It Has Taken Me Awhile to Write This One

I always get asked how I am able to stay so optimistic all the time. The truth of the matter is that there are some tough days. There are some really, really tough days – days when I look at myself in the mirror and I’m just like, “here we go again.” The kind of days when nothing is easy at all, not even the most mundane tasks, like getting from bed, down the stairs to the couch. Those days are the worst. But for every bad day that I go through, there are hundreds of good days.

This past month has really been, I don’t know, not the best, for lack of a better phrase, within the CF world – at least my CF world. Through whatever medium of social media, I feel like I have seen a picture of a different person each day tied up to an oxygen tank. For some reason, I can’t break away from the feeling that an oxygen tank is an ugly symbol of the ever-present CF threat. I have been there before and I hate whenever I am oxygen dependent. It crushes me.

This past month, I was also the sickest I’ve been in awhile, a really long while. I’m better now, but this was an ugly taste of it – I probably could have used a little oxygen in hindsight.

Beyond that, though, two CF patients I had a connection with passed away. I can’t say that I knew either of them very well, but I did know them – one through a fantasy football league, Chris, and the other through a BEF event, Ellie. I knew about their fights, just like they knew about mine. It is nearly impossible to overlook whenever something like that happens. The worst part, for me, was feeling totally helpless – unable to do anything about it.

As much as I hate being labeled a “cystic,” “fibro” or “patient,” there is a very special bond that we all share. We all know what it’s like to wake up in the morning looking for a deep breath of air that isn’t coming. Really, we all know what it’s like to have spent countless hours sitting on the couch doing treatments day after day looking out the window waiting for the day to come when we wont have to do our treatments anymore. The bond becomes a little tighter when CF patients fall to the disease. I can only hope it’s not so hard for them breathe anymore. In fact, I know it’s not so hard for them to breathe anymore.

So, how do I stay so positive when I go through stretches of time like this? There definitely are times when I can act like CF isn’t a part of me at all, but months like this past month remind me that CF is very real. I would be naïve to think that nothing bad could ever happen to me. The hard truth is that cystic fibrosis is a killer. It’s nasty and it doesn’t care who or what it takes.

I owe my resiliency to CF patients that came and went before me, and fought just as hard as I do, or really, any of us do. I know what I am capable of and how to push myself. My positivity stems directly from my ability to dream and constantly want more. Although cystic fibrosis may be considered terminal, I am able to overlook that fact. To me, CF is something that can be fought.

These days, there is nothing I hate more than having to miss a day of work. I like to think of myself as an active member of society, so when I am able to accomplish something for both, myself and the people around me, I am wrapped in a sense of joy. Although I may be sick, I am still productive. My optimism comes from the fact that I know I am able to do whatever I want to do – that very statement is true for you too, whoever you are reading this. If you put your mind to it, you are capable of achieving greatness.

I do whatever I can to keep myself healthy, so when the day comes that I won’t have to do treatments anymore, I’ll be able to take a deep breathe and enjoy what I have created for myself. Really, maybe more importantly, I’ll be able to throw back a couple Budweisers without having to deal with a 4-day hangover. I cannot wait for that day.

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The picture at the top is from the album Reach for the Sun by The Dangerous Summer. I actually only like one song on the entire album (“The Permanent Rain” thank you Pandora radio), but for some reason I think I like the idea of reaching for the sun.

I have also found that reading definitely helps me get lost in a different world. I’m not talking about the crappy books I was assigned when I was in school about God knows what, rather I’m talking about whatever I want to read, freely. Here’s my reading list over the past six weeks:

The Only Thing Worth Dying For – Eric Blehm

Killing Patton – Bill O’Reilly and Martin Dugard

Catcher in the Rye – J.D. Salinger

Outlaw Platoon – Sean Parnell

No Hero: The Evolution of a Navy SEAL – Mark Owen

Remember, if you want to see me write about anything specifically or want me to answer your questions in my next blog, you can email me at [email protected]