Why I'm excited for "Five Feet Apart"

I was going to title this, "Why Five Feet Apart is good for the CF community" but realized I don't know if it is. In saying this I am NOT saying it is bad, I'm simply saying I haven't done enough research, talked to enough CF patients, or seen the movie to determine if it is good or bad for representation or accuracy, awareness, etc.
This blog post is about why I'm on board with the movie, why I'm excited to see it, and why it means a lot to me.

On Friday, November 2, CBS Films released the trailer for the movie Five Feet Apart, a love story featuring two patients with cystic fibrosis. It draws similarities to The Fault in Our Stars, but that is for another blog post (maybe. There is a good chance I bring it up again here, so stay tuned.). Watch the trailer here: https://www.youtube.com/watch?v=5cJ7MT1RTqs

The Cystic Fibrosis Foundation recommends that CF patients don't come in contact with each other, because infections can spread too easily and can be very dangerous to the patients, but if patients do happen to meet each other, the CFF suggests they stay 6 ft. or more apart. This is to prevent infectious disease, and while it is a very serious thing and something I take relatively seriously, it can be seen as a joke to some patients, and honestly, it is kind of funny.
What makes 6 feet the magical number? I'm sure docs have studied and didn't just pull 6 ft out of thin air, but how big of a difference is 5 feet from 6? 6 from 7? Some patients even just say screw it and straight up hug each other. While I wouldn't do that, I get it. Life is short, and I've written about this. Live how you want because death is inevitable. For everyone, not just for CF patients, though people with chronic illnesses have a better sense of this. It is more immediate and so we are a little more willing to live.
I finally met my friend Natalie (shout-out to Natalie. I'm not telling her I'm putting her in this so if you're reading this, Natalie, shout-out to you), someone with CF who is my age in person this spring after talking to her online for almost 7 years (I think?). It was awesome! We made a joking comment about making sure we were 6 feet apart, and I don't think we were exactly 6, but neither of us made a big fuss about it. That wasn't the point. The point was we were meeting each other in person after years of talking behind a screen. The point was sharing our experiences, our lives.

And that's the point of Five Feet Apart. The movie, while is a romance and will most likely be sappy and cheesy and pretty Hollywood-esque, addresses a very real thing for people with any chronic illness, but CF specifically: the need for and deprivation of simple things. The first words you hear in the trailer are from Haley Lu Richardson's character: "I never understood the importance of touch. Until I couldn't have it."
Holy. Crap. Human touch. That's it!!! That's what she wants!! People with CF are asking to breathe, to touch, to love without boundaries, without fears, without worry. That's what Five Feet Apart is showing the world. It's showing the desire for us CF-ers to live, to breathe, to be normal. What will probably end up being my favorite line in the entire movie comes in at the trailer around the 1:45 mark: "This whole time I've been living for my treatments instead of doing my treatments so that I can live." CRAP. I love that line. I feel as if it embodies my way of thinking and honestly? I'm mad that I didn't think of it. I wish I could pass it off as my own but even though I can't, I still love it and will share it profusely.
This line gives me hope that the movie isn't going to just be a sappy love story. And just because it might end up having ridiculous tropes and one of them will die and stuff doesn't mean the movie doesn't represent cystic fibrosis or people living with it. Because from what I can tell, it has a lot of aspects of CF that hit home. They wear oxygen occasionally, they both have vog masks, they have a crap ton of meds, they hate doing treatments and meds but know they have to do them, they interact with nurses in a personal way (not just professional). There are a lot of cool aspects. I hope that the movie doesn't take place primarily in the hospital.
People are upset that they get even closer. FIVE FEET APART OMG. But again, what's the difference between 5 and 6? Especially for people who have a genuine connection. They don't (from what I can tell) break 5 feet (though I'm sure they will in the movie). They recognize their limits and understand what it means for them so they keep their distance but compromise a bit and decide to be only 5 feet apart. That extra foot to these lovers means the world to them, and of course they'd love more but they will take what they can get and this is what they can get.
With a disease that takes away so much, it's finally time to take back something.

Love is love. I don't like Grey's Anatomy's episode where there are two CF patients who are in a more intimate relationship than this one, and I'm not wild about the idea of a movie with two CF patients in a 5-foot-apart relationship, but again, are they just expected to move on? To give up and say "This is just something else cystic fibrosis is taking away from me."? First my breath, then my weight, then my lifespan, then my time, then my school, then my friends, and now my love. We shouldn't let cystic fibrosis rule what we do. We should rule CF. That being said, we still need to be cautious but why not live just a little?

I'd rather live just one more year having done a TON of amazing things, like travel, meet people, have great experiences trying new things, and living to my fullest than living another 1,000 years not doing any of that because I was worried about my cystic fibrosis.
It is a hard line to walk. You have to be careful, but you have to live. Quality of life is just as, if not more, important than life span. And I think Five Feet Apart shows that.

My vacation from CF

Since I can remember---before, even---I've been coughing. In order to diminish the coughing fits, I have to do 30 minute vest therapies (treatments, as I call them), usually 3 per day. I wake up with a brick on my chest; my lungs are so tight I struggle to get out of bed, because I know as soon as I move I'll be coughing for the next hour. So I lie in bed until the time of day forces me out, and I immediately go upstairs to hook up to my vest. This 1/2 hour is often interrupted many times with horrendous coughing fits, usually accompanied by puking and dry heaving. Once it's all finally over, I'm exhausted from the physical strain the treatment and the coughing demand.
So I try to go back to bed, but most days I have to work, or go to school, or have church. I muster the strength to get myself there and to participate. I serve at Olive Garden, which is a physically demanding job, requiring me to be on my feet and attentive to guests at all times. I usually only have about 1-2 minutes at any given time to catch my breath before someone needs something else. At school, I try to actually learn something and participate in class. It's hard keeping up with 4 classes at once, especially all of the homework they require. And at Mass, of course I try to participate and pray, sing, and listen. But sometimes, it's just so hard.

I'm supposed to check my blood sugars before every meal, take insulin if they're high, count the amount of carbs in the food I'm eating, take my medicine for my food, and then have an appetite that can help me gain and sustain a healthy amount of weight. But tell me, when you hear that dinner is ready, what's the first thing on your mind? Checking your blood sugars? Counting how much food you're going to eat? Or is it just eating?? Right. So honestly, I rarely do these things. It's so hard to remember, and when I do, it takes a while to do it all and I get hungry, dangit. I want to eat before my food gets cold.

Even though I'm working all day, or am at school or doing other things that a normal 20-year-old guy does, I have to do another treatment right in the middle of the day. It's only 1/2 hour, sure, but finding the time, and again the energy, to fit in that 1/2 hour is sometimes impossible. Then, before I go to bed after a long day of being on my feet, or participating in class, or playing sports or volunteering as a coach, I have to do another treatment. Then I have to set up tube feedings that help me gain weight. It's not that hard or time consuming to set them up, but it's just another thing to do. And not only do I have to set them up, because that'd be too easy; I have to swallow 7+ pills when I do them and do insulin (oh, yeah, and I have to check my blood sugars before bed, too). This doesn't include the various antibiotics, vitamins, and other CF medicines that I need to just maintain a normal level of health, let alone an excellent or superior level of health.

I just want my vacation. But there's just one problem.

It doesn't exist.

I will never be able to take my mind off of CF. There is no such thing as a vacation from it. I can never take a break or slow down and focus on other things. There's a chance it might not be cured in my lifetime. I always have to worry about cystic fibrosis.

But the hospital is the closest thing I get to a vacation from CF.

The hospital, oddly enough, is the place where it feels I have to worry about my CF the least. When I go into the hospital, I'm obviously sicker than normal and it's not a good thing, but I do always get a little excited when I hear I'm going to be admitted. Although there is never a good time to go in, I never really mind having to go into the hospital for a week or two. It means a break!!

Think about it: the nurses take care of me. They come in and give me my medicine, they hook up my antibiotics, they set up my feedings and set a schedule for my treatments, and my only job is to get better. I don't have a strict schedule to adhere to; I don't have to go to work, spend all day on my feet worrying about others, wake up at a certain time to make it to class, do homework, schedule baseball games and practices, or go to any appointments. I don't need to set my alarms to wake up and do a treatment or to take medicine. I don't have to worry about taking my meds because when I need to, they'll be conveniently placed in a cup and set on my table in front of me, with a glass of water I don't even need to get myself. My mind is allowed to go numb. I'm allowed to relax, finally, and not think about my lungs.

Sometimes this mindset can be bad, because I can get a little lazy after the hospital. I expect others to help and I feel as if it's not my responsibility. I find that sometimes I don't always put in the effort I need because I know that if I get sick someone else will take care of me. 

I also can lose my patience in the hospital easily because if I have the mindset of being on vacation, I don't want to be bothered. Of course, nurses and doctors are constantly in and out of my room, so I feel like I never get alone time. I'm not in the hospital to get alone time, though, I'm in to get better. While it's nice not to have to worry about CF here, I do have to let others take care of me because there really is no such thing as a vacation from CF.

Cystic fibrosis takes a toll on its victims. There truly is no break. There truly is no vacation. The disease doesn't turn off when we go to sleep, it doesn't let up when you are on a holiday break, it doesn't care if you have major events coming up. CF is constant. But when I'm in the hospital, even though I'm in for CF, I finally have a chance to just watch TV, play card games, go on walks, and take a mini vacation from the disease I can't imagine living without.

WWAD?

What Would Anna Do?

Since Anna died, but especially since I've been in college and especially since I've transitioned to the adult clinic, I've thought about this. I've tried to emulate Anna and the way she lived. She was so energetic, positive, kind (not only to friends and family but to everyone!), smart, open-minded, care-free and headstrong. She was really inspirational, but I'd say she's even more inspirational to me now.

During my first hospitalization as an adult, I learned pretty quickly (but not without the help from my sister, mom, brother-in-law, and girlfriend) that I need to advocate for myself. I'm an adult and nobody will hold my hand like they did at the pediatric side.
We held a care conference pretty early on to discuss my treatment plan and to figure out what's best for me. I was able to speak my mind about my concerns, my needs, and my goals, which all probably would have been addressed (or just not have been an issue) on the pediatric side but it was different here and without knowing that I should have addressed it myself, they probably wouldn't have been addressed and I would've had a much more different experience. (This is to say that I don't think there is anything inherently wrong about the way the adult side is run, but it just wasn't what I'm used to so I figured that everything would be the same in terms of how my care worked.)

That was new to me. I forget that I am on the adult side now and that I need to speak up for myself. I need to do things without people telling me to, and I need to make sure things are done the way that's best for me. It's on me now.
So where does WWAD come in? Well, I never really saw the clinic/hospital side of Anna, which in a way is actually kind of weird. We were far enough apart in age where when I would have been more aware of her CF and stuff, she went to the adult side and we didn't have many appointments together anymore. I hear a lot of stories, mainly from my mom, about Anna and how she was probably not the best patient. But she got her way. She knew what she needed and what was the best thing for her. She told the docs and nurses how she felt and who she needed to see and who she didn't need to see. I'm definitely sugar coating this, because of course Anna was nothing but an angel ;)

Anyway, I've taken that and started to try to do it. I see the same nurse every single appointment who assumes I don't know how to carb count and she treats me like a little kid. I told her the last time she came in that I didn't need another lesson and that she can trust me. Normally, I'd be quiet and just sit through it for the 20th time. That's just a small example.
I've also taken up leading the Climb for a Cure. That's something Anna always did; she was the one who started the team each year, would post something about it every day, try to recruit people to climb, spread the word to get donations, and it worked. If you heard about the climb for a cure, it was from Anna.
For whatever reason, I didn't think that was my responsibility to pick up. The first year after Anna died, we had a HUGE climb team in honor of her. Then it gradually shrank again until last year we had just four people climb. It was so sad.
So I said "WWAD?" and posted on Facebook. I started the team this year, I'm posting about it every day, I'm recruiting people to climb, I'm spreading the word to get donations, and guess what? It's working. If you've heard about the climb for a cure, it's been from me.

Yeah, I had to post a pretty tough status to get this support. But it rang true with many people. "We shouldn't have to wait for someone to die to have this kind of success." When I wrote that, we had just $25 raised. I blame myself. I expected everybody to do it for me. To donate, to get the word out, to climb, but, like I learned in the hospital, it's my responsibility. I need to advocate for myself, for my climb team, for research funding. I need to be more energetic, positive, kind (not only to friends and family but to everyone!), smart, open-minded, care-free and headstrong. That's what Anna did, and that's what I'll do, too.

Just be strong!

I'm pretty sick right now. Winter is especially hard with CF and it's not uncommon for me to get sick. This year, apparently, I'm sicker than normal (to tell you the truth, I'm probably hospital bound within the month).

When I'm this sick---to the point where I'm expecting to go into the hospital---it's hard to be strong. Anything is hard, actually. The smallest things take a ton of effort for me, things such as walking up the stairs or rushing to the other room for a tissue for someone. These tasks aren't normally hard---for anyone, but even me---but when I'm sick, I need a minute (or two, usually) to catch my breath and recover. It's sad. It's scary! Fortunately (unfortunately?) it's normal. Like, I'm not overly concerned that I'm lung-transplant sick because of this but still, I feel like I can't do anything.

People who are around me a lot during these times, namely my family and Noelle, may read this and be surprised by it (maybe not, I don't know). I try my hardest to be strong and cover it up. I'm sicker than what I put on. When I'm with Noelle and I put my coat on (another task that will occasionally take my breath away), I'll hug her, and when I hug her usually my air supply will be cut off significantly but I continue to hug her because I feel bad. I don't want to say I can't hug my girlfriend because I can't breathe due to my CF.

I hate using CF as an excuse. So I rarely do. But I think I should just a little bit more often.

Because most of the time, it's not an excuse. It's the truth. Especially when I'm sick like this, but even when I'm healthy, it's just hard to do things. I'm not strong. I can't breathe as well as others. My lungs hurt and I cough a lot. The smallest things will make it worse. I just don't want to seem weak, and sometimes (most of the time), with CF I do feel weak. I feel incompetent and helpless.

I'm not looking for your pity or sorrow, I'm just telling the truth. In order to avoid feeling this way, I've learned to cover it up as best as possible. I hug Noelle as much as I normally do. I hop up out of my seat to grab something for someone. I give up my seat and stand for others. I do what it takes to make it seem like I'm fine. Because the last thing I want is to feel helpless and constantly pitied due to my CF.
I'm worried that if I show my weakness and if I use my CF as an excuse, then I'll do it when it's not necessary. Like I said, most of the time, I'm not making it up; I actually do need to sit and breathe and calm down. But there are times when I could use my CF as an excuse just to get out of work, school, an event, or anything else. In order to avoid this, and to avoid using CF to my advantage unnecessarily, I don't use CF as an excuse at all.
I know, I know, I'm shooting myself in the foot. But I've seen people do this. Maybe not in person that often, but on Facebook, or movies, or I've heard stories (and I have, actually, seen it in person), and it disgusts me. It's like they want to have their ailment just so they can be lazy and weak and catered to.

Not me. I want to have a normal life with CF. And I know I can't. I get it. I'm not that naive, but I can do things here and there to help allow myself to lead a normal, happy life. Being strong, really forcing myself to do what everyone else can, helps. Maybe it makes me stronger, maybe it makes me dumb. I don't know.
People on CF pages always pass along the quote, "You were given this life because you are strong enough to live it." I try to prove that every day.