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Fighting for my life: The largest battle I ever won

Posted by on Aug 17, 2010 in Blog, health, theory | No Comments

I’ve been doing a lot of soul searching recently, and coding.  Trying to remember why I decided to learn how to program.  It was always for journalism.  Never transitioning out of the profession, only transitioning within it, and helping it to transition.

I’ve been paying rapt attention to the journey of designer/journalist Chris Courtney.  He’s fighting a battle bigger than the ones we fight against agencies refusing to hand over document, journalists stuck in an old mindset, people too bored by media to become informed.  He’s fighting cancer.

We don’t know each other, Chris, but I’ve followed your work, and I’ve been meaning to introduce myself.  I can’t help but feel connected to you, though.  Reading your thoughts reminds me of my own similar journey. And having spent the day arguing with Javascript functions, and wanting to punch them in their metaphorical faces, it’s easy to forget there was a time when I had much bigger issues.  Life-threatening illnesses have a way of clarifying things.

Reading Chris’ thoughts reminds me of a time in my own life I don’t talk much about, but I don’t avoid it either.  Back in 2002, I was diagnosed with IgA Nephropathy, an illness that caused my immune system to attack my kidneys as if they were foreign, resulting in kidney failure, and ultimately a transplant in 2006, which I received from my dear aunt Karen Kwan.  More background on this in a Medill article I wrote when I returned to UIC as a journalist: This time, it’s not my kidney

For too many days to count, it was the focus of my life.  Tends to happen when you don’t have the energy to move, or even write.  And you wouldn’t know it now, other than the fact that the experience forces me to examine each day and ask myself what I did with the gift of life.

I suppose this is a letter to Chris more than anything. I’m heartened to see your positive attitude.  I believe that’s what enables people to get through situations like this.  Also key — a great network of support from friends and family.  Don’t be afraid to come to them for anything you might need, help making a meal, advice, or what I found most helpful — a friendly ear ready to listen.

I applauded out loud when I read your dismissal of flowery get-well cards that could just as easily be expressing thoughts of sympathy.  I mean, come on, I tell my editor when I don’t agree with him, I argue with sources all the time.  And the stories my parents can tell you about when I was a teenager, okay, yesterday.  So, kidney failure, cancer, whatever you are.  You think you can scare me?  Hit me with your best shot.

These sorts of illnesses have a way of giving you life clarity.  Chris explains that the only thing > than cancer is death.  But “My team losing < Cancer.”  Absolutely true. I find this to be a double-edged sword.  I value everything in life a lot more.  I care a little bit, no, a lot, less that your boyfriend broke up with you.  Because, you see, I could respond to it all saying “Try living with kidney failure.  Do you like how you have the strength to stand? That’s not a guarantee.”  Looking at life that way gets quite tiring, though.  But ultimately it’s another feather, and a big one, in your cap of life experience.

And Chris, I couldn’t agree with you more about being too young for all this. Take it from the girl who went to a session on post-kidney-failure options at Northwestern Memorial and passed out after looking at all the “old people.”  Only time I passed out in my life, by the way.  Oh, except for when I was five, and that tall guy kicked the soccer ball into my head.  </michellesathleticcareer>  Point is, you look around.  And you’re not supposed to be in that hospital, you’re not supposed to be bailing on your friends cause you’re tired.  But that’s what life’s thrown at you.  You discover your true friends, discover what’s important.  And by the way, when are you old enough to get sick?  I have some relatives in their 80s who would tell you they’re too young to get sick.  And that attitude, I argue, is part of what keeps them out of the hospital.

Yeah, hospitals suck.  What do you mean I can’t take my phone into the operating room?  What’s your wireless access code?  My story: the nurses eventually told me I could use the Internet on the nurses’ station computer if I did a lap around the floor.  The 180 seconds they alloted me was less than I use in a 10-minute window on a routine basis.  When I was well enough that the tech situation really bugged me, it was time to go home.  And in the meantime, I grew to appreciate my friends and family more than ever.  And did a lot of thinking and contemplating. We don’t make time for that in our workaday lives.  When you’re forced to slow down, things seem a bit different.

As a journalist, the process is fascinating.  You have your own window onto the beat of your medical condition.  I can tell you all about kidneys now.  And I follow future developments in the field like it’s my job.  Because someday my transplanted kidney will fail.  The medication we take to protect a transplant also contains ingredients that destroy kidneys over time.  And this time, I probably won’t get a donation without going on dialysis.  But that’s no reason to give up.  Only a reason to press on in the present!

Don’t get me wrong, dealing with this sort of thing is all horribly unpleasant, unbearable at times.  But your support system and your optimism will aid you in giving your nemesis your best shot.  And that’s all you can ask of yourself.

I would never say everything’s going to be okay, to anyone going through this sort of thing.  I hated when people told me that.  Show me the data on that one, how can you tell the future?  But I do believe you’ve got a better shot if you kick, scream and fight against it with all your might.  That’s why journalists are so well prepared to fight these sort of battles.  It’s what we do every day.

And as for my life now? Well, I’m behind you 1000 percent.  And I’ll be watching, Chris.  And thinking of you.  Take cancer down.  If you happen to see the UIC chief of surgery, Enrico Benedetti, say hello to my dear friend, who was head of the transplant team when I was there in 2006.  And if you need anything at all, you know where to find me.  But I won’t be sending any flowery cards, electronic, handwritten or otherwise.

And when you’re not too busy fighting the fight, and relishing the extra time with your family and friends, we need you here in the journo world.  After all, cancer or no cancer, kidney failure or no kidney failure, there’s work to be done.

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