Well, May is here so that means it is the start of Cystic Fibrosis Awareness Month, or in other words, a chance for us to jam as much CF content down your throat as possible so that you hopefully come away with some inclination of what it is like to live with CF and why it’s important to help!
All joking aside, the lack of education around cystic fibrosis from the perspective of the general public is concerning. Most people spend one day of Biology class in 9th grade covering the topic, and that’s it. As a result people with CF can be thrust into some pretty awkward situations when it comes to communicating with an otherwise uneducated person on the topic. I have touched on a few of these stories before, but they are important worth noting again.
So I guess this blog post should really be titled, “The 11 most notable times I have been judged for having CF” because these crazy things always pop up, but alas these are the 11 that really stick out.
- The New York City Subway
I like to talk about this all the time because it’s a pretty casual experience that happens quite often. Whenever I travel on the NYC Subway or commuter rail (LIRR) I wear a surgical mask. That mask undoubtedly draws attention to itself, to the point where people, whether subconsciously or not, do their best to avoid me. I can venture a few guesses why, but little do the unsuspecting commuters around me know that I’m actually protecting myself from them. The stares and subtle comments are noticeable and have been “normalized” by this point. I was certainly hesitant at first to be labeled as “one of those people” wearing a mask in public transportation hubs, but ultimately it’s necessary, and that’s what I said, a few months ago, to the conductor who asked why I was wearing a mask. I’m sure he sees it all the time, so he had no problem asking. The flu is a killer – the way people look at me, is not – and he totally understood that. Besides…. Typically I get my own seat on a train car, what’s better than that?
- Flying on an airplane
Similar to the way I travel on the subway with a surgical mask, I do the same thing on an airplane. One trip in particular sticks out more than others. I was in college, and was dealing with an active infection. It wasn’t an emergency to the point where I needed to be treated in Boston, but I had to get home to start IV’s and the quickest (and cheapest – Amtrak can be totally overpriced) way to get back was to get on a shuttle flight. Once on board, I found myself in a coughing fit and a passenger in the row in front of me started to take exception to it to the point where he started offering hand sanitizer to people in our immediate area. In not so many words, he turned this group of passengers against me. Once he had his allies he decided it was appropriate to confront me with a threat of legal action if I didn’t get off the plane before it took off. I saw the situation ending in one of two ways: we’d be dragged off the plane like that guy on the United flight a few weeks ago, or it could be resolved peacefully. I decided to inform the man that I had cystic fibrosis and that coughing was normal, and he was going to have to deal with it just like I do every single day. Since most people are inherently friendly the rest of the cabin jumped to my side of the disagreement and the angry passenger reluctantly sat his ass down and dealt with my cough for the rest of the ride home.
- Taking a trip to the deli
In the same sort of fashion that I was disrespected on the airplane, a man once confronted me for coughing in line at the deli. He went off about there being fresh food in our presence and that I was going to be spreading some sort of pathogen to the rest of the people who chose to eat lunch there that day. In fairness the CF cough is pretty violent, but there’s only so much I can do about it. I happen to be a regular at this deli, so most of the people in there knew what was going on, but this guy was an outsider. So there I was uncomfortably telling him why I cough so much. He immediately offered his apologies, but his message had been heard.
- The feeding tube
My feeding tube is the most outward sign that I am “sick.” If my shirt is off, it’s in plain view for the rest of the world to see. Around this time last year I told the story of when I was confronted over my feeding tube. I was at a party, wearing a shirt that was far too small, so it was possible to see the tube pressing against my shirt. A cute girl walked up and actually grabbed my feeding tube to the horror of my friends standing next to me. She asked me, “What’s that?” So I gave her the basics and asked if she could let go. She said, “Oh! Don’t worry. I’m pre-med,” winked at me, then walked away. Looking back I probably should have parlayed that into something more, but I think I was so shocked at what had just happened.
- Pumping iron at the gym
The gym should be a judgment free zone, but it is not. Between the embarrassing videos of people working out all over the Internet to the unfriendly looks thrown around the weight room, the gym can be a bit intimidating. Despite the constant use of my feeding tube, I am still a bit underweight and as a result I have a hard time maintaining muscle mass. Basically, I’m pencil-thin. I think it comes into the same territory as walking around the city with a surgical mask on, but I’ve definitely gotten used to the “I’m stronger than you, get out of my way” looks that people flash at me when I’m working out. And to be honest, this is actually the one that least bothers me, but I’m adding it to the list simply because I want people who may feel intimidation in a weight room to know that this happens to me too! Don’t let other people be a barrier to your training.
- Gunnar Esiason does not equal Walter White
Doing homecare IV antibiotics during my college years was always a bit of an interesting thing. One time in particular, though, I was on an antibiotic that required me, rather than the pharmacist, to reconstitute it (for one reason or another). Reconstituting medicine requires some effort and a sterile field. It also involves a slew syringes, alcohol pads and little vials of medicine and sterile water. Needless to say it is a little bit of a production. So one day, my roommate decided to host a study group for an exam the next day. I just happened to be in the room reconstituting my medications. It was really no big deal because everyone sitting at the table with me knew what was going on, but then we got a knock on the door from one of my roommate’s classmates – someone I hadn’t met before. The guy walked in, took one look at what I was doing, immediately assumed I was doing my best to recreate a scene from Breaking Bad and left without saying a word. We found out later that he wanted “no part of whatever was going on in there.”
I once dedicated an entire blog to spitting. I know it’s gross, you know it’s gross, but it is a necessity for someone with cystic fibrosis. My lungs don’t filter properly, so I have to do it manually – coughing and spitting, and that cough is pretty productive. I think you get the picture here, but whenever someone encounters my dark green mucus for the first time, it can be, well, a little off putting. One time specifically, though, I was told to “stop dipping.” Yes, that is right. Someone thought my green mucus plug was tobacco. I’m not sure I have ever come across a green tobacco spit, but who knows what world this guy was living in.
The other lovely bodily function I have far too great an understanding of is farting. What can you expect when you can’t digest fat, I guess? Try taking an exam and needing to let one loose when you know it’s going to be anything but silent. I’ll let you finish that story off in your mind.
- Disturbing the peace
Another college test taking story… I know my cough is loud and violent, especially in a quiet environment. I was once asked to move out of a final exam testing location into an isolated space so I could cough in peace. To be honest, I think this one benefited everyone involved. I was clearly stressed out over trying to suppress my cough because I knew it was bothering my peers, but that was a battle I wasn’t going to win. The professor took the initiative and straight up moved me into another room. It certainly wasn’t an easy thing for him to do considering the fact he knew I had CF via the disabilities office and it would be a slippery slope to violating my privacy. So I applaud him for handling it in about as subtle a way as possible.
- Handicap parking
It took me awhile to accept that handicap parking is an entitlement afforded to me. After all, I do qualify as a disabled person, but for some reason I didn’t want to believe it. I am certainly capable of walking from point A to B, but my parents and doctor found it necessary that I apply for a handicap tag so that I could use it in the event I got sick. Like most things in life, my parents were right. I found myself so sick one time that walking from my bed to the bathroom was a challenge, let alone from the car to the storefront, but I needed to get to the pharmacy to pick up a script. Of course, on that day I was confronted over parking in the handicap spot. A man saw me get out of the car and walk to the store. As far as he was concerned I looked just fine doing so. He threatened to call the police if I didn’t PAY HIM. He actually tried to blackmail me. I just laughed (interspersed with a cough or two) and kept walking.
- Becoming Violently ill
I’m going to wrap this post up with perhaps the most serious one. In times of crisis people will step up and help, while others will shy away. During my senior year of college, right as my health was beginning to decline, I suddenly became violently ill. We had a bunch of people over in the room and I barely made it to the bathroom to vomit, or rather to finish vomiting. I basically created a little trail of bile, mucus and stomach acid leading from the common area to the bathroom. On the verge of collapse and pure embarrassment I, very quickly, felt alone. In the moment, there was a person in the room who just got up and left, but at the same time my roommates came running to my aid. One of them actually cleaned up the whole thing, and I have never forgotten that.
Cystic fibrosis is not widely understood, and that isn’t anyone’s fault. The bottom line is that it is a rare disease, and quite frankly, that can lead to some uncomfortable situations for people living with CF. Some are funny, and others are more serious. Our goal with CF Awareness Month is to help smooth over that gray area between living with CF and not knowing anything about the disease.