The Phoenix Zine

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.

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.

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.

When it comes to the language of illness, I hate the word accept.

The concepts behind the word bother me.  If I accept my illness, then by definition I approve of it and consent to how it affects my life situation.  I am implying that I see my illness as suitable, and am willing to accommodate it (dictionary.com).

What bothers me most is that there is also some inference behind it.  If I can accept my illness then somehow it will open up the path to understanding and enlightenment and my experience of illness will be much easier.

This, in my opinion, is ridiculous.  It offends every fibre of my body with its arrogance.  Telling others that they need to just accept being ill feels like a slap in the face from people who do not realise what a psychological and physical challenge being ill is.

To that end:

I do not accept that I have to be sick for the rest of my life because of a couple of random genetic mutations.

I do not accept that the life-saving treatments I’ve required over the years have also endangered my life on several occasions.

I do not accept that the state of my physical body is going to drastically limit the number of years I am alive.

And I do not accept that accepting my situation is going to make it all better.

Seeing as I am unwilling to accept my illness the most obvious alternative is denial.

I could pretend I am not ill.  I could refuse to take my medications.  I could take a passive role in my doctor appointments and wait to be pestered to have bloodwork and other tests by my transplant co-ordinators.  I could actively ignore the limitations of my body by pushing myself physically on a constant basis and by doing so, risk making things worse.

I admit, denial is appealling and I have used it before.  An invisible illness makes denial even easier because the outside world does not know you are dealing with illness.  Unfortunately, denial only goes so far.

When I was put on the heart transplant list, I could no longer deny that I was in heart failure.  Using a walker means I can no longer deny that my illness has led to my requiring assistance to walk.

On a mental level, I can also try to deny the fear and anxiety I feel about my illness, pushing it down until I am able to pretend that things are okay.  In my experience denying feelings means one of two things: either they come back up when I am trying to relax and my guard is down or I cannot lower my guard to enjoy life because of the powerful feelings that are hiding behind it.

Thus I am left with a situation that is both unacceptable and undeniable. 

This is my body, and although I am not pleased with its condition what I want more than anything is to stay here on Earth with my family and friends as long as possible.  If my body goes down, I go down.

So I will tolerate my illness-ridden body.  I will put up with its limitations and do my best to live within them.  I will permit the bloodwork, the biopsies, and the drugs it takes to keep my body functioning.  I will work with my medical team and seek their advice.  I will deal with fear and anxiety of being in this body because I want to stay alive.

Among those who personally deal with chronic or life-threatening illness there is a saying, “It could be worse, I could be dead.”

Although I am able to tolerate a lot of things, I’d like a higher standard of living than that.  Everything is not okay simply because I am not dead.  The truth is, there are things in life that are worse than death.

A biopsy is the removal of bodily tissue to diagnosis various medical conditions.

Some biopsies are more invasive than others.  Over the course of my life I’ve had samples of my bone marrow, heart, liver, muscles and uterus removed from my body for further study.

My first experience with biopsies was when I was six months old.  It was my only “open” liver biopsy, meaning instead of inserting a needle to retrieve a sample of my liver, the doctors made an incision and removed a more sizable piece.

That biopsy isn’t present in my conscious memory, but the scar from the procedure remains on my lower abdomen.  My next biopsy was a bone marrow aspiration when I was two that I also do not remember.

When I was old enough to remember my biopsies, I began running into trouble.

Fragments of memory exist in my mind.  A small procedure room at the Hospital for Sick Children (Sick Kids), lying on my side and having a doctor approach me with a large needle made even larger by my childish point of view I am sure.  Pain.  Fear.  Restraint.  Many, many tears and seemingly useless cries on my part.  A strong antiseptic smell.

I developed a phobia of liver biopsies pretty quickly and, when I was old enough, insisted on sedation.  I soon learned that all types of sedation are not equal as I remember being aware of my next liver biopsy in a fuzzy, out-of-body manner.

The feeling of watching my biopsy without being able to do anything about it contributed to my existing fears.  I learned my lesson well, and for the following liver biopsy I made sure the sedation I received gave me what I really wanted: unconsciousness.

Unfortunately, during my unconsciousness the doctor performing the liver biopsy bruised my liver and ignored me when I said things didn’t feel right after it was over, resulting in a late night emergency room visit to deal with the worst pain I’d ever experienced in my life up till then.

By the time I realised how to successfully get through a liver biopsy with minimal psychological damage I had switched over to Sick Kids’ adult counterpart Toronto General Hospital (TGH).

The next liver biopsy I had, my first in an adult hospital, was in a shared procedure room.  I hated my liver doctor at the time and that intense dislike increased when he insisted I did not need any kind of sedation and proceeded to do my liver biopsy with another patient in the room.

I had talked briefly to the other patient beforehand and although I was younger I had more experience in the field of liver biopsies and felt pressure to set a good example.  I didn’t protest or cry, even when my “esteemed” doctor missed his mark and had to repeat the needle aspiration to get a proper sample.

My most recent liver biopsy was four years ago now, and the best one I’ve had by far.  Privacy, mild sedation, no complications and excellent results.

When it came time for my first heart biopsy after my heart transplant I decided I wasn’t going to be afraid anymore.  I was offered a mild sedative but I refused it, believing that I could handle the procedure with just local anesthetic.  And I was right.  Of course, my anxiety was greatly eased by the fact that my doctor engaged me in conversation about books while he worked.  I’d never had that happen before.

Since then I’ve lost count of how many heart biopsies I’ve had.  With each successive zero rejection level, the time between biopsies increases, but in twenty-six months I’ve never gone longer than three months between biopsies.

After being introduced to muscle and uterine biopsies in 2010, I would say uterine biopsies are most painful and invasive.  Muscle biopsies are the least invasive, less painful than a uterine biopsy and take the least amount of time.  Heart biopsies are the least painful if done right, and liver biopsies fall somewhere in the middle.  Thanks to the five hour recovery time, liver biopsies take the longest.  In my experience, sedation is most often offered for liver biopsies, then heart biopsies, and never for muscle or uterine biopsies.

On Monday, my kidneys will join the prestigious list of internal bodily tissues that exist outside my body.  Since my childhood days I’ve come a lot way in dealing with biopsies, but the anxiety I’ve been feeling about it over the last few weeks has been intense.

Because there is more to biopsies than pain and invasiveness.  Biopsies can cause an array of complications.  They are used only to diagnose serious ailments that can’t otherwise be determined by bloodwork or other less invasive tests.

I’ve learned how to deal with pain and I’ve recognised that the doctor doing the procedure can raise or lower my anxiety level.  However, I still have to deal with other formidable opponents: fear of the unknown, vulnerability and grief.

There is nothing like being on a table in a flimsy hospital gown, exposing parts of your body normally covered by layers of clothing to antiseptic, needles and the hands of a stranger.  I hate the feelings of  powerlessness and fear biopsies provoke in me, knowing my future health is going to be determined by what is being removed from my body.

When it’s a biopsy for my heart or liver, it is different, because I know the doctors are looking for rejection and can handle it if it occurs.  The muscle biopsy I had was to explore the extent of my glycogen storage.  Uterine biopsies are necessary monitoring for the drugs I’m on.

But my kidneys are still my original kidneys so I know it’s not rejection.  Glycogen Storage Disease type 3a is not supposed to affect the kidneys.  It’s possible my kidneys are damaged by the drugs I’ve had to take over the years.  So right now, my questions exist without answers.  What is causing my kidneys so much grief?  What will the treatment be?

While biopsies are stressful for both my mind and body, they serve a purpose.  I am seeking answers that a kidney biopsy should provide, even if I don’t like what they are.