This blog is one of a series that Alix Kates Shulman wrote for Psychology Today about her life after a shattering accident left her husband with a brain injury and dementia. She describes a roller coaster ride many caregivers will recognize, but these blogs are also a tender love story—the gist of it is captured in the title of her deeply moving memoir, To Love What Is (2008). Published by Psychology Today on February 12, 2009.
Before the accident that left him like someone with advanced Alzheimer’s, my husband was an artist. After the severe injuries to his brain's frontal lobes, centers for the "executive functions" that enable us to conceive and carry out plans, he found it difficult to make art. Hoping to get him drawing again, I fixed up an "art table" and, as suggested by an art therapist, sat with him for at least ten minutes a day while he drew.
Some of Scott's post-fall art was continuous with his previous work, but most of it was unlike anything he ever did before—especially the group of drawings consisting of one or two words fancifully drawn in many colors and designs: Why?; Why not?; Yes; No; Yes No; Maybe; No!; Yes Yes Yes; OK; OK Maybe; Could Happen.
Are these the questions he pondered as he lay on the couch looking off into space? Are these the concepts his injured brain had to grapple with? I can think of no drawing or painting from before his fall that depicted words, much less such primal words as these. His new drawings stripped reflection down to its essentials: why, why not, yes, no, maybe—so much simpler than the first post-fall writing he produced for the speech therapist at the rehab hospital:
The Earth is the central organizer for thoughts, concepts, and progressive deeds.
Our births are real but our deeds are very random.
The therapist saw in these sentences only the disorganized ramblings of a mind afflicted with fluent aphasia, but to me they seemed reassuring, revealing that he was still capable of deep reflection. To atheists like us, the Earth, that is, the intractable world of matter, is indeed the basis or "central organizer" of consciousness—meaning "thoughts and concepts." Our births are real, but after that, all bets are off. Once you are in this world, randomness rules—look at what happened to him! Just so, the new drawings—Yes, No, Why, Could Happen—seemed to summarize the lessons of his accident: anything can happen at any time, nothing is guaranteed.
When he had made enough of those startling, new drawings, I decided to exhibit them in an empty loft in our building.
Of the 60 people who came, most hadn't seen Scott since his accident. He pretended to recognize each one. When they expressed delight at how surprisingly well he looked, he had no idea what they were talking about. But he was able to answer each question as if his response bore some relation to the truth, and they never guessed his disability.
That night and the next day, while the art remained up, he kept thanking me and saying how happy he was. But after the show came down, he had no memory of it, not even that it had occurred. And I had to face the recurring question: Was it worth the effort? If so, for whom? I had thought it was for him, but if he remembered nothing? Then was it for the guests, who were misleadingly reassured about his condition? For me?
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The Silver Century Foundation promotes a positive view of aging. The Foundation challenges entrenched and harmful stereotypes, encourages dialogue between generations, advocates planning for the second half of life, and raises awareness to educate and inspire everyone to live long, healthy, empowered lives.
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