Back in elementary school, I had plenty of friends, just like everyone else. I had a really great friend, Andrew, who accepted me for me, even with my CF. He sort of enjoyed watching me do my treatments it seemed. We had a ton of sleepovers, we hung out all the time, it was great. Unfortunately, middle school happened and by the time we entered high school we were no longer on speaking terms. It wasn't the CF, but other reasons.
When I looked around at the world around me after that, I realized I had no other super close friends. Sure, I had friends, but none that really knew about my CF, and none that I would ever hang out with outside of school. I feel like my cystic fibrosis in middle school had a part to play in this. I was hospitalized a few times during middle school, leaving me out of the loop of all of the great things and opportunities that happened. I'm sure you all remember how middle school was: everyone started joining different groups and formed cliques and everything changed. I wasn't really there for the change. When I was, it was too late; people had their groups and I was that weird kid who was gone a lot and had to leave early. Kids are mean.
So I definitely missed out on the whole getting new friends in middle school. Again, I had friends without a doubt- joining theatre was probably one of the best decisions I've made- however, there weren't and still aren't many guys in theatre, and in middle school, if you were friends with girls, then rumors started. For some reason, I find it hard to connect with most guys anyway. Whatever.
Being in high school has changed me big time. Now, I pretty much only decide my friends based on my CF. Last spring, during lent, my sister Anna wrote me a letter. In it, she wrote, "I never allowed myself to have much of a social life because I was afraid of having CF and of what others might think of me, but you don’t let it stop you. If anything, you let it determine who is worthy enough to be your friend; if they can handle the CF, they are worthy. That is truly remarkable, and I wish I had been like you when I was younger." In middle school, I was afraid of other people's thoughts of me and my CF just like Anna, but something happened and I don't know what, but I started to change. If people can't handle my CF, then screw them, it's not worth talking to them. That's pretty much my outlook on life.
In all seriousness though, I think it was JC. Anna and JC were together long before I entered high school but I didn't see it until then: JC cared and loved for Anna more than anything in the world. Her health was his number 1 priority. He asked questions at appointments, he tried the vest and he put a fake PICC line in to see what it was like (it sucks, by the way). I remember tweeting something like "I need someone to take care of me like JC does with Anna" or something similar. Anna texted me later saying how she teared up and she told JC about that.
I think that's when I really started to form my friend group around my CF. I needed people who would understand that I just need to sleep sometimes, or I need to take a break. I need people who are willing to take me home early so I can do a treatment. I know it's not the most convenient thing- it's not for me, either- but I started looking for the kind of people that could help. And I found a good bunch.
A lot of people in theatre know about it and understand. I cough backstage sometimes, and I try to subdue it. Sometimes I'll step into the hall so the noise doesn't carry onstage, and I'm very thankful no one says in anything. Sometimes I just have cough attacks, and after a bit I'll be okay. No, I'm not gonna die, so don't say that. Yes, I might cough up a lung. But don't say that, either.
In some ways, I sort of regret making friends based on my CF, because it really limited me to who was there and who wasn't. Sometimes I wish I could go back, not tell anyone about it, and be in a "group" like everyone else is. A group who goes to each others houses all the time and does stuff every weekend. But I can't, so I'm stuck being picky with friends.
My friend Billy really took me under his wing this past school year. Unfortunately, he was a senior and just graduated, so he won't be there anymore. At least, not in person. Billy was the one who comforted me when Anna first started getting pretty bad this last May. He showed up to her visitation and was always there to talk. Billy gave me rides everywhere and we really connected. I could go on and on about this guy, but he is just one example of the kinds of friends I need.
My other closest friend is my girlfriend, Noelle. Before I got super serious with Noelle, I told her about my CF and everything it entails. I want people to know what they're getting into, and to give them an opportunity to escape. Noelle stayed, and thank goodness she did. In the past 9 months that we've been together, I've gained 30 pounds. She helps me remember to do my feedings and everything. Night time gets pretty crazy and jumbled and I usually forget to do everything, what with homework during the school year, me just being tired, who knows. Doing my feedings are not the first thing on my mind. I'm going to be honest, before last November, I rarely did my feedings. I was barely 130 pounds for 6 months, and now that I remember to do my feedings I've gained 30 pounds. That's amazing.
Noelle also wakes me up bright and early in the summer so I can get 3, maybe 4 treatments in everyday. Partly it's because she's already up for tennis, but another part is that she just cares and understands so much. So many people have commented on how I look really healthy and a lot bigger, and I credit that to Noelle for pretty much forcing me to do everything.
Noelle also has tried the vest, but not the whole thing...yet! She's done a few different settings just to get the feel of it. It always makes me feel good when others, not necessarily my girlfriend, want to know what it's like and take the extra step to remember, help out, or try things related to my CF.
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| Noelle doing a treatment |
I still don't have any close friends. Not close enough to hang out with outside of school. I think I missed my opportunity to get really close to anyone and make good connections. Don't get me wrong, I have a ton of great friends and I love them all, but none that I can call my "best friend" or go to text regularly to update them about doctor appointments or anything. It's kind of hard to make friends with my CF. I can't do sleepovers unless I bring my huge vest machine over, I cough all the time, and I'm just pretty high maintenance. It's hard, but with CF, what isn't?
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