When you live with chronic illness you learn there are two types of people. There are the ones who ask wide eyed if/when/how you are going to die and the ones who scoot swiftly around that dreaded D-word. The later probably had a melt down reading that sentence and gave themselves a good reason to shut their browser.
I remember returning to high school after a lengthy hospital admission and being greeted by one of the popular boys who was surprised by my presence. “You’re here” he said, “Everyone said you died”. I could tell for once he was deadly serious, which from this particular individual was equally as unnerving as the statement itself. Completely unprepared for his directness I joked off his statement. Yet it made me incredibly uncomfortable that my life expectancy had become a topic of conversation amongst my peers.
While I think most patients who have spent enough time around hospitals ‘know’ from a very young age (I did a lot of growing up before the internet was a thing) learning to manage others discomfort on the topic takes some time to master. Often it isn’t the prospect of what our future holds which makes us uncomfortable, just other peoples response to it.
Over the years I have got much better at responding to others fear. I have mopped up many tears in unexpected places, said many soothing words to strangers and fluffed the figures around life expectancy until they are comfortable. But every time the question remains; how do you cope with it? How do you live knowing you are dying?
The answer is pretty simple – long gone are the days when the picture google paints of my future concerns me. Science can do many things but making us invincible in not yet one of them. We can either allow that prospect to consume us come to a place of acceptance. Neither will change the outcome but the later will certainly ensure we have a better time in this lotto called life. Disease wasn’t my choice but how I deal with it is.
And amidst all the unknown questions there is also a certainty. One that is all I have ever known. A deep, inherent understanding; a heightened awareness, of the need to live life wholeheartedly, because it is guaranteed there are no guarantees.
While on paper my years might be less than yours that doesn’t guarantee how this is going to play out. That’s another thing living with chronic illness has taught me, often the heartbreaking happens when you lease expect it and who you least expect it will happen to.
Sometimes there is just no why or fair or explanation. We could drive ourselves insane trying to find them and still be standing in exactly the same place.
My own grandmother died at 49 when my father was very small. She didn’t have CF or any other chronic illness. She died in a car accident.
So I strive to make the most of my life as it is right now. If we are brave enough to be really honest that’s all any of us really have. There is freedom in being unattached to what my life will look like as I grow old; freedom to live life on my terms.
‘Coping’ looks different at different times but mostly it is just a different perspective. One that means I do my best to prioritise the things that matter to me. Let’s not romanticise this, that doesn’t mean living a constant bucket list. Rather living with intent. Sometimes what brings me joy is lying on the couch watching Netflix. I can be incredibly impatient, occasionally get swept away by the things that others don’t notice and I have an increasingly low tolerance for trivial shit. I would be lying if I said there were times when I didn’t wish my future was more certain, but don’t we all?
Perhaps it’s because it’s what is familiar to me, but I would rather live appreciating how precious life is than always waiting for tomorrow.
These discussions might not be comfortable, but living a comfortable life doesn’t denote living a good life. Talking about the tough stuff doesn’t bother me any more than it should bother you. While we don’t all live with a chronic illness, we should all do our best to live and continue living a life we deeply love. Because, yes while I am dying, the truth is, so are you. Let’s not make it a point of difference between us or something to dart and dance around.
To end on one of my very favourite cliché’s…
It’s not the number of breaths we take, it’s the number of moments that take our breath away.