CF Topics

May is CF Awareness Month

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The Importance of Awareness

Since May is CF Awareness Month, I want to take the time to really hammer home how important awareness is. It may seem obvious why it's important for people to be aware of CF, but when I mean awareness, I mean when people know of me, but don't really know me that well, but are familiar with my life as a CF patient. 

I enjoy writing and I think I'm skilled at it. I'm also an explainer, so in just about everything I do, I try to give thorough answers. (Side note: a couple weeks ago, a buddy of mine asked how I choose books to read. The response he received was a novel, no pun intended.)

So when I write about CF, I write honestly and deeply. I explain everything in as detailed way as possible. I want to know why people think and do the things they do, so I want people to know why I think and do the things I do. I feel as though communicating through my writings is the best way to do that. Writing gives me time to think things through more clearly and put them more eloquently.

The Importance of Openness & Transparency

On a further point of why I try to be as thorough in my writings about CF is because of how crucial it is for us to be openness and transparent about our CF. Living with a chronic disease has affected our worldview intimately, so sometimes it's easy to forget that some people have never been around somebody with our life experiences.

If I'm open about my CF, I hope to create a culture of understanding where people can feel free to ask me whatever questions they want. I want people to understand CF, I want people to ask me the tough questions. It's nice to be talked to like an adult. Trust me, there isn't much that can be asked of an adult with CF that they haven't been asked or thought of before. 

If I'm transparent with people, especially regarding comments that can be misconstrued as offensive, I can teach somebody how to better engage in the conversation. 

CF Awareness Month

So for this month, I'm setting out to write more comprehensively about my life and what I go through. I'll explain medications, appointments, the psychology, the process our health goes through as it deteriorates, and many other points.

Please feel free to ask me any and every question you can come up with. I'm an open book. Comment on my statuses on Facebook or here if you want it to be public, or send me messages privately if you prefer. I have no preference either way. 

TL

 

We All Have a Fight and Why Empathy is Such an Invaluable Skill

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I believe deeply that it's important to develop a good skill of empathizing with others, even though it can be painful sometimes. This piece is about how CF affects me so deeply. I wrote about how the internal fight is hard and that I put out an image of a confident fighter and sometimes that confidence is nothing more than a veneer. 

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

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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.

TL