I haven’t written here for a very long time. I think the basic concept behind writing a blog may have eluded me — rumor has it that you need to write more than once every six months. Now that the (first) book is done, hopefully I’ll be more diligent, and this won’t turn into a semi-annual update. Everything except me moves far too quickly for that.
I’m on my way back home from Arlington, Virginia, where I was serving on a proposal review panel for a research institute that funds patient-centered medical research. I was a little surprised to discover that medical research isn’t ALL patient-centered, but what do I know? Patient-centered medicine; hmmm….I’ve got a great idea. I think I’ll open a restaurant with a twist that no one else has thought of — it will only serve people who eat.
I kid the government, of course. It was only a day and a half, but I renewed acquaintance with a lot of great people (we ARE going to stay in touch this time, Len), met a lot more great people, did some good work, and made an acceptably low number of foolish semi-public statements.
I also was schooled slightly in the pitfalls of faulty short-term memory. My task on the panel was to report my assessment of patient-oriented goodness on four grant proposals. Although my expertise in everything else is slowly waning, I’m still an expert patient, so I felt qualified to offer viewpoints. Although I differed with other panel members on some of the proposals, I either could see where I had misunderstood the researcher’s intent, or could accept that there was just an honest difference of opinion about the value of a particular research project.
The wheels came off during discussion of the last grant application I reviewed, however. I was clearly out of sync with the other reviewers, and it only became worse the more I talked. True to form, I figured the way to resolve the problem was to argue harder. It worked about as well as it usually does, and about the same time the moderator halted discussion, I discovered that I was arguing about the wrong proposal. I could have come clean and publicly admitted it, but I honestly don’t know which is worse – clearly not understanding the details of a fairly straightforward research proposal, or arguing passionately on the wrong topic. Either one looks bad. Saturday Night Live reference again; Emily Latella this time. “…never mind.”
Fortunately, the integrity of the process prevailed, and I made the proper corrections. Quietly. Don’t tell anyone, ok?
I have missed the opportunity to tell you a number of tall tales in the last six months, such as:
The Legend of the Phantom DBS Battery Discharge
The Health Insurance Follies
How To Make Friends, Influence People, And Really Upset Your Wife By Suddenly And Without Warning Or Discussion Buying A Big Red Pickup Truck
The Dog, The Sharp Object On The Floorboard, and The Idiot SOB That Wasn’t Me That Ran The Red Light (she’s ok)
Uncommon Tremor (Corey, Hypothermia, and a PWS Mk116 300 AAC BLK Rifle)
They can all wait – first, we have to talk about driving.
I will have to stop driving someday, just as I will have to stop shooting, and eventually stop eating and breathing. That day is not today, but it’s a matter of some contention between Amy and me how soon it will be (since I already outed her in the book, I’ll use her name from now on, instead of just calling her “my wife”). My dyskinesia is slowly getting worse, and she’s reasonably and rightfully concerned that I’m going to be a danger to others and myself before too long. I disagree, of course. I think I have plenty of time, and my good days still outnumber my bad days.
There’s a broader issue here, though (as there always is when I begin to lose an argument). It’s not my place to put thoughts in Amy’s head or words in her mouth, but I will anyway for sake of discussion. She wants me to stay safe and last as long as possible, and that’s nothing but good. I want that too, and we sometimes differ on the definition of “safe” and “as long as possible.”
I have a lot of life left to live, and I want to do it with brio, a cool word that a confidante and trusted counselor once taught me. In case you don’t know (I didn’t), it means “audacious confidence.” Panache. Chutzpah. I don’t want to give anything up before I have to, but I also don’t want to be foolish or put others or myself in danger. Amy and I just disagree about where to draw the danger line.
So, we’ve agreed to use objective evidence. I’ll drive until the driving simulator folks at the hospital say I’m no longer safe, and I’ll take a test at least once per year. I’ll shoot until the range safety officer says I’m not safe, or until I don’t feel safe, whichever comes first. Given the way I stopped scuba diving, I’ll probably make that decision myself.
Driving, though…that’s tougher. American teenagers for almost the last 100 years have known the sense of freedom, independence, and limitless horizons that being able to drive brings. Giving up driving won’t just be giving up another piece of mobility; it’ll be giving up a large chunk of my freedom and capacity to be independent. It’s going to happen, but not today.
The confounding factor in this whole mess is that my judgment will become less reliable as time goes on, and I will rely on Amy to make decisions for me that she never has before. I don’t think she is eager for that day, and I am not either. It’s not because I don’t trust her to make the right choices. It’s because in “handing the keys” to someone else, either literally or metaphorically, I’ll be giving up another piece of ground to PD, dropping back to yet another fallback position on this armed retreat. Giving up another way to disobey.
The good news is that I couldn’t have a better partner to hand the keys to. A friend…oh, let’s call him “Larry” (because that’s his name) suggested that when I first saw Amy way back when, I saw a beautiful and smart chick that I immediately knew I wanted to marry. However, God saw a woman of character, tenacity, and sharp mind that would be right for this journey with me. Larry, when you’re right, you’re right. I will hand over the keys, and I hope and pray that when I do, it will be without recrimination and excessive wailing. But not today.
I started this blog post as I was sitting on an airplane at Washington Reagan National Airport in DC, on my way home from my grant review panel extravaganza. We were delayed for a short time on the ground while the pilots and maintenance team tracked down a problem with the aircraft. One of the maintenance crew thought he saw a wire hanging from the wing, and the pilot told us he wanted to have it checked out. This was after a three-hour delay from scheduled departure time even before we boarded. I wanted to get home, but I thought it was a prudent decision, so I hauled out my iPad and began writing. We taxied and took off after only an hour or so, just after the pilot made a short announcement.
“Just wanted to give you a little update. It wasn’t a wire. It was a piece of caulking that we use to fill a gap where the flap joins the wing, and I guess it looks like a wire. They just cut it off and everything’s fine, so we’ll be on our way. Sorry for the delay, and thanks for choosing Grabass Airlines.” (I made that last part up.)
Shortly after we took off and passed 10,000 feet, the cabin pressure went a little nutso. My ears began to pop, and as I Valsava’ed as enthusiastically as during my diving days, I saw everyone sitting around me doing the same thing. I glanced out the window at the wing, and saw the spoilers on the top surface of the wing pop up. Spoilers only have one purpose, as far as I know – to dump lift on the wing, either for a rapid decrease in altitude or for rapid but small changes in heading during approach. It’s a little disconcerting to see the spoilers deploy at 12,000 feet, and we descended rapidly and leveled off at about 5,000 feet.
The pilot then made an announcement over the PA.
“Folks (they always call you “folks” when there’s something wrong – it’s supposed to be soothing), we’re having a little problem with the cabin pressure, and we don’t know why. We’ve run our checklist up here, and it’s telling us that we need to land the airplane. We’re headed to Dulles Airport, and we’ll just land there and see if we can figure out what’s wrong.”
I thought, “Okay, maybe a little too much information, but good to know.” He continued.
“Since we’ve declared an emergency, you’ll see fire trucks and emergency vehicles waiting for us on the taxiway. They’re just there to check our brakes after the landing. Since we’re going to be landing heavy, they want to make sure our brakes haven’t overheated and caught on fire.”
This time, I thought, “Wow, WAAAY too much information. Did he actually use the words “fire” and “emergency” twice EACH, while we’re still in the air?” Yes — yes, he had. If there is a charm school for airline pilots, I think he might have been sick that day.
We landed, and were indeed met by many trucks with flashing lights. Serious men and women swarmed over our landing gear and checked the underside of the plane. I know this not because I saw it, but because…you guessed it. The pilot told me so.
“Folks (there it was again – not out of danger yet), they’re checking us to see what the problem might be. The good news is that our brakes are fine. They’re looking now to see if we might have had a tail strike. I’ll let you know more when I get it.” No doubt, I thought.
A tail strike occurs on some aircraft when the pilot, either on takeoff or landing, pitches the aircraft up too sharply and the back of the plane drags on the runway. This is not optimum – sparks and damage ensue, and it makes the flight crew use words like “emergency” and “fire,” sometimes more than once. The pilot was admitting over the intercom that he just might have dragged the back of the airplane over the runway for a thousand feet during takeoff, emitting a shower of fire like a roman candle and breaking things that we might need, say, at 36,000 @#$%*&! feet. After about another hour, he made it all better, though.
“The maintenance team has been over the aircraft, and they can’t find anything wrong with it. I’m not sure what happened, but I hesitate to just take off, since we might have to come back here and do this all over again.” Yes, hesitate — please. At least he didn’t call us “folks.”
After another hour, he gave us the scoop.
“Well, after considering the situation, I’ve decided not to accept this aircraft. There’s another one here, and they may be able to give us that one. We’ll let you know as soon as possible – we’ll taxi to the gate now. We’ve got meal vouchers for everyone, so that the condemned can eat a hearty meal before we leave again.” (Again, I made that last part up.)
As he started the engines and we began to taxi, the cabin crew played the arrival video.
“Thank you for flying with Grabass Airlines…”
The entire cabin erupted in laughter.
So, I’m in a hotel tonight in Herndon VA, in a Grabass Airlines-provided suite, enjoying a little rest and relaxation and re-engaging with y’all. I have a flight out tomorrow morning – on another airline. Life is risk, and in my view, a good life is partly about managing the risk and living with brio. There’s no need to be stupid, though.
May God bless you all.
Enjoyed the replay of your airline fiasco. As a former flight attendant for another airline, I can relate to your experience. The only one who was inconvenienced more than you was the crew! At least you lived to tell about it and made it humorous!
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This is one of your best posts thus far! I laughed where I should laugh but also felt sad in the right places as well. Your ability to make light of such a serious and debilitating disease in spite of it is remarkable. You’re definitely taking the high road and I’m so proud of you — grateful and thankful to be the MIL in your corner. I’m not sure I’d be able to do the same but I applaud you for your willingness to refuse to give up. To quote your friend and mine, Don Geiger, “It’s always too soon to quit!” I pray that your tenacity and approach to living with PD will enable other PWPs to live their lives with brio! Just keep thumbing your nose at PD and live your life to the fullest — God is right there alongside you cheering you on, enabling you to do just that — He always has your best interest at heart.
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