Q&A: La Vida Loca?

The delightful Delighted Hands asks this question:

My family discuss this and we have very differing views; if facing a serious and probably terminal illness, what would we do-savor 'normal' life or explore a frenzy of activity before it's too late?

That is an excellent question! (And thank you very much for asking - it's hard for me to think of things to write about at the best of times, and at this frenzied moment creativity is at a low point.)

The answer is a little tricky; I can't give a definitive answer from a perfectly objective point of view, because I don't think there is a consensus among a board of experts from which to draw a conclusion. So I can only speak from my own experience and my own heart.

Let's start with a tricky aspect of the question in the first place: what I - and probably other people who have not directly cared for a loved one with terminal illness - did not know is that to a large degree, getting the diagnosis of a serious/terminal illness tends to carry with it a certain degree of lack of control over how we spend our time.

We don't get told, "You've got a year or so, go home and do what you need to do to make peace with your life."

Nope. When we are diagnosed with a serious illness, we suddenly find our calendars filled up with doctor appointments, treatment dates, medication schedules, nutrition requirements, all sorts of lifestyle changes. And if you are like me, you spend a lot of time in research. All of which take up a lot of time, energy, time, finances, time, patience, more energy... and time.

On top of this, we end up dealing with not only the energy drain and pain levels inherent in the progression of the disease itself, but we also have to deal with the energy drain and pain levels that the treatments for the various conditions cause. So we tend to move slower and sleep more (even though our sleep is rarely what you'd call refreshing), which limits our free time even more.

So not only are the number of days in which we are going to be breathing on this earth limited, but the number of hours we are able to spend as we would like are limited, as well. And our ability to do the things we'd like to do is often limited by our physical issues - sometimes severely limited.

But let's set all those considerations aside for a moment, and assume that somewhere in all those scheduling issues and treatment issues and physical limitations, you are able to make some time for yourself, to do what you want to do (within your physical limitations). How are you going to spend it?

Well, first of all, understand that for many of us, the demands of Real Life do not stop when we get sick. Just because our spouse and our kids know that we might not be there next year, they do not stop eating or working or going to school, they still have to see doctors and pay bills and do their homework, and of course the pets and the house do not suddenly start taking care of themselves.

And yes, everyone knows that eventually those things will have to be taken care of by someone else, when you are no longer there to do them. But habit is habit, and hardship is hardship, and nobody wants to start living without you before you are even gone. That eventuality is scary, and everyone wants to put it off as long as possible - so you all tend to hang on to the habits that you have developed over your lifetimes together. It's convenient, and it's comforting in the face of the dark unknown.

And really, you want to hang on to 'normal life'. Partly as a denial mechanism, partly as a way of retaining your lifestyle (and life, if you need to work in order to pay those doctor bills and do those silly eating-and-shelter things) - and partly as a way of retaining your independence and feeling of being part of the world for as long as possible. Who of us wants to be useless and a burden to our loved ones, a lump that everyone else has to step over or move around in order to get on with their own lives? Not to mention that sitting around doing nothing is incredibly boring.

Add to that the fact that sometimes the everyday stuff is pretty darned sweet, but that sweetness only happens with the everyday investments that come with it. Your kid rarely sits down with you and says, "Look, mom, we have some free Quality Time now, so let's have a heart-to-heart about what's going on in my life." Instead, she usually confides in you whilst wolfing down the eggs and toast you just made for yourself, after wheedling you into ironing her favorite awful t-shirt.

So you want to savor the everyday things. It's important, especially if you have a family.

On the other hand, many of us have put off the things we always wanted to do until we were more financially stable, or until we had more time, or until the kids were grown, or until work got less harried, or until we retired... and somehow, between all the everyday demands and the occasional crises and the economy, that Us Time never quite happened. So when our doctors suddenly inform us that it's unlikely that we're going to get to that imagined future, we realize that if we don't do it now, we are just never going to do it at all.

Do we take that little window between the time we learn of our impending doom and the time that we become bedridden to run around trying to do all the things we thought we'd get around to Some Day?

Well, it depends. Just because you are sick, you don't suddenly gain more time, fewer demands on your time and energy, or more money (see above)... so it may just not be possible to run around putting check marks on your Bucket List.

But if you can manage it, it can be very satisfying to go on that trip you always wanted to go on, to build that classic car you always wanted, to go up in an air balloon at sunrise, to see a Broadway Musical or go to Disneyland. If you can do these things in the company of someone who you love, it can be comforting - if bittersweet - to know that you are building a happy memory to sustain them when you are gone.

If you don't have kids, and if you have the resources, you can do both the everyday and the special Big Experience stuff at the same time. You can do laundry and argue with your spouse about proper handling of whites vs. colors and what constitutes a 'delicate' while traveling on exotic shores. Sounds like fun!

If you have the resources, but you are limited by the needs of kids or of an employer, then you can trade off between the comforts of 'normal life' and the satisfaction of experiencing some of those longed-for adventures and accomplishments.

I think that either would be the ideal, that combination of both the sweet mundane joys of everyday life and the ability to experience more of the outside world. I think if there is any possible way of arranging for both, it's worth the sacrifices that might be involved. I'm incredibly grateful to my mom and dad for making sacrifices in order to help me to do a bit of that while it was still possible. I suppose it would be stupid to say that I will never forget it, under the circumstances, but I do hope that they understand how much it has meant to me, and that it will bring them some comfort to be able to remember that in the future.

But if your resources are scant, as ours generally are, there is still a lot of satisfaction available in noting the beauty in a flying wedge of migrating geese, the lacy tracings of leafless branches against a steely winter sky, the sleepy twittering of finches at sunrise, the tender curve of a grandchild's cheek, the clean lines of a newly finished quilt or a nearly perfect golf shot. There is still joy to be celebrated in the graduation of a child from one stage of life to another, another family gathering peacefully managed, a career milestone accomplished, a new skill gained. There is still sweetness in the small moments with friends, family, and children that can be caught between all the everyday demands and crises of 'normal life'... and between the not-so-everyday demands and crises of a dwindling life.

So what do we do when faced with a terminal illness? We make do with what we've got. Life is rarely ideal, and certainly the end of life is even less so. Knowing at a visceral level how very limited our own time is really going to be sharpens our vision to some degree. It forces us to prioritize. It forces us to pay attention whenever we can, and to appreciate the small things as well as the grand. If we are lucky, we can experience both in our last days or years.