Apparently Dave has never walked across the Harbour Bridge before. Say whaaaaaat?
We’ve been meaning to right this considerable wrong for a while but the timing has never worked out for us. This weekend however, Dave had the brilliant idea to complete the crossing in the cool of Saturday evening. We began our stroll whilst the sun set and a cruise ship left port. We dodged a gazillion tourists and ambled to the Opera House taking in the smells, sounds and sights of Circular Quay.
It was magical.
Saturday night was a complete contrast to the night we had 215 days ago when all I wanted to do was travel to the same part of Sydney for a night on the town. I wrote a blog post about that night which I decided not to publish at the time. It’s not light and funny. There’s no marvelling at the wonder of Orkambi and my rockin’ lung function and how I can run and isn’t life awesome?! Nope. This post is angry and depressing without a skerrick of sugar coating. There are times when living with CF can be difficult and bleak. Sometimes CF lays down a challenge and I respond with fight.
This was one of those times. I’m so glad that time has passed.
* 215 days ago *
Vivid is scheduled in winter. It kicks off after dark. Innumerable people attend. Mobility is required as the installations are mostly outside and spread far apart. Historically, we have had the capacity to easily overcome these obstacles and enjoy this unique festival of light, music and ideas.
Not this year.
This year, the obstacles prevailed. We could not work out how to physically get Dave to the bare minimum of one location without it having too great an impact upon his health. By “too great an impact” I mean landing him in the hospital that very same night. We could have driven into the city. We could have hired a wheelchair. We could have wrapped him up in coats and blankets to keep him warm. We could have packed enough food and drink to feed an army. We could have dosed him up on medication. We could have planned it so his only tasks were to get from our house to the car, from the car to the wheelchair, and then reverse the steps. And it still wouldn’t have been enough. He was simply too ill.
We live with a lot of limitations. Most of the time I make peace with our combined set of limitations. This was one limitation too many and it irked me. Not because of how ill Dave was, but because of the constraints CF placed on our life at that particular point in time. At that moment I didn’t want to exist, I wanted to live! I wanted to leave our house, take a short trip to the city, see at least one, maybe a couple of attractions, buy a gelato at Circular Quay, travel home, and be snuggled up in bed by ten o’clock at the absolute latest. In the grand scheme of things I thought this was a fairly modest desire. And yet we couldn’t make it happen.
I felt frustrated and angry, a little sad, stuck in a deep rut with no foreseeable way out, helpless, and for a tiny moment I was defeated. Unbidden, a thought flickered into my mind. What is the point? What is the point of putting in so much effort every bloody day to try and stay alive and well, when all that effort is ultimately to no avail? When we wind up sick anyway? When we cannot participate in life? When our DNA seems to dictate what we can and cannot do? When all of the resources we pour into our health – thoughts, plans, doctors visits, trial visits, time, energy, emotion, money – are seemingly wasted? I felt trapped by CF and our struggle against it.
When confronted with a ginormous challenge I do not give up. Not when I’m learning to snowboard. Not in first year physics or in third year neuroscience. Not when I can only run 100m at a time. Not when I miss my HSC trials because of an hospital admission. Not when I’m changing the bed sheets. Not when I’m teaching our dog Scout to drop on command.
Giving up is not a concept with which I am familiar. Instead I got grumpy, I scrubbed the dishes super clean, and I crawled into bed to sleep away our reality. Dave quietly considered me from his Armchair of Illness and let my reaction run its course.
The next morning Dave woke up very early feeling extra rotten. It was time. Time to stop this downward spiral, time to seek help, time to get well. I dropped him off at Emergency before the sun had properly risen, when Newtown was still slumbering save for the street sweepers. Another admission began. We did not give up.