And the world keeps turning

Demagogues survive politically by fostering hatred, especially against minorities. They try to divide people up by their religion, country of origin or the color of their skin…. Love and compassion trumps [sic] hatred and intolerance.

US Senator, Bernie Sanders

My wife has breast cancer at the age of 36; and the world keeps turning.

A beautiful person I worked with as a junior doctor was killed by a car two days ago in London; and the world keeps turning.

A tennis partner’s three children were killed in a plane crash ten years ago; and the world keeps turning.

Venus Williams was likened to a ‘gorilla…charging’ on ESPN, and someone at my local tennis club called Serena Williams a ‘silverback’ and complained that ‘they’ can call each other ‘n****r’, but if ‘we’ do it ‘we’re in big trouble’; and the world keeps turning.

Thousands of people seeking safety and a new life are incarcerated on two islands north of Australia; and the world keeps turning.

Aboriginal people were counted along with livestock up until a few decades ago; and the world keeps turning.

Children sleep homeless and exposed in Aleppo; and the world keeps turning.

Millions of Jews, homosexuals, the physically and mentally disabled, and immigrants were killed in the 1940s; and the world keeps turning.

Wars were started based on false intelligence and fear of the Other; and the world keeps turning.

Over a million and a half people have been shot by firearms in the US in the last forty years, whilst five have been killed by immigrants seeking asylum, but asylum seekers are banned rather than guns; and the world keeps turning.

A reality TV star, billionaire property tycoon with a personality disorder, who joked about fucking married women with phony tits and grabbing their pussies, and a gift for rhetoric now leads the world’s largest economy; and the world keeps turning.

Millionaires and billionaires lead many developed countries around the world, including Australia and the US, as this is a marker of the ultimate success; and the world keeps turning.

Let’s not let the world’s turning  be a sign that something is acceptable.

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What is resilience, and how do we develop it?

If I never felt these extraordinarily pervasive strains — of unrest or rest or happiness or discomfort — I should float down into acquiescence. Here is something to fight; and when I wake early I say to myself Fight, fight. If I could catch the feeling, I would; the feeling of the singing of the real world, as one is driven by loneliness and silence from the habitable world… Anything is possible. And this curious steed, life, is genuine. Does any of this convey what I want to say? But I have not really laid hands on the emptiness after all.

Virginia Woolf, A Writer’s Diary

It’s no secret that pain, grief, and loss can provide opportunities for growth. I firmly believe they are not ‘put there’ to teach us, however. I think that is a belief of wearied humans who seek to explain why ‘bad’ things happen to ‘good’ people. I am interested as to how we can engineer a difficult or sad or hurtful situation to create a positive outcome. We are familiar with the maxim, ‘what doesn’t kill you makes you stronger’, but we are also aware that that is not true for many people. It’s good to acknowledge that tragedy can break people, and if it doesn’t kill them, their lives are irreparably damaged by these events.

So what can allow some people to develop a positive reaction to pain, and why are some people unable to do this? I think the difference is resilience.

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The concept of resilience wallows somewhere between the fads of green smoothies, CrossFit, mindfulness, and feng shui. So what is it actually? Among a number of definitions, this is one by Dr Ann Masten, a clinical psychologist and Regents Professor at the Institute of Child Development at the University of Minnesota:

‘Resilience refers to the capacity of a dynamic system to adapt successfully to disturbances that threaten the viability, the function, or the development of that system…I think it is also the kind of definition you can use across system levels, from a molecular level to the levels of human behavior in family, community or even societal contexts.’

During the last two months since Eva’s diagnosis with breast cancer, we have reflected a lot on whether we are ‘coping’ or not. Of course, coping is relative, and can be judged in many different areas. For us, our main areas of concern have been our own mental health, our relationship with each other, and our parenting of two small children.

And there have been some really dark days of feeling like we are not coping, or will not be able to cope, or are ‘failing’ to cope; and then there are other days we feel like frauds and feel like we should not be able to laugh or go out for breakfast or do stupid dances in the living room, because you shouldn’t do stupid dances or eat eggs benedict if you have cancer. You should be sad. Which makes you feel like you’re not coping. Etc etc.

Last week was particularly tough for us. Eva’s chemotherapy had to be cancelled because one of her subtypes of white blood cells, which are responsible for defending the body against acute infection, were dangerously low due to the chemotherapy’s effect on her bone marrow. We didn’t find out until we were at the hospital and Eva was sitting in the chair about to have her intravenous line inserted for the infusion. When the nurse threw her head on to the desk and said ‘oh no’ loudly (always an encouraging sign when a health professional does that, and which I’m sure I have done myself), we felt slightly unnerved.

We left the hospital with instructions to repeat Eva’s bloods in a week to see if they had normalised sufficiently to carry on with her treatment. Eva was in tears, and I joined her when a lovely old lady came up to us and gave us some encouraging words about getting through this, telling me I needed to be strong for Eva (as my chin wobbled and eyes sweated and I looked at the fascinating sign on the toilet door), which again reminded us that people are gorgeous.

The week was a mixture of a reprieve from the harrowing effects of chemo on Eva’s body, and the subsequent G-CSF (bone marrow booster) injections which make her feel like death warmed up. However, we fell into this limbo of waiting for the next stage of treatment, having been prepared for her last round of this type of chemo, and thereby having completed half her chemotherapy. Now, it was a waiting game. With the added excitement of trying to avoid any infection which her body would have minimal resources to be able to fight. We both fell into pretty low moods: deflated, tired, anxious, irritated, and general pissiness at the state of things.

But…we are still here. We still were able to engage in our daughter’s first day at school today. We are geared-up for recommencing chemotherapy tomorrow (neutrophils 3.47, thank you very much). We have made the decision that I will remain off work until Eva has finished treatment (kidneys for sale over on eBay, under the advert for mediocre male escort with odd accent available for $2.99/hr anywhere in Australia if Greyhound bus fares are included).

And life goes on.

I think there is nothing remarkable about how we are managing. My over-riding feeling about how I’m coping is one of ‘sounds reasonably together when he writes, but could do better; hides feelings of imminent mental breakdown due to some weird male pride and inability to articulate thoughts and feelings verbally.’

But here are things which are helping us to ‘adapt successfully to disturbances that threaten the viability, the function, or the development of that system’ – or build resilience, for short:

  1. Connection with actual human beings (in real life, not just WhatsFaceInstaTwittaLinkWeirdosAnnonymous)

And this human connection is TOUGH. It takes effort – effort by others (and thank God they’re making it) and effort by us. It is energy-draining and mentally taxing to try and communicate about how we are really doing, trying not to sound like a broken record or a wet lettuce. Not wanting others to feel uncomfortable by offering platitudes or not knowing what to say. Not wanting others to feel stuck or like they can’t say the right thing. Trying not to say platitudes ourselves, or say stupid things that we don’t actually think or feel.

But when we do…it is good. Eva has been better at this than I, but it is particularly tough for her during chemo weeks where communicating at all is an effort. I have made the decision to talk to someone professionally to help me process things a bit better, as well as make more of an effort to engage with friends face-to-face, or at least Skype-to-Skype. I also went out for a few drinks with a bunch of great guys on Saturday night for the first time in forever and a day, and I was surprised at how just having a laugh and making jokes about ways to confuse your Fitbit made me feel a whole lot better.

So, it’s psychology 101, but we need relationships to build resilience. Plugging on by your self, no matter how busy you are or how undeserving you feel of someone else’s time or ability to withstand your uncomfortable feelings – will not be helpful in ‘adapting successfully to the disturbance that threatens your viability’ (I think that could be a catchy title for a book on resilience aimed at men – ‘Adapt Successfully to the Disturbance that Threatens Your Viability!’, as opposed to ‘Making Your Inner Child More Resilient’).

2. Relaxing

It’s difficult to relax when you have cancer, treatment is beating the shit out of you, you have an oblivious 10 month-old, a dynamite-fueled 5 year-old, and you are trying to manage every-day life as well – which in and of itself is challenging enough. In my case it has included making decisions about work, how to make it viable to stay off my day job for some more months, how to get my daughter ready for school, how to make sure Eva feels as supported as possible and gets time to herself and does something nice now and again and gets some time for gentle exercise, and ensuring that I get some exercise so I don’t have a stroke in ten years’ time (yes, still catastrophising and imagining ten year-old Luca and 15 year-old Mia looking after their terminally-ill mother and hemiplegic, dysphasic father) and don’t melt in a ball of un-exorcised muscular tension and mental stress.

So relaxing, huh? Practical ways for us have been

  • yoga (thank you, thank you, thank you, India, for letting us bastardise and pervert this beautiful practice so I can do it online in my living room)
  • beach walks and swims (only possible in certain parts of the world; likely to cause greater stress in Scotland)
  • good food (eternally grateful for ongoing supply of cooked meals from incredible friends and community members, some of whom we’ve never even met)
  • nature (get your feet in some sand or mud or wet grass, and stare at the trees and smell your herbs – not THOSE herbs…well, actually… – and get hot or cold or wet and get away from where you are usually);
  • massage (check out Graeme or Geraldine’s magic hands at http://www.pureprana.com.au/ if you’re on the Sunshine Coast, also great for yoga. I’ve never once regretted one dollar spent there);
  • reading (an actual book, with pages, that you can hold in your hands and everything)
  • exercise (I bought some gymnastic rings just before Christmas as I could see getting out of the house to do exercise was going to be tough. Think of a walrus doing pull-ups and you’ll get a good idea of my current ability.)

There are lots of other ways, but you ain’t going to be resilient if you don’t build in relaxation.

3. Mindfulness and Meditation

Okay, mindfulness is about as clear as resilience which is about as clear as what Kim Kardashian does for a living (I am honestly not joking when I say I have NO idea who that lady is; all I know is she balances champagne glasses on her buttocks).

Mindfulness is NOT emptying your mind. Mindfulness is NOT an inactive and passive state of avoidance. Mindfulness is NOT relaxation. Mindfulness is NOT mindlessly colouring in mandalas (but it could be mindfully colouring in a mandala, being aware of the colours and hues, the feeling of the pencil on the paper, the response that you’re feeling to creating something beautiful).

Mindfulness is:

  • being aware of your thoughts – how often does someone ask you what you’re thinking about and you don’t know because it’s some weird and wonderful array of unconnected events which you can’t even keep a track of for three seconds after? Are you thinking about what you said yesterday to your boss? Are you wondering about what the scan will show? Can you not believe what your boyfriend said to you? Are you incredulous that that 98 year-old lady cut you off at the roundabout? Be aware of those thoughts, and let them pass through your mind without getting caught up in them. Don’t judge them as good or bad, as you then waste energy in an arbitrary, subjective weighing process. Thoughts are just thoughts; they have no power until you give them power.
  • being aware of your feelings – I used to have to use my wife to tell me what I feel. Which was usually at the end of a long, drawn-out argument where she had initially asked me why I was so grumpy, and I refused to believe that I was grumpy, until she talked me through why I was perhaps angry or scared or disappointed, etc etc, which I refused to acknowledge, until it was blindingly obvious even to me that I was grumpy because I was angry, scared, and disappointed after three hours of arguing with this fiercely intelligent lady. In the absence of a sensitive partner, start by giving some names to some of the feelings that you feel. Alexythymia (an inability to feel anything) is a pathological state which needs to be addressed and explored by a doctor, but an inability to name and identify feelings is very common. If you find it hard to identify what is anger or fear or irritation or sadness, give the sensation you are experiencing some other name that you can relate to. Even call them after animals and describe what they’re doing, e.g. ‘my tiger is prowling’, or ‘my giraffe is falling over’, or ‘my possum is hiding’. (We could make lots of humorous inferences from these, but I am far too mature for that.)
  • being aware of what is going on in your body – is your head tight? Is your stomach churning? Are your shoulders tense? Is your back uncomfortable? Are your hands tingling? Be aware of what makes these sensations better or worse, and ‘make room’ for them. We naturally react to perceived negative feelings in our body as a sign of impending illness or pain. This is obviously very helpful in many circumstances (e.g. central chest pain radiating to your neck and left arm with associated nausea and clamminess – phone 000/999/911, and then be mindful of these symptoms in the ambulance), but when we are already stressed, anxious, sleep-deprived, or it is on a background of years of difficulty identifying feelings, physical sensations can very often be related to our psychological state.
  • be aware of your senses – what can you hear? Where is the pressure on your body, and from what? Do you have a lingering taste in your mouth? Is there a faint smell of something – either pleasant or unpleasant (this is why yogis use essential oils; they eat so many lentils and legumes)? If your eyes are open, observe the space around you and ground yourself by naming five common objects – this is very useful if anyone has severe anxiety, or even panic attacks (which should be discussed with a GP or qualified mental health professional, not treated just by reading a cancer blog).
  • and accepting your thoughts, feelings, physical sensations, and sensory observations with a non-judgemental and inquisitive mind – which is what I am particularly shit at. Damn it. But seriously, this is the hard part of mindfulness; paying attention to our internal state without judging it. We have been taught and have evolved to judge certain sensations and thoughts and feelings as inherently bad or evil or dangerous. This is not a philosophical treatise on morality, but a description of how our psyche views our internal experience of the world. It is more useful and interesting to notice, ‘I seem to be really concerned with what my boyfriend said to me; but I am going to let it go’; ‘I am spending a lot of energy on imagining the scan coming back with a horrible result; I am going to let that go’; ‘I am aware my stomach has been churning for the past few days; I am not going to be scared by this but will acknowledge it could very well be a physiological reaction to the anxiety that I feel about this upcoming scan, which I am deciding to let come and go through my mind.’

It may sound like you need to be the Dalai Lama to achieve this, but you can learn it in some easy steps, and improve your ability over months. It is important to note, however, that there are some concrete things which mean some people have been unable to develop reasonable levels of resilience, and may struggle to learn and utilise resilience-building practices. These include:

  • Substance misuse
  • Mental illness
  • Childhood adversity (including poverty, abuse – of any kind, exposure to domestic violence and substance abuse, and poor relationship (disrupted attachment) with a primary caregiver)
  • Trauma
  • Chronic physical ill-health

These should be discussed and treated by an appropriately qualified person or team to help the individual improve their chance of developing resilience.

Kind of a potted overview of resilience.

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*Featured image property of my wonderful friend and excellent photographer, and a man of great resilience, Andy Rudman.

The Lost Art of Gratitude

Four days ago a social media feed shared something that I had posted three years ago to the day. It was a meme from Elephant Journal I had come across on Instagram:

It is not happy people who are thankful; it is thankful people who are happy.

2014 was my self-designated Year of Gratitude, complete with a gratitude journal and occasional Instagram images of things for which I was grateful. (How can it not be on Instagram if we are thankful for it, along with green smoothies, weird pouts, and odd filters which make one’s skin look like plasticine?)

And it was important for me. I read a lot about gratitude and happiness, and I learned some small but significant lessons about gratitude’s ability to change my attitude.

It has been about seven weeks (okay, who am I kidding: seven weeks to the day) since Eva was diagnosed with breast cancer. It feels so recent, but life has changed so dramatically that it simultaneously feels like a lifetime ago. I read a good quote today in Elizabeth Gilbert’s Big Magic, by Joan Didion: ‘I don’t know what I think until I write it.’ Throughtout my teens and twenties, this was most definitely true for myself. I have changed somewhat in regards to this in my thirties, partly due to some major life events, greater emotional awareness, and a job that requires self-reflection and an ability to identify and suggest theories of mind in others, in person (writing letters to patients is generally frowned upon). But it’s still very relevant, as evidenced by this blog. 

So what do I think about gratitude now? 

I vacillate wildly. 

In less introspective, more cognitively-driven moments, I feel gratitude on a comparative level: ‘I’m grateful that Eva has cancer in Australia and not South Sudan’; ‘I’m grateful that Eva does not have brain mets’; ‘I’m grateful that we have two healthy children’, etc etc.

These are all indisputable facts. But they reek to me of compartmentalisation, and some sort of odd selfishness; by feeling pity for others worse-off than us, I can somehow put our experience in a neat box.

As one or two of us have discovered, feelings and human experience fit in a neat box much like an eight-man tent with 33 steel poles and a ground sheet the size of a football field eases back into its stuff sack.

And my lived experience – and I feel it is unfair to try and describe Eva’s as it hers, and is more complex and multifaceted than mine, obviously – is like that eight-man tent. With eight men in it. Eight rugby players, having a big weekend. With amphetamines and alcohol and Valium and weed and a lot of testosterone and having just won the league. So there are probably eight women in there, too. I’m having trouble with that stuff sack presently.

So this other, less cognitively-administered and compartmentalised part goes something like (and excuse the language): this is fucking shite. And fucking unfair. She had a breast lump 17 months before which no-one followed up on. She’s just had a fucking baby. She just lost a fucking pregnancy and a fallopian tube before that. And now she’s losing her breast. And her ovaries. And she’s like a fucking zombie half the time. And it’s an emotional and psychological cyclone for her. And she just gets worse physically, every two weeks, not better. And she has mouth ulcers. And poor appetite. And nausea. And headaches. And the steroids make her depressed. And she has to try and think about if she wants a new breast. Or whether she wants both breasts removed. In which case if she wants two new breasts. And it could fucking come back. And then what. And is she getting a cold today? And a breast-cancer survivor told her Tamoxifen is the worst drug in the world because it makes you feel like shit, and she has to take that for five years. WTF? 

And then compartmentalising, pragmatic, non-emotionally-involved Simon points out all the rational reasons about why everything will be OK. But I am highly suspicious of this compartmentaliser. I have an inkling that rationalism and reasoning are a way of being positive because it is so fucking terrifying to actually engage with the opposite. Now I’m all for optimism and visualising the positive and purple carrots and manuka honey, but I’m not going to trust those over chemotherapy right at this point in time. 

So, how to find this balance between terror and acceptance, emotional authenticity and cognitive safety switches, positive mantras and nightmarish possible scenarios?

And I am drawn back to gratitude. I am grateful for our amazing healthcare system; I am grateful that if there is a complication, we have easy access to expertise. I am grateful that in this washing machine of emotional gymnastics (or drug-fuelled rugby orgy in a tent – my metaphors are as disparate as my feelings) that people are kind and good and loving. I am grateful that there are still moments, hours and days of beauty in this (I write this in the dark, sitting on the deck of a friend of a friend’s cabin in the Byron Bay hinterland. It’s humid, but cooling slightly as dense raindrops start to fall on the row of frangipanis in front of me. Cicadas and crickets sing their song, and a distant white noise reminds me of the sea rolling in to Broken Head (new name for this blog?). Eva’s lying on the bed inside taking time to read. Kind strangers have opened up their property to us. There is most definitely beauty here of every kind.)

I am grateful for our children, in all their energy-sapping, joy-giving, life-enhancing, tiredness-inducing, lesson-teaching, smile-bringing loveliness. I am grateful to be with my best friend as she goes through this. I am grateful for all her skill and strength and character which always shines through, even in the tears and discomfort and fear and sadness. I am grateful that this is, somehow, a strengthening experience as opposed to a weakening one – despite the gulf of weakness we often feel. I am grateful for friendships, even as they are changed through this. I am grateful that the feelings of loneliness in this journey are challenged by people who elbow their way into the unpredictable and precarious experience when we are not so good at inviting them in. I am grateful for inspirational thinkers and doers and be-ers (beings?) who challenge us to somehow go on believing all the potential good out there. 

And I am grateful, somehow, in some weird way, that we can simultaneously hold the horror and the happiness, the positivity and the pain, the belief and the burden. 

And I feel better after that, and possibly know a bit more what I think now. 

(Main image from the deck of Sue and Pete’s cabin where we are staying for three nights. Beautiful people. Beautiful place.)

2017: How do we live by our values this year?

In every life there comes a point when you have to make a decision about how you will live.

It is this broken road with pitfalls and sharp turns and unexpected traverses that has brought me joy and adventure.

– Alice Walker

 

Something Eva and I have spoken about at times over the last weeks is trying to continue living by our values, even when life appears to be sub-par on some fronts. This has often been in relation to parenting; aiming to still parent by our values even if energy is lacking, impatience is more prominent, or our general tolerance of little people is less than usual.

This morning Eva was discussing about aiming to ‘make friends with discomfort’ in 2017. For her, the discomforts are many and multifaceted and are not limited to the discrete physical symptoms associated with treatment for breast cancer. The complex psychological effects of living with this illness and its treatment continue to surprise us, as well as the inevitable emotional instability associated with tiredness and stress and anxiety. The previous night we sat through a monologue by a well-meaning gentleman who was recommending alkalinated water, manuka honey, and purple carrots (no joke) for the management of cancer. Now, I’ve no issue with alternative medicine, but I do have issue with a lack of evidence for a treatment. I drank at least two glasses of wine during this, and our host fortunately then brought out the port. Eva listened very graciously whilst I imagined creative ways of hiding purple carrots about his person. Might have been a kick-start for him making friends with discomfort.

At breakfast Eva and I discussed further this making friends with discomfort and amended it to making friends with vulnerability and discomfort. The last weeks’ journey has been one of vulnerability in different ways. The sensation of being vulnerable to a life-threatening disease process; the vulnerability towards treatment; the vulnerability of our family to this massive emotional and practical upheaval; the emotional and psychological vulnerability we have all felt as individuals; and Eva’s more complex and deep-seated vulnerabilities covered in other posts about how this process of cancer will change many things about her (see A head of hair, a breast, two ovaries, and a slice of identity; Cancer’s haul.)

Another understanding of vulnerability is how we have related to others through this. This blog has been a vulnerable process, sharing intimate and partially-formed and conflicting and uncomfortable thoughts, feelings, and responses. There was the paradoxical wish to protect Eva and our family and close ranks, with the desire to be open and honest and share the intricacies of this process, as best as we were able. We recognise our need to be open and to involve others, but this necessitates vulnerability as we accept help and kindness and love and care, of quite mind-blowing proportions. I have tried to understand why it is, at times, uncomfortable to accept the care of others. The superficial answer would be pride; it is at odds with our individualistic and self-protecting society. But I don’t think that is the over-riding feeling for Eva and me. I think the vulnerability partially relates to receiving something that we don’t know if we will ever be able to ‘repay’ to others, and accepting that it is not something that necessarily should be repaid. We have tried to be conscious that people enjoy caring and giving and showing their concern in the midst of this hairy bollocks situation, and do not want to disrespect them. (Doesn’t that in itself sound snobby and self-protective? ‘I allow you to help me so that you receive the benefit of not feeling disrespected.’ Boak.)

The fact is, for some people, and we include ourselves in that cohort, it is just scary to accept that people might simply be good, kind, loving, compassionate, generous, and, frankly, beautiful. We grew up with an oft quoted Bible verse ‘call no man good’, and it was instilled in us that we were all born in to sin, we are sinners who are inherently evil and deserving of death, and that soon God will destroy the world and take a chosen few to the new Jerusalem whilst the rest burn in the fiery lake for the rest of eternity.

Funsies. Quite the way to form the world view of a child, regardless of what one believes.

I know it is not easy for many to unquestioningly accept kindness from others, but it has been a great lesson and experience for us. It has demonstrated to us the strength in being vulnerable; as we reach out to others and they respond, we feel supported and not alone and cared-for. We have asked for and been offered help, and it has been given unreservedly.

This evening I was thinking about values in relation to something else. I came across a core values list (http://jamesclear.com/core-values if you want some ideas) from which I chose six which have been significant for me over the past two to three years, but which I want to cultivate and focus on living by in 2017. They are:

  • authenticity
  • balance
  • compassion
  • determination
  • inner harmony
  • optimism

Authenticity to continue being open with others to engender genuine relationship. Authenticity to acknowledge the discomfort and vulnerability, to work with it, and not to repress it. Balance in my attitudes, views and opinions. Listening to and wanting to learn from others (purple carrot man excepted (joking, he was very nice, but it was late, I’d drunk too much, and we weren’t up for stopping chemo and surgery for dodgy coloured root vegetables)). Emotional, psychological, spiritual, relational and physical balance. Compassion for my wife, my children, people I meet in the day-to-day, people who have so much less safety or resources than me, and so much more suffering. And some for myself too, as it makes sense that unless we are compassionate towards ourselves with our own weakness and foibles and character deficits, we will find it difficult to show the same to others. Determination to care for others, to pursue my goals, to work hard at whatever I’m doing, to believe that I can make a difference. Inner harmony obtained by paying adequate attention to physical, spiritual, emotional and psychological health, and living by my values in my relationships, job, and creative endeavours. And optimism, that people are, generally, kind and good and thoughtful and loving. (Don’t worry, I’m not deluded.)

Wishing you all perseverance and hope in 2017; the commitment and strength to live by your values; and a lot of success with purple carrots and a mobile water alkalinator (I know someone who can get you one).