(Zinnia does her thing Wednesday at Bishop Maginn High School with Sue Silverstein and students)
Tomorrow is an important day in my journey with Susan Popper, and in her journey through life. We’ve scheduled a meeting with her brother, doctors, caseworker, and palliative care officials at the hospital.
She’s asked me to be present as one of her two Patient Advocates. The other, Donna, will be on speakerphone from New Jersey. Susan has also requested that Zinnia come so that she will be there. Zinnia lightens things up wherever she goes.
Patient advocates have been given signed permission to access a patient’s medical condition and information. As a matter of ethics, I don’t talk to the doctors directly unless Susan is present. But I can be in the room when they are talking and presenting the information.
Susan called me earlier today to tell me of a surprise visit from a doctor – she didn’t know which one – to say to her that tests have found signs of failing kidneys. That is hard news.
Susan said she had been advised in the meeting to consider hospice care, and she said she had accepted that suggestion and was writing down some notes about how she would live from now on.
I was surprised and puzzled by the conversation. If Susan remembers it correctly, it means there is no plausible treatment for her to have.
Yesterday Susan was in a different place, and I suggested she might want to wait until the meeting Thursday to figure out what is going on and what she ultimately decides to do. She couldn’t remember who the doctor was.
No rush, I said. She agreed.
I worry that Susan is understandably overwhelmed and is quick to agree to things people tell her. But the meeting tomorrow should resolve several things.
If her kidneys are failing, along with her liver, and her cancer is spreading, and her illnesses are not curable, then I hope she will consider hospice care.
But I want to make sure she clearly understands what she is agreeing to, and then back off.
I told her today – she asked – that hospice is not about dying, hospice doesn’t kill people, some people are under hospice care for a long time. Like most people, hospice was a kind of dread word to her, she stayed away from it.
Hospice means the patient has declined medical treatment and needs to be made comfortable and free of pain, as nature takes its course. In other words, to be permitted to die naturally if that is the course of the illness.
It is an article of faith in hospice that most people wait far too long to call for hospice care. For Susan, the time would be right. The issue is quality of life, not cures.
Susan said she was trying to figure out how hospice would affect her treatment, and I said as softly as I could that hospice meant there would be no more treatment, except for pain and comfort.
Hospice treats suffering, not cancer or liver disease.
It permits people to die with some freedom and comfort. I’m sure this will all be made clear to her and her family (her brother is here) at the meeting tomorrow. If her kidneys are in trouble, this is an entirely new medical reality.
So tomorrow will be a big day in the life of my friend Susan. I see our friendship has returned to normal, and we are easy and open with one another. I am glad she has me to talk to when she needs to talk.
I am learning to listen, and sometimes am even good at itit.
A hospice social worker once told me that the specter of death is liberating; the masks come off.
I lost mine some years ago.
Maria asked me if this experience with Susan was painful, and I said no, in a curious way I love this work, it is essential work. I believe I am learning to do it well, and I feel alive and necessary when I am helping people at the edge of life, from hospice to the Mansion.
Death is sad, but it also can be beautiful and uplifting.
I don’t know why this is so, that I am drawn to this work, except that it helps me to heal the broken parts of me, and opens up the paths to empathy.
I leave my ego and troubles behind, and for a while, live in a different realm.
And life and death is a very precious subject to write about, I won’t lie about that.
I should do what good I can do in this world, and this is what I can do. I don’t love watching people get sick or die, but I do like being engaged with life.
Sometimes, I told Maria, I feel I am a spiritual warrior.
What does that mean?
It is far away from being a soldier, Mark Nepo writes, it is more about the sincerity and authenticity with which a soul faces itself in a daily way.
It is about marshaling the courage to be authentic, which keeps me strong enough to withstand the heartbreak through which enlightenment can occur. It about honoring how real-life flows around me and helps me to get the most out of living.
The goal, wrote Nepo, is to mix our hands in the earth, not to stay clean.