A Happy Ending – Part One – Voice of the Patient blog
It seems like so much has happened since last time we spoke that I almost don’t know how to start. The truth is that actually very little has, but its effect on me has been considerable, which I have to say, disappoints me.
I resolved some time ago to attempt to illustrate how I maintain the positive, almost happy persona that so many people kindly comment on. You can imagine that having to start by admitting that the past couple of months have tested that resolve past breaking point adds a little extra to the challenge.
I’ve mentioned before that the way I deal with things getting worse is that I look for ‘milestones’ as I call them. Points at which things change and after which a new set of rules seem to apply. This time my condition has worsened to the point where it now pervades every aspect of my day. I’ve recently been fighting increased breathlessness and severe fatigue but at a level that offers me no hiding place. Prior to this point I have always had time, or room to manoeuvre around the worst aspects of my condition. I’ve had the chance to take stock at times where symptoms backed off and allowed the brief illusion that I was, at least momentarily, fine.
Add to this a very timely run of two fruitless (but appreciated) emergency calls in the same week to Newcastle for potential lung transplants and one could be forgiven for us wishing that October would simply piss off and leave us both well alone.
Coming to terms with all this has posed my greatest emotional challenge to date and it seems paradoxical that I should have no alternative but to air it here in a post I steadfastly refuse to call anything else but A Happy Ending.
So, what was intended to be a summary of how I construct a positive outlook on life with a dreadful disease, has begun on what might at first glance appear to be; ‘something of a downer’.
Back to business . . . .
It was early July 2016, all my immediate family were round except my youngest son Phil who was away playing a festival down south. His absence was a shame but I was comforted that he was doing what he loves and as such the moment was still valid.
To set the scene, the weather was delightful, I was sat in the summer house at the far right hand corner of the garden feeling relaxed but torn between writing or tidying up. Neither was happening and I was becoming frustrated at my lack of focus. What unravelled next was truly beautiful; one of those rare times where so many things conspire to produce something quite unforgettable.
When the sun shines, as it did this day, the French doors need to be opened to cool the air as the south-facing walls are largely glass. It’s all sounding rather grand in stature which at first glance I suppose it is, but in reality it’s my untidy man-cave, full of guitars, amplifiers, oxygen cylinders and a few folding garden chairs. It only really comes alive when I invite close friends to visit, it’s great for chatting and playing or listening to music. I’m usually in my red recliner with my feet on the stool, laptop open and either playing music or writing.
Anyhow, after a while this happened:
I was gradually becoming aware of some very distinct sounds around me: To my right, our eldest granddaughter Lauren (12) and her dad Matt were sat at the patio table working out a tune on acoustic guitars, it was taking shape nicely and the two instruments were sounding crisp and harmonious, Emma (8) and Megan (6) were laughing wildly as they chased each other like butterflies around the lawn. Jackie and our daughter-in-law Cat were sharing a joke in the kitchen off to my left.
These sounds served to add the perfect audio accompaniment to the joyous faces of my two youngest as they played, centre stage in the warm dappled sunlight, their long hair and flowing summer dresses swaying rhythmically as they twisted and turned, hilariously dodging the other’s frantically outstretched fingers.
I became increasingly aware that the whole thing was taking on a very beautiful, almost cinematic quality with the gentle guitars and the girl’s laughter providing a perfect soundtrack. My tummy gave that little tingle of excitement that we might experience on waking to realise this is indeed the day we’ve been looking forward to.
I was being afforded a rare vision of a movie that began some fifty nine years ago, a movie that I’d rarely taken time to sit and watch. I realised that if I started thinking about what was unfolding before me it will be instantly lost. If this was to be more than just a fleeting photographic memory I had to be mindful of the rules. For the next minute or so I switched off my need to intervene or comment and chose instead to just be there as an increasingly blissful silent witness.
It was one of the most beautiful moments of my life.
If it isn’t making sense then please allow me to explain a little about how my head works and see if we can’t find some common ground first. The example I’ve just given is far from entry-level so if you suddenly find yourself wondering what the hell I’m talking about, it’s not you that’s gone ‘off script’, it’s me.
I’ll try to explain the nature of what went on that day, how it is that this is a feature my thinking and, more to the point how it really helps me as a patient of this bloody awful disease. The only way for me to do this justice is to explain the way that I’m wired up and it ought to be a fairly clear progression as I like things to be simple and easy to follow.
Back to basics, what does ‘happy’ mean for you?
I have no idea about the specifics but I look at it like this. We spend our time experiencing three types of feelings and emotions; there are the positive ones, the neutral and the negative. Let’s ditch the neutral for now, they’re neither here nor there.
Positive feelings include; kindness, gratitude, love, compassion, equality, trust, peace and justice etc. Negative ones include frustration, anger, hate, division, discrimination, intolerance, disappointment and selfishness.
If, at the end of each week you find you have spent the vast majority of your time experiencing positive emotions, then by any standard you will be significantly happier than someone who has spent the same period overwhelmed by the negative.
You could be forgiven for thinking that to ask someone with our disease about happiness would be bordering on the sarcastic. I suppose none of us are happy because we have IPF, but surely we can work at ways of being happy in spite of it? For me it all started some years ago when I first began to think about how I think. I made a few simple changes after a while and the results have been great for me, subtle, but gently life changing. I recommend you take a look.
The idea of us changing our ways is often met with lines like ‘You can’t teach an old dog new tricks’ etc. but the truth is we’re better at changing than we give ourselves credit for.
We’ve all changed significantly throughout our lives, often in a day; we adapted to going to school, changing jobs, living with someone, becoming a parent, getting old, using technology, taking plastic bags back to the shops! I’m not suggesting for a minute that we didn’t moan or kick and scream at a few of them, but eventually we changed the way we think and as a result our behaviour adapted to suit the new situation. We’ve even been brainwashed into putting our own bloody bins out every week, how the hell did that happen?
In all these cases we accepted the change because we either really wanted it, or we knew that not to change would bring us a lot more pain than we were prepared to deal with.
Having IPF means our personal situation is quite different; no one’s about to judge us for being utterly miserable, it’s to be expected. That’s where I had a problem, a big problem; I sensed that people expected me to be different, to be somehow submissive to the disease and take on the demeanour of a condemned soul. I think I fell for it for a while because initially I didn’t deal well with my prognosis at all. I remember feeling a ‘distance’ being evident between me and even some of my closest friends, an awkwardness where neither party quite knew how to proceed.
It took me many months, but eventually I’d run my situation through my head so many times there was nothing new to consider. I understood where I was and there was little point reminding myself because it’s not going to change. I have a progressive, incurable, terminal condition that will significantly shorten my life. I now needed a way of keeping such thoughts from constantly playing on my mind because the more they did, the worse I felt.
The thought each day that reminds us we have IPF is just the catalyst, it then sparks all manner of other emotional issues; such as what we’ll miss out on, not being there for our partner, our kids or seeing our grand kids grow up . . . I could go on. This usually happens without us realising how and all of a sudden we feel miserable again. The more our thoughts creep up on us like this, the more chances there are that we’ll slip into depression.
Remember, having the right to be depressed doesn’t mean we have to be. We also have the right to be happy.
There will be those among you who currently feel totally overwhelmed by the devastation that accompanies diagnosis. I know, I’ve been there and it’s the very reason that I’m writing today. I follow much of what is posted on social media and I shed many a private tear for those without the support or the experience to be able to make the best of the appalling situation that has been so cruelly thrust upon us.
The cold truth is that we can cry all we like but the prognosis remains. The way I deal with it is as follows.
In my head thoughts crop up every few seconds but the first one of the day is often the reminder that I’m seriously ill, typically I’m heading for the loo. Somewhere between setting off on the ten pace trip and getting there I either remember or realise that I struggle to breath. Because it happens every day I’m well used to recognising the thought process; initially it’s just – ‘oh, don’t forget that you’re ill’. then it’s – ‘actually you’re very ill’, – followed by – ‘I’m out of breath and I’ve only walked a few yards’. – ‘.
Now, all that happens quickly, in a matter of a few seconds and often it would become more and more intense. If I stayed with those thoughts they might build into something overwhelmingly depressing. Sometimes they did, but sometimes they didn’t.
When they didn’t it was because something interrupted the pattern of thinking; something else took priority and led me off in a different direction. Maybe something significant was in the diary, perhaps the toilet roll was getting near to changing time or the window blinds needed adjusting. Whatever it was, it directed me away from dwelling on all the negative stuff.
Crucial for me was to figure out how I could ‘step in’ and interrupt that pattern of thinking by myself as soon as I noticed it, so that it didn’t build up to be that all-consuming dark mood that I often had to face. To do that I had to listen to my thinking.
It’s your turn now, all you need is the willingness to try something new and a mental image of your TV remote control.
I recommend that you have a go at simply listening to your inner voice and notice when it’s thinking depressing thoughts about your illness. It’s a little odd if you’ve never done it before but perfectly normal and very useful. The more time I spend listening to my thinking, the easier it is for me to avoid getting into that dreadful, negative frame of mind.
The piece earlier from the summer house is an example of being – ‘in the moment’ – enjoying now and not considering anything at all apart from what is actually happening; no thoughts of the past, none of the future, just thoughts of now.
In a slightly simpler way, the same is true of being engrossed in a book, film or TV programme. It’s for this reason I found the remote control a handy image to carry in my head. The only features I use are ‘Pause’, ‘Play’ and ‘Select Channel’ but it was enough to help remind me that I have the same control over my thoughts as I do over what I watch on television.
Once I was able to identify the depressing thought beginning (just as I would with a TV show I hate) I would press the pause button and change the channel, which helped my attention refocus on something other than the bad stuff.
It takes practice of course but you have all day every day to try it, you’re always thinking and if you miss one, there’ll be another chance coming along pretty soon. The more you listen the easier it gets, but it will take time, the sooner we start, the sooner we can reduce the pain. If I can help just one person do that, then I’ll be delighted.
If you have any genuine difficulty with this stage then leave me on note on the Action for Pulmonary Fibrosis website and I promise I’ll try and help.
In the next (shorter) instalment I’ll be back on form and will share some other tips that help me feel positive and happier than most people think I should.