Well, I finally transitioned. Last week, I had my first adult CF appointment. For those who are unfamiliar, for the first 18 years (or so) of a CF-er's life, they see a pediatric CF doctor, and when they're ready, usually after their first year of college, they make the move and see a new team: new doctors, new social workers, new dietitians, and a new building.
It's freaky.
Deep down, I know nothing really has changed. But I think it's symbolic. I am now truly, fully responsible for my health and my future. I make the appointments, I choose my treatment plan, I order and pay for prescriptions, and I do it by myself. This is not to say I'm alone in my taking care of my CF; Noelle of course is a HUGE help, and I know my parents and family are more than happy to step in and help when needed. But again, it's just symbolic. I'm an adult now. This is on me.
None of this is really new, though. For 2 or 3 years now I've been doing most of this already, so it's not like I'm doing it all for the first time, but when you have to go to a completely new building and have no idea where to go, when you have to meet new people and don't even know what they look like, and have to explain to them every detail of your medical history (without forgetting anything) so that they can properly treat you, it can be very scary and overwhelming.
Which is why I needed Anna. You thought you could get away with reading a blog post and not read about Anna, didn't you? Just remember why I started this blog.
But seriously. This is the PERFECT example of me going to Anna, asking her where to go, what doctor I should see, what they're like, what to expect, or anything else! There were SO many questions I had, and absolutely zero got answered (I mean, eventually they did, but the hard and scary way).
I saw Anna's old doctor, Dr. Billings. She's great. At the adult clinic, there are like 6 CF doctors you can see, and being an adult, you get to choose whom you see!!! I went with Billings because she knew Anna, Anna talked about her a lot, JC had good things to say, and I'd feel at least a little bit more comfortable around her. I was right.
We hit it off right away and shared a lot of laughs (she asked if I was sexually active, which I'm not. However, I thought she asked if I was socially active, so, naturally, I cheerfully answered "yup!" And she asked how many partners and I was like "woahh I totally misheard you. Yeah I'm not sexually active." and she responded, "hey, I'm not judging!" and it was great).
The appointment itself was weird. It was a mix of her getting to know me personally and from a medical history point of view, but unfortunately, my lung functions weren't great so she also had some immediate treatment to give. We had to balance getting to know each other and having fun with being serious about what to do with my health. I feel like the first few appointments will go this way; this sucks because I want to study abroad early next summer but I don't want her signing off on me going if she doesn't totally know me and my health like my other doctor did (she was my doctor for like, 10 years, so she really knew me and my lungs and my health). I'm stuck between wanting to continue living and transitioning to adulthood and not doing anything in order to stay healthy. I don't know, it's weird.
Overall, I don't know if I'd say I'm excited to transition. I loved my pediatric team and let's be honest, nobody really likes change. Again, they knew me so well and I knew them, too. These are totally new people and I have to start all over from scratch while maintaining my health. I'm glad I have Dr. Billings, mainly because of Anna, so at least she has some sort of idea of what to expect (though not totally, because there are a lot of factors there).
This is the start of my adult life with CF. I won't have my mom (or dad, because he gets all the recognition) to take me to appointments, admit me into the hospital, order medicine for me, or anything else. I'm responsible from here on out, which is terrifying. I'm not going to pussyfoot: I think it's going to be a lot easier to get sick and to die at this point. I'm responsible for my own life and if I screw up, if I don't put it first and give it the attention it needs, then it will be much shorter than I'd like it to be. I need to step up and take care of myself, not just for me, but for Noelle, for my parents, for my nephews and nieces, my brothers and sisters, and my friends. I know they're all willing to help, I have no doubt, but at the end of the day, it's my disease, my health, and my responsibility. Being adult means taking on a lot of responsibilities, and being an adult with CF means taking on much more serious responsibilities.
Monday, October 2, 2017
Wednesday, September 6, 2017
Make Loud Mistakes
This post isn't really a CF post, but I've shared some other life mottos on this blog and so I figured I could stray from the CF theme for one post and share another: Make Loud Mistakes.
I can't take credit for the origin of this phrase---that goes to my high school orchestra teacher, Mr. Watson---but I do take credit for taking the phrase and expanding it. Originally, Mr. Watson used it to help us spot the hard parts of music. If we made a mistake and we knew it, we knew what we needed to work on. If it was a quiet mistake, we might have thought it was just a slip-up or not even a mistake at all. The whole point was to improve our playing by knowing what we needed to improve.
Whenever I heard that phrase, it gave me courage. I knew Watson wouldn't be mad if I messed up; I was supposed to mess up in order to get better, and the whole point of his job was to make me get better. I was allowed to not be the best or the smartest and it was good, and even welcomed. I'd slide my bow across the strings of my violin and play the notes on the page, and I had fun doing so. Looking back on high school, I realize some of my fondest memories are from orchestra, where I was in a comfortable, welcoming environment, and Watson and his phrase helped create that for me.
In and since high school, I took that phrase out of the orchestra rehearsal room and applied it to everything. I realized I was in school to learn. If I knew everything about, well, everything, then I wouldn't need to go to school. That gave me the courage to ask more questions, answer more questions, and be wrong more. In college, still, I feel this way. I get intimated going into some of my English classes with upperclassmen who are much further along in their degrees, having taken more English classes and therefore knowing (generally) more than me, so when they raise their hands and are always right, I start to worry. Is English the right discipline for me? What am I doing in this grammar class? I have to take a step back and realize that I'm in this grammar class because I don't know it yet. I haven't read half of the books my peers have because I'm not even half way through my college career. I need to learn these things, which is why I'm here. By making loud mistakes, I can learn the material and better understand English.
I've also been able to apply this phrase outside of the classroom. Recently, I took up playing Dungeons and Dragons. There's a lot of information that comes with playing that game, and as a level 2 paladin, I know almost none of it. However, I don't pretend I do. I have to ask which dice is my D8 a lot, and where on my character sheet I can find my constitution (actually, that's a bad example; I happen to know that one). Either way, I don't know it, but I'll learn it.
Oftentimes, my friends will talk about something I don't know much about, and instead of laughing along to fit in, I'll stand back. I'll admit I've never heard of something, or that I don't listen to a type of music. Not only do I learn about more things (because if you just laugh along, you'll never learn about it because everyone will assume you know what they're talking about), but I stay true to myself. I reveal to my friends who I am and what I like and don't like. I don't pretend to like something to be popular or fit in; that's stupid and kind of immature. If I learn about something, I'll do it on my own terms, not in order to be friends with others or look good.
"Make Loud Mistakes" is a phrase that I've carried with me since about 10th grade. It's allowed me to be much more confident, not only in my musical talent, but in my every day life. I know that it's okay for me not to know everything, because nobody does. I can admit when I'm wrong and when I don't know something. By doing that, I can learn more about everything and I don't see that as a bad thing at all.
Mr. Watson's phrase that he nonchalantly threw around the orchestra room has been a major influence in my life, and I encourage you, too, to be humble, ask questions, learn new things, and to make loud mistakes.
I can't take credit for the origin of this phrase---that goes to my high school orchestra teacher, Mr. Watson---but I do take credit for taking the phrase and expanding it. Originally, Mr. Watson used it to help us spot the hard parts of music. If we made a mistake and we knew it, we knew what we needed to work on. If it was a quiet mistake, we might have thought it was just a slip-up or not even a mistake at all. The whole point was to improve our playing by knowing what we needed to improve.
Whenever I heard that phrase, it gave me courage. I knew Watson wouldn't be mad if I messed up; I was supposed to mess up in order to get better, and the whole point of his job was to make me get better. I was allowed to not be the best or the smartest and it was good, and even welcomed. I'd slide my bow across the strings of my violin and play the notes on the page, and I had fun doing so. Looking back on high school, I realize some of my fondest memories are from orchestra, where I was in a comfortable, welcoming environment, and Watson and his phrase helped create that for me.
In and since high school, I took that phrase out of the orchestra rehearsal room and applied it to everything. I realized I was in school to learn. If I knew everything about, well, everything, then I wouldn't need to go to school. That gave me the courage to ask more questions, answer more questions, and be wrong more. In college, still, I feel this way. I get intimated going into some of my English classes with upperclassmen who are much further along in their degrees, having taken more English classes and therefore knowing (generally) more than me, so when they raise their hands and are always right, I start to worry. Is English the right discipline for me? What am I doing in this grammar class? I have to take a step back and realize that I'm in this grammar class because I don't know it yet. I haven't read half of the books my peers have because I'm not even half way through my college career. I need to learn these things, which is why I'm here. By making loud mistakes, I can learn the material and better understand English.
I've also been able to apply this phrase outside of the classroom. Recently, I took up playing Dungeons and Dragons. There's a lot of information that comes with playing that game, and as a level 2 paladin, I know almost none of it. However, I don't pretend I do. I have to ask which dice is my D8 a lot, and where on my character sheet I can find my constitution (actually, that's a bad example; I happen to know that one). Either way, I don't know it, but I'll learn it.
Oftentimes, my friends will talk about something I don't know much about, and instead of laughing along to fit in, I'll stand back. I'll admit I've never heard of something, or that I don't listen to a type of music. Not only do I learn about more things (because if you just laugh along, you'll never learn about it because everyone will assume you know what they're talking about), but I stay true to myself. I reveal to my friends who I am and what I like and don't like. I don't pretend to like something to be popular or fit in; that's stupid and kind of immature. If I learn about something, I'll do it on my own terms, not in order to be friends with others or look good.
"Make Loud Mistakes" is a phrase that I've carried with me since about 10th grade. It's allowed me to be much more confident, not only in my musical talent, but in my every day life. I know that it's okay for me not to know everything, because nobody does. I can admit when I'm wrong and when I don't know something. By doing that, I can learn more about everything and I don't see that as a bad thing at all.
Mr. Watson's phrase that he nonchalantly threw around the orchestra room has been a major influence in my life, and I encourage you, too, to be humble, ask questions, learn new things, and to make loud mistakes.
Monday, May 8, 2017
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.
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.
Monday, January 23, 2017
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.
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.
Friday, November 18, 2016
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.
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.
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.
Sunday, August 28, 2016
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.
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.
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.
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.
Wednesday, April 6, 2016
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.
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?
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.
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.
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