The Phoenix Zine

Shadows Cast by Stars

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“Don’t forget the miracle.”  When I reached the age of majority and had to switch my care from the Hospital for Sick Children in Toronto to Toronto General Hospital, this was the advice of one father during the transition class my mother and I took.  The sentiment has oft been repeated to me since that day ten years ago, and has turned into grit rubbing under my skin.

At the time, as a liver transplant recipient, it was pretty clear what that meant.  My whole life after the age of five was the result of a parents’ empathic reaction to the accidental death of their three year-old son.  I received the gift of life contained in a liver.

And when I was finally old enough to understand the enormity of that gift, I never lost my sense of wonder towards it.  There is no question it is an incredible gift.  My new liver completed me, and I had a relatively ‘easy’ transplant experience (if any transplant experience can be considered easy).  What I mean is that I had limited bouts of rejection, no illnesses inherited from my donor, and no liver failure in what will be twenty-five years this coming Valentines Day.  When it comes to a good transplant experience, I could not ask for more.

I always considered my liver transplant a miracle, and in the 1980’s when my transplant occurred, it truly was one.  I was the twelfth child to have a liver transplant at the Hospital for Sick Children.  If I had been born a mere two years earlier, I would have pre-dated the science needed to save my life.  In those days, having a transplant was really rolling the dice, there was no guarantee you would make it through the surgery and there were many unknowns about what would happen if you did.  It just gave you a chance to live as opposed to a certain death from organ failure.  So when the transplant worked and my life was given back to me, my whole family knew that something miraculous had happened.

But part of what defines a miracle is its unique nature.  Miracles are like snowflakes in the sky or brush strokes on a canvas – no two are the same.  Finding two or more that were the same would make them less special, more commonplace and less miraculous.

Needing and receiving a heart transplant in 2009 felt like finding two identical snowflakes.  Once again, my life had been endangered by organ failure and once again organ transplantation was the only treatment.  For both organs I waited a mere three months, while others wait years for organs or die waiting.

Although after the heart transplant I had the initial buzz of being able to breathe properly and seeing my comparatively small, new heart on x-rays and echocardiograms, once my drug-induced high abated, I was left with one main question.  Now that I had received my second transplant, was a transplant still a miracle?

Looking around at fellow transplant recipients just left me more confused.  We as a group seem to alternate between two extremes, those who hold on to the miracle for all they are worth and seem to always be thankful or happy and others who seem to take their change of organs in stride and feel free to complain as needed.  Most of us are very superstitious as well, knowing that our health can change in an instant and fearing that a negative word or forgetting to ‘knock on wood’ will jinx us and our new organs.

Seeing such behaviour only makes me harder on myself.  I know from experience that transplantation is a miracle but I continually berate myself for not being a part of the first group, feeling eternally thankful and happy about the gift I received, even if it was my second time receiving it.  I also often feel that complaining in any way about the gift I received is a betrayal of my donor and the miracle itself.

Every time I see the scars on my chest I am reminded of what has happened.  I cannot be eternally happy about needing and receiving a transplant because I know what it really means.  Someone else died, and I benefitted from that.  There is so much focus on transplantation being a miracle, but I often wonder where the miracle was for the donor families.  Hearing one fellow recipient’s family joke about how they would never look at car accidents the same way made me feel indignant at the lack of respect being shown to their donor.

It inspires in me a strange desire to want to put safety wrap on people and tell them to wear their helmets and to stop doing stupid things like drinking and driving.  Even though those actions would most likely lower organ donation rates, I would feel more justified in feeling joy about receiving a transplant if I knew my organs came from people who died of old age.

The other reason I have trouble basking in the miracle is that my second transplant was not as ‘easy’ as the first.  With my new heart, I was suddenly facing a donor-inherited illness (Cytomegalovirus – CMV) that in my case also turned out to be resistant to the usual drugs.  Fighting CMV occupied a year of my life, and did lasting damage to my kidneys which may require me to have a third transplant.  For the first time I felt something about my transplants that was about as far away from happiness and thankfulness as you can get: resentment.

Is a miracle still a miracle if the beneficiary of said miracle feels resentment towards it?  Or does it mean I have become a soulless scavenger of organs, interested only in my own survival and ignorant to the grief of others involved in the process?

Because that’s my fear.  Advancing medical science is making transplants more common with better success rates.  In a society that values consumerism, where does that leave us?  Will we become cavalier about replacing organs, seeing it as just another medical treatment?  Have I come to view transplantation that way?

I wish I had a clear-cut answer.  I wish that I was either eternally grateful and happy, or someone who was only interested in self-preservation.  What bothers me is that I am a mix of joy, grief, resentment and thankfulness because I feel pressure to just make up my mind to be thankful and happy and forget everything else.  I seem to be incapable of doing that.

For all my confliction though, my favourite poet e.e. cummings sums it up best:

“here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart
i carry your heart(i carry it in my heart)”

e.e. cumming’s words carry literal and metaphorical meaning for me.  I carry someone else’s heart, and in my case someone else’s liver as well.  It is a truth to be marvelled at and wondered over, but living in a constant state of wonderment is impossible.

Instead, contemplating my two transplants is much like looking up at the stars on a clear night.  I see them and am awed by their beauty and mysteriousness, but I cannot begin to comprehend the forces that put them in place.

* Credit goes to Catherine Knutsson for the title.  I recently read her young adult novel “Shadows Cast by Stars” and the title took on a different meaning for me.

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