The Phoenix Zine

Sugar Monster

| 1 Comment

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.

One Comment

  1. Hey Amy,
    I feel bad that you’ve hit a rough patch. I am, however, glad that you find comfort in the music that is yours (I guess I feel that if you love it you own it). I am also glad that you communicate so well what it means to be human, and in the process help us all to understand a little more of that condition (being human).
    Hang in there….
    Fight the good fight…
    and please keep sharing.

Leave a Reply