Just around the corner to the light of day

Can one have a mid-life crisis with CF? Many years ago, no one with CF lived long enough to have one. And clearly, barring any miracle of science and new lungs, I’ve passed my midlife point. Does “late-life crisis” sound more accurate?

Whatever I’m having is a realization that the days ahead of me are fewer in number compared to the days behind me. It’s causing me to reflect upon my past, the mistakes I’ve made, and what I cannot do anymore – the doors closed to me. It’s about quality of life, how to hold on to what I have – my job and a life of not allowing CF to overwhelm me – for as long as I can. And I wonder: Is there still time for me to create something spectacular in my life?

But the disease is playing by its own rules these days and my life as I know it is similar to holding two handfuls of sand in the wind. Everything is temporary, but I’d rather CF not speed up the process.

I once heard a parent of a CFer speak at a golf tournament fundraiser. He spoke about how he wanted to see his daughter grow up to be 18, to graduate high school. That was it. If he could just have that he would be happy. But when she reached 18 he wanted more. And at 21, he wanted more. And so on. I can relate. I never expected to be here this long. And I set my own age goals in life. Now I set them by my daughter’s clock, to live to see her graduate high school. But now I fear that may be too aggressive. It’s 10 years out. Should I be thinking in shorter chunks of time?

And then there is that hurdle of blood I have to jump.

The current unpredictability of the bleeding is a bitch. I’m gun shy now and almost afraid to write about it. Each cough feels like it’s going to be blood and send me back to hell. I know it’ll return; the doctors missed the bleeder. I just want to make it two more weeks while my daughter is on vacation and we can enjoy the holidays. Then, I can bleed. But how can I function with this time bomb ticking? What if I’m with my daughter in a public place and it breaks loose?

I just had streaking. Can I make it through tonight?

Two more weeks. It seems like such a long time. I don’t want to speed it up because it’s vacation. However, I look forward to the pressure being released if I do make it. Then, I’ll probably want one more week and another and another after that. Isn’t that the way it always is?

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4 thoughts on “Just around the corner to the light of day

  1. no one knows the time, method or date of our exit from this plane of existence…..cars crash, planes fall from the sky, buses over turn, trains derail……the only thing that keeps us from a perpetual state of fear and hiding in a hole is faith. Faith that its out of our hands and faith that things will go exactly as they should….whether its the way we want them to go or not. Sending lots of faith and hope and love your way. Enjoy your vacation with your little one. much love ~j

    • Sending you and the girls much happiness this holiday season. And clear lungs and fun Santa presents. And in 2011, I hope the right guy finds his way to you, as you’re a diamond who loves football. It doesn’t get better than that.

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