I want to share them and pin them on my wall.
Monday, 20 April 2020
A beautiful truth
My dear friend, Barbara @tellthee, sent me these pages. I think they are the most beautiful truth I've ever read. It speaks to me a truth about death, about being changed by grief.
I want to share them and pin them on my wall.
I want to share them and pin them on my wall.
Tuesday, 31 March 2020
Short weird story: Working from home
I've written this short weird genre story from the top of my head. It's fairly unedited. It's based on my experiences of March 2020.
If this was a b-movie the director would be going for Escape from New York meets The Thing meets Twelve Monkeys. It would begin with splicing stock and news clips together to set the scene. Picture it:
An everyday crowded Chinese inner city street, pedestrians going about their lives wearing face masks of varying patterns and colours. A doctor saying “This is a new strain of virus, highly infectious and we have no known therapy for it”. Workers all over the world entering offices and factories. A news reporter saying “The virus, has shut down many provinces in an attempt to halt the spread”. Footage of funerals. A map of the world with red increasing circles as the virus moves. A glitch induced clip of the US President saying “One day it’s like a miracle, it will disappear”. Stock footage of people in China coughing. Images of hospitals at night. A shot of queues at international airports. A doctor saying “we must stop the hospitals from being overwhelmed”. Japanese students in masks posing giving peace signs. Old footage of looting. Older footage of Police in riot gear fighting shirtless students. A doctor saying “the virus is passed by contact. Please limit contact. Please wash your hands”. South Korean officials. A graph going up. Stock footage of stock exchanges collapses superimposed on a graph going down. Grainy footage of Olympic sprinters. Doctors and scientists saying “social distancing”. An image of two people standing between a silhouetted wingspan of a condor. An angled shot of the British Prime Minister saying “I was at a hospital the other night where I think a few there were actually virus patients and I shook hands with everybody, you’ll be pleased to know, and I continue to shake hands.” Then immediately to the British Prime Minister, face bulbous in a webcam, informing us that he has contracted the virus. Cut to Italian army trucks loading up coffins, a Spanish woman inconsolable at a newscaster, numbers running quicker tallies. A montage of people running to food shops and packing their vehicles with toilet paper. An image of the Pope praying in an empty St Peters. Medical scientists in a lab. Newspaper headlines written about whether 40,000 new respirators in the US will be enough. A papier-mâché of the word “Lockdown”. The US President glitching “Now, this is just my hunch, but based on a lot of conversations with a lot of people that do this, because a lot of people will have this and it is very mild... So if, you know, we have thousands or hundreds of thousands of people that get better, just by, you know, sitting around and even going to work, some of them go to work,”. The Chinese police dragging a man from his bed. More coffins. Packed housing in India. Germany. Mexico. Russia. “Paris is in lockdown”. More medics exhausted. More empty streets from around the world, lavishly shot using drones. A British spokesman talking about “herd immunity” a scientist saying 250,000 people would die with that strategy. “Do not go out”. “Stay at home”. “Schools, bars and shops are all closed until further notice”. “One hour of exercise outdoors only” “Do not see friends” “If you are over 70 or have underlying health issues, you must stay in quarantine for at least 12 weeks” “The only religious gathering will be family funerals”. Graphs of rainbow colours showing bell curves. Children’s drawings of rainbows being stuck to windows. Candles in windows. Police with tasers tentatively surrounding a slovenly dressed man and his shopping bag. Stock footage of people enjoying walking in a park. A busy beach of sunbathers. A coffin being floated down a Venetian canal. Black and white footage of escaping prisoners. Joggers. Sexual content. A sped up stock footage of a sports field overgrowing and crumbling. A shot of an Italian mayor in medical gloves and facemask imploring from the screen “Why are you inviting hairdressers into your homes? Who is going to see your hairstyles? Don’t you realise the coffin lid will be closed?” A sped up shot of a conference centre being transformed into a field hospital. Empty shelves in a supermarket. A doctor pleading with people to stay at home. Joggers again. More empty streets save for wildlife. A poster of the United States having the most confirmed cases of the virus in the world. A flickering image of a US citizen proudly holding a gun. The US president saying on a glitch switch, “It’s going to disappear”. The Scottish First Minister: “Work from home if you can.”
All set to J.S. Bach, naturally.
[At this point the film would go black and then in white, crisp font: In a not too distant past and a not far off future. Because this is a b-movie, there is limited budget. It needs to downscale. It would probably have an unreliable narrator to replace expensive things like a script and actors and sets. The narrator would cast the hook in 3 sentences.]
The last day in the office seems a long time ago. It’s going to be countless more before a day like it again. Memories have become coy.
Just another 2 weeks, just another 2 weeks, they keep saying. Not even a month and populations gladly gave up freedoms and thirst for government sanctioned instruction to adhere to. When they can go out and for how long and where. What the rule of law means now. Mobile phones to be charged and in your pocket (for information reception and not tracking purposes at all). How quickly is altered what people thought was civil power. CEOs and inner city jobs have been dropped and shelf stackers hailed. Money is just a computer. Prisoner sentences ending early. Doctors and nurses are pleading for equipment. Yesterday a medical kink shop has donated their outfits to their local hospital. That’s not to say there will be carry-on style nurses with micro uniforms and stockings and doctors with large thermometers. It turns out the medical fetish community take their kink very seriously and it uses medical-grade shit. Life comes at you fast.
[This is a much more of a B minus movie. It needs to narrow its story further. The main character needs to be an “everyman”, someone seeing what’s happening but is unable to do anything much about it. Someone the audience can relate to. An Average Joe office worker, in an average office, doing average things. That’s when we can subject the character to the pain of life]
13 days, but it took only 1 for the fabric of what was my normality to be torn like wet paper. For several weeks it had been work as usual at my desk. Coffee, some action of whatever it is I do for whatever reason, a quick check of the news sites, more coffee, a quick check on my social media, look at the clock. Oh, and remember to wash your hands. Washing hands was almost as important as whatever it is I do at the desk. Wash your hands: 20 seconds, just like you were about to begin open heart surgery and not just pick up a computer mouse.
The Company said everything was in… hand. Follow the government advice. Wash your hands to the tune of Happy Birthday, sung twice.
It took for the sixth case of the virus for the Company to provide hand sanitisers. That and the stories of panic buying of them in supermarkets leading to shortages. They put large pump bottles of them in the staff washrooms. Next to the soap dispensers. Management were so prepared they were giving us a choice at the sink. We could now sing Happy Birthday as a round. None were provided where there was nothing before. It was OK. It just meant more walking along corridors and opening more doors to get to them. But then less time sitting at your desk is the new wellbeing thing Human Resources are promoting this year. Get up, stretch your legs once in a while.
The skin on my hands started to dry out and resemble scales. I bought moisturiser.
It’s not as if you couldn’t see which way the wind was blowing. And the virus was well in the breeze. China had it first and was in lockdown. The perfect setting for a post-modern sci-fi it was the poster boy for an aesthetically pleasing apocalypse. Italy was next. More a Pirelli pin-up for the Old World dealing again with a plague. The old lady does mourning like no other. We didn’t need a seer to tell us our fortune. It had been the talk of the office for three weeks.
The Company was completely ill-equipped, nonetheless. I suppose it’s unsurprising. Companies are challenged about their skills for budget management, but less on putting staff at risk just to touch a photocopier.
The Company resolved to divide responsibility. Each department manager for their own in planning for the oncoming virus. The office worked on as normal. As it has always done. As it will always do. Only with that walk to wash hands every forty-five minutes or so. No problems if you wash your hands.
[So the movie sets the scene and suggests things are under control. But in the best of these stories, the tension is slowly screwed as we introduce complacency]
Numbers of cases were rising out there. You could almost hear each pebble drop into the bowl. The water level rising. Each journey to and from the office began to feel like the odds of keeping our heads above the surface were reducing. People began walking into work. Public transport? Petri dishes on wheels, more like. Talk in the office was now focussing more on learning about the virus, ways of contagion and those with gasps for air from desks given strong suspicion that they might be our murderer.
The Company moved to shut down talk: keep washing your hands. It has weathered the banking crisis of ‘08, a fire or two and even pandemics in its history. We will prevail in the flood. The company is unsinkable. Then, as if to demonstrate calmness incarnate about those news reports - management took a 3 day holiday. Planning for a catastrophic workflow event can wait. Enjoy a bit air. Soak up the Ds.
We didn’t know it, but 4 days later was pre-diluvian day. Not that it was all that normal in the office. Numbers were now counting faster than K.I.T.T.’s digital speedometer.
Government was beginning to suggest working from home was the best advice. Certainly stop close personal contact. Some in the office were now wearing face coverings. They looked like snorkelers. Not me. Whatever we made or sent or recorded (what was it we actually did?) in the office was very much secondary to discussing what management was doing to mitigate any situation arising from the virus spread. Our faith needed their response being agile. Management had been silent as the Davey Jones’ locker so far. Click, click, click of the keyboards. Eyes around the office was out a spaghetti western.
A suggestion was made to management. Categorise. Who can work from home? Who cannot?
Then: Who has declared underlying health issues? Who has vulnerable people to care for? Who has school age children? Who cannot walk to work? Venn diagram these with key services to begin to see where the resource pressure points will be in certain scenarios. We should print off key information, we should spend time making sure we understand who can be relied on for what. We need to start preparing equipment and our customers. We need to know what we can do as work at home.
Yes. A meeting, there will be a company meeting. Something will be written up. Honestly, don’t worry. Any developments will be likely 2 weeks away. Plenty of time. Plenty of hand sanitiser. If you want reassurance, fill this in. It’ll be crucial information when we have time for planning contingencies:
Do you have the internet at home?
Do you have device to access the internet at home?
Can you access the office email website at home?
Can you access the office website at home?
Can you access other websites at home?
[Next must be the hubris denouement]
One day later. An email notification flashed like a shark attack. We didn’t know it had already nicked an artery. A mortal wound.
Someone in the office has tested positive for the virus. The rot was setting in.
We sat waiting for an announcement. Someone phoned management. After a while, they walked in.
“There is nothing to add. What do you expect from us? There is no way we could have anticipated this. We will have to arrange a meeting for later in the week. Carry on as normal, but with more breaks for washing of hands.”
Wasn’t this always an inevitable situation to consider? Were you not reading the mainstream news? Picking up the pulse on social media? Were you not supposed to be preparing in the past weeks so you could just initiate an “Action C” or D for today?
Management looked on vacantly. Shuffled. They looked into the middle distance. They looked for land and found only more of the same. Life comes at you fast.
What happens if you break the glass and you just get bloodied knuckles?
[If this was a b-movie it would have to pay homage to with some wink towards the audience to an actual response by a very important person to a very bad thing]
This was management’s George W Bush reading a children’s book on 11 September moment. With no plan, no skillset for this and nothing else to hand other than equipment screen wipes, the management team contemplatively cleaned the photocopier. For about until the end of days.
As the morning sun dawned on the situation, whatever we did, well, it hadn’t been getting done. There was no plan, no instructions and no action. The sinking feeling turned mutinous.
Management came out their induced paralysis just before the end of the day, announcing responsibility would now be devolved further. Individuals could now decide to return to the office tomorrow or not. Those judgements to be based on our own circumstances and preparations made for home working. The management was no longer in a position to make those decisions for us.
I packed a bag of things on my desk, leaving a chocolate bar behind by mistake.
I’ve not been back in the office since.
[Act 3]
What happened didn’t seem too significant. A tiny little decision in the grand scheme. Working from home. The risk would be resolved by the Company, the virus would sweep past by nature. However, working from home became normalised throughout the world. And those least prepared found themselves on a deserted island.
At the time, the Company were taken by surprise when most of the office decided to work from home. They offered incentives to come back. Keep the snorkels on. The rooms and corridors would be cleaned morning and night. The company was determined to see it through. None of it made a difference with events wailing out a siren from the top of the Empire State Building.
Those few that did go back into the depths were not hailed as heroes, or have been since been martyred. The Company continued to broadcast proudly business was carrying on as usual. They assured customers of going above and beyond for them despite fewer staff, not because of them keeping things turning.
Knowing office colleagues were risking infection to keep the company doing what it did (seriously, it did something) made me guilty. I could go in if I wanted to help. I just believed it was unwise to. I didn’t want to be mistaken for waving when it was drowning.
Working from home was good, too. There were initial snagging issues. Just having the internet turned out not to be enough of a tick for home working. That tech audit could have applied to a basic smart phone. Just because you have a device to access the internet doesn’t lead on to it being suitable. Not everyone had the software at home. Programmes were incompatible. Licences had not been bought for others. Office software that coped in-house was found obsolete in-home. The company’s servers were being tested to their capacity and often failed, crackled and cracked.
But I adjusted effectively to my new environment.
I had something I could do. Something offline. It wasn’t a priority task or a new collaborative project that management seemed to now feel this was the ideal opportunity for. It was simple, repetitive work. I didn’t need to be hooked up. I found the government isolation rules suited the task. And me, for that matter. I don’t have a webcam so I couldn’t fish-eye my face and unkempt hair into meetings. Couldn’t join in on the “after-work socials”. No interruptions. No person asking if I have an opinion. No phones ringing. For the first time I was in, effectively, a private office and it was a joy.
I don’t think of myself in “isolation” or “lockdown. I prefer to think of it as perfect seclusion. Solitude of the Mariana Hollow. I can look out the window at the fishes swimming by.
In the end, even the Company had to adjust their message. The building would be sealed watertight. The taps turned off. Of course the Company and management still get in touch. They’ve started a strange “service” of getting the office junior to snail mail printouts of the Company twitter account. Keeps her off the streets, I suppose. I also get a weird email everyday like a postcard and telling me everyone is well and what the weather is like out a window of some board member or another. I guess they quickly forgot what they do too. I’ve set up a rule in my email to send them straight to “trash”.
[Then the final b-movie classic twist, that makes no real logical sense if you think about it]
Wash your Hands. Duck and Cover. Don’t Panic and Carry On. Stay at Home and Save Lives. Restrict Movements.
It’s tough. You make mistakes. Things become so everyday you begin to forget by virtue of habit. Did I wash my hands? Did I duck and cover? Is this fresh water? Is this what I do?
I miss physical contact. Warm and tacky. I miss perfume. And I miss tasting skin. These are the things which tend to stay in your dreams.
At first people walked and jogged around their own neighbourhoods. It was a strange phenomenon: all of a sudden people were out exercising for that one sanctioned hour. They must use that time for serious movement. It was as if the world was not trying to kill us, but offer up a glorious chance to get fit. Some could be explained away by the closed gyms. Old people were told they were the most vulnerable to the virus but suddenly out in box fresh New Balance. All sorts of people on the street, walking, running and cycling. Go Out, It’s Good For You. I can’t recall, but I’m not sure that was the slogan.
When the streets became too dangerous, the zombie movie characters started to shoal out to exercise in the closed down retail parks on the edge of the residential estates. The streets have gotten a lot quieter for one reason or another.
When people heard of the decisions being made and for what reasons, the enthusiasm for the medics dispersed as droplets into the vastness so that it is indictable. The counting has stopped. Once numbers just mean numbers, I guess there’s no point. Call the emergency lines and listen to recorded laughter. Everything melts away in the end.
I keep up at my work at home. Seven hours. One hour for lunch. Regular. I’ve kept all the emails to remind me to keep working. A lot have stopped coming some time ago. In fact I’m not sure what are recent or not. It’s hard to keep remembering what the date is. It’s all good, though, I don’t need emails to do my work. In fact I don’t need much of the old office at all. Not the old desk, seeing weeds outside, the office clock I used to glance at every 3 minutes.
It’s hard to tell the days, let alone the time. The radio loops the emergency message, when you can tune into it. Always a gameshow on the screen. A couple trying to win an exotic holiday. Must have been filmed before the virus changed things. I know what question the host will ask next. I barely watch that for 3 hours a day now. Between weighing myself, and trying to remember… I’ve got not much time for any more of what was used to be a waste of time.
All those deaths – I should have bought a burial plot years ago. I work, I worry I’m getting ill, (what are the symptoms?) I weight myself, I eat when food is delivered, I to go bed when the old night drops in. Then I lay there: did I go around twice today for my sanctioned exercise? I look out of the glass. More fish.
The city, rough as barnacles. Although it is still possible to catch glimpses that could be corn puff coral, if you know where to go.
Rain comes in great bubbles. I look at the bubbles for the ideas inside them. The reason we are told to stay at home, of course, is because if there is no food coming that day because the supply line has failed again and we starve to death, or get ill, then we will not be dying out there, gasping for air. We will be ready-made entombed in our odd shaped pyramids.
Well there’s all this and waiting for when my owners next sprinkle food flakes to float down to my ruinous castle, hoping most of the flakes don’t settle to close the figure in the deep sea diving suit propped against the clear curve. I don’t like going right to the pane’s edge. It’s awful close to being out there, out in the open air.
It’s just how working from home is.
If this was a b-movie the director would be going for Escape from New York meets The Thing meets Twelve Monkeys. It would begin with splicing stock and news clips together to set the scene. Picture it:
An everyday crowded Chinese inner city street, pedestrians going about their lives wearing face masks of varying patterns and colours. A doctor saying “This is a new strain of virus, highly infectious and we have no known therapy for it”. Workers all over the world entering offices and factories. A news reporter saying “The virus, has shut down many provinces in an attempt to halt the spread”. Footage of funerals. A map of the world with red increasing circles as the virus moves. A glitch induced clip of the US President saying “One day it’s like a miracle, it will disappear”. Stock footage of people in China coughing. Images of hospitals at night. A shot of queues at international airports. A doctor saying “we must stop the hospitals from being overwhelmed”. Japanese students in masks posing giving peace signs. Old footage of looting. Older footage of Police in riot gear fighting shirtless students. A doctor saying “the virus is passed by contact. Please limit contact. Please wash your hands”. South Korean officials. A graph going up. Stock footage of stock exchanges collapses superimposed on a graph going down. Grainy footage of Olympic sprinters. Doctors and scientists saying “social distancing”. An image of two people standing between a silhouetted wingspan of a condor. An angled shot of the British Prime Minister saying “I was at a hospital the other night where I think a few there were actually virus patients and I shook hands with everybody, you’ll be pleased to know, and I continue to shake hands.” Then immediately to the British Prime Minister, face bulbous in a webcam, informing us that he has contracted the virus. Cut to Italian army trucks loading up coffins, a Spanish woman inconsolable at a newscaster, numbers running quicker tallies. A montage of people running to food shops and packing their vehicles with toilet paper. An image of the Pope praying in an empty St Peters. Medical scientists in a lab. Newspaper headlines written about whether 40,000 new respirators in the US will be enough. A papier-mâché of the word “Lockdown”. The US President glitching “Now, this is just my hunch, but based on a lot of conversations with a lot of people that do this, because a lot of people will have this and it is very mild... So if, you know, we have thousands or hundreds of thousands of people that get better, just by, you know, sitting around and even going to work, some of them go to work,”. The Chinese police dragging a man from his bed. More coffins. Packed housing in India. Germany. Mexico. Russia. “Paris is in lockdown”. More medics exhausted. More empty streets from around the world, lavishly shot using drones. A British spokesman talking about “herd immunity” a scientist saying 250,000 people would die with that strategy. “Do not go out”. “Stay at home”. “Schools, bars and shops are all closed until further notice”. “One hour of exercise outdoors only” “Do not see friends” “If you are over 70 or have underlying health issues, you must stay in quarantine for at least 12 weeks” “The only religious gathering will be family funerals”. Graphs of rainbow colours showing bell curves. Children’s drawings of rainbows being stuck to windows. Candles in windows. Police with tasers tentatively surrounding a slovenly dressed man and his shopping bag. Stock footage of people enjoying walking in a park. A busy beach of sunbathers. A coffin being floated down a Venetian canal. Black and white footage of escaping prisoners. Joggers. Sexual content. A sped up stock footage of a sports field overgrowing and crumbling. A shot of an Italian mayor in medical gloves and facemask imploring from the screen “Why are you inviting hairdressers into your homes? Who is going to see your hairstyles? Don’t you realise the coffin lid will be closed?” A sped up shot of a conference centre being transformed into a field hospital. Empty shelves in a supermarket. A doctor pleading with people to stay at home. Joggers again. More empty streets save for wildlife. A poster of the United States having the most confirmed cases of the virus in the world. A flickering image of a US citizen proudly holding a gun. The US president saying on a glitch switch, “It’s going to disappear”. The Scottish First Minister: “Work from home if you can.”
All set to J.S. Bach, naturally.
[At this point the film would go black and then in white, crisp font: In a not too distant past and a not far off future. Because this is a b-movie, there is limited budget. It needs to downscale. It would probably have an unreliable narrator to replace expensive things like a script and actors and sets. The narrator would cast the hook in 3 sentences.]
The last day in the office seems a long time ago. It’s going to be countless more before a day like it again. Memories have become coy.
Just another 2 weeks, just another 2 weeks, they keep saying. Not even a month and populations gladly gave up freedoms and thirst for government sanctioned instruction to adhere to. When they can go out and for how long and where. What the rule of law means now. Mobile phones to be charged and in your pocket (for information reception and not tracking purposes at all). How quickly is altered what people thought was civil power. CEOs and inner city jobs have been dropped and shelf stackers hailed. Money is just a computer. Prisoner sentences ending early. Doctors and nurses are pleading for equipment. Yesterday a medical kink shop has donated their outfits to their local hospital. That’s not to say there will be carry-on style nurses with micro uniforms and stockings and doctors with large thermometers. It turns out the medical fetish community take their kink very seriously and it uses medical-grade shit. Life comes at you fast.
[This is a much more of a B minus movie. It needs to narrow its story further. The main character needs to be an “everyman”, someone seeing what’s happening but is unable to do anything much about it. Someone the audience can relate to. An Average Joe office worker, in an average office, doing average things. That’s when we can subject the character to the pain of life]
13 days, but it took only 1 for the fabric of what was my normality to be torn like wet paper. For several weeks it had been work as usual at my desk. Coffee, some action of whatever it is I do for whatever reason, a quick check of the news sites, more coffee, a quick check on my social media, look at the clock. Oh, and remember to wash your hands. Washing hands was almost as important as whatever it is I do at the desk. Wash your hands: 20 seconds, just like you were about to begin open heart surgery and not just pick up a computer mouse.
The Company said everything was in… hand. Follow the government advice. Wash your hands to the tune of Happy Birthday, sung twice.
It took for the sixth case of the virus for the Company to provide hand sanitisers. That and the stories of panic buying of them in supermarkets leading to shortages. They put large pump bottles of them in the staff washrooms. Next to the soap dispensers. Management were so prepared they were giving us a choice at the sink. We could now sing Happy Birthday as a round. None were provided where there was nothing before. It was OK. It just meant more walking along corridors and opening more doors to get to them. But then less time sitting at your desk is the new wellbeing thing Human Resources are promoting this year. Get up, stretch your legs once in a while.
The skin on my hands started to dry out and resemble scales. I bought moisturiser.
It’s not as if you couldn’t see which way the wind was blowing. And the virus was well in the breeze. China had it first and was in lockdown. The perfect setting for a post-modern sci-fi it was the poster boy for an aesthetically pleasing apocalypse. Italy was next. More a Pirelli pin-up for the Old World dealing again with a plague. The old lady does mourning like no other. We didn’t need a seer to tell us our fortune. It had been the talk of the office for three weeks.
The Company was completely ill-equipped, nonetheless. I suppose it’s unsurprising. Companies are challenged about their skills for budget management, but less on putting staff at risk just to touch a photocopier.
The Company resolved to divide responsibility. Each department manager for their own in planning for the oncoming virus. The office worked on as normal. As it has always done. As it will always do. Only with that walk to wash hands every forty-five minutes or so. No problems if you wash your hands.
[So the movie sets the scene and suggests things are under control. But in the best of these stories, the tension is slowly screwed as we introduce complacency]
Numbers of cases were rising out there. You could almost hear each pebble drop into the bowl. The water level rising. Each journey to and from the office began to feel like the odds of keeping our heads above the surface were reducing. People began walking into work. Public transport? Petri dishes on wheels, more like. Talk in the office was now focussing more on learning about the virus, ways of contagion and those with gasps for air from desks given strong suspicion that they might be our murderer.
The Company moved to shut down talk: keep washing your hands. It has weathered the banking crisis of ‘08, a fire or two and even pandemics in its history. We will prevail in the flood. The company is unsinkable. Then, as if to demonstrate calmness incarnate about those news reports - management took a 3 day holiday. Planning for a catastrophic workflow event can wait. Enjoy a bit air. Soak up the Ds.
We didn’t know it, but 4 days later was pre-diluvian day. Not that it was all that normal in the office. Numbers were now counting faster than K.I.T.T.’s digital speedometer.
Government was beginning to suggest working from home was the best advice. Certainly stop close personal contact. Some in the office were now wearing face coverings. They looked like snorkelers. Not me. Whatever we made or sent or recorded (what was it we actually did?) in the office was very much secondary to discussing what management was doing to mitigate any situation arising from the virus spread. Our faith needed their response being agile. Management had been silent as the Davey Jones’ locker so far. Click, click, click of the keyboards. Eyes around the office was out a spaghetti western.
A suggestion was made to management. Categorise. Who can work from home? Who cannot?
Then: Who has declared underlying health issues? Who has vulnerable people to care for? Who has school age children? Who cannot walk to work? Venn diagram these with key services to begin to see where the resource pressure points will be in certain scenarios. We should print off key information, we should spend time making sure we understand who can be relied on for what. We need to start preparing equipment and our customers. We need to know what we can do as work at home.
Yes. A meeting, there will be a company meeting. Something will be written up. Honestly, don’t worry. Any developments will be likely 2 weeks away. Plenty of time. Plenty of hand sanitiser. If you want reassurance, fill this in. It’ll be crucial information when we have time for planning contingencies:
Do you have the internet at home?
Do you have device to access the internet at home?
Can you access the office email website at home?
Can you access the office website at home?
Can you access other websites at home?
[Next must be the hubris denouement]
One day later. An email notification flashed like a shark attack. We didn’t know it had already nicked an artery. A mortal wound.
Someone in the office has tested positive for the virus. The rot was setting in.
We sat waiting for an announcement. Someone phoned management. After a while, they walked in.
“There is nothing to add. What do you expect from us? There is no way we could have anticipated this. We will have to arrange a meeting for later in the week. Carry on as normal, but with more breaks for washing of hands.”
Wasn’t this always an inevitable situation to consider? Were you not reading the mainstream news? Picking up the pulse on social media? Were you not supposed to be preparing in the past weeks so you could just initiate an “Action C” or D for today?
Management looked on vacantly. Shuffled. They looked into the middle distance. They looked for land and found only more of the same. Life comes at you fast.
What happens if you break the glass and you just get bloodied knuckles?
[If this was a b-movie it would have to pay homage to with some wink towards the audience to an actual response by a very important person to a very bad thing]
This was management’s George W Bush reading a children’s book on 11 September moment. With no plan, no skillset for this and nothing else to hand other than equipment screen wipes, the management team contemplatively cleaned the photocopier. For about until the end of days.
As the morning sun dawned on the situation, whatever we did, well, it hadn’t been getting done. There was no plan, no instructions and no action. The sinking feeling turned mutinous.
Management came out their induced paralysis just before the end of the day, announcing responsibility would now be devolved further. Individuals could now decide to return to the office tomorrow or not. Those judgements to be based on our own circumstances and preparations made for home working. The management was no longer in a position to make those decisions for us.
I packed a bag of things on my desk, leaving a chocolate bar behind by mistake.
I’ve not been back in the office since.
[Act 3]
What happened didn’t seem too significant. A tiny little decision in the grand scheme. Working from home. The risk would be resolved by the Company, the virus would sweep past by nature. However, working from home became normalised throughout the world. And those least prepared found themselves on a deserted island.
At the time, the Company were taken by surprise when most of the office decided to work from home. They offered incentives to come back. Keep the snorkels on. The rooms and corridors would be cleaned morning and night. The company was determined to see it through. None of it made a difference with events wailing out a siren from the top of the Empire State Building.
Those few that did go back into the depths were not hailed as heroes, or have been since been martyred. The Company continued to broadcast proudly business was carrying on as usual. They assured customers of going above and beyond for them despite fewer staff, not because of them keeping things turning.
Knowing office colleagues were risking infection to keep the company doing what it did (seriously, it did something) made me guilty. I could go in if I wanted to help. I just believed it was unwise to. I didn’t want to be mistaken for waving when it was drowning.
Working from home was good, too. There were initial snagging issues. Just having the internet turned out not to be enough of a tick for home working. That tech audit could have applied to a basic smart phone. Just because you have a device to access the internet doesn’t lead on to it being suitable. Not everyone had the software at home. Programmes were incompatible. Licences had not been bought for others. Office software that coped in-house was found obsolete in-home. The company’s servers were being tested to their capacity and often failed, crackled and cracked.
But I adjusted effectively to my new environment.
I had something I could do. Something offline. It wasn’t a priority task or a new collaborative project that management seemed to now feel this was the ideal opportunity for. It was simple, repetitive work. I didn’t need to be hooked up. I found the government isolation rules suited the task. And me, for that matter. I don’t have a webcam so I couldn’t fish-eye my face and unkempt hair into meetings. Couldn’t join in on the “after-work socials”. No interruptions. No person asking if I have an opinion. No phones ringing. For the first time I was in, effectively, a private office and it was a joy.
I don’t think of myself in “isolation” or “lockdown. I prefer to think of it as perfect seclusion. Solitude of the Mariana Hollow. I can look out the window at the fishes swimming by.
In the end, even the Company had to adjust their message. The building would be sealed watertight. The taps turned off. Of course the Company and management still get in touch. They’ve started a strange “service” of getting the office junior to snail mail printouts of the Company twitter account. Keeps her off the streets, I suppose. I also get a weird email everyday like a postcard and telling me everyone is well and what the weather is like out a window of some board member or another. I guess they quickly forgot what they do too. I’ve set up a rule in my email to send them straight to “trash”.
[Then the final b-movie classic twist, that makes no real logical sense if you think about it]
Wash your Hands. Duck and Cover. Don’t Panic and Carry On. Stay at Home and Save Lives. Restrict Movements.
It’s tough. You make mistakes. Things become so everyday you begin to forget by virtue of habit. Did I wash my hands? Did I duck and cover? Is this fresh water? Is this what I do?
I miss physical contact. Warm and tacky. I miss perfume. And I miss tasting skin. These are the things which tend to stay in your dreams.
At first people walked and jogged around their own neighbourhoods. It was a strange phenomenon: all of a sudden people were out exercising for that one sanctioned hour. They must use that time for serious movement. It was as if the world was not trying to kill us, but offer up a glorious chance to get fit. Some could be explained away by the closed gyms. Old people were told they were the most vulnerable to the virus but suddenly out in box fresh New Balance. All sorts of people on the street, walking, running and cycling. Go Out, It’s Good For You. I can’t recall, but I’m not sure that was the slogan.
When the streets became too dangerous, the zombie movie characters started to shoal out to exercise in the closed down retail parks on the edge of the residential estates. The streets have gotten a lot quieter for one reason or another.
When people heard of the decisions being made and for what reasons, the enthusiasm for the medics dispersed as droplets into the vastness so that it is indictable. The counting has stopped. Once numbers just mean numbers, I guess there’s no point. Call the emergency lines and listen to recorded laughter. Everything melts away in the end.
I keep up at my work at home. Seven hours. One hour for lunch. Regular. I’ve kept all the emails to remind me to keep working. A lot have stopped coming some time ago. In fact I’m not sure what are recent or not. It’s hard to keep remembering what the date is. It’s all good, though, I don’t need emails to do my work. In fact I don’t need much of the old office at all. Not the old desk, seeing weeds outside, the office clock I used to glance at every 3 minutes.
It’s hard to tell the days, let alone the time. The radio loops the emergency message, when you can tune into it. Always a gameshow on the screen. A couple trying to win an exotic holiday. Must have been filmed before the virus changed things. I know what question the host will ask next. I barely watch that for 3 hours a day now. Between weighing myself, and trying to remember… I’ve got not much time for any more of what was used to be a waste of time.
All those deaths – I should have bought a burial plot years ago. I work, I worry I’m getting ill, (what are the symptoms?) I weight myself, I eat when food is delivered, I to go bed when the old night drops in. Then I lay there: did I go around twice today for my sanctioned exercise? I look out of the glass. More fish.
The city, rough as barnacles. Although it is still possible to catch glimpses that could be corn puff coral, if you know where to go.
Rain comes in great bubbles. I look at the bubbles for the ideas inside them. The reason we are told to stay at home, of course, is because if there is no food coming that day because the supply line has failed again and we starve to death, or get ill, then we will not be dying out there, gasping for air. We will be ready-made entombed in our odd shaped pyramids.
Well there’s all this and waiting for when my owners next sprinkle food flakes to float down to my ruinous castle, hoping most of the flakes don’t settle to close the figure in the deep sea diving suit propped against the clear curve. I don’t like going right to the pane’s edge. It’s awful close to being out there, out in the open air.
It’s just how working from home is.
Wednesday, 15 August 2018
"Pain is inevitable. Suffering is optional" Buddhist proverb
This blog ended up being a bit of internal-monologue-therapy-turned-spillage-into-tangible-world of my personal experience with chronic pain. I’ve no expectation of anyone reading this. I’m not looking for sympathy or a rush of Rocky style celebrations from those who do read on.
“On a scale of one to ten, how much does it hurt?”
It’s hard enough to explain how badly something hurts without also relying on someone else’s scale of reference.
Sometimes I lie prone in bed and wonder what relief would be like to take my lower-body off and hang my legs over the end, as you would stockings on Christmas Eve. Sometimes I only remember I have pain like an imprint left in the sand.
Eh, A seven?
“What kind of physical pain is it? Is it a hot pain?”
Describing pain types is like describing an entirely new colour of paint without the swatch.
Sometimes I contort my face close to tears walking up the stairs to my home because I feel I am failing.
Eh, it is a hot pain. A spongy, hot pain – like a coil element heating up and you can feel the ridges of it zinging with a glowing red – like molten custard running down apple pie.
I’m slowly coming to terms with my lifelong chronic pain.
I have congenital, bilateral hip dysplasia. There. Said. It. I can relax now back in the circle.
I’ve never been so open about it until this year, this now. I’ve been blessed with friends recently who have their own dealings with pain and mobility. I’ve seen how they cope and take ownership and complain, and I’ve found myself inspired in my own small way.
I want to explore my pain more. In order to do so, I want to understand why I’ve never been comfortable talking about it. There is no doubt some of this is an existential guilt. My pain is surely not so bad. Not as bad as others with legitimate pain issues. I mean, we all have a daily pain. We are all constantly and insistently aware of our joints jabbing and rubbing away at us, our bodies failing us at every waking moment of every day. Every step we've ever put together. Always. We all live through an interminable ache.
My mother almost mythologised my condition from my beginning, which already has good enough context for the beginnings of any gothic biography around:
I was born in a hospital for the mentally ill.
It wasn’t during a thunderstorm, where the walls bled rain water through ancient bricks, but it might well have been overcast.
When I was delivered into the world (my mother told me when I was young) the doctors whisked me away, tested me and returned me with the welcome result: “Your boy’s not got bone cancer”. She went on to say they diagnosed “inverted hips”. This, she told me, was a rare condition and one that invoked interest about my skeleton with medical academics and consultants. It was a condition that, mother went on to tell me, was the reason why I walked funny when I was physically tired and why I felt pains in my hips. My mother explained she had to make a decision there and then to either let me live a normal childhood, like any other healthy boy, or be taken in for experimental surgical procedures. She opted to give me a normal childhood.
And that was it… that was my only take on the condition I had. No more information, no less information. Inverted hips.
Most children, I guess, have literary character heroes. Hermione Granger, Sherlock Holmes, Paddington Bear. Mine was – you know the lame boy from the Pied-Piper story? – well, him. Instead of a cautionary story about honouring agreements, the story became a dark morality tale recounted as a bedtime story by my mother of a wise, lame boy not being so swiftly led into following dreams and promises of gold, warm caramel and rainbow delights and into certain (at least in a developmental sense of being children forever) death in the mountain by a stranger, but finding the strength to remain in the grey stone reality to work hard, remain in school and help a village in mourning for a generation lost to frivolous venture. Mother meant well: give me someone to relate to.
Over my strictly youthful years I was often seen by doctors in hospital. My legs were handled and manipulated at various angles and degrees. X-rays were taken. A visiting contingent of Swiss consultants were invited in to look at my boyish limbs. My legs were measured with ink to check on simultaneous growth. All the time, I was a silent partner and my condition was the main character. The doctors would take my mother aside and give their assessments. I was able to gauge them with the various nods and shakes of their heads.
I would leave the examinations and mother would refer to my “snake hips” in a kindly tone. “You were born to run fast!” she would say.
My mother and father (who dropped us at appointments) were keen not to discourage me to partake in activities. School, after-school groups, parents: they didn't inform anyone who could perhaps have given me some leeway. My condition only exited in my house and in medical appointments.
In my school and boy scout group, I was as active as any other child. I ran (fast), I jumped, I clamoured, I swam, I failed to work out how to climb rope, just like everyone did. I did not feel free on many days. There was a soggy rag balled up in my mind. There would be days, I wished I wasn’t being treated the same. I wanted some special dispensation because I felt inferior within myself and wanted an exit. I was doing the same things but there was something wrong with me. No one knew, of course, and I was very isolated with my body.
I went on a class field trip: abseiling. Gravity does most of that. Only we had to climb the rocky hill first. The expert spoke about rock climbing techniques: "Try to put a leg here, and hand there, then miss out the easy purchase - go for the harder one with the other foot! Push yourself!"
I opted for the easier ledge to get me up to the others at the top. I made that decision because at that moment I wanted to be comfortable.
"Cheat! Yer a wee cheater!" called out our supervising teacher, who was our usual German teacher in school but now stood above me, pointing in her fleece and orange abseiling helmet in the middle of the woods.
Well, you were my first teacher crush mainly because you only spoke German in class and I thought you were a continental woman whose natural tongue made German sound just the right side of frightening, but now it turns out you are from central Scotland. Seems we both have our hidden sides, fraulein.
Now that actually hurt. My condition to her was a cheater.
I was harbouring something only I could gauge that limited me in some scientifically recognised but otherwise unrecorded way. I had not the language or understanding to communicate.
Because, of course, “inverted hips” sounds completely fabricated, medically. Like someone saying they have foggy lung or hopscotch eye. “Oh, this? I’ve got high leather levels”. When friends saw me tripping one leg over the other, or limping, or pained, or standing with my feet pointed across each other like they had discovered a lay-line, telling them I had inverted hips generated obvious follow up questions that I had no answer to. I felt a fraud. So I shrugged and said I didn’t know. In the end I stopped saying anything much about it to anyone.
In the early days of the internet, when it was all animated goblets of fire on black screens and lime green text, I would try and look up information on inverted hips. There was nothing. My cause of pain was either so rare only I had it, or it was false.
As a teenager I was living with my pain, pretty much secretively. Mother was taking me to a osteopath to crack my vertebrae once a month as this was all we could afford. I’m sure she’d want to take me more often and for more variety of bone cracking. The dysplasia constricted a lot of my core soft tissue elasticity and mother was worried I was developing a rounded spine. Therefore I was also going to a physiotherapist. The appointments were in a cold room that looked like a janitors office – replete with draughty dark floorboards and a diagram of the human body skinned and pinned to the naked plaster wall – of a school built in the 1930s. It was down here I was getting my hamstrings stretched. Other than my family, no one knew. I was OK with that, because I didn’t want thought like the lame boy missing out on the Pied-Piper’s journey.
“How do you manage your pain with keeping active?”
I put my body through various activities to test my pain threshold and wonder what level is ever too much to take.
Eh, over the counter pain killers, joint supports and strapping. A bath?
I ran on, rugby, badminton… all the time wondering what sort of damage I was causing to my joints. Should I be doing this?
At age 15 the doctors spoke again to my mother regarding doing surgery on me. I was sitting beside her, so I was able to understand more about my, up to then, strangely home-concocted condition. My pelvis and hips simply hadn’t developed as they should have. It could have been a lack of blood supply, a deficiency of nutrients or something else in the womb. Something very slight. Development is a game of fractions. I always think this was unfair, my mother blamed herself.
The doctors wanted to operate. Break my pelvis and both femurs: reset them as they should be. I would be in traction for around 4 months. In order to keep my legs growing evenly, metal shafts were to be nailed to my leg bones and, turning a valve tap, cranked a notch apart every so often. The recovery process would be a year. I imagined a Victorian hospital ward the colour of bandages and me hoisted on wires up in a hospital framed bed and nurses draining me and doctors tinkering with the ratchets bored into my bones, like a scene from Kafka, then black rimmed NHS wheelchairs and lonely days looking out windows onto lawns through hopscotch eyes.
My mother asked me what I wanted to do. I had exam worries and friends and hobbies. I declined the operation.
“What would you like done to help with your pain?”
Someone to take a sledgehammer to my pelvis to crack it open and release the damnable pressure.
Eh, just whatever the experts think is best.
In my 20’s a GP giving me a general check-up was surprised at the rotation of my legs. I pleaded ignorance. I went back to the hospital for more X-rays. Going as an adult, I learned more now about a condition I was increasingly comfortable living with. I finally saw an X-ray of my pelvis and hips. It was beautiful. I wanted to take it home and frame it. Make it a stained-glass window. It was the first time I could look at what was troubling me.
Instead of curved ball and sockets placed by a master watchmaker, my hip joints fit into my pelvis like pins, hammered in like an apprentice blacksmith. Straight up. The knee bones connect to the hip bones connect to the spinal column and straight to my pain receptors, as the song goes. All impact shooting up, no stops between joint and hinge, refreshments served in the rear of the knee cartilage. I saw white mist around the joints – osteoarthritis. This is a given with hip dysplasia.
The doctor offered me surgery: a hip replacement. 3 months recuperation. I had just begun my career and enjoying my early adulthood. I declined. He said I’d be using a walking stick within 10 years.
Then nothing. Nothing changed. I got on with my life for 10 years… pause for Gonzo story telling effect, without the need of a walking stick. In fact I increased a little of the pain killers and improved the quality of my joint supports and simply continued as before.
Until in the past 8 months. The pain was bad.
“Where does it hurt?”
A knee feels blown-up by cartoon TNT and somebody has shot a bolt gun through my lower spinal column and I’m sure there are micro-robots with tiny clamps for hands on my hamstrings. At least my hips are ok – numbness isn’t pain, that’s just medical fact.
Eh, in my hips and knees and across my lower back. My upper thigh, lately. All the time.
It took me a long while to go to the doctor in my 30s. I’d avoided doctors with this complaint and they never got in touch. What’s the point? Was I actually suffering? Maybe I’ve grown out of these inverted hips. Maybe they don’t exist in that dimension anymore. Would I be wasting everyone’s time? When I crawled about a bit one night, high on wine, declaring my lower body wretched and fucked, I would buy a horse and then give it for a walking stick. I reached my nadir and agreed to make the appointment. For one evening, I had simply had enough of it.
I thought of my friends. I wanted to make the appointment and find out more.
After I made the appointment, deeper doubts surfaced. What if I really was in a bad way? And what if I was given a means to take away the pain? Booked in for surgery, injected, sent for tests? What if the doctor agreed that I should get a stick, if I felt it would help? Would this simply be an affectation? Something to let me finally show-off my pain? If I hadn’t considered the implications as deeply as I now faced them.
My emotional attachment to a physical pain I’ve known and been with all my life – one that often reminds me of happy days – is complex. Would having it removed, nerve by nerve, bone by bone – actually living without its signature – remove fundamental parts of me by unpicking neurons? Am I arguing with a redundant caveman masculinity trait? Just take the pills!
Still. Do I need the pain as part of who I am?
My pain has never shaped my options, but it understands what I am. I prefer to suffer trials over unwarranted pleasure as a trait. The pain, I’ve often thought, suits me. We are not friends, but the connection is not toxic either. It became the silent partner in it all at one stage long ago. It has been something that reminds me that this is my life. These are my legs. This is my pain. This is how I feel and no one else does. The pain has also been something to rally against. Rage against, even. When I need it to, it makes me want to put one foot in front of the other again. To make me take one more howling step along.
My relationship with my pain is masochistic. I like this pain most of the time. I enjoy feeling its outer limits.
I understood both too little and too much about my body. I tweeted about my doctor's appointment and x-rays and the support I received was hugely appreciated. It took the trepidation away.
The GP pushed and pulled my limbs as they all do. He sent me for x-rays.
The nurse positioned me once and twice more under the aperture apparatus with her cold hands on my hips. I noted that nowadays radiology staff don’t wear lead aprons. I joked I asked her to x-ray me like one of her French skeletons. They send the x-rays by email.
“You know that pain is subjective”
That’s what I’ve been trying to convey in this blog. These asides are becoming worryingly meta.
I’ve coped OK with it, but recently I’m starting to feel it is getting me down.
The results were returned. The GP was utterly nonplussed as he took the computer mouse to scroll up and down the notes on his monitor with all the body language of a sigh in his wrist. All my years of quiet furrow in getting on with things, of conjuring the lame boy without complaint because of his heroic virtue to stay behind and choose a hard and rewarding life had, for one brief moment, been a firework now suddenly turned smoke held in the chill as it floated off.
The GP relaxed on his black office chair and half-spun to meet me. “There’s nothing I can tell you from the x-rays that you don’t already know. You already know you have congenital, bilateral hip dysplasia. It’s not severe. A bit worse on the left. There’s wear and tear but nothing to worry about. Your extreme inflexibility around the area is causing you to pull on hamstrings and tendons. Keep taking pain killers as you need them and look into getting a few exercises from a physiotherapist to get those soft tissues stretched and that’s all I can say to help you.”
The GP, though, did tell me something I didn’t already know. From “inverted hips” to “growth defect” I now have a legitimate term for the cause of my walk, my pain: hip dysplasia. Something to research. It turned out to be easy to do so. It is not that rarefied in the medical textbooks. My mother telling me I was one of only a handful of people in the world with it was a well-meaning, if baffling lie to tell me. It even has its own fucking institute, probably in quite a reasonable sized building, too.
I am sort of stunned to have lived this long with something I found profoundly symbiotic and I am only now able to begin to fully understand and feel confident about entertaining. It is valid. All that weight I’ve felt pressing down on all those years (and let’s be honest, that can’t be good with hips like mine) actually means something.
I still have reservoirs of joint pain in me, to me – the doctor’s idea of severe or not, means little – and I am in pain. However, now I don’t need to be so cloak and dagger. I can openly take medication, not need to put on joint supports in cubicles and hold onto bannisters if I want to and if someone asks me, I can give an answer I believe in. An answer I know. I can point them in the direction of an entire Institute.
Today I’m trying hard to take the strength I see with my friends. I am taking medication and continuing with supports. I am going to book into physio and for regular massages. I am more positive and more healthily approaching my pains and dealing with them as part of a truly normal way of living: that is openly and without guilt on their limitations and allow honesty into my writing. I want to thank those who know who they are for letting me travel with them - at my own pace - to the mountain’s open mouth again.
Well I don’t know if this feels good, but it does feel different.
All I need after this is a pelvis bone tattoo on my arm. And for more people to understand when I say I have dyscalculia. Which, considering my biographic beginnings in that mental hospital, seems an altogether much more in keeping goth medical term to tell people I have.
“On a scale of one to ten, how much does it hurt?”
It’s hard enough to explain how badly something hurts without also relying on someone else’s scale of reference.
Sometimes I lie prone in bed and wonder what relief would be like to take my lower-body off and hang my legs over the end, as you would stockings on Christmas Eve. Sometimes I only remember I have pain like an imprint left in the sand.
Eh, A seven?
“What kind of physical pain is it? Is it a hot pain?”
Describing pain types is like describing an entirely new colour of paint without the swatch.
Sometimes I contort my face close to tears walking up the stairs to my home because I feel I am failing.
Eh, it is a hot pain. A spongy, hot pain – like a coil element heating up and you can feel the ridges of it zinging with a glowing red – like molten custard running down apple pie.
I’m slowly coming to terms with my lifelong chronic pain.
I have congenital, bilateral hip dysplasia. There. Said. It. I can relax now back in the circle.
I’ve never been so open about it until this year, this now. I’ve been blessed with friends recently who have their own dealings with pain and mobility. I’ve seen how they cope and take ownership and complain, and I’ve found myself inspired in my own small way.
I want to explore my pain more. In order to do so, I want to understand why I’ve never been comfortable talking about it. There is no doubt some of this is an existential guilt. My pain is surely not so bad. Not as bad as others with legitimate pain issues. I mean, we all have a daily pain. We are all constantly and insistently aware of our joints jabbing and rubbing away at us, our bodies failing us at every waking moment of every day. Every step we've ever put together. Always. We all live through an interminable ache.
My mother almost mythologised my condition from my beginning, which already has good enough context for the beginnings of any gothic biography around:
I was born in a hospital for the mentally ill.
It wasn’t during a thunderstorm, where the walls bled rain water through ancient bricks, but it might well have been overcast.
When I was delivered into the world (my mother told me when I was young) the doctors whisked me away, tested me and returned me with the welcome result: “Your boy’s not got bone cancer”. She went on to say they diagnosed “inverted hips”. This, she told me, was a rare condition and one that invoked interest about my skeleton with medical academics and consultants. It was a condition that, mother went on to tell me, was the reason why I walked funny when I was physically tired and why I felt pains in my hips. My mother explained she had to make a decision there and then to either let me live a normal childhood, like any other healthy boy, or be taken in for experimental surgical procedures. She opted to give me a normal childhood.
And that was it… that was my only take on the condition I had. No more information, no less information. Inverted hips.
Most children, I guess, have literary character heroes. Hermione Granger, Sherlock Holmes, Paddington Bear. Mine was – you know the lame boy from the Pied-Piper story? – well, him. Instead of a cautionary story about honouring agreements, the story became a dark morality tale recounted as a bedtime story by my mother of a wise, lame boy not being so swiftly led into following dreams and promises of gold, warm caramel and rainbow delights and into certain (at least in a developmental sense of being children forever) death in the mountain by a stranger, but finding the strength to remain in the grey stone reality to work hard, remain in school and help a village in mourning for a generation lost to frivolous venture. Mother meant well: give me someone to relate to.
Over my strictly youthful years I was often seen by doctors in hospital. My legs were handled and manipulated at various angles and degrees. X-rays were taken. A visiting contingent of Swiss consultants were invited in to look at my boyish limbs. My legs were measured with ink to check on simultaneous growth. All the time, I was a silent partner and my condition was the main character. The doctors would take my mother aside and give their assessments. I was able to gauge them with the various nods and shakes of their heads.
I would leave the examinations and mother would refer to my “snake hips” in a kindly tone. “You were born to run fast!” she would say.
My mother and father (who dropped us at appointments) were keen not to discourage me to partake in activities. School, after-school groups, parents: they didn't inform anyone who could perhaps have given me some leeway. My condition only exited in my house and in medical appointments.
In my school and boy scout group, I was as active as any other child. I ran (fast), I jumped, I clamoured, I swam, I failed to work out how to climb rope, just like everyone did. I did not feel free on many days. There was a soggy rag balled up in my mind. There would be days, I wished I wasn’t being treated the same. I wanted some special dispensation because I felt inferior within myself and wanted an exit. I was doing the same things but there was something wrong with me. No one knew, of course, and I was very isolated with my body.
I went on a class field trip: abseiling. Gravity does most of that. Only we had to climb the rocky hill first. The expert spoke about rock climbing techniques: "Try to put a leg here, and hand there, then miss out the easy purchase - go for the harder one with the other foot! Push yourself!"
I opted for the easier ledge to get me up to the others at the top. I made that decision because at that moment I wanted to be comfortable.
"Cheat! Yer a wee cheater!" called out our supervising teacher, who was our usual German teacher in school but now stood above me, pointing in her fleece and orange abseiling helmet in the middle of the woods.
Well, you were my first teacher crush mainly because you only spoke German in class and I thought you were a continental woman whose natural tongue made German sound just the right side of frightening, but now it turns out you are from central Scotland. Seems we both have our hidden sides, fraulein.
Now that actually hurt. My condition to her was a cheater.
I was harbouring something only I could gauge that limited me in some scientifically recognised but otherwise unrecorded way. I had not the language or understanding to communicate.
Because, of course, “inverted hips” sounds completely fabricated, medically. Like someone saying they have foggy lung or hopscotch eye. “Oh, this? I’ve got high leather levels”. When friends saw me tripping one leg over the other, or limping, or pained, or standing with my feet pointed across each other like they had discovered a lay-line, telling them I had inverted hips generated obvious follow up questions that I had no answer to. I felt a fraud. So I shrugged and said I didn’t know. In the end I stopped saying anything much about it to anyone.
In the early days of the internet, when it was all animated goblets of fire on black screens and lime green text, I would try and look up information on inverted hips. There was nothing. My cause of pain was either so rare only I had it, or it was false.
As a teenager I was living with my pain, pretty much secretively. Mother was taking me to a osteopath to crack my vertebrae once a month as this was all we could afford. I’m sure she’d want to take me more often and for more variety of bone cracking. The dysplasia constricted a lot of my core soft tissue elasticity and mother was worried I was developing a rounded spine. Therefore I was also going to a physiotherapist. The appointments were in a cold room that looked like a janitors office – replete with draughty dark floorboards and a diagram of the human body skinned and pinned to the naked plaster wall – of a school built in the 1930s. It was down here I was getting my hamstrings stretched. Other than my family, no one knew. I was OK with that, because I didn’t want thought like the lame boy missing out on the Pied-Piper’s journey.
“How do you manage your pain with keeping active?”
I put my body through various activities to test my pain threshold and wonder what level is ever too much to take.
Eh, over the counter pain killers, joint supports and strapping. A bath?
I ran on, rugby, badminton… all the time wondering what sort of damage I was causing to my joints. Should I be doing this?
At age 15 the doctors spoke again to my mother regarding doing surgery on me. I was sitting beside her, so I was able to understand more about my, up to then, strangely home-concocted condition. My pelvis and hips simply hadn’t developed as they should have. It could have been a lack of blood supply, a deficiency of nutrients or something else in the womb. Something very slight. Development is a game of fractions. I always think this was unfair, my mother blamed herself.
The doctors wanted to operate. Break my pelvis and both femurs: reset them as they should be. I would be in traction for around 4 months. In order to keep my legs growing evenly, metal shafts were to be nailed to my leg bones and, turning a valve tap, cranked a notch apart every so often. The recovery process would be a year. I imagined a Victorian hospital ward the colour of bandages and me hoisted on wires up in a hospital framed bed and nurses draining me and doctors tinkering with the ratchets bored into my bones, like a scene from Kafka, then black rimmed NHS wheelchairs and lonely days looking out windows onto lawns through hopscotch eyes.
My mother asked me what I wanted to do. I had exam worries and friends and hobbies. I declined the operation.
“What would you like done to help with your pain?”
Someone to take a sledgehammer to my pelvis to crack it open and release the damnable pressure.
Eh, just whatever the experts think is best.
In my 20’s a GP giving me a general check-up was surprised at the rotation of my legs. I pleaded ignorance. I went back to the hospital for more X-rays. Going as an adult, I learned more now about a condition I was increasingly comfortable living with. I finally saw an X-ray of my pelvis and hips. It was beautiful. I wanted to take it home and frame it. Make it a stained-glass window. It was the first time I could look at what was troubling me.
Instead of curved ball and sockets placed by a master watchmaker, my hip joints fit into my pelvis like pins, hammered in like an apprentice blacksmith. Straight up. The knee bones connect to the hip bones connect to the spinal column and straight to my pain receptors, as the song goes. All impact shooting up, no stops between joint and hinge, refreshments served in the rear of the knee cartilage. I saw white mist around the joints – osteoarthritis. This is a given with hip dysplasia.
The doctor offered me surgery: a hip replacement. 3 months recuperation. I had just begun my career and enjoying my early adulthood. I declined. He said I’d be using a walking stick within 10 years.
Then nothing. Nothing changed. I got on with my life for 10 years… pause for Gonzo story telling effect, without the need of a walking stick. In fact I increased a little of the pain killers and improved the quality of my joint supports and simply continued as before.
Until in the past 8 months. The pain was bad.
“Where does it hurt?”
A knee feels blown-up by cartoon TNT and somebody has shot a bolt gun through my lower spinal column and I’m sure there are micro-robots with tiny clamps for hands on my hamstrings. At least my hips are ok – numbness isn’t pain, that’s just medical fact.
Eh, in my hips and knees and across my lower back. My upper thigh, lately. All the time.
It took me a long while to go to the doctor in my 30s. I’d avoided doctors with this complaint and they never got in touch. What’s the point? Was I actually suffering? Maybe I’ve grown out of these inverted hips. Maybe they don’t exist in that dimension anymore. Would I be wasting everyone’s time? When I crawled about a bit one night, high on wine, declaring my lower body wretched and fucked, I would buy a horse and then give it for a walking stick. I reached my nadir and agreed to make the appointment. For one evening, I had simply had enough of it.
I thought of my friends. I wanted to make the appointment and find out more.
After I made the appointment, deeper doubts surfaced. What if I really was in a bad way? And what if I was given a means to take away the pain? Booked in for surgery, injected, sent for tests? What if the doctor agreed that I should get a stick, if I felt it would help? Would this simply be an affectation? Something to let me finally show-off my pain? If I hadn’t considered the implications as deeply as I now faced them.
My emotional attachment to a physical pain I’ve known and been with all my life – one that often reminds me of happy days – is complex. Would having it removed, nerve by nerve, bone by bone – actually living without its signature – remove fundamental parts of me by unpicking neurons? Am I arguing with a redundant caveman masculinity trait? Just take the pills!
Still. Do I need the pain as part of who I am?
My pain has never shaped my options, but it understands what I am. I prefer to suffer trials over unwarranted pleasure as a trait. The pain, I’ve often thought, suits me. We are not friends, but the connection is not toxic either. It became the silent partner in it all at one stage long ago. It has been something that reminds me that this is my life. These are my legs. This is my pain. This is how I feel and no one else does. The pain has also been something to rally against. Rage against, even. When I need it to, it makes me want to put one foot in front of the other again. To make me take one more howling step along.
My relationship with my pain is masochistic. I like this pain most of the time. I enjoy feeling its outer limits.
I understood both too little and too much about my body. I tweeted about my doctor's appointment and x-rays and the support I received was hugely appreciated. It took the trepidation away.
The GP pushed and pulled my limbs as they all do. He sent me for x-rays.
The nurse positioned me once and twice more under the aperture apparatus with her cold hands on my hips. I noted that nowadays radiology staff don’t wear lead aprons. I joked I asked her to x-ray me like one of her French skeletons. They send the x-rays by email.
“You know that pain is subjective”
That’s what I’ve been trying to convey in this blog. These asides are becoming worryingly meta.
I’ve coped OK with it, but recently I’m starting to feel it is getting me down.
The results were returned. The GP was utterly nonplussed as he took the computer mouse to scroll up and down the notes on his monitor with all the body language of a sigh in his wrist. All my years of quiet furrow in getting on with things, of conjuring the lame boy without complaint because of his heroic virtue to stay behind and choose a hard and rewarding life had, for one brief moment, been a firework now suddenly turned smoke held in the chill as it floated off.
The GP relaxed on his black office chair and half-spun to meet me. “There’s nothing I can tell you from the x-rays that you don’t already know. You already know you have congenital, bilateral hip dysplasia. It’s not severe. A bit worse on the left. There’s wear and tear but nothing to worry about. Your extreme inflexibility around the area is causing you to pull on hamstrings and tendons. Keep taking pain killers as you need them and look into getting a few exercises from a physiotherapist to get those soft tissues stretched and that’s all I can say to help you.”
The GP, though, did tell me something I didn’t already know. From “inverted hips” to “growth defect” I now have a legitimate term for the cause of my walk, my pain: hip dysplasia. Something to research. It turned out to be easy to do so. It is not that rarefied in the medical textbooks. My mother telling me I was one of only a handful of people in the world with it was a well-meaning, if baffling lie to tell me. It even has its own fucking institute, probably in quite a reasonable sized building, too.
I am sort of stunned to have lived this long with something I found profoundly symbiotic and I am only now able to begin to fully understand and feel confident about entertaining. It is valid. All that weight I’ve felt pressing down on all those years (and let’s be honest, that can’t be good with hips like mine) actually means something.
I still have reservoirs of joint pain in me, to me – the doctor’s idea of severe or not, means little – and I am in pain. However, now I don’t need to be so cloak and dagger. I can openly take medication, not need to put on joint supports in cubicles and hold onto bannisters if I want to and if someone asks me, I can give an answer I believe in. An answer I know. I can point them in the direction of an entire Institute.
Today I’m trying hard to take the strength I see with my friends. I am taking medication and continuing with supports. I am going to book into physio and for regular massages. I am more positive and more healthily approaching my pains and dealing with them as part of a truly normal way of living: that is openly and without guilt on their limitations and allow honesty into my writing. I want to thank those who know who they are for letting me travel with them - at my own pace - to the mountain’s open mouth again.
Well I don’t know if this feels good, but it does feel different.
All I need after this is a pelvis bone tattoo on my arm. And for more people to understand when I say I have dyscalculia. Which, considering my biographic beginnings in that mental hospital, seems an altogether much more in keeping goth medical term to tell people I have.
Sunday, 20 May 2018
Satanic Panic!
Be warned! Although these video tapes are intended for educational use, they do contain actual footage of old people not understanding what teenagers are into and what musicians understand what they will pay money for. They also may contain genuine satanic rituals, satanic symbolism and satanic He-Man and the Masters of the Universe. For these reasons, parental guidance is advised.
I'll return to these later to expand my thoughts, but first, here are the films...
Features both a cracking introduction and a man who has not been able to laugh (I'm serious) not been able to laugh, for 10 years.
A man goes on a 4-day famine for Jesus then wanders into a toy shop where he discovers all toys are made by satan. YouTube commentator Cathy writes: "I'm a Christian and I played with these toys. Nothing happened". But she's called Cathy, which is a woman's name and women are witches.
Now we are talking! Rock music is famously the home of the Devil. Here we find out just how grand that house is. It's got like a pool in the back, a balcony and an island kitchen - that's how grand.
This next video is presented by Cop Pastor. Not as cool as you'd think. Also, the most Satanist park in the west coast, or a man who in no way did graffiti just before saying to the film director "Yeah, I can show you all the Satanism you want, I'll get paid, right?"
This video asks why does Satanism, with it's connection to sex, drugs and metal music, appeals especially to younger people?
Finally, as I think we get the idea, this is The Devil Made Me Do It. It attempts a more adult debate on the subject. Albeit it is Australian and they are made of more rational stuff.
I'll return to these later to expand my thoughts, but first, here are the films...
Features both a cracking introduction and a man who has not been able to laugh (I'm serious) not been able to laugh, for 10 years.
A man goes on a 4-day famine for Jesus then wanders into a toy shop where he discovers all toys are made by satan. YouTube commentator Cathy writes: "I'm a Christian and I played with these toys. Nothing happened". But she's called Cathy, which is a woman's name and women are witches.
Now we are talking! Rock music is famously the home of the Devil. Here we find out just how grand that house is. It's got like a pool in the back, a balcony and an island kitchen - that's how grand.
This next video is presented by Cop Pastor. Not as cool as you'd think. Also, the most Satanist park in the west coast, or a man who in no way did graffiti just before saying to the film director "Yeah, I can show you all the Satanism you want, I'll get paid, right?"
This video asks why does Satanism, with it's connection to sex, drugs and metal music, appeals especially to younger people?
Finally, as I think we get the idea, this is The Devil Made Me Do It. It attempts a more adult debate on the subject. Albeit it is Australian and they are made of more rational stuff.
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