..."That inner work remains an imperfect practice that continues to this day. One in which stumbling and getting back up again is as regular as the practice itself."
It’s a cold and wintery midnight in Melbourne. Sleep evades me and as such it’s a perfect time for some quiet reflection. Upstairs, my wife is sleeping, probably not soundly as she is over eight months pregnant now and getting a little uncomfortable. It’s obviously a highly exciting and happy time — the imminent arrival of our first-born. A long-yearned-for affirmation of life. However, the path to this point has been a challenging one for us. These are uncertain times for everyone, but we felt an even sharper edge after my diagnosis with a JAK2+ myeloproliferative neoplasm (MPN) three years ago.
There’s so much information to digest at first — a lot of fear to be overcome — and some difficult mental gymnastics to be undertaken. For me, while I’m calmer and more focused now, that inner work remains an imperfect practice that continues to this day. One in which stumbling and getting back up again is as regular as the practice itself. Even before Kate fell pregnant, my mind used to race over the uncertainties of bringing a child into this world in the face of my diagnosis. Will I be around to see my child graduate, get married and have children? How will Kate cope if she has to raise a child on her own? How much more difficult will it be to say goodbye? The endless potential of dire outcomes used to wrench my soul. These are big questions of course. All without answers. In the blackness of the midnight hour, I can feel a knot forming in my stomach, and the beginnings of an ugly thought that attempting fatherhood with an MPN might just be too hard. Tripped up by my mind’s opinion again. Yet I tell myself it doesn’t have to be this way. Having a child is going to blow my mind, in the best possible way. It’s something I dearly want to experience and there’s no room for fear in that equation. Ultimately, life has taught me that we have no other option than to — as Paul McCartney so succinctly put it — ‘let it be’. Any means of fighting against this notion simply leads to anxiety, stress, anger and ultimately, ‘dis-ease’. No matter what course our lives take, we must learn to accept it as it is. To remind ourselves that there never was a guarantee life would go to plan. In fact, the only certainty is that it won’t. And that’s OK.
Shortly after being diagnosed with an MPN, one usually hears that there’s still a chance of a ‘normal lifespan’. For a long time I really hung my hat on that. I thought it was vitally important to know that I could have as much time on this mortal coil as the average person. But while this is reassuring in many respects, I eventually found it also created a goal within myself that I was striving to achieve above all else, when in fact I firmly believed my life should not be defined that way at all. I am still comforted by the notion my diagnosis may not have an impact on my lifespan, but I now understand that the vast majority of what happens in my life is outside my sphere of influence. Longevity isn’t a ‘goal’ for me anymore as such. Life — like an MPN — is uncertain, and the potential of a normal lifespan exists, or doesn’t exist, for everyone.
I often use the analogy of falling. At the very moment of our birth, we are in essence pushed off a cliff. Life is the fall. There’s nothing any of us can do to prevent the inevitable. We will all hit the bottom at some point and none of us knows when. Trying to break the fall is futile and will only add to our frustration. In fact, it’s akin to spending your life searching for the key to immortality. Surely it’s better to revel in the utter joyousness of life and simply let yourself fall. In the case of the upcoming birth of my child, it’s exactly the same. My diagnosis is for the most part irrelevant. If I look back at the fears my mind raised earlier, they could be the same for any new father.
The point is that having a child raises all kinds of uncertainties for everyone. For me, that’s been a very big trap. I often feel that I’ve already had my share of poor luck, so me and my loved ones should be protected from any further mishaps. So when things do go wrong, as they inevitably do, it can really upend my boat. But imagine the amount of stuff I’d have to carry around in my head if I worried about every single thing that could happen? Many of these are probably much more likely to occur than anything MPN-related, yet they sit outside my ‘worry zone’. I’ve already let them be. This made me realize I needed to change the way I approached my diagnosis, or at least give myself the tools to manifest change. Unraveling all this began with an awakening of sorts. It involved understanding I could not control the uncontrollable. I’m not at the center of everything. Life is not ‘doing’ things to me directly. It’s just a consequence of being a part of the interwoven framework of existence. So I started stripping back all the layers, the years of holding on to my emotional baggage — the repetitive stories I told myself — and opening myself up to uncertainty. What began next was the lifelong practice of letting things be. And like anything truly worthwhile, it’s a difficult and endless process. The Buddhists teach us that life is often painful, but we are our own master in terms of how much we choose to suffer. In another sense, I’ve heard people say acceptance is the best medicine. I think that’s quite a profound statement in the context of a blood disorder. For most of my life, I maintained a delicate balancing act of holding on to things too tightly, then voraciously ejecting them. It was my coping mechanism. That was more forced; where life pushed me to such a point that I had no choice but to lighten the burden in order to just survive. It was cathartic and seemed rewarding at the time, but it was short lived and usually led to more pain down the track. Now I try to be more considered. I still understand that I will never be truly ready to let things be in the purest sense. I just have to give myself enough space to allow it to happen, regardless of how tough it is to move forward from an unwanted event, or to change a long-held belief that is standing in my way. Fear and uncertainty will always be present, and sometimes it will get the better of me. But I try to remember that underneath all that is where I will truly find myself. I have to let it be, in readiness for life’s next adventure, and in the very near term, for fatherhood.
NOTE: This story has appeared in the Leukaemia Foundation's MPN newsletter as well as on The Good Men Project. My son Jack is now eighteen months old and creating a lot of happiness!
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.