Coexisting with your chronic illness

I know I have Lupus, yet I’m always a little bit surprised when I actually have Lupus. The latest case: I’m a graduate student attempting to work full-time and take classes full-time. I’m in my second week of a 10-week quarter, and I’ve realized that it’s not sustainable.

And now I’m super pissed off.

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A symphony of birds

At work, I park in an underground garage. I’m usually one of the first ones in, so it’s mainly empty when I arrive. Empty, and echoing, and a bit creepy.

In the past few weeks, small songbirds have arrived and begun building nests in the various nooks around the structure. I find twigs and and little odds and ends that they drop, and see them swooping in and out as I come and go.

By the time I leave work, there are lots of cars, and people moving about, and background noise. But in the morning there’s nothing – very little movement, and a wide open space. Their bird songs are amplified, so I emerge from my car every morning to a loud symphony of busy little birds who barely notice my presence, and don’t flinch in the least when the sound of my car door slamming momentarily drowns out their chattering.

I suppose that means it’s spring again. These days, instead of just enjoying the changing of the seasons, I find myself wondering…how much longer will we have seasons? The winter was uncharacteristically warm here, and last summer was uncharacteristically wet. We’re experiencing a sea change. We talk sometimes at work about if it’s okay to enjoy mild weather knowing that the reason why it’s happening will have catastrophic consequences in the not-so-distant future. Our pleasures are tinged with guilt.

I carry that anxiety with me, but I don’t think the birds are aware. They carry on with their swooping and their nesting, and creating avian operettas in underground parking garages as if the world around them is just as it’s always been.

The necessary betrayal of abstraction

I have a graduate degree in Literature, and part of obtaining that degree meant taking poetry seminars. In one of those seminars, we did a section on Gertrude Stein.

I’m not sure what to do with Gertrude Stein. We had to read Tender Buttons, and I recall dreading going to class because I just wasn’t sure what to say. Luckily I had a classmate who did engage well with Stein’s work, and carried us a bit – I recall talking about Stein’s poetic formlessness as a type of resistance.

Here’s a snippet from Tender Buttons:


It’s been nearly 12 years since I read this for the first time, and I still have no idea what to do with it.

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What Children Are Not


Children are not your opportunity for a second chance; you had your chance, and may have more chances, but your child deserves their own.

Children are not wish-fulfillment devices; if you place too many of your own expectations on a child, you’re not allowing them to discover who they are apart from you.

Children are not decorations; they don’t exist to adorn your life or make you look good.

Children are not status symbols; they should not be pressured to help you keep up appearances or compete with others.

Children are not yours to control; they are dependent on adults for a time, but they should be encouraged to grow apart from you.

Children are not your opportunity to have a vicarious life; being involved with your child in healthy ways is good, but attempting to live a different life through them is unhealthy.

Children are not your emotional crutch; your child is your child, and cannot and should not take the place of a significant other or a close friend.

Children are not your future caretakers; saying you want children so you have someone to take care of you when you’re old is an incredibly selfish reason to have a child.

Children are not responsible for your happiness; you are responsible for yourself.

Children are not your physical or emotional punching bags; they don’t exist to absorb your anger, your disappointment, or your failure.

Children are not your therapists; laying your burdens on their shoulders is not only unfair, but it will create burdens that they will then carry into adulthood.

Children are not extensions of you; they are their own unique, autonomous beings who are part of your life, but not part of your self.

Children are not in your debt; they don’t owe you anything for raising and providing for them.

Children are not servants; teaching them responsibility does not mean overburdening them with chores and caretaking responsibilities.

Children are not yours to keep; the tighter you try to hold on to them, the more determined they will become to get away.

Children are not perfect; their imperfections should be embraced, and they should be allowed to make mistakes without facing shame and ridicule.

Children are not obligations; nobody is obligated to reproduce if it is against their inclination, or would compromise their health and well being.

Children are not the future; the future begins with here and now with adults who create a world in which children are able to thrive, and create children who care about helping the world to thrive.

Playlists are the new tea leaves

On Friday on my way home from work, I was thinking about the removal of toxic people from my life. I know some people don’t like describing other people as toxic. In this case, I don’t mean that the people themselves are toxic, but that they’re toxic to me, or we’re toxic to each other. (But should anyone think that a person can’t possibly be toxic, just look at the U.S. government.)

The one lesson I’ve learned over the years is that you can’t completely rid yourself of anyone who has been impactful in your life in any way. Sometimes this is a wonderful thought, because all those people who influenced you for the better are, in some ways, still with you. But sometimes this is a rather distressing thought, because you realize that the bad shit has influenced you, too, and you can’t fully rid yourself of those influences. Our experiences and our brain wiring make us who we are, and we can’t control or undo either.

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“I came to explore the wreck”


Adrienne Rich’s poem Diving Into the Wreck is among my absolute favorite poems – so much so that I have three lines from it tattooed on my ribcage. I think what I like best about it is that it works on so many different levels, and continues to take on new meaning each time I read it.

If you’re not familiar, you can read it here.

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