Once upon a time, back in the days before prescription pharmaceutical ads packed the airwaves, there was an advertisement for a product called Bufferin® – a buffered aspirin product – that asked a surprisingly philosophical question: “Why trade a headache for an upset stomach?”
Why, indeed?
The point of the ad was that plain old aspirin might cure your headache, but likely at the expense of upsetting your delicate tummy. Bufferin, however, would simply make your headache go away. Assuming that no such product were available, though, and a binary choice were the only option, which option would you choose? One could argue that any decision would be ill-advised unless one knew just how severe the two options were relative to one another. Are we talking little-bitty headache? Violent, vomit-inducing migraine? Brain tumor? Aneurysm-level pain? As for the upset stomach, would it be simple queasiness or a week of puking and painful intestinal cramping? Unless you knew, how could you choose?
Now let’s look at a different choice. A more challenging choice. Let’s try a thought experiment, shall we?
What if the choice were between Alzheimer’s disease and ALS? If you had one and could swap it for the other, would you? Remember, this is a thought experiment. There is no wrong answer.
Alzheimer’s and ALS seem - at least, to me - to be inverses of one another. They are both degenerative, and they are both terminal, although most Alzheimer’s sufferers have a longer life expectancy than do those with ALS. But Alzheimer’s steals the mind, bit by bit, leaving the body more-or-less intact; while ALS chips away at the body, leaving the mind fully functional. (Dementia occurs in some cases, but it is not the norm.)
Which would you pick, if you had to pick one or the other?
My choice has been made for me, but I like to believe that it’s the one I would have made had I had the opportunity to choose.
Alzheimer’s might be easier on its victims, but it is hell on their loved ones. The heartache of watching someone dear to you lose his or her ability to recognize you is so searing, I would hate to inflict it on anyone. What I will have to deal with will be difficult beyond my imagining, but I - whatever essence there is of my self-awareness - will still be there.
It’s like that Ashley Brilliant line: “Due to circumstances beyond my control, I am the master of my fate and the captain of my soul.”
My Marvelous Meat-Mobile might be broken down, but I will still be in the driver’s seat - not lost in the fog doing a mile a minute.
But back to our little Thought Experiment. If you had to pick one or the other, which would you pick? Let me know in the comments. As noted above, there are no wrong answers.
“Depend upon it, Sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.” - Dr. Samuel Johnson
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Because I am a coward and tend to be pessimistic, the ALZ at least allows me oblivion as you pointed out. Either disease will affect my family and caregivers, but yes, the ALS gives you the all powerful brain.
ReplyDeleteSpeaking for myself, I would choose to have a "special cocktail" readily at hand which gives me control to when I want to shuffle off this mortal coil. But that would also mean I have to move to Oregon or somewhere other than TexASS that recognizes death with dignity. I want that control.
ALS absolutely. The most terrifying thing to me would be to lose my mind. I'm not pretty, not talented, but I have a kick-butt mind and personality. To lose the one thing I have? No way.
ReplyDeleteAs crappy as the 2 choices are, I would choose ALS. Having witnessed both of these, Alzheimer's is by far, a crueler malady. ALS, allows you to be present, for your self and family, Alzheimer's takes it all away.
ReplyDeleteThis reminds me of the 'would you rather be blind or deaf' questions. Obviously I'd rather not be either. But even though a huge part of my life is hearing based (music, conversation etc.), I would much rather be deaf than blind. I just can't stand the idea of the loss of control; the ability to see what is going on around me.
ReplyDeleteWith that in mind, I am probably not being a very good friend when I say that I have confided in my wife during the dark hours of the night, that my worst fear on this earth is ALS. After reading 'Tuesdays with Maury' and then seeing a friend suffer through all its stages, the idea of being strapped into my seat in the cockpit while the plane's controls stop responding, is absolutely terrifying.
But that said, I would rather go the ALS route than bail out of the rudderless aircraft, leaving my friends and family behind to wrestle with the unresponsive controls.
With some advance planning with your loved ones, you will be able to communicate (using ever-more-simple signals) for as long as anyone takes the time to look you in the face (or whatever the last muscle group is left to you to control). You will be able to tell people that the lights are on AND SOMEONE'S STILL HOME pretty much til the end. It aint much, but it is far better (in my humble opinion, anyway) than leaving a complete stranger that looks a lot like you for your family to visit.
With both diseases, your loved one's are left to struggle with the plane. But with ALS, at least you are still there with them.
Now you get to tell me what an asshole asshole I am for being that brutally honest with you.
Your honesty causes me no problems. Fact is, I've had those same thoughts in the dark hours. I had them long before I joined this club of which absolutely no-one would ever wish to be a member.
DeleteA number of years ago, two brothers came to our annual Men's Club retreat. One of them had ALS: He could walk, albeit with some difficulty (and now I have an idea of just how much difficulty), but his arms were completely immobile.
I was horrified as I tried to imagine all the implications of his condition.
But he had a brother who loved him, and who took care of him in every way. And when he'd sit at our tables, we'd take turns feeding him.
That was a powerful example of brotherly love, and it has stayed with me. It has helped me mightily to deal with my fears.
Our friend died a few years after I met him. ALS didn't get him after all... at least, not directly. He loved to go out dancing, and one night he slipped on the dance floor and took a header. Alas.
Don't be embarrassed about your honesty. Not with me. This is pretty fucking scary, and to pretend otherwise is foolish and dishonest. You are neither of those things.
Thanks. Just promise me that you will tell me if it starts to feel that I am making this about me. It's your party. You get to wear the hat and blow out the candles.
DeleteMy grandmother and I had this discussion over and over as she passed her 100th birthday and her physical presence deteriorated while her remarkable intellectual presence remained fully intact. How I wish this specific option had not been made for you.
ReplyDelete(I think I inadvertently clicked publish before I wanted to speaking of mind over matter).
ReplyDeleteTo finish It is a gift to us that we will continue to have the joy of your humorous, smart, deeply thoughtful mind.
It's a hard question to answer, obviously. I've thought about it for a week or so and am still not sure. However, I THINK I would rather have Alzheimer's. I won't know...what I won't know. I realize that it leaves my loved ones to suffer the most, but I won't know about it. I guess I'm selfish....but I simply cannot imagine being trapped in a useless shell, even IF my mind is still perfect. Not that my body is or has been or has done anything great, you understand. And it's starting to fail me now. But like a few others, I have a plan for when it decides to poop out entirely on me. Hopefully, I'll still be able to carry it out.
ReplyDeleteAlzheimers. Both are cruel to watch. I don't want to be aware.
ReplyDeleteAfter having family members have loved ones with dementia, I have thought about this question a lot. You have given much more to think about. I would say this to you. It won't be any easier for those of us who love to you watch YOU struggle through ALS. In some ways, it might be harder because all of us will feel sadness for what you are having to deal with.
ReplyDelete