CO-VID: THE CONSIDERATE VIRUS?

Am I naive to call it that? Probably. But I would rather be naively hopeful during a global pandemic than be destroyed by fear of a thing I exist with daily, hourly. And that is extinction by infection. Talk about unromantic language. Some English consonants are not the prettiest sounding.

There are cars whizzing past, still. And the sound of conversation, laughter and once, a child crying next door. My mother is chopping vegetables for soup tonight. And my father is doing his floor exercises. On Friday, schools closed their gates around Britain, following suit behind most of Europe. The supermarkets are buckling under the strain but community morale and practical solutions are being invented by a world used to being superhuman, charged by motivation and productivity and consumption. Oh dear. More of those consonants.

Let’s steer towards the sea. And Venice’s clear waters.

On Monday, I had my six monthly dose of Rituximab, which depletes my B cells, and takes me on a briefly intense chemotherapy journey. Then it passes. But the meeting place of a new virus, further immunosuppressive drug therapy and continuing chronic illness is... interesting. This slow paced, enforced self-isolation life? This is my jam. This is where I dwell as a matter of course. This place is never quite comfortable in a world of motion and forward full speed ahead-ness, but it is home, for me. Am I better prepared than you for the quiet life? Perhaps. Well, except for the extinction by infection part.

The post and delivery men come and go. Retired NHS staff are returning with sleeves rolled up in solidarity. The birds were riotous earlier this week, but sounded a little subdued today. Humans, eh? they roll their eyes at each other. Just can’t tell what they’ll be up to next.

Are you coping alright? Is the quieter pace of life easy for you to adapt to? Or are you among the population who are busy doing at home work-outs, creating community cohesion networks, magazines, reading groups? I feel tired just thinking of the ways in which people are stopping, slowing down and finding ways to ‘do things’ in a time of government mandated no-doing. Perhaps this is because I have had a winter of respiratory infections already, and I have almost no energy to worry about a virus that seems to be making most people very considerate. But I gathered just enough to upload a vlog to my ancient channel, in case you want a little glimpse into my life! My skills are desperate, but there's always a chance I'll get better :)

GROUNDHOG DAY (MONTH, YEAR)

It’s 2020! Which matches neatly for anyone who likes their numbers mirrored or believes in numerical significance. I think I belong to that crowd ... like when I glance at my watch and see the time is 17:17 or 23:23. It happens so often I take it in my stride as one of those natural oddities. So far so good, or so meaningful.

But does anyone really experience a seismic change for the prosperous? And it usually is prosperity (or a pleasant change in the fate of one’s circumstance) that we are hoping the clock will provide on the twelfth beat of the midnight hour. Luck be a lady tonight. Lady, be lucky tonight. Be mine, lucky lady. Be mine, luck. And somehow sandwiched between one year end and one year start, we hold faith on an inbreath and release, eventually, into the real, once again.

What was real for you? For me, it was the influenza virus. How do you know you have the flu, asked the infectious diseases registrar in the emergency department. How did you know you had the flu, asked the immunology consultant on the ward, the next day. I can taste it, I said. It has a certain flavour, an aroma, a texture known to the memory of my cells. (They were listening to me, thinking, ‘Mm-hmm. Sure, kid, gal, woman. Whatever you say.’) Of course, I knew I had the flu because my nephew brought it on a plane from Singapore. I’m going to call you the NOD, I told him. The Nephew of Doom. Dang it Shai, thanks a lot, said the nephew of doom, taking it on his small chin. He made up for it by reading me several pages of Eva Ibbotson’s ‘Journey to the River Sea’. He read most of the book by himself, which pleased his aunt enormously. He knows about Eva. That she had The Lupus. He's not happy she died of it. But he understands she matters to me. I haven't introduced him to Flannery O'Connor yet... I'm not completely merciless.

One month has caterpillared across the seemingly endless bouts of coughing, fever, vomiting (oh, you know about the 'flu? I shall desist from further details)... my immunology consultant wants to see me again on Monday. Yesterday I had a heart monitor fitted to check on its speedy action (we in the biz call it tachycardia) and a few days ago, I had a ghastly paralysing attack of fibromyalgia. 

Dang it, 2020! To quote my precious nephew of delight. See, Raf? That works too. NOD. Nephew of Delight. Also, Nieces of Delight. All four of my delights are just that. 'Don't eat me!' they say. 'Cook me!' they say. 'Are you listening to me?' they demand. 'Copy me!' they command. Alright, 2020, if that's all you have in store for me, along with this writing m'larky, I'll take it.      

CAMPYLOBACTER AND I

Who are you, bug of my gut? Why do you wish me to be your home? You have turned my body into a battlefield and I look nothing like a warrior anymore. I am the slain defeated soldier, wishing only for the earth to open and swallow her whole. 

Campylobacter. Another name acquired to add to the list. Did you know it is a common enough bacteria mostly found in poultry? Chicken specifically - factory farmed, sad toxic little chicken... but also the plastic packaging which contains the chicken, and any fresh produce which comes into contact with either. So really, just about anything can host the little devils. Many people in the UK population have had campylobacter chomp away at them for a day or a few days or a week. But the normal body expels the unwanted intruder ... 

Perhaps we should all be vegans but we have developed such a deep and passionate art for cooking throughout the ages and embedded in every culture and nationality, that to erase meat and fish for the sake of the occasional gut attack, appeals to a select few.  We know we contain bacteria within us - just as we ourselves once were bacteria... 

Then there’s your tricky antibody deficient, immuno suppressed lupus patient. 

I had mysterious bouts of sepsis several times in 2017 until this bacteria was finally discovered in my bloodstream - where it should not have been. This is supposed to be a strictly gut bug. We pelted it with IV antibiotics and thought ourselves in the clear. But all through last year I have been trailing behind a sense of weariness, an unwellness hard to define. Was my dosage of Rituximab too low? Too spaced out? Did I need a new drug added in? More steroid? 

I travelled to the East, and seemed on the surface to have managed miraculously well... but every evening and by nightfall I was close to tears with whatever it was that was battling away inside of me. As soon as I returned home from Singapore I went into an exhausted depression under my duvet, and thence into the grip of fierce abdominal pain. Was it my kidneys finally declaring nephritis? I even wondered if I’d had a mini heart attack, so intense was the painful grip.

The psyche of a lupus patient is a horrible fascination. For months now I have felt despair and entrapment at the thought of this being IT. I have always somehow freed myself from the idea that the future is bleak because I will always be ill... but this time around I seem to have less will, less reserves... 

Today is Valentine’s Day and my present is that the medical team have agreed to stop the three streams of antibiotics that were eradicating me with their toxicity. It will take time for my system to clear itself of these drugs ... but the PICC line is still in place so it is hard to believe such a time will come. It will come. Will it?

I could have waited to write an article when light and hope had replaced the nauseating struggle, but this is real too. This in the middle of the thing, this neverending ghastliness that is the nature of this life. Waiting for the energy of hope to pulse within.