TW: death, mental health, chronic illness, disability
There are so few readily available scripts to talk about death in contemporary Western society. I don’t know if this would be easier if my story was easier, if it was cleaner or more morally unambiguous. «I love you, you’ll be forever missed, goodbye». And it’s not that any of those things is untrue, or not felt, or said for the sake of appearances. It is only that it feels so little. It feels like it does not encapsulate the complexity of my feelings, right now (– and, I wonder, of how many others?).
My grandmother’s presence in my life was a complex affair: as I was little, I would see her often, since we lived close by. As I grew a bit older, geography changed our respective lives. Geography and, I would later understand, mental illness, chronic illness, and the gendered labour of caring for family, caring for a husband, caring and carrying the caring. (My own certainty of much of this chronology is slim; I was way too young to remember it, I have too few memories, taken away by so many other things, and the stories that I hear around me don’t always line up, match up, or at least not to the degree that my academic-centered, archival and chronologically driven mind can find acceptable, peaceful, restful.)
From than point on, the customary became an every-now-and-then occurrence, and one that brough much joy and celebration; the 3+ hour trip by car from the outskirts of a village in the hills of Algarve to the bustling periphery of Lisbon, (unre)marked by racialized bodies living in subhuman conditions while holding on to their humanity, my childhood self passing through but never with, taught to be careful but not fearful.
This is where things get sticky. This is where I think you, grandmother, got stuck. Were made to get stuck. Needed to stick to. I don’t know which – if any; maybe all.
Years later, as that distance narrowed from 300Km to two streets away, I was hurting but unable to comprehend that pain, unable to process it. I believe you tried to help as you could, as you knew. I also believe that you were, even back then, even some 25 years ago, no longer really ‘you’. That the ‘you’ that represented you in your fullness was something that I never got to truly meet, not as a self-conscious, self-aware, self-critical person. And the ‘me’ that I was then – more so the ‘me’ that I am now – was also (maybe) no longer at your grasp. But I do believe that you saw people needing care, and that you tried to care, to provide that care – even if, in reality, you were the one (also) needing care, your mind no longer truly there.
(There is a memory of you I have which I cannot fully place, but which has always stuck with me. I remember you saying you’d like me to be a doctor. But not any doctor. A gynecologist. To my childhood mind, what little grasp I had of the word only made it into ‘just’ a specialty, same as thoracic surgeon. Is it funny that I still ended up connected to sexology and sexualities’ studies – though not a gynecologist, as you’d have wanted? I don’t know – but I am pretty sure that I can more fully appreciate the subtlety involved in a woman who has the 4th grade and worked for a pharmaceutical factory, who was raised during the height of the Portuguese fascist dictatorship, to tell me I should go into gynecology precisely because I did not go into gynecology.)
Then, because poverty is a thing, and because single-parent families are a thing, and because parental recklessness is a thing, that two streets’ distance turned into 2 meters – the distance from one bedroom door to another, all under one roof; my teenaged self trying to cope with watching adults physically and mentally withered and withering, frailty and the looming presence of utter dependence and disability an everyday presence. True – it did not last long, that period. But it lasted long enough. Forever enough. What I did not see, or could not comprehend, or did not understand, was that adults – like children, like teenagers – are also always changing. That every tick of the clock was a tick away from ‘you’ being ‘you’. That what was stuck, was more and more stuck.
As I went on, as life went on, things got rougher between us. I felt I was soaring – secondary school, university, a masters’, a PhD. And at every step, in every moment, you were so joyous to see me – and in every step, in every moment, I became more and more avoidant, more and more averse to the hugs and kisses that I had sought years prior, that I still seek so often in those who are close to me, me the cuddle-monster that I am. It took me so long to see that I – that we – had fallen into a vicious circle: the more you pulled, the more I pushed away.
Why did I push away? The answer I have now – will it change in the future? – is that I did not feel seen. At every turn, you would use your soft and joyous voice to intone «Here’s my little grandchild!», and I felt unseen, unremarked, I felt forced into that place and time of pain (or maybe of the place and time before the pain?), when what I wanted was to grow, to change, to be seen as more than that child. I felt disrespected – I have no other word for it. More and more so, that you kept violating my personal and physical boundaries and would only acknowledge that I wanted you to give me some space if I – sometimes literally – shut the door to my own bedroom and held it close with the weight of my body.
I don’t think I remember ever having had a conversation with you – not something that I would call a conversation. I, who can hold conversations for hours. I felt that you were proud of me – of my accomplishments – but that you did not see me. That was the source of so much bitterness and frustration in me – so much of which I cannot yet let go of, even now that I have had to say goodbye, even now that you can no longer do anything that makes me feel unseen.
But were you, ‘you’? What parts of you were there still, amidst neurodegeneration, amidst the pills, amidst the aftermath of psychiatric illnesses galore, past and (then-)present? That was the part I did not see. Or refused to see – I do not know. I felt that you were trying to make me be stuck, but I am not sure that I ever really understood that you were stuck. That you had been stuck for a very long time – and that maybe, clinging to me (literally, and metaphorically) was a way to escape the present and stick to the past. Did you ever feel stuck? Would I have been able to have this conversation with you, years ago, before the brunt of the symptoms took hold? Or did I just write you off as incapable of that, arrogantly, because I felt unseen and thus incomprehensible to you?
Were you trying to make me stuck, or were you clinging to what little joys you could have, you could remember, you could muster, and seek solace in the childish happiness that I once gave you, even after the child was gone? I do not know.
I grew up watching you suffer for others, and watching others suffer for you – always the labour of care, always the amplified burdens of a society that does not care about caring. Your suffering is ended now and – being all cold and utilitarian – that means that fewer people will have to carry the burden of care because of that. Do not think that there is any rejoicing in this goodbye – just, maybe, a deep sigh from a breath long-held.
None of that, though, can answer me who you were; none of that can truly say if I am now, with eyes clouded by tears, more clearly able to see all the stickiness around you, me, your past, my past, our past.
And so this is my script, this is my convoluted goodbye – not one of simple joyous memories shared and celebrated in unison, but a lack of those memories. Not one of beautiful marking moments and conversations, or intimacy shared, but of distance and resentment. Not one of finality and connection, but one of frustration – first and foremost at myself for what I did not see when I was so busy feeling unseen, then at the mundane banality of neurons and neurotransmitters and physicality as a whole.
In death, you bequeath me with so many questions that I was never able to hold in my hands while you lived. Pained though they may be, I will always cherish questions, and the doors they open for me to become unstuck from who I am today.
So, thank you. And goodbye, grandmother.
5/10/2023