eSCAping Type 1

I really had every intention of posting a cute Easter picture of my baby last Sunday.

But then I got sad because his first holiday couldn’t be spent with family. And then I got mad because people were shamelessly posting pictures of themselves doing the very thing I was upset about. And then I got frustrated because the result of their selfishness is that my kid’s next holiday might be spent the same way.

I know a lot of you are taking isolation seriously. But, unfortunately, a lot of you aren’t. (Which you’re then proving via social media. Wtf.) And – surprise! – your actions affect far more people than just you. I thought I was done explaining this when I stopped teaching teenagers. Alas…

There are many names for it – the butterfly effect, six degrees of separation, paying it forward, pyramid schemes… But, basically, it’s the idea that YOU have an impact on more people than just the ones you meet. 

Ok, so…

This might seem random, but you should know it’s actually very common for people with SCA to develop pneumonia due to our throat muscle/swallowing problems. And we don’t necessarily have a weak immune system, but severe illness can put a lot of stress on our already-overworked bodies… unfortunately resulting in death. And since COVID-19 causes pneumonia, I’d really rather not get it. I doubt my two-month-old would fend very well either.

But I have to take him to the doctor to get vaccination shots next week (let’s not debate that, it’s happening). And say that morning, as you’re taking your daily stroll, you just happen to hold that doctor’s office door open for me because you’re nice and essentially protecting me from germs. We briefly brush against each other, but you work from home now, so it’s ok. 

But your cousin, whom you hugged last night when you went over for dinner, still goes into work every day. She only works with five or so other people, but jokingly high-fived one of them when he showed up late yesterday morning. He had stopped at his brother’s house quickly to drop off some soup. You see, his brother’s wife has a slight fever, but hasn’t left her room in days, so it’s fine – chicken noodle will help.

But when I die a week later, it’s because of you.

I get that that scenario is super dramatic and relatively flawed and therefore very unlikely. Realistically, the only one getting the virus would be the husband, who had direct physical contact with his sick wife. But I’m just trying to make a point here!

Yes, I quarantine because I have a higher mortality risk and my life is my responsibility. But not everyone has the opportunity to do so. So don’t you see why it’s important for you to isolate, too? Don’t you see how spending Easter with your grandma (or, I don’t know, going to church, or participating in a public vigil) was potentially really dangerous? Don’t you see that you need to think of people other than yourself?

You can be safe and clean, but that’s only half the battle. By interacting with someone, you’re also interacting with whomever they contacted, and then whomever they touched…

Yes, washing your hands and not touching your face helps tremendously, but you don’t know if that other person did. It’s a chain. That’s why it’s spreading.

I’m not exaggerating or making this up. I watch several different news stations, and read plenty of articles… I firmly believe that doctors and scientists know what they’re talking about. And they probably know more about the disease than me or you. So I’m going to take any advice they have to give. And, I don’t know if you’ve heard, but they’re telling us to isolate.

I can’t drive or work anyway, so I’m pretty used to not leaving my house. But that doesn’t make this “normal.” I’m still bored AF, I still miss my family. Believe it or not, this is NOT how I pictured my first few months as a new mom.

I’ve literally only left the house once since March 10. And that was to take Leo on a 10-minute walk up and down our street, avoiding the sidewalk because there’s not 6 feet of passing room. (And by “walk” I mean Cody pushed my wheelchair while I pushed the stroller, basically making a train, because, well, Ataxia.)

We have not let a single person enter our house, either. Family gets to visit Leo through our kitchen window, or the glass front door. Great Gramma, who just moved back here from Georgia, still hasn’t gotten to hold him. He’s only seen his cousins, who live in the neighboring town, via FaceTime.

Hopefully this post causes some realization for someone somewhere. Stay home for me, or Leo, or your grandparents, or – I don’t know – those essential workers that don’t have the OPTION to isolate.

Our government’s plans have already changed a few times in the week I spent writing this. So, of course you can bring up collective immunity and masks and soft opening dates and all that… But my point stays the same:

If social distancing provides even the slightest chance of saving someone’s life, why not stay home if you can do so?

I almost made this my Facebook status, but when my short paragraph turned into a rant I thought this blog would be a more appropriate outlet so I didn’t come across as that girl. 

But speaking of Facebook, there are some pretty wonderful MySpace-esque trends occurring that I secretly really want to partake in. So I’m going to end with those, to leave you on a more positive note – something we all need right now.

Three Pieces of Advice for the Class of 2020 (because I think you’ll appreciate this more than my senior picture?):

1. It’s ok to change your major. It’s ok to transfer schools. The decisions you’re making right now seem huge, but they’re not permanent.
2. Join lots of clubs when you go to college! You are not too cool for them. There are so many to choose from, and it’s a great way to meet people with similar interests, and maybe make friends.
3. YOU CAN STILL BE FRIENDS WITH YOUR BFFS FROM HIGH SCHOOL. If you want to be, that is. I am.

⇑ My grad party / My wedding ⇓

Unpopular Opinion Game (list five popular things that most people enjoy, but you – you nonconformist hipster rebel – dislike):

1. Open concept housing
2. Apple media products
3. Cake & Donuts (unless I’m pregnant?)
4. Pedicures
5. “You” (the TV show, not you as a person ♥)

Movies (help others find something to watch by listing five movies you could enjoy a billion times)

1. Blended
2. Moonrise Kingdom
3. Step Brothers
4. Garden State
5. The Breakfast Club

Concerts (list five concerts you’ve been to and one you have not, then see if anyone can guess the lie):

1. Spice Girls
2. Barenaked Ladies
3. Ke$ha
4. Toby Keith
5. Kings of Leon
6. Dave Matthews Band