When — despite the radical contingencies, the happenstances, that you know have determined so many aspects of your life, beginning with your very conception — you start trying to shore up its fragments into some kind of organization and meaning, your memory, despite its notorious unreliability, provides the most important information. It has already verified and falsified and winnowed the past in a way that begins to form, for you, patterns and through-lines. — Daniel Menaker, My Mistake
The question arises: Did my father act the way he did because of his symptoms or his personality? He died of a rare genetic disorder called Adult-onset Polyglucosan Body Disease (APBD). Symptoms of APBD include "gait difficulties" and "sensory loss predominantly in the distal lower extremities" as well as "mild difficulties in cognition (often executive dysfunction)." By the time he received this diagnosis last fall, it hardly mattered. He'd begun to have strokes after a year of other, often mysterious reasons for hospitalizations, and it seemed most likely he would die of a stroke.
The ABPD diagnosis followed 20 years of "no-diagnosis-means-no-prognosis" uncertainty. The only thing that seemed certain about his disease was that it was a progressive neuropathy, meaning that over time, more and more nerves died off, and he became less and less capable of moving his lower extremities.
What seemed less certain was how much of the Dad's behavior was due to his disease. Dad was a renowned slow talker, and before he got a wheelchair, a painfully slow walker. I referred to him as "Our father who walketh ten paces behind us." Would I have mocked him if I'd known his nerves were degenerating for a long time before he displayed more dangerous symptoms, like falling off his bike?
His speech could be so deliberate that at times I forgot what question he was answering. During his year of repeat hospital admissions, medical personnel would remark his slow speech, and I'd respond that he always talked that way. He was a mathematician, and enjoyed logical, precise, specific speech. Once he complained about people using "numeral," "number," and "digit" interchangeably. He maintained that he was truly confused by the colloquial blurring of definitions.
In the rehab center he went to after a storm of strokes, he had exercises where he was asked to name a set of objects. I held my breath as he stared at a pen, willing him to name it. After a long pause, he came up with, "Papermate ball-point pen." We laughed, his audience, in relief that he got it, understanding that he needed to show complete mastering of naming. Today, I thought, we have the naming of parts.
There were times when I wasn't sure if he was having trouble hearing, mentally processing, or being serious. He had a habit of repeating back nonsensical mishearings, and I told him firmly that it was important to me to know whether he was having trouble hearing or thinking. He persisted in what seemed like perverse cuteness until I asked the speech therapist in his rehab facility for help, and she suggested he use the prompt, "Say it again, please." Mostly, he did this. Mostly, I do it with my kids--except when I think it would be hilarious to repeat back the weird thing I thought I heard them say.
Symptom, or personality?
The ABPD diagnosis followed 20 years of "no-diagnosis-means-no-prognosis" uncertainty. The only thing that seemed certain about his disease was that it was a progressive neuropathy, meaning that over time, more and more nerves died off, and he became less and less capable of moving his lower extremities.
What seemed less certain was how much of the Dad's behavior was due to his disease. Dad was a renowned slow talker, and before he got a wheelchair, a painfully slow walker. I referred to him as "Our father who walketh ten paces behind us." Would I have mocked him if I'd known his nerves were degenerating for a long time before he displayed more dangerous symptoms, like falling off his bike?
His speech could be so deliberate that at times I forgot what question he was answering. During his year of repeat hospital admissions, medical personnel would remark his slow speech, and I'd respond that he always talked that way. He was a mathematician, and enjoyed logical, precise, specific speech. Once he complained about people using "numeral," "number," and "digit" interchangeably. He maintained that he was truly confused by the colloquial blurring of definitions.
In the rehab center he went to after a storm of strokes, he had exercises where he was asked to name a set of objects. I held my breath as he stared at a pen, willing him to name it. After a long pause, he came up with, "Papermate ball-point pen." We laughed, his audience, in relief that he got it, understanding that he needed to show complete mastering of naming. Today, I thought, we have the naming of parts.
There were times when I wasn't sure if he was having trouble hearing, mentally processing, or being serious. He had a habit of repeating back nonsensical mishearings, and I told him firmly that it was important to me to know whether he was having trouble hearing or thinking. He persisted in what seemed like perverse cuteness until I asked the speech therapist in his rehab facility for help, and she suggested he use the prompt, "Say it again, please." Mostly, he did this. Mostly, I do it with my kids--except when I think it would be hilarious to repeat back the weird thing I thought I heard them say.
Symptom, or personality?
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