"Life is Real: Writing the Final Chapters" is a blog The Oklahoman provided to help us have a conversation about what happens to an individual and their family and friends when one has been told there is no hope for a long life.
It is not an easy conversation, but who among us would not like to do it well when that time comes for us or for someone we love?
In addition to Jim, I have other friends who are making a similar journey. From all of them I have learned a great deal - and they have given me permission to share what I have learned with you. I will not use their names because what we are discovering is the honesty of what they are experiencing is difficult for family members and close friends to hear.
What happens when an illness such as cancer is pronounced terminal is the patient is immediately set apart, seen as different and separated from those who are healthy. At that point, relationships with ones they love most begin to change and will keep changing.
When there are times of remission, after undergoing chemotherapy and radiation treatments, and the patient begins to get back into a normal routine - no longer in bed, shops for groceries or drinks coffee at the office, friends and family assume that because they don’t “look sick,” they are not sick.
At this point, the patient begins to carry a secret identity: Who knows that only last week they completed treatments? Who knows about the constant pain or about the itchy scar under the shirt? Who gives a second thought to the wig that covers a bald head? Thus they manage the grind of daily living while their illness looms over everything - shadowing, trivializing and obscuring their reality.
Patients become so used to going it alone they develop defenses, evasions and flippant remarks to release them from the obligation to engage in the subject of illness when it arises. I’ve heard my friend Jim Chastain talk about how early on he learned to weave humor into his story because “people can’t take too much of your pain at one time.”
Others have told me the same thing. They are not really free to express their true feelings because it alarms people or makes them uncomfortable. Have you ever heard an ill person praised for how well they expressed fear or grief or were openly sad?
None of us should be surprised then that Jim’s family has found living in a fish bowl for the entire world to see uncomfortable, unsettling and invasive. They have made a significant contribution to this dialogue, but now they have asked to pull back a bit from the spotlight – and we will honor that.
Jim, however, is willing to stay vulnerable to you, the readers and let you continue to look over his shoulder as this chapter of his life unfolds. You can do this by visiting the NewsOK blog
or Jim’s personal blog
I trust you will continue to join us in the conversation. What will help most will be your honesty, your own fears, and anything you may have learned on your own journey through illness that might help someone else know that what they are thinking or feeling or doing – under the circumstances – is normal.