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.
You both are in my heart, very honest, very raw, very tender…..
Thanks Marr…had a long talk with Victor tonight and he said the window could be as long as two years but that’s a guess. Could be much longer. Could be next month. But he (and I) have recognized that things will never be the same. Only worse. Physically. But we can still smile and he’s still in bed with me at night…for now.
Good for you for taking time to make it count. I unexpectedly lost my first husband in a military accident many years ago. One thing I never regret was taking the time when we were together to really make the most of that shared time. It has helped as time went on for me. None of use know when time will come to an end, but some of us have a sense of time preciousness with loved ones thru certain circumstances. Here is to thinking of you and Victor. Hugs Marr
drooling, yes; planning… er, I know I’m worth it and all that on one hand; my recent Master’s degree with all its expense is on the other. I can probably get the days off, but I could just work and re-read “Confessions”.
Oh yes… I have changed it twice and just signed the contract with the Hampton for FEb 7-8 at Brier Creek, near the airport. Are you planning to attend?? Would LOVE to see you!
Yes, one “day” at a time is too long! BTW is the “Reboot” next month still planned?
Thanks Becky — life will be different from now on, that’s certain. But I am trying to take this moment by moment. And in THIS moment, he’s smiling and at work and today is the last day for IV antibiotics YAY.
Thank you for sharing. My “old man” (husband Gary) is 10 years older than I. I get it. Hugs.