What If I Just Completely Lose All My Marbles?

This may be a tough post to read. It was difficult for me to write. Nevertheless I am compelled to address it for those who are looking in from the outside, and more importantly, for those approaching similar difficult decisions in the near future.

I'm involved in a research study at Penn State regarding end-of-life decisions and attitudes toward advance directives, life-saving measures, and how the hospital communicates with patients about such issues. Christie and I met with a research assistant Friday to answer some of these questions ourselves, take some surveys, and discuss my own options about all of this.

We breezed through most of the questions, much to the amusement of Rene (the assistant administering the surveys). Most people look at my age and assume that all of these issues are relatively new to us. But we have been discussing them on and off for nearly fifteen years now. I was told at age 28 that I had 2-5 years to live. This kind of stuff has become light banter over breakfast for us. So we plowed through the questions pretty fast, moving a percentage slider between 0 and 100%.

Q: "If you required a ventilator/feeding tube to breathe for you up to one month/six months if you were assured your condition would return to normal, how bearable would this be?"

A: Very. We're taking the long view, right? Who wouldn't endure half-a-year like that to get their health back? Kurt Cobain, maybe.

Q: "If you were confined to a wheelchair for the rest of your life due to life-saving measures, how bearable would you find this?"

A: Not fun, but bearable. Any day above ground is a good day, eh?

Q: "If a life-saving measure such as CPR caused severe dementia, loss of cognitive function, or permanent brain damage, preventing you from caring for yourself or having meaningful relationships with friends or loved ones, how bearable would this be?

A: Whoa, whoa, whoa. Back up there a second, Betsy. Dementia? Brain Damage? Does this mean I run the risk of becoming a Republican or liking The Doors? Bring me a handgun, stat.

Did you know that 85-90% of people who receive CPR sustain permanent brain damage? NEITHER DID I! I feel betrayed. CPR works so well on Baywatch, ER, and even on the X-Files. The shock of learning this is rivaled only by the emotional pain of realizing Mulder and Scully lied to me. Trust No One indeed.

Since I was diagnosed with HCM in 1998, I have probably forgotten more than most cardiologists have read on the subject. Ditto transplants. I would confidently go toe-to-toe with any cardiologist on the practical implications of central and PIC lines, diastolic failure vs. systolic obstruction, gradients and their effect on cardiac output and ejection fractions, the relevance of ejection fractions for congestive failure vs. diastolic failure, side-effects and long term benefits of pretty much any cardiac drug in existence (as well as who makes them and how much their CEO's earned last year. Bastards), or the use of VAD's and internal devices in various stages of failure. If they'd let me stay awake for the transplant procedure, I bet I could run the thing. I've watched so many transplant procedures online that I finally ran out of internet. I know all this stuff because ER cardiologists kept trying to kill me and I figured I'd better know what's going on. It's the reason we are in Pennsylvania instead of Little Rock or St. Louis - if I know more than my cardiologist, time to move on.

But not until Friday, sitting in front of this survey did I consider the fact that I could come away from this whole thing with brain damage. I know transplants carry a heavy risk of stroke while on the table, but those statistics have become way better in recent years because the drugs are better and the procedure is shorter than it used to be. Christie deals with post-transplant patients all the time that have had such problems. But I'd never really considered the question: If you had to live with debilitating brain damage, would it be worth it?

Look at your kids, then at your hands, and around the room you're sitting in. See those books? You can't read them. See your kids playing that video game? You can't join in. Hear the conversation around the dinner table? You have nothing meaningful to add. The most intimate interaction you have with your spouse is when they help you to the bathroom. Maybe you can't listen to music anymore, certainly can't play an instrument. I'll let you chew on that for a moment.































Our light-hearted joking and buzzing through end-of-life questions came to a screeching halt. What if I couldn't cook Chicken Marsala ever again? Or stumble through a song on the guitar? What if Paul singing, "When I find myself in times of trouble..." registered no meaning? Or I couldn't finish reading the Fablehaven series to the boys? Or enjoy an episode of Gilmore Girls with my wife? These are small things, but they are what life is made of. In the words of Rob Thomas: "Our lives are made in these small hours, these little moments, these twists and turns of fate. Time falls away, but these small hours will remain."

Physical limitations are daunting, but sometimes people who can't work around are often just lazy. The mind is where we find ourselves - it's who we are. It's the well from which our creativity, sense of humor, and unique perspective spring. I can't play drums anymore, but I can write songs. I can sing. I can listen. I can't work anymore, but I can learn to paint, cook, clean, code. Most of all I can imagine.

In some ways, I wouldn't mind being trapped inside my own mind. Maybe I could finally figure out what the hell is going on in there, or at least why it's stuck in the 80's. But ceasing to interact with loved ones? Unable to express myself verbally or otherwise? I don't know if I could do that.

I've come to a season in life where I finally care about things like calculus, and reading Marcus Aurelius, and listening really hard to Theolonius Monk. I need to perfect my bouillabaisse sauce and study more Fauvist paintings. I've yet to watch Indiana Jones with the boys because they're too young. I haven't taught either of them to shave, or date, use a weed-eater, or avoid extended warranties. This is clearly not the time to lose my mind. I have a death-grip on what's left of it as is.

So I struggled through those questions, and I have to be honest; the slider more often than not ended up pretty far toward the "unbearable" side of the scale. I guess I've known all along, somewhere in the dark corners of my brain that things could go horribly wrong in this aspect. I've been so focused on the physical that I never considered how mental problems could affect my quality of life (not that they don't already, but you know what I mean).

We finished the session, went to Houlihan's for lunch and laughed and talked about life, the kids, work, A.A. Milne, friends, and mostly the calamari and ginger shrimp. Because that's what you do. We've learned that, as much as possible, you have to answer these questions, consider worse case scenarios, then go play a game with your kids, or drink good wine, or eat good food - whatever it is that makes life enjoyable for you. I suspect I'll never have to deal with any of this when it all comes down, but in the meantime, there is a whole world within and without and I know very little about either. There's no time to brood over it.

Some of you reading this have the same cloud hanging over you. We have a choice to let the anxieties and the what-ifs permeate our lives, or to keep living. The latter is the hardest. But we face this choice constantly and doing the former is to let the disease win. In which case, why are we fighting so hard to stay alive in the first place?