A fever, lying on the couch under the green blanket, feeling sorry for myself but more than that sorry for my kid, for his life that in this feverish insane moment looks like neglect. He just got home from school and he's playing video games and he just had an argument with the neighborhood kid and I can very easily imagine staying on the couch like this for hours. Here's his mother lying on the couch in a fever–but it's not even the kind of fever where you get chicken soup and time off from life. It's life, this autoimmune disease that comes and goes. It's come and gone every day or week since he was six, and now he's almost ten. He's seen me hobble around with a cane. He knows I have something up with my joints and something wrong with my thyroid. But now I don't care about those things. I just wish I could get up and do some kind of–what, cupcakes? Fall centerpiece arts and crafts with him? Things I never do when I'm well? Something. Instead it's screen time and brain rot and I am overwhelmed with what to make for dinner.

By the way–yes, I have tried and am trying everything. Sometimes when people ask if I've tried a diet thing to cure inflammation or acupuncture they mean to help but it makes me feel guilty, like if I just worked harder I would cure myself. I have a degree in this disease. Actually these diseases–I have two. Don't worry about it–it's okay. What I'm thinking about is not the sickness in the abstract but my life here on the couch and what it means about my parenting.

And here I am on the couch, dipping down into visions where I am a bad teacher and a mediocre mom and everything. By the way, in case someone on my tenure committee is reading this: I am an awesome worker and everyone will tell you so, and I get everything done that everyone asks me to do. Think of it this way: the time that other people spend drinking, watching sports, or getting their nails done or playing Candy Crush or cooking fancy meals, I spend sick. And I have lots of good patches. I'm just in a bad patch. But it all comes out in the wash. It's fine. And I'm not even that much of a drain on the health plan, in case anyone is cruelly evaluating me on a monetary basis: some scrips and blood tests and mostly shoulder shrugs and the obvious statement: this is incurable. Easy. And I'll be a good worker for a long time, and I am like Neo in the Matrix with pain and discomfort, a ninja. Like being a mom, this constraint has made me work smarter. Rah rah.

But back to the level of humanity, it's difficult, as humanity can sometimes be. Everyone gets sick. And the recent blood test results seemed worrisome but in a way that I couldn't interpret, and I put in a call to the doctor today and didn't hear back, and I didn't hear back either from the other doc who ordered the tests. So I am on the couch wondering what those numbers mean and if they can fix it and wondering why I have to wait for three more weeks to see a new specialist because my last brilliant specialist had to close her practice. At least I have insurance. If we were Canadian I wouldn't have to do that little simpering dance of gratitude for what is a human right. But anyway.

There's so much I should be doing. I didn't feed the bearded dragon lizard his chopped vegetables. I need to put a load of clothes in the dryer. And I have deep suspicions that my insights about Ben Franklin's Autobiography won't seem very insightful to the honors students in my seminar tomorrow. I responded to a few student emails and slept for an hour. I worked for six hours this morning but it never seems enough.

My son comes upstairs and I tell him out of guilt that he needs to get off screens in a half an hour and then he can help me figure out what to cook for dinner. He says okay and I go back up and lay on the couch and start to cry because he's so good, and I have a half hour before I have to do something practical. I text a friend with autoimmune stuff and she realizes pretty quickly that I'm losing it, so she calls me instead and she makes me laugh and says, “You want to make your son cupcakes? Do you actually ever make cupcakes?” No, I said. I guess I must be a bad mom.

You're a great mom, she says.

I feel like crap and I feel afraid of everything, I say. When I have a fever I get this thing I call “fever doom” and I can't think straight and my husband is working tonight.

I get that too, she says. Tell your son to make a PB&J and he'll be happy.

He comes upstairs and I start to cry and say, like I always say, It's not you, I'm not mad at you. I'm just not feeling good. You know that, right, buddy? It's my joints and my thyroid.

He nods. Let's go to the library and get Chinese food, he says.

Okay, I say. Good plan.

We go to the library and he checks out a Pokemon game and a video and a book in a series he likes. Both inside and outside he is scaling walls, sliding down banisters, attempting Parkour. He is not ADD, he is HYB (healthy young boy). On the way out a guy looks at my son as he leaps in midair between two concrete blocks and says, “I wish I had his energy.”

We get Chinese food and on the way we talk about why it's good to buy from local businesses. I'm not sure when this conversation started, maybe a month or six months ago, but it's been on his mind lately for whatever reason, so we often list the local businesses we buy from. Tonight we talked about why it might be better for the family running the Chinese restaurant to work for themselves rather than having to send their money to McDonald's Corporation.

Okay, I thought. He's getting vegetables in his Chinese food and we're talking basic economics. I can't do fall centerpieces but I can do social justice economics.

We drove home and unpacked the Chinese food and I stared at the unwashed dishes in the sink. This is it: the sink, and my hands and wrists burning as I grab the first glasses to put them away. So. Tired. But we keep on, and I tell him to get out the soy sauce for him and the fish sauce for me. Eat your carrots, okay? You need them to get strong. And the fever hasn't gone anywhere, and I pour him milk, and he tells me to come downstairs and sit with him. You can type on your iPad, mom, he says. I can't see much; it's like the edges of my vision are gray, but that makes things simpler.

Tonight I will tuck him in and go right to bed because extra sleep helps, and I hope in the morning I will feel better and get calls from doctors, and I'll drink all my special potions and do my special vitamins and relaxations and be the best mom I can be. And he's already the best son. And this won't be cured because not everything is a princess story, but– but what…. I feel the urge to write “That's okay” but it's really not okay. It just is. And it's okay at some larger cosmic level that I can sometimes see and sometimes utterly lose sight of.


3 responses to “Autoimmune Parenting”

  1. “And he’s already the best son. And this won’t be cured because not everything is a princess story, but– but what…. I feel the urge to write “That’s okay” but it’s really not okay. It just is. And it’s okay at some larger cosmic level that I can sometimes see and sometimes utterly lose sight of.”
    Thanks for sharing, Sonya. Beautiful, as always. Heart-fully beautiful.


  2. My mom got her diagnosis of RA when I was 7 or 8. As far back as I can remember she was sick. Good days, bad days. Sleepy days and cranky days. She rarely complained to me outloud but I was always aware of the elephant in the room…she hobbled, dropped things, had surgeries, went to doctor after doctor for things like ‘gold shots’ and and fell asleep under afghans even in the summer. My dad was protective and would make excuses for her, but mom would shrug them off and do what she wanted to anyway. It just took more time. I didn’t realize back then, or even when I was an adult, the extent of what she hid from me in order to maintain a ‘normal’ life. I bet she had many of the same thoughts and worries for her only child, who spent most days just playing by herself while mom took a nap. In my junior high and high school years I started to become self conscious, embarrassed by my classmate’s questions of ‘why does your mom walk that way?’, and ‘what’s wrong with her hands?’ It was impossible to hide in a small town, where most of my friends would have her as the gifted teacher, and pretend that I wasn’t her daughter. I regret those years. I bet she would have given her right arm, and possibly her left too, to not ever have been acquainted with Mr. RA. But as a child, she was just mom, that was how she was, and I didn’t know any different. It wasn’t until recently, after being diagnosed with my own pain syndrome, Mr. Fibro, that I truly started to understand the sacrifice and pure raw tenacity that she must have had to make it through all those painful years. I can assure you that your son has a wonderful mom, a mom who will do all those same things at times only because life is worth living for him. He may not understand the depth of this sacrifice in his youth, but I promise you, when all is said and done, he would not trade you in for a different mom, Mr. RA or not. And, if he is anything like his mom, he will grow up with such insight and empathy shaping his life because of it. We need more of those people in this world Sonya. He will be just fine.


Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: