A New Normal

I purposefully didn't mark the date on which I visited Dartmouth-Hitchcock hospital last summer with the worst pain I've ever had in my life.  While I'd been sick for about a month beforehand, suddenly I felt myself being stabbed in the side with an icepick, taking my breath away and making me unable to speak or move or think.  I didn't know what was happening to me, but it's fair to say that I was disturbed when the doctor came in to show me the CT scan results, crying, begging me to take pain medication (I'd refused all but Motrin) because it was the worst atypical pneumonia she'd ever seen.  I didn't mark the date, because, from that point, none of it ever really went away... the pneumonia cleared some, then came back, then cleared, then came back, and the pain comes and goes.  I still take only Motrin and have convinced myself that I can manage it simply by willing it away.  As the Zen proverb suggests, pain is inevitable, but suffering is optional.  I opt out.

But then there's the other pain, and that's the pain that I felt last week when my godsend of a pulmonologist met with me to review the results of my second bronchoscopy; he indicated that this thing, whatever "it" is, is probably my "new normal."  "Nothing voids the warranty," he indicated, but "it" is not going away.  I'll undergo a lot more testing and start rotating on and off of drugs every three weeks.  I'll be a pulmonology patient for the long haul.  Maybe someday something will show up on a new test -- a new allergy, or some autoimmune condition -- or there will be a surgical correction for the huge diverticulum that makes it more likely that I'll get pneumonia again and again.  But for now, this is life: limited.  Or is it?

If I can will away the physical pain, and if I can will away the hurt from being defective (that's what it feels like; might as well call it what it is), then perhaps I can will myself to live as normally as possible.  Yes, perhaps there's a "new normal," one that includes about seven drugs already with more to come, but who says that can't be pretty close to my "old" normal?  (Let me just stop here to give a shout out to those who say "was she ever normal?"  I laugh with you!)

So, with that, I started walking.  The doctor reassured me that exercise won't kill me, just to acknowledge my limits and start slow as the inflammation, hopefully, dies down with the new meds.  I took my daughter with me, because I'm still afraid to exert at all and be alone, and we walked.  Finally, I felt free, and I realized that there were probably a few moments here and there that I thought I probably wouldn't be here right now to walk with her -- that life wouldn't ever be normal again (whether "new" or "old"). It's a terrible feeling, much worse than stabbing pain in the side; it's like a collapse of the heart.

Some of that heart is still collapsed a little, for another downside of living with a chronic illness is having to watch others cope with it.  From my husband who has held my hand without a single complaint, to the kids who have had to become more independent and a lot more patient, to my parents whose feelings I can't imagine, to the friends who don't know what to say... illness changes them all, too.  It changes them in good ways; you sure do learn who your friends are when you're down and out.  Some people don't believe it because you "don't look sick."  And some people just don't care; why call to see how someone's doing to hear a sad story that interrupts your otherwise happy life?  Then some people are real jerks, sweating the small stuff and trying to make you suffer for their pettiness.  I pray for those people the most, for they're like the people who questioned Jesus's treatment of lepers and prostitutes.  They just don't get that life isn't always sunshine and roses -- and they also don't understand, like I'm starting to, that sometimes a whole lot of good comes from something pretty awful.

And that's where I am now: with all I'm learning about people and about sickness by going through this, something I like has come out of it, and that's a "new normal" me -- a me that, quite frankly, I like a lot better than the me I was before this happened.  I do a whole lot of things that I didn't used to do.  I say "no," and I don't feel guilty about it.  I don't pick fights, but I also don't lay down and take being pushed around.  I stand up for myself a lot better, but I also let things go a lot more.  I choose to spend my still-limited energy on things that are important; when doing something involves a trade-off in fatigue, it has to really be worth it.  I smile and laugh a lot more, and I don't cry -- I can't, because it creates mucus, which is a big part of my lung problem.  I play harmonica in my car.  (Believe it or not, that's pulmonary therapy!)  I don't stress out (that's bad for anyone's health), and I focus on happiness.  As Aeschylus wrote, "happiness is a choice that requires effort at all times."  Boy, is that ever the truth!  People will continue to be petty naysayers, and reacting to them or letting them bring me down is not an option.  I can focus on all of the good and positive wonder in my life -- a fantastic family, the world's best husband, remarkable children, and a whole lot of friends who never would bail me out of jail because they'd be in there with me saying "damn, that was fun!"   (Not that I plan on going to jail anytime soon...)

I think a lot can happen in someone's life to give them a new perspective on what's important, and I also believe that anyone can change into a different person at any time... sometimes that's good, sometimes not.  I'm not thrilled that it took my sickness to teach me to live a little differently, to let go a little more, and to realize the richness of friends I have while also cutting loose the ones that had no time for me in my hour of need.  I don't have to be a perfect person in order to feel that I'm entitled to live a good, fulfilling life for as long as I have one to live; I just have to "be my best self," and I define that.  I'm a work in progress, as we all are. 

So... that's my "new normal."  I've heard a lot of "you're handling this really well" from people, and I'm thankful for that.  I have no room in my already-cluttered mind for self-pity or wallowing; after all, I have no more right to be here and to be free of illness than anyone else does.  And a positive attitude does go a long way, even if dealing with negative things.  I'll walk a little farther each day until, finally, I've walked as close to wellness as I can manage.  My lungs may be weakened, but my spirit is stronger thanks to those who lift me up.  How blessed I am to be surrounded by so many angels.