Monday, June 6, 2011

6 Stages of (Hospital) Grief

I've noticed that every time I check into the hospital, I follow basically the same behavioral pattern. It's a fairly simple formula. First comes the moment when I suspect that something might be wrong and that it could, conceivably, be bad enough to land me in-house (keep in mind that I do most of my IVs and procedures as an out-patient, a personal preference that has, at times, both angered and delighted my various doctors through the years). As soon as I suspect this sort of "bigger" problem I start to prepare mentally, by which I mean that I become delusional and convince myself that I'm an extremely calm and serene person by nature (all evidence to the contrary aside). This part of my "Personal Patient Process" tends to involve lots of faraway, thoughtful gazes and the overuse of cliches like "it is what it is" and "things could be worse." On a more productive level, it is also characterized by an increase in my motivation to attack the problem itself, all in an attempt to avoid what is typically by that point inevitable. I do awesome things like cutting out all sugar from my high-fat, high-cal diet, or throwing myself even harder into exercise. Neither of these things has ever proven helpful, but I do them compulsively anyway, in the same way that I continue to pretend my dog might someday stop begging at the table. Sure, it's a long shot, but I'm a big fan of hope.

At some point during stage 1 of the process, I will also call and alert my doctor to the problem, assuming he doesn't already know. This part is tricky, because I tend to dislike it, but I'm also not suicidal, so I know it needs to be done ASAP. (I should note, at this point, that I only dislike it because I'm not a huge fan of feeling sick at all, much less admitting to anyone else that I feel that way. It is not in any way, shape, or form because I dislike conversations with my doctor generally, nor a statement about my team.) The other thing that makes this part tough is that it typically leads to stage 2: the moment when my doctor decides I need to be admitted, and tells me as much.

This is when I get sad.

Honestly, I think this moment is almost always the saddest part of my entire hospital stay, regardless of what comes next (with, of course, a few very notable exceptions). This moment to me represents pretty much everything I dislike about being a patient. It's the time when I'm forced to accept (again) that nothing I may have planned or wanted to do or hoped for will ever really trump CF. It's the moment when I have to acknowledge that everything I truly love and adore about my life is also wrapped up with a lot of things I truly dislike, and that the former simply isn't possible without the latter. It's the moment I remember that chronic illness is often way more than just a series of minor, fairly insignificant challenges or inconveniences; it has a much darker side too. And while, yes, I completely acknowledge that all of that might sound a little dramatic for a few days trapped in a boring hotel full of mostly much older people with a really bad meal plan, I still stand behind every single word of it. Because for me, personally, the hospital is very much wrapped up in the notion of submission to my disease -- something I think it's pretty obvious I don't like to do -- and I haven't yet found a way to reimagine that relationship.

Luckily for everyone involved, when stage 2 passes things tend to get better. Stage 3 in the hospital is kind of like a homecoming: It's annoying and hectic and definitely overblown, but I also get to see people again and I haven't quite remembered yet why I dislike being locked up so much. I'm also a little high on myself at this point for doing the smart thing and for being so darn nice. Blown IV? Laugh it off. 3 AM wake up call? What the heck, I slept fine yesterday in my own bed, so it's cool. This is when I put out my visitors welcome mat and vow that THIS time I'm totally going to wash my hair every other day while I'm in here. Depending on the length and intensity of the admission, this phase can last anywhere from 5 minutes to 5 days. Maybe longer, in a perfect world, but otherwise 5 days tends to be just about my upper limit.

And then we come to stage 4. The Wall.

Stage 4 isn't so much a state of mind for me as it is a trigger -- one relatively large event or a series of much smaller things that leads me to decide I've had enough. If I'm lucky, I can feel this stage coming on from a few hours away, and sufficiently warn people that The Wall is coming. I can suggest that maybe people might want to consider not visiting for a day, or running in, dropping off food, then dashing to safety until the next meal, much like I imagine the unlucky fellow who has to feed the bears and tigers must do at the zoo. And while it would be a fair statement to say that I'm not proud of the person I sometimes become during this particular stage, it's equally fair to acknowledge that I do, for the most part, refrain from causing any serious damage. I might snap, but I typically feel so guilty about 5 minutes later that I start entertaining crazy ideas like sharing my smuggled in non-hospital rations or allowing the wounded party to sit on my bed. Insanity, I know.

For the rest of the stay after The Wall, I typically slide seamlessly between some less-patient version of myself and a raging nutcase. Stage 5 is therefore lovingly nicknamed "The Asylum", as it more or less consists of me plotting escape and everyone around me deciding that I should probably stay put for a few more weeks, albeit most likely in the psychiatric unit upstairs and not the transplant floor. This is also the only part of the program that may or may not involve costumes (long story).

In the end, of course, I always get back to the same truth, which is that while there is plenty to complain about in here, there is also always plenty to celebrate as well -- such as friends and family willing to suffer through my antics. And even though this may not be the most fun place for Bob and me to hang out as we approach our one-year anniversary together (!!), I will say this: it is the right place. For now, anyway.

Which brings us to stage 6: Acceptance. Not that this is where I belong, but that it will bring me one step closer to getting there.

Stay well, beautiful people.

- Posted using BlogPress from my iPad


  1. Awesome post Piper. Even though I am a mom to a cfer, I can relate to the emotions that this disease brings from my view and how they are very much related to how my daughter may feel in years to come. Thanks for being so honest and sharing your thoughts. Here's to getting out of there!

  2. Pretty much sounds like my stages too, though at different times.


  3. I hope Stage 7 - Elation at going home - comes real soon for you! {{{hugs}}}

  4. As a fellow CFer - this is brilliant... such truth. Hope you get better FAST!!