August 20, 2013


I believe it is the Buddhists that have the principle that suffering is caused by want.  And I have worked hard to shrink the part of my personality that wants things for purely selfish reasons.  I'm not prone to be jealous of other people, or particularly avaristic or covetous.  I will want things for other people, especially if I can be part of the mechanism that makes that happen.  I have clear throughlines at work, for instance, where I desire a certain outcome and will work hard to get that.  But that sort of want is altruistic, as it enhances the greater good.

The more selfish wants of this world quickly get wearisome.  I don't really want for much that I actually need, and usually don't "need" what I think I want.  If I post a picture on Facebook of a car I admire, for instance, I may have wanted it - for about a second.  But the realities of ownership of that vehicle usually far outweigh the benefits of having it.  So I am happy to just admire the craftsmanship and beauty in front of me.  (I should be plainspoken here and say, too, that this may be how I approach relationships....and maybe that needs revision.  Can I ever find myself a good partner without, at some point, coveting?)

Recently, I spotted this beautiful 1970 Cadillac DeVille Classic, wonderfully restored, near my house.  Yeah, I want!  I want to look at it for a long time; I want to drive it.  But I don't want to HAVE it.

However, there are a couple things lately that have really  pushed my WANT button and pushed it hard enough to be called actual jealousy. 

One of those things is this:

No, not the pink bag.  A FB friend posted this.  She says that after a meeting where another patient picked up her oxygen by mistake, she decided to bling out her equipment so it couldn't be mistaken for someone else's.  Great idea!  Then I noticed:  it's a Helios system.  And the green-eyed monster took control!

Why does she get a Helios system and I can't?  If they're allowed anywhere, why not everywhere?  If one company does it, why not all?  If one BRANCH of a company does it, why not all of them?  I am struggling daily with refilling these heavy tanks and could be much happier commuting with a Helios liquid oxygen system, I assure you!


This is one of the things about this stage of CF that does suck.  Working with oxygen companies is a crapshoot at best.  You'd think that life-support-type equipment (and the patients needing it) would be handled a touch more professionally and supportively, especially if a particular piece of equipment allows a patient to resume the functions of a normal life.  But no....dealing with oxygen companies is more akin dealing with furniture delivery people. 

It doesn't help that I read this shortly after my PD1000 regulator went on the fritz and left without sufficient oxygen supply while an hour (and much walking and stairs) away from home. 

The other thing that has touched off some real jealousy and which prompted this blog post, is that for the last five days in a row, I've seen morning or evening notices on FB that yet another FB acquaintance (or member of one of the transplant groups) has been transplanted.  It's like the nation's transplant teams, as a whole, are settin' 'em up and knockin' 'em down like bowling pins.... and I'm feeling like I'm a bowling pin that's fallen behind some piece of machinery and forgotten.  Some of these patients were in far worse condition than I, and I am not jealous of them.  Other patients - other areas of the country - they were in better condition.  Or same condition but waited a matter of weeks, not months or years.  I don't know how the patients who have waited for YEARS and still haven't been called have managed to stay sane, because this is definitely gnawing at me. 

Obviously, the common thread among these things -- the fine cars, the Helios, the operation -- is that these items are scarce.  Scarcity seems to drive want. (Duh.)  But my jealousy only boils up when I'm looking at a scarce item that I could have conceivably had (or will get), but is consistently denied to me for little to no good reason.

I wish all these recently-transplanted patients well, and am truly thankful transplants can even be done. Yet I'll continue to struggle to keep the green-eyed monster at bay.  I'm only human, after all.

August 4, 2013

The Relativity of Cystic Fibrosis

Remember in high school watching the clock on the wall and it seemed like time absolutely stood still between 3:14 and 3:15?  I do.  But do you really want time to stand still?  Trying waiting for the last 10% of an IV to infuse when you're already 90 minutes late for bed and have to be up early in the morning.  That's time travel! Albert Einstein could not have described relativity better.

There are a few things that having cystic fibrosis makes just a liiiiiiitle bit different than most people's lives.  I'm not saying that makes us special, just that our experiences will never 100% jive with normal people's experiences.  Or, for that matter, the experiences of people with other diseases, especially ones acquired later in life.  I'd like to talk about things that come out, well, a slightly different shade of life - as if those of us with CF are moving at relativistic speeds and have red-shifted from your point of view (as you have red-shifted from our point of view).  And this difference gets more pronounced the farther down the rabbit hole we go; the farther our disease takes us.  A key difference is the tenor of our relationships.

Wednesday, a friend of mine whom I've known for more than a year, attended many transplant meetings with, and feel very close to -- yet have never physically touched -- finally, finally got her transplant.  You know, I really thought Emily was doing OK there for a while, but then she took a sudden turn for the worse, ending up hospitalized on high flow oxygen, then ECMO... I began to worry.  ECMO is a real sign that your lungs are done.  Were it not for this mechanical intervention, she'd have died.  And it kept her alive...for about two weeks, she waited in this state and finally she got her transplant this last Wednesday night slash Thursday morning!

I am incredibly relieved and thankful!  It may be the prednisone in my system, but I broke down in tears of joy when I read the notice on her Wall.  In these cases, it's always possible that lungs won't be found in time.  But there was a time when I told her I was sure that though she came to the transplant program after me and was listed after me, she'd get her transplant before me.  I also told her that I was sure she'd get a transplant because girls like her ALWAYS get a transplant, but that I am not so sure about myself.  (Ah, but those doubts are for another blog post.)

So...why am I so invested in Emily's progress?  Why is her journey, the travails of a girl I actually actually hardly know, so riveting to me?  It's because, I think, those of us with CF and particularly those of us who have reached end-stage CF, feel close to one another in a way similar to what soldiers describe after surviving harrowing battles together.  In very real, very concrete ways, we are more brothers and sisters to each other than our biological families.  It's true!  My brother and my sisters will never understand what I'm going through or what I'll soon be going through.  But Emily can and does.  And I understand her struggles.  Same goes for Piper and Jerry and James and Kenna and Megan and dozens of others.  We know precisely -- and in minute, excruciating detail -- what each other is going through.  And for the few parts of their journeys I haven't already experienced, I am incredibly thankful my brothers and sisters are slightly ahead of me on their journeys, so as to shine a light on a very dark path, as I strive to shine a light on the path I've already traveled.

This, you see, is one of those relativistic differences.  How many people have such an extended family?  That when you gripe about coughing up green mucous with red streaks in it, that there's a chorus of "yep, been there done that"?  Or when you have a question about the best way to keep from getting tangled up in your oxygen tubing while sleeping, that there's a half dozen good suggestions?  Or grumble about having spent half your morning on the toilet attempting to kill every living thing in the house...  Well, I honestly don't think most people can experience this.  There's also the fact we've lived with this our entire lives.  OUR ENTIRE LIVES.  By contrast, there's damn few other people who have life-impacting conditions since birth.  Most people's problems - whatever they are - came on with age, with injury, with having done something stupid, or stupidly having failed to do something.  (Let's face it: as a race, most of our problems are the result of putting things of too little quality and too high quantity into our various orifices.  I am sometimes....not as sympathetic as I could be towards the problems brought on by excess, as opposed to the problems brought on by genetics.)

Having CF is also somewhat like being a photon in a laser beam.  We are not only on the same wavelength, we are on the same vector.  And those who aren't part of the laser beam, can't even SEE the laser beam.  (CF is often an invisible disease to others, but that's for yet another blog post.)

So if you find me jumping around in ecstasy over the news that my friend Emily is off the vent, or her chest tubes are out, or she's finally gone home - don't think me lunatic or overly attached.  Just realize that one of my sisters has had her life spared and I'm not only happy for her, but I'm happy for all of us with this miserable disease.  Her progress becomes the progress of all of us; her success, our success.  Her hope fulfilled, the expectant hope of us all.