life is short. Whether you live to 30 or 70, that's still shorter than the time we want. This isn't a pity piece. People with CF don't want pity; we want sympathy and empathy. We want people to realize that everybody has their trials and tribulations, because we have a pretty firm understanding of unseen trials and tribulations.

Death is a future reality for everybody. CF is just a ticket for us to think about death much younger than most people. 

But thinking about death so much requires one to consider its antithesis: life. It forces us to consider what we hold most dear and what we want to fight like hell for.

Death isn't so much anything, but rather simply the lack of life. 

It's important not to glorify the grim reaper. Glorification of death is what gives it its immense power over our lives. Death isn't a choice; the fear of death is. But fearing death is like fearing an injury. They're both inevitable. 

From my experiences of living with a cold-blooded disease that claims people far younger than they deserve, there's only a single solution to combat death: by living your best life.