Texture of time

For individuals and families living with chronic illness, the experience of the present is likely to acquire a texture much different from what prevailed before diagnosis. Illness disrupts the large and small tides and rhythms that we hold onto amid the flux of our lives. Our lifelong patterns of sleeping, waking, eating, and defecation are often disturbed. This is no minor matter. Moods and emotions, fatigue and morale are closely linked to the assurance of the regular satisfaction of our most basic needs.

Interrogation and torture, or periods of battle or natural disaster that interrupt, threaten, or deprive individuals of their accustomed schedules, often produce powerful and lasting effects. Indeed, as patients have long complained, the strict routines of waking, feeding, and temperature-taking in many hospitals can produce, even if not intentionally, a state of passivity, disorientation and dependency.  

The structure of time within which  our families live may be rendered uninhabitable by chronic illness. No longer does the expected follow the anticipated, as it did before illness arrived on the scene. And when the rhythms of our lives are altered, the very nature of our existence can become problematic. The “I” of “Who am I?” is no longer the same. The activities during which time passed quickly and through which aspects of our identities were affirmed—a favorite hobby, the play of sex, cooking for a party—now take “forever,” if they are enjoyed at all.

Not only may those of us with illness suffer from the stretching of time, but those with whom we share our  lives are often deprived as well. Our  family members of all ages may be called upon to rise to the occasion or to take on certain roles before they ordinarily would have been expected to—or after.

Most of us  take for granted a normal progression of the life cycle. We expect that increasing accomplishments and engagements in the world will gradually give way, over some seventy or eighty years, to lessening involvement with its desires and demands and a coming to terms with death. As a consequence of illness, the timelines for meeting the challenges or confronting the crises that characterize personal, family, and cultural stages and cycles of all kinds are frequently extended, compromised, neglected, or seen as completely unattainable.

We may not think about the patterns of time in which we live until we get sick. It may seem that we  have both more and less time. It takes me more time to get simple things done, and I feel like I probably have less time to do what I really care about, because this illness is progressive. And one hell of a nuisance. I wake up when everyone else is sleeping, and I’m just so exhausted when the rest of the family is ready to go. My body’s getting worse, and I have more time to think about it. There are fewer places where I can go, because it takes me longer to get there. I once had goals and plans. And I was proud of that fact. I wasn’t just a guy who did stuff on the spur of the moment. I did it because it made sense in terms of what I wanted to accomplish for my family and for myself. But without those goals, or at least the possibility of getting them, I’m not sure who I am or who I’m supposed to be.”

The time frame in which we  live  is wrenched out of shape. What is included on the canvas of the present changes. The future may lap at the margin of the next twenty-four hours, or even closer, whereas before illness brushed one’s life it could extend out some months or even years away.

The attempt to live “one day at a time” serves different motives and different functions as illness and circumstances change. For the same each of us and ur families, it can be either a defense against ongoing discomfort or a style of coping that momentarily relieves suffering. At other times, it may help deflect thoughts about anticipated losses or inspire people to focus on using the present moment as richly as possible. For one individual, “I take it one day at a time” is a proud announcement. For someone else, it is a weary sigh of resignation. And as I meditate each day. I may notice that both thoughts are present and called my own.


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