CF is often called an invisible disease. It’s invisible in the sense that you can’t quite see what’s going on underneath my skin. If you saw me walking down the street, your first thought might be, “wow that guy looks like a stud!” not, “wow that guy looks horribly ill.” While I may consider myself a stud (hopefully chicks around the world do too), I probably do fit the “horribly ill” description to an extent. It is certainly not bad that CF is an invisible disease, but it can be misrepresented as a result, so here is my list of 7 things that go on inside a CF patient. I chose 7 because 7 is my favorite number, and the CF gene is located on the 7th chromosome, duh. Science.
1. I am not a sick kid
Yes, I do realize that having the cough of a 60-year-old smoker, taking dozens of pills daily, doing hours of breathing treatments and occasionally coughing up blood doesn’t quite define the word healthy, but it works for me. As far as I am concerned, I can really do whatever the hell I want. While I do have some limitations, they are not necessarily set in stone. My body does handle the rigors of everyday life pretty well. Thank you science. Seriously, though, if CF kicks my ass one day, I damn well expect myself to get out of bed the next morning and carry on with my day. If there is anything CF has taught me, it is that hard work pays off. I can immediately see results when I am an active go-getter or a lazy bum. It’s up to me to decide who I want to be.
2. If I look exhausted, I probably am
Sleep can be very hard to come by. Have you ever had a cold or what we call “a cough,” and haven’t been able to fall asleep? I know Drew Brees has because he does those Nyquil commercials all the time. Imagine that feeling quite a few times throughout the year, but for days or weeks on end. Sometimes, that could be a regular feeling for me or anyone with CF. I’ll be the first to tell you, a persistent cough is a pain in the ass. Further, though, when I am sick, I’m usually up late into the night doing an IV infusion, then getting up real early to follow up with another IV infusion. It’s funny, whenever I’m sick, I’m always told to get as much sleep as I can. Hell, I’m always told to make time for rest even if I’m not sick. Not really the easiest thing in the whole world. The fact of the matter is that a CF patient is constantly fighting infection, and it weighs heavily on us. By the time it’s 5 or 6 in the afternoon, I’m usually exhausted looking for my second wind.
3. Stress is unavoidable
CF is as much of a mind game as it is a physical challenge. I find myself constantly playing out scenarios in my head. Just like anyone with or without CF, my decisions can have unintended consequences. Unfortunately, I found that out the hard way in college. When I was a freshman, or I guess, maybe a sophomore too, being up three or four nights in a row until the crack of dawn wasn’t the worst thing in the world, but as I got older after years of beating myself into the ground, that changed. Consecutive nights of that kind of behavior now, would lead to weeks of being sick. Not fun. That epitomizes some of the decisions I have to make, though. I am 23 years old; I am supposed to get myself into all kinds of messes, but I have to know what that can do to me. I find myself getting pulled in a million different directions from time to time. Should I really be getting up at 5:30 in the morning to go to the rink tomorrow? It’s my best friend’s birthday tonight; can I stay out until the sun comes up? I didn’t get home from my football game until 1:30 last night and didn’t finish my treatments until an hour and a half later, should I really be going out and doing much today? Here’s the deal, I am very much the kind of person that loves to do anything whenever I have the opportunity to do so, but I deal with an immense amount of frustration and stress when it comes to not doing something that I want to do. I know that I am not letting down the people around me in my life when I have to say no, but it feels like I am when I have to shut it down.
4. Sometimes pain is a reality
I know it’s a cliché, but pain really is weakness leaving the body. There are times when I don’t have any clue what is hurting, but whatever it is, it hurts. The pin pricks, stitches, and needle sticks are one thing, but chest pain and general aches are in a whole different category. Sometimes there’s no better way to deal with pain than to just ignore it. If I allow myself to be consumed by one thing, no good can come of it. I’ll tell you what; I will not allow myself to be consumed by pain of all things. It comes and goes, from time to time, but in the grand scheme of things, it does do a hell of a job of toughening people up. For me, or anyone with CF, it’s just a part of life.
5. Being admitted to the hospital isn’t all it’s cracked up to be
There’s this show on Fox called Red Band Society, and to be quite frank, it’s horrible. If you actually enjoy watching it, I seriously question what you consider entertaining. I really think it would be a small miracle if the show gets renewed for a second season. For those of you who haven’t watched it, or don’t know what it is (sadly I can’t include myself in that group), it is a show about a bunch of teenagers that live (?) in a hospital. Yeah, I don’t really get it either. Anyways, each kid has a different issue ranging from cancer all the way to cystic fibrosis. Normally I would say any press is good press when it comes to awareness around the disease, but not in this case. In the first episode, my man with CF is seen in a closet smoking the weed. Here’s the honest truth – I would be six-feet-under in about five seconds if I ever did that, so I’m going to go out on a limb and say that this show sends the wrong message about CF patients, but I digress. What really gets me, though, when it comes to this show is how
living being in the hospital is glorified. They sort of make it seem like it is fun, which, is weird. It also leads these kids to a sense of camaraderie. I don’t think I’ve ever made a friend while being admitted. I’m normally too busy trying to get out. Now, I do understand that some amazing things can happen inside a hospital, but that is not where I am going with this. I am talking about life inside the hospital, not treatment. At the end of that first episode, I bet there were mindless people all over the place saying to themselves, “wow, that looks fun! I want to get sick and stay in that hospital!” I want to tell those people something; no, you don’t. No offense to my nursing friends from BC or my friends who may be care providers, but staying in the hospital is hideous. There’s nothing fun about it, and I bet any caregiver would agree with me. It is impossible to sleep, the food is never good, someone always comes into the room at like three in the morning to draw blood or something, and you’re ADMITTED TO THE HOSPITAL. The only thing that actually happens while you’re admitted to the hospital is that time continues to move forward just outside the window while you’re inside standing still. If you are a CF patient, or anyone that may see significant hospital time in your life, looking for goals to set for yourself, your very first goal in life should be to stay out of the hospital. And, if you’re in the hospital, your goal should be to get healthy, and get out. I have been fortunate enough to have only had a few hospital stays in my life, each having been two or three days at a time. I do everything within my power to stay out.
6. No, I do not include myself in the Ebola panic in New York City
While I realize that Ebola is an extremely dangerous virus and it is not something to overlook, I do not wear a surgical mask on the subway here in New York City just because there is an Ebola “scare” here in the city. Someone looked me straight in the eye the other day and said, “don’t you think you’re overreacting a bit, buddy?” I laughed and kept walking. The truth of the matter is that I am far more likely to be in direct contact with someone that has the flu, than I am to have even the remotest of ties to someone that has been exposed to the Ebola virus. I can confidently say that I am not going to get Ebola, and neither are you. The flu, however, can be horrible for a CF patient, even life changing, so to be completely honest, I don’t really care what people think of me when they see me walking through Penn Station with a surgical mask on. Here’s the deal, I have things to do, people to see and job commitments to live up to, so I don’t have time to come down with the flu or any other virus for that matter. I’ll wear my surgical mask whenever I want. It usually gets me my own seat on the train, too, so that’s a major positive, I think. No one wants to sit with a sick kid, duh.
7. I’m actually just a regular guy
It’s not like I am a part of an exclusive club or cult or something. I just have a genetic disease – that’s about it. I say that with some sarcasm, but really it’s not taboo or anything to talk about cystic fibrosis with me. Many CF patients are open about their disease, obviously I am too, but I very frequently sense hesitation when the subject is approached. There’s nothing wrong with it. Beyond CF, though, I have my hopes, dreams, passions and desires just like everyone else. I also realize that sounded very mushy and weird, so for the record, I do go out drinking and go to football games and put steaks on the grill and stuff like that with my buddies too. In all seriousness, for the time being CF may be with me, but it is not the whole story.
While it may seem like some of these things underneath the skin of CF may suck, and they do, I have made it this far in life and managed to be pretty happy. For me, dealing with cystic fibrosis is all about balancing things out and outweighing the negative with the positive. Whether we like it or not, life is full of challenges – It’s just a matter of whether or not we choose to overcome them.