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Seventeen

Today is my 17th second birthday: it’s been 17 years since I took my last breath with the lungs I was born with.

Every dawn brings a new day I wouldn’t have had were it not for my donor – and were it not for their family, who chose in their grief to give others a second chance that their parent, child, sibling didn’t get. I feel honoured every day and I hope I continue to honour them in turn.

However, I’d be lying if I didn’t say that there’s something about today that feels different and I’m not sure why it’s this particular year. All of the usual thoughts and feelings of joy, gratitude and celebration are there, strong as ever, but there is something else layered on top: I miss people.

When we held Laughter For Life II seven years ago, we worked out that I’d lost about 20 friends, a rough average of one every two years of my life. After my friend Kirstie died, I simply disconnected from the CF and transplant community; I couldn’t do it any more, it hurt too much. And for the first time since I was a teenager more than five years passed without losing anyone.

Grief behaves in mysterious ways. Like an ocean, it can sit calm and placid then twist without warning and begin to roll and roil, then thunder and crash, terrible and terrifying. Moments after you think you’re fine, you suddenly find yourself drowning again.

That’s where I am today, being buffeted by the malevolent seas of grief. I miss my friends.

I miss getting random texts from Emily about whatever scheme she was about to rope me into. I miss logging onto social media hoping to see comments and posts from the Jesses or Tor. I miss jumping into treatment discussions with Toria on the message boards back when they were polite and supportive. I miss getting CDs in the post from Anders as he tried gamely to further my musical education. I miss all the hours of laughter as our collective humour blackened in the face of unimaginable, unstoppable forces rising against us.

Today’s a day for celebration. I’m still able to enjoy it for the wonder it is. I’m still here and I’m here because of one person who I can never thank. Even when I feel unworthy, I’m honoured by the life they’ve given me.

But I also have a deep sadness in my soul that I can’t celebrate this with my friends. And I’m reminded of the lyrics from Les Miserables:

Oh my friends, my friends forgive me
That I live and you are gone.
There’s a grief that can’t be spoken,
There’s a pain goes on and on.

Disagree more

When we find people we can respect while respectfully disagreeing with them, we grow. We grow because rather than taking offence at their views or thinking negatively about them as people, they help us challenge our own beliefs simply because they’re different.

Difference is important. Difference creates challenge. Challenge is what powers the world.

“To fly we have to have resistance.”

Maya Lin

Without difference, without resistance, without challenge, nothing changes. Not individuals, not organisations, not countries. Only through opposition does anything shift.

Once we open up and take in opposing views one of two things happens: we change our mind, or we understand our own views better.

I subscribe to Seth Godin’s blog because I respect him and love his writing. But I also disagree with him often. When one of his posts lands in my inbox and I disagree with it, it makes me stop and ask myself not just why I disagree with it but what I actually believe (and why). 

When we find people who challenge us our thoughts, views and beliefs clarify in a way that helps us grow and move forward.

I hope you disagree.

What works for you

Dmitri Shostakovich composed extraordinarily quickly. Once he heard the piece in his head, he would pour the notes onto the page. He could manage 20-30 pages of score a day and rarely made corrections.

I can’t write that fast. I can’t write music at all, but let’s leave that to one side. Words vs. music may be an indirect comparison, but even with the benefit of technology I can’t come close to that speed (or endurance).

Shostakovich, however, constantly worried that he worked too fast. He wrote a letter to a friend saying, “Undoubtedly this is bad… composing is a serious business.”, an idea that is so clearly ridiculous that it left me hoping his friend wrote back to tell him as much.

We must never get caught up in the idea there there is one right way to do something – a proper way or, even worse, the “done” way.

My wife and I make tea totally differently, but they usually taste the same. 

Lee Child’s writing process is totally different to Haruki Murakami, but they have both written bestsellers.

Clint Eastwood, when he directs a movie, shoots as few takes as possible, while David Fincher is renowned for shooting 20, 50, even 100 takes of a single shot before moving on. They’ve both made masterpieces. 

The way we succeed is not by doing things the way someone else does them, but by finding the way that suits us and owning it.

After all, for all his worrying, Shostakovich was a pretty solid composer all things considered.

Other people’s shoulders

When we have decided which boulder we’re going to put our shoulder to, the next question is whether or not we’re able to shift it on our own. 

The size of the boulder is directly proportional to the size of our ambition. The bigger our goal, the bigger the rock.

Our ability to move the rock is inversely proportional to the size of the boulder. The bigger the rock, the hard it is to shift.

That means if our ambitions are lofty, we cannot hope to move the boulder without other people putting their shoulders to it alongside us. We can’t be proud, we can’t be shy, we can’t be ashamed to say that we need help to achieve our goals.

If the rock looming over us is the one we really want to push, other people’s shoulders are the most important part of our efforts. 

Don’t stop starting

When we finally overcome our nervousness about getting started we feel great. The first push of the boulder is always the hardest, momentum will help from here.

The reality, though, is that the hill is often not as steep as we thought it was and the momentum may be halted by tree branches, smaller rocks or even people rather than rumbling its way to the bottom untouched.

When that boulder stops no one can ever say for certain whether it’s gone as far as it can. It may be leaning up against an insurmountable obstacle or an unrelenting opposition, or it might be a finger-push away from barrelling down to its destination. But that’s not the point.

The point is that we have the chance to start again. We have a choice.

We can start pushing the same boulder and see if it’ll budge, we can start pushing a smaller rock on the same hill to see if we can get that one going instead, or we can choose an entirely different hill on which to find an entirely different boulder we think we can shift.

Of course, we also have the option to do nothing, to tell ourselves we can’t do it, that we’re done with pushing boulders.

We must never, ever take that option.

Regardless which boulder we decide to put our shoulder to, we must keep pushing. We must try to see how far we can go with this one, and the next one, and the one after that.

It doesn’t matter how many rocks on how many hills we try to shift, we must not stop starting.

Starting

Starting is hard. Things get in the way, we doubt ourselves, we worry that if we start we may not finish, we may not succeed, we may not make it to wherever we’re going.

People will often share the old Lao-Tzu quote, the “a thousand-mile journey begins with a single step”, but they often miss an equally great truism from the same chapter:1

“Rest is easy to hold.”

Lao-Tzu, Tao Te Ching

And so we hold our rest because if we start we may fail.

“But wait,” people say, “Failure is a good thing.” They tell us that Edison said “I know 10,000 things that will not work” 2 and while it’s lovely to know other people have done it before us, it doesn’t make failure easier to take.

Eventually, when we finally take that fabled first step, we remember: the reason people start is because starting feels good. It’s scary, fun, intimidating, energising, exhilarating, uncertain and, most of all, it’s a beginning. We can say, “I have started.” Our journey has begun, however long it may take and wherever the road may lead.

We can never feel the same regret for the things we start as we do for the things we never begin, so if you’re thinking about starting something, start.

Because you can. I believe in you.

  1. Chapter 64, Tao Te Ching, quote taken from the Stephen Addiss and Stanley Lombardo translation [non-affiliate]. []
  2. He didn’t, by the way – the quote attributed to him by biographer Walter S. Mallory in a 1910 biography was “Results? Why man, I have gotten a lot of results! I know several thousand things that won’t work.” Source: Quote Investigator []

Other people’s productivity

We all know the people.

The people who work 18 hours a day, sleep for four and spend the other two in the gym. The people who post screenshots of their 4am alarm clocks, their “getting my pump on” Insta stories or their late-night “I’m still at it” Tweets.

When we see them, we often forget a simple truth: they are not us.

We mustn’t get sucked in to living someone else’s life. Other people’s productivity is their own. Their habits, their lifestyles, their beliefs aren’t who we are. We can aspire to be as successful as someone else, but we should never aspire to be someone else.

My body won’t let me operate on less than seven or eight hours of sleep, so I’m never going to work 18-hour days. My brain won’t let me go through a day without spending time with my wife, chilling out, eating together, watching TV, so I’m never going to spend all my waking hours at work.

That doesn’t mean I can’t be successful. It just means I’ll do it differently to someone else. Which is the point.

The moment we start to build our lives according to the way other people build theirs, we lose touch with who we are and how we achieve what we want to achieve.

You do you, not them.

Gratitude when times are hard

A good friend of our family died suddenly and unexpectedly last week. It’s tempting to trot out that old saying:

“Don’t cry because it’s over!

Smile because it happened!”

Ludwig Jacobowski

If we hadn’t had his many years of love and friendship we wouldn’t feel this sad, so we should be grateful he was in our lives at all. Anyone who’s experienced grief, though, will know it’s not always that easy. 

Gratitude is hard when things are tough. Whether we’re riding waves of grief, battling chronic pain or waiting interminably for a transplant that may never arrive, finding things to be grateful for can feel like a fool’s errand.

The trick, I’ve discovered, is to find the smallest possible thing to be grateful for. 

Be grateful for the phone in your hand that lets you distract yourself from difficulty on TikTok, or for the chair you’re sitting in while you’re doing it. Be grateful for the tea you’re drinking, or the mug you’re drinking it from. Be grateful for the pen you’re writing with, or the computer that lets you buy a condolence card without going to a shop.

Gratitude isn’t reserved for big things. Once we know that, we can find it wherever we look, even if our eyes are clouded by tears.

The challenge of living our values

If you can live with Triumph and Disaster
And treat those two imposters just the same:

Yours is the earth and everything that’s in it

Rudyard Kipling, If

Sitting on my dad’s chair in his study in my childhood home, I would read the framed copy of this poem that hangs on the wall at least once a month. I’ve lived by Kipling’s words for as long as I can remember.

When things go well, I celebrate. When things so badly, I do my best to do exactly the same things. I stop work early, I treat myself to time playing games or watching a movie, I enjoy a drink of my favourite whisky.

Today, on hearing that I hadn’t been shortlisted for a job that I had publicly declared an interest in, I realised that I needed to go further.

Because I’d tweeted about it and written a Linkedin article about it, and because if I’d been successful I would have Tweeted about it and posted about it on Linkedin, I owed it to myself to do the same now I’ve been unsuccessful.

I can’t say to myself that I treat triumph and disaster just the same if I stop myself short because this bit of it is embarrassing. Of course it’s embarrassing. Of course I don’t want to share it. But holding ourselves to our values is not about what we want, it’s about what we do.

So I failed. And I failed publicly. And it’s embarrassing. But I have lived up to the standards I set for myself. I can hold my head high because I honoured myself. That is more important to me than any victory I might win or any defeat I might suffer.

When we refuse to let failure beat us down, we discover it can lift us up.

To Not Be OK

I recently wrote a thread on Twitter about smiling through it. I wanted to share words of encouragement to people, based on how much I remember the concept of this blog helping me when I needed it most.

Remember: every day there is brightness. One tiny thing that makes you smile, one infinitesimally small thing that’s funny or cute or pleasurable in some way. Hold on to that one thing. When you go to bed at night, remember that thing. Write it down if you want to. That one symbol of brightness can sustain you longer than you can possibly imagine.

From @olilewington on Twitter

And I stand by that. What happened in the rest of the day was the problem.

I’m currently struggling with chronic pain, often severe, in my lower back and tailbone. Because of the dangers of my going into a clinical setting while immunosuppressed in the current climate, I’m having to talk to doctors – including a consultant in pain management – remotely.

That means I can’t be prodded, poked or pin-cushioned, the docs just have to use their best guess to come up with a treatment plan. I have been prescribed strong painkillers that do almost nothing to combat the pain, so I’m taking less and less of them.

All of that adds up to very, very bad days when things flare, which seems to be every couple of days. When that happened on Friday after posting the thread, I lost track of the good things.

My mood nose-dived and the day got bleaker and bleaker from the early afternoon to the evening. I eventually had to go to bed at 7.30 because it was the only place I could be without my back hurting. When I was lying in bed, struggling to control my pain and my emotions, everything was bleak and awful, everything was dark and clouded. There was no brightness, no chink of light as I’d described it. Only black.

The following morning, with things a little brighter and pain a little lower, I chastised myself for losing sight of the brightness. I was angry with myself that I wasn’t practising what I preached.

It was only later in the day that I realised how unproductive that was. Why tell myself off for being overwhelmed by negativity? Why increase those negative feelings by beating myself up for feeling them in the first place?

This runs to the core of my beliefs: kindness to oneself. Kindness of thought and kindness of action.

Smiling through things isn’t just about the mantra of looking for light, it’s about the experience of battling against darkness.

Let’s agree, then, that even if we can’t find the light today, we can look again tomorrow. To repeat my favourite quote (which many people will be sick of hearing):

“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day that says, ‘I will try again tomorrow.'”

Mary Anne Radmacher