just back from narrative medicine rounds – a wonderful monthly gathering of people from a variety of health and literary disciplines seeking to understand and learn from stories (both their patients’ and their own) in encounters of health, illness, medicine and healing. an author named alix kates shulman read from her memoir called to love what is: a marriage transformed.
to be honest, i sometimes avoid stories of illness, particularly chronic disease in the elderly, in my non-work time. it’s just a bit too close to how i spend my professional hours. yet listening tonight helped me. i particularly appreciated the authentic and important admonition to honor the individuality of those who have suffered cognitive losses. ms shulman spoke passionately of her experience and conviction that her husband, despite his traumatic brain injury, remains uniquely himself. his personality, though drastically altered, is still his own.
it somehow illuminated something i have been trying to communicate and keep before me in interactions with one of my most challenging patients – a very sick man who clearly feels helpless and frustrated, but is extremely adept at shutting out anything and anyone that might ease his suffering. he resists so strongly any encroachment upon emotional territory, which has so far kept me from saying this aloud to him, but i find myself internally saying, i know you weren’t always like this. i understand that you have not always been weak and ill and dying. i understand that the part of yourself that is truly you is capable and competent, incisive and independent. i see that there is more to you than a weakened man hardly able to turn in bed, too scared to know how close to death he is.
and yet – it is unsurprising that he struggles to accept this. a major illness must always bring a crisis of personality; perhaps the approach of death even more so. (sidenote – fascinating. the first definition, parts a, b, and c, crisis, defined by merriam-webster online – http://www.merriam-webster.com/dictionary/crisis – are framed in terms of physical and emotional events of human life. the second definition is literary, and only the third pertains to situations.)
so – the work inherent in illness is responding to an attack, adjusting to a radical change, navigating a turning point. there is always a before and after quality, whether in a chronic or acute illness, whether the “after” is positioned at a true end or at one of a thousand repeating endings. assimilating the experience and the consequences of illness means becoming a different person – a person possessing the new knowledge which has become necessary in the face of physical and emotional crises.
just yesterday i looked in on the blog of a college suitemate and found that what started as an account of funny anecdotes about her family now also includes an incredibly honest and beautiful account of the painful and disorienting experience of learning that one of her children has type I diabetes. you can find her at http://spannclan.blogspot.com/
i truly believe, and am beginning to learn to articulate, that the stories of illness, both told and heard, are a deep part of healing. finding a way (or many ways) into them is at least as important as any medication, treatment, or regimen of lifestyle change we can accept or offer. a story makes meaning, and finding meaning can help make us well. i don’t mean in a sense of finding a moral or a conclusion (though that may be what happens at times). rather, in recounting an experience, in giving it a shape, it becomes something that can be seen, approached, and understood, which in turn helps us to heal – whether we are those who heal, or those in need of healing.
it strikes me, while re-reading that sentence, that heal is both transitive – to heal another – and intransitive – to return to a healthy (or as m-w puts it, sound) state. there would be danger, clearly, in separating the two meanings. acknowledging the importance of our stories can also help keep them united.
