Nobody is really useless, I always say; if nothing else, you can always be a bad example.
I just feel useless since I’ve been sick so much. Maybe even worse than useless, since not only am I not doing much these days, other people have to keep stepping up to do my work on top of their own.
It’s a little melancholy to get pneumonia for your birthday. Honestly I would have preferred a scented candle or some colored pencils. It makes me wistful for all the years I made some big enthusiastic goal, and then eventually got around to completing it a few years later.
This year? I thought I’d make a goalless goal, just give myself a year to do nothing and not feel guilty about it. Or bored.
I made it a few hours, I swear I did!
Then I came up with something, something I actually found inspirational and exciting in spite of my current limitations.
Let’s get to that in a minute. First, I want to say that there are quite a number of goals that are still possible even in the midst of severe pain and illness:
To maintain a streak of never snapping at people, no matter what
To always say ‘thank you’ when appropriate, plus some extra
To track symptoms as accurately as possible - for science!
To set alarms and reminders, and take meds on time
To use a wastebasket rather than leave tissues etc all over the place
Not that anybody needs to do anything, or follow anyone else’s dictates - just that for me personally, it helps to maintain a certain amount of control over my attitude, my behaviors, and the things I say to other people. Until the day my head starts spinning around backwards, I can stop things from coming out of my mouth that I wish I could call back.
(If that happens, go ahead and call a priest, why not).
Even on bad days, I can recall a few particularly rude people, notorious for their constant sarcasm and cutting remarks, and think to myself, at least I’m not nasty like So-and-So. Keep it together, suck it up buttercup.
Kindness, if nothing else. Kindness, or maybe they won’t keep coming back...
It weighs heavily on me that nobody owes me care or nursing. There is not a person on this green earth who was born to be my servant or wait on me or watch over me or bring me things. Those who are willing will say, “I’m doing what anyone would do,” or “you’d do it for me,” the second of which is true and the first of which, alas, is not.
Everyone is somewhere on the spectrum of Taker to Giver, not always where we think we are, but we’re all on there somewhere. I try to keep it dialed to Giver when I’m able, because I know how often there are extended periods when I’m forced over to the ‘receiving’ end.
Personally I don’t mind caregiving. There’s a lot of room for personal time when looking after an ill person, especially when they need a lot of sleep. I can just turn on an audio book and clean and cook and carry a tray, doing what needs doing, while reserving a corner of my mind for myself. This is because I’ve always been able to see a way out, that there is a natural time limit after which my services will no longer be needed.
It’s probably much harder when it’s indefinite, when it’s been going on for years, when it might go on for yet more years, when nobody knows.
That’s what I worry about.
I worry that I’ll never feel well again, that I’ll never get back to what I would consider 100%, that I’ll just have to progressively reset what counts as ‘not unwell.’
That’s why I’ve put aside my goals about going to grad school, or writing a book, or training for an ultramarathon. At least for now, when I’m still on an inhaler and still not over this post-COVID pneumonia.
And that’s where my new goal comes in!
As bad as I feel right now, a day that has included chills, trembling hands, coughing, ears ringing, and the swallowing of 18 pills, I believe that improvement is possible.
Why? Because I’ve done it before.
I realized recently that I have a storyline about this already.
Back in 2004, I had a terrible respiratory infection. At that time in my life, it didn’t occur to me to go to the doctor at times that should have been obvious, because I didn’t have health insurance for most of my 20s. It wasn’t until my friends intervened that I went to the doctor on campus, leaning on every bench and tree and lamp post along the way. The nurse had me breathe into a spirometer, where I rated a 52%. (Oh, maybe that’s why I’ve been coughing up blood...)
Tl;dr, they gave me an inhaler, and I missed three weeks of work, but I quit coughing and got better. Looking back, it really took me about a year to start rebuilding my cardio endurance. There was a day that I tried to go for a bike ride, made it about a mile down a gentle hill, and had to turn around and push my bike home. But?
Exactly ten years later I ran a marathon.
I know it’s possible to regain lung capacity because I’ve done it. I know it’s possible to recover from a really gnarly respiratory infection and go on to feel totally fine.
Is it going to be the same for me after COVID-19? I don’t know, but that’s not going to stop me from trying. If I have data then I’m going to contribute it.
My new goal is to learn everything I can about breath work and respiratory therapy. If there are exercises, I’m going to do them. If there are training tools, I’m going to test and compare them. If there are logbooks or studies or tracking devices, I’m going to find them.
It’s hard sometimes, feeling weak, feeling like a burden on others, feeling disappointed about having to let go of goals that were appealing and personally meaningful. One way to deal with that is to shift focus to something else. Not “what can’t I do anymore” or “what am I losing this time” but:
What CAN I do?
What can I do today?
What will I be able to do tomorrow?
If nothing else, how can I use this particular experience in a way that might help others?
Someday this pain will be useful to me. Or maybe not me, but someone. And if that’s true, then it’s useful to me after all.
I've been working with chronic disorganization, squalor, and hoarding for over 20 years. I'm also a marathon runner who was diagnosed with fibromyalgia and thyroid disease 17 years ago.
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