For example, my dad will always ask us kids to come outside and help him with various activities: cleaning the garage, helping with the patio, mowing, you name it. I try to help as much as possible, but most of the time my dad will send me in so that I can do another treatment, or the air quality from the particular project isn't up to par for my lungs, so I shouldn't be around breathing it in. Other times I simply don't feel well enough to get up and help. CF leaves me so fatigued and, for lack of a better term, pooped, that even activities that I want to do seem like a burden. Of course my little siblings get annoyed and mad at me, which hurts. What they don't understand, however, is the necessity of me staying inside. Especially when my lung functions are low, the most important thing I can think of is my health.
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| My view from my room as everyone helps work on the patio |
Having to stay inside so much throughout my life, it feels as if CF has stripped away my manhood. I'm left feeling weak, as I watch my little brothers grow physically and mentally into men. They know so much more about tools, how to use them, where they are, what they're for, what they're called, this and that. They've experienced some pretty cool things, things that aren't really even worth bragging about because in all reality, they're not that cool, but it's cool to hear the stories and hearing about them makes me feel so left out.
I also feel vulnerable, having my dad take care of me like that. I know that sentence seems so weird and backwards and you're probably thinking, What? Isn't that what parents are supposed to do? Well, yeah, but at the same time, I'm a 17 year old guy, not a 14 year old girl. Again, the whole gender roles thing may apply here, but generally speaking, 17 year old guys are pretty independent, and don't have their dads looking after them. Don't get me wrong, I like having that care for me, but I feel like it's taking away my chance to grow and mature. In a way, it's like my pride is being taken away, but in retrospect, it teaches me to stay humble.
Cystic fibrosis also has created me to be one who has very strong emotions, which is both good and bad. I speak my mind a lot, and am not afraid if I am different or wrong or anything. However, on the bad side of the emotions, I'm, well, emotional. I'm a romantic, which some might think is weird for a guy. I direct the cause of this to CF because I've found that finding someone to help care for me (although it contradicts my last paragraph) and love me (as cheesy as it sounds. Geez I hate having that phrase in here) really improves my life health-wise. My romanticism has gotten to the point where I'm on the verge of crying at most weddings, fantasizing about my own, specifically my vows.
I feel like it'll be such a hard time saying my vows, partly because I'm a romantic and it'll be my wedding day, but partly because of my CF. I look back to Anna's wedding, how both Anna and JC struggled to choke out the words "in sickness and in health", obviously because of Anna. I was considering this the other day, and thought how although our situations are the same on a basic level, they are pretty different, and although it seems superficial, the difference really isn't: Anna, the sick one with CF, was a girl, and JC, the healthy one, the caretaker, was a guy. Again, this fits into the traditional gender roles of the man looking after and taking care of the woman, in sickness and in health, and I realized how different it is for me.
Being a guy I feel the need to step up and be the hero; I feel I need to be muscular, masculine, hairy, all that good stuff. Having CF prohibits me from fitting into the manly mold our society and I have shaped. CF of course keeps me small, making it hard for me to gain weight and muscle. Not impossible, but I do have to work a lot harder for it. I've also been told a few times that it actually delays puberty, and that I shouldn't expect to be as hairy as other guys (not a huge deal, but just another part of CF). Knowing I won't be able to grow to be the man I want to be hurts, which is just part of the problem. With me hardly able to take care of myself, it's even harder to take care of someone else. As I said before, in my mind, the guy takes care of the girl. Of course they're supposed to care for each other, but just in general. It puts me in a spot where once again, I feel so vulnerable and helpless. I don't want people to have to take care of me; I don't want to feel like a burden.
When the day comes and I'm up on the altar saying my vows, the words "in sickness and in health" will mean so much more to my wife and me than it does to most couples. In that way, I know I can really relate to Anna and JC. I know my wife will be more than amazing and help care for me, but I want to be as independent as possible.
I understand that "masculinity" is a social standard for men, and it's all arbitrary, really, but in general, CF really prohibits me from becoming a typical man. From physically not being able to grow hair to having people take care of me, CF finds so many ways to make my life harder. Luckily, I've gotten used to it, and I'm learning how to make it easier any way I can.
