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Rabbi Chaya Gusfield

Rabbi Chaya Gusfield, Jewish Renewal, rabbi, spiritual director, chaplain

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Cancer Reflections

December 26, 2017
Filed Under: Cancer Reflections, Chaplain Reflections, Healing, Reflections on Love
5 Comments

Let’s Talk About Touch

I’m usually a hugger.  When I see people I haven’t seen for a while or I want to acknowledge someone in an openhearted way, I often will automatically reach for a hug.  Physical acknowledgement is usually perceived as a sign of warmth.  But not always.  In the last few years I have noticed that this automatic hug can actually cause harm or insult even though my intent is not to.

I learned an important lesson about touch through my work as a hospital chaplain because I often ask permission for the many ways that we interact: “May I visit for awhile?”  “May I sit down?”  “May I turn your tv down while we talk?”  Asking permission is a way of respecting the person’s autonomy.  This is especially important in a hospital where all day and night nurses, doctors, physical therapists, dietitians, custodians, or repair people walk into a patient’s room often without explicit permission, disturbing or poking the person in the process of delivering their care.  It’s important  people know they can say no to me, when they can’t say no to so many other providers.  I learned to ask someone if they are hand holders in prayer, or whether I can touch them.  I rarely offer a hug to patients or family members because they may feel pressured to say yes, but occasionally I sense that a sincere hug from a caring stranger at that moment would be appropriate and helpful.  In those rare situations I will ask permission and listen to their words and watch their body language for the answer.

When my partner was diagnosed with cancer I learned that unwelcomed touch could be a matter of life and death. She is immune compromised due to her ongoing chemo treatment even when she looks healthy.  What may be a simple illness like a bad cold could, for her, become a life threatening pneumonia. She avoids crowds where sick people and those who are about to get sick can be found.  We vet people for their state of health before they are invited over. We insist on people washing their hands before coming into the home. She prefers matinees where there is alternate seating if someone sits next to her who sounds sick.  Handshakes are even harder to avoid without feeling rude.  In response to an outstretched hand, my partner often offers a bow. Humans feel like walking germ carriers. That is a hard way to think about people, but it is her unfortunate reality.

The matter of touch became very real for me when I broke my elbow.  Without a sling signaling to people to be careful, I was scared of being bumped.  I tried to keep a safe distance for fear of being jostled.  As people approached, I would pull away. I noticed that some people were very loving and respectful, others puzzled, and many others pushed the boundaries. “What about a hug like this?”  “What about a virtual hug?” “I’m not sick”, “Why can’t you hug?”   It was so restful and caring when someone gave a kind look, put their hand on their heart, or bowed without asking any questions.  They assumed there was a good reason I pulled away.

There are other reasons uninvited touch can be harmful to someone: they may have a hidden injury or chronic pain, or they may be an abuse survivor where touch initiated by someone without their permission can be triggering. Recent revelations of widespread sexual harassment and the “Me Too” movement have also made many people wary of unwelcome touch. In addition, there are culturally specific norms about touch we may not all be aware of.  In order to be respectful we need to listen to people’s body language and accept all responses to an offer of physical touch without questioning it. Everyone gets to control their body.  For any reason.  We don’t need to understand or challenge them.

Sometimes we need a hug.  I remember walking home from work one day.  I was so sad from the state of the world, and had just spent the day serving a large family with a tragic trauma at the hospital.  I walked by where my hairdresser works. I knocked.  When she came to the door I just said, “I need a hug.” She said, “me too”.  We embraced without words, and then I went home.  A moment of mutual understanding, shared permission, and deep healing.

Each of us are on a continuum of touch-needs at any moment. I invite us all to find multiple ways to express our warmth to one another.  Through our eyes, gestures, words.  When invited, through loving hugs, handshakes, or handholding. This awareness of each person’s touch-needs requires us to deeply listen to the others’ body language as well as their words.

When I say I am not hugging today, or during flu season, please know that my heart still joins with yours.

July 23, 2017
Filed Under: Cancer Reflections, Grief Writings, Healing, Prayer
2 Comments

Are you angry at God?

I asked the young rabbi, “Are you angry at God?”.  He responded curtly that he wasn’t angry. “There is nothing between me and God. Nothing.  To be angry would mean we are in relationship. We are NOT in relationship.”  He and his wife had experienced the broken heartedness of many miscarriages. With his experiences came disbelief, isolation, and profound grief. He seemed beyond angry, but not at God. There was no God in his life.

As a rabbi, spiritual director and hospital chaplain, I often ask this same question of people who struggle to connect with their spiritual practices because of a new catastrophic diagnosis, a long difficult illness, a sudden death, a betrayal.  My hope in asking “are you angry at God?” is to help them explore some part of their own truth.  Maybe in so doing, they can find a path to walk at a time when no paths seem tolerable.

Recently I shared my sadness and exhaustion of what it is like to live with the profound uncertainty of our family’s future due to my partner’s incurable cancer diagnosis.  Due to the nature of her disease we have no map for what her disease progression will look like. We have many possible scenarios, none of which are reliably going to be her story.  I find this very unsettling to my spirit. A weight hovers over me, pressing down, often showing up as an uneasy despair.

My spiritual director asked me “are you angry at God?” and I didn’t know how to respond.  “Oy,” I thought, “this is the question I often ask!”

God isn’t responsible for my heartbreak or her diagnosis.  Therefore, I can’t be angry at God.  I feel God through experience. Hands in the soil nurturing plants. Cooking a nutritious meal for myself and for those I love. Being able to walk after an injury.  Surviving a close call.  A dream. Moving my bowels. Medicine that takes the headaches away.  The ocean and all that lives within it. Family of all kinds, those chosen and those I was born into. Torah. Watching a movie holding hands with my beloved on our double recliner.  A good night’s sleep. A nap in the middle of the day. A good argument. That’s where I experience God.

I have a path I walk while experiencing God. For today I put my hands in the soil, listen to newborn birds, sit in the quiet, study Torah with dear friends. The arms of the Mother gently walk with me.  I still have exhaustion and despair at times, but I am not angry at God.

July 9, 2017
Filed Under: Cancer Reflections, Healing
13 Comments

Reflections on Receiving Difficult News- One Family Member’s Perspective

 

My partner, Judith, had pain in her sinus cavity caused by a tumor called a plasmacytoma.  After her biopsy, her surgeon called Friday afternoon with the results.  She asked him to wait fifteen minutes until I could be home with her to get the news.  He had no flexibility and said he could speak either then or Monday. She chose to speak with him then on the phone, still alone. He confirmed that the tumor was cancer of an unknown type.  She hurried to the hospital to get more tests to learn what kind of cancer it was.  That was a really bad day.

Judith and I both work in the health care system.  I am a palliative and acute care chaplain and she is a physical therapist who worked in a managing chronic pain clinic for many years.  We thought we were prepared when we walked into the oncologist’s office several weeks after that phone call to hear the results of the bone marrow biopsy.  We hoped it wasn’t, but thought it likely was Multiple Myeloma (MM), an incurable rare blood cancer. Even so, the final diagnosis of MM that day was devastating for both of us. Our lives were changed forever.

I will never forget how alone we felt as we left that office, even though our dear friend accompanied us.  We both worked in that building, but we felt like we were on another planet, in a strange building, and had been left to die without food.  We were free falling without a net.  Nothing happened in that meeting that helped us feel otherwise.

Life continued during this time. We both lost a parent and grief became what we ate for breakfast.  I learned how to stop trying to control everything since I couldn’t control anything.

I have done a lot of thinking about the days we received the news that she had cancer, and then weeks later, her definitive diagnosis.  I wish it had been different and wonder how it affected the rest of our journey with cancer. I hope doctors who give difficult news as part of their work know or learn things they can do to make it a more human and compassionate experience.  Some suggestions:

  1. Always ask the person if they would like someone with them. Then listen to the answer.
  2. Convey that you understand in your kishkas/guts that what you are about to say is going to change our lives and everyone in our lives forever. Our lives will never be the same. Ever.
  3. Show compassion. How would you want your mother or daughter or brother to receive news like this? How would you want to receive life changing news?
  4. Notice your body. Are you distracted with movements like tapping of feet or pens? Are you making eye contact or looking at the computer? Are you being interrupted by staff or phone calls?
  5. Know it isn’t your fault.
  6. If you are sad, it’s ok to show it. It is normal to be sad at a time like this.
  7. Have Kleenex available. Allow for tears.  Stop talking. Don’t rush.
  8. Have someone you can talk with before and after you give news that will change our lives. You will need support.
  9. Make sure that we know the medical plan for what is next. Tests, an appointment, treatment.
  10. Offer resources to support us emotionally, spiritually, logistically that we can access soon. Don’t wait for us to ask.
  11. Offer information and resources to help us learn about our disease if we want it.
  12. Have a net available to catch us as we fall. We are falling, whether we show it or not.

What the net might look like:

  • Loving, compassionate silence
  • If you can’t pick us off the floor or mop up the river of tears, find someone who can. Right then.
  • The net could include words like:
    • “We will help you get through this.”
    • “We are with you all the way.”
    • “You are not alone.”
    • “Stay in touch, it’s ok to call with anything you need. I am guessing you may not remember much of what we talked about today, except that life has changed. Please call me with any questions or concerns before our next meeting.”
    • “You will need support. You are probably in shock right now. Our wonderful social worker or chaplain or nurse will call you in a few days. I highly recommend you meet with them. They can be very supportive and help you find the right kind of support for you and your family.”
    • “I can’t imagine how this must be for you. (and mean it)
    • “Is there something else I can support you or your family with right now?”

I am still hurt that no one from the medical staff held out a net for us on the day we received the catastrophic news.  No one to light the way.  No one to meet us where we were.  There was just a bomb, a word bomb.  We did find our way, by ourselves.  With a few wonderful chemo nurses, other patients who came before us guiding our way, and deeply committed friends, we made it through two bone marrow biopsies, one surgery, weeks of radiation, several different ongoing chemo treatments with steroids, several PET/CT scans, MRIs, weekly subcutaneous chemo shots, oral chemo, a harvest of stem cells, a stem cell transplant in the middle of a harsh winter, and numerous weekly or monthly blood draws.

There was the waiting and worrying. Every month the lab test told us whether the latest chemo treatment was working and how well.  Every few months there was a very hard decision about which treatment to switch to or which doctor or option to trust because there are a variety of opinions about how to treat Multiple Myeloma.  We struggled our way through the fatigue of knowing there is no cure. A deep fatigue. And a deep knowing that with life comes dying. Eventually.

We tried to weave our own net to help us out of the deep despair we often felt. We tried many different support groups, a writing group, the local Myeloma Support Group, cancer life coaching, outpatient Palliative Care, and were both involved with creative expression that only grief can give birth to. Judith wrote and performed several amazing one woman plays, and my writing and spiritual leadership was deeply affected by this experience.  There was always fear, and always love.

Some of what we tried was not right for us and some was lifesaving.   I can’t stop wondering if this journey would have been different if there had been a net from the very beginning. Or, maybe, nothing could have softened the fall.   But I will never know.

 

July 2, 2017
Filed Under: Cancer Reflections, Chaplain Reflections, Healing
2 Comments

The Popsicle

No one expected any moments of joy.

A long, difficult surgery with a catastrophic diagnosis.

Weeks of recovery with pain, feeding tube, nausea, fatigue, despair. Everyone in spiritual crisis, in chaos. Life as they understood it was no more.

There was crying, oceans of tears, disbelief.

And anger, so much anger. So much disappointment.

No one expected any moments of joy or laughter.

 

The popsicle: orange, cold, delicious

Moments of gigantic, colorful, fireworks. Even giggling.

A whisper of joy.

 

January 16, 2017
Filed Under: Cancer Reflections, Healing, Reflections on Love
3 Comments

Musings while caring for my beloved

Usually when I post on my blog, i have at least reviewed it several times, maybe even sat with a piece overnight to make sure it is appropriate.  (Whatever that means.) But now I am free writing.  I do this for myself.  Not for you.

Monday  Judith began her outpatient stem cell transplant (auto) for Multiple Myeloma at Stanford.  Why she made that decision and what she hopes for are another story.  (see her caring bridge site)  We rented a furnished apartment, organized 3 caregivers and a back up.  We were prepared. I was one of the 24/7 caregivers going to do half the week each week for a month, at least.  This was something we planned for a long time.

Boom, Monday morning I fear I might have a virus: low grade fever, a little drip, a mouth sore.  We decide to send me home.  In my sick bed I call and renegotiate times and coverage.  One of our back ups isn’t available.  Another of the three is sick.  We call upon two or three others  who show up.  We piece together good care.  The angels came to the rescue.

Boom, on Thursday, the third on our team went down with a bad cold.  I cried like a baby, wailing, the thought of Judith without her original team, and for her to even think about the plan.  I hated not getting to be together.  I got reports, did some facetime, called in during chemo and stem cell delivery and offered song, but i felt far away.  i wasn’t very sick, but it wasn’t the time to push it. With her white blood cells going down, we had to be meticulous not exposing her to any even possible virus.

By Wednesday Judith was sick with RSV and by Sunday she was asthmatic.  I arrived on Monday (A week later finally with no more symptoms) and now I am here.  Reassured to be together, but still being very careful.  It seems everywhere we look someone is sick, so we decide no touching and lots of handwashing.

The truth is, i think it’s harder for me to be here than to be at home staring at the walls, binge watching Nurse Jackie from the beginning checking my temperature every hour, worrying about her.  It’s harder to hear her gasping for air, afraid we might have to go into the ER, trying to sleep with one ear awake.

When I was home and not with her, I thought otherwise and I felt tortured.  Now that I am her caregiver and her white blood cells have disappeared, the enormity of the journey she is on and her vulnerability  could be overwhelming if I don’t remember our mantra.

LBT.  Let’s breathe together.  And then, i remember that this too shall pass, one way or the other….

 

August 1, 2016
Filed Under: Cancer Reflections, Chaplain Reflections, Grief Writings
2 Comments

Pill Bottles*

She reached for the bottle of pills.  She was calm, but shaky. They were a green blue capsule, somewhat beautious, surrealistic.

It was with awe that I imagined the power held within each gel cap, and even more when the contents of each of the 90 pills were stirred into a glass of juice and drunk quickly.  Very quickly.

A ritual was in order before she began, but somehow in all the excitement and planning we had forgotten to prepare the precious detail.  Years of ritual leadership and participation came in handy at that moment.

We called in the guides, those living and those dead, who would watch over the process from beginning to end, circling everyone in the room with protection and comfort, especially to be prepared for the unexpected.

Someone said, “we must set an intention”

“may it go smoothly”

Someone else said, “what about… “Let there be resolution and no fear.”

Someone responded, “Not yet right, fear is quite normal.”

“Let there be resolution. For all.”

That was it.

“Let there be resolution for all.”

After she drank the brew, she laid down in her cozy bed and dreamed.

Of courage, lifetimes, and the rhythm of the sea.

 

A ritual ending was needed.  So many times there had been melodies, songs, or candles with our rituals.

Today it was a ritual of silence. Of listening.

 

 

Joining with each breath as she let go of this most precious life.

Until all we heard was our own.

 

*The End of life Options Act went into law June 9, 2016. As someone working in Palliative Care, it is a common topic of conversation and study.  I hope that this law serves people and families with love.

July 26, 2016
Filed Under: Cancer Reflections, Healing
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How do I face my fears?

 

  • Distraction
  • Avoidance
  • Sharing about it ad nauseum
  • Writing about it
  • Crying, wringing hands
  • Tossing and turning
  • Coloring
  • Acceptance
  • Eat, Shop, Organize my closet
  • Blame and anger at others for creating the fear
  • Blame and anger at others for not alleviating the fear
  • Pretend there is no fear
  • Justify and glorify the fear
  • Distraction
  • How do you face your fears?

July 12, 2016
Filed Under: Cancer Reflections
5 Comments

Introductions-Writing for Healing Group

A large empty bowl,

Ceramic, with colors of blue, red, green, and cream, sits quietly in the center of the room. An introvert, not speaking, receiving each person’s introduction: story, hope, grief, recovery, fear, nervous laughter, inside jokes.

That which is spoken and that which is not.

This magnificent vessel has questions for us.

She asks, “Why are we introducing ourselves the way we do? By our cancer, treatment, years of survival, or relationship to cancer. It tells us so very little.  And so much.”

I yearn for a time when we gather in creativity where the wings of life are wide and filled with colors and sounds. Where there is no way to define us that words can hold.

We listen to the heart beat of each person.  A door opens.

 

I yearn for a time when the doctors read a chart and they see colors and sounds, images and stories. Their hearts are moved by a person’s truth.

They might read, “Judith, a 60 year old woman is very passionate about life and learning. She has helped many people in her life’s healing work.  When she touches you, it is like being immersed in a mikveh in an emerald river.  She loves to garden and be with her family.  When she is faced with needles, she sings to soothe herself.  A deeply spiritual person, her diagnosis was shocking. She is appropriately grieving the life she thought was hers.  She thrives when she has an oncologist who can support her make decisions of care that match the dreams of her life. She needs a doctor to make sure she has emotional and spiritual support, even if he can’t provide it himself.  She loves the ocean and dreams of living by the water someday.”

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