Staring is caring

First off, I'd like to say, welcome to my blog. I feel like everyone has one at one point of their life, and it's my turn to get one. So just to forewarn you, these first few blogs may not be the best, but I'm sure I'll get the hang of this whole blog thing.

Anyway, I didn't start this to talk about how I think my blogging career will be. I wanted to talk about my CF, how it affects me, and what it's like in the life and mind and eyes and all that stuff of a person who carries the burden that is Cystic Fibrosis. Since it is summer, I'll start with what it's like to have CF in the summer.

It sucks.

I have a feeding tube, which is necessary for my weight gain, however, it's not the most attractive or normal thing you might see. So, naturally, when I go to the beach or pool, or even just play outside shirtless, people stare. I used to be offended and stare at them back until they made eye contact and looked away guiltily. I'm not gonna lie, I still do sometimes, if I'm annoyed or having a bad day or whatever. But as I've matured, I've learned, mainly through my sister Anna, my CF buddy, that people aren't staring to be rude. They're just curious. Humans are naturally curious, yet when they see something they're curious about, they're afraid to ask because they want to avoid offending the person or any awkwardness that might occur. But really, they're offending me and making it awkward by NOT asking, and just staring. When people (usually kids, innocent to the sensitive side of the world) asked about it, I blew them off, or gave them a sarcastic answer. My favorite was "I can inflate myself like a beach ball" because it sort of looks like a plug that you might find in a beach ball. I've started to become more open to informing others about CF and my life with it, and again, I think Anna had some say in that. Indirectly, of course. Now when people ask, sometimes I'll give a funny answer, but then I'll tell them what it's for. I don't tell them about my disease necessarily, but that I use it for weight gain because I have trouble keeping on weight by myself. They'll usually just say "oh" and go back to their business (usually it's when I'm in line for the diving board; when they have time to talk and not interrupt my life).
It's hard to walk around with people staring at you all the time. It makes you uncomfortable. Luckily, I've gained confidence and weight, so I'm not so insecure about people staring. I've learned that really, people are just curious, so they stare. Staring is caring. And people, if you see me, or anyone, and have questions about their appearance, be sensitive, but don't be afraid to ask. They're aware of their situation and wouldn't be out in public if they didn't want anyone asking.

My feeding tube

Another part of summer with CF that sucks is doing my treatments. Treatments suck usually because they take time out of my day and force me to sit down for 1/2 hour while I shake. For one, it gets tiring after about 15 minutes! And when you're having a great time with friends or family outside, interrupting your precious summer does not seem like an attractive idea. Usually we'll have to plan events around when I can do a treatment, even if it means me bringing my vest machine to wherever we're going. This then causes people to stare once again if it's in public, and for some reason I'm even more insecure about people staring at me while doing my treatment. Maybe because I can't talk during it, so I don't have the opportunity to explain it, or because I've become to associate my treatments with personal, quiet, (well, as quiet as it can be with my machine shaking like that) Jeph time, and when people stare or talk to me or interrupt it in anyway, I get kind of annoyed. I can't sleep in all that much during the summer, because it's ideal for me to get 4 treatments in a day, and if not 4, then 3. I have to space them out 4 hours apart from each other, so in order to do that, I have to wake up at 9 at the latest, because my last treatment of the day works out to be 12 hours apart from my first one, and doing a treatment past 9:30 is not ideal. Especially since I have to stay up later anyway because I have to hook up my feedings and do all my insulin and take my medicines before bed, which is an added stress. That sucks when I'm exhausted from a fun, tiring summer day, and have to do all that. It's not easy. Or fun


As much as I try to keep my lungs healthy and in tip-top shape, it's not easy. And when your lungs aren't in their prime during the summer, your summer gets less fun. Any activity is hard. I can barely run to second base in baseball without having to call time to pretend to tie my shoe so I can catch my breath. Or when I'm swimming, I can't dive down for the dive sticks at the bottom of the pool as fast as the others, so usually I can't race them, which was always fun. Just more motivation to keep my lungs in shape, I guess.

CF Sucks. Especially in the summer. The treatments, not sleeping in, and most of all, the staring. It all adds up to be one big, awkward, annoying zit. CF is never fun, and it's one of those things you can't just blow off for one day, or forget about, because it will come back and bite you in the butt. Hard. I've been learning how to deal with it all, one aspect of it at a time. But there's a lot, and I'm sure it'll take a while.