so sad today

I’ve long been a fan of Heather Havrilesky, so when I saw her interview Melissa Broder, the woman behind the formerly anonymous Twitter account, @sosadtoday, I knew it would be good.

I had no idea Melissa was a caregiver to her husband, or that @sosadtoday had anything to do with caregiving, until I read her interview with Heather.

What year did it start?
2012. That was the year I found out that my husband and I were going to have to move to L.A. because of his health. He has a neuro-immune disease and his killer cells don’t really work. His condition is like chronic mono, so he’ll be bedridden for months at a time.

I would get so depressed under those conditions.
I don’t understand how he hasn’t killed himself. It’s kind of a miracle. He’s one of these people with a real desire to live. I don’t get it. And he’s had it for so long — for 15 years — but it’s changed a lot. When he first got sick, he had a bad fever for three months, but then he was fine for a year. So when we met, that’s where it was. He could exercise, he could go out and drink, he could do whatever, and every now and then he’d have a relapse, but once he got better, we didn’t think about the fact that he’d ever get sick again. It was very easy to be in denial. But then as time went on, his spells got closer and closer together, so he’s never healthy now.

The fall of 2012 was when I realized we were going to have to leave New York, and also realized that the landscape of his illness had changed, there was no respite, and it became clear that it was a progressive illness. So there was no time to be in denial. I think the juxtaposition of that, plus just being a person who’s subject to panic attacks and anxiety disorder, and like, some other things, were like this perfect storm. I had a bad panic attack and then what happened was I was so afraid that I’d have another one.

Fast forward to my immediately picking up a copy of her book. (If you haven’t read Heather Havrilesky’s book, How to be a Person in the World, I highly recommend that, too.)

So Sad Today is very honest and very explicitly sexual. There is a lot of sexting and drug use. I listened to the audio book and it made me laugh out loud, which was a little awkward because I was in public.

In “I told you not to get the knish: thoughts on open marriage and illness” she addresses the story of her husband’s illness. She admits that she doesn’t feel like his story is her story to tell, even after 11 years.

I could relate a lot to Melissa’s situation, since we both knowingly married someone who’s chronically ill with something mysterious and undiagnosed and intermittent. We both moved in order to make it easier to have a life while one person has mobility issues and endless doctors appointments. We both did this while navigating an open relationship, at least some of the time. Neither of us had ever aspired to being someone else’s wife, never mind giving up our own lives to take care of someone else.

Her parents and friends were concerned about her choice to marry someone with a chronic illness. She counters with the fact that no one knows who they’ll be married to in ten years.

It can be a challenge to have a marriage that doesn’t look like other people’s marriages. With chronic illness and polyamory, things get twice as weird.

Melissa is as open about the guilt of living a life without him and the depression of a world that’s shrunk by chronic health issues as she is about her addictive personality and sexual fantasies.

One of the hardest things about having a rare illness that people don’t understand or doubt even exists means exhausting conversations about what it is that’s causing her husband to be so ill. Dealing with other people’s well meaning suggestions is something most of us can relate to.

Only the last part of the book discusses her role as a caregiver. Throughout the book she talks about being really uncomfortable with feelings, all the ways we try to control them, and how the only way to cope is to stop fighting how we feel.

I don’t want to be defined by [his] illness. I pretend, even to myself, that this isn’t hard.

Melissa explains how she started @sosadtoday and discovered how freeing it can be to open up about your sadness, share all the pieces of ourselves we’re ashamed of. There’s no cure for the existential angst we feel, but it doesn’t need to control our lives. Radical honesty — and a community with which you can be radically honest — is the way to stop drowning in the sea of despair and learn to swim.

Written by Cori Carl
As Director, Cori is an active member of the community and regularly creates resources for people providing care.

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