Love and Dementia

To love what is: The caregiving life.

The Dance of Experience and Time

Until Scott's injury, I divided experience into two opposing kinds.

Before Scott, my beloved husband, fell from a sleeping loft, sustaining the devastating traumatic brain injury that transformed our lives, I divided experience into two distinct kinds, both of which any satisfying life depends upon. The first consists of those pleasurable transitory experiences, often sensual--like eating, sex, art--that quickly vanish. The second is the kind of stable, future-oriented experience you build upon--work accomplished, knowledge accumulated, habit inculcated, skills expanded, resources conserved.

But at some point in a long life the future begins to seem increasingly illusory, or at least a bad bet. Keep accumulating knowledge, conserving your eyesight and your money--for what? At that point it may be time to forget about self-improvement and start to read only what grabs you; ignore the calories and pig out; stay up listening to music half the night; take in a movie in the afternoon.

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I had begun to brood on this dilemma back when we entered our seventies, wondering if the time hadn't come to start rebalancing our accounts by turning our sights from the future to the present and ourselves from ants to grasshoppers, who--face it--probably have more fun. As addicted as ever to hope, which always faces forward, and with no diminishment in energy despite my age, I knew it might take considerable effort to pull off such a change, but I was ready to give it a try.

Then, with Scott's accident (as I recount in my memoir TO LOVE WHAT IS), the longstanding relationship between present and future in our lives abruptly collapsed. Whereas I, fixated on healing him, examined minutely everything he said or did for its bearing on his eventual recovery, he, whose disability left him ignorant of the day, the month, the season, the year, and unable to remember the previous moment or think ahead to the next one, could conceive of nothing but the immediate present. Which meant that the kind of experience he had spent his life accumulating in order to expand his capacities became impossible for him, just as abandoning myself to the pleasures of the moment became impossible for me.

Dancing, for example, which I'd always done for the sheer instantaneous joy of it, became for me primarily a means of exercising his muscles to build up his strength. Instead of each of us partaking of both kinds of experience, as we always had, after Scott's brain injury I found we had no choice but to divide the two kinds between us, forcing me to abandon any carefree sense of time and forcing us both to inhabit disparate time frames. With his short-term memory completely shot, he dwelt in the present moment, while I, focused on the prospect that my efforts would heal him, found myself living in and for the future. Which meant that from the time of his accident on, we were permanently out of sync, except on those rare occasions when we came together to rendezvous in our common long-term past.



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Alix Kates Shulman is the author of 14 books including the best-seller Memoirs of an Ex-Prom Queen and a memoir about life with her brain-injured husband, To Love What Is.

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