Reflecting on end-of-life issues 
4/6/23
Martina

I think what matters most is believing that what is meant to happen will happen, and that I must trust my sons Sebastian and Andy to do what they think is best at the time.  I have signed and delivered the 5 Wishes form to my doctor, saying not to prolong my life if there is not a reasonable hope for health and wellness, but simply dwindling down as end-organ damage becomes more permanent.  I made Sebastian the chief decision-maker because I think he is less likely to jump to conclusions, and less likely to make a unilateral decision.  I want you all  to take what the doctors say into consideration, with respect.  

I think it would be hard for me to have much enjoyment of life if I am bedridden, or go blind, or am completely deaf, as well as frail and movement-restricted.  I want to be able to feel the sun on my face and be outside, and to see and smell flowers.  If I am not conscious and not likely to regain full consciousness, let me go.  

Please do not park me in front of a tv.  Let me have silence or classical music, and let me be in the sunshine as much as possible.  
Read my poem, THE END, which I am posting below.  

I also think it is hard to know how much energy I would have, as life is waning, and whether I would want to try to keep breathing, if it is an uphill battle to breathe.  I know I do not want to be permanently on a respirator, so if there is not much hope of getting off, please don’t start it.

What I think I can say, is that it seems reasonable to try to help when there is sufficient energy to maintain a steady-state, in which I know and love my family and loved-ones.  But as we get older and more frail, being able to preserve that well-being of the advanced elderly person’s life is less possible.  I want to admit that, and take that into account, in offering you guidelines about the decisions you have to make.   

If I am otherwise healthy, treat my bladder infection or lung infection.  But if there are already some signs of advancing kidney or liver or heart damage, or the lungs are already in a compromised state, beyond just infection, I am ok with you letting me go gently. 

The concept of dying a normal death, of being allowed to pass quietly and peacefully, is harder to do, once we start trying to slow the chronic losses.  Sometimes it starts small and then there is more and more; a cascade of problems which are all getting worse.  It is ok to stop.

I want to be loved, to be cared for gently, to be kept clean and as comfortable as possible.  I want to be fed and groomed, if I can’t do it myself.  But once I cannot absorb nutrition, don’t feed me, or put a tube down to help get food into my stomach.  There is a lot of data that people at end-of-life are not hungry as the body is shutting down and dying.  

If I can still see, help me see something beautiful;  look out the window, see the flowers, the ocean, the hills.  If I can hear, play the classical music I love;  Bach, Chopin, Palestrina.  

I would rather die in a dignified way, a little early, than be carried to the end by extraordinary interventions which take me away from home, put me into a medical setting, with people who don’t know me.  I would like to spare those resources for the young, who are more able to bounce back.

I want Sebastian and Andy to take care of themselves, too, and not be sleepless or depressed or anxious about me.  I believe God loves me and that I will be falling into the loving arms of God, so it is not a bad thing for me to die.  I will always love you!  

Please forgive me for whatever I have done to hurt you, and know that I am sorry.  

“The challenge before us is this: to treasure and preserve the independence given to us and learn to integrate it in an all-embracing interdependence”.
BR. DAVID STEINDL-RAST

 The End

If I die before the end of the story,

please finish it for me.

My legs may creak and fold,

lightning rushing through frayed wiring

sending sparks of pain,

but let my breath last

until the last task is done.

Let me hold the baby

as one holds pilgrims of the future,

with hope like shooting stars

and winter waves at high tide.

Let me learn to trust

irregular heartbeats

and slow thoughts,

let whispering

remind me of singing.

Give me bread

bring me wine

and let it be communion.

Touch me sweetly, tenderly,

If my legs fail, hold me up

so I can see

the sunlit sea.

MN 2022

Today was the funeral for Nate Lawrence. He has been Sebastian’s house-mate for 12 years. He has also been a dear friend to Andy, and to me. The Pacific Garden Chapel was full. The first piece was a musical composition by his brother Dan and two musical friends, a singer with a great voice, and a harp player– Irish harp. The piece was accompanied by underwater footage of Nate’s, which was gorgeous, and went perfectly with the gentle harp notes, and piano riffs, in a song about this peaceful place. There was also a video clip of Nate’s hands on a guitar, playing a riff, which was super-poignant. The film was extensive, and earlier we also saw the footage of rock-crawling, and other fun activities, and how much Nate was out in nature, seeing the beauty of the world.

I feel about him like he was another son of mine. I spoke about the time he asked me to stitch his finger, which had a very deep gash in it, and was bleeding profusely, after a fishing adventure. I had gotten a small kit, in case I needed to suture something like this, and I did have a tiny bit of local anesthesia. So I did it. It was deep, and we cleaned it well, and I gave him some local, and put 3 stitches in, pretty deep, to try to snugly reduce the swelling, and maybe bind a lacerated small arteriole. He didn’t even wince, he just said “thank you.” So many of these young men didn’t have insurance, and it would have been expensive to go to the E.R. I worried, but it did heal ok. He and Sebastian loved to spear fish off the Point at Asilomar. Once we had a BBQ right there, with the guys still half-in their wetsuits. Freshest fish in the world!

As I think it over now, I believe he was a Druid. He was a magical person, with the leprechaunish sense of humor, super-intelligent, and intuitively gifted. He taught himself to play the guitar, and he figured out all the best pieces of equipment needed for any endeavor, and got them for himself and Sebastian. He was so deeply connected to nature, and immersed himself in it. He was a great friend and counselor to many of the guys who were in their circle of friends, and always ready to lend a hand. He had a big soul, a deep soul. I feel that he did all that work to heal after that terrible crippling accident 3 years ago, and he made it, and was moving into a better future. And then this happened. We will miss him forever.

I am a member of FCNL, the Friends Committee on National Legislation. They have been trying for 100 years to help us get to a more just and more peaceful society and government. This month’s newsletter has an interesting article on what is a Solidarity Economy. This is sharing, not forced, ways to build sustainable economic practices. Examples are cooperatives, land trusts, credit unions, peer lending, mutual aid, community-led economic development, barter, commmunity-supported agriculture, and fair trade products. They give several examples, including in Atlanta a community land trust which aims to build affordable housing. They say that sometimes because this is not a power-grab, even in an authoritarian state, these practices can work to buffer the community needs.

In our town, we have Second Harvest food bank, which does a tremendous job of getting fresh produce to the less fortunate. We have the Grey Bears, who do a fantastic job of repurposing and recycling, and helping others, especially the elderly, find less expensive options.

The idea is to prioritize people and the planet over endless profit and growth. Some of you saw my posts about Prop 1, and how much hope I have had, that it would pass. It passed by 1%, and it is going to provide mental health clinics and acute care mental health beds for psychotic patients, in California. It will not solve all the homeless’ needs, but it is a good start, for the hardest things to help, which are the mental health needs, which have been underserved and in crisis for over 50 years. My next big hope came when I read about a big project which is happening in central Los Angeles, which is a huge building project, part of which is to help increase housing for the homeless. But also, it is going to be aesthetically pleasing, and make what is currently a maniacal eyesore and nightmare to drive through, into what looks like the center of a city which cares about building community. I want to again recommend that people read the book by Victoria Sweet MD, “God’s Hotel”. It is about the planning and building of the last big charity hospital, in San Francisco. What Dr. Sweet shows is that people who have had no place to be, and who “don’t fit in” can learn to fit in if the community makes it possible for them to find a niche. This is about widening the circle.

Some mentally ill people will never be able to hold a job; it is too difficult for some people to sustain the daily energy and task-oriented focus. Some cannot easily communicate and cooperate in a team of workers. But they can do SOME thing, and we can help find out what it is. Some people can work sometimes, and take time off when they are not able to focus or do a job. People are not machines, and we have to make it possible for many different skills to be offered for the good of the whole community. If we are thinking in terms of a Solidarity Economy, this becomes more clear. We can try to find ways to build healthy and stable communities, if we are not focusing only on the governmental support and budget. As you know, I believe we need universal healthcare, and that will mean using taxpayers’ money, but I want it to be spent efficiently, with the 3% overhead of Medicare, not the insurance industry’s 15%. There are ways we can expand our reach, if we widen the lens with which we “see” the problems we need to solve.

I love my garden. Over the years I have had to see what can stand the summer heat, the winter wet and cold, and also the deer and other plant-eating animals. I have worked at it, and it is now doing great, especially with the succulents, and the Solanum, and the main flowering plants in pots. The cala lilies and coral geraniums are the mainstay of the garden, but I have to put things in pots to protect the roots and keep them up on the deck away from rabbits, and gophers. So today I came home so happy with a bunch of new additions for refurbishing my pots!

Mary groans and leans toward Joseph

as he lifts her off the donkey.

Gratefully she stretches her aching limbs on the straw

feeling again the urgency of her body,

a bell tolling deep inside announcing

the coming of the Child;

summoning Him to this world.

Mary closes her eyes and enters her inner garden,

full of shafts of sunlight melting through green canopies,

morning- fresh and shining with dew as in Eden.

In this place of blooming, blessed with birdsong,

she begins to open as a rose, petal by petal,

infinitely tender, aching with stretch

as the heavy door of the garden opens.

And then beads of sweat line her upper lip

as she pushes Him through the canyon of herself,

letting Him go,

Helping Him come into the world.

Opening wide his eyes,

He breathes air and gasps and cries.

Aching in all her limbs

she gathers Him to her, swaddling him with blankets.

As a rose closes, her body recedes from birth,

pain ebbs away, and wonder wells up to fill her body.

Her eyes drown in the Child’s face,

and she collapses into the smell of newborn skin

and the rhythm of His breathing.

It seems the stars are hugging the hills,

and choirs of seraphim light the rim of sky,

shepherds hear the music.

Astronomers are filled with rare excitement

at the planets holding hands and gazing down.

Joseph curls his body to shelter mother and child,

and the animals stand close to keep them warm.

from Rose Windows in the Cathedral of Mary, 1994,

by Martina Nicholson MD

Breathing Peace by Cristina M. R. Norcross

Dear friends AND FAMILY,

Here is what I wrote after our last talk on Death

Reflecting on end-of-life issues 

4/6/23

Martina

I think what matters most is believing that what is meant to happen will happen, and that I must trust my sons Sebastian and Andy to do what they think is best at the time.  I have signed and delivered the 5 Wishes form to my doctor, saying not to prolong my life if there is not a reasonable hope for health and wellness, but simply dwindling down as end-organ damage becomes more permanent.  I made Sebastian the chief decision-maker because I think he is less likely to jump to conclusions, and less likely to make a unilateral decision.  I want you all  to take what the doctors say into consideration, with respect.  

I think it would be hard for me to have much enjoyment of life if I am bedridden, or go blind, or am completely deaf.  I want to be able to feel the sun on my face and be outside, and to see and smell flowers.  If I am not conscious and not likely to regain full consciousness, let me go.  

Please do not park me in front of a tv.  Let me have silence or classical music, and let me be in the sunshine as much as possible.  

Read my poem, which I am posting below.  

I also think it is hard to know how much energy I would have, as life is waning, and whether I would want to try to keep breathing, if it is an uphill battle to breathe.  I know I do not want to be permanently on a respirator, so if there is not much hope of getting off, please don’t start it.

What I think I can say, is that it seems reasonable to try to help when there is sufficient energy to maintain a steady-state, in which I know and love my family and loved-ones.  But as we get older and more frail, being able to preserve that well-being of the advanced elderly person’s life is less possible.  I want to admit that, and take that into account, in offering you guidelines about the decisions you have to make.   

If I am otherwise healthy, treat my bladder infection or lung infection.  But if there are already some signs of advancing kidney or liver or heart damage, or the lungs are already in a compromised state, beyond just infection, I am ok with you letting me go gently. 

The concept of dying a normal death, of being allowed to pass quietly and peacefully, is harder to do, once we start trying to slow the chronic losses.  Sometimes it starts small and then there is more and more, a cascade of problems which are all getting worse.  It is ok to stop.

I want to be loved, to be cared for gently, to be kept clean and as comfortable as possible.  I want to be fed and groomed, if I can’t do it myself.  But once I cannot absorb nutrition, don’t feed me, or put a tube down to help get food into my stomach.  There is a lot of data that people at end-of-life are not hungry as the body is shutting down and dying.  

If I can still see, help me see something beautiful;  look out the window, see the flowers, the ocean, the hills.  If I can hear, play the classical music I love;  Bach, Chopin, Palestrina.  

I would rather die in a dignified way, a little early, than be carried to the end by extraordinary interventions which take me away from home, put me into a medical setting, with people who don’t know me.  

I want Sebastian and Andy to take care of themselves, too, and not be sleepless or depressed or anxious about me.  I believe God loves me and that I will be falling into the loving arms of God, so it is not a bad thing for me to die.  I will always love you!  

Please forgive me for whatever I have done to hurt you, and know that I am sorry.

2 POEMS:

WHEN I AM DYING

 When I am Dying

When I am losing all I love,

when it is almost over,

I will still have the sense of smell,

and I will remember the lightness of your touch.

I hope you will light beeswax candles by my bed.

I hope there will be laundry hanging outside my window.

I hope for bread baking in the kitchen, close enough for

me to smell it.

I want you to bring me a bowl of water to put my fingers into.

I want to be wrapped in baby flannel,

and I want you to rub my hands and feet with lotion.

Will you promise to bring me flowers that smell good:

gardenias and roses and lavender?

After my eyesight is gone, will you read to me?

When my throat is dry and choked with dust,

will you sing for me?

Will you keep changing the music, and sometimes

play Chopin?

When all else is lost, I will still be listening

to your voice, and hearing you say “I love you.”

Even if you are in the next room,

or farther than that,

I will believe it is possible

that you will still be saying it.

Martina Nicholson

THE END

If I die before the end of the story,
please finish it for me.
My legs may creak and fold,
lightning rushing through frayed wiring
sending sparks of pain,
but let my breath last
until the last task is done.
Let me hold the baby
as one holds pilgrims of the future,
with hope like shooting stars
and winter waves at high tide.
Let me learn to trust
irregular heartbeats
and slow thoughts,
let whispering
remind me of singing.

Give me bread
bring me wine
and let it be communion.
Touch me sweetly, tenderly,
If my legs fail, hold me up
so I can see
the sunlit sea.

MN 2022

As the obliterative bombing goes on in Gaza, I have become more and more distraught.  I trained in a Jewish hospital, Maimonides, in Brooklyn, which was named for the great rabbinical doctor Maimonides.  The doctors I trained with were amazing Jewish doctors, and they took God into consideration in all their deliberations about care for patients, and their personal responsibility, so I loved and counted on their wisdom and deep sense of ethics.  I have continued to have wonderful Jewish doctor friends, and they have been a mainstay of my spiritual journey.  I also have had dear and wonderful Moslem friends in medicine, and I have loved them and their love of God, also.   One of my anesthesiologist friends took his frail, elderly father on a Haj.  This took an enormous chunk out of the prime of his working life.  He did it with joy and kindness.    So this is just so terrible, watching the genocide in Gaza, in which hospitals are being bombed, and medical personnel is being killed, along with the patients.  70% of the deaths are noncombatants,  women and children.  It is unthinkable, and it is a war crime.

I wanted to share with you all that in my agony over this, I  got to participate in a really beautiful interfaith service on Sunday, here in Santa Cruz, sponsored by the interfaith community called The Tent of Abraham, Sarah and Hagar.    Here is my summary of it—

Yesterday we had an interfaith prayer service for PEACE in our town, which was simply for people wanting to pray together, stretching beyond our own tradition, wanting not to vilify the others. People of many different faiths were part of it, and Moslems, Jews and Christian spiritual leaders spoke respectfully, modeling for us this conversation. After praying in silence and breathing, we broke into small groups at each small table. Our task was to share 3 questions, and ask each of the 5 people in our group to respond for a few minutes; then when they had said their say, finish with “I have spoken.” Then the rest of the small group around the table would respond to their share with “We have heard you.” This method was very powerful. We each felt deeply listened to, and heard. Cross talk was not allowed. People shared their experience of hurt, trauma, shame, grief, fear. We spoke about what we are doing to take care of ourselves. We ended with speaking about what shifted, what gives us hope.  

I feel this template of small group conversation, and the attempt to reach for common human feelings and goals, was a breakthrough. We were grappling with letting go of dogma, speaking of what matters to each of us, how each of us feels, the complexities in our families and communities which are making this harder, and how we long for peace and understanding. Interestingly, we were from different cultural and religious upbringings, and it was a time to be able to reach across, out of the comfort zone of our cultural attachments, toward our human connectedness. It was a wonderful time, and people’s faces reflected the joy of real conversations, and being able to share that hope for peace and understanding. We ended with spiritual leaders from each tradition offering prayers for peace, and then we sang “Imagine” from John Lennon. The singing pastor who played the song introduced it by saying that John Lennon also was responding, with this song, to the hope to reach beyond dogmas and beliefs, to what we all share as suffering humanity, hoping for peace.

The Tent of Abraham also co-sponsors with the people of Sangha Shantivanam, (a Christian-based interfaith group) our interfaith New Year’s eve event, which is also a miracle of respectful prayer for peace, with representatives of every religion and none, in Santa Cruz for the past 20 years. It is amazing that they had been planning this get-together before the events in Israel and Gaza happened. Because of it, many more people came than they had expected, but the shared experience of this kind of prayer over the past 2 decades made it more meaningful, and honest and trustworthy.

For me, to be in a community of people whose understanding of God is much more cosmic and universal, is a great relief. All my adult life, I have tried to broaden my language about faith, to be able to include all who are human in this way, not to exclude the best of who we are. Because we are trying to move past 100,000 years of human tribalism, and small-minded ideas of God, we are not always well-received or understood. I was able to breathe, after this event, and to sleep at night. I went to mass this morning, and there was an amazing reading from the Book of Wisdom, which of course is also part of the Torah. It talked about the souls being called home to God, and it said “They will shine. Like sparks in rubble…”. This was a perfect line for me to read, as Gaza is being bombed to rubble, and the Palestinians are being systematically eradicated. To be with others who feel the trauma of this in their own bodies was a relief. To be prayerful, recognizing the complexities was also a relief. Not hearing blaming and shaming language, belittling or vilifying the others, was a relief. Trying to breathe deeply through the pain, until we could regain our own peace, was also a gift. I felt the presence and the gift of our meditation practice here, as well as the AlAnon training to not give comments or opinions to another person’s share. Simply trying to do deep listening in prayerful presence, was very healing.To me, what we are doing here is trying to overcome an eon of human tribalism and violence, everything in human history which reflects belief in a small and vindictive tribal God, which always names the neighboring tribe as “enemy”. As you know, I am a person who believes in the vision of Pierre Teihard de Chardin, who was a Jesuit priest and paleontologist who worked in China. He embraced evolution and science, and described a cosmic, universal Christ who calls us into the Divine love, the divine milieu, from a perspective of eons of evolution, billions of stars, huge cosmic forces in the universe. Because of his vision, I still have hope, that humanity is going to move forward into what he called “the noosphere”– a cooperative human organism aimed at the good of all humanity and the planet– a “greater good”. We stand on the edge of what seems an abyss, but it is akin to the moment when inorganic molecules morphed, became organic and complex organisms capable of life.

With love, martina