Tuesday, September 25, 2012

Reality Bites

One of my favorite parts of any visit to the hospital is leaving. Seriously, it's right up there with feeling better as one of the most pleasant aspects of an admission. Not that my hospital isn't amazing, of course -- because it totally is. I'm lucky enough to be seen at a hospital that has both an incredible CF team and a caring, smart, and proactive transplant team. Everyone -- from the nurses on the transplant ward to the PFT techs to the pulmonologists to the slew of other doctors/staff members I have on my team (infectious disease, endocrinology, ENT, thoracic and vascular surgery, allergy . . .  the list is pretty impressive) -- works hard every time I pass through those doors to make me happier, healthier, and just basically more Piper-esque. I'm incredibly grateful.

And yet, I still love leaving. I love packing my stuff and actually putting on street clothes. I love signing my discharge papers. I love cutting off my hospital ID and allergy wrist bands. I love walking outside into the fresh New York City air (ha, ha). I love looking back over my shoulder and waving goodbye at that wonderful team and everyone else still hard at work healing or being healed in that wonderful, awful, miraculous place. I love coming home to my puppy, my friends, my food, my bed, and a hot shower. I love, love, love, love, LOVE the freedom to wake up the next morning and know that I am free and I am alive and I am able to make happen anything I darn well want because I'm a rockstar and I can do it all by myself, thank you very much. I love it.

Well, okay, so maybe it's more accurate to say that I love most of it, because that final part -- the "making things happen" part -- is almost always easier said than done for me after a few days spent living like a sick girl in the hospital time warp. By the time I actually check out of the hospital and head back into the real world, it seems like I always find myself floundering for a couple of days before I manage to regain my footing. Even after 30 years I'm still not quite sure why this happens so regularly or why I never seem to learn my lesson and find a way to avoid it, but it does and I don't. Without fail the first few days of "freedom" end up being about 30% actual life and about 70% of me standing around looking bewildered and making countless but unhelpful "to do" lists about how to get back on track while I simultaneously agree to every single request made of me so as to prove just how "normal" and "NOT SICK" I really am.

Or, as one of my wonderful friends recently put it in an email:

"It's cool, Pipe. We wouldn't expect anything less from you."

Yeah, me neither.

I know I can't be alone in this. As a group, most CFers I know tend to be pretty intense people. As CF adults, we've lived with illness and hospitals and doctors for a long time, and many of us are masters of acting as nonchalant as possible in the face of what most people would consider some really serious health issues. I watch a lot of my CF friends make the exact same comments I've made my entire life ("Oh, the hospital? You mean that two weeks of IVs/rabbit blood/coughing up blood/bowel obstruction/pain/poison/whatever? That little thing? I got out YESTERDAY, man! I'm totally FINE now! Life is AMAZING!") and I always wonder: are they really feeling that great after all that, or are they just really darn good at faking it? Or is it maybe just a little bit of both? To be honest, I don't really know the answer.

What I do know, though, is that when most "normal" people come back from the hospital, they're expected to be tired, to rest, to require a little downtime. When I come back to the hospital, people apparently expect me to be extra intense. This little pattern I have of being manic right after an admission is, I've recently discovered, NOT normal. Apparently I'm NOT the status quo. And even more surprisingly, it seems like most "healthy" people are able to actually allow themselves to be sick and then allow themselves ample time to HEAL and FEEL BETTER without immediately feeling the need to prove themselves as superhuman the second they get discharged. Wowza, guys. Who knew?

As for me, I'm not sure "normal" is really in the cards anytime soon. Personally, I'd settle for a little more rest, a little less crazy, and a lifetime's worth of lessons on how to make that happen.


  1. I am exactly.like.this.

    Everytime I go into the hospital I come out feeling like I have to do everything! I have to catch up on everything I missed AND be the fun mom for my kids again AND be a great wife AND run all the errands. Its exhausting!!!!!

    Thanks for sharing!

  2. Exactly! Perhaps it's because a.) we compare ourselves to other cysters/fibros - therefore the standard is very high or b.) the "normal" amount of time to recover and ease back into normal life is simply more time than we're willing to take out of our "normal" lives.