I hate the burden of feeling like a burden.
I feel it all the time. I felt it last week when I went on a “bubble vacation” with two of my closest vaccinated friends. I felt it this week knowing I won’t be able to attend my cousin’s funeral. (In this family, he felt like a brother to all.) I feel it as I write this now.
I’m not going to my cousin’s funeral this week because if I were, I wouldn’t know what was being said, and I’d be unable to talk to any of my family members, as everyone will be wearing masks. I read lips due to hearing loss, and a pandemic is not the time for autonomy.
I don’t want this for my family. I want them to be able to listen, feel present, and grieve, as they deserve. Dragging around a bewildered body that doesn’t know what’s being said or who’s saying it does not achieve that goal.
Due to my current stomach issues (which are being actively evaluated to see if we can turn this decline around as soon as possible), I’m not an easy person to take on trips. I require frequent breaks. A lot of wait time happens. And sometimes I even have to intentionally dehydrate and starve myself if I want to be able to drive or sleep for more than 30 minutes.
This is just the way my life is right now. But even so, if I love my family and want to honor my cousin’s beautiful life without making timelines and communiqué all about me, I need to do this, because it’s just the right thing to do.
Is it right for me? I’m not sure that matters. Because, as I’ve already established, it isn’t about me.
But when it comes to things like vacation and friend time (my very real mourning swept under the convenient rug of this column one paragraph above), it’s different. Even escaping with other bubbled isolationists can feel isolating.
It didn’t with my two best friends, to be clear. They know me too well. They were there for a code-like situation in the ICU some years ago, when they were shuffled out of the room in stride. They were there for blood spatters on my bedroom wall — hemoptysis gone haywire. (Say that three times fast and you just might spring a bleed yourself.) They’ve been around long enough to know that these awkwardly casual column admissions are just life. Truth. Time that’s now passed.
This time, however, although my wayward health-wasting wastes others’ time left and right, I was worried that my medical needs would detract from their fun. Although I don’t think that happened, it likely would have if we’d crashed at the house of our other dear friend isolated nearby. It would have meant ragged breathing after beach walks, constant runs to the restroom, and a drive home that took twice as long.
That’s not fair to anyone who hasn’t signed up for it, and even if my best friends sort of have and kind of did, I’m still not sure it’s fair to them, either.
My nephew is getting married next week, and I asked my sisters if they’d mind buying clear masks beforehand. They kindly, promptly did so. (This column was originally titled “Two Weddings, a Beach, and a Funeral,” but the joke still feels in poor taste.)
None of this feels real. Not my recent decline. Not the notion of unburdening myself from feeling like a burden. Not how easy it really can be to just ask for help and receive it (as in the case of my sisters). And most of all, not the fact that a funeral wasn’t supposed to be a part of this column at all.
I wrote this thinking I’d come to some enlightened endpoint about navigating family and friends as someone who can’t always navigate herself, but it feels empty. Forced. Wrong.
Why write about myself when there are more important things to be remembered? Why write about health when I’m still here, alive, to write about it? Why say “I” this many times in an 800-word column when I don’t much care about me right now anyway?
I wish I had more to say. A better closing statement. A way to wrap it all up so you feel relief and we know the moral has been learned. A way to repeat the words, “Life. Truth. Time that’s now passed.” But time is passing, and we aren’t all in it, in so many more ways than one.
I wish I had more to say, but I’m not sure that matters.
Because, as I’ve already established, it isn’t about me anyway.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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