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.

Look at me now!

It's been one year and one week since I've been in the hospital. For me, that's huge.
I don't know when the last time I was out of the hospital for more than a year, but it's been a while. In recent memory (since at least freshman year of high school, ~8 years ago), I've gone into the hospital at least once every year, and oftentimes twice a year. Being out of the hospital for more than a year, then, is a really big deal.

The best part? I did it almost all by myself. I didn't have any IV antibiotics, I was on oral antibiotics once, and I was only on Trikafta---the new CF modulator---since November. I've worked for this accomplishment and for maybe the first time ever I successfully fulfilled a New Year's resolution. And I don't plan on stopping.

Trikafta was announced and introduced in November (if my memory and Facebook posts don't fail me). I started the medicine on November 22, 2019, and I have noticed a huge difference. I cough so rarely and when I do it's less productive. If it is productive, my mucus is clear. I haven't seen yellow mucus in two months. That's weird! And, most surprisingly to me, I have more energy than I've ever had. I've been dancing and playing racquetball and on my feet noticeably more. It's such an incredible medicine and I can't ignore its effects. My efforts to stay active and healthy, paired with Trikafta, have paid off. I'm getting healthier. That's something I guess I never thought would happen. You see, cystic fibrosis is a chronic, progressive disease, which means that it gets worse over time. The older you get, the less healthy your lungs get. Trikafta has flipped that switch. (Not completely. I want to be clear that I do still have CF and I have to take all my medicines and do all my treatments still. The progression has slowed significantly and technically has reversed ever so slightly in terms of my lung functions, but the disease itself is still there and needs to be treated and will still get worse over time. That time, however, will be longer than before.)

I'm graduating college in May. I'm getting married in June. My life is just beginning and this medicine has come into my life to support my plans. My goal to stay out of the hospital for a year was inspired by my graduation and marriage and job plans; I didn't know of Trikafta until it was announced in November. I wanted to be healthy for myself, for Noelle, and for my friends and family. That's happening and I couldn't be more excited. In some aspects, life is actually getting easier which is so, so weird.

I'm a little nervous, though, because with this feeling of ease and improvement comes a looming temptation of complacency. I've cut down from three vest treatments a day to just two. I haven't been doing my tube feedings as much (part of that is being at home for winter break but part of it is still my complacency). A year ago I was more motivated than ever to take on my treatments and feedings and medicine fully to be the healthiest I can be. I've started to become healthier, but if I don't maintain that work ethic I won't be the healthiest. Life has gotten better, my CF isn't as burdensome, but it's still there. I can't settle for what I have but I should strive for what I want, what I can be and what I can do. This year is going to be huge for me and if I work hard and stay disciplined, then this really will be only the beginning.