Near-Illness Experiences

2017 April 21

When most people think of sickness, they think of a person who is sick or has an illness, as if the sickness is something that one individual possesses.  Caregivers can’t help but understand sickness differently than most others.  While most people think sickness is only about what happens to one person’s body, our repeated exposure to the illness experience changes us as we are constantly reminded that . . .

We aren’t always in control.  Only when we spend time with and near those who are sick, do we know that the body’s voice—aches, pains, discomfort, suffering—can’t be ignored.  Sickness reminds us that it works on its own schedule—not ours.  Our calendars are full of appointments and meetings and to-do lists that we set up when we could plan out our futures based on availability.  But our loved one’s illness doesn’t care what we had planned for tomorrow.  It can’t be postponed until we can mesh our calendars.

Whether brief or permanent, near-illness experiences require us to look in the mirror and see ourselves differently than we might have ever looked at our ourselves before.  Spending time near sickness means never being able to forget that there are forces at play beyond our will and desires.  Care, up close, prevents us from believing that we can—and should—do whatever we want, whenever we want.

We are constantly humbled because we know that sickness eventually finds us all—regardless of our size, strength, income, or background.  Humility is not a space most others inhabit on a daily basis but for those of us who spend time near illness, we can’t help but notice what most others overlook.  Near illness, life appears fragile.  We see so clearly what can go wrong and find it hard to let go of this truth. Appointments can be missed. Dreams can be interrupted. Schedules turned upside down. Habits broken.

When near the sights and sounds of our loved one’s discomfort, we are affected too—often finding ourselves in a state of perpetual unease.

We don’t feel like reading. We don’t feel like watching television. We aren’t comfortable with the lights on. We aren’t satisfied when the lights are off.  We don’t feel like talking. We can’t sleep at night. We are tired during the day.  In a world that’s always on, being near illness can make us feel off, refocusing our attention to the functioning of the limits of the body in ways that inspire respect, fear, and reverence.

We need others.  When we are near healthy bodies, we want an audience to display ourselves, our talents, to remind others—and ourselves—that we are important, worthwhile, funny, and desirable.

When we are near illness, something drastic and disruptive occurs.  We don’t want others to remind us that we are worthy, we need others to remind us that we are not alone because the suffering of those we care for has the incredible capacity to exaggerate our isolation.

We are the witnesses that hear and comfort our loved ones when they can’t present themselves in ways that make others feel more comfortable.  As witnesses to physical authenticity—the kind of authenticity no one talks about—we need to know we are not alone.  We comfort our loved ones with our presence by assuring them that our care exists without conditions.  We reassure them that they can close their eyes and know they will wake up with us near.  But we need reassurance too because our witnessing means that we are often left unprotected from our own doubts and fears.

Sickness and care are so interwoven that to untangle one from the other would render both meaningless.  Sickness without care is unbearable.  Care without vulnerability has no purpose. Too often, we think of people as sick or well, caregiver or cared for—exaggerating the differences between our ill loved ones and us.  We care for people who are being remade by their illness and in the process, we are changed.  Illness can’t be quarantined to bodies alone, it becomes a part of our relationship as care reminds us of what most others too quickly forget: we can’t help but see ourselves in those we care for just as our loved ones can’t help see themselves in us.  For those of us who have had near-illness experiences, we know that illness can’t ever be understood by biology alone—it’s also a relational experience that constantly reminds us of truths we can never forget—even if we want to.  

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