(ă-nō’sō-dī-ă-fōr’ē-ă), Indifference, real or assumed, to the presence of disease, specifically of paralysis. [G. a- priv. + nosos, disease, + diaphora, difference]
I learned a new word today: anosodiaphoria. It is a medical term, not even in the Oxford English Dictionary, that means “indifference, real or assumed, to the presence of disease, specifically of paralysis.” It was coined by Joseph Babinski, discoverer of the famous Babinski, or plantar, reflex in which scraping the sole of the foot determines spinal cord damage. Babinski first noted anosodiaphoria in 1914 in a few paralyzed patients who were all “meh” about their paralysis. Another, more general definition describes anosodiaphoria as a “lack of emotional concern.” A recent medical paper on the subject is titled “Blissfully Unaware.”
My dad and I took my mom to the doctor today–specifically, to the neurologist to receive the results of her annual memory evaluation, an extensive battery of tests performed last week. It was pretty much unnecessary, given what we know:
- That her mother died of Alzheimer’s.
- That her sister had early-onset Alzheimer’s and was robbed of seventeen years of life starting in her late 50s.
- That my mom gets lost and can’t drive a car and can’t remember why (two accidents).
- That she has trouble forming new memories.
- That today she asked us at the breakfast table, as we were leaving, twice in the car, and again in the lobby of the doctor’s office, “Now, what is this for again?”
My mother’s neurologist is a young man of south Asian ancestry with luminous brown eyes and a quiet, fastidious mien. He spoke in soft, measured tones, and his approach to delivering news to patients in layman’s terms was studied, as he though he carefully considered each ten-cent word before he said it. His hipster bowtie was flawless.
After addressing my mom’s mysterious dizziness (I’ll tell you about that some other time), he summarized his colleague’s report. Memory exams are administered by a specialist, and the scientific literature has shown a preference for having the same doctor administer the tests over time, such is their subjective bias. According to the neurologist, the exam showed improvement in some areas, decline in others, and stasis in still more. It struck me that he was building to something, but was remembering back to that day in medical school when they explained how using certain words can cause your patients to shut down. “Cancer” is one of those words. “Alzheimer’s” is another.
Last year, this same neurologist told us my mother had “mild cognitive impairment,” but I knew there was nothing mild about her deficits. He described her condition as a “gray area” between normal and not normal and offered hollow assurances that lots of people find themselves there who do not end up with dementia. Today, he was a little more assertive.
“Overall,” he said, “there did seem to be a mild trend of decline.”
Such gentle language: the passive voice of “there did seem” rather than “you have.” The uncertainty introduced by the use of “seem.” It’s not a definitive, yes-or-no thing that has happened like, say, getting impaled by rebar that has fallen off the back of a speeding flatbed. Rather she’s just experiencing a “trend.” A trend is a process, a direction, but not necessarily a destination. The cruelly optimistic implication is that trends can be reversed. Furthermore, hers is a “mild” trend, like warming springtime temperatures or rates of marijuana use by senior citizens.
But the neurologist was just warming us up. My mother’s test results now point to “a mild stage of something more progressive, likely some form of dementia.” Whew. That’s a relief! I thought he was going to sell us car insurance there for a second. Dementia, yes, we’re familiar. My mother recently asked my dad if Jeb Bush was president.
Lest we get hopeful, though, he then offered that this form of dementia was likely not of the vascular type. My mom, who did a fantastic job of following along, interjected and asked for clarity about the form of the disease that she does not have. After explaining how some forms of dementia are due to blockages in the vascular system that nourishes the brain, the neurologist finally reached the crescendo of his plodding andante.
“The change in those domains [that she exhibited in her exams] are more associated with Alzheimer’s.”
It was the first time that word had been used by a clinician to describe my mother’s condition–the closest we have gotten to the Dreaded Diagnosis thus far. She took it like the taciturn Midwesterner that she is: stoically, silently. As far as she is concerned, there is nothing more to be said, and nothing more to do.
A few hours later, I asked my dad if I could read the report, which the neurologist had promised was written in “accessible” language. That’s when I learned my new word. And that’s when I realized how random and fragile the art of neurological diagnosis really is.
The report found that my mother’s memory did not decline. Great news! Except that her memory was “poor” last year and remains so, as does her learning function. She did experience decline in language (the ability to come up with the right word on queue) and in executive function (the ability to plan, organize, and conduct a task to completion), which I have often summarized as my mother “falling off a cliff, cognitively speaking.”
She asks sometimes about words–today she mixed up “affluent” and “effusive”–but thankfully her ability to her express herself has not yet been compromised. We have noticed the executive function thing, though. That’s when your mom is supposed to be getting dressed for her Golden Anniversary party, a fancy catered affair attended by fifteen out-of-town guests that was months in the planning and has cost thousands of dollars, and the guests have arrived and are all downstairs waiting, and she disappears into the bathroom for too long, and when you find her, everything in the bathroom closet is on the floor, because she started doing her makeup but went looking for a Q-tip, which she has in her hand, and then she got sidetracked somehow, and now she doesn’t really feel like “going out to dinner” anyway.
Her recent evaluation was neurological but also vaguely psychological, in that the clinician endeavored to understand my mother’s mood. Unfortunately, the test was conducted the day after said Golden Anniversary party weekend, when my mother was still high on being around people she loves for two straight days. She did great! The neurologist reported a “confound of any potential mood changes,” and he smiled adorably when he told us there was no sign of depression.
There was no sign of mood change when my mother raged at me and the front desk lady for no reason on the night of my father’s surgery?
There was no sign of mood change when the anniversary guests were waiting and my mom announced to my dad and me that she didn’t want to go, that she had nothing to wear (she said this while wearing a brand-new, custom-tailored Talbot’s suit purchased specially for the occasion), and that she wished my father was married to someone else so he could take that lady instead?
There was no sign of mood change last night, when my dad and I emptied the kitchen pantry trying to find the dog’s bowls–my mom hides things–and had the audacity to discard her priceless collection of 50 carryout containers and some of the 10,000 cafeteria napkins she’s hoarding, and in response my mom put herself to bed, hilariously fuming, “Fifty years of running my kitchen clearly aren’t good enough for you, so I will never go in there again.” No sign at all?
Not even on Christmas eve, when my mother told me that she thinks about killing herself every day?
Such a relief! And really good to know.
The doctor who did the report also noted that she showed signs of anosodiaphoria related to her condition. My dad and I looked it up together, and we puzzled over its application to my mother’s situation. But on the drive home, I think I figured it out.
My mother can’t remember my name, and someday soon she won’t remember me at all. But so long as she is still herself, she will never, EVER, think that it is ok to disclose the dark thoughts that plague her mind–and certainly not to a doctor, a person in authority, a man. She thinks her dementia is her fault, a terrible, embarrassing failure of her own making. And, while she will admit that it is real, she would rather die than talk about how it makes her feel. Hence whatever it was that she said or did to indicate anosodiaphoria, or “indifference to the presence of disease”: a shrug, a refusal to answer, or perhaps a firm statement like, “It is what it is.”
This isn’t the cheerful acceptance of the green-tea-swilling, yoga-pantsed, meditating Buddhist. No, this is the grim resignation of Ohio farm folk, people who canned their food, darned their socks, and survived barren winters in metal sheds while their babies died of typhus. That’s an actual thing that happened, to my mother’s great-grandmother, but the story’s impact on subsequent generations was profound. There are other stories too–like, the story of how my mother’s grandfather was such a cheap sonofabitch that he wouldn’t let his 40-something year old wife have her baby in a hospital, and he refused to summon a doctor until just before she bled to death. And the half-born baby died of asphyxiation. And my mother’s mother witnessed the whole terrible scene as a girl, and she never told her own daughter, my mom, that she loved her, until the Alzheimer’s devoured the part of her brain responsible for remembering that our people don’t show emotion. Yes, grim resignation is coded in our DNA.
Anosodiaphoria. You could tell, the doctor thought it was curious that my mother doesn’t seem to mind that she is losing her mind. In fact, she’s mad as hell, and since there is no rational place to direct her anger, she takes it out on everyone around her. I feel for her, I really do, at least in the abstract. But in the moment, I often find myself incapable of accessing the empathy, kind words, and genuine emotion I would bestow on literally any other human being in the same situation, up to and including Saddam Hussein.
The reason is because I still can’t quite separate out the fragile old woman my mother is at present from the passive aggressive nightmare she has been all along. As long as I can remember, her default setting is to cast everyone else as her tormentors while she bullies us all into compliance. My whole life, no matter what she said or did, no matter how terrible, I never received a single word of apology from her. And any suggestion that perhaps some elements of my childhood might have gone a little better (or just, you know, my failure to empty the dishwasher in a timely fashion) always resulted in outrageous, sarcastic accusations designed to pathologize any utterance of dissent: “You hate me. You think I’m the worst mother ever. You think I’m a monster.”
It’s a brilliant strategy, actually, because every fight ended with me apologizing. “No, Mommy, I love you, I’m sorry, I love you, I do, I’ll empty the dishwasher right now, I’m sorry, I’m sorry, I’m so sorry.”
At present, this tendency manifests as my mother’s refusal to offer any hint of apology when her memory problems inconvenience other people–like, say, when she compulsively threw away a bag containing $70 worth of hearing aid batteries, or she made me late for work when she hid my car key. Instead, she gets angry at us. We don’t respect her, we don’t care about her, we ignore her–when really, our entire lives revolve around her. My sister says I should pretend our mom has the words “I’m sick” written across her forehead. But what I know is true is that she was sick long before she lost her mind, and I am having trouble forgiving her for that.
Still, I rally. I take time off work, I show up, I eat shit for as long as I can stand it, and then I run away, often after saying something I regret. Then I hate myself for being unable to stay perfectly poised in the exact fraction of a moment where my mother lives, with no before or after, no old wounds let alone fresh ones, as though last night’s Great Tupperware Meltdown and the last forty years never happened.
I admit it, I have become hard. I exhibit a lack of emotional concern. I am indifferent to the presence of her disease.
I guess I have secondary anosodiaphoria, if that’s a thing. But none of us is blissfully unaware.