COVID-19

Oh, I am sure that this title is not what you wanted to show up on your news feed today, and I would not blame you for scrolling right on by. I know that I am trying to limit my media consumption as it relates to this virus. There has been so much going on surrounding COVID-19 and the havoc that it is causing. We cannot get away from it. Our lives have been completely overtaken and overrun by this pandemic, and it has been extremely anxiety-inducing for many, myself included. Just so that we are all on the same page about where I am at right now: I am in the middle of a crash. This post very likely will make no sense. There will probably be typos and grammatical issues. But I want to get some of my thoughts out there from the perspective of someone in the “at risk” demographic – the chronically ill with immune system issues.

The past few weeks have been different to say the least. Brandt and I planned a vacation to Bermuda about 5 months ago. That trip happened last week (hence the crash). At the beginning of the week, things were happening but not quite to the level of alarm experienced just a few days later. Had our trip been even a week later, we would not have gone. But we figured we were taking a direct flight to an island with no confirmed cases, so we thought we would be okay. The rigors of travel are enough for me to be stressed over as it relates to my health. Just the activities from our trip have me feeling some kind of way. And by “some kind of way”, I mean trying to determine if my symptoms are “normal” crash symptoms or if I am dying from a deadly virus. (And before anyone freaks out, I am being silly to make a point – 95% sure this is just normal crash stuff). But as our week in literal paradise proceeded, our home seemed to be burning to the ground. Brandt received regular email updates from work about how they were planning to handle the crisis. Travel bans were put in place as the virus spread. Though half hoping we would get stuck in Bermuda, I was mostly concerned that we would get stranded. Even more concerning was needing to take the flight back to Boston in a climate that that reminded me of the movie “Contagion”. But we made it home. I kept my hands clean, to myself and away from my face. I wiped down any surface near me with a Wet One. And I was traveling with the embodiment of Mr. Monk, my sweet husband. If I even thought about doing something potentially unsanitary, he was there to pop up and swipe things from my hands.

Since arriving back in Boston, we have gone into self-quarantine mode. Brandt’s office is closed, and everyone is working from home. Now this kind of living is not too different for me. Of course I notice a difference for others, as Brandt is not one who likes being cooped up. He paces our living room while on calls and needs daily walks to keep his sanity somewhat intact, so I understand that this has been difficult for people to adjust to. And my heart particularly hurts for those who cannot work from home. Those who are either on the front lines of fighting this thing or those who cannot work or have been laid off due to the economic strain our world is experiencing and are not earning a paycheck. My heart goes out of all of you, and I do pray that your lives can return to normalcy soon.

However, this topic is the first thing that I wanted to touch on: this kind of quarantine, isolation and uncertainty is how many people live all the time. My community has expressed a lot of hurt and anger over the attitudes of healthy people as this crisis has played out. Let me say first that I completely understand why they feel this way. Especially those who literally have not left their homes in years and have had their lives stolen by this disease when the world continued on without them and without a care that they were missing. Before I continue with my personal experience, I want to note that I might not be the best messenger for my community when it comes to expressing these thoughts. As I mentioned earlier, I can leave the house. I can travel (with limitations). I can have friends over and enjoy their company. I can occasionally go out to dinner and see a movie or show. This is not the case for the severely affected. I want you to imagine what you are experiencing now but add in that you cannot read a book. You cannot watch TV. You cannot listen to music. You must lay in a dark room with headphones on and just exist. That is what they experience. Every day. For days, months, years on end. That is the existence I live in fear of as this virus spreads. It could very well crash me to this level of ME/CFS.

So while I do understand where the anger is coming from, I do not feel much anger (which again, could very well be a result of my place of privilege within this disease) and am not here to yell at you over being upset to be locked up and missing out on life. I especially do not feel anger towards those financially impacted by this crisis. This is another thing that those with ME/CFS will also experience when they lose the ability to work. I am again extremely blessed that my husband takes wonderful care of us. I just hope to use this acute crisis to reach an understanding and gain some empathy from those who might not have thought about what it is like to be isolated from the world.

 I have had time to process being isolated most of the time. I have coping strategies, but a lot of these stem from the fact that I am too sick to care. When I was more mild, I would get serious cabin fever on days I didn’t have anything planned. I would need to go for a drive or a walk, something to get out of the house. Now that I am moderate (a function of not pacing myself while mild), my one-bedroom apartment can seem huge at times. When a trip from the couch to the kitchen can get my heart-rate up, I do not feel nearly the amount of anxiety over needing to rest alone most of the time.  It is frustrating even infuriating at times, don’t get me wrong! But if I was angry and upset every time I couldn’t do something that I wanted to, I would spend the majority of my time feeling this way. That is exhausting in and of itself! That is not to say that being alone most of the time isn’t difficult. I use a lot of the same strategies being advised now: stay in contact with the people you love.

So I have empathy for how a lot of you are feeling! I did not feel well even when I was mild and still wanted to get out of the house. If you are healthy with a normal amount of energy, I get that you are not enjoying this time in quarantine. What has been more troubling as it relates to people being isolated is the number of accommodations being made and how these accommodations just happened overnight. There was no need for canvasing or shouting until you are blue in the face at legislators and employers. It all just happened because suddenly all of the healthy people needed it. First of all, these accommodations are wonderful. Flattening the curve by allowing such things as working from home or having classes online is absolutely necessary. I just wish they were seen as necessary accommodations when the majority of the world was not trying to contain a pandemic. I wish they were seen as necessary for including the chronically ill in daily life. I wish all of these articles on coping with isolation and maintaining mental health in the middle of a crisis (having ME/CFS is a continual crisis) had been a point of concern before now.

 And again, the existence of these things now is a wonderful thing, and I hope that when things settle down and the world returns to normal, access to these accommodations don’t disappear like the toilet paper at Costco. Again, I am blessed. I do work. A very limited amount, but I do work. I work for my brother and can do it all from the computer. Now I have a very understanding boss in the sense that he loves me and puts my health above everything work-related. On days I cannot work, it is not a problem. I am never encouraged to push myself or harm my health to make something happen. I know that not everyone can (or even should) work with or for a family member. However, I do think that we could have more compassion for those wanting to work or continue their education but need accommodations. The people in my community are smart and driven. They are just held back by less than factory-grade models for bodies. If given the chance with proper accommodations, they could add so much to the world.

Okay so the next and probably final thing I want to touch on (brain is really going fuzzy here) is the reaction of some young, healthy people just not wanting to take this crisis seriously. Now here I do get angry. Look I get that it is comforting for people to know that this virus does not seem to kill off the young and healthy. Except why is that comforting exactly? Are the elderly and chronically ill a disposable group of people to you? Also, over 60 is not old. I have 4 grandparents in their 80’s, and I am not ready to send them on their way because I am not interested in social distancing. I am sure that you know someone with a chronic health condition. It is not worth protecting them? Even if the worst you experience is a cough and headache, does it really not matter that you could spread this virus to someone who won’t cope with it as well? Even if you do not know them?! Why are the lives of the elderly and chronically ill not considered as valuable or important? It goes back to an ableist mindset that we are damaged goods not worthy of concern (hearkening back to the accommodations made so easily available once healthy people were threatened). I have seen countless articles shared with some title along the following lines: “Don’t worry you healthy, young people, this thing only seems to off those we have deemed broken and sad! Live your life without fear!” Okay obviously being facetious here, but that is how those articles feel with no context from the poster. It would be nice to see one of these articles shared with a comment about how there is no need to panic (and there isn’t) but that we should follow all measures put in place to keep everyone safe, even us sick people.

And I have seen many healthy people express this sentiment, and I am so grateful to you! Thank you for caring about someone other than yourself. Thank you for keeping you and your kids inside, even when it is very challenging, and murder may or may not have been contemplated. Thank you thank you thank you, for making me feel like a human worthy of your care and concern by knowing that you yourself will probably be fine, but you are doing what you can to make sure everyone else is fine too.