Operation Exacerbation

Rule Number One that I hear myself telling people who are bummed out about their illness, whatever it is, is to remember, “there is more right with you than wrong with you.

And that’s true, right?  Think about it, by some miracle you are here on this earth, breathing, most likely able to walk around, enjoy food, listen to good music, pet your dog, watch Survivor…

Why is that?  Because most of the 100 trillion cells in the body, each of which are probably performing thousands of events per second, are actually doing their jobs perfectly well right now.  If not; well, you would not likely be reading this.

Now I’m not preaching here.  I am mostly writing this for my own edification, because I just learned that I am now infected with MRSA in my lungs.  I really can’t convey in words what happened in my consciousness when I learned of this last week.  Maybe you know the feeling that really bad news carries with it.  The sinking feeling in the pit of the stomach, the tight chest and throat, the heart racing and the blood draining from seemingly everywhere…  Sh_t!

Then the anger, and the self-pity arrive.  Sh_t (again)!  Why me, why now?  This is a REALLY bad time for this.  I’ve got plans, Universe!

And then, the tears.

So, now I’m officially a CF Pariah.  Gown, glove and mask everyone…here comes Julie.  Man, I’m pissed.  And of course, really what I am is scared.  What does this mean?  Is my CF going to get worse?  Will the freakin IV’s even work this time?

So, I allowed this to go on for a couple of hours.  Then, I was better.  Then, it came back with a full and serious vengeance over several days.  And now, finally, I’ve decided to respond instead of reacting.  Or at least…to try.

The first thing that came to my mind was to write the post I was going to write before the fateful telephone call.  It seemed to me that writing about having a “positive exacerbation” could only be credible if it were to be created during an exacerbation.

So, even though this is a slightly unusual (for me) situation, it is most certainly a “CF adverse event” and just as certainly would be best handled with a positive attitude.

Here are a few things I do to make my three weeks of IV’s…my “home vacation:”

1) First, since I can’t exercise strenuously, I don’t.  I legitimately and compassionately stop pushing myself.  A gentle walk every day that I feel like it is about as hard as I’ll push these days.  After the port goes in and the PICC comes out today, my arms will be free at last, free at last.  So as I feel stronger…I’m back to those kettlebells!  Have I told you about my favorite new exercise?  Something else to post about.

2) I have incredible friends who have been incredibly kind.  I will appreciate them every day, in some way.  By telling them what they mean to me, I will add positive energy to their world and mine.

3) Sometimes it takes a real blow to the illusion of stability to wake me up.  This has been a great one.  I will resolve to appreciate what is good in my life.  The best way I’ve done that in the past is to keep a gratitude journal, and vow to write in it every night three good things that happened that day.

4) I have a post that I have been writing in my head for weeks now about the growing importance of meditation in my life.  I have been trying to figure out how to stress this without sounding like a preacher…hence the silence about meditation.  But it has been SO key for me this last week, that I will write this post.  It will be the next one.  I will pour my soul into it, for both myself and for those two or three readers I have:-).

So if you like this plan, or if you have some suggestions, or if you’d like to share how you deal with your own “operation exacerbation,” please leave a comment!

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E: Envision The Opportunity

by on October 3, 2008
in cystic fibrosis, P90X

The following is a quote from experts in the field of “Appreciative Inquiry,” a technique used in coaching (as well as other endeavors) which draws on the best of the past to inspire the present and create a better future.

“We see what we look for and we miss much of
what we are not looking for even though it is
there…  Our experience of the world is heavily
influenced by where we place our attention.”
Stavros and Torres

How can we apply this to our quest of living well within the context of a chronic illness?

The challenge in writing about this topic is to not come off sounding like a rose-tinted fluff producer.  Believe me, I understand that a chronic disease brings with it significant struggle, frequent frustration, and unsettling uncertainty.  Sometimes, when someone tells me that I should “look for the positive” in a situation that seems unbearable, I get downright mad. “THERE IS NOTHING POSITIVE HERE,” I want to scream.  In fact, until the initial emotion is confronted and worked through, my visual field can include nothing positive about the situation.  I don’t believe I am alone regarding this.

So step one in looking for the “opportunity” in a health challenge must be confronting and understanding the grief, anger and fear that accompanies illness.  You can’t ignore or look past these valid emotions in order to get to the other side, where opportunity lies.

As I write this, my brother Tom lays in a hospice house in Omaha, Nebraska, where he will spend his last days and weeks before succumbing to cystic fibrosis.  I love my brother more than I can describe.  He has been a role model to me, an example of how a fighting, stubborn spirit can overcome lungs that have been failing him for over a decade.  He has been like the Eveready Bunny for over 10 years, refusing to stop and give up, despite pulmonary function numbers that would cause most people to roll over and die.  Instead, Tom has maintained a job, maintained friendships, and continued to amaze his healthcare team (and family) with his resiliency.

Now that my PICC is out, I am traveling to see Tom in a week, to say good-bye and to tell him how much I love him.  There are obviously a lot of emotions to work through here…I am very sad, and I am very afraid of what I will see when I walk into his room.  But there is absolutely no way of ceasing this opportunity to say good-bye without acknowledging and facing my own fear of looking at Death by CF. I have been letting this fear get in the way of getting close to Tom for years…just as I let it keep me from Kathy when she was ill.  It is the same fear that made me cover my ears and go to the far reaches of the house when I was a young child, and Tom or Kathy was doing a treatment and coughing their brains out.  I have been missing the opportunity of knowing my brother better, because I have let my own fear and sadness cover my heart. This has been a great example of how to not find opportunity in a bad situation…until now.

Fortunately, I see now that the reward of knowing and loving my brother will come with facing this fear, not avoiding it.

Similarly, the reward and opportunity found in any health challenge can only come after living with and through the emotion that accompanies it.

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