Say When

One of the things that I, and most people with chronic illness, struggle with is the question of "when to say when?" Oh, wait, scratch that. I guess I should have said that one of the problems that pretty much every.single.person. in the world struggles with is "when to say when?" Seriously, let's just call a spade a spade and admit that this one's a universal brain teaser: all of us wonder how much is too much, and when enough is enough. And if we're really lucky, a few of us might actually come up with the "right" answer (or, you know, right for us, anyway) every so often. It's a little process that my friend Charlie and I like to call "whenning!"

Sorry.

Lately I've felt all sorts of pressure in this area, not gonna lie. It's something I've learned to live with, of course, but that doesn't necessarily make me an expert. When I was a child, for example, I was told not to horseback ride (I ended up competing internationally in showjumping), I was told to slow down and take college in several years (did it in 4 with multiple majors), and I was told there were a lot of really good places for me to live -- just so long as it wasn't a stuffy apartment in a gigantic city. Awesome.

I don't say any of the above to brag, by the way. If anything, looking at that list (and noting the countless examples I could have used as well), I'm a little embarrassed by my own stubbornness. And yes, before anyone keels over from the sheer obviousness of that statement, let me be the first to admit that I, Piper, am sometimes just a tiny bit on the stubborn side. Only rarely though, because the rest of the time I'm just flat out super stubborn. Let's just say it's part of my charm.

The thing is, I've recently had the privilege of talking with a lot of CFers and CF parents through this blog and other mediums, and the most common questions I get (besides the "what would you do differently if you could do it all again?" zinger, which is a whole 'nother blog to say the least) all have to do with the "when/when" question.

If my CF child seems a little lethargic but not overtly sick, when do I push him to get up and be active and when is it okay for him to stay home from school and rest a little longer?

If my kid needs to gain weight, when do I push him to eat and when is it okay for him to just tell me he's full and leave the table?

If I have some sort of really important or exciting event coming up, but I know it might run me down and make me more likely to get sick, when is it okay to choose "life" over CF for a day or two and when is that just asking for trouble? And how do I do that maybe just a little bit without being totally reckless about it?

If my heart is truly telling me to do something that I know my doctors won't approve of, but which for one reason or another means the world to me, when do I stand up and assert myself as a person, and when do I need to just bow my head and listen as a patient?

When do I know it's time to bite the bullet and go see that transplant team my CF doctor's been blabbering on about at clinic, and when is it okay (even beneficial) to believe that my lungs are magical and this scarring is totally gonna clear up tomorrow if I just push a little harder?

And, of course, my personal favorite,

If I really truly super duper honestly and cross my heart adore my job and can't imagine doing anything except what I'm doing and worked really really really hard to get here but know that it's really taking a toll on my lungs and body, when do I know the time has come to choose my physical health over my mental health? And once I DO make that extremely tough decision, when do I know if it might be safe to start crawling my way back or trying out something new, even if I just got put BACK on IVs for the 8 billionth time in the last 3 years and am now facing 2 weeks of polymyxin with a side order of sinus surgery?!?!

You know, not that I have a personal connection to any of these questions or anything. I just really enjoy detailed hypotheticals, is all.

Unfortunately, most of the time I don't have any answers, which just leaves me standing before an expectant parent (or staring blankly at a wordless reply email) and wondering whether I could casually pull the fire alarm as a way to change the subject -- though something tells me that wouldn't work too well in an electronic communication. Because, the thing is, I don't actually know what your (or your child's) limits are. I don't. I have no idea whether you're making the "right" decision by keeping him home from his best friend's birthday because that kid down the street has the sniffles, or if adding that biology course is a "good idea" or just an unnecessary risk for an English major. I can't tell you whether to get a dog because some people are allergic and some dogs bite, or whether to live in a big city because some places in the city are decidedly dirty but on the other hand you'll probably have access to great health care. What I can do, though, is be open about MY experiences, and admit that I've done both those things, risky or not, and I'm still breathing.

Since the transplant, my personal questions have changed a little bit, but they're still very much a part of my life. As an immunocompromised person, I risk infection every time I step out the door, but for the most part I still keep stepping. On the other hand, I now find myself "saying when" sometimes when before, with my CF lungs, I probably wouldn't have batted an eyelash (yes, NYC subway system, I'm looking at you on this one). Also -- and I'll admit that this one's a kicker for me -- I don't understand nearly as much about life with CF after transplantation as I did about life with CF before transplantation. I don't know when I can insist that the random pseudo they found in my bronch probably isn't a big deal and anyway I've got big plans for the night, doc, and when I should just suck it up, smile as graciously as possible, and check myself into that darn hospital I love so much. I don't yet know how big the risks are and (far more importantly), I don't yet really know my "new" body and how it will react to all this stuff I put it through. And, yes, for those of you keeping track, that's multiple times in the very same post that I have admitted that I just don't know. I'll just hang out here while you all go alert the media.

I guess the point I'm trying to make is that I'm not sure there is a "right" answer in some of the more complicated "when/when" situations. Sometimes there's a right choice in the moment (the choice, for example, to grab life by the horns and go for it) that might not in fact be the right choice in the long run. Or there's a choice that might be right for your health, but not so much right for your sense of yourself as a person, and your personal life goals. And sometimes the "wrong" choice (to put yourself through rigorous schooling for a stressful job) turns out to be right when you end up with killer insurance and awesome sick leave or disability policies.

Most of the time with these types of decisions you're not going to please everyone involved, but you are going to have to live (and hopefully make your peace with) the results. Which is why when people ask me that other question -- the "what would you do differently?" monster -- my usual answer is that I would probably do it all a lot differently, if I knew then what I know now.

And then I just thank God that I didn't.