Genova’s 'still Alice' for Ghanaian scientists, families & policy makers
“There are an estimated five hundred thousand people in the United States with early-onset Alzheimer’s disease. Early-onset is defined as Alzheimer’s under the age of sixty-five. Symptoms can develop in the thirties and forties” (Lisa Genova, “Still Alice,” p. 286-287).
ALICE’S EVOLVING MEDICAL DILEMMA
The expert, experimental hands of Prof. Alice Howland’s physicians periodically transformed her into a mourning paradox, a tormented doppelganger of a once-formidable intellectual presence. In other words Alice became a dangling pawn in the experimental games of others (p. 101). This may actualize in some instances when what appears as vigorous pursuit of diagnostic certainty is somewhat constrained by the nagging, extravagant oversight of experimental conceit.
And yet, the etiological nebulosity of certain diseases such as Alzheimer’s may not necessarily be defined by direct symptomatic parturition of experimental conceit itself—after all. It may as well be that, this underlying specter of etiological haziness is, itself, borne out of the implicit complexity of biological neural network systems. Overall, the intrinsic intersectionality of genetics, environment, and lifestyle choices further complicates the epidemiological evolution of complex diseases.
We see how this formulaic caliber of intersectionality ostensively plays out in neuroscientist Lisa Genova’s popular novel, “Still Alice.” In this bold, sensational work of realistic fiction, Alice, an accomplished academic and the eminent William James Professor of Psychology at Harvard University, was diagnosed with early-onset Alzheimer’s at age fifty, perhaps surprisingly contrary to those conventionally diagnosed at sixty-five—and above! The scourge of dementia would progressively become an underlying characteristic feature of her inner conflictual fireworks.
Initially she found herself in a state of grudging denial. Though not a mnemonist per se, this world-renowned psycho-linguistics expert was known for her eidetic memory among her teeming students and faculty colleagues. And then she began experiencing inexplicable episodes of recall lapses. One notable instance of these incidents of recall lapses happened in the formative stages of her disease when she failed to tell Eric Wellman (p. 51), the head of the psychology department, and her former Harvard colleague Eric Greenberg (p. 72), now at Princeton University, apart. Lisa writes (p. 52):
“Memory disturbances like these were rearing their ugly little heads with a frequency that ruffled her. She’d been putting off calling her primary-care physician because she assumed that these kinds of forgetting episodes would simply resolve with time…”
What Lisa is in effect saying is, Alice no doubt had an inkling of her episodic memory lapses, yet she chose the armor of dilatoriness over seeking immediate redress from health experts. The point is that early diagnosis in these matters is extremely important, inherently because there exists a far greater potential for forestalling or even ameliorating the symptomatology of disease degeneracy than if personal habituation to, or the absorbing charisma of, dizzying nonchalance were allowed to either take over completely or usurp the strategic prioritizing of early intervention regimes across the insidious wavelength of epidemiological actuation. Thus Alice’s grudging dilatoriness may have aggravated her condition—in the long run. Here is what Dr. Davis, the former’s neuropsychologist, had for her husband Dr. John Howland, a Harvard cancer cell biologist (p. 334-335):
“Well, there are probably a few things going on here. Her illness probably started long before she was diagnosed last January. She and you and your family and her colleagues probably disregarded any number of symptoms as fluke, or chalked them up to stress, not enough sleep, too much to drink, and on and on. This could’ve gone on easily for a year or two or longer.”
And those were exactly what happened. Alice took to, or rather opted for the cavernous possibility of, diagnostic misattribution as a temporary measure aimed at circumnavigating the objective reality of her evolving condition, a rather questionable approach very untypical of a rational, pragmatic scientist and profound thinker such as her. It is also not too clear whether her portmanteau of insane itinerary, teaching and conjugal responsibilities, research activities, extensive reading as well as intense writing and publication efforts is sufficient to explain away the subtextual temperament of her untidy dilatoriness.
More important, Lisa does not shy away from the more nuanced observation that Alice and others may have conveniently resorted to a set of diagnostic regimes, including, but not limited to—menopause, depression, vascular events, poor sleeping hygiene (sleep deprivation), delusions, stress, exhaustion, stroke, jet lag, brain tumor, confabulations, and tight schedule, as the bases of her presumed condition—perhaps also as a result of the lingering question of diagnostic uncertainty. This observation however becomes clear as the story unfolds in Lisa’s classic text.
Fortunately, Alice’s brain MRI turned up negative, the same as her blood work, even though her doctor recommended additional blood work and lumber puncture (p. 88). The additional blood work and lumber puncture test turned up negative, and it was also understood that she did not have silent strokes, cerebral vascular disease, HIV, a vitamin deficiency, cancer, mitochondrial disease, masses, and hydrocephalus (p. 102-103). Nothing turned up negative in her cerebrospinal fluid as well (p. 105).
She later tested positive for the PSI mutation (p. 127), a mutated gene for Alzheimer’s, despite John’s confident opinion that her genetic screening would turn up negative (p. 125). Dr. Davis further ruled out “examining the histology of the brain tissue, which requires either an autopsy or a biopsy” as unnecessary. His argument was that there was no “dementia protein” in her blood due to the absence of brain atrophy on an MRI (p. 104).
So Alice ended up with a “probable Alzheimer’s.” Dr. Davis administered a battery of neurological exams/neuropsychological tests to her, from Stroop, Raven’s Colored Progressive Matrices, Luria Mental Rotation, Boston Naming, WAIS-R Picture Arrangement, Benton Visual Retention to the so-called NYU Story Recall (p. 101). The doctor also put her on medication (p. 105-106). He also handed her an Activities of Daily Living questionnaire for John to fill out (p. 107).
Alice eventually went to see Dr. Tamara Moyer, her physician for twenty years, who then recommended a mammogram, a brain MRI, and blood work. The recommendation was, among other things, to help her make a definite decision about whether to rule out any unlikely etiological variables—given the intricate nature of the multifactorial dimensions of disease causation (p. 67). Indeed, Dr. Moyer was also responding to one of her Alice’s salient remarks. Alice had been drawing a tenuous correlation between her inexplicable quirks of memory lapses and her supposed menopause, to which Dr. Moyer responded with the following crisp explanation (p. 66):
“The symptoms of memory disturbances and disorientation listed for menopause are secondary to poor sleep hygiene. Those women aren’t coping well cognitively because they aren’t sleeping. It’s possible that you are not sleeping as well as you think you are. Perhaps your schedule and jet lag are taking a toll, perhaps you’re worrying about things throughout the night.”
With these informed statements indicting her client’s possible nonclinical suspicions, Dr. Moyer cautiously yet expertly exercised a sweeping dismissal of Alice’s flimsy speculative correlation. Further, it was not as if Alice was certain she had caught up with menopause yet. Rather, she may have emotionally fallen on her relatively recent episodic volcanic expectoration of recall lapses to underscore her perceived menopausal or climacteric status. This somehow makes sense in the specific context of her collateral experience of erratic menses.
But Dr. Moyer advised her not to trouble her head about that very fact, as she was already within the expected onset age limits for menopause—which hovers between forty-eight and fifty-two (p. 65). Yet Lisa also notes that (p. 148) “the symptoms of Alzheimer’s disease didn’t manifest until after the reproductive years.”
At the end of the day, it is also possible that Alice saw in the turbulent fuzziness of those circumstantial clustering of biologic events the haunting seeds of her evolving dilemmas and potential medical doom.
The question now is, knowing that John loved her mind and that telling him about her diagnosis would probably have caused him to interrogate his love for her in her newfound medical status (p. 116), what did he exactly say once she finally opened up to him about her medical condition? Here is John’s tentative response according to Lisa (p. 117-118):
“There’s nothing wrong with you…Everyone forgets things. I can never remember where I put my glasses. Should this doctor diagnose me with Alzheimer’s, too?...All right, so you’ve been forgetting things, but you’re menopausal, you’re stressed, and your father’s death probably brought back all sorts of feelings around losing your mom and Anne. You’re probably depressed.”
His dismissive riposte did not survive scientific opinion, though. Alice took the next step. She broke the news to her children, signaling a watershed moment in the life of her family (p. 149-153).
Yet her esteemed intentionality would come at a prohibitive emotional expenditure, not to speak of the huge cost of financial and familial burden (p. 140, 166). There is no doubt that the emotional and financial costs were a natural consequence of her evolving condition, something for the family had to bear as a unit.
What has not been said thus far is that, when she was finally handed the unexpected diagnosis, namely, her living death certificate or obituary, she instantly took on an assumed status-symbol of suspicious curiosity in her shaken wakeful immanence—her consciously confused immanent existence.
Even at one point in her medical odyssey her equally intelligent and rational and smart and pragmatic and well-informed husband, John, would not ignore the temptation to conceptualize her as an artifactual fantasy—from the point of view of his exclusive ecosphere of animal experimentation. As regards this very matter, Lisa descriptively notes (p. 191):
“More and more, it seemed he couldn’t bear to look at her. When he did, it was with a clinical eye, like she was one of his ‘lab rats’” (emphasis added).
Alice’s early-onset Alzheimer’s diagnosis and deteriorating condition had managed to transmogrify a pragmatic, rational and scientific mind into a seemingly frustrated, superstitious and visually outspoken automaton of a husband, now infinitely capable of reducing another redoubtable presence of mind to a suspicious shapeshifting and therianthropic formula. John ended up clothing his wife in a staged rodent-like, living taxidermy.
But he still loved her in spite of her debilitating condition—he accompanied her on her jogging routines, made sure their home was safe for her, that she took her medications, assisted with some of her daily living activities (including dressing her up on one occasion when she found herself incontinent), and showed her affection.
What more could a responsible wife ask for from a doting husband? Except on one occasion when she told him—“Oh, fuck you”—in response to his suggestion that they buy a treadmill for her use as his tight schedule would not always guarantee his being around for her jogging routines.
Here, though, Lisa constructs a troubled infrastructural characterology whom she made to look more like a sixteenth-century alchemist than a progressive modern-day vigorous thinker in absolute control of a critical, prodigious mind, a moirologist of a mind apparently lost in a patronizing jungle of uncaring misogyny. As it is the thoughtful and visual eloquence of his reductionist approach toward the charismatic personhood and conditioned diseasedness of his adorable wife in neurologist Dr. Davis’ office, admittedly failed the test of objective, conscious romance. He may have seductively given way to his bottled-up anger or internalized desperation, frustration, or even fear of the unknown to have the better of him. This culminated in the instantaneous shredding of his threshold resistance to the germinating seeds of negative emotionality into undesirable smithereens.
This is not to say Alice’s evolving condition did not exert an excruciating toll on the other members of her nuclear family (p. 246-254). It surely did. In fact her condition did more. We see alarming streams of scalding arguments erupt now and then whenever John’s decision to accept the prestigious, highly competitive chairmanship position of the Cancer Biology and Genetics Program at Sloan-Kettering, based in New York, came up (p. 306, 316, 319-322, 355-361).
Those nagging arguments set John against the rest of the family, an unhealthy development in light of the deteriorating condition of his wife’s situation. For instance, Alice and two of her children, Anna and Lydia, strongly objected to what they saw as his selfish desire to accept the position without taking his wife’s emotional protestations and health into consideration. Anna cornered her father in one of those argumentative episodes with the following retort (p. 359):
“It’s like you don’t get that she’s not gone yet, like you think her time left isn’t meaningful anymore. You’re acting like a selfish child.”
Alice nonetheless continued to oppose her husband’s decision to relocate with her husband from Massachusetts to New York, with the full backing of her two outspoken daughters. She resisted because she may have developed an emotional, aesthetic, and intellectual attachment to the city of Cambridge, Massachusetts, the glorious home of Harvard University, in addition to the more promising fact of her staying within spitting distance of her prospective or expected grandchildren (p. 169).
She would also not accept her husband’s decision to contract the services of a home attendant or a home health aide to care for her (p. 357), supposedly when they had finally settled in New York, activities-of-daily-living chores Anna and Lydia had willingly promised to provide for their mother. Their high-spirited arguments boiled down to an essential fact of life, which was that no outsider could possibly have replaced the kind of emotional attachment and unbridled love they were willing to extend to and shower on their mother. Said Anna to her unbending father (p. 357-358):
“And a stranger isn’t going to know her history and memories like we do. We can sometimes fill in her holes and read her body, and that’s because we know her…She’s not a burden, she’s our mother.”
The adamant Lydia to her father (p. 358):
“Dad, this is our last chance to spend time with her. You can’t go to New York, you can’t take that away.”
During of those heated arguments John stormed out of the room, slamming the door shut behind him. Lisa describes this unfortunate event thus (p. 360-361):“leaving the women and the babies....startling the baby in blue, which had just fallen asleep in the mother’s arms. It wailed. As if it were contagious, the other women began crying, too…Now, everyone was crying—the pink baby, the blue baby, the mother, and the woman next to the mother…”
SIGNIFICANCE OF LISA’S LITERARY TECHNIQUES
The phrase “the mother” is not Alice, neither is “the woman next to the mother” a stranger in the Howland household. In fact the phrase “the mother” is Anna, who had recently given birth to twins, a boy and a girl, while “the woman next to the mother” refers to Lydia (Lisa also refers to her in some places as “the actress” (p. 395), the same Lydia who had an inkling of her medical condition well before her older siblings actually did (p. 99, 136, 152, 243). Elsewhere Lisa used “the man,” “a man,” or “the kind stranger who had saved her life” for her husband. John managed to save her from what could have been a serious vehicular accident involving his wife. Alice fell nonetheless, hitting her head against a sidewalk (p. 379-380). She sustained no physical injuries.
What are the reasons for this? Lisa may have adopted these literary techniques to reinforce both of Alice’s deteriorating and deteriorated states, states beyond which she found it almost practically impossible to directly acknowledge or identify her own children, the self, and her environment—each of which had assumed a curious state of anonymity in her peculiar isolated existence. This may also be why Lisa tends to use italicized typefaces or typography sparingly in certain places to help readers keep track of the interior architectonic immanence of Alice’s slowly declining faculty.
Apparently she was not of this world in many a situation, that world she alone occupied on a whim. It was as though she had come up against a non-penetrating dissociative wall—a mental cul-de-sac—as though she had been permanently locked up incommunicado—in a strange autoscopic sarcophagus, irretrievably buried deep down Mount Everest. Lisa puts this in the proper context for her readers (p. 331):
“More and more, she was experiencing a growing distance from her self-awareness…”
Lisa provides a number of examples where her literary techniques are concerned. In one instance Alice failed to recognize her vacation home (p. 381-383). In another instance she said “I miss myself” (p. 387). She also failed to accept or recognize her mirror image (p. 384), brushed her teeth with a moisturizer (p. 349), smelled but did not know she had to take a shower to get rid of the repulsive odor (p. 349-350), tried to call her husband with a television remote control (p. 349), could not identify her own daughter Anna after she had given birth to twins (p. 351-352), forgot a much-anticipated trip to Chicago (p. 118), mistakenly entered a neighbor’s kitchen and began to prepare a cup of tea for herself (p. 269), experienced enormous reading, retention and comprehension difficulties (p. 208), went to class to teach but forgot to teach (p. 250)…
She put her Blackberry in her freezer and forgot about it (p. 328), unsuccessfully tried putting on an underwear rather than a sports bra (p. 274-275), went to the bathroom to pee but forgot to pee (p. 208-209), headed for the utility closet to pee rather than in the bathroom (p. 210) and ended up peeing on herself (p. 210), went to her office thinking it was morning only to realize it was middle of the night (p. 186), could not identity her daughters in a photo album (p. 90), told her doctor she had not been sleeping when, in fact, “she’s been sleeping like a baby” (p. 176)… Lisa on why Alice sometimes did not sleep (p. 176):
“…but I have this idea that the Alzheimer’s can only kill off my brain cells when I’m asleep, and that as long as I’m awake and sort of on watch, I’ll stay the same.”
No wonder Lydia referred to the debilitating symptomatology that forced her mother under the commanding weight of Alzheimer’s as “that sounds like torture” (p. 226), while Anna derogatively characterized a victim of Alzheimer’s as “a mindless zombie” (p. 150). Lisa herself likens Alzheimer’s to “a blazing fire” while stimulatingly making the case that it is “an entirely different kind of beast. There were no weapons that could slay it” (p. 168). The moment Alice wished she had cancer rather than Alzheimer’s says a lot about her state of mind (p. 167-169). Was she unhinged and disinhibited then? The truth is that she was merely an unwilling victim of an intimidating, uncompromising, and incurable disease.
All these strong sentiments and instances of forgetfulness do not take away the fact that Lisa uses her techniques in other places as well, and that these techniques which are probably meant to serve as rhetorical signposts and landmarks for the reader mark out the progressional contours of Alice’s disease from its early-onset stage to its late stage. These techniques tease out other subtle sinusoidal episodes of the disease that may not otherwise be conceptually visible to the casual reader, largely from the viewpoint of the text.
There is no question that the sheer narrative power of Lisa’s text, and her skillful deployment of rhetorical devices, fully captures the underlying rhythmic complexity of Alice's raging Alzheimer’s disease.
A FAMILY IN EMOTIONAL CRISIS
Finally, and this is very important, it appears Lydia, her elder sister Anna, and a hired hand later took turns caring for her in Massachusetts (p. 391-394). My suspicion is that Lydia may have finally decided to settle in Massachusetts, having settled for Brandeis University at the expense of New York University’s prestigious school of performing arts. My other suspicion is that Alice’s husband may also have eventually accepted the New York offer, likely with the proviso that he left his wife behind in the competent filial care of Lydia and Anna (p. 394-395), with Tom, Lydia’s and Anna’s brother, occasionally stopping by to check on his mother when he was not consumed by the absorbing bonfire of school work.
And yet, it is also equally likely that he did not accept the New York offer. On the other these speculative suspicions appear to gain on a dangling subtext of rhetorical currency—from the point of view of the internal dynamics of the text—given that Lisa does not provide explicit internal evidence that lends credence to the fact that, indeed, he eventually accepted the offer.
This therefore necessitates not reading too much into the proposed conspicuous evidence of absence, insofar as the reader is not able to successfully tease out any such evidential assumptions in the text, now that it is also clear the text’s complex structural embedment of interlocking subplots and one or two plot drifts do not always lend themselves to easy exegesis. In a sense Lisa’s text requires a more focused, close clinical reading in order to capture some of its latent nuances.
ALICE’S IMMEDIATE WORLD COLLAPSING
On the whole, I should say Alice’s deteriorating condition probably negatively impacted her distinguished professorship, her public intellectualship, her writing and research and publication efforts, her prized intellection or mentation, and her lectureship relationship with her students—than some of her other major health-related preoccupations, a situation that brought about a meeting between her and Mr. Wellman. The latter advised her to consider exiting Harvard at a convenient time of her choosing (p. 251-252). She accepted her departmental head’s advice in good faith.
Alice’s deteriorating condition also reflected poorly on student evaluation of her teaching ability, for the first time in her twenty-five-year career as a renowned professor of psychology and research scientist. She came to terms with the negative outcome of her evaluations. She accepted this one too in good faith.
Finally, she mustered the courage and informed her faculty colleagues of her condition (p. 254-255), having felt the sting of no longer being a Harvard-based research scientist, professor, teaching and advising students. She imagined what her world would be outside Harvard. That is, she weighed her forlornness when she was finally out of the life of Harvard. Those were sad moments for her. Lisa may have captured one of these sad moments in Alice’s life when she wrote:
“In all the expansive grandeur that was Harvard, there wasn’t room for a cognitive psychology professor with a broken cognitive psyche.”
Again, Lisa makes the following observation prior to the preceding one (p. 139):
“She felt like a fraud, posing as a Harvard professor without a neurodegenerative disease, working every day as if everything were just fine and would continue that way.”
SOME CRITICAL PERSPECTIVES
It is not clear whether any of the preceding sentiments played any part in Alice’s consuming preoccupation with suicidal ideation, which Lisa describes in part as “She wanted to kill herself. Impulsive thoughts of suicide came at her with speed and brawn, outmaneuvering and muscling out all other ideas, trapping her in a dark and desperate corner for days” (p. 116).
Did Alice ever read Albert Camus’s “The Myth of Sisyphus” wherein she replaced Camus’s “revolt” with “suicide,” her ultimate riposte to her seemingly absurd life, that is to say her life in the company of the haunting specter of Alzheimer’s, a progressive, degenerative disease? Could she have fallen victim to existential nihilism and anticipatory grief on account of her terminal illness?
Lisa does not exactly say although Alice had been nursing suicidal thoughts from time to time, even going to great lengths to keep from her close family members a possible self-addressed suicidal letter. She had secreted away this letter in a folder she strangely called “Butterfly,” arguably a pretentious irony of the name of an animal that used to bring her cheerful childhood memories. This soliloquy reads in part (p. 369-370; emphasis added):
“You wrote this letter to yourself when you were of sound mind…You have Alzheimer’s disease. You have lost too much of yourself, too much of what you love, and you are not living the life you want to live. ‘There is no good outcome to this disease’…You can no longer trust your own judgment, but you can trust mine, your former self, you before Alzheimer’s took too much of you away.
“‘This last part of your life,’ the part you’ve carefully chosen, ‘is tragic,’ but you did not live a tragic life…
“Now, go to the bedroom. Go to the black table next to the bed…Open the drawer to that table. In the back of the drawer is a bottle of pills. The bottle has a white label on it that says FOR ALICE in black letters. ‘There are a lot of pills in that bottle. Swallow all of them with a glass of water. Make sure you swallow all of them. Then, get in the bed and go to sleep.’
“…‘And do not tell anyone what you’re doing.’ Please trust me.”
Even Lisa characterizes this note as “surreal” (p. 371), and yet this letter probably has more questions than answers. Why did Alice keep this letter from everyone, in the first place? Why must she not divulge the secret contents of this letter to anyone? How many pills were there in the bottle? Why must she swallow all the pills? What kind of pills were they?
Were they sleeping pills—antipsychotic, antidepressant, or mixture of these and others? When exactly did she write the letter? What actually prompted her to write the letter? Why did she go for it at a time her condition had deteriorated to the extent that recall and reading comprehension remained impossible feats for her, when she also knew her husband probably would not be around and even if he did, not within eyeshot as she went looking for the pills?
These are tough questions. I will therefore not attempt to deal with them exhaustively. On the other hand Lisa notes that, after Alice had read and reread the letter and contemplated what the contents might mean, she “took a deep breath, exhaled, and went upstairs” (p. 371). What were the deep breath and exhalation for? Did she always take “a deep breath” and “exhaled” before going upstairs? What pill-related fate(s) lay ahead of her upstairs? Or could it have been that the letter was merely a mnemonic instrument? If so, why the blanket secrecy surrounding the letter?
But then again assume, for the sake of argument, that Alice’s letter was a suicide note. If that were indeed the case, then John’s timely presence upstairs may have unwittingly or inadvertently propelled him to put Camus’s revolt in action, a revolt against the neurological authoritarianism of Alzheimer’s disease and her absurd life, thereby turning a potentially scandalous headline of suicide into a pro-life existence where her vanishing resilience took another shot at life.
In this case John qualifies as a redeeming complement of his wife, even if the suicide theory is a remote possibility or incorrect. In fact if my close reading of Lisa’s text is correct and if it is anything to go by, then I will hazard a guess that Alice may have even entertained euthanasia—though I dare also admit the implicit question of voluntary euthanasia is almost impossible to establish with any convincing degree of forensic and intratextual exactitude. The intricate overlaps of Alice’s forgetfulness or absent-mindedness, confabulations and outright lies, as well as the choice economy of Lisa’s sentential constructions, the stilted formality, the existential pathos and the sometimes illusive or uncertain language of her hungry pen—make for a complicating critique of her text. Here is Lisa (p. 169-170; emphasis added):
“And when the burden of her disease exceeded the pleasure of that ice cream, ‘she wanted to die.’ But would she quite literally have the presence of mind to recognize it when those curves crossed? She worried that the future her (sic) would be incapable of remembering and ‘executing this kind of plan. Asking John or any of her children to assist her with this’ in any way was not an option. She’s never put any of them in that position.
“She needed “a plan” that committed the future her (sic) to ‘a suicide’ she arranged for now…”
Was the “plan” the “Butterfly” letter? I don’t know! What I do know is that, at one point she conceived of a plan that would bring a radical existential finality or closure to her gloomy future, her life of suffering, a view she thought made incontrovertible sense to her—“a shotgun or a single bullet” (p. 200). Still, the suicide theory suffers from lack of easily verifiable internal evidence in the text. Lisa reminds her readers that Alice’s “words made her feel ‘sad’ and ‘proud,’ ‘powerful’ and ‘relieved’” (p. 371).
Yet after she had taken “a glass of water” and “a handful of pills” from her husband and “swallowed each one” (p. 372) according to Lisa, “she lay down on the bed…and closed her eyes, feeling ‘sad’ and ‘proud,’ ‘powerful’ and ‘relieved’ as she waited” (p. 372-373; emphasis added). The import of these observations is that the surreal contents of the said letter and the pills she took from her husband and swallowed appeared to have ended up producing the same outcomes: sadness, pride, power, and relief! This sounds like her experiencing a far-reaching placebo effect—of sorts.
And “as she waited? For what? Possibly she waited in anticipation of the potential benefits of the pills to take effect before heading out with her husband for the Harvard Commencement (p. 373-378), for Alice displayed sporadic squirts of recall presence and admirable calmness during the period. At the Commencement when she even spoke briefly, she did so intelligently and a bit confidently.
FOOD FOR THOUGHT
Alzheimer’s disease stole Alice’s conscious self, her once-brilliant and productive mind, her past and present and future, her identity, her short-term memory, her family, and her world—until she was dispossessed of everything.
What future and possessions did she have to include in a living will, recalling Dr. Davis’ advice to her to begin making preparations for a living will and power of attorney (p. 190)?Was there any need for a living will when she virtually had lost everything to a deformed gene she had no control over? Who was she to bequeath her dispossessed self to anyway? Alzheimer’s? Dementia?
How about her willingness to donate her brain for research (p. 190), or having already unwittingly bequeathed the deformed gene to the next generation—Anna specifically (p. 148, 156; Lydia refused to go for genetic screening to confirm whether she had the deformed gene; Tom did not have the deformed gene, p. 156)?
Was Alzheimer’s disease the only natural gift Alice had? In other words was she even aware the only possession she had was a terminal disease, an insidious thief of nature? And yet, all she seemed to have in her dispossessed possessions were none other than the dreadful Alzheimer’s disease, supposedly, and anger, an absence of mind, a subdued and clipped mind. What about her anger?
Her anger stemmed from her father’s direct involvement in an alcohol-impaired-driving accident that led to the untimely deaths of her mother and sister, Anne. His father was the driver of the car.
Alice’s father was an inveterate alcoholic, the same father she blamed for her terminal disease. Perhaps her misplaced anger, diagnostic misattribution, and tendentious reading of her father’s antemortem intentions and behavior found common ground in the idiosyncrasies of her medical condition and thought processes.
Thus Alice’s tenuous suspicion that she may have inherited the disease from her late alcoholic father was, at best, an unsustainable fantasy, or better yet, merely a self-aggrandizing speculation (p. 114-115). Moreover, she never adduced any concrete scientific evidence to that effect, unlike her children to whom she and John tried to explain her condition on the basis of the hard evidence of science and factual certainty. Could she then have been consumed by the mind-eating parasites of cognitive bias?
She also had very little on her extended family to help her draw any convincing, usefully informed conclusions regarding the exact genetic etiology of her condition, thus making her father the sole source of her misery highly unlikely—untenable. Her father could therefore not continue to incur the poisonous stings of posthumous comeuppance for a “genetic crime” he may have known absolutely nothing about.
Anna’s twins, on the contrary, would grow up knowing their mother did her best for them, with the understanding that she deployed the immense resources, intrinsic power, and generosity of science against the deformed gene, a timely intervention guaranteeing that their mother would not pass on her deformed gene to them (p. 156). Alice was not that fortunate, a gracious and intelligent woman who could not bring herself to invest absolute faith in the experimental drugs she was put on.
The conceptual verdict of multifactorial inherence is that the complex interplay of genetics and environment authoritatively define the etiology of complex disease states, Alzheimer’s being one of such. Perhaps an unsettling irony is that the same proud, convincing science that had failed to redeem Alice from the daunting shackles of her terminal predicament managed to save Anna’s children, Alice’s beloved grandchildren, from a potential raging-scourge of Alzheimer’s—and its intimidating, bone-crushing symptomatology
In Alice’s special case the trending variables of poor sleep hygiene, depression, insidious anger, and stress in her life may have cumulatively contributed to her condition one way or other. Thus if she had learnt to forgive her father, perhaps Alzheimer’s would have done the same. Like human beings, diseases and environment are capable of forgiving too if humans learn to do the right things—paying due attention to eating well, staying away from stressors, exercising the body and the mind, good sleeping hygiene, avoiding substance abuse, staying away from excessive indulgence in tobacco, etc., while gender/sex and race/ethnicity are held constant, are a few “right things” humans can learn to do for themselves. Of course, there is no hard internal evidence that Alice did any of those things apart from her responsible drinking of wine, an activity she indulged in only occasionally.
Granted, Alice realized the ever-flowing kindness of the human heart in her interactions with support groups, caregivers, healthcare professionals, friends, strangers, and her family. Presenting her well-received speech at the Dementia Care Conference (courtesy of the Alzheimer’s Association), she said in part (p. 346-347):
“I encourage you to empower us, not limit us. If someone has a spinal cord injury, if someone has lost a limb or has a functional disability from a stroke, families and professionals work hard to rehabilitate that person to find ways to cope and manage despite these loses. Work with us. Help us develop tools to function around our losses in memory, language, and cognition. Encourage involvement in support groups. We can help each other, both people with dementia and their caregivers…“
Alice was still Alice because she remained somewhat resilient in the face of her debilitating condition. She was still Alice because her grandchildren, Anna’s children, did not inherit the deformed gene, so too was Tom…Alice was still Alice because she won the battle over Lydia and still remained integral to Lydia’s ‘The Memory of Water.’ Alice was still Alice because she (and John) generously shared the hopeful insights of ‘From Molecules to the Mind’ with her intratextual audience. Alice was still Alice because she knew her mother and sister died on January 19th (p. 100), the same month and day she received her Alzheimer’s diagnosis (p. 107).
And Alice was still Alice because she gave the world her monumental memory, the incomparable text “Still Alice.” In “Still Alice” the gate-crashing intrusiveness of suicidal ideation did not live long enough to tell its side of the story. It fizzled out just as it appeared on the outskirts of strong minds—as it was consistently eclipsed by its own intrinsic failure to own up to the terms of concrete crystallization in the opening and closing chapters of Alice’s productive existence, a hopeful existence clearly defined by an active, well-structured story dramatization of immanent resilience, love, community, and intelligent choices geared toward improving the human condition.
Then again, so did suicidal ideation betray its absurdist pretensions when it woefully failed to gain on the rhetorical momentum of “Still Alice.” Even so the enduring character of Alice made her a willing moirologist not for her defiant self but for the frigid wickedness of nature, highly emblematic of the erratic intrusions of a cast of unwelcoming characters and uninvited thoughts occasioned in her public and private lives by her fair-weather Alzheimer’s disease and the revealing chaos of scientific uncertainty.
No wonder suicidal ideation failed in its efforts to define Alzheimer’s disease in exclusive stigmatic terms. In the end, the indomitable human spirit always wins out in the challenging panorama of the human condition. This is the story that Lisa tried to present to the world with unrelenting verve, doing so against acute cognizance of the complex multifactorial underpinnings of the human condition and human survival. Perhaps like neuroscientist Antonio Damasio’s groundbreaking “Looking for Spinoza,” Lisa’s “Still Alice” brings a taboo subject alive in the open!
SPECIAL NOTE FOR READERS
Readers may also want to see the movie (although the script for the movie is not nearly as factually accurate as what the book depicts). Author of this article has seen the movie but did not enjoy it as the book.
Camus, A. (1942). The myth of Sisyphus. New York, NY: Spark Publishing.
Damasio, A. (2003). Looking for Spinoza: joy, sorrow, and the feeling brain. Boston, MA: Houghton Mifflin Harcourt.
Genova, L. (2007). Still Alice (Large Print Edition). Waterville, Maine: Water Publishing Waterville.