VIEW FROM BED

A week ago was an IVIg day. For a year, protocol has required me to have a covid test on the Thursday before the Sunday infusion, but rolling out across most lands today are ‘the end of covid restrictions’. These are words that do not inspire feelings of delight and freedom in the immuno suppressed person. For us, once again, the personal negotiations, with each situation, begin. 

And yet… something has changed, I think. Some deep understanding of fatigue, of the way an invisible source can derail your forward movement, has entered human consciousness. It hasn’t affected man’s desire for war, oil and nuclear arms. But between the two, I think a dialogue has begun. Or, at least, space has been created for dialogue. That’s progress. 

IVIg this month was sandwiched between two Rituximab doses. In the interim, I walk my bundle of cuddly fur and attempt to be fully in the present moment. Aware of wisteria and magnolia at their plumpest. Aware of sunshine and friendly dog related conversations. 

Two pairs of not so tiny hands have arrived from Malaysia and Papa has company shouting and screaming and jumping all over him. Games are being invented fast and furiously and bath time is once again a special English delight…

At the hospital, in between joys of dogs and nieces, I managed to catch up with my friend Daisy, who had a little cry when we wrapped our arms and masked cheeks around each other, and then proceeded to coolly sketch this masterpiece of Zadie Smith. Next commission: Ocean Vuong.

View from the bed, the faux blue chair… cloudy with a chance of sunshine. (How about your view?)

NEW NORMAL, OLD NORMAL

My cousin Barbara asks me if I have been writing lots of poetry. It struck her the other night that there was poetry in this, this time of strangeness, of discovering one's ability to adapt, perhaps - the beauty inherent in that. And indeed, Carol Ann Duffy has just initiated a project titled 'Write Where We Are Now', gathering the thoughts and feelings of her fellow poets on our global viral tidal wave. We surprise ourselves with adaptation, and it thrills us to discover - still here, still here. No matter what. Tsunami, earthquake, the plague, coronavirus. The Great Depression, Wall Street Crash, demonetisation. The end of circuses, the beginning of Tiger King. The end of letter writing, the beginning of emoticons. Lose limbs, become an Olympic athlete. Hospital a dangerous place? Self inject.

What gets lost in the adaptation? The transition. The nuances within those transitions. My anxiety before the sub cut training, my sleepless nights. My terrible sense of the cold once I had penetrated my flesh, in two different sites, slowly, each ml a painful new reality. 'You'll get used to it.' 'Some people love it.' 'You won't even feel it.' Later, someday. You'll be like the others. Who smile and laugh and brush this off. It's nothing. Nothing. Nothing.

The extremely vulnerable must continue to isolate. It is for their own protection. Meanwhile we rush to open our vital economies. Our schools. Life must be returned to normal. Meanwhile there is a rush on Hydroxychloroquine. India closes her borders to exporting the raw materials. Poor lupus patients. Meanwhile it's possible that doesn't matter because being on immunosuppressive therapies may explain why auto-immune patients aren't dying en masse. You're fine, lupus patients. Your cytokine storms aren't as wild and intemperate as ours. As you were. But all the same, stay home afterwards. After our storms subside. Our bodies are the frontlines. We will protect you. We may also infect you. Just stay quiet. With that needle in your flesh. It's for your own good. The front door is your safest bet. Behind that front door... well, never mind that.

That sense of cold I mentioned? It is the place of loneliness, of abandonment. Of being protected for one's own good under strictly controlled guidelines. Of the new normal being the old normal, only with an edge. An edgier edge. But it must be contained, or else our little cup of sunshine will be consumed with the single thought that threatens to destroy us on any ordinary day. The lupus patient was never meant to survive.

And yet she does, with a paintbrush in her hands. Where poetry fails me, I paint my reality. Back and forth. Wax on, wax off. Until I become something akin to the Buddhist novice, who, in elevating a simple monotonous task with consciousness, finds nirvana.