I lost a productive life by the age of 40 when I could no longer work with metastatic breast cancer.Â But Iâ€™ve unexpectedly won at survival with metastatic disease â€“ 20+ years.
We lose.Â And we donâ€™t know how to deal with losing.Â Society doesnâ€™t teach us how to be losers, only winners, though I donâ€™t know if thatâ€™s done well either.Â So we become refuse or refuse to live fully.Â When we no longer fit in, we are taken or thrown out.
I see societyâ€™s outcasts at the hospital â€“ old people, sick people, poor people, drunk and stoned people, mentally ill people, disabled people.Â At the oncology center thereâ€™s a mix of folks who are just visiting and those whoâ€™ve been damned to a shadow existence.
I ask myself, what if joy were free for the taking?Â What if love, purpose, presence, engagement, absorption could grace our dwindling days?Â What if we each knew what we had to contribute to the whole and got on with it?Â What if, instead of â€œkilling timeâ€, we escape cultural time constraints and live fully for however long or short a time is granted to us?
Thinking about time in Illnessland, I pulled out Good Days, Bad Days: The Self in Chronic Illness and Time by Kathy Charmaz. Charmaz teaches sociology at a local college, so her book is a bit academic, a bit accessible.Â She explores many important topics. One that resonates with me this morning is how illness can throw our lives into chaos, while wellness can give us a sense of control, mastery.Â Yet so many life events lead to chaos.Â What we really need/want is what she calls autonomy â€“ constructing independent choices and actions based on reasoning.
Iâ€™m serious. I donâ€™t believe time (or life or spirit or love or joy) enjoys being broken and measured.Â I donâ€™t believe most of us want to live this wayâ€¦but we keep on doing it until life interrupts us.Â
A new child, childhood, nature observation, illness, madness, sleep/dreams, mystical experience, artistic absorption, love, old age, dementia, and death all disprove our current cultural time system.
Visit Stephanie’s blog at: www.mylifeline.org/stephaniesugars.Â
She frequently explores death and disability, with her internal refections as part of a broad social and cutural context.Â
Stephanie says, “I began writing as a way of keeping family and friends updated about my medical condition. . . Iâ€™ve consciously been preparing to die.Â And am surprised and amazed to find myself alive in 2013. . . I argue that there is a place called Cancerland that borders Illnessland.Â Living here, like living in Wonderland, requires learning about a new place with its attendant terrain, language, time system, characters, challenges, symptoms and feeling states.” ÂSHARE