Leavetaking: The constant fear of losing a loved one becomes tedious

When someone you love receives a terminal diagnosis, you gain a new awareness of yourself, and not necessarily a positive one.

There are the moments when some meddlesome flash of insight reveals an awful side of you that you’d really rather not have observed, or instants in the midst of your awkward, shambling grief when you surprise yourself with your ability to get things done and to make clear decisions. Mostly, though, it’s like everyday life, but more painful. You live always in the anticipation of loss – the major loss of a person you love and the incremental losses as, one by one, parts of their personality change or fall away.

I need to learn. Every day, I chastise myself for not understanding better, not anticipating what will be needed several steps down the line, not dealing with my feelings around this situation well enough, or quickly enough. I know that you can only make judgments based on solid information, and that is always what is lacking with terminal cancer, but feelings are not always responsive to logic.

Mental photographs

I sit beside my mother and watch her intently. I’m taking mental photographs, as though my furious attempts to shackle the image of her face inside my mind might keep it there.

I look in fear for signs of decline. This creates a sort of panic that doesn’t go away. Since panic must by its nature be temporary – a very physical response you have to something awful having happened, or the knowledge that it imminently will – the panic settles into a sort of tedium. And yes, tedium is the right word, because the sharp grind of constant fear becomes dull. It doesn’t feel natural to hold that tension inside your body for a sustained period of months and months. It festers in there, tightening your limbs and shoulders and arranging your face into a disinterested and glum expression.

The philosopher and psychologist William James had an interesting theory about emotion: that it is physiological first. We generally think of emotions as a mental reaction to something that happens, which triggers a bodily response such as shaking or crying. James thought that it went the other way around. First you tremble, or laugh, or break out in a sweat, and then you interpret what is happening to your body as a particular emotion. I think about James's theory often as I cope with my mother's illness. It is, of course, her illness, and her feelings and thoughts, although she shares them with me and I do what I can to make her feel heard and cared-for. For me, sensations and impressions come, shocking and unbidden – stiffness, pain, and other random responses – as though my body absorbs the feelings that it can't process. Only after do I identify them as grief.

In the midst of all the chaos inside your body and mind, you sit with the tedious panic and wait to see what happens.

Prepared for the inevitable

Every time my mother has a decline in health, I think of it as the decline. I am permanently trying to locate a balance in which I can appreciate the present without forgetting to be prepared for the inevitable outcome of all this – that my mother – at barely 58, long before she is ready, will die.

I am slightly embarrassed to admit that I feel sorry for myself quite regularly. Self-pity is generally discussed as something very undesirable, to be avoided at all costs, a lapse in self-discipline that makes everybody else feel awkward.

I’ve come to accept my own self-pity in all this. It has the potential to be dangerous only if you use it as an excuse to stop engaging with the world. A little bit of it might be healthy. At 27, I still feel very much like I need my mother. There are things I have yet to do that I will need help with, and that I want her to be a part of. But there’s been a shift; now I am (in an odd way) my mother’s mother. She looks to me for comfort and reassurance. A little bit of self-pity is my way of mothering myself and dispelling the panic.