Epistle 1: Learning and living in the belly of the beast
June 12, 2015
A question upon leaving the school was, “How is your reentry?” I am blessed with many venues in my life where the questions we are asking at school can stay alive with Kindred Spirits.
Serious labor, however, is required to case manage the 24/7 care for my father, whose mind has unwound over the past few years. He wants to spend the rest of his days in the house where he has lived by himself for 40 years.
Finding and retaining quality people is tedious and it must be done from Berkeley for Los Angeles. The learnings have been immense, but the service is only a small payback to a person from whom I have learned about both handwork and the workings of the soul.
Upon my return home, work on his behalf was calming.
Now a storm is roiling in a different sea.
At 90, my mother is living alone in Los Angeles. Upon returning June 1 from a cruise to Hawaii with my sister, she found her old back was hurting. She got an x-ray, some pain meds, and went home to hibernate.
By Friday, it was obvious that she had also caught a severe bug on the trip. She was coughing up blood and went to the ER. Based on those and other symptoms, my oldest son and I flew down to Los Angeles.
We saw her on Friday night in the hospital and she was stable. By Saturday at 9:30 a.m. she was acutely ill, surrounded by clamoring medical professionals with different machines whirling and beeping. The doctor came to me and asked about her "wishes.” There had been many discussions about her death and dying; she was clear about dying at home and without life-saving extremes.
After outlining to the doctor which "life-saving" interventions were OK and which were not, I elbowed my way in to tell my mother what was about to be wrought upon her. She was trembling, naked and vulnerable to numerous strangers, and her eyes were filled with confusion and fear. I was filled with the enormity of the Circle of Life, for she had looked into my eyes and comforted me when I was rudely forced from the briny somnolence of her womb some 63 year ago.
The decision to keep her alive with some extreme measures was informed by her wish to die at home and by my hope that her family in other states could get here prior to what seemed like her impending death. By 10:00 p.m. that same day, everyone had shown up and had a moment with her in the ICU. Overnight, Mom had rallied: four to five body variables which had been fluctuating wildly were within normal limits. She began barking out orders...
For the next four days, I lived with my mother in the hospital.
Being present with you as a scholar for Steven's practice and having devoured his other material all provided a bit of a road map for me. The hospital is an abrupt, dehumanizing, and devouring monster. The resources which are consumed in support of the individual life are staggering. There I was, in the belly of the beast. How I practiced being human was an anecdote to succumbing to not being present.
The hardest thing is to try not to do anything. The experience is like one of those woven straw finger traps - strong movements, pulling or poking, are likely to keep you in the trap. The trace of the death-phobic language is everywhere, the cheerleading, the positive future tense, "You look great,” "We will be doing this or that in the future,” pain management - over and over again.
Rebuking this insanity at every turn is impossible, for it is so big, so dominating. So I would breathe deeply to calibrate my urge say something. It is obvious I was needed there, but how? Over and over, I think and act on behalf of eloquence, discernment, courtesy, hospitality.
I attempted to translate language as means to conjure up some vestige of a "good death.” Talk of village, of ancestors, of grief, and of the circle of life slipped into my interactions. Asking about the "stories" of the medical personnel I encountered was a prelude to interactions grounded in their humanity.
It was nonstop for four days. Moments of humanity were frequent, but hard to string together. I have embraced every opportunity to be broken open. I have, in fact, sought them out. Being aware that telling a story will evoke my grief implores me to tell one to anyone who will listen so that we might sorrow together.
Crying, sobbing, telling her story - all are practices which are allowing me to stay present. And all of you - your faces still fresh from our magical time together, our stumbling at village making, the stories, and our crying - all have given me resolve to proceed as if a good death, while not defined, is worth pursuing.
Here are two stories among the many, though different, that seem worthy of telling.
Her pastor came in for a second time on Tuesday. He was talking about her going home and reassuring her, as many have, that “people graduate from hospice.” I was wincing. Then in came the cardiac surgeon, whom my mom adores, as he had "saved her" from a medical error he in fact had made. He said, "Why are you going into hospice? You look great. Hospice encourages giving up, and you should look into palliative care.”
“Here it was,” I thought. The old purveyor of eternal life with the new one...toe to toe! My mother spoke for herself, reiterating her desire for hospice. The surgeon stuck around for 10 minutes, and, though less direct, still adamant about her not "giving up.”
After this encounter with the surgeon, we were all dazed. The pastor told a story which seemed to have a crack in the monotheistic party line. I asked my mother if "we should give him the book?” She nodded.
I took her copy of “Die Wise” and handed it to the pastor outside her room. I introduced the author as being a graduate of Harvard Divinity School. He asked, "When did he go there? I graduated in '82.” I said Stephen graduated more like in the early 70s. Then I said, "He was an apprentice to a man named Brother Blue." The pastor’s eyes lit up and he smiled broadly. "I know Blue." I cried when he left; the little connections mean so much.
The other experience was totally devastating.
The first morning after coming home, she and I were alone. She tells my her diaper is wet and wants it changed. I proceed as gently and tenderly as possible to change her. During this, she vomits on me in a coughing fit. Staying in the circle-of-life practice, I look into her terrified eyes and say, "How many times did I vomit on you?" By then we both are sobbing.
This moment explodes with uncontrollable grief as she asks for me to wipe her while she is being changed. With a warm washcloth, I gently pat her widespread legs. I remind her that this was the position in which she gave birth to me, and that, in fact, she was doing so right then. The moment stood timeless in our sorrow.
She has now been home for 48 hours.
The future is uncertain. She has severe pneumonia, which has necessitated her using oxygen. She has congestive heart failure and her back continues to hurt. However, she will die at home. The challenges with hospice, with my siblings, and with the immense village of people who clamor to see her are less daunting then those of being in the belly of the beast. We are entering into a time of great mystery.
There are two things I need from you:
Firstly, carpe diem. The request I am about to make is counterintuitive and unusual. Resist the temptation to send me your thoughts or sorrowing about my situation. I know you care, and my ability to carry on here in Los Angeles is predicated by the time we have spent learning together and all that entails. Use that time and intention to reach out to someone in your own life, to whom you have not talked recently, to someone whose death would leave you wanting one more chance to talk with them.
Secondly, join my mother, Elizabeth Lukas, in giving a five-star rating to Stephen's book “Die Wise” on Amazon.
Full of grief and tears and knowing you are there,
Brian Lukas