Shortly after I first met my partner we were at an outdoor music festival together. At the time I was living on very limited means but I had splurged on a travel mug with the festivals logo and a very nifty lid that allowed me to close the opening when I wasn’t drinking (it was 1995, this was revolutionary stuff back then). I went about the festival with my much-loved mug hanging from my belt only to discover halfway through the day that the lid had fallen off and become lost. I was beside myself, I dragged my soon-to-be boyfriend and my roommate all over that festival several times in the hunt for the travel mug lid. To this day I still joke with my partner about how insane that was, not to mention questioning why he stuck with me in the face of such lunacy. At the time I was fixated on the fact that without the lid the mug was useless as a to go cup and I certainly couldn’t afford to buy another whole mug. But the panic and determination with which I hunted for that lid was completely out of proportion and made me, not to mention my companions, miss most of the fun that afternoon.
What I failed to understand in that moment was one of the most basic facts of life: shit happens and it can’t always be fixed. This principle, I’ve noticed, evades people more and more these days. We live in a world where people expect everything to be fixable. Nowhere is this more evident than in the world of medicine.
Modern medicine has made so many amazing advances in the last century that we’ve come to expect miracles. More than that, we’ve come to a point where we believe that we have a right to them. Case in point: organ transplants.
The ability to transplant organs from one person to another is as close to a miracle as you can get. To be able to harvest organs from someone who has recently died and provide new life to someone who’s own body can no longer support them is an unmitigated blessing. It is a blessing and a privilege to be given a second chance at life. It is not a right. It is not something to which we are all entitled. And it is certainly not something to which any one person is more entitled than another.
We hear of people trying to jump the cue, or circumvent standard protocols or even leave the country to get an organ of possibly questionable provenance. When these people are challenged, the answer is always the same: “But I/he/she will die without it! This is my child we’re talking about!”
In the face of a parent or loved one’s sorrow it is hard to say, “you shouldn’t be doing everything in your power to save your child’s life.” But that is exactly what needs to be said. Because underlying their argument are two very flawed assumptions. First, it is wrong that my child is sick and he or she is entitled to a transplant. Second, my child’s life is more valuable than those of the other recipients on the list and, in some cases, that of the donor.
So lets unpack that first assumption. Finding out that you or someone you love is dying is devastating. It is heartbreaking, tragic and life altering. But it is not wrong. Death is part of life, including the deaths of the people you love even sometimes children. That is not to say that we shouldn’t try to prolong their lives but the illness itself is not an injustice that must be righted. When we forget this we become prone to rationalizing behaviour that, in any other context, we would shudder at. No one is owed a new lung. To receive a new organ is a privilege not an entitlement, and to treat it otherwise indicates a profound disrespect for donors and their families. Let us never forget, for you to get a new organ someone has to die.
No one is entitled to anything that depends on the death of another.
Even in the case of live transplants, to have surgery and give up a kidney is no small thing. It is risky, not only because of the surgery but because you are choosing to go through life with one less kidney, which is completely feasible, so long as nothing goes wrong. Can we really argue that anyone is entitled to make another person take that risk? No, we cannot. Illness is not a wrong that must be righted, it is a sad fact of life which we are fortunate to be able to fight. Rather than being angry that you can’t get an organ fast enough you can choose to be grateful that modern medicine has been able to prolong your life as much as it already has.
The second assumption is that the life of you or your loved one is of greater value than that of another. This is not a belief to which anyone wants to admit but it is nonetheless fundamental to the argument that you or your loved one deserves to be higher on the list or to go to a third world country to get a viable organ. There is no arguing that your child’s life is what you value most, but that is true for everyone. Standard waiting list procedures are based on how long you’ve been on the list and how severe your illness is. To try to get around those procedures requires a separate kind of judgment, which depends on seeing one person as more deserving of life than another, a position that is ethically unsustainable.
When faced with terminal illness we tend to think we must fight it at all costs. This approach allows no space for the possibility of failure. This, in turn, robs us of the chance to make the most of the time we still have together. But what if we take a different perspective? What if we choose to see every extra day as a gift? We still consider the options for treatment and even hope for a transplant, but we don’t sacrifice all of our energy, time and quality of life in the quest for the perfect outcome. Of course we want to be among those fortunate enough to get a second lease on life, but we also know that if it doesn’t happen we will have made the most of the time that we had together.
Of course organ transplants are just one very compelling example of our refusal to accept that life is not, and is not meant to be, perfect. People get sick, relationships end, people get hurt, accidents happen.
We want to believe that if you’re careful enough nothing will go wrong, and that if something does go wrong we have someone to blame and some way to fix it. Of course life isn’t perfect and not everything can be fixed so what good does it do for us to pretend that’s not true? We get the illusion of control by doing things that, conversely, rob us of the control we do have. We allow ourselves to be controlled by fear and guilt and blame. We miss out on the better things in life in favour of perceived safety. Protect your kids from strangers by keeping them under your watchful eye. So rather than being exposed to the infinitely small chance of stranger abduction (perceived safety) you take away their chances to explore the world, gain some independence and build a deeper sense of self-confidence. Not to mention all the things you’re not doing because you’re so busy keeping an eye on your 10-year-old. Rather than scrabbling for anything that gives us the illusion of control, we can choose to accept that we can’t control everything, or remove every risk. Life is one big risk after another, the trick is in how you manage them.
So, repeat after me: Shit happens, you can’t always fix it, and that’s okay.
Please remember to sign your donor card and talk to your family about your wishes. If you’re in Ontario you can register to be a donor online at http://www.giftoflife.on.ca/