The isolation wall

A nurse once asked me about the effects of one of the chemotherapy drugs in my regimen. “One of my patients said it feels as if a wall comes up around you,” she said, which I thought was a pretty good description of the unpleasant, oppressive sensation that accompanies the drug in question. There is also another kind of wall that that comes up around you, which is one that separates you from everyone you know who does not have to remain perpetually, acutely, aware of the statistical likelihood that they will be alive and whole in five years’ time. I don’t blame the healthy for not understanding what it’s like to be ill-I was on the other side not too long ago and blissfully unaware myself-but I find that many of my interactions with Muggles are fraught and only serve to reinforce this wall of isolation.

As an example, I haven’t been getting the best news about my health recently-it seems as if every meeting with the oncologist requires me to re-calibrate my hopes and expectations, and to imagine scenarios that have crossed over from the realm of Probably Won’t Happen to Maybe Just Possibly Might Happen. I have found out, however, that although receiving bad news is tough, communicating it to people you know is infinitely worse, because they can’t help but try and cheer you up by saying “I know you’ll get through this” and “It’ll be fine, I’m sure”. You know? You’re sure? Can I have you as my oncologist instead of the one I have now, since you seem to know something she doesn’t? Although those proffering these reassurances probably think they’re saying the right thing, the truth is that at best this kind of response makes me feel as if the other person doesn’t really care, and at worst it makes me feel as if I’m stuck in a conversation straight out of the mad tea party in Alice in Wonderland, in which the more reasons I give for not being fine the more the other person insists I will be fine.

My theory is that this happens because people easily confuse ‘to reassure’ with ‘to empathise’, not realizing that with a disease like cancer reassurance is often the opposite of empathy. As I’ve talked about before, to have this illness often means to reconcile yourself to the fact that anything can happen. This process is long and slow and sometimes bitter, and it only makes it worse when someone who otherwise hasn’t a clue about the whole thing reacts to my concerns by making a pronouncement about my future prospects with cheery certainty, when the absence of certainty, of reassurance, is the very thing that I’m trying to get used to. I may as well stab myself with a massive knife and hand it to them to twist it in. So in the interest of all people who find themselves in a similar situation (and from what I know this sort of thing is not uncommon) I’ve prepared a handy flowchart on what to do when someone you know presents you with worries about their health:

The other thing that should be avoided, though this is less common, is to respond to said worries by changing the topic of conversation, in the hope that this will distract people from their fears. You might think you’re being clever by doing this, but it comes across as unfeeling and dismissive, and in any case it doesn’t work. Instead, listening patiently without offering any judgment or advice, and topping it off with an “I’m so sorry to hear that”, would probably do the trick.

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I have never been very impressed with Facebook, and have rarely got any meaningful interactions out of it, which is why I’d deleted my account a long time ago. I don’t know why I thought things would be different the second time round, but my illness forced me to give up whatever social life I had and I felt that an online one was better than none at all, so I returned with renewed enthusiasm, which needless to say didn’t last long. Being on Facebook is like being locked in a little blue prison and being forced to watch a grindingly boring, never-ending film about the grindingly ordinary bits of the lives of the people you know. I don’t find people quite so dull in person, so it must be that most of us reserve our intelligence, energy and wit for real life. Or perhaps the deadening effect of looking at other people’s profile pictures with them standing with their hands on their hips, in what Caitlin Moran calls “the internationally recognised pose of “I am a bit of a vapid pain in the arse now”” means that we’ve all evolved a Pavlovian response to the blue notification bar that makes us behave a bit dimly whenever we’re on the site.

In addition to all this, the fact that the daily lives of my young, active peer group could not be more different from mine at the moment makes it more isolating, not less, to spend time on a social networking website, which is what led me to abandon it again. If I want to be reminded that my suffering, while noteworthy to me, is of no particular concern to the world and that everyone else is getting along just fine regardless of whether I am, I would rather read Auden:

In Breughel’s Icarus, for instance: how everything turns away
Quite leisurely from the disaster; the ploughman may
Have heard the splash, the forsaken cry,
But for him it was not an important failure; the sun shone
As it had to on the white legs disappearing into the green
Water, and the expensive delicate ship that must have seen
Something amazing, a boy falling out of the sky,
Had somewhere to get to and sailed calmly on.