I’m told that occasionally I write about things that make people uncomfortable. I don’t plan it that way – in fact, I usually don’t know what I’m going to write about when I start. However, I have a sense that tonight’s effort might be one of the uncomfortable ones. For me, it sometimes feels like riding a roller coaster for the first time, and not being completely sure they’ve finished building the damned thing. I hate roller coasters even under the best of circumstances, and not knowing if this ride will end where it started or if the tracks will disappear before we get home adds to the suspense. I know many people love both roller coasters and suspense – more power to ya, I say. Have my portion – I’ve got enough nausea and uncertainty, thanks. And tonight, I’m afraid to go to sleep.
I’m not sure if i’m the only one who thinks this, or if I’m just one of the relatively few guys who admits it so publicly, but having a chronic, incurable, degenerative illness is unmanning in a lot of ways. It’s an overgeneralization, I know, but I think that most people, and maybe men in particular, would prefer to see themselves as strong, self-sufficient, competent, reliable, and perhaps above all, unafraid. Life in general tries to flip each of those characteristic on its head, but chronic disease seems to flip them all at the same time.
Obviously, I don’t speak for anyone else; only for myself. I think at one time or another, though, we all tell ourselves lies just to get through the day, and we sometimes even believe them.
“Afraid? Me? Nahh – I actually LIKE rattlesnakes.”
“Buddy, if you don’t watch your foul mouth around my kids…no, don’t get up, and yes, that IS a very nice knife.”
“Ask directions? Are you KIDDING? My middle name is Magellan.”
“I’ve been skiing since could walk, thanks. And no, that’s not a tree branch sticking out of my head; I’m just having a bad hair day.”
The lies we tell ourselves help us maintain our self-image, the “me” picture in our own minds. With some, the lies are small and inconsequential, because who they really are and who they think they are are close enough to require only minor scaffolding. The unfortunate ones lie to themselves about almost everything, and the true unfortunates don’t even know they’re lying.
I think that a chronic incurable illness steadily makes our fictional self-image more and more implausible until one day, we’re just unable to believe the fiction any longer, and the universe shifts around us. It’s jarring to realize that you’re not physically strong any longer, nor self-sufficient, nor competent at anything you choose to be, nor reliable, nor fearless. Even if you never actually were any of those things, the fiction dies hard.
And so, I’m afraid to go to sleep tonight, because I know I’ll wake up choking and unable to breathe. I did everything right today: I took the right drugs on schedule, I was careful about what and when I ate, and I haven’t eaten anything at all since 7 PM. In spite of my best efforts, all evening I’ve felt the burning at the back of my throat and the foul, bitter taste in my mouth that presage the worst of my nights, and I’ve already had one episode of coughing, wheezing, and choking just from the mouthful of water with my evening pills. If I lay down to sleep, I’ll wake up coughing and choking in less than an hour, with the added downside of scaring the daylights out of Amy and Izzy. So tonight, I’ll sit up and wait for a better day tomorrow, and until the daylight comes, I’ll think about the universe shifting around me.
I don’t know for absolutely sure, and I never will, but the evidence indicates that the chronic, degenerative, incurable disease that is a part of my life was caused by toxic chemical exposure during my 10 years of military service. The Federal government (notoriously difficult to convince) agrees 100%, and they are doing the right thing by me and my family, saving themselves a severe ass-whuppin’ from Amy (she’s great as an ally and scary as an enemy). The fallout may not be over yet, though. I’ve been spending time with a whole new set of doctors in the last few months, and I took a new, not-quite-experimental test today that hopefully will tell me in the next week or so if I have cancer.
I probably don’t, but it’s a shock to hear the word come out of a doctor’s mouth as even a possibility. If I don’t, the drinks are on me (assuming you drink diet lemonade like I do). If I do, we’ll deal with it, and the drinks are on me anyway. Now that my DBS battery replacement is done (not even a story for another time; boring and uneventful, just as promised and as it should be) it’s almost amusing to think of Parkinson’s as on the back burner for a week or so, sleepless nights notwithstanding. PD was, until very recently, my enemy. Now, it’s only one of potentially multiple adversaries in a two-front war. I feel like Europe during WW II.
I’m not who I used to be, but maybe I never was. I can’t bench-press 300 pounds or run the quarter-mile in 50 seconds anymore, but one of those is a lie anyway. I’m not an island of rugged self-reliance, but I have more friends and better relationships now, and I’m better for it. I can’t shoot, ski, or scuba dive anymore, but I can still build a nice F-15D in 1/32 scale if you give me a month. I can’t run a business anymore, but I’m fortunate to be working with a newly founded non-profit organization with great people who let me do what I can. And I’m not a steely-eyed, square-jawed fearless missile-man rocket scientist, but with faith, family, and friends, my fears are manageable. And for better or worse, I’m still me.
Well, I feel better. That wasn’t so bad, now was it?