Control

My goals are different, and I want to face life on my own terms. I want to teach my kids by example, to encourage them to look where they want to go and reach for that goal with fierce tenacity. And that’s how I want them to remember me.

I spent most of my career in cancer diagnostics. Yes, there are other types of biopsies and surgical specimens looking for a variety of infectious or inflammatory diseases, but the bulk of the focus of surgical pathology is ruling out, screening for, or helping to direct the therapy of cancer.

Cancer is a scary disease. My mom was terrified of it. I am sure it didn’t help that it took both her parents. Back then, chemotherapy was not too good. At the beginning of my career, I quickly adopted the mindset that no one was ever going to give me chemotherapy. Feeling really shitty for weeks or months before dying anyway was just an ordeal I would gladly skip out on. But that’s just me, and different people have different ideas.

I use my wife and I as examples of different polar-opposite philosophies: my wife’s life revolves around her girls (so I constantly compete with the dog and the cat for the third wrung on her ladder). If faced with a terminal diagnosis, her primary goal would be time. She would want to watch the events in the life of her children unfold, and she would fight like nobody’s business for every precious second.

I would go with the squirrel suit.

My goals are different, and I want to face life on my own terms. I want to teach my kids by example, to encourage them to look where they want to go and reach for that goal with fierce tenacity. And that’s how I want them to remember me. Hence the squirrel suit. I’d really like one of those jet wings, but I hear they are tricky to fly and I have no experience so the tumble followed by vomit followed by my death and the destruction of some contraption that can’t be cheap…a man’s got to know his limitations. The wingsuit is a pretty binary trip that either ends well (in which case it was awesome and you get to go again) or it just ends.

I never really thought about dementia until it hit my mom. How ironic that she was stricken young with the one disease that is arguably worse than the cancer she feared. And now as my dad suffers with a different flavor of the same shit sandwich, I find I fear cancer very little now. Diseases like cancer are terrible and cause tremendous suffering and death. But there is one crucial difference: control.

The horrifying reality of dementia is that the victim is powerless. By the time you have any idea what is happening, the ability to decide your own fate is passed. I would prefer to avoid both suffering and death, but I would accept either or both in order to maintain control.

My hypothesis on poverty can be over-simplified as a lack of connections, but I find myself wondering if lack of control is another component. For sure, no one wants to lose control of their own fate.

And maybe a little of that is happening to us all right now.

We have been at this for weeks, trying to assess this new threat, how bad is it really, who is at risk, what will it do to me, how do I keep from getting sick. People deal with these things differently and for a variety of reasons. Some want to take shelter and wait it out, suffering now in the hopes that the storm will pass, biding for time. Others want to stare it in the face, and if it doesn’t go well, at least they go out on their own terms. And the more the stakes rise, the more polarized we become. Unlike some theoretical discussion about an issue that doesn’t genuinely impact our lives, this shit is very, very real.

Many have prioritized keeping people safe, but maybe what people really want is a bit of control. Is that too much to ask?

When you have lost almost all your control, sometimes it’s the little things that help you keep some semblance of self. Maybe what your neighbor needs right about now is to feel like they still have some say in their own destiny. Maybe sheltering at home is not the way they want to face a crisis. Maybe what’s best for some is simply allowing them some shred of independence. But it’s not about you, it’s about protecting others, right?

My dad has lost every spec of control. For two months he has been locked up in assisted living, suffering in isolation. He had already been having difficulty expressing himself, of finding the words he wanted to say, but now he can barely complete a sentence. Still, I don’t need the words to know what he is thinking: this isn’t what I want, this isn’t how I want to go out. And he is not alone, as many of our most vulnerable would choose to face life on their own terms, even now. I know I am really struggling with this strategy of sacrificing our kids to save our elderly.

It all reminds me of a bit by George Carlin: “Live and let live, that’s my motto. Anyone doesn’t agree with that, take ‘em, out back and shoot the MF.” Isn’t that what I am hearing?

I’ll put it in print now – like an advance directive – so when the time comes it’s all recorded: don’t even think about doing this for me, because if I had control, this is not the choice I would make.