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Creating space (5): When people can’t stand you

We have to acknowledge the pain of the present, the traumas of the past, and the broken dreams of the future – Matt Licata

The day I rang my dad to tell him what the plan was for treating the cancer I had been diagnosed with, he said: You haven’t really got cancer, have you? Not really. I read about it on the Internet.

I was so angry, I could barely speak: Err, yes I have, that is why I am now starting what will be probably a year in total of treatment (it turned out to be two). But, even though I was raging, he just couldn’t stop himself insisting that I hadn’t really got cancer.

I now see that it was just him unable to witness me potentially fall apart, or worse. We had just been through three years of life or death treatment with my daughter who was born with renal failure, and two years of mental and physical illness with my mum and so my news tapped into a hopelessness and grief he hadn’t had space to process and which he could no longer manage which is why he felt the need to talk me out of my experience. He died one year later, his big, kind heart couldn’t take anymore.

Don’t wear your heart on a sleeve

My dad is an extreme example of not being able to recognise or bear witness to another’s fear and pain. But, it is not uncommon. Last week, I went to my uncle’s funeral and one completely lovely relative said to me: Don’t cry, Ruth, – words we say to one another all the time which are comforting, but are really, deep down, a plea asking someone to keep it together, behave better, and stop reminding everyone about the pain and agony in their own hearts.

Anyone who has cancer can tell you how, when you tell someone your news, the person opposite you will chime in – often part way through your story – to tell you about their friend/relative/loved one who has/had cancer too. They launch into a massive tale that you really haven’t got the emotional strength to hear, let alone bear witness to. People can’t stand you. They cannot stand to hear your pain, as it taps into theirs until they just have to share their pain, in the hope of feeling better, which in this scenario doesn’t really work.

I  know now this is why one wise doctor advised me to be very careful when thinking about telling people I had cancer. After some God-awful-into-the-abyss-experiences when I felt myself freefalling into the fear which has no beginning or end, I took to interrupting people: Has this story got a happy ending? Otherwise, left to their own pain and sadness, people would quite amazingly finish whatever very long, horrific tale with: AND THEN THEY DIED….!!! #ffs. I know more stories about cancer and kidney transplants than anyone in their right mind can bear.

Holding space

It is very hard to watch someone fall apart under the weight of a life experience, to fall into that dreadful emotional agony, without wanting to stop it, to shush it, to shove it all back down to where it is manageable. It takes even greater strength to stand there and share that agony by acknowledging it and being a witness so that you allow someone to express what they must, but I am starting to think that it is the only way to live this life. We have to acknowledge the pain of the present, the traumas of the past, and the broken dreams of the future as psychotherapist Matt Licata puts it in a lovely facebook post, so that you can be of service to yourself and others.

Managing others experiences

When my baby had tubes coming out of her and I had no hair at all, I used to watch all the mums going off on their lovely coffee/play dates, as I made my lonely way home. We were not invited. It seemed that we were not wanted because we looked different. We had scars which demonstrated that life can serve up terrible experiences inexplicably, without rhyme or reason, so it was easier not to have us around. No one wanted to be reminded of the fragility of life.This made me feel ashamed as if there was something wrong with me: why couldn’t I just be normal? Talk normally? And, most of all not cry. The rejection scarred me deeper than any surgeon’s scalpel.

One mum kindly admitted last year that people dreaded seeing us as you never knew what terrible thing might have happened to us since the last terrible thing. In a strange way her admission made me feel better. It wasn’t me, it was them. Just the other day I bumped into one of those mums who breezily asked me how our health was, I ignored her (a new skill I have when I don’t want to answer a question which can undo me, sometimes I just shake my head) but she asked me several times. I think she asked because it looked like she would get a safe answer in the middle of H&M, because even now she wants my experience to be one that she can manage, and she can feel she expressed the appropriate amount of concern without me touching her fear.

It seems to me that when you get breezy, avoid, or interrupt someone, you are forgetting that they are human, and that they are innocent and whole underneath the wounds which frighten you so much. But it is very hard to not interrupt other peoples’ energy – to let them have the space to let off steam and to let the conversation flow. But if you do, it is in there that you let them decide what the meaning of it all is and allow them to be exactly what and who they are. You are giving them the greatest gift of all – the gift of love. None of us get enough love says meditation teacher davidji to which he adds, and none of us breathes deeply enough.

However, if you cannot hold the space, ask yourself what it is that makes you so afraid? I know I am still afraid, still anxious, still hurting after all this time, and I don’t always manage conversations well. Meditation makes it better but it is agony, which is funny as that is the topic of the last conversation I had with my dad, which would surprise anyone who knew him. He was a rock, who could sit in the company of the wounded, the dying and make it right, make it better. He had a magnificent compassion that was pure unconditional love. However, that night, on the phone, he got me to read out the side effects of my latest round of painkillers, in case they would be good for him, he was in pain, and then he said he was having trouble sleeping/managing/being and I said that he had to meditate, ‘cos I had just read a book by Deepak Chopra on it. He said: Effing Deepak Chopra… and there was a load of chuntering on and more swearing until he admitted: Meditation is so hard. And so it is.

Be not afraid: Energy exchange for the broken hearted

Lately, I have been practising Tonglen a Buddhist meditation technique for overcoming the fear and suffering my dad was swearing about. Danielle La Porte sums it up in the Firestarter sessions as:

Breathe in for all of us and breathe out for all of us. Breathe in suffering— yours, others, the world’s. Breathe out compassion— for yourself, for others, for the world.

Basically when you feel brokenhearted, which I currently do, you breathe in the very pain that is undoing you, and you lean into the unbearable agony of it all, and then you breathe out love. You may feel that you are going to shatter into a million little pieces, but then a little magic happens and you exchange one emotion for another. You do it for yourself, and for all the ones who broke your heart, and for those who broke their own hearts, and by doing so broke your heart so badly that you feel nothing good will ever happen again. And, you keep doing it, in and out, in and out, in and out, until the pain is bearable and not so heart breaking and not so frightening and it has become a noble pain of service. Who knew that the simple act of breathing could be so powerful?

The most often repeated words in the Bible are: Be not afraid and yet it is the hardest thing to be, not afraid. And yet, it is the only thing to be, in order to live life with love and to truly connect with others, we have to learn to be not afraid. As my old dad used to always say:

The only thing to fear is fear itself.

Until you can know that, deep down in your broken, tender heart, the only thing to do is breathe.

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Social media security: Sharing is caring?

social media pic

Recently, YouTube prankster Jack Vale searched the closest posts on Twitter, Facebook, and Instagram to his current location and introduced himself to the people behind them.

The resulting video is really interesting. Most of the people were amazed that a random stranger knew so much about them and one man even felt threatened enough to say he would call the police. Yet, all of the information Vale had ‘on’ this man had been put into the public domain by the man himself.

The dicotomy of people wanting to keep their personal life personal whilst posting it all online shows that we are still on a learning curve when it comes to sharing via social media.

In the past users may have been posting and inadvertently geotagging their location, but as Wikipedia says, enough celebrities have been mobbed at a specific location after posting online and, ebay sellers have had stuff nicked whilst on holiday, to make even the most security unconscious user turn off the location tagging on their smartphones.

When I lectured IT Security, I would use Jose J Gonzalez’s example of teenagers not practising safe sex as analogy for users compromising system security. Everyone wants to practice safe interaction but when the moment arrives, circumstances, time pressures, and the thought that others are getting on down without worrying too much about the consequences, causes safe practice deviation.

The teenage sex comparison was useful when we were worried about users inadvertently breaching security systems. Nowadays the worry is more about users themselves becoming the target of a security breach. What is a useful analogy for that?

I have given many a lecture saying don’t share your address, your phone number, date of birth, place of birth, mother’s maiden name, favourite pet, first job, etc., all things that are asked by systems and are used to create user accounts online. This information is often used to hack accounts and in a worst case scenario, identity theft. But today, in the brave new world of social media this advice seems quite quaint. A quick Google+ about and how much of this info is revealed?

The problem with social media is that we are sharing and caring with our friends who know all this information already, so why not have it online? Facebook is always telling me that I won’t forget another birthday if I use the relevant app and let others know when I was born too. Great! It only gets a little weird when complete strangers come up to you in the street and wish you ‘Happy Birthday’.

We are human, we want to be heard, we want to bear witness, we want to share. I know. When my daughter was born with kidney failure and it was super difficult for a very long time, I kept a blog to explain things to friends and family, and to myself. One day she might not thank me for the overshare. But hopefully, she will acknowledge that I stopped well before I typed: ‘Today, J got her first bra.’
And also, before each post, I thought carefully about an older girl reading her history online. I vetoed some media coverage of her which to me was insensitive. My imagined perception of her comfort with what was shared was more important to me that day than the help someone might have gotten from reading that article about her. Who knows though? As someone growing up in a social media world perhaps she won’t feel about privacy in the same way I do. I have blogged before that information is power but it only becomes powerful when you wield it. And you might ask why would anyone? And how could they use certain information? If people know things about you, so what?

When I had breast cancer, a few of my friends said: ‘Oh Ruth, why don’t you keep a blog about breast cancer?’. But, I didn’t want to share. I didn’t want anyone thinking about my breasts. I didn’t even want to think about my breasts. Even now typing ‘my breasts’ makes me blush (my breasts, my breasts, my breasts). But at the same time, reading other peoples’ blogs on breast cancer helped me in so many ways. Their sharing was caring. Some of those people were so candid and funny, they brightened my dark days. Did they overshare? I don’t think so, they shared what I wasn’t willing to, but that wasn’t oversharing, to me that was bravery.

The boundaries online are as fuzzy as they are in real life, except, as I have blogged before, in real life we know exactly who our audience is, and online it is hard to know to whom we speak and even more difficult, is being conscious of what exactly we are putting out there, if we are not at least a littlebit tech savvy.

The psychological acceptability that has traditionally accompanied system design, especially in IT security, which involves good usability, feedback, system transparency, and a sense that users are responsible for what they do, seems to be intentionally blurred on social media.

In an article on www.national.ae from 2010 Mark Zuckerberg is described as ‘Dr Evil’ for encouraging the thinking that privacy is an old fashioned concept. It mentions too that the Facebook privacy settings change all the time so that users have a hard time keeping information private. In contrast, Zuckerberg’s quotes on thoughtcatalog.com, make him sound completely naive and just idiotically ignorant of the need for user safety and security.

Knowing ourselves what to keep private can be a hard call and can change from day to day. However, not empowering the user to take personal responsibility for feeling safe and secure (the base level in the pyramid of Maslow’s hierarchy of needs) is irresponsible. Social media moguls have a duty to make this really easy for everyone so that when a user presses that post button, they know what they have posted and who is reading it.

Until that happens, Jack Vale has definitely got me thinking about what I share on Facebook, and I have changed a few settings so that I feel more comfortable.

Sharing is caring, definitely. But, in the heat of the moment, a deep breath and a little bit of safety compliance never did anyone any harm.

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Chemotherapy: The year of my hair

Before I started chemotherapy in March 2011 I had had the same hairdo for 20 years. It was long and very dark brown and curly and I loved it. It was, I believed, my crowning glory and I imagined I wouldn’t be the same without it. I found that I was the same without it. I am not my hair but I like having hair on my head.

When my hair started falling out it was shocking to hold great big long clumps in my hands, so my husband clipped it all off and then I looked on the internet for a gallery of pictures to show me how soon my hair would grow back and what it would look like. I thought that way I would feel less sad. At the time, I couldn’t find one so I thought that one day I would put up my own for someone who wanted the same information. So, today is that day.

The pictures are random because I found chemotherapy gruelling. Ideally, the photographs would have been taken at a specific time of the month in the same place in the same outfit. Unfortunately, they were taken all over the place and sometimes there is one month between them and other times six weeks. I took pictures whenever I looked in the mirror and said, ‘Oooh new hair do,’ which happened a lot more than I had thought it would.

I had six rounds of chemotherapy, every three weeks between March and August 2011. My hair started falling out after the first round and I was completely bald by the third round. It started growing back after the fifth round and three weeks after the last round it was fuzzy, grey and thick and thin along its length. Three weeks after I finished chemotherapy I got my husband to shave my head again so it would be even. And my hair has been growing fairly steadily since then.

I had one haircut in April 2012 as it was a bit of an odd shape and then in September 2012 I got my husband to trim the back off with the kitchen scissors to turn it into a bob, rather than the mullet it felt like.

My new hair was completely grey so I coloured it my old colour. I didn’t want grey hair. I wanted to look in the mirror and see a me I recognised. I used a ‘natural’ hair dye one without ammonia in case my scalp was sensitive.

Update 

July 2013: My hair is starting to look like how it used to be.

March 2017: Going grey