Illness and Mortality

Something necessary about life is that it shows up where death is not.  The anticipation of death can be liberating because it illuminates remaining possibilities for life.  Foreboding death concentrates the seemingly endless series of tomorrows into the finite number of todays now in view.

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Stigma: Marks of Difference

Visible signs of illness such as oxygen equipment, wheelchairs, and baldness all have a way of drawing curiosity.  But with learned politeness not to discuss these things, a social tension can arise resulting in real obstacles for ill people.  Physicians and healthy acquaintances alike run the risk of pigeonholing visibly ill people into one or another assumed set of characteristics and disabilities.

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Relationships and healing

While some friends disappear due to not knowing what to say and others overcompensate, many relationships thrive through the opportunity for community occasioned by illness. Regardless, illness almost always impacts not only the sick individual, but her entire squad as well.

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Phenomenology of illness

A dysfunctioning lung impacts not just a person's breath but possibly her whole world.  So attention to particular ways people relate to the world can help us all to better understand how illness transfigures someone's whole life.

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Illness Narratives

By telling her illness story, an ill person not only reclaims her identity but also creates a narrative that helps put her world back together. Arthur Frank calls ill people “wounded storytellers” to minimize victimhood and instead emphasize activity. He says, “The ill person who turns illness into story transforms fate into experience; the disease that sets the body apart from others becomes, in the story, the common bond of suffering that joins bodies in their shared vulnerability.”[7]

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Healing is a choice

Healing is a choice.  Having a chronic illness can feel like you are losing control over everything in your life.  Your body and mind are being attacked by your own body. I can choose to respond with love and compassion to the circumstance or respond with anger, separation, fear and hate.

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On Resilience

When we shift our attention away from all that illness has taken from us, this allows space for the possibilities still present. For ill people, looking back might make us nostalgic for what we once were. Looking forward might be scary and uncertain. So ill people have these two reasons to embrace the flowing present.

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Narrative Dimensions

Narrative dimensions  advances a culture of caring by helping people discover and express their personally unique experience of health and illness. We promote personal narrative, self awareness, authenticity, and resiliency to enrich the lives of all those touched by illness, including patients, caregivers, and health care professionals.

Our primary program is the Living Well With Illness Workshop, a half-day workshop for people with all types of chronic illnesses who want to gain perspective on the ways chronic illness has changed their lives and how they can improve their ability to adapt. This program is based on the work of British philosopher and author Havi Carel who has found great benefit from the some of these themes for her own struggle with a rare, severe lung condition.               

Our team of facilitators includes Janet Greenhut, M.D., a preventive medicine specialist in Ann Arbor Michigan; Idelle Hammond-Sass, certified Open Studio Process creative expression facilitator, and our CEO, Ryan Hart. Ryan is a philosophically trained cancer survivor. In 2010  I was diagnosed with bone cancer in my jaw . After a year of chemo and surgery, he returned to his life as a student athlete on the baseball team. But after a few years it was back. More of Ryan’s story can be found at his online open cancer story-telling platform,

“This time, I needed a highly specialized cancer hospital with world-class surgeons to get out of a possibly fatal situation. The surgery was relatively successful, but when I continued treatment with that institution, there was a big difference between my treatment there and my previous experience with Children’s hospital where the team knew of the strange sores I managed with chemo, the certain tactics need to avoid chemo sickness, and the intricacies of the case history in general. So while this highly specialized hospital had the technology and skill I needed to survive, my everyday, first-person, experience felt less involved medically. Something in me instinctively withdrew from this, in feeling that something was missing.”

-Ryan Hart

What we’re talking about here is the particular insight of a patient’s first-experience of a disease. With this wave of precision medicine, it’s becoming more and more clear that the same exact disease and diagnosis shows up in incredibly individual ways from one person to the next. It seems that the distinct character of an individual’s illness experience can only be found from within the ill person’s first-person viewpoint of it.  

Well, this inspired him to begin piecing together an organization fueling this work of addressing the gap between various attitudes toward illness.

Narrative Dimensions furthers the human flourishing of the various perspectives on health and illness--that’s patients, practitioners, and caregivers alike. People whose lives have been impacted by illness will have the chance to take advantage of time and space to reflect on the meaning of their illness for their lives.

We are proud to have conducted a few workshops...they have truly been amazing experiences. Still, that’s only about a fifth of the impact we look to have in 2018.. We have a long way to go but we are excited for the opportunity to tackle the challenge!

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