The Phoenix Zine

July 10, 2012
by Amy Mathers
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Shadows Cast by Stars

“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.

April 25, 2012
by Amy Mathers
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Some Organs That I Used to Know

Right now, I am obsessed with Goyte’s “Somebody That I Used to Know.” First I heard it on Glee as an argument between two brothers and then Goyte turned out to be the musical guest on Saturday Night Live (SNL) that week.  After Goyte and Kimbra performed, Andy Samberg and Taran Killam did a SNL sketch spoofing Goyte’s music video so I looked up the real music video on YouTube.  (Watch the unique music video here and the spoof here under Digital Short: Goyte Backstage.)

The song is about a seemingly amicable break-up that results in the ex-girlfriend cutting off all contact with her ex-boyfriend.  Like they were never together at all.  The ex-boyfriend, lamenting this turn of events, is singing the song with some input from his ex-girlfriend.  The music video features Goyte standing naked in front of a blank wall that gradually becomes a painting that includes him.  When Kimbra enters the video she is already part of the painting, but as the song progresses her colours are removed and she is able to leave the painting.

It is National Organ and Tissue Donor Awareness Week (April 22 to 28) here in Canada, and that along with reading the articles about Hélène Campbell, recent double lung transplant recipient, have conspired to get me thinking more about my two transplants.

I am obviously a big supporter of organ donation since it has saved my life twice.  Lately my brain has been approaching transplantation from a different angle.

Rhythm starts, then xylophone music.  Open on a blank wall, camera pans up to find a heart and a liver hanging on it inexplicably, in an anatomically correct fashion.  Both have mouths and start to sing: “Now and then I think of when we were together…”  The organs seem to sway a bit in time to the music, and as they reach the end of the first verse a drawing starts appearing around them.  The lines start at the bottom of the wall and stretch upwards, revealing a human silhouette.

As the organs continue with the second verse (“You can get addicted to a certain kind of sadness…”), the silhouette gets filled in with drawings of the other organs so when they reach the part about still being friends, the heart and liver appear as if they are part of a human again.  You feel the hurt in their voices as they reach the chorus, singing the following words with passion:

“But you didn’t have to cut me off.

Make out like it never happened and that we were nothing.

And I don’t even need your love,

But you treat me like a stranger and I feel so rough.

No you didn’t have to stoop so low.

Have your friends collect your records and then change your number

I guess that I don’t need that though

Now you’re just somebody that I used to know.”

Putting improbability aside, a woman appears beside the silhouette.  Her chest and belly are open but there are no organs inside her.  Without lungs she is still able to sing: “Now and then I think of all the times you’ve screwed me over…”

She continues to harmonize after she finishes her verse as the organs sing the chorus again.  As they sing, the painted organs start disappearing around them, appearing instead in the woman’s body.  This continues until only the heart and liver are left, and the human silhouette has disappeared as well.  The skin flaps of woman’s chest cavity close and she is stitched up by a surgical needle and thread that appear from nowhere.  Once sewn up, she leaves the two organs hanging on the wall as the music fades out and the song ends.

So it is graphic and gross, but that is how it has been playing in my head.  In our focus on the joy of transplantation, the new life and second chances, we do not often think about the organs that have been discarded.

After I had been placed on the heart transplant list and decided to send my old heart to Duke University for medical research, I had a panic attack.  Through the tears and hyperventilating, I realised the gist of it was that I felt like I was betraying my heart by sending it away.

My heart had done right by me for 26 years, even though it was slower than the other hearts because it had to deal with restrictive cardiomyopathy.  Maybe it was not as efficient as the other hearts, but I always felt it tried its best.  And here I was, not only having it removed from my body but shipped off to another country on its own, to be subjected to medical testing for the rest of its existence.

Likewise, my old liver is supposedly in a freezer somewhere in The Hospital for Sick Children.  Perhaps after 24 years it is not still there, because if they kept all the organs they removed you would think they would run out of storage space.  Still, I find it difficult to reconcile the fact that my real liver and heart exist outside my body in different locations.  We treat it like it is nothing, like organs are easily removed and replaced, but I cannot help missing my original liver and heart sometimes.

I love Kimbra’s part in the song because it could be me singing, “Now and then I think of all the times you screwed me over, part of me believing it was always something that I’d done.”

My organs and I were part of a love/hate relationship.  I loved them but things started to turn sour when they began to fail on me.  I often wondered later if there was something I had done wrong to cause them to fail.  Had they not been cut from my body I would have died, but as with almost any break-up, the sudden separation is painful.

Sadly, my liver and heart do share similarities with an old ex-boyfriend cast aside.  Although sometimes I Google them and read medical articles about the research they have inspired, we are now strangers and have no direct contact.

Inspite of everything, I do not see them as just some organs that I used to know, but as an important part of me that I still feel grief over losing.

February 14, 2012
by Amy Mathers
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Commemorating Valentines Day

Twenty-four years ago today I woke up in a hospital bed at the Hospital for Sick Children no longer intact.  During the wee hours of that Valentines Day morning back in 1988, I received a new, healthy liver in exchange for my old, diseased one.  In some ways I went into that surgery as one person and came out as two.

My life changed dramatically.  No more bouts of vomiting copious amounts of bright red blood.  No grossly enlarged liver throwing off my balance.  No more kangaroo pump feedings at night or battles to send that hated tube slithering up my nose and down the back of my throat to my stomach.  No shadow of death hanging over me and haunting my family on a daily basis.

I finally started elementary school.  I lived to see my sixth birthday.  And I have since celebrated twenty-four Valentines Days surrounded by the love and joy of my family.

Unfortunately, my transplant and life were only possible because death visited another family.  A family who did not have a sick child and was not expecting death to come for them.

As a result I hold within me great joy and great sorrow.  I have had twenty-four years to wonder why I got to live and my donor did not when I was sick and he was healthy until an accident occurred.  I still do not have a satisfactory answer because I do not think there is one.

Words are not enough to describe the thankfulness I feel toward my donor and his family for their gift of life and love.  I try and try to explain it, how much my new liver has changed my life, to write some semblance of a thank-you letter to my donor family, but I always come up frustrated by a lack of skill and a profound sense of survivor guilt.

Still, I believe that though my donor is dead, a part of him lives in me.  (Literally and metaphorically.)  I am living my life for me, but also for him because he gave me what he did not have: the chance to grow up.  In some ways I feel like a piece of amber preserving a mosquito although I know I am preserving something far more precious.

It is Valentines Day, and usually this day is about professing romantic love through the use of symbolic hearts.  For me though, the greatest symbol of love will always be the liver.

February 4, 2012
by Amy Mathers
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Medical Terminology: Professional Sick Person

Lately, I have been finding Facebook to be more of a curse than a blessing.  People I would have had no contact with after elementary and high school are suddenly at my fingertips, pictures of their lives spread out before me.  Trips taken, romances had, marriages made, and children born.  Not necessarily all in that order.

June marks the tenth anniversary of my high school graduation and Facebook is making me painfully aware of all that I have not accomplished in that decade: autonomy, marriage and procreation.

Imagining a high school reunion makes me sweat as I am gripped with jealousy.  I want to be someone who has achieved what I consider to be the ‘normal’ accomplishments in life but I am not.  What would people think about my lack of a degree?  How would I justify the fact that I don’t hold a 9 am to 5 pm, full-time job?

What have I achieved since high school and how do I convey that to people in way that does not make me seem like a slacker, complainer or a pitiable creature?

It is time to admit what I have been up to all these years – I am a Professional Sick Person (PSP).  This is a position I must be good at because I keep getting promoted to new illnesses.

You may wonder, how does one become a PSP?  While others stumble upon it later in life, in my case I started out as a Sick Child (SC) and did so well it was difficult not to parlay it into a professional career.  Really, after having transplants for two different organs there was nowhere to go but pro.

Being a PSP is a full-time job and I am the ultimate workaholic because I take my work with me everywhere I go.  The pay sucks, and while being a SC had perks like meeting celebrities, being on television and getting gifts, being a PSP does not garner the same attention.

My job description includes interfacing with several departments, tolerating physical pain, working in the face of extreme fatigue and allowing pieces of my organs to travel around the world.  Job skills I have honed over the years include patience, flexibility and creativity.

As a SC, I remember instinctively knowing that being sick was not something to be envied.  It was not ‘normal.’  No one actually strives to be a PSP when they grow up.

But since the only way out of me being a PSP is a time machine and some serious genetic re-sequencing, I am not holding my breath.  You could say being a PSP was something I was born to do.

The catch phrase for The Phoenix Pages my sister and I developed is “Manage Your Illness, Live Your Life.”  The idea we’re promoting behind it is that a person is more than his or her illness.  There is so much more to me than the illnesses I have endured, but I still think what I have been through deserves to be recognised, hopefully with respect instead of pity. 

I am a daughter, a sister, a friend, a granddaughter, a cousin, a niece, and an aunt.  I have written a book and I write my own blog.  I volunteer my time screening books for a reading program for high school students.  I have co-developed and co-taught a college course called “Assisting Families Dealing With Chronic Illness.”  Those are my accomplishments.  I am not a wife, a mother or a university graduate.  Instead, I am a Professional Sick Person with two transplants to my name, and that is an accomplishment too.

Even if I haven’t achieved the same things as my classmates during these past ten years, at least I can say that none of them have achieved what I have.

January 28, 2012
by Amy Mathers
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The Sanctity of Organ Transplantation

In life, there exist things author Salman Rushdie would describe as “Processes Too Complicated To Explain (P2C2E).”

Organ transplantation is one of those mysterious processes.  Besides being a medically advanced field that requires several years of study, it is also a field that has moral and philosophical implications.

Human beings are not simply puzzles with interchangeable pieces.  There is something profound and mystical about taking an organ from a dead person and using it to restore life in a fellow human being.  It is about having the ability to feel connectedness and hope during a situation full of despair.

It is when the human connection is lost in organ transplantation that we as a species lose our moral compass.

Case in point: 2010’s Inhale starring Dermot Mulroney and Diane Kruger.  Paul and Diane are living a parent’s worst nightmare.  Their daughter Chloe is terminally ill and needs a lung transplant to survive.  When a match for Chloe is found but the lungs are directed to someone sicker than she is, Chloe’s doctor tells Paul and Diane that people with money have more options for organs than just the standard Universal Organ Sharing (UOS) transplant waiting list in America.

Further investigation on Paul’s part reveals that yes, people with money can get organs in Mexico for a price.  Not only is there a hefty monetary fee, the cost is also human as street children who are blood and tissue matches are killed for their organs to fill the demand from wealthy Americans.

In the end (spoiler alert), Paul and Diane are divided as Diane believes her daughter’s life is worth more than some street kid’s life in Mexico whereas Paul believes the two lives are equal.  Chloe dies waiting for lungs, and Paul and Diane’s marriage is clearly over as a result.

Once upon a time, all organ donations came from deceased donors.  Even though this is no longer the case it does not mean people should be killed to donate their organs to people who can afford it.  Paul takes the moral high ground and his daughter dies, because he recognises that the street kid in Mexico has just as much right to live as his daughter.

Living organ donation is not as clear cut and is getting more attention from the media at large.

Season eleven of Degrassi: The Next Generation featured their first transplant storyline.  Overachiever Holly J. Sinclair feels sick for a while but dismisses it as a cold that will not quit.  Imagine her surprise when her cold turns out to be full-blown kidney failure.  Holly J. begins dialysis immediately, still managing to keep up with her school schedule and homework.  Her kidney failure progresses, and the doctors tell her the only option is a kidney transplant.

Holly J.’s family gets tested for kidney donation but no one is a match because (Surprise!) it turns out Holly J. was adopted and her adoptive parents never told her.  So Holly J. tracks down her birth mom who is a match and will donate her kidney, if Holly J. will pay her $20,000.

Just so we’re clear, Degrassi: The Next Generation is a Canadian show and the purchase of organs is illegal in Canada.  Holly J. is appalled and does not have the money but her rich friend Fiona Coyne does and contrives a way to get the $20,000 to Holly J.’s birth mom in a ‘legal’ (I use that term very loosely) fashion.  Holly J. gets her kidney in a laughable episode where she misses her high school prom and then everything is peachy.

In a Harry’s Law episode entitled “New Kidney on the Block,” Jimmy Cormack comes to lawyer Harriet Korn with a special request: he wants her to help him change the law against being able to purchase organs.  Jimmy has a donor all lined up, but the donor is out of work and is looking for money to fund his kids’ college education.

The judge sympathizes with Jimmy’s plight – he’s 21 years-old and he’s going to die from acute kidney failure – but ultimately she rules against changing the law.   The implications are too wide-spread.  Should rich people be able to buy their way into new organs?  What will that mean for people who are at an economic disadvantage?

The most recent addition is “Toronto man who bought kidney abroad is key witness in transplant sale trial in Kosovo,” a newspaper article featured in The Toronto Star on January 22, 2012.  Raul Fain bought his kidney in an act of transplant tourism overseas for $127,000.  Fain declined to be interviewed for the article.

As a child, I grew up knowing that my life was the result of another child’s death.  It took me a long time to figure out that even though I lived and he died, I did not cause his death or even wish for it.

All I could do was marvel in awe at the wondrous gift I had been given.  A family, overcome with grief at the sudden, premature death of their little boy saw past their own sorrow to the sorrow of my family.  They recognised that though their own child was lost, his death could be used to spare other families from losing their children as well.

There was no monetary compensation; they did not have to agree to organ donation.  But their decision to help some family they did not even know represents the best qualities of humanity: our ability to empathize and our generosity.

Their decision gave me the tremendous gift of a childhood and allowed me to grow into adulthood.  And throughout all those years I have carried their son with me in a way I will never fully understand.

I do not know anything about the donor of my heart – not his or her age or sex, whether he or she had any children of his or her own – but I also carry him or her with me.  I have the same respect and awe for him or her that I do for the donor of my liver and his family.

Would being the recipient of a living organ donation make the connection different?  I cannot answer that question based on personal experience.  Maybe while it is morally wrong to kill people for organ harvesting, it is right to compensate people who are willing to be living donors.

But I worry that something profound is lost when money enters into the equation.  Suddenly the incredible gift of life is not a gift anymore, it is a commodity that will be more easily aquireable by the wealthy.

I believe that living or dead, human beings have a responsibility toward promoting each other’s well-being.  Organ donation is an excellent example of this and should be practiced with altruism and empathy.

We live in a time when immediacy and health are highly valued.  In such an environment it is difficult to argue in favour of government-approved transplant waiting lists that have the potential to stretch out for years if other options are available.

As a species, our growing scientific knowledge has led us to encounter many P2C2E.  I hope that we also never lose our willingness to look beyond the surface and truly consider the moral consequences of those processes.