The Perks of Cystic Fibrosis

Jeph, certainly there aren't any perks of having a life-threatening disease, are there?!
Why, yes, reader, there are, in fact, a few perks of having this disease. Maybe not many, but I'll take what I can get. 

I get to eat a lot
Yeah, baby. My parents have been trying to get me to eat anything since I can remember. They practically forced me to eat ice cream and fatty foods as a kid. I mean, how much can that suck?! Realistically, it does suck because despite eating so much, I barely gain weight (Jeph, that's just another perk! No, it's really not). I really do struggle with weight gain, which is why I have to eat so much, but I do love my food! Especially when my dad lets me get pretty much anything at the store to bring back to college. Because I have CF, I have to eat a lot, so yeah, it's not terrible. Unless I have those days when I'm just not hungry. Those suck. My sister Anna portrayed this really well in one of her blogs, which I didn't realize existed until maybe a year or two ago. (The first paragraph is what I'm talking about, but the whole blog is good so don't stop there.)

I went to HAWAII
In October of 2013, my older sister, three younger siblings, parents, and I went on a week-long vacation to Hawaii thanks to Make-A-Wish. It. was. AWESOME. We would never have been able to afford a trip like that without Make-A-Wish and my CF. Even if I didn't have CF, we still wouldn't have been able to, and I probably never would have gone. However, I do have CF, and although I do hate using CF to my advantage, I did in this case and I don't regret it. In Hawaii, I made so many memories with my family and I have that to hold on to forever. The Make-A-Wish foundation is one of the greatest foundations out there for people with life-threatening illnesses and it does so many great things, not medically, but emotionally and spiritually, for patients and families who suffer.

Hospital Prom!
How many people get to say they had prom in a hospital...twice? Yeah, it doesn't sound great. It wasn't great, but it was still a perk, I'd say. If you didn't know somehow, I missed my junior and senior prom, and my social worker and dietitian threw me a hospital prom. While the conditions weren't great, it was so memorable, and like Hawaii, it wouldn't have happened without me having cystic fibrosis. My girlfriend, Noelle, even got to ride in a limo to the hospital and we got Olive Garden catered, so, yeah, it was a good night. :) A year later, the same thing happened, but I asked the staff to keep it low-key. They respected this, but Noelle still surprised me with decorations and we dressed up for some pictures. While I had to watch my proms happen through pictures and videos from a hospital bed, I had my own unique experience while everyone else had a pretty normal, maybe even bland prom. ;)

I get my own room in college
Forget about having to worry about roommates. Oh yeah, and I have my own bathroom in my room. AND I get this room next year. How great is that?! Anna had a similar situation when she went to college, and I'm so glad I get this set up. It makes it so much easier for me to do my treatments without disturbing a roommate or making them feel uncomfortable. I have more room to store my medicines, and I just have less of a chance of getting sick because I'm not actually living with someone. So, while it looks awesome and like I'm bragging about it (okay, I might be a little), it is kind of necessary for me and any potential roommates (shout-out to Parker who was supposed to be my roommate until I rejected him).

I am more sympathetic
Okay, these next two points may seem like I'm kind of building myself up and saying "hey look how good of a person I am!" but I truly believe these things. Having a chronic illness makes you suffer. With CF, I cough all the time, I'm pretty much constantly tired, my lungs are sore a lot, and there's a lot of medicines and routines I have to do, not including my school schedule. No, this isn't a pity party, and I'm not trying to make you feel bad for me, but it's just the truth. That being said, because of everything I experience, I understand what others go through and can appreciate it when they feel sick or tired or whatever the case may be. A lot of people complain about others complaining, because "you have it so much worse!" or "I've been through worse. That's nothing." But that doesn't matter. Pain and suffering aren't objective. Just because you have a cough doesn't mean you can't complain around me because I always cough. You're not used to it! It may actually be worse than mine at the time, so yeah, you might have it worse. Just because someone might have it worse doesn't mean you can't have it bad. It's like saying you can't be happy because someone else is happier. It doesn't make sense. So, with my CF, I am more sensitive to people's problems, even if they're not physical ailments. I've been through a lot, and even if I haven't been through what you're going through doesn't mean I don't have sympathy for you. Life is hard. For everyone. I like to think that I can see multiple perspectives and possibilities, like why someone might be late, or is on their phone in church, or crying in the middle of class. Maybe they slept late, but maybe they had to stop to help someone who is struggling. Maybe the person on their phone is talking to their girlfriend, but maybe they have a loved one in the hospital and are looking for updates. Maybe the person crying doesn't understand the material and is stressing for the test, but maybe someone they know just died. There are a lot of possibilities in any situation, and sometimes they're not always the most ideal. I'm always open to talk or listen to those who need it.

I'm overall more positive
Similar to the last point, I am just overall happier in life. I've grown to realize life is short and not a lot of things we think are important really aren't. With my cystic fibrosis, I've seen this first hand. My sister died from CF at the young age of 23. I've been hospitalized for two proms. I miss a ton of homework and tests in the hospital. At the end of the day, they don't add up to that much. I've learned to put my real priorities first, because I want to be happy. I don't want to do what I have to do. I want other people to be happy, too. I do what I can when people aren't. I try to be positive and optimistic, looking at all possibilities and choices. I'm hopeful. As depressing as it might sound, we're all going to die. And the things that matter now may not matter when we're dead. The happiness and positivity that we spread will matter, however, and my goal in life is to spread as much as possible.



So, yeah. CF has its perks. Not a ton, but they're there. And I'll take them. With chronic illnesses, there is a lot to be depressed about. There's a ton of stress, medicines, doctor appointments, hospitalizations, coughing, and treatments. It's hard, but these things make it easier to live with. Cystic fibrosis sucks, but my life, despite it, doesn't.

Why I love underdogs

So there's this video going around starring this girl, Claire Wineland, who "uses her positive attitude and social media to normalize death." Watch it really quickly, then come back and read the rest.

Done? Cool. Okay, so Claire has some pretty good points, and her Youtube videos aren't that bad, actually. I enjoy them a lot. Claire, in this video, covers the very uncomfortable yet very real topic of death. I like that. People pussyfoot around death so much and they try to make themselves, or me, forget that CF comes with that very real possibility. However, the problem I have with Claire's video, and the reason I won't share it (besides on here, but I don't know if that actually counts) is because she makes it seem like death is the only thing on her mind, and the only thing CF means. To her (I'm interpreting, of course), having CF is being given a death sentence and forces you to live almost hopelessly. Even without CF, she sees everyone's death sentence. To her, just because she has CF doesn't mean she's the only one who is going to die.
To me, Claire is giving up.
Claire is accepting the fact that CF will kill her. That's a crappy way to live.
As cheesy as it sounds, I have CF, but CF doesn't have me. Thinking that CF will be the ultimate killer and going through life accepting that CF "ends in death" is surrendering to cystic fibrosis, allowing it to take over and define and control you.

To me, that'd be too easy.

It's like David and Goliath. The 1980 US Men's Olympic hockey team. The tortoise and the hare (but not the rematch. Yikes the tortoise gets his butt kicked). Everyone loves a good underdog story. I don't want CF to kill me, not because I don't want to die young, but because it's just too easy. It's too obvious and too predictable. I don't care if I live to be 85 with grand kids and great grand kids or 20 and not even halfway done with college. I'd rather die in a car crash tomorrow than die at 80 from CF. I do not want my cause of death to be what the doctors expect. What my family and friends expect. What my body expects. I was born in 1997 and was given a curse. It was a death sentence, sure, Claire, but I'm doing my time and plan on getting out early on account of good behavior and I'll be on probation. That's a weird, probably faulty analogy but you get the idea. Just because I have a life-threatening, terminal illness doesn't mean that CF "ends in death." What a pessimistic way of looking at life. Dangit, scientists and doctors are getting so freaking close to finding a cure, I am so confident that although I may not be cured of CF by the time I die, I will be so healthy despite my CF that it will be practically scientifically impossible for CF to kill me.
I'd rather die in like a car crash or obesity. (lol can you imagine?)

This whole death thing really hits home. As I've mentioned in previous blogs, I have a tough family history in terms of dying from terminal diseases. The suckiest thing is, my friends, my girlfriend, and, worst of all, my nieces and nephews know that and think about it way too much. My nieces and nephews say things all the time about how Anna had CF and died and that I also have CF and my lungs aren't healthy. Imagine hearing essentially a death sentence from a three year old, even though to them they're just stating facts and don't think anything of it.
The potential of death from cystic fibrosis also ruins the mood on multiple occasions with my friends. Noelle, the biggest supporter in my life, still struggles with the thought of losing me too early. Sometimes I will just casually bring up the idea (don't ask me how, because I honestly don't know. It just happens.) and I have to comfort her because it brings tears to her eyes. I try to make it better by trying to convince her that she or I could die any day we get in the car or something, though I don't think that is very effective. I think that's what Claire is trying to do in the video, but more pessimistically.
My new friends at Morris are still learning about my CF and all it entails. Again, in previous blogs  the topic of conversation has been the difficulty in finding people who will accept me and my CF. When my friend, Parker (who wanted to be mentioned by name here) made a light joke (something I do a lot and honestly welcome) about CF, the room just kind of went silent and everyone said they just felt sad then and they all felt bad. We were having a great time and then my CF and potential death came up and it ruined the mood. This is why I make jokes sometimes about my CF. I need to be able to laugh at myself and lighten up the seriousness people surround CF and death with, or I will live my whole life completely depressed. Trust me, it's happened. I've found things that work well for me, and that includes joking and just being open about it. I love talking about my CF and answering questions about it because I don't want people to feel uncomfortable around me or anything. So, Parker, or anyone reading this for that matter, please ask me questions. I will not bring it up on my own because I don't like pity parties, but I love informing people.

I appreciate Claire's attempt at normalizing death. I think it's very important for people to understand that yes, we will all die, and no, we don't know how or when. That includes me and all people with any disease. It shouldn't be different talking about death with me than it is with someone without a disease. The difference between Claire and me, however, is that she expects CF to kill her. I can't stand the thought of it killing me. I want to be David, slinging a bunch of rocks and defeating a giant. I want to be Herb Brooks, winning an impossible hockey game for the gold. I want to be the tortoise, so focused on the ultimate goal (living) that he doesn't let even the fastest, most threatening opponent (CF) intimidate him. I want to be an underdog. Because those are the best stories. And dying from cystic fibrosis would just make my story boring.

Be care-free, not careless

It's like YOLO, but safer. It's become my life motto and since I've been to college it's really become an important part of my life.
I've learned in the past year or so, and have had it drilled in my head in the past few months, that mental health is yet another thing affected by cystic fibrosis. I've had (again, many times before but a plethora of times since August) countless existential crises, along with increased bouts of depression and anxiety. These include, but are not limited to, questions about why I exist (obviously), questions about why I have CF, doubting the importance of minute things such as homework when in the grand scheme of life it is meaningless, and why I worry so much about life.
These crises have put me through hell at night, keeping me up until 2 or 3 in the morning, causing me to text Noelle, call my sisters, or write all of my thoughts out on paper. However, I've found that they haven't been totally bad. Because of these instances of mental crises, I've developed the aforementioned (I  love that word) phrase. I repeat it countless times, to myself, to others, and, probably most of all, to my girlfriend, Noelle, when I go on my rants which occur probably 65 times a day. Sorry, Noelle.
So, to me, here is the difference between care-free and careless, and why this motto has made such a huge impact on how I see life.

Care-free

Being care-free, to me, means not stressing. Now, of course, regardless of how care-free you are, stress is inevitable, but the idea is to minimize it and make it positive. For example, I get stressed with the insane amount of homework I have. Instead of carrying that stress on my shoulders and letting it get to me, I decide that homework isn't worth a mental breakdown, and that it really isn't worth anything. Life is too short to stress. What does homework mean in the long run? No, I'm not saying don't ever do your homework, because you can find some good stuff in there. For example, I read Walden by Thoreau and The Legend of Sleepy Hollow by Irving because they were assigned to me. I Thoreau-ly enjoyed them and if I hadn't done my homework, I probably wouldn't have ever read them. Instead, what I'm suggesting, is that if you have so much homework to the point where it's bringing you down and taking over your life, you need to step back, evaluate what's important and what you can probably do without, do the important stuff, then go watch Netflix or enjoy college. 

Being care-free also means doing what you want to do, like watch Netflix or take a nap. I chose to go to college for a few reasons, the main one obviously being furthering my education, but I also chose for the experience. I've heard many good things about college and wanted those experiences to myself. If I'm in my room at 3:00 on a Wednesday afternoon and my friends are going somewhere or it's just absolutely beautiful outside, you can bet I'm not going to be doing homework. Why waste four years of your life doing homework constantly? There are so many opportunities on any college campus, and it's my job to find out what they are and to take advantage of them. That's why I started my very own speech team! I've been dedicating a good amount of my time to doing that because I enjoy it. There are times I choose to write my speech or do research for it rather than do my Spanish homework, simply because to me Spanish comes fairly easily and it's just boring. My life is too short to be boring (anyone's is, that is not referencing my CF). 

Careless

There is a fine line between these two, and I don't usually like to walk it but I sometimes guiltily find myself doing so once in a while. To me, being careless is, well, not caring. At all. It's going to college not to further my education, but to only do stuff I want to do. I do, in fact, want to actually learn things, which is why I'm paying to be here. If I were careless, I'd be spending money to be here and getting drunk, skipping class, and doing who knows what else. I know of a few people here on campus who are pretty careless. They waste their weekends away getting drunk every weekend and not remembering it the next day. Some people go home every single weekend to see their family or their boyfriend instead of meeting new people and making new memories here. That's careless, to me.



I do worry sometimes that people may see me as careless, and as a depressed kid who is hopeless and such. Well, in fact, it's quite the opposite. I'm very hopeful, which is why I do what I do. I'm hopeful that I'll get a job that I want, instead of a 9-5 office job that requires me 5 days a week. I don't want to spend my life working. I'm trying to detach myself from money, because, as cliche as it sounds, money doesn't buy happiness. And that's all I really want. I want to be happy. I want to do what I want to do, and if that means reading Sherlock Holmes instead of The House of the Seven Gables, well, I'll do it. In fact, I have been. I'm still reading, but I'm reading something I want to. I don't see the harm in that.

I just think that my life, as well as everyone's, is too short. Not to get too existential and crap, but we really have created this society that tells us we need to go to college and get As and get a 6 figure-paying job that doesn't allow us to see our families because money runs our lives and blah blah blah. Honestly, though, if you think about it, what does it mean? I want to travel, I'd like to have a decent house (though I really don't care too much; I'm going to be eating and sleeping in it, so who cares what it looks like), and I know that those things require money. I'm not dumb. I'm not throwing away my education and going to get a job as a Cub cashier for the rest of my life. But if I like being a cashier, why shouldn't I be?

These thoughts have really been emphasized since I've gotten to college, and I'd attribute it indirectly to my CF and directly to my mental health. I just want to be happy and healthy, and I'll do whatever it takes to get me to be there. I think we're all caught up sometimes in the frivolous things in our lives, the material goods and the tangible valuables that we don't consider what actually passes on to the next life (which is in itself a different discussion, but has some strong connections to this one). CF sure doesn't make me happy, but being sad about it doesn't either. 

Cystic Fibrosis and College Feelings (CFx2)

I am officially settled in at the University of Minnesota Morris to study English. Going to college of course is an extremely exciting yet terrifying moment in anyone's life, myself not being an exception. However, having a chronic lung disease makes the thought of college overwhelmingly scary and dangerous.
I've had some practice being on my own in terms of taking care of myself, but not to the extent I am experiencing at Morris. Hospital visits and mom and dad stepping back have given me a glimpse into the life I would take on in college and beyond, but now that I am here, it is much different than I had expected. One of the biggest things I've noticed that gets in my way is time. It's not even that I don't have enough of it, but rather I lose track of it. 3:00 (the time I usually do a treatment) doesn't feel like 3:00 anymore. I think this is because school. fun, and living have all combined into one, rather than being separate, indicating the time and when I should do certain things, like treatments or setting up my feedings.
It's weird to live in the same place where I go to school. I've always been relatively open about my CF, but now that I have people living only a few feet away across the hall, I am even more open about it. It's hard to hide the fact that I have my own bathroom!
As I've talked about in my other blogs, my CF plays a big role in my friends and the people with whom I interact. This past week has proved to be a bit of a struggle because it's hard to open up about a topic so large with people I am just meeting. The other thing that has actually proved to be challenging is meeting people in the first place. It seems as if everyone already knows everyone else. I suppose it helps that they have a roommate, where I'm all alone in my dorm. I already feel behind in some sense.

One of the things I'm most nervous about now that I'm here is being organized and maintaining my health. I must thank my doctors for pouncing on me a week before I left, causing me to gain 8 pounds and a 5-6% lung function increase, however, despite meticulously planning my health schedule, it's proven to be harder than I expected. I haven't gotten sicker yet, but I've noticed that I've forgotten already to do my feedings every single night due to simply staying out and getting used to the college atmosphere. I intend to be an active member of the Morris college community; I already auditioned and made it into the orchestra, and I've gone to Ultimate Frisbee Club. Additionally, I plan on trying Swing Dance club and playing a lot of pool in the lounge. Unfortunately, with all of these things comes great risk and more diligence on my part in terms of my health. It doesn't mean I can't do it, but that I have to work harder. Here at Morris I feel like I can really relate to The Barenaked Ladie's hit song, "Grade 9." Give it a listen, you'll understand.

With the health scare that my doctors put into me only a few weeks ago, I seriously reconsidered doing anything besides my treatments and feedings. It's times like these that I really need Anna (not to say I don't normally, but you know). She did it all and had a great time in college. I can still learn from her, though not directly. I know she got sick more often than ideal in college, and my doctors, family, and friends have made it clear that that really hurt her. I need to work hard to stay healthy, because if I don't then I can't have any fun at all. Luckily for me, my girlfriend Noelle is at Morris too, and she has been kicking my butt. Sometimes she even helps set up my feedings, which is a tremendous help. It's really hard not having Anna for advice, support, and understanding, but Noelle has stepped in as best as she can to help.

Noelle and me on the first day of college!

This is really only the first step to the rest of my life. I've realized that while yes, college is a hard transition, especially with my CF, its a necessary one, because after this, I won't be going back to mom and dad's, I'll be going to my own home, responsible for myself forever. College is scary but so exciting and even though I have CF, I plan on making the most of it, just like the rest of my life.

My family's history isn't my own

"Oliver is really worried about you going into the hospital," my brother, Kendrick, told me last Monday. 

With the recent passing of my nephew Emerson, and losing my sister Anna to CF just under two years ago, the concept of death (something which I've never encountered until Anna's) has entered my life and seems here to stay. Unfortunately, it hasn't only affected me and the older, more mature people in my family. Both Anna's and Emerson's deaths have made their own impressions on my nieces and nephews, children who are much too young to have experienced two deaths already. 

As mentioned, I was fortunate to avoid the heartache death brings until late my sophomore year, while these kids have already been through the pain twice. Both Anna and Emerson passed away from a chronic illness, and both in the hospital. And now, with my impeccable timing, I am in the hospital due to my CF right after Emerson's funeral. It only makes sense for the kids to be worried about me; it's easy for them to associate hospitals (and if they're old enough to understand that I have a disease, then that, too) with death. Maybe not even death, but just bad connotations. 

I don't want this. Not at all.

At Anna's wake, my uncle Blaine took me aside, and as we walked down Coon Rapids Boulevard, Cokes in hand, he made a point to tell me, to really emphasize to me, that Anna's history isn't mine. Her ending isn't mine. Seeing her die like that no doubt had its affect on me, but that doesn't mean that would happen to me. And I knew that. Despite seeing CF take her much too soon, I've still dreamed of my own future, past 23, as a dad, as a grandparent. I know that I still have a chance. Her story isn't mine.

My nephews and nieces, on the other hand, can't comprehend that. 

So what do I say to them? How do I, or their parents, convince them that I'm okay?
How do I convince not only my nephews and nieces that I'm okay, but their parents, my friends, everyone?
I completely understand where everyone is coming from when they say they care about me and want the best for me. They worry about me. But they shouldn't (in fact, I wrote a blog about this exact topic here. It is relatively similar, but read on). If you take one look at the past two years, it's hard not to worry and to care. 

But just because I'm temporarily sick doesn't mean that's it for me. Yeah, yeah, I'm always "sick", and I never can take a break from it, but the times when I'm extra sick, I still am doing pretty well. This isn't to minimize my illness; every time I go into the hospital I do lose a little bit of ground, which is something that my doctors have stressed greatly, but it is nowhere near the caliber of sickness that would take me down to the ICU, where the bad things happen.

One of the many Climb for a Cures Anna and I did

It is so very hard to express my thoughts on this topic. I want to allow people to care and to worry, but at the same time, I want to be me. I don't want to be constantly reminded of my CF from others, because trust me, I already am from my body. I don't want to be given special treatment. I want other people to have hope for me, rather than worrying. I want to be good and healthy enough for people to be confident in me and to not have to worry. I suppose that means there's a lot on my side to take care of; I have to take care of myself and maintain my health.

It depresses me to think people want to take pictures and videos of/with me because I might die at anytime from CF and they want those memories. Why can't we just have those memories, still captured, because they're great memories? Why do we need to put a reason behind it? 

Emerson and me napping

So how do you explain to a kid that their uncle Jeph isn't going to die just because he has CF and is in the hospital? It's one thing to build up older, mature family members' confidence, but that of a five year old? I suppose you just have to prove it to them. 
I need to strive to be better, to be healthier, not only for myself, but for my family members, because as much as CF affects me, CF also affects each and every one of my loved ones. 
Through these two premature deaths, I've learned that my family members' histories aren't my own, which means that I have a great future in store for me. 

I'm not like other guys

I'm just going to get right to the point: CF makes me vulnerable. I feel weak, useless, needy. In a world of very sensitive social justice-ers, I probably wouldn't be able to say CF takes away my manhood because of gender roles/stereotypes, etc. But in reality, that is what CF does. Oftentimes, I find myself distanced in my manhood than even my little brother, and without doubt my cystic fibrosis contributes to that.
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.

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.

My CF Buddy

It has  been a year since my sister, Anna, died from CF. In this past year, I tried to put on a neutral face as people asked if I was okay. I didn't quite understand the question; I knew they were asking because I have CF and her death might have affected me more/in a different way than other people. I shrugged it off and said I was fine; I said I was sad like everyone else. And for a while, that was true. I didn't think of how Anna's death might have impacted me personally, but as the months dragged on, I realized not having my CF buddy to always go to impacted me more than I thought.

I need Anna. I didn't realize that until it was too late. You never know what you have until it's gone, huh?
I hate that, but it's so true. We take everything for granted and all of a sudden, it's gone...
After Anna's death, I played it off cool. Of course I cried, I mourned, and I missed her. I still do. But after a month, I created this blog, and I don't think it's a coincidence that I did after her passing.
With Anna being gone, I needed to get out my thoughts some other way. So I created this blog to explain my disease and give people an inside view to My life with CF. The thing is, I created this blog to get out my thoughts before I even realized I needed to get out my thoughts. I started doing my own little therapy without knowing it.
Anna was there for me whenever I needed to complain, vent, or rant about CF, and she always provided her valuable insight and experience. She could easily empathize which made her so easy to talk to for me. But now I don't have her, and I regret not talking to her about CF more. There have been so many things, as seen in this blog and even not mentioned here, that I've wanted to tell her about, ask questions about, or just talk about. I've had scary moments, exciting ones, and some that we could have shared.

After Anna died, I went out to the CF community. Again, this was very subconscious; obviously I knew I was doing it but I didn't know why. I thought I just wanted to be involved with more people who are like me. The truth is, however, that I was looking for a replacement. I needed someone else to talk to with CF. Turning to Facebook, I was faced with two options: various CF Facebook groups, and someone whom I met through a CF social media type of thing, who also lives in Minnesota.
Both worked for a little bit. The Facebook groups provided me with countless people to talk to for anything. However, after a while, I noticed most of the groups seemed to make me depressed, as people would post things about their low lung functions, their fellow CF-ers who died, and about their depression and life. I understand and respect that we all have bad days, and people with CF do suffer from depression and low lung functions, but I was surrounding myself with the negativity and depression which only made the grieving process worse.

I turned to my friend, whom I will keep unnamed here. I still occasionally talk to her, but not as extensively. While we did have great talks about CF, we couldn't totally empathize with each other; we have different situations, as she (overall) is healthier than I am and we're same age, so she had less experience than Anna. Again, nothing bad about talking to her, only that I couldn't replace her with Anna.

That's when I realized that nothing and no one can. Anna was such an amazing inspiration that still to this day encourages me and keeps me going. I've learned so much from her, CF-wise and life-wise. I've learned not to take things so seriously, and to laugh at everything, especially yourself. And most of all, I've learned to see the beauty in the world.

This past year has been crazy to say the least. There has been so much that's happened to me CF-wise that I so wish Anna would be here to see. I remember the day after I got out of the hospital last May (2014), I went to visit her for the first time in the ICU, and I told her I would probably be getting a port. She was unable to visibly show her reaction, and although she tried to talk, it was hard to make out what she said. I explained that the docs had trouble placing my last PICC and it would likely be the last one I had.
I really wanted Anna to be there for me when I got my port. She talked about it a few times, and even though she never had one, I felt like she would've been able to empathize with me and maybe even answer questions. And maybe we could have even reversed roles and I could have told her what it's like to have a port. I could have comforted her and explained what it'll feel like.

I also got hospitalized twice this school year, which is rather a rare occurrence for me. (Usually once a school year is normal). Having Anna to talk to about hospitalizations was always nice. We'd talk about the nurses, or some specific doctors who shall not be named, and sometimes she'd even visit. While these hospitalizations without Anna didn't have a drastic affect on me, it just felt different, and I missed her comfort.
This past April when I was in the hospital, I had prom, which was also highlighted in my most recent blog. I know she would have liked seeing that; Anna was always very opinionated about the caretakers, including doctors, nurses, and the social worker/dietician. I'm sure she would have been there to help and maybe even plan, and I know that she would have definitely appreciated this particular set of caregivers.

Another big thing that happened was me getting my pump, which is a different story for a different blog which I probably won't write. In short, I got a pump for my diabetes.
Anna had a pump, and I had a TON of questions about it. My pump is different from what she had, but the questions overall were pretty generic. I have a friend who has diabetes, so I could go to her for some things, but again, it just wasn't the same. I appreciated the help, but I needed my sister. My CF buddy.

Lately, the CF world has had extraordinary breakthroughs. Everyday, we are getting closer to finding a cure. A new medicine was introduced this past year to help target the underlying causes of CF and slow down any infections and whatnot. In July, the FDA will hopefully approve of it and hopefully it will be sent out for us to use. It's bittersweet; of course it's a good thing for CF patients with our particular mutation, but it's sad to think how close we were; how close Anna was to staying alive for even longer.

The Climb for a Cure team this year was the biggest one I've been a part of ever, and granted it was in honor of Anna, the Climb had always been an "us" thing. We'd always do it together, and fortunately we got to do it one last time before she entered the hospital in 2014. I loved doing the Climb in honor of Anna, but it was definitely different. It was our thing, and without her, just like many, many things, it simply wasn't the same.
Last year at the Climb, I remember we sat at the top of the stairs waiting for our group to come. She was on her iPad, and she kept making weird, random noises and "cacaw-ing" to see if they were close. We wandered around the top of the IDS together and we spotted a picture of me catching and later one of her and JC, her husband, on their wedding day. We both were very excited to see our lives being snap-shotted and shown off to the CF world.

The 2014 Climb for a Cure team

Anna and I also connected movie-wise. Two big movies come to mind when I think of Anna: Jurassic Park and The Master of Disguise. Both brought us together, but the latter definitely connected us. We could hold a real conversation using only Dana Carvey quotes, whether it be over text or in person. One time, she just randomly texted me with a quote from The Master of Disguise and I, without even questioning it, replied with another one. After a few quotes, I asked if she was watching it and then she replied with "No, I just thought of it. We're actually on our way over right now." That kind of explained our relationship: random, weird, but we went with the flow. We played off of each other and it was awesome. I've yet to watch The Master of Disguise since her death. I'm afraid I'll just be tempted to reach for my phone to text her. Maybe one day I'll be able to bring myself to do it.

I miss Anna a lot. Way more than I thought I would. For the first few months, I was in denial. I knew I missed her but I didn't know that it was because she was my CF buddy, I thought I missed her because she was my sister., But Anna was way more than that. Anna was a friend, a listener, a shoulder, a child-at-heart, and most of all, Anna was, and still is, an inspiration.

Vest (best) buddies