On Loan
Note: The majority of the following post was written prior to being on my chemotherapy regime (just to offer a bit more context).
‘We eventually lose everything we have, yet what ultimately matters can never be lost. Our houses, cars, jobs, and money, our youth and even our loved ones, are just on loan to us. Like everything else our loved ones are not ours to keep. But realizing this truth does not have to sadden us. To the contrary, it can give us a greater appreciation for the many wonderful experiences and things we have during our time here.’ Elisabeth Kübler-Ross, Life Lessons.
It’s a confronting concept - everything we have, and everyone we love are just on loan to us. We all know we have to die eventually, yet many of us can go for several years or decades without having to seriously acknowledge this harsh truth. In my teens and twenties, when I was feeling youthful and perhaps a little bit invincible, any passing rumination about my future was always based on the assumption, “When I’m older, I will….”. These days, after being diagnosed with MF, any similar contemplation about my future now begins with, “IF and when I’m older, I will….”. It’s a subtle difference in language, but a profound difference in perception. Disease has taught me that growing old happily is not a right, it’s a privilege.
Some may read into this as though I’m preparing myself for a premature death. This is far from the truth. Thanks to modern medicine, I still have a very good chance of living a long and rewarding life. Living with MF has ‘simply’ forced me to acknowledge my own mortality and in the process, put me more in touch with the true frailty of human existence. No matter who you are, how young and healthy you might be, the time we spend with our loved ones is never guaranteed. It’s a hard reality, but a reality nonetheless. If there were anything good I can take from having this disease, it would be this understanding.
Awareness of my own mortality and the impermanence of life is one thing, navigating that awareness was another challenge altogether. I remember sitting in the doctor’s office and hearing those few brutal words for the first time “You have cancer”. Prior to this moment I was feeling strong, fit and robust and there was nothing to suggest my future was under threat. My relationship with Nicole was in its wonderful early stages, I had graduated that year with a PhD, and had run a half marathon in personal best time only a few months prior. I was striving into the future feeling healthy, self-assured and excited about the times ahead. But suddenly my world had flipped upside down and I was in deep trauma. I was now confronted with a future that I had little control over and would be shaped by the unforgiving whims of an unpredictable disease. What to do with this information? How do I step into the future without knowing whether there will be another step there ready to catch me? How does one live without a sense of security in the world?
The early days after diagnosis were far too distressing for me to crystallise any of the thoughts racing through my head. I was traumatised and there was no room for any deeper contemplation of my future. Like a person in mourning, I had no choice but to crawl into a corner and endure the grief. But as time began to heal the early wounds, and with Nicole’s love, support and wisdom, I became more able to cope with the intensity of these feelings. The disturbing thoughts never went away, I simply found a way to ‘package’ my feelings and put them to one side, away from my direct attention. Hiding my thoughts helped to soothe me, allowed my energy to grow and ultimately, I could focus on getting on with my life.
It didn’t take long before opportunity knocked and I began to forge a new career. Nicole and I had moved in together and we were once again going on dates and escaping for an occasional holiday. Late summer had now arrived and we had finally begun to regain some consistency and routine in our lives. Life hadn’t returned to normal but it was certainly becoming more comfortable. We started to remember that we still had a future and that we could plan accordingly. But with every ambition, there was always a niggling presence in the background. No matter how well I suppressed the anxious thoughts about my illness, they could never be tucked away forever. It was a pressure-cooker and there had to be some release eventually.
Every single person experiences anxious or distressing feelings from time to time throughout their lives, but like me, much of this anxiety can easily be packaged up and ignored, usually under a layer of alcohol, fatty food, tv, denial or anger. Before I met Nicole, I had become very adept at suppressing any difficult feelings and acting like they never existed. After all, what positives could be gained from acknowledging and examining this painful side of myself? Instead, I would channel my energy into work, sport, weekend partying and drinking. If that wasn’t enough, I would try to resort to humour. Failing that, I’d shut down and retreat into myself. It was classic escapism.
The strategy worked. I lived and operated in the world quite well. I hadn’t become seriously depressed and I was achieving a lot of success in my education and sporting endeavours. There was no obvious incentive for me to change my love of being an escapist. Trouble was, as I had reflected upon years later, there was never a point in my early life where I had experienced serious trauma or tragedy. There were no wars, no car accidents, no immediate relatives or close friends that had lost their lives in tragic circumstances, and there was no financial bankruptcy. My childhood and early life was relatively unremarkable and I was protected - in a good way - from most of life’s sufferings. That was of course, until my diagnosis of MF finally blew the lid off my escapist pressure-cooker and forced me to find a different way of coping.
The timing of my relationship with Nicole couldn’t have been better in this regard. As I have already reflected upon in a previous post (Our Greatest Achievement, 1st February, 2017), Nicole was always there with me in the trenches. She taught me not to shy away from what I was feeling, rather to try and hold onto my thoughts and examine what might be really happening underneath. It’s very easy to be open and receptive to the more happier and pleasurable aspects of life, but being open and receptive to the darker thoughts is a much more challenging proposition. For a perpetual escapist like myself, fronting up to my fears and anxieties felt like having a severe case of acrophobia (fear of heights) and peering over the edge at the top of a skyscraper. I hated it, but my love for Nicole and the emotional demands of my diagnosis kept me coming back to the edge and confronting my fears. Nicole encouraged me to seek some therapy and after a while, we both went to see a relationship counsellor. Our counsellor was amazing and through her guidance, we gradually accumulated a collection of tools that enabled us to better understand ourselves individually, as well as to understand each other. I don’t believe I’ll ever completely overcome my fears and fully let go of escapism, but I can now look at the concept of my own death and be ok with it. I can now ‘lean into’ my fears rather than just looking away and retreating. Nicole once mentioned to me about a choice I can make between ‘surviving’ and ‘thriving’. I now know that in order to thrive in life, I must not hide from fear.
As I sit here on the couch typing, with a second round of fludarabine circulating through my body, I’m pondering the moment in two days time where I will be admitted to hospital for my remaining chemo and upcoming transplant. From Sunday evening onwards, I will be fully encapsulated within a hospital ward and I won’t be leaving for about 4 weeks. If my liver, heart or kidneys fail from toxicity or infection, I may never return home. The chances of this happening may be low, but it does mean that every “goodbye” I utter to Nicole or Jarrah could be my last.
In my post about Jarrah (Our Brown-Eyed Girl, 17th February, 2017) I reflected on the impermanence of life, the need to be present in the moment, and to cherish and celebrate the times I am given with my loved ones. But think about it, is being enthralled or transfixed with every passing moment of our lives really that easy? Can we realistically celebrate each and every day as if it’s our last?
I would argue that as human beings, we are simply not built to be wholly present and ‘in the moment’ all of the time. Cancer or no cancer, we are all prone to distraction, inattentiveness, dreaminess, and complacency. I can be sitting down to a fantastic dinner with Nicole and Jarrah, the two most important people in my life, and completely miss the beauty of the moment simply because I was ruminating about something that happened at work earlier that day. Similarly, Jarrah could be playing in the lounge room with her crayons and scribbling down her latest interpretation of a fish, yet I would be distracted by a meaningless tv show, or the latest newspaper headline. How do I get my priorities so wrong? Do we really have the room or stamina in our minds to be in a heightened state of celebration all of the time?
I’m not going to begin beating up on myself because I have failed to embrace every moment of my life. I don’t believe it is humanely possible and I’m not going to make myself feel guilty when distraction or laziness occurs. I want to embrace and celebrate life as much as the next person, but I also know that I’m a fallible human being who has to operate within the confines of a finite emotional space. Carpe diem is an inspiring aspiration, but every single day?? C’mon!
I may not always be able to seize the day, but I always appreciate moments that shift and enrich my perspective of the day. Art, at least when it’s done well, has an amazing ability in break our complacency and realign us with the emotions that matter. Many of us might have a special movie, song, painting, place in nature, or other piece of art that shifts our mood in an instant. For me, it is a song, the same song that was playing while my beautiful wife was walking down the aisle.
The song is called Hold My Hand by an Australian artist called Jen Cloher and retells the story when Jen overheard her parents having a conversation out on the balcony one morning. Jen’s mother, suffering from severe Alzheimer’s, asks her husband ‘How did we meet again?’ to which he provides a moving and loving description of their first meeting and early relationship. Moments later, Jen’s mother responds once more, ‘How did we meet again?’
Watching Nicole, my gorgeous bride, walking down the aisle while the final crescendo of Hold My Hand was playing was THE most powerful moment of my life. Our love will last forever, but Nicole’s physical presence is temporary. The song helps me own that truth. We are all on loan, but we can all still celebrate love and life.