So What Do You Do All Day, Anyway? (Disability)

“And what do you for a living?” “How’s work going?”

At parties and gatherings around the country, these two sentences are common conversation-starters. Neutral, not too nosy. A great way to get to know someone quickly or catch up after some time apart.

My responses lately have been something like: “I’m on medical leave from work right now, but I used to be a writer and editor.” “Well, I’m not at work right now, but they keep telling me they will take me back if I ever get well enough to return.”

The words escape my lips, and I realize with horror what I have unleashed: Lead balloons. Poison arrows. Absolute conversation-stoppers. At this point, people often remember that they need another bite to eat, another drink, want to check on their date or their kids or their dog. Anything to get out of this awkward spot with this strange person with whom they have nothing in common.

A few people resist the initial urge to run, and then the conversation can take an even darker turn. “So if you’re on disability, what do you do all day, anyway?” they ask. Or even better: “Wouldn’t you like to go back to work so you have something to look forward to in your day?”

Ahem. Let me rein in my frustration, shame, and anger for a moment. I had top ask myself questions like these when I first got so sick. “What am I going to do all day?” I worried, terrified. “What do I have to look forward to if I’m going to be so sick for the rest of my life?” Panic, panic, panic, the kind that makes you want to dive headfirst into food, call out for your mommy, or hop in the car and drive anywhere but here.

In a work-obsessed culture, I put a lot of myself into my job and measured my personal success largely by my professional success. I had friends and family, a spiritual life, and hobbies. But I took many of them for granted and didn’t always appreciate how they enriched my days.

Going on disability leave from work was a radical readjustment. Without work to set the schedule and priorities for most of my days, what would I do? Who was I as a person if I could no longer be a writer, editor, consultant, working professional? What would the ultimate meaning of my life be if I didn’t or couldn’t have a career?

Many people who are forced onto disability leave struggle with these issues and strive to find a new meaning, a new shape for their lives that is not summarized in a profession. Roles like wife, mother, friend, volunteer, advocate, faithful congregant, dog lover, knitter, and friendly neighbor become more central to our days than our old roles as working professionals.

Of course, as we are struggling to figure this out for ourselves, the “healthy” world is struggling to figure us out, too. “So if you’re on disability, what do you do all day, anyway?” they ask. They assume that my life must be awful… how can I really have a life without a career? I get a lot of “Gosh, I don’t know how you do it day after day.” (Thanks, I’m going to go kill myself now… you make it sound so awful.) Or “I would just go crazy from being at home all the time” (Well, I could make a snippy comment about you not having far to go in that regard, but whatever.)

Even the most well-meaning people lay it on me. At a recent family gathering this past weekend, a nice young man who understood my situation was heartened by the possibility of me returning to work. “It would be nice for you to have something to look forward to again,” he said. I smiled and said “Oh, but I have plenty to look forward to each day… exercise, physical therapy, reading, cooking, blogging, napping, keeping in touch with family and friends.” I hope he got the point. A day without work is worth looking forward to! Although I am happy that my medical leave/disability is temporary. I will get back to work eventually, with a new appreciation for how work is part (but not all) of my life.

I’m finally at peace with being "on disability leave," so the dumfounded looks I get from others, and the dead silences that expand to fill the vast distance between a healthy person and a non-healthy person… they don’t bother me too much anymore. I do, however, sometimes want to offer up bad, inappropriate, slightly deranged answers to some of these people’s questions. I’ll list some of them in a future post.

Comments

[Amy]

I know what you mean, ever since I stopped going to University because I didn't have the energy, I dread the question of "Are you in school?" I'm still daunted by not being able to achieve what I've been told is part of a 'normal,' 'happy' life: career, marriage and kids.

Right now I am on ODSP (Ontario Disability Support Program) and I don't go outside my house to work. Instead I work on my web site and consider that to be my job. However, I never feel confident in saying that's my job because other people don't understand.

It saddens me that society's view of how a person can contribute to the world is so limited. You don't need to have a conventional career or job to make a difference in the world or to be happy. I just need to remind myself of that fact more often.

[Valerie Riedel]

Thanks for your candid comment, Amy. The one plus side of illness is that it waxes and wanes. Today's situation won't last forever. There may be school, career, and family in your future. It may take longer to achieve your goals, and you may need to scale your goals to fit into your new life, but you will be able to achieve great things.

[Tiffany]

I love love love love love this post.
I can't even express how deeply I can relate.
I got to a point where people would ask me what I did (implying where I worked) and I would respond "I watch TV." (Pause) "I'm a professional TV watcher. The government pays me to do it."
Okay, so I was passive aggressive, but it felt good.

Thanks for this awesome post and this awesome site. I'm really glad I found you. I'm gonna add you to my blog listings, k?

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