It’s a new year, already. Time sure flies! The last few months of 2017 were ridiculously busy. When I received the e-mail reminding me of this article, my first instinctual response was, “I don’t have time to write!” But therein lies my topic. I’d like to ponder the topic of time for those with cystic fibrosis (CF) and its relationship to spirit.

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Time is the only thing we have no technology to stop or change. We cannot push the pause button; the clock ticks forward, the calendar page turns, no matter what. We adults over 40 see this, each time we look in the mirror! And yet, all of us have 24 hours to a day. How do we make the most of the time we have?

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I remember one of the first product slogans for the CF drug Pulmozyme ™. It was “Time Well Spent.” The idea was the time it took to do your treatment was an investment in the future that you’d have because this drug worked. Isn’t this the great irony of life with CF? Doing so many things for our health takes so much time, but is supposed to give us more time.

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Let’s ponder the typical “normal” life many of us have. We sleep, we wake and prepare for our day, eat, maybe commute, then we engage in some daily purpose – whether it’s school, work, caregiving or self-care, or a creative or social endeavor, then we finish our day, return home, eat, prepare for the next day and go to sleep. Most of us with CF have to pack in treatments and numerous other tasks to take care of our health. CF is a crash course in time management. We learn to adapt by multi-tasking and “saving time” where we can. It’s a hard life. Where do we find the space in our schedules to allow real breathing room?
Added to the “things to do” list is the larger sense of time. People with cystic fibrosis are bonded by a recognition of the preciousness of time. We ask ourselves, “How much more time do I have? How long will this body last until it breaks down?” We want to treasure the time that we do have. This reality may be difficult to absorb, but it can also help us live intentionally and deliberately. But this time pressure can also lead to a sense of urgency.

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In modern life, we are often at war with time. Poet John O’Donohue says, “Stress is a perverted relationship to time.” Time becomes a bully, for example, when we see an e-mail that says: “Urgent: Respond Immediately.” Having too much to do and not enough time is the sure way of triggering a stress response. My gut stops, my muscles tense, my heart races, my ribcage hyper-inflates. Stress leads to exhaustion. Exhaustion can lead to exacerbations, hemoptysis, blood sugar imbalances, rejection and so on. In essence, stress can kill me. Pushing time can kill.

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CF has molded in me a lifestyle pattern – the desire to do it all, to live life fully and not give up any opportunity. I know others with CF who feel like they have to pack 80 years into 40. I have had countless extraordinary life experiences because of this philosophy. But at 45, my relationship to time is changing. I realize this pace is not how time is meant to be experienced. There are times when I haven’t had a moment of free time with such a packed schedule. I miss quiet time. Sitting on the couch, talking to a friend on the phone. My high-paced life has formed a negative thought habit – that I was “wasting time” just chilling. But what is wasting time? Seeing a film more than once? Opening junk mail? Staring at the wall?

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Time is an interesting thing. It is constant, but inside our minds, it speeds up or slows down. It can be wide, drawn-out, spacious in times of say, a boring hospital stay or waiting in the waiting room for someone to come out of a transplant surgery. It can seem like an instant, like when you are caught up in a phenomenal show and 90 minutes flies by, or when they start the propofol drip before surgery and the next thing you know you’re awake and it’s over. At the transplant games, I often dread a swim race for months, but in what seems like a split second, it’s over. Grief distorts time as well. In the midst of acute grief, time passes like molasses; the past dominates and the future doesn’t exist. Then suddenly, a year seems like a flash and then it seems like a decade.

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There are two types of time. Chronos time is linear, chronological time, like the hands of the clock ticking forward. It is measurable and predictable. We have a meeting at 3 p.m. that lasts an hour. We have 35 minutes to commute to work. The medication will be delivered in three days. That is the kind of time we are accustomed to in the modern world. There is another kind of time as well, one that’s closer to the spirit. Kairos time is time that flows and is full of possibility. It is experienced time that is lost with positive distraction. In the world of spirit, time behaves differently. It is quality time with friends, and carries a nostalgic feeling. Five minutes may seem like an eternity when you are intimate with a loved one, or caught up writing a poem or painting an image. The sense of time slows and transforms in kairos time. Kairos time is healing. I believe our spirits are meant to live in kairos time. To experience time mindfully, heartfully and to be present with what we have and what we are given. I’d like 2018 to be the year I choose to spend my days immersed in more kairos time.

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I have grown up with the mantra, “I want more time.” Now, I’m middle aged, grateful, but realize I have to have inner and outward symmetry when it comes to time. I have to relax around time, not take it so seriously and allow it to flow. I have to make choices on how to best use my time – to prioritize, triage or even cross off things that I won’t have time for – ever. Time with family, friends, caring for my body and enjoying life are worthwhile. I have to surrender to the reality of certain “time sinks,” like calling insurance and fighting insurance for denial of medications. I have to take the time to check my blood sugar or floss or order meds. But when given a choice, I have to decide some things are not worth my time. I have to not let others take my time if I don’t want them to. And most of all, I have to grieve giving up some things I love which I don’t have time for.

When modern life — work, traffic, appointments, deadlines — demands a high-paced rhythm, I have decided there is a way to make peace internally with time. I find myself talking to myself, saying, “Oh well, I tried to get that done. I will let that go,” or “I can do only so much. My mind wants to do that, but it’s all good right now.” This inner dialogue helps me control my time below the surface. I try to create more space, stillness, just thinking differently about time. In the midst of the rat race, I can sit mentally still and just be in the present. As the German mystic Meister Eckhart said, “There’s a place in the soul that neither time nor space can touch.”

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Our time alive is full of possibility. So, how will you be with your time? Ferrari time or kairos time? By allowing our spirits to choreograph our own time, we can invite a new relationship with time. We can transform.

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Isabel is 45 and has CF. She lives in Redwood City, CA, with her husband, Andrew. Her email is: isabear27@gmail.com