The Phoenix Zine

January 21, 2012
by Amy Mathers
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The Tolerator’s Manifesto

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.

January 14, 2012
by Amy Mathers
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Medical Terminology: The Biopsy

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.

January 7, 2012
by Amy Mathers
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Happy New Year

The year begins with a toast.  Granted, my glass is filled with Coca-Cola instead of wine, but the sentiment is the same.   I am surrounded by friends, my sister, and people I’ve only met this night.

I am physically present in this moment, but my mind is taking a trip down memory lane.  Last year at this time I was telling my (now ex) boyfriend that for the first time in my life, I wasn’t anticipating the new year with hope and excitement.  Instead, when peering into the murky depths of the future, I felt only a sense of dread.

My sense of dread was justified as 2011 turned out to be a very hard year.  I didn’t have a transplant, but I did endure four months of cytotoxic drugs.  I felt my body become weaker and weaker to the point where I had to admit I needed a walker for support.  I moved to the first floor of my parents’ house so I could respect the fact that my legs couldn’t do the stairs anymore.  I grieved the unexpected loss of a friendship I had valued greatly.  And my eyes were opened to the fact that medical situations I hadn’t even imagined having to endure were likely in my future.

But now it’s 2012 and I’m wondering what stance to take on the upcoming year.  What will the new year bring?  Will I be strong enough to handle the unknown?

Somehow, despite the fact that the year now behind me reinforced my beliefs about the uncertainty of life, I am oddly hopeful again.  I don’t know all that is coming this year and I have good reasons to be fearful, but I look at the people around me and I am not. 

My mind returns to the present moment as I realise that this is all I can handle right now.  At this moment, the future is far away and can’t hurt me.  At this moment, I am happy and hopeful.  I can’t control all the moments that are coming, but I can enjoy the moments of joy I find myself in.

The first night of 2012 ends after more Coca-Cola, Glee karaoke and a couple of chapters of a book that makes me laugh.  I fall asleep without difficulty and 2012 is off to a hopeful start.

December 8, 2011
by Amy Mathers
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Have Yourself a Merry Little Christmas

It’s Christmas time again and this season of joy is driving me nuts.

Today I went to what I consider to be my work Christmas party, which is actually the Christmas party for heart transplant recipients at TGH.  I put on a happy face, talked animatedly with my friends and ended up with three name tags instead of one when a fellow heart transplant recipient’s four and a half year-old daughter decided to use my name to practice her writing skills.  It was cute.

When it was over, however, and I was on my way home, I train-wrecked.

I’ve never been especially skilled at identifying my emotions in the moment, unless the emotions are anger and/or disgust which seem to be easily identifiable.  Instead, on many intense emotional occasions I find myself able to deal with things in a rational manner only to be a confused emotional train-wreck afterwards.

Going to a Christmas party sounds fun in theory, but going to the yearly Christmas party for heart transplant recipients is gut-wrenching.   Beneath the festive mood and lively conversation is an undertow of all the things we as transplant recipients have had to endure throughout the year: biopsies, drug changes, infections, and rejection.  But every year we go around the room and tell everyone our names and how long we’ve had our new hearts and there is little talk of the real life of a transplant recipient as we clap for the amount of time each of us has survived.

The thing is, while I observe this phenomenon and feel uncomfortable over the pressure I feel to be ever positive and thankful, I also perpetrate it.  When people asked how I was today, I said I was fine even though just before the party I signed a consent form for doctors to use the tissue from my upcoming kidney biopsy for research.

So when I couldn’t stop myself from crying on the way home, I was trying to figure out why.  I was anxious at the party, but generally I had a great time.  I like being able to see my friends in a social setting, and while seeing some of my doctors and support staff in a social setting is weird, it’s still a nice reprieve from the medicinalized world I’m used to.  I enjoy the comradery of it all, but somehow that comradery leaves me feeling more isolated than ever, especially when this year (as last year) I was the only one at the party who had had both a liver transplant and a heart transplant.

One thing I’ve never been good at is juggling opposing emotions.  While I am happy that I made it through another year and thankful to my new heart for making that a possibility, I also feel sad and scared about the consequences of having a heart transplant.  What ended up train-wrecking me was not the fact that I felt these conflicting emotions, but that I felt being conflicted had no place at the party.  After such events I often beat myself up because I feel I’m not dealing with things as well as I think others are.  I wonder what is wrong with me that I can’t just be happy about having a new heart and leave it at that.

But life is rarely that simple, and this Christmas season I need to remind myself that living with such conflict is okay.  It’s okay not to be happy when others want you to be.  It’s okay to be sad and scared because those are normal emotions everybody feels.  It’s okay to be grieving and celebrating simultaneously.  It’s okay not to have it all together all of the time, and it’s okay to let others know you don’t have it all together.

If I can remember those things than maybe I can give myself a break when it comes to holiday pressure to be joyous and jolly.  What I appreciate about feeling conflicting emotions is that they contrast with each other and make the moments of joy and happiness that much sweeter.

October 29, 2011
by Amy Mathers
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Sugar Monster

It’s the 29th of October and I feel like this month will never end.  Over the course of these 29 days I’ve had two ventilation/profusion (VQ) scans, two sets of  blood cultures (one contaminated, one not), a  glomerular filtration rate (GFR) scan, an echocardigram, an abdominal ultrasound, a heart biopsy, and a superfluous antibiotic IV.

The thing is, I’ve been feeling like crap.  Fatigue, nausea, mysterious pain, fever – all things that strike fear into the hearts of transplant doctors.  Is it rejection?  A pulmonary embolism?  Bile duct blockage?  Kidney problems?  Infection?  Whatever the cause, it must be routed out and treated.  The problem must be fixed.

Lately, as my mind fixates on the problems of my body, two songs have been playing in my head.  The first is Sara Bareilles’ “Hold My Heart,” and the second is Glee’s remake of the Coldplay classic: “Fix You.”  (I picked the YouTube version of “Fix You” from the show Glee because I love the  brief shot of the lit-up wheels on Artie’s wheelchair.)

As Lady Gaga writes in another famous song, “Baby, I was born this way.”  I’m pretty sure we’re writing about different things, but for me, it’s still true.  My body is a product of nature.  How it functions is the result of a couple of genetic mutations that have potentially been in both sides of my family for generations.  Some people get blue eyes.  I got Glycogen Storage Disease, Type 3a (GSD).

I tend to equate things that are a product of nature as being wholesome, good, and right – the way things should be.  My body is abnormal, but at one point it did work in its own way.  Others who have the same illness can usually adjust to their body’s pecularities through dietary changes.  Unfortunately for me, something in my genetic structure affected the severity of my GSD and made my body an uninhabitable sugar monster by the time I turned five.  Yes, my body was able to exist in nature, but only for a brief period without drastic medical intervention.

Now my body no longer exists in nature, it is a product of science.  Now my body is home to the heart and liver of two people I’ve never met.  Now I contain wires.  Now I take drugs.  Now I have built up scar tissue.  Now I push everyday to fight the nature I was born with because I know that ultimately it is my natural state that has the potential to kill me.  Now it is not my GSD that is so much the enemy, it is my body’s immune system.

At times it is difficult for me to realise that I did not cause this.  My illness is not the result of a lifestyle choice, or the natural aging process.  Before I was conscious of my own existence, before I had smiled or spoken, it was already there.  I couldn’t fix it then, and I can’t fix it now.

I can’t fix it.  The grief of that deceptively simple statement is overwhelming.  I didn’t ask for this, I didn’t choose it, and I can’t fix it.  And while tears are streaming down my face like in Coldplay’s song, my issue is not that this is an unfixable problem, it’s that I can’t handle the pressure I feel that I should be able to fix it myself or that I just need to find the person who can.

But when it comes to dealing with chronic illness, there is often no magic answer or person to make it all better.  Dealing with chronic illness means dealing with ongoing grief.  Grief over current or potential physical losses, missed opportunities due to illness – grief over how random and unfair having to deal with this crap sometimes seems.  I cry for all of those things and know they are not fixable problems.

In my darkest times, I lament my unfixable position and feel broken.  During such occasions, Bareilles’ song reminds me of what I’m seeking through my brokenness.  Not someone to fix me, but someone who is just able to sit with me in my grief.  Someone to hold my (metaphorical) heart and accept me as I am.

In the end, while some doctors view me as an unfixable problem and other people dealing with their own chronic illness compare their lives with mine and decide their lives are better, I am still human.  Maybe my body is now fodder for science fiction, but struggling daily with the see-saw of grief and hope is one of the most natural states of being alive.