That word “disability” again

Richard after the brain-drain procedure, February 2011

A little over a year ago, Richard and I were discussing disability, specifically, whether we should file for Social Security Disability Insurance on his behalf.

He had by then weathered two brain surgeries, plus one procedure to drain a near-fatal accumulation of brain fluid. His recovery each time astonished his docs; his brightness—both in mind and spirit—seemed barely diminished.

So when his oncologist suggested applying for the disability pension, Richard said essentially, “No thanks.”

She looked directly at me and said, “Think about it. It could give you some breathing room and help you manage more easily.”

I didn’t like even hearing the word in the context of Richard. I looked up the definition:

Disability. n. A physical or mental condition that limits a person’s movements, senses, or activities.

It was hard to imagine my love as “disabled” when he sketched out an idea for a new sculpture, or commented incisively on a piece of my writing. But I had to admit that his ability to accomplish the more practical aspects of life was… impaired. Things once simple took him a long time; he was easily distracted.

In the end, after talking about the labels, he decided it wouldn’t hurt his sense of self. We applied for the pension, and his doc was right: that small monthly check freed me to do a better job of helping him live well with brain cancer, and die well too, when it came to that.

A silly moment, April 2011

I’ve had those discussions in my mind recently because living without him has forced me up against something I have successfully avoided until now: I’m disabled too.

Not in any way that might be obvious to others. But it’s become painfully clear to me now that I don’t have Richard to help out.

The most obvious symptom: my energy runs out long before the end of the day, and if I push myself, I pay with fevers, joints that feel like they’ve been pounded with a ball-peen hammer, balance wobbly enough that I need a cane, and brain fogs so intense that words become strangers and I cannot think my way out of a paper bag, much less a crisis.

I’ve been accommodating my own particular… disabilities for so long that they’re normal to me. It’s habit, for instance, to save energy: I sit down instead of stand when I can do it without drawing attention to myself; write from bed at first and then move to the couch, where I can sit sideways with my feet up; take baths rather than showers (it’s that horizontal versus vertical thing again, a crucial difference for my daily energy budget); I carefully schedule my outings and public appearances at the times when my energy is at its best, and as a result, so am I….

My limits come from having either Mixed Connective Tissue Disease or Lupus, depending on how the tests are interpreted. The label doesn’t matter to me—neither is understood well enough to know what causes it or might cure it.

The sunset from my couch…

I have managed quite well by adjusting my life to accommodate the symptoms, which means being very careful to live within the limits of my energy—once I overtax myself, my body’s systems go haywire and I am sick and miserable, wobbly and unable to think straight until I have time to recover.

I’d been considering my limits when a very knowledgeable and helpful representative of the Social Security Administration asked me point-blank if I was disabled, and then quickly said, “Let me explain why I’m asking.”

If I fit their definition, I am eligible for a monthly disability insurance payment (smaller than Richard’s because I’ve earned less) and, two years after qualifying, I’d also qualify for Medicare, compelling in itself, as anyone who is trying to afford health insurance will understand.

Both mixed connective tissue disease and Lupus are listed on the Social Security Administration’s list of qualifying conditions. My family doc is willing to write a letter in support of my application.

Pallid evening primroses out the bedroom door at dawn

Still, I haven’t decided to apply. Like Richard, I’m proud and I imagine myself self-sufficient. (None of us really are, but it’s a seductive fiction, especially for we westerners.)

Applying requires a huge investment of time and energy, and I have more than enough to handle right now. So much more than enough that I wake exhausted, having spent the night trying to figure out how I’ll keep all of those balls in the air. (I’m no juggler—that was Richard’s talent.)

Fortunately, it’s not a decision I have to make immediately, as his palliative care psychologist pointed out when I talked with her about it. I’ve got two years from the date of his death to apply, and in that time I can gather the information as I have energy, a bit here and a bit there.

First I have to decide if I can live with the label. Richard didn’t let it define him, and that gives me courage. I’ll give it time and see how I feel.