Coming to grips with reality
Victor will finally have to go on oxygen.
For a 63-year-old cystic fibrosis patient, thats probably not a startling statement. But for me, it spells the real beginning of the finale. And I am rocked to my foundations.
I just read an article about how CF patients die. I was surprised to learn that most patients with CF are optimistic. They have survived so many lung infections and exacerbations that they think they are invincible. That’s what I hear from Victor constantly: “You may die before me,” and “I’ve beaten CF.”
But he hasn’t. CF wins. Every time.
A couple of months ago, Victor invited me to go with him to his semi-annual doctor appointment, to meet his new doctor. It was the first time in 24 years that he has ever asked me to accompany him to any kind of medical appointment. Perhaps it was a subtle message that I should get to know THIS doctor because she would be the one with whom I would have the most contact, the most intimacy. Perhaps he knows this will be his last doctor. I don’t know.
Heck, he usually pops up after lung infections and is right as rain. This time could be the same. But it feels less likely. He has never quite made it back to full health after that scary hospital stay 18 months ago. His appetite never returned to normal. He looks more drawn and pale. And though his terrible jokes and groaning sense of humor have been restored, he’s just not as “bright” as he was before.
When I think about the future without him, well, I can’t think about it. Though we usually go our separate ways, live our independent lives, we depend on each other more than both of us realize. I’m out of town right now and I think he misses me more because he’s on IV antibiotics. He feels more helpless, although he would hate to hear me say it.
I’ve made a decision to go home early tomorrow, surprise him and spend more of the weekend with him. I know he will be grateful. I will be relieved to be with him. And then we are going to do some estate planning. Because when the time does come, I don’t want to think about money and bills. I want to be with him, fully. I want to grieve fully. Oh my god. I can’t think about this any longer. It makes me crazy.
There is no moral to this story, no message of hope or inspiration. For once, I’m just telling you what’s going on. Not for sympathy, but for honesty. It’s just what is.