It Sucks!

There’s a story about your disabled life that you tell other people and a story you tell yourself. You don’t go around telling others how exasperating and dispiriting and a drag this life can often be. They don’t want to hear it and you don’t want to amplify it. It does you little good. From the moment I had my first visit after I was injured, I knew my job was to paint a rosier picture than they were imagining. I’d make a lame joke about hospital meatloaf or being awakened at four am by a dyspeptic nurse. Grouse about everything in sight except yourself. Leave the big feelings of being crushed, broken, and entrapped to late-night conversations with that other voice in your head.

After a while, you get good at it with lines like “It really isn’t a death sentence” or one I used on television lately: “Being disabled is not a curse. It doesn’t mean you are condemned to lead a sad and lonely life.” Clearly, sitting in a wheelchair, that was the right sentiment to put out there. Cursed is too big a word for the bedevilment a disability invites and you may get sad and lonely, but it’s not a permanent, never-changing condition. In very few cases, is it “a life.”

But I think we do a disservice to ourselves and others if we become too skilled in hiding or sugarcoating the true consequences of our disability, which, of course, is a different matter for each of us. Telling the truth about a disease – without going overboard – can be enlightening to a lot of people. The public airways in the US, especially the last five minutes of the local news, are entirely filled with positive, uplifting, and designed-to-be inspirational stories about living with a disability, usually, focused on kids. That’s fine: “Inspiration porn,” as it’s called, may, in all its schmaltziness, actually open some eyes. Or, conversely, breed cynicism.

This leads me to Christina Applegate, the actor; after a spectacular career, from “Married…With Children” to the current “Netflix” series, “Dead To Me,” she suddenly contracted MS and joined the company of other recently disabled actors like the great Terri Garr, Jamie-Lynn Sigler, and Selma Blair. I don’t know Christina Applegate, but she is apparently not one to mince words or sugarcoat anything, especially MS. In a recent Vanity Fair interview, she lays it out. Besides the quote that’s the title of this piece, she explains: “With the disease of MS, it’s never a good day. You just have little s***ty days. People are like, ‘Well, why don’t you take more showers?’ Well, because getting in the shower is frightening. You can fall, you can slip, your legs can buckle…It’s exhausting.”

There’s more, but you get the gist. She concludes by reiterating she may stop acting on camera and is working on a custom walking stick with her name on it and the slogan “F**k you MS.”

I have a number of friends with MS, but they rarely open up about their problems. And, in fact, rarely do I. But in this one balls-up, truth-telling interview, Ms. Applegate taught me a lot about this horrid disease. One more point: when, on occasion, well-meaning but uninformed friends suggest she do this and that to feel better, she tells them to “bug off” (my word). She says, “I’d rather just lie here and cry or do whatever I need to do right now to process this.”

It’s good to be positive and energetic and quietly fearless in the face of any disability. That’s the right message. But sometimes the truth occasionally hits you; a few disabled friends have suggested lying in bed for a day and just recharging. I haven’t tried it myself but I’m putting it in my toolbox.