Life Lately
The one about the view from trash island.
Wow, first post of the new year coming in… late. Whoops.
How are you doing? How is 2023 treating you so far?
Good I hope!
As for me, well… the year started out well. New Year’s Eve was fun, and I had planned to take a week off of writing in this little space — the first full week of January — but then that turned into a couple of weeks. To steal a phrase from one of my favorite podcasts, I currently feel like I’m hanging out on trash island.
Dramatic? Sure. But in 2023, we get to embrace our melodramatic side, okay?
Anyways, trash island. That’s the place where you feel like things are a mess, you’re not quite yourself, etc. I am not, you know, really living there, but I feel like I’m visiting because I’ve been living out one of the scenarios I have dreaded practically since I was a kid. (Dramatic, told ya.) I have talked about this a bit here and there so you may be familiar with what I’m about to say — especially if you’ve been reading along for a while or know me in real life — but I have a chronic blood disorder, and I’ve had it literally forever. It mostly doesn’t interfere with my day to day, beyond the aspects of my normal life that are a result of having this chronic illness (like lots of doctor appointments), but there is this teensy little thing about needing to get blood transfusions to stay alive. Well, this month, the blood shortage — which we’ve been in, on and off, really since the pandemic started — has reached a significantly more severe level, due to the tripledemic situation that was hitting everyone around the holidays (i.e., the flu, RSV and Covid). For most people that’s just a news headline, but for me, it’s personal. At my most recent transfusion appointment, I was told there was not enough blood to go around. Specifically? Not quite enough blood for me.
I’ve been doing this chronic illness thing for more than 30 years, and that was a first.
I may have burst into tears. (It was embarrassing.)
I’ve written publicly before about the blood shortage and what it means and why donating blood is important, and you can read about it here. The long and short of it, for me anyways, is that this is on my list of nightmare scenarios. I need donated blood to survive, and so do a lot of other people in similar boats. I have a very specific treatment plan that is required to keep me healthy and just… functioning like a normal person who wants to live a long time. Now it feels like a big ol’ question mark, and I hate it. It’s scary, and it gives me a lot of anxiety, because I have zero control over it. All I can do is continue to ask/beg/coax people to donate blood. (“There are free snacks!!!” I always say.)
Anyways, when this happened during my last transfusion appointment, I ended up only receiving half of the amount of blood that I’m supposed to get, and it sounds like that’s about to happen again at my next one. That stinks, for a medley of reasons I won’t bore you with here, though I’m grateful to have at least gotten that.
The thing that’s bugged me most of all, though, and that I maybe shouldn’t write about but am anyways, is that after I tried to get a better understanding about how blood rationing decisions were being made, one person (not someone at the clinic where I get my blood, because they are all angels) told me they were “sorry for my inconvenience.” Ma’am, I was not inquiring because I felt inconvenienced. I was inquiring because this is my life. This is me trying to keep myself well and, frankly, alive. I’m not complaining about not getting the jacket I ordered, or because I want an extra shot of botox (not that there’s anything wrong with getting botox or any other elective procedure!). I’m not crying because my latte was made with the wrong milk.
I realize that’s potentially a polite response to someone, but, depending on how it’s used, it also is a sentence meant to get people to stop talking. It (clearly) got under my skin, mainly because it reminded me of how misunderstood and frequently ignored people with chronic illnesses and disabilities are in this country (and I say that as someone with immense privilege and an “invisible” illness who can float the world mostly normally). That response also came at the end of a longer conversation that only further made it clear that this person didn’t understand why I was upset, and potentially thought I was overreacting and/or being a brat for bugging a doctor’s office with questions.
That exchange, combined with the blood shortage’s impact, has left me feeling embarrassed and angry, not to mention kind of freaked out about what happens next. So, hence the not writing here. I didn’t want to bring everyone down, and I’m also not talented enough at compartmentalizing to think of something else to share at the same time.
Having a chronic illness is (perhaps surprisingly, after this novel) not something I enjoy talking about, and is something I only discuss publicly nowadays because I hope that sharing my experience can help others. (Or, push people do awesome things like give blood.) For me, what makes living with a chronic illness tolerable is knowing I have consistency and stability in the form of a solid healthcare routine (it’s basically part of Maslow’s hierarchy of needs — safety). I know when and where my treatment is, I feel safe with the nurses who take care of me, and while nothing is ever guaranteed with chronic illness management, I usually more or less know when I’ll start to feel lousy so I can plan my life around it. (There is immense privilege in that too — not every chronic illness affords even that sense of control or predictability.) Now, I have lost that sense of certainty about what my routine will look like, or even when I’ll start to feel like junk, because getting only one unit of blood when you’re supposed to get two basically assures that you’ll feel like you’re in a hole on trash island much sooner than you expected.
It is also uncomfortable as hell to feel like you’re begging for something that, at no fault of your own, you need to stay alive.
This isn’t meant to be a complain post, but rather I’m sharing all this because a.) I didn’t know how else to explain my new year disappearance, and b.) because this whole experience so far has taught me a couple of things. One is that you must (must!) advocate for yourself in this life. I already knew that, but this has been a good reminder. When it comes to your health especially, but really, in all places, please stand up for yourself! Ask questions. Be a nudge. If someone thinks you’re annoying, cool — they’re going to go home and likely not think about you again, but the thing you care about or that’s super important to you? That’s going to stay on your mind if you don’t fight for it.
The other thing is that how people respond to you says a heck of a lot more about them than it does about you. That made me feel better to realize, so I hope it does for you too.
Anywho! If you’re also feeling like you’re on some version of trash island, I’m sorry, and I hope we’ll all be off soon and back to brighter days and feeling like ourselves.
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Thank you all for listening! Back to our regularly scheduled Friday posts coming next week. In the meantime, I want to hear about you! Tell me how your new year’s been so far in the comments or email me. And please, do sign up to donate blood and encourage others to do same. I would appreciate it.
Have a great rest of your Thursday! xo
Thanks for reading,
Joelle