“Fully Recovered”

img_4824Great news, everyone! I am fully recovered from H1N1!

Now Catherine, you might be thinking, why are you talking about H1N1? Don’t you mean COVID-19? H1N1 was 11 years ago! Wrong pandemic, girl.

No, I do not mean COVID-19. I mean H1N1. I am well aware that H1N1 was 11 years ago because I am well aware of when H1N1 changed the course of my life. (Why yes, yes I do have a complicated emotional history surrounding pandemics, thanks for asking.)

I’m “fully recovered” from it, though. I was unable to finish my university degree, I’m unable to work, I’m a part-time wheelchair user, I take a couple dozen prescription medications, I am fed and hydrated daily through an IV in my chest and three times a week I infuse plasma products under my skin.

But not to worry because you can’t catch H1N1 from me anymore, seeing as I’m fully recovered and all.

“Fully recovered,” actually, because I think the quotation marks are important here. Because I think it’s really important people realize that fully recovered does not always mean what they think it means.

Especially young people.

I got to be a young adult, once. For about two months. Until two months after I turned 18 I came down with a mild case of the flu that I never fully recovered from despite the fact that I “fully recovered” from it.

At first it was just post-viral fatigue syndrome. Which was the first thing I had never heard of that I was told I had. At six months it was post-viral gastroparesis, the second thing I had never heard of that I was told I had. I had also never heard of a virus being able to cause nerve damage. I was told it could take up to two years to recover but that I would recover.

Two years to recover from a virus?! Nerve damage from a virus?! Who knew??

The two-year mark came and went and I wasn’t better. By three years not only was I not getting better but I was actually getting worse. By four, five, six, seven years, the “post-viral” description had been downgraded from a diagnosis to a coincidence, just that thing that coincided with the start of all these health problems that no one could figure out.

Until the eight-year mark. When I ended up in the office of a doctor who said, “actually this IS because of that virus you had eight years ago. Yes, all of it. Yes, even that. And that.”

Do you know what else she said?

“I see it all the time.”

I was young and healthy but I had a predisposition to autoimmune disease and then I caught a virus and my whole life changed. And I know way too many people with the same story.

And I desperately don’t want it to be your story.

And so I desperately want you to stop and think before you act. Think about the consequences. Think about what you could lose.

The friends that you can’t keep apart from right now, the ones who you’re going with to large gatherings and parties? Are you prepared to lose them as friends? Not because they’re going to die of COVID-19, I mean they might though it’s unlikely, but because if you get sick and “fully recover” but don’t actually recover, well, they’re not all going to stick around. They’ll check in at first, but as weeks turn into months and months turn into years, they won’t be able to handle the discomfort of your reality and when you can no longer join them at the pub or at the beach, they will disappear.

What about that drink you want to go get with that group of people who are not in your official bubble? Do you think that’s worth the risk? Will you still feel that way when you can’t drink alcohol at all anymore because it interacts with many of the dozens of medications you are taking for all of the symptoms and conditions you are now managing after being “fully recovered” from COVID-19?

What about that dinner at that restaurant you want to go have with a group of people who are different than the group of people you met with for that drink? Do you think that’s worth it? Will you still think it’s worth it when you aren’t able to eat at restaurants anymore because of all the food restrictions you have now that your digestive system has never been the same since “fully recovering” from COVID-19? What about when you wake up after surgery too afraid to even look at the feeding tube that’s just been surgically placed in your abdomen because you can no longer eat enough on your own?

Will your vacation on which you ignore public health guidelines still be worth it if it ends up being the last vacation you ever get to take because you’re unable to travel anymore? Physically unable to travel, sure, but also financially unable because you “fully recovered” from COVID-19 in a way that left you too sick to hold a job so now you’re forced to live on $1200 per month disability payments. And if you’re trying to figure out how you’re supposed to survive on $1200 a month when your rent alone is twice that, well don’t worry because it ends up being irrelevant when you have to move back in with your parents because you’re too sick to take care of yourself.

Will you still be glad you pretended like there wasn’t a pandemic going on in order to make the most of your 20’s if it costs you the chance to become a parent one day? Will holding that gathering be worth it if it means never one day getting to hold your baby in your arms? Will that Instagrammable photo still matter when you can’t even stand to open Instagram up some days because the pain of seeing everyone with their babies is too much?

There is a whole spectrum of “fully recovered” between a COVID-19 death and an actual full recovery from COVID-19. Because COVID-19 is still so new, there are still so many unknowns, but life-changing post-viral illnesses are not a new thing. And it’s not hard to find reports of people still suffering debilitating symptoms months after coming down with COVID-19. Not just in the people who were hospitalized for severe illness, either, but in people with more mild illness, too. And many people will truly fully recover. But some won’t. And of those who don’t, many people will not end up like me. But some will.

And what you need to understand is that there is no good version of “fully recovered” there are just versions that are not as bad as others. But every version involves loss and heartbreak. As someone who has missed out on literally everything for the last decade, I get that it’s hard to miss out on things, but trust me when I say that you do not want to end up anywhere on that “fully recovered” spectrum.

I was young and healthy but I had a predisposition to autoimmune disease and then I caught a virus and my whole life changed. I’m “fully recovered” but there are some things and some losses I will never recover from. Not just physically, but emotionally, too.

I’m not telling you my story because I want your pity. I just desperately don’t want my story to be your story. Or your friend’s story. Or your friend’s relative’s story. Or your friend’s relative’s coworker’s daughter’s story.

I do not want my story to be anyone else’s story. There is good in my life but this is not a life I would wish on anyone.

And so I want you to be careful. I want you to think beyond the next hour or day or week. I want you to recognize that you are not invincible before life decides to prove it to you. I want you to think about other people. I want you to think about how your actions could ruin somebody else’s life. I want you to not be okay with that.

I really, really want you to not be okay with that. Please, do not be okay with that.

This is not forever, but it is for right now. And it could be your forever if you’re not careful now.

If you get COVID-19 you might fully recover.

Or you might “fully recover.” Like me.

I am “fully recovered” from H1N1.

And yet…

Sick and disabled in the time of COVID-19

Hi. So it’s been a while, hey? The last time I was here was in March, just after COVID-19 had been declared a global pandemic. Just a pandemic, really. I don’t know why we always seem to add the word global, because the WHO definition of a pandemic means that the disease spread is worldwide. The “global” is part of the definition. Saying “global pandemic” is redundant in the way that saying “SIN number” is actually saying “social insurance number number”…

But anyway. That’s the last time I was here. Back in March.

So approximately five years and eight months ago…something like that. Pandemic time is different than regular time.

I’ve wanted to write here since then. Many times. There have been so many important things to talk about, but it’s all just kind of been too much, you know?

As someone who is high-risk for complications of COVID-19, as one of “the vulnerable” in this pandemic, this has been a really challenging time. That’s an understatement, but honestly I can’t condense what this experience has been into a few adjectives. So let’s just stick with challenging.

This has been a really challenging time.

And probably not in the ways that you might be thinking. Yes, isolation is hard, but for so many of us who fall into this vulnerable category, social isolation isn’t really anything new. Lack of control and endless unknowns are also stressful, but again, both of these are par for the course with chronic illness and disability. We’re used to these things.

It’s the blatant disregard and even disdain that people are showing for our existence that is the hard part.

It’s everywhere. Some people are direct and vocal about it. Others are more subtle about it, but they still make it clear through their actions that the lives of disabled people are not worth their inconvenience. We hear it and see it every day.

Those of us who are sick and disabled always knew that these beliefs were out there; we come face to face with them all the time. But the pandemic has made them bolder and louder and put them on display. And brought them closer to home. The pandemic has made it acceptable for people to discuss the pros and cons of our disabled existence, right in front of us. The pandemic has made it acceptable for people to discuss whether our lives are even worth protecting seeing as our lives are also very costly to maintain.

People think how dare we want to keep on living even though we are unable to work and knowing how much our healthcare costs society. Why can’t we be willing to sacrifice ourselves for the good of the economy? For the good of society. For the benefit of the younger generations. Shame on us for being so selfish. As if many of us aren’t part of the younger generations.

Because let me remind you that not every vulnerable person in this situation is elderly.

But why does age even matter? Why are we so comfortable with allowing older people to die? Why does an older person’s life have less value than a younger person’s?

The same reason a young disabled person’s life has less value. Because of productivity, of course. Because our society values productivity above all else, and anyone who isn’t able to work or who doesn’t have the potential to become part of the workforce is a financial burden on society.

We are seen as burdens.

I have spent the last decade of my life wrestling with the idea of being a burden. For years I did everything I could, including burdening myself in a way that often made myself sicker, to not be a burden on anyone else. And while I’ve spent the last few years working really hard at not seeing myself as a burden, it’s still something I struggle with. Many disabled people I know do.

It’s easy to tell someone that they aren’t a burden when you are able to still go about your life mostly as you please. But what about when protecting them comes at the expense of your freedom? What about when keeping that person safe means you aren’t able to go about your life as you please anymore?

We are seen as burdens.

Some people say it out loud. Some people even say it out loud to our faces. Many others are more subtle about it. They won’t say it out loud, they might even actually decry those who are saying it out loud, and maybe they don’t even acknowledge to themselves that they resent us for being vulnerable, but actions speak louder than words. Some people are yelling it through their actions. Others are just whispering it, sometimes so quietly that the average person might not even catch it.

Governments leaving disabled people behind with financial relief. No one caring that we have been left behind. Standing too close to someone in a lineup. Gathering with large groups of people indoors. Not wearing a mask. Having too many close contacts. Not bothering to pay attention to changing public health guidelines. Knowing what the public health guidelines are and choosing not to follow them. Getting upset with the people reminding you to follow those guidelines.

The big things, the small things, and everything in between. But whether a yell or a whisper, those of us who are vulnerable can still hear it loud and clear. Because we know what to listen for.

And we hear you:

Your social life is more important than our lives.

Your vacation is more important than our lives.

Your haircut is more important than our lives.

Your freedom to do whatever you want to do and go wherever you want to go is more important than our lives.

Your lives are more important than our lives.

We get it. We hear you. We hear your words and your actions, your yells and your whispers.

We hear you. And hearing you is hurting us in ways that I don’t know how to explain.

I don’t know how to explain what it feels like to watch people who you know are a higher priority for healthcare resources than you are, cavalierly and selfishly behave in a way that threatens your safety. I don’t know how to explain what it feels like to listen to someone casually discuss with you the ethics of who should get priority access to those resources and have to say, “I’m not old but I’m vulnerable and I also don’t want to die.”

I actually had to say that. I also don’t want to die.

I don’t know how to explain what it feels like to know that there are people who think it’s okay if I do.

So yeah, it’s been a challenging time, being confronted with this on a daily basis. It hurts. It stings. It angers. It saddens. It consumes. It frustrates. It angers and saddens some more. And honestly this is just a piece of it.

I haven’t written about it because I haven’t known how to. And because I’ve been trying not to think about all of this too much so as not to let it swallow me whole.

That’s it. I don’t know how to end this.

Please just care about people. Even people you don’t know.

Keep your distance.

Don’t be racist.

Listen to people with less privilege than you.

And wear a damn mask.

I said take a seat

So it turns out that I’m a bit of a hypocrite. I wasn’t always. But somewhere along the way I’ve become one when it comes to feelings. Specifically when it comes to feeling my feelings.

I’m a big supporter of feeling your feelings. As opposed to ignoring them, I mean. You have to really feel your feelings before you can rally and carry on. I’m also a big supporter of rallying, but not before the feelings have all been felt. I wrote a post about this back in…2017? Care, Feel, Rally, Repeat. I wrote it in part for me, but really I wrote it for some people in my life who were going through some hard stuff that involved lots of caring and feeling and rallying. But in the year that followed it became my own mantra because I did lots of caring and feeling and had to do lots of rallying. Care, feel, rally and repeat. In that order. I’m also a big supporter of doing things in the correct order.

Anyway somewhere along the way in the last little while I’ve become a bit of a care, feel, rally, repeat drop-out because I’m not doing the best job at feeling my feelings.

I have a lot of big feelings about a lot of big things right now.

I should note that I started writing this post a couple of weeks ago, before the global COVID-19 pandemic. As I’m sure you can imagine, on top of all the other big feelings, I also have some pretty big feelings about this current situation. Giant ones, actually. And maybe I’ll share more about that in more detail another day.

But not today. Today is about feelings in general.

I realized recently that a lot of the time when I share how I’m feeling about something I follow it up with a shrug. Two kinds of shrugs, actually. There’s a verbal shrug that comes in the form of, “oh well…it’s okay…it’s just the way it is…,” or something along those lines. And then I either scrunch up my face a little bit or tighten the corners of my lips and actually shrug my shoulders. And then I change the topic of conversation. A lot of the time I end up avoiding sharing how I’m feeling at all.

I do it mostly for other people. We as humans don’t like to see other humans struggling, and we don’t often know what to do about it. So when I see that someone is struggling with watching me struggle with something I quickly put an end to that. Part of that is just who I am, because I’m oversensitive to the way that other people feel and I don’t want anyone to feel sad or bad because of me. But part of it is conditioning. Without even realizing, a lot of us put pressure on other people to make us feel better about what’s happening to them, and so I’ve spent a lot of the last ten years trying to make other people feel better about my situation, reassuring them about things that I am not very sure of myself.

It ends up coming across as accepting.

Everyone always thinks I’m just so accepting. They praise me for it. Which I never know what to do with besides more face scrunching and shoulder shrugging because what other choice do I have but to be accepting?

And don’t get me wrong, I am very accepting. And that acceptance is hard-earned. It did not come pre-programmed into me, rather I had to wire it in myself, parallel to the hard-earned wisdom. And on the one hand, it’s true that I don’t really have much choice but to be accepting, because what is my other option? Denial? Misery? How does that help me?

But on the other hand, accepting doesn’t mean that there isn’t also room for feeling the feelings.

And that’s what I realize I haven’t been doing a very good job of. Because my tendency to shrug off my feelings with other people has translated to shrugging off my feelings with myself. And without actually feeling my feelings, my efforts at rallying are not always the most successful.

In order to feel your feelings, you have to sit with them a while. Instead, I’m doing this awkward thing where I sit down for a second and then the chair is not very comfortable so I quickly stand back up again. Or I worry that maybe that wasn’t my seat to sit in and maybe I’ve sat in someone else’s seat so I don’t stay seated just in case. Or I sit down and look around and no one else it sitting down so I mustn’t stay seated in case that comes across as rude.

Or maybe I’m just losing miserably at a game of musical chairs.

The point is that I’m standing near my feelings, but not actually sitting with them. And you all know how good I am at standing…not.

But since I said that I was going to spend this year taking a seat, it’s only fair that I sit with my feelings, too. Actually feel those feelings. But still be accepting. Because they’re not mutually exclusive. Because there’s room for both. Because it’s okay not to be okay with something but to be okay with it not being okay. Because I don’t have a responsibility to anyone to be okay with something. Because I don’t owe anyone a face scrunch and a shrug. Because I owe it to myself to stop shrugging.

Because I care about so many things and I want to keep rallying. And in order to rally properly I need to sit with my feelings first, so that when I get up to rally I’m actually ready to do so.

And anyway I just wanted to actually finish up these thoughts to share with you because these are uncertain times and uncertain times bring with them lots of feelings and I want you to know that it’s okay to sit with them, to really feel them. We’re all feeling them. It’s okay to not always feel okay right now.

And even though it’s not okay right now to actually be together face to face because of the whole pandemic-necessitated-social-distancing thing, we can still sit with each other while we sit with our feelings.

And feel them. And share them.

I’ll save you a seat.