EDITORIAL NOTE: To name this ship we are on together now for this final journey of mine, it was a close vote among Curiosity, Ronni's Ship of Friends and This End Up. It is the votes sent by email that put This End Up over the top by three votes, and so it is. I'm not sure how we're going to use the name of the boat yet but feel free to offer your suggestions.
The headline today is my new status: terminally ill. After knowing this for two-and-a-half weeks now, I still don't fully believe it. First of all, I feel as healthy as the best I have ever been. Nothing hurts. I have no symptoms. I can do anything I need to do.
Except for one thing: I have been disabused of that marvelous notion humans have all our lives of being the one immortal: you might die one day, but not me.
When I wake each morning, that seems to remain so. I lie there looking forward to the day, eager to get going, maybe reviewing a list in my head of things I need or want to do.
It's always been like that but now it doesn't last long enough for me to finish the list, as I am rudely interrupted recalling that I live in a different country now – the land of the terminally ill.
Isn't that a horrible phrase, “terminally ill.” It's too clinical, even industrial. It ignores the humanity of the life that will be extinguished and it sounds so imminent, as if I am already on the first bus out of here - a bus being driven, of course, by the grim reaper, hood in place and scythe in hand.
But that's not true of me. For awhile anyway, I've got some time. None of the doctors and nurses knows exactly how long in my case but, given some chemotherapy, six to eight months before symptoms begin to kick in has been mentioned.
Me? I take the prediction with some caution. The time could be shorter or it could be longer and since there is nothing I can do to affect the timing, the only rational choice for me is to carry on living.
Without, however, losing sight of the impending exit date. To ignore it would be absurd.
On the day I learned of my new status, some decisions came to me immediately. I've mentioned giving up the daily workout I've always despised, and now I get to eat all the ice cream and cheeses – my two favorite foods – as I want.
I explained in an earlier post that I have no bucket list and I am uninterested in them except for this thought that came to me three or four days ago: I want to go somewhere to spend time playing with a whole passel kittens – puppies would work too – you know how they climb all over you and lick your face and squeak and squeal and tumble around and make you laugh like a four-year-old.
Maybe more than once I want to do that before I go. I need to find somewhere near here that will allow it.
Another decision I made right away is that I will not keep my new status a secret. I proactively tell people whom I want to know or who need to know, and I will tell others as needs be.
That can turn out to be tricky.
Indeed, I need to avoid that barren phrase, “terminally ill,” because it sure does push people away. Even without it, few know what to say to a person whose days are officially numbered. Except for some.
Many years ago, when we were decades younger than we are now, a friend and I joked that if either of us ever had a terminal disease, the healthy one would interview the other to death.
As a matter of fact, she and I had a long phone call over the weekend. Sure enough, she asked a lot of questions and among all sorts of other topics, we talked about my new status, my predicament as it were, some of the details and we toyed with some of the unknowables, having a fine ol' time doing it.
Afterward, I was curious about what the internet says about talking with people who are dying.
The Mayo Clinic has a pretty good page about how to be with a loved one who is terminally ill. Some other online advice feels suspect to me: choose your words carefully, don't ask questions, talk about something other than cancer.
Huh? Just speak. I don't care what words you use. Ask any questions at all and god, at this point, certainly talk about cancer and dying all you want. I can't promise my responses will useful because I've never done this before and I'm still learning. But do say what you want to say.
The one big thing I don't want is advice about other treatments, getting second opinions and miracle cures. Too many of those have already arrived over the transom of my email account and so far, I have been polite to the writers.
But after a dozen or more of them, I'm done with politesse. If there were anything that could cure this cancer, the medical people who care for me work at a world-class cancer institute and they would know about it. If there were real miracle cures, believe me, they would not be a secret to anyone.
For as long as I can remember, I have been curious about dying. When I have explained myself through the years, I've said that I want to be awake, lucid, not drugged or in pain because I want to experience the event of dying as clearly as possible. It is the last great mystery of life and I don't want to miss it.
In knowing that, however, what I had never considered is the process of being terminally ill, the path leading up to that death.
This is a wholely different place from how we live before something like this happens. It changes everything. Not, perhaps, the acts of daily life (I don't intend to alter that much). Instead, it shades and colors everything in ways that are new to me.
I'm only just beginning to work with that and try to figure it out.