Still My-Self? Or The Loss of the Self?
By Rukmini Sen
“I am not suffering. I am struggling, struggling to be a part of things, to stay connected to who I once was. So live in the moment I tell myself. It’s really all I can do. Live in the moment….I have, uh, good days and I have bad days. On my good days, I can, you know, almost pass for a normal person. But on my bad days, I feel like I can’t find myself. I’ve always been so defined by my intellect, my language, my articulation and now sometimes I can see the words hanging in front of me and I can’t reach them and I don’t know who I am and I don’t know what I’m going to lose next.”- Dr. Alice Howland, Still Alice, 2015 movie release.
As I witness (mostly from a distance) my father struggling with his memory or the loss of it, I think does he also, like Alice, wonder whether he is still ‘himself’? Or has the eating away of the memory been so strong and consistent that he does not even remember what being himself was? I know for a fact that I definitely feel he is no more the father that I grew up with; he is sometimes still the person that I learnt a lot from. But I still have not had the courage to ask him like Alice’s daughter does in the film, “What does it actually feel like?” I feel fraught between whether he would, like Alice, say “Thanks for asking”, or whether he would feel disrespected and more vulnerable with this question? I have often wondered that when multiple doctors asked him, “What is wrong with you?”, his answer in the last two years (among other things) has definitely been ‘bhule jaoa’. Does that translate to forgetting, becoming forgetful or not remembering? Is there a compulsion to remember and/or a need to forget? As much as I probably understand that dementia is a condition of the brain, I cannot but think that there is an unconsciously conscious effort to forget – realizing the futility of remembering – mostly the present. So the present seems to slide away into oblivion while the distant past seems to appear as images or may be even real people and events. People cannot appear without some event attached to the person; like in the film Alice was constantly seeing her sister. Does the affinity with childhood re-surface in the state of forgetfulness? As much as there is a search for/grappling with, the right word (even something as familiar as the word ‘cricket’ for my father—a sport he grew up passionately enjoying); there is also a passing off, for my father, like Alice, with general queries to people he talks over phone around work, weather, or health. Face to face conversations are somewhat different, especially if there are more people as part of the interaction. But the phone communications are trickier – there seems to be a constant effort not to say/ask much – a lurking fear of the mistake being caught.
The fading of memory is connected with the slowing down of mobility. How does my father who felt the need to compulsorily get out of the house (after his retirement) reconcile to the fact that he probably can go out of the house now only under extraordinary circumstances? For nearly a year now, when asked over the phone how his day was, he has responded by saying that he did not go anywhere. The desire to be mobile seems so strong and the inability to be mobile incomparably unacceptable. Today, does he know that he cannot get out even if he wants to and has therefore perhaps blocked off/forgotten his previous (always mobile) self? Or has he resolved, within the same mind which for most of us appears to be un-working, that this is what old age is all about and ageism necessarily brings certain (difficult) conditions of body and mind.
Is my father suffering from a mental illness which is defined as “a substantial disorder of thinking, mood, perception, orientation or memory that grossly impairs judgment, behaviour, capacity to recognise reality or ability to meet the ordinary demands of life”, according to the Rights of Persons with Disabilities Bill, 2014 or from an intellectual disability which is defined as “a condition characterised by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behaviour, which covers a range of everyday social and practical skills” as per the same Bill? Or is he struggling with dementia and Parkinsonism with symptoms of bradykinesia (i.e. slowed movement)? Or is it merely a condition of old age? But when does age become old? How does my mother, who is the primary caregiver of my father, make sense of any of these terms? Yet when she says that your father might need counselling—has she understood the need for it or does she think of it as a better alternative to neurological medicines which she fears might vegetate him faster? And how does she or how do we, her two daughters, or even our father, explain to the wide world of kinship, what really has happened to our father? In the novel Still Alice, Lisa Genova says it perfectly, “She wished she had cancer instead. She’d trade Alzheimer’s for cancer in a heartbeat. She felt ashamed for wishing this, and it was certainly a pointless bargaining, but she permitted herself the fantasy anyway. With cancer, she’d have something to “fight”. There was surgery, radiation, and chemotherapy. There was the chance that she could “win”. Her family and the community at Harvard would rally behind her battle and consider it noble. And even if it defeated her in the end, she’d be able to look them knowingly in the eye and say good-bye before she left.” The concreteness of cancer and the abstractness of dementia make it difficult to even discuss the condition of forgetting. My father maybe losing his language, his words that he so eloquently spoke and wrote; but do we, his near ones and caregivers, even have a language in which to explain what really his illness is? Or disease? Or disability? Or condition? Will naming it make us commit a kind of violence—the violence of fixing/fixed identities or will un-naming it make it invisible?
How does one ensure care to my father in the metropolis of Kolkata? While Alice, a linguistics professor in Columbia University, did not receive suitably sensitive responses from her family in New York, how do I expect my father to receive sensible responses to his condition from his kinship network that is unfamiliar with the particularities of dementia? What kind of institutional support do I get in the city of Kolkata which has an institution called Alzheimer’s Society and Related Disorders since 1992 as well as the Calcutta Metropolitan Institute of Gerontology since 1980s? Little to none! Specialized physiotherapy to address slowness in mobility is available but we are failing to find efficient home based services for memory therapy/exercises. It should have been relatively easier to find institutional services for someone with higher degrees of mental illness or companionship for the lonely aged in the city of Kolkata where the growing elderly population is estimated to be 11.76%, much higher than the other metropolises in India. Are we ready to accept professional service providers like Deep Probeen Pariseba, which claims on the home page of the website, ‘they deserve more than old age facility, they deserve to live in their home’? A professionalized ‘stranger-dependant’ care seems to be the way to ensure what the elderly deserve. This happens since kinship support close to/taking care of the elderly reduces. Moving out/way from home (place of birth) to the world (place(s) of livelihood) is the order within the global flow of labour and capital. But it remains troubling that even these services cater primarily to the really ill, the really immobile. There seem to be limited services to check greater and faster memory loss in the initial stages of memory loss. The inefficiency of these services seem to indirectly insist that kinship members take part in this process of recovery of memory or remembering, which completely de-recognizes the present social and economic condition of younger people staying away from parents’ home as well as city. Without attaching moral judgements on ‘staying with’ and ‘going away’ from the elderly, it is necessary for the state to imagine affordable and efficient services for the (forgotten/forgetting) elderly and not leave it only to the market to determine what is companionship to the lonely elderly. How difficult and impractical would it be to expect members of the kin group to visit and give company to our father? Would it be easier to accept professional companionship? So does the consistent forgetting continue without sufficient professional assistance? Will our father nearly stop conversing one day because he may have forgotten what to say?
I am certain that I would not want Alzheimer’s or Parkinson’s disease to be part of the list of disabilities in the disability legislation in India. But at the same time I am unambiguous about the fact that there needs to be specialized care that people struggling in these conditions require. Being at the margins of illness itself, these diseases/conditions need to be discussed much more. I am certain that we are at least trying to understand what my father has lost, but it is clear to me that we will not be able to know enough of what really this loss is—how deep it is. The shift probably is that my parents did not have a ‘medical’ language to name my grandmother’s condition for the last five years of her life. My sister and I have some vocabulary, although only to lose ourselves in a maze of probable medicalization of an inevitable human condition. It is, however, undeniable that just as there are associations of parents with disabled children, there probably needs to be associations of (adult) children with elderly/disabled parents to ensure that this support and care giving does not become a lonely journey. The inter-connection between disability and old age is a foregone conclusion since we are all only temporarily able-bodied. If that is the reality then the need to visibilize the margins of the margins is crucial. To be able to talk about our forgetful or forgetting parents without prejudice is as important as not hiding our autistic child. I am certain that my father, like Alice, misses himself; is it even possible to make him willingly and not hesitantly accept and be comfortable with his current (lost) self?
Rukmini Sen, Associate Professor, School of Liberal Studies, Ambedkar University, Delhi teaches courses on Law and Society, Relationships and Affinities, Gender and Society. She is actively involved with various citizen’s rights groups in Kolkata and Delhi. One of her recent publications is: ‘Remembering the Pratyahik (Daily): ‘De’-familiarizing Familial Social History through Memoirs’ in Prasanta Ray and Nandini Ghosh, ed. 2015, Pratyaha: Everyday Lifeworlds: Dilemmas, Contestations and Negotiations, Primus Publications, Delhi pp 238-258.
For more stories, read Café Dissensus Everyday, the blog of Café Dissensus Magazine.