An Ode to My Feeding Tube

 

One of the last pictures I could find before I got my feeding tube, circa 2004

About 18 years ago, I was in first grade. I was pretty much like any first grader; I enjoyed learning, my favorite sport was baseball, I spent a lot of time outside playing games and using my imagination. I liked superheroes, I had a lot of friends, I was curious. And I had a feeding tube. 

One of the first pictures I have of me with my tube, circa 2005

Getting my feeding tube was one of the first surgeries I ever had. If I’m being honest, I can’t really recall the emotions I felt as a first grader who learned they had to get a tube placed in their stomach. I wish I could say for certain that I was nervous or scared, but honestly, I don’t know if I even really knew what it was or what it meant. I suppose, in a way, I was fortunate not to realize that. Ignorance, in this case, was bliss. If the doctors or my parents would have told me that for the next 18 years of my life, I’d have this… thing sticking out of my stomach, I probably would have been pretty adverse to it. 

Like most kids who need surgery in first grade, sure I was probably scared and nervous. But I had a wonderful support system and I got the tube placed. In fact, I actually got to show it off for show and tell later in the year! (Thanks, Mrs. Birch, for humoring 7-year-old me.)

Now, at 25, it is hard to remember life without a feeding tube. 18 years is a long time, especially when that clock starts when you’re just 7 years old. I was too young to realize the magnitude of the surgery. Before that milestone in my life, I hadn’t really “needed” a flat stomach, if that makes sense. Except for the occasional slip and slide, I wasn’t diving headfirst into anything, I wasn’t thinking about what kind of contact sports I might want to play. I didn’t go off diving boards or ride waves in the ocean with a boogie board. I didn’t slide across ice or snow like a penguin. Because I was young. Those things hardly even crossed my mind, ever. 

But now, those things can cross my mind without being immediately dismissed. Not that I have a lot of opportunities to go on slip and slides, or dive headfirst into a base or off a diving board, or play contact sports or anything like that. But that’s not the point; the point is that now, I can do those things. 

Because after 18 years of having a feeding tube, I was recently able to remove it, for good. 

The last picture of me with my feeding tube!

My feeding tube has simply served its purpose. When it was placed 18 years ago, I was severely underweight, just as many CFers are. It enabled me to receive extra nutrition and calories when I slept overnight. I’d hook up my feeding tube to a machine that essentially fed me throughout the night, pumping me with something like an additional 1,000 - 2,000 calories while I slept. I didn’t have visions of sugar plums - I had visions of turkey feasts. 

The last time I remember using my feeding tube was right around April 2020, nearly three years ago. I actually think I might have used it once or twice between August and September of 2020, but even so, it's been a while. And, in fact, before April 2020, I rarely used my feeding tube. In college, my use was so sporadic, I’m sure it did help, but not to the extent it could have. 

Once again, thanks to a combination of my own motivation and dedication to my health, along with the miracle drug Trikafta, I have been able to shed more burdens and aspects of CF that have been so extremely foundational and instrumental in my life, for as long as I can remember. 

It is so strange to have this part of me now removed. I am flooded with emotions: excitement, relief, freedom, grief. I don’t remember life without a feeding tube. I have grown so accustomed to having it in. My body naturally protects my stomach when I am in crowds or close to bumping into a wall. My hands reach for the area after I jump in the water or take off a sweater. I can already feel the “phantom limb” taking effect; my mind and body expect the tube to be there, and I still am surprised when it’s not. 

After 18 years, my feeding tube has finally been removed for good.

Right now, I’m keeping some gauze over the site. When I took it out, there was no procedure, no stitching; my doctor said it should heal on its own and close up. So really, there’s just been a hole in my stomach for the last week, which has been kind of freaky. After I eat a meal, the site will sometimes leak a bit, but even that has reduced significantly. What’s going to be really weird is when I can take off the gauze and just have a plain, flat stomach. 

Other CFers have reported having their site heal up but leaving a deep scar — they’ve described it as basically having a second belly button. So the staring might not stop, but after 18 years, I’m used to it. What I do need to get used to is the freedom I’ll have. This summer, I definitely want to go on what I can only imagine is one of my first head-first dives into a slip and slide. I want to play baseball and steal second, sliding into the base with my arms outstretched. I want to play frisbee and layout for the disc. Maybe I’ll even try my hand at tackle football (probably not, but it won’t be because of my feeding tube!). 

My feeding tube and I have been through some stuff. There are at least 4 separate occasions that I can recall it falling out suddenly and me needing to quickly get it replaced, including once in the ocean and once at the local pool. Life is always exciting.

It’s going to take me some time to get used to this new body, for sure. My feeding tube has become such a familiar site and feeling for me. I am shedding a part of my life that I literally do not remember not having. But this is going to open up more opportunities for me, as well. And, just like everything else, it signifies the progress we are making toward a cure for CF. 

My new attachment: update!

 After seven years of having my port, I finally got it removed in April. My port was used mostly for IV antibiotics (or the odd miscellaneous infusions), but having not used it for 3+ years, my doctor determined that it had finally become obsolete. 

In fact, the last time I needed any antibiotics was in 2019. That was also the last year I went into the hospital, and in November of 2019, I started Trikafta, which has drastically changed my life. 

The day I got my port, August 2014

I don't think Trikafta is the only factor behind getting my port out, though. One major benefit, ironically, has been COVID. Masking and social distancing - surprise, surprise - has greatly helped keep me safe and healthy, not only from COVID but from all sorts of other infections. I've barely had colds in the last few years, let alone major illnesses. But I've also been more diligent and proactive in my health by myself. I've taken on the responsibilities of CF with everything I've got. I remember in 2019 I made it a personal goal to only go in the hospital once that year. Little did I know that'd be the last time I'd go in indefinitely. It hasn't been Trikafta doing all the work (though I admit it has done a lot of the heavy lifting). I've stepped up hard to make it happen. And I'm proud of the progress I've made.

It is a weird feeling having my port out. It was overwhelming getting it out. When I got it placed, it was just a few short months after Anna had died. I had told her about needing to get one. My port has gone through its entire lifespan since she died. 

Post-portum 

Before. Look how fat I am compared to 2014!

But it's also an amazing feeling to have it out. Sure, it doesn't necessarily feel much different, but the implications and general sense of having it out is incredible. My doctor and I have begun discussions to remove my feeding tube. I haven't used that in more than a year now, and I've gained between 6 - 10 pounds on my own in that time (in fact, my doctor used the word "moderation" with me for the first time ever!). While this step will take a bit more discussion and planning, it is amazing to be having the discussion in the first place. 

My port coming out isn't without its challenges, either. Of course, we don't know what Trikafta has in store for CF patients long-term. Theoretically, it should work forever and then some. But it doesn't mean I don't have CF. Needing antibiotics is still a very real possibility, and now that I don't have a port, my options are oral antibiotics or getting an IV or PICC. Hopefully oral antibiotics would do the trick, because my body was beginning to get used up in terms of getting PICC lines placed. It isn't impossible, and I can still technically get another port placed in the absolute worst-case scenario. But hopefully we don't even have to cross that bridge because we won't come to it. 

My CF updates seem to be happier and more hopeful every time, but with them I always need to remind myself that cystic fibrosis is a progressive disease and we simply don't have the data for how Trikafta affects patients long-term, or what "long-term" even means. I still have CF, and many patients around the world do and they don't necessarily have the ability to take Trikafta. With every celebration comes an important reminder and consideration that while it is good and important to hope and plan and look forward, it is even more important to stay present and know what is here for us today. For me today, that means enjoying not having a port anymore!

July 10, 2021

Anna died when she was 8,667 days old. As of July 10, 2021, I am older than my older sister. And while I wouldn't say I have survivor's guilt, it isn't fair that I am "older" than her, that I am living longer than she did.

I suppose it shouldn't mean anything that I am 8,668 days old and Anna only got to see 8,667 days. The average US life expectancy based on a quick Google search is right around 78 years, which is close to 28,400 days. Anna, in a sense, got 20,000 days of her life taken away from her. 

And yet, she didn't. Every day for Anna was an infinitude and every tomorrow was a dream. God gave her each day and Anna thanked Him with laughter and joy and sometimes anger and impatience and a whole personality words cannot describe. But Anna took each day as her own, and every day no matter what she put out, she rarely put out the fight she was fighting, and she fought that fight hard. 

I know, because I'm fighting it too. I'm just fighting it longer, and recently my fight has gotten easier. So, maybe in a sense, I do have survivor's guilt. I often think I'm not using my life the way I should be. I know we romanticize people when they die, but looking back I think Anna had a life to be proud of, and she did that in fewer days than I did. 

In a way, this odd celebration of life I am experiencing today feels like a midlife crisis, a crisis that is pushing me to be better, holier, happier, more loving and more care-free. I still look up to my late sister - she is still older than me, and the way I remember her makes her feel much older and wiser. I feel too young, too inexperienced to be 8,668 days old when I compare myself to Anna. I don't feel like I've done enough. 

 And that's the crazy thing. Anna was so young. I know that now. I keep asking myself, "What if I were dead now?" and that question is heavier than a harmless hypothetical. It is a very real possibility, the evidence being Anna herself. If I were dead now, what would my life be? What would my family say about me? What have I gotten to experience, what do I still want to do? I'm lucky enough to ask these questions. Anna did not really get any warnings. I've said in the past that I would be content with dying once I got married. To marry Noelle, the love of my life, was all I wanted to do. And I still think that is true. While I don't want to die, I would be content with it. But the point is, we don't get to decide that. If I died the day before my wedding day, I wouldn't have been able to negotiate with God. 

Today, I feel as though I am just starting my life. I graduated from college last year, I'm almost a year into my career and my marriage, I have a honeymoon planned, I hope to start a family one day, I hope to take road trips with said family and create holiday traditions and get promoted at work and see every major league baseball stadium, there is a possibility that I want to write a book, and I want to do so much more. 

But is that life? It may be living, but what is life? Because Anna had a life and when we reflect on it, we recognize she didn't get to do most of that stuff. I'm sure she had her own list of things to do, and how much did she cross off? And yet, Anna's life was beautiful. 

So while my life feels like it is just beginning, I recognize that it begun 8,668 days ago. And each day on this earth, whether you have a lung disease or not, is a blessing. And it doesn't matter what you get to do or not do, but how you live and think and pray and treat one another, that creates your life. 

So this, my 8,668th day on this planet, is dedicated to my older sister. She was strong, funny, animated, stubborn, messy, courageous and brave. And she lived.

Imposter Syndrome

Imposter syndrome (n): "A psychological condition that is characterized by persistent doubt concerning one's abilities or accomplishments accompanied by the fear of being exposed as a fraud despite evidence of one's ongoing success" (Merriam-Webster). 

Imposter syndrome is a common phenomenon, especially in the world of academia. Many people feel like they don't belong in the group - whether that is academic, athletic, or otherwise - because they don't always know what they're doing, or their success looks different than others, or at least it is perceived to be different. But what does having CF "successfully" look like? What does that mean? Coughing a bunch? Producing mucus when you cough, needing to take breaks while exercising more than your peers? Scheduling your entire life around doing treatments, waking up extra early to do them, or staying in the hospital, being on IV antibiotics, knowing your nurse's work schedule? Because if so... 

After being on Trikafta for 16 months, and having not been in the hospital for over two years(!!), and needing minimal antibiotic treatments (no IV antibiotics in 2 years), I feel... almost like I don't have cystic fibrosis anymore. Now, I say this to illustrate a point only. Obviously I still have CF; I have to go to doctor appointments, I still do two treatments a day, my weight gain still needs support from my feeding tube, and I still have to take medicines like enzymes, insulin, and of course, Trikafta. And it's this last one, Trikafta, that has changed everything about my life, from my energy levels to my lung functions to my mental state. After 22 years of living in a certain way, a way that constricted and forced and deprived and choked me, I feel like I can really breathe. 

Which makes me feel like an imposter in the best way possible. 

In the past two years, my energy levels have been higher than I knew possible (and I've just naturally been a highly energetic person). I'm always itching to go do something (COVID has been tough!. I feel like I'm dancing and singing around the house no matter what I'm doing, I've gone on 10+ mile bike rides, I can play racquetball without needing many breaks, and life has been (has always been, but is perhaps more so) amazing. Before taking Trikafta, I was able to do these things, but to a much lesser extent. I couldn't imagine going on a bike ride for more than maybe 1/2 hour. Racquetball hurt my lungs. I loved laughing but that much force coming from my body often caused me to cough. And when I coughed, always mucus. And usually thick, green mucus (green indicating infections/illnesses). Now? I honestly, really truly, cannot remember the last time I coughed up mucus. Maybe a few months ago? Maybe? I love not remembering that. On the rare occassions when I do produce anything, it's white and thin, more closely resembling spit than phlegm. 

The numerical data backs up my energy levels, as well. My PFTs have increased 30% since starting the medicine. They haven't been that high since 2014!! These numbers are incredible, and they only keep rising. And the changes in my everyday life is proof of how this medicine is making me feel "normal." Before Trikafta, I never missed a single treatment. I did three treatments every single day, without fail. Now I am able to do two treatments a day and sometimes, around once a month, I allow myself to miss a treatment (though I usually still do a quick nebulizer) if I've had a late night or something. That worried me at first, and I was cautious when skipping treatments, but this is exactly what Trikafta was for. To make my life easier. To make my life better. And it gets better each and every day, in all aspects.

A graph of my PFTs (lung function tests) from 2005 (left) to 2021 (right).
See the recent upward trend!

My mental state has changed in the past two years, as well. My life for the last 22 years has been consumed with cystic fibrosis. It was the only thing on my mind, and I made CF my life (or really, CF made itself my life!). I didn't have a choice but to focus on my health, how it would affect my future, my college experience, my married life, my work life, my social life, my activities, everything. In fact, before Trikafta - and before the pandemic - I was really nervous about entering the workforce, but the combination of Trikafta and COVID-19 forcing people to work from home, I've been able to reclaim even the mundane aspects of "normal" living, including the 9-5. I even started saving for retirement. That is something that has surprised me completely; so many times I've had the explicit (and rather freeing) thought of not having to worry about money in the future, because more likely than not that future wouldn't come. It's an incredible feeling being allowed to dream of taking out of my 401k. 

But I am guilty, too. Because CF isn't the only thing on my mind anymore, because it isn't my life, because I don't need to worry about if I'm going into the hospital or how I can squeeze in all my treatments today, or coughing excessively at work, I'm not talking about it as much. My disease isn't as serious anymore. I don't advocate like I used to, I don't blog as much, I don't seek out advice or videos or blogs from fellow CF-ers. I'm not as involved in the community and while it feels nice to be able to take a break from it, I feel bad. Because CF is still a very real disease. It is still serious. Not everyone in the CF population can take Trikafta. There are those who are still hurting, whose lives are still centered around taking that next breath. And it's those who I (and others!) need to advocate and pray for and support. And, more likely than not, I will still die prematurely, even though it may (God willing) be later than 40 like I've imagined my entire life. I can't forget that. I wouldn't say I'm letting my guard down necessarily, but I'm letting myself forget about CF. And that's what's so bittersweet about all this.

I don't want to get my hopes up. I don't want my loved ones to be so encouraged and then have to say goodbye before I retire. While Trikafta is a miracle, and one I am grateful for every time I eat a scoop of peanut butter in the morning, I can't forget why I'm taking it. Because I have cystic fibrosis. I do, and I am not an imposter. I may not be coughing as much, I am able to loosen the rigidity of my treatments, I don't seek out every opportunity to talk about the disease or advocate or post something new, and I am allowed to breathe and live. But the disease is still very real and I cannot forget that.

It has been a cheesy saying since the dawn of time that I still have CF, but I can finally, really truly say now, that CF does not have me.

We Should Have Been Working From Home A Long Time Ago

 I mean, the title says it all, really. 

Let me detail a timeline of events of my life to put this blog into better context:

1997: I was born with cystic fibrosis.

High school (2012-2016): My CF progressively got worse. That is just the nature of the disease. I was hospitalized numerous times, taking me out of school, forcing me to drop out of high school activities such as school plays and speech, and missing events such as prom and my cousin's confirmation. 

High school through most of college (2012-2019): I needed to wake up an hour earlier than my peers to do a vest treatment with nebulizers, as well as throw up and dry heave, due to the nature of my deteriorating lungs not cooperating with me in the mornings. I'd sit over buckets for 20 minutes every morning, waiting for the coughing and vomiting to stop.

I also had to find at least half an hour in the middle of the day to do another treatment to make sure my lungs stayed clear for the whole day.

Early college (2016-2018): The realization started setting in that I need to find a job that is flexible with my disease, where I can work part time from home, or I'd have to find somewhere where I could have a private room to do treatments, or not work full time, or have some sort of accommodation that would have been very hard to get, especially coming right out of college with nothing to prove I am a competent and skilled worker in my field. 

October 2019: Trikafta was approved. While I knew it was a good drug and was promising, I didn't know exactly what that meant for me.

November 22, 2019: I started Trikafta. In the weeks and months following, I learned what exactly it meant for me. My coughing and mucus production came to a halt. My energy levels soared, I was able to run and exercise more than I had ever before, I could start breathing more deeply than I thought possible, I was able to drop from doing three vest treatments a day to two (with talks of being able to drop down even more in the future), and life got infinitely better, with my CF just a second thought rather than the thing that was constantly on my mind.

2020: COVID-19 hit. People had to work from home. Everyone did! (I mean, almost everyone.) The world adapted to allow people to work from home without even thinking about it.

August 2020: I was able to enter the workforce, working almost 100% from home.

So now for the actual blog.

I lucked out with Trikafta. If that life-changing medicine hadn't been approved, I would have still had to look for a job that was flexible and able to be done from home. I would have been in the "Early college (2016-2018)" dilemma when I graduated college this May. I was worried about working because I coughed all day everyday, and I needed to do a treatment in the middle of the day. I knew that if I worked in an office, my coughing would be distracting for others and embarrassing for myself. I wasn't sure if it would be possible for me to do a treatment in the middle of the day. Not at my desk, certainly, which would've meant having to get a special room in the office for me to step out to do a treatment. And would that mean having to do a treatment over my lunch break?

These were the questions I pondered until I started Trikafta, and really it was once COVID hit that my questions were answered and my worries were relieved.

People who had disabilities without life-saving medicine, people with depression, anxiety, cancers, autism, and so many other disabilities, were still in that work-from-home dilemma, and COVID has really been a blessing in disguise.

It wasn't until COVID struck that the world realized how many people could work from home and do their jobs just as well (people can even start their jobs remotely and still be successful!). The world operated in an ablest way. The world wasn't able to see my perspective, or the perspective of other people with disabilities. (That's what privilege is, by the way. This blog is about having privilege, and it's a real thing. No further questions. Keep reading.)

We should have been working from home a long time ago. Apart from the capitalism aspects of it (which is another conversation for another day), the ableism aspects of working from home, or changing the work week from 5 day 9-5 workweek is something we should have considered not only for those of us with disabilities but for everyone. 

The only thing is, we started working from home when it affected everyone. Rarely were exceptions made before COVID. Working from home for someone with a disability, someone like myself or someone with extreme anxiety, is crucial. I know of people who cannot operate effectively in an office for 40 hours a week due to their mental illnesses. They are competent and smart but in order to work from home they had to prove themselves worthy. I couldn't work from home fresh out of college; I would have had to prove that I was competent enough to do the work before I could take it home. In fact, when I got my job out of school, I had to be in the office three days a week for the first two months while I was training. I still had to prove myself, and as a person with an underlying health condition during a pandemic, that was scary!

Luckily for me, Trikafta allowed me to do that. Others, who didn't receive a life-changing medicine, aren't so lucky. For many, it's work from home or don't work at all. And the world didn't operate like that before COVID, and it still doesn't totally work that way. But it needs to. 

Everyone deserves to work a full-time job if they want. Opportunities shouldn't be limited to someone because they have a disability. We cannot judge people's worth and value and give them fewer opportunities based on their abilities or disabilities. We need to be adaptable. That means helping people get a home office set up, giving them a computer, monitor, mouse, and even an office chair that allows them to be comfortable and able to work. 

My home office setup. Complete with my vest treatment and medicines!

This goes for working parents, too, especially working mothers who need to choose between giving up much-needed recovery and bonding time after having a child and keeping their job. Life isn't all about work, and yet we've made it about that. If you can't work, that's your fault and you need to figure it out. 

I can go on, going into welfare and the "free handouts" people "feel so entitled to" because they're "lazy and unmotivated," but I won't. But please, if you'd like to discuss that, I am always available to talk. 

I hope after the pandemic is over (you know, in five years from now), employers maintain this flexibility and allow people to work from home more than they have already. I hope people can start jobs from home without having to prove they deserve to work from home. If I didn't have Trikafta, I would have been extremely worried about finding a job. The pandemic, though, is what really helped me find a job and work from home while maintaining a lung disease. People with disabilities want to work, the world just has to let them. 

The Value of Life: Being Vulnerable During Stay At Home Orders

I don't often use this blog to be political, but I think now is an okay time to talk about a pretty hefty topic. It seems as though the COVID-19 pandemic has illuminated the values people place on life, and whose lives are in fact valuable.

This is a big statement and I'm going to try to articulate my thoughts as best as I can. Please be patient with me as I may circle around some ideas throughout this piece. I also want it to be clear that this is by no means a black and white issue, and at times I am playing Devil's Advocate, because it's very important to consider everything.

The idea of keeping vulnerable persons (people with underlying health conditions such cystic fibrosis---people like myself) and the elderly inside to keep them safe is a good idea. One I fully support. But I've seen a lot of people say how we should allow those who are young and healthy to be out and about, even recreationally. In fact, Governor Tim Walz is flirting with this idea with his Stay Safe Minnesota order. We are blurring the lines between giving people responsibilities and giving people freedom. While I and the rest of the vulnerable population have to stay home because we are at risk, others are starting to be allowed to freely go about their day, even return to work if they so choose.

Now, again, this isn't inherently bad. I want to stay home. I plan on it. I agree that those who are vulnerable need to stay home right now. I support that! But. The language we use must be chosen carefully. The orders should not be allowing non-vulnerable people to resume business as usual. [And yes I'm aware that life is not just continuing as usual, but we are starting to. If not in MN necessarily, then other parts of the US and the world.]
I always like to read the comments and replies people make on news sites' social media posts pertaining to stay at home orders and the pandemic as a whole. The picture below is a good example of this, and I've seen a lot of similar comments on WCCO's and the Star Tribune's coverage of the stay at home order. They show us how people think the vulnerable should stay home while the rest of us can return to our lives. And the revised stay at home orders (or the eliminated stay at home orders, the orders replaced with "Stay Safe" orders) seem to support this idea. If you are vulnerable, you aren't valuable.

Just one of the many comments protesting staying at home

I don't think Walz truly thinks this. I don't doubt that Minnesotans think this, but I like to believe Walz just might not be thinking this through all the way. Why do I have to stay at home while you can do more things? Your freedoms shouldn't require my repression. I'm sorry, but we are not living under a fascist dictator in Governor Walz. Your "rights" to go to the bar or to the salon aren't real when it is at the cost of the community's lives. Think of other people.

If we are starting to resume our normal lives, even if only "healthy" people are starting to resume their lives, then the number of cases will only rise. Then the risk will be even higher for vulnerable people like me. It isn't only up to me to stay home and stay healthy. Everyone needs to. It does not make sense to allow healthy people to go out and risk getting COVID. Because they'll continue to spread it, and it will continue to reach us. And not only us, but everyone. Because everyone is at risk and every one matters (boy I'm really trying to avoid saying all lives matter because yikes).

And COVID is so strange! The majority of COVID-19 patients with cystic fibrosis have reported mild symptoms, there have been very few deaths, and only a handful needed ventilators or ICU care. And there are healthy 30-year-olds who have died from the virus. So why are we saying that the vulnerable groups have to stay indoors while the non-vulnerable people are allowed to start returning to their lives? We cannot measure value of life based on health conditions.

Of course this is only scratching the surface. This conversation goes well into pre-existing conditions in healthcare and universal healthcare and the like. While I agree with the practice, the principles of Stay Safe Minnesota are iffy. Everyone is valuable, everyone is at risk. We can't allow the privileged populations to go out and do stuff that is not deemed necessary while forcing the rest to stay indoors because that's their unfortunate condition. We don't have a choice, but everyone else does.
It is so easy for people to say "If you're scared, don't go out!" when it just is not that simple. I'm sorry that you want a haircut, I'm sorry that you want to see your family, I'm sorry that you want to go to sports games and graduate and have your wedding and go to bars and go to your job and have a normal life. But dammit, so do I. Your freedoms and your longing to return to normalcy are valid, but so are mine.

Welcome to my life

Well, here we are: wearing masks, staying 6 ft. apart away from people, and worrying about who might be sick and who might get us sick. What a strange world we're living in.

Except... it's not. Not for me, at least.
This blog is not meant to call anyone out, or make people feel guilty. This is a HUGE adjustment for everyone (myself included). But this (or at least a version of this) has been my reality for 22 years now. Every time I go into the hospital, I've had to wear a mask whenever I leave my room. And boy it's uncomfortable, it's embarrassing, it's hard to breathe, and my glasses fog up. Noelle always has to remind me (and sometimes force me) to put my mask on when I go out, because it sucks! I hate wearing a mask. It feels like I'm labelled a sick person and people want to stay away from me. It makes me obviously sick. But it's necessary. And even if I can't infect others with my CF or my sickness during any given hospital stay, I know that it helps prevent me from getting any sicker from others.

I have had to stay 6 ft away from fellow CF-ers, including my friend Natalie. When we were finally able to meet in person after talking online for years, it was really kind of devastating not to be able to hug (or if we were feeling extra formal, even shake hands lol). When I participate in CF events, like the Climb for a Cure or Great Strides, I have to be mindful that there may be other people with CF there, and I am not allowed to get too close to them. Sharing germs can be incredibly dangerous for us, and now we see that it can be just as dangerous for everyone. It's hard always being on alert. You can't really ever let your guard down.

I've never been able to touch things, either. That sounds weird, but with CF I've always been in what's called contact isolation, which means I can't touch things that may have been touched/used by others, especially those who are sick. This meant not being able to go into/use stuff from the craft room in the hospital. Even if it was something that could be disinfected, my parents or visitors had to handle it, and I was not allowed to participate in a lot of things growing up because of that. That increased the feeling of isolation and it sucked.

So trust me when I say, I get it. Welcome to my life. Honestly, it's kind of nice to have the whole world experiencing this feeling. Boy that sounds mean and I'm not saying I'm glad there's a whole pandemic, but it's always easy for people on the outside to tell you to do something, like Noelle making me wear a mask or my parents nagging me to take my medicine, but now that everyone is experiencing what I've had to experience my whole life, I feel validated. People might understand a little bit more.
Honestly, it's sometimes hard to sympathize with people but I recently saw a friend's Facebook post talking about their first experience wearing a mask while working and they talked about how it was hard to breathe and was very uncomfortable and I laughed. I wanted to comment "Welcome to my life! See how hard it is?" but I remembered that this isn't their normal. But this is our shared reality now, and I need to adjust just as everyone else does. It's nice to have people to sympathize with and who appreciate my struggles just as I appreciate theirs.

Recently, my Facebook memories showed me hospital prom 2015, where Noelle and I posed with masks on our face. It's a cute picture! One of my favorites. Now I'm seeing similar pictures with people's weddings (oof. Might have to recreate it for our wedding, too), and again I just kind of smile at the thought of people going through the same thing I've had to go through. I've had proms canceled, a confirmation, and I've put a lot of my life on hold thanks to CF. Life is a struggle, and thanks to COVID-19, we're all struggling. Thanks, COVID-19...

Hospital Prom, 2015. We wore masks before it was cool

I also keep thinking of the movie Five Feet Apart during this time, and at that I do laugh and throw my arms up. People romanticized that struggle, the sickness, the devastation of not being able to be close to your loved ones. One year later, everyone is living that. It isn't so romantic or nice now, is it? It just makes you step back and think about how this really is people's reality. This is my life. I'm glad to have you here.

But of course, I'm not. I want this reality to pass. It's strange, because it won't pass for me ever, really. Yes, I have gotten a lot healthier (ironically). I haven't needed to stay in the hospital or wear a mask or be in situations where I have to stay 6 ft away from people. But then that took over and my experience with that became full time. It was scary when that set in. This pandemic has changed everyone's lives. I just hope that it changes them afterwards, too, and that people can appreciate just a little bit more what living with cystic fibrosis is like.