What’s next?

Perhaps it sounds strange to call my acute awareness of mortality a blessing, but it really is. One of the most important insights I’ve gained is that life is about choice. We don’t always think about it that way, though. We get busy with the everyday stuff – picking up the dry cleaning, going to the grocery store, buying a new sofa, answering email, feeding the dogs, going to work – and we forget that each of these mundane things is a choice. It’s easier to see see choice in the bigger decisions – Should I get married? What do I want to be when I grow up? Should I have a baby? People recently diagnosed with cancer or another potentially terminal condition usually get it. Theirs is an awakening of awareness – “What have I been doing with my life?” “What does it all mean?” And most importantly, “If this is it, what else would I rather be doing?” Here’s where I think the blessing comes in.

My take on living with a chronic illness, and thus regularly being reminded of my mortality is that I have come to see living as a process of choosing – given my circumstances, how can I live the best quality life possible? For me, the best quality life possible involves, spending time my terrifically supportive husband, my parents, and my friends, teaching, doing pottery, writing, loving on my border collies, and traveling. Especially traveling.

I was 14 when I took my first trip outside of the US. I went with my church choir on a tour of Jamaica. It must have been nerve wracking for my parents. But, I caught the travel bug and since then, either alone or with my husband, I been all over the world. I’ve traveled to Russia (when it was the Soviet Union), France, the Czech Republic, South Africa, Peru, Australia (where I lived for a year), and Turkey, New Zealand, Costa Rica to name a few –but this is not everywhere I want to go. Our next trip will probably be to Spain. I’m also planning to go back to Australia this summer to do some follow-up field research. There’s is something so invigorating about being in a place where you don’t know the language and everything is different. Everyday becomes an adventure, and sometimes a challenge – finding a place and foods to eat, exploring new places, meeting new people. There’s nothing like the existential reality check of travel.

My parents have gotten used to my desire to travel. My doctors have too. I used to worry less about how I would do my treatments on the road, but now planning for this aspect of my life is simply a part of getting things organized to pack. Is it a pain? Sure. Is it the worst thing ever? No. I talk with my CF doctor. If necessary, I do a pre-trip round of IV antibiotics to boost my resistance to catching a bug on the trip. I get my breathing treatment equipment and supplies together. Nebulizers and air compressors for inhalation treatments have gotten smaller, lighter and can now be powered with re-chargeable batteries. This summer will be the first time I’ve traveled with my Vest. In the past my husband has done back-clapping postural drainage. The newest question mark in my various health management strategies will be my insulin regimen. Like all travel, it’s a live and learn kind of thing, and it’s worth it.
How do I make it all work? I’ve always negotiated with my body – a tit for tat kind of bargining. If I do this, it will cost that. In high school, this went something like, get me through the semester or through prom and then I can be sick and go on IVs. Negotiating with the doctor went something like this too. More recently, these conversations are often on a more practical and unconscious scale. If I work twelve hours a day for seven days straight to meet a deadline and ignore the inevitable hunger pangs and wheezing, or, if I spend the weekend staying up late, having a drink, and enjoying the company of friends, I pay in fatigue and congestion. I’ll have to spend more time and energy paying attention to getting more sleep, taking in more calories, and doing things to get the gunk out of my lungs. It can sometimes take days, even weeks to get “caught up.” But, if I chose to go to bed at a reasonable hour, make time for the gym four times a week, eat plenty of healthy high-calorie foods, and take time on the weekends to rest, then I can do X, Y, and Z. Learning how to balance what I want and what my body needs is constant game of stratego, and I can’t say that I’ve perfected it. But, these are my choices to make.

In a way, these choices are about time – is this how I want to spend it?


2 Responses to “What’s next?”

  1. Clea Says:

    Dear Katherine,

    this blog is wonderful and I think it is important to read even for people not affected by CF. What you say about having a sense of mortality is a concept that applies to many people, perhaps not as urgently or forcibly, but often just as vividly.

    Not everyone has had the fortune of meeting you and admiring your strong personality and determination – which was evident to me long before I knew about your condition – but through this blog they’ll have the chance to witness it from afar and to be inspired by it, no matter their specific lot in life. Thank you for making this valuable effort.


  2. Robert Says:


    Thanks so much for sharing this blog. Your comments about choices are an incredible statement about living. I appreciate the choices you make and the life that you lead. To say your blog is a valuable testament to living actually seems trite – rather an incredible statement about what it means to be fully engaged with life, one wheeze, one choice, one travel adventure at a time.


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