Updated: Mar 5, 2020
A week on from my mum’s death, I thought I’d pen a self indulgent tale of some of you lot, the secret support network. So secret in fact, most of the people did not know they were doing it. Here’s my experience, as a rambling excuse for sprinkling some thank you’s and follow suggestions around the place.
Last summer my mum had a bone marrow transplant. I was in the fortunate position of being able to leave my world behind to sit in an isolation room, on an isolation ward and entertain, giggle and tip toe a line of philosophy and support through a precarious life and death situation. Mum was nuked with chemo until her immune system was zero so the transplant would not be rejected. This meant she had no defenses to fight off any infection and therefore I had to avoid any situations where I may pick up any germs. Even a cold. If someone so much as sneezed near me I had to wait five clear days before I was allowed on the ward, or I could literally be putting people’s lives at risk.
Friends were supportive but careless and after one too many incidents of someone giving me a kiss on the the cheek and then telling me about a chest infection they were battling I resigned myself into isolation too.
The hospital ward upon which I sat most days had wifi, and when mum was asleep and I was struggling to concentrate on running my business from my laptop, my mind started to wander. As mum became more poorly, facebook became an unsafe place to be seen. The blurred boundaries between colleagues, clients, friends and family on there meant I never knew which hat to be wearing when responding. As family life got more grave I craved the silliness that being in contact with people stimulates.
Of course I had heard of twitter, but I didn’t get it. I could not understand why anyone would want to type to a bunch of strangers about what they’d had for breakfast, when none of us have the time to talk get around to calling our mates most nights. However, I was concerned, from a business point of view, that lots of people loved it, and I needed to try and work out what I was not understanding. I tell myself. Not so secretly, I was thinking, who the hell would follow me? In fact, who’d want anyone following you anyway? Isn’t that normally called stalking?
So I thought I’d try an experiment. I created a twitter account anonymously, told no one about it and started typing. I did not want to appear conceited, so I thought I would just post random comments of overheard conversations (hence the username). I might as well have called it NotMuchInterestingToSayNickingOtherPeoplesLines, but it didn’t have quite the same ring.
Now the pressure was on, there were people “following” me and I wasn’t hearing much stuff as I was not able to go out much for fear of infections being carried to mum. I could no longer use public transport and so cycling around London renewed an old habit of mine to take photographs of street art and graffiti. I started posting some of these on line instead of the comments I wasn’t eavesdropping. You can see some of them here: http://www.flickr.com/photos/56312368@N04/sets/72157625430220991/
This lead me to to discover the excellent snatchers of secret London moments @GoodNewsHackney and @AbandonedLondon who shared my passion for noticing the inane giggles left on pavements if you looked hard enough. They are both well worth a follow.
As mum became more poorly I started having to spend more time in the hospital and had less time for any of my interests. People started to fill my time line with pointers to issues I cared loads about: a wealth of information about campaigns, actions and articles. Suddenly I felt more than back in the loop, I felt like I had access to resources I would previously never have found time to dig out. When a friend stood me up for a lunch date, @itsmotherswork, happened to post a link to a video on youtube of him being dragged out a branch of Vodafone, where a sit down protest against their tax avoidance had taken place. It was the birth of @UKUncut. They are a fine and furious bunch, and the issues they are highlighting effect us all. They operate in a way that have enabled me to have an active part something I really believe in, when I could rarely be there in person. I’d be surprised if you are not following them already but you really should be. They were the turning point when I realised twitter had repolitisiced me. Issues I had always cared about, but years or futile marches and the weight of thirty odd of years of being a cynic had slowly made me less involved. Now I had more information and motivation at my finger tips than ever.
When mum was having a good week, she asked me to go to demonstration against tuition fees to represent both of us. Making education a prize of the elite few is one of the most regressive steps a country can take. I had to be very careful not to pick up any germs, so I went with my camera and hung back and clambered up a few lamp posts to take shots and generally kept a watchful eye. After a few hours of taking photos up and down Whitehall, I went to leave and was told I could not. There was no disturbance where I was, Only myself and 50 or so folk spaced out over 800 or so yards. I’ve been at enough demos in my time to know not to argue the toss and just settled myself back in for the wait and got my camera out again. Only things had changed. Within minutes the police line started advancing and trying to push us all towards the entrance of Downing Street. I am not a big conspiracy theorist, but there was definitely trouble trying to be incited. Of all the places in the country to try to force people to assemble, outside Downing Street seemed ridiculous. Yet that was where I was being shoved. The police horses were drafted in and before I knew it, another line of police behind us pushing from the opposite direction. I was being squeezed and pushed from both sides. Having spent three months doing my best to avoid all contact with people, I suddenly found myself kettled so tight my breathing was being restricted. I could not move my arms and my legs were buckling from people I was being pushed into. I had my bike with me and people were being impaled on the handle bars and crushed so hard against me it buckled one of my wheels. I had kids from 13 upwards around me screaming for air and for a way out and to just be allowed home. A kid passed out near me. We were still be crushed tighter and tighter together from all sides with nowhere to go. I began screaming to an officer they were going to murder someone. This was going to be a Hillsborough I shouted. After several attempts at implored them that my bike was injuring people, and that they must stop, I was selected for release. I was crushed so tightly, it took four policemen to wrench me upwards by my arms to escape. I have been to many demonstrations in my years, and saw some pretty brutal police behaviour back in the day, but I had never left a protest shaking and crying before. It was horrific.
Whilst I could still move my arms I took these shots that day: http://www.flickr.com/photos/56312368@N04/sets/72157625462187346/
I was angry. I felt not only had my democratic right to protest been infringed, but that the police’s actions were to intimidate people from protesting and cause violence seemed intentional so they could get the the photo they needed for tabloids to back their aggressive behaviour and claim it was defense of the realm. I was angry that a generation was being taught by the police that peaceful protest was not an option in this country. This was the first demo that most of these kids had been to, for many of them it was their first visit to London. I was angry about the seeds this was planting. I racked my brains for how things could be done differently, for a situation where police intimidation tactics would look ridiculous, and where there could be a demonstration for the positive for change, not a protest against all that is bad. I had an idea. It was a silly idea. I posted it on twitter and asked for people’s opinions. @MediocreDave approved. I knew I was in trouble. He’s not mediocre and he’s not called Dave. You need no more reasons than that to follow him, just know it is a wise selection. The idea was to have a dance off outside the Bank of England for one hour as a celebration of all that is valuable within the arts and to highlight arts funding cuts, and after one hour we all leave the place peacefully as we found it. The event was small but successful, mostly thanks to @aaronjohnpeters who jumped in feet first and backed me up, argued with me and spread the word. He teaches me most from the stuff we disagree on, as he forces me to shovel my points into sentences. Therefore he teaches me loads. Follow him, he’s up for a debate and will baffle you with some piece of 16th century poetry in the process that you are grateful for hearing but stumped trying to fathom the relevance. Cap tip also to street artist dr.d @subvertiser who made the reason we were all there clear and funny and provided me with many a smile over the past few months with his spoof headlines left plastered around London streets.
The Guardian did a great video of the event: http://www.guardian.co.uk/politics/video/2011/jan/14/protest-uk-uncut-ba…
That weekend my horizons changed. It became clear mum’s bone marrow transplant had rejected and that we were working on a very limited time scale. Mum decided she wanted to die at home, so from the end of January I ceased to be anything other than a full time carer. More than full time. Days were filled with changing sheets and making meals and trying to keep my business going and nights were filled with carrying my mum to and from the bathroom and cleaning up the mess and calming her soul destroying screams. Between looking after my dad and making sure the weight wasn’t crushing him and caring for a forgetful 89 year old watching her daughter deteriorate before her eyes, twitter became a life line. You lot were snorkels. I could no longer concentrate on anything more than 140 characters any way. None of you lot knew the hideous daily realities, you’d banter with me without asking how my day was, you’d not give me sorrowful eyes. And you were always there, day or night, there was always someone to have a giggle with. Little moments of laughter amongst scrubbing shit off the floor or my grandmother’s tears were like gold dust. They were snatches into a world I was no where near. @tamsinchan and her amazing news stream kept me in the loop with what was going on in the world by filtering out amazing news articles every single day and posting easy digestible links and notes. I would say this here lady is one of the most valuable sources of information on the internet, and if you are not following her you are simply missing out. I was grateful too for the notes and tweets of @MissEllieMae and @NishmaDoshi for making me feel like I still had contact with the bigger world picture than my tiny world of what the next scream would need me to run to. The politics was a great distraction, it means a lot to me and I felt included when I was so isolated. I loved the evenings when mum would manage to sleep all the way through Newsnight and I could twat around on twitter with you lot like the naughty kids at school, passing notes along the back row.
Tweets from Egypt from @GirishJuneja and @Gsquare86 were a constant reminder that the world was bigger than what I was struggling through. When Mubarak made his speech to step down mum had asked for her oxygen tank to be moved in front of the TV then she could witness it. When she cried and said she was so grateful she had lived long enough to see a free Egypt, it was the longest sentence she had managed for weeks. After posting this, I received a reply from someone in Tahrir Square to say that a group of people had just held a prayer for my mum. Twitter is a constant reminder to me that people are absolutely amazing.
And then there were the funny folk. The people who invaded the two hours a night sleep by tapping me on the shoulder and throwing a custard pie in my internet face. Who’d drown the whirl of the oxygen tank by leaving whoopie cushions lying around my timeline. One morning I returned from a harrowing blood soaked ambulance dash to find @mattwhatsit challenging me to a cyberfight and called me a wally. It felt like someone had just interrupted hell to knock at my door to see of I wanted to be on their team for British Bulldog down the playing field later. Only days after @GlennyRodge posted a series of phrases that fell out of the mouths of people you just wanted to stop talking, the doctor explaining my mum’s ‘Do Not Resuscitate’ form managed to shovel in three of them into one sentence; I was actually able to raise a smile. I cannot think of a single reason why you would not want to have these gents in your life. Unless you like your life being filled with less laughter than is possible. Your days could probably be improved, as mine definitely are, by sniggering at @TheDollSays and @TruthSandwich as well. Not following them already? Oh for goodness sake, get on with it.
When Mum died last Saturday, I really wanted to try and create a wave of something positive to try and wash away some of the horror of the last few months, and especially the ugliness of final few days. I tweeted to ask people to donate blood. That tweet reached over 47,000 people. If I helped nudge even ten of them to get on the blood register, then I achieved something amazing that day. The support and messages from you lot as well as random twitter strangers that bloomed into my world that day was like a speeded up time lapse of spring flowers breaking through the hoarfrost of the toughest day of my life. Special thank yous have to go to the fabulously articulate and witty Mr @mattleys, the ever supportive @helenartisite and gorgeous female oddity and one of five of you I know in the real world @stillmisbehavin (make space in your life to go and see one of the last of the great female sword swallowers – a freak of a show woman. Don’t just follow her on here, follow her in real life, stalk her, fill her shows, go through her bins. She wants to make seedy comments at your expense and I would like to watch). A special thank you also to really kind messages from @amateuradam who made a donation to trees for cities and the ever sharp and informative @SimonNRicketts who let me know, as I was falling heavily into my duvet at the end of the heaviest of days, that himself and @GlennyRodge were raising a glass for my mum.
I don’t have to the words to thank all of you who can give blood and do. By the last stages my mum was needing transfusions of six pints every four or five days – please know you are literally life savers.
I have an email from my mum stuck to my wall at work, and I share it as my desire for you all: “This is my wish for you: Comfort on difficult days, smiles when sadness intrudes, rainbows to follow the clouds, laughter to kiss your lips, sunsets to warm your heart, hugs when spirits sag, beauty for your eyes to see, friendships to brighten your being, faith so that you can believe, confidence for when you doubt, courage to know yourself, patience to accept the truth, Love to complete your life.”
And I wish you twitter, the best bunch of imaginary friends I could ever have dreamt up. I hope at some point, especially when you are having a rotten time, some irreverent nonsense I type may bring you a grain of laughter or escapism as needed.
I’ll end the rambling tale with the most fitting quote anyone has sent me over the last few days: “To die will be an awfully big adventure” Peter Pan.
Thank you all.
With non stalky, non sticky, non weird, cyber love and a grateful hug that lingers a little too long and makes you feel a bit uncomfortable.