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Rabbi Chaya Gusfield

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

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Cancer Reflections

May 20, 2022
Filed Under: Cancer Reflections, Chaplain Reflections, Grief Writings, Healing
8 Comments

I Forgot to Breathe

 

I saw a gorgeous man at the café. He might have been 23.  I forgot I was 66 years old.

I also forgot I was a lesbian.

Oh, and that I was married.

I forgot when I run, my back can hurt for days, and sometimes my hips give in.  In my heart, I am skipping and running with the wind, the sky, the song.

I forgot how much my heart was holding, even before I went to work in the hospital every day.  I never forgot my beloved was being treated for a terminal illness.   I forgot to cry about the toll it took on my spirit, until I wasn’t holding the hands and comforting patients anymore.

I forgot I will need my beautiful baby as I age, to feed and dress me.

I forgot how much I crave the quiet and endless time without interruptions.

I forgot how much I miss you when I am alone.

I forgot to breathe. It might lead to crying, and then lead to wailing, which could lead to despair.

I forgot I can handle despair.

I forgot to listen to the trees and the plants.  I forgot their language.

I forgot a longer life means I might start to forget; turning off the stove, the names of people we know, and I can’t remember what else.

I forgot my password to my password file.

I forgot I have grey hair and my skin hangs.  I feel like I am 20. Ok, maybe 35.

I forgot I never really had that boyfriend I always knew I would marry.

I forgot the name of my hamster and turtle I loved as a child.

I forgot how to live without parents.

I forgot to breathe.

 

September 5, 2020
Filed Under: Cancer Reflections, Grief Writings, Healing, Reflections on Love
2 Comments

Standing

We always say I will be the one who will be standing when she dies.

There are so many assumptions in that statement:

  1. She will die.
  2. She will die before I do.
  3. I will be able to stand.

We think we know the path, the plan

Yet there have already been so many silences when we expected sound

So many sunny days during a torrential storm.

Then, of course, great pandemics,

Bringing a box of uncertainties.

How many pandemics does it take to remember we don’t know anything about standing?

June 20, 2020
Filed Under: Cancer Reflections, Chaplain Reflections, Grief Writings, Healing, Prayer, Reflections on Love
4 Comments

This is What the Living Do 

Dedicated to the memory of Annie Kennedy, may her memory be a blessing

This is what the living do. They crawl on their hands and knees over broken glass to live without you.  They sleep alone knowing you will never lay beside them again.  They make brownies but they just don’t taste good anymore.  This is what the living do.  They cling.  To whatever will stick: a pair of slippers, the blankets, a plant, the sound of birds.  They cling. Maybe this will help me, maybe that smell.  They cling. Waiting, hoping for a surprise. To hear your voice again or be comforted by the memory of your smile, or will it send them into a wailing that only the living can do when they miss their kin?

This is what the living do. They find ways to honor their dead, send them off to their place of no suffering. They find ways to remember. They hold on with a grasp that even a firefighter can’t undo.  They hold onto the photos and the smells of the snickerdoodles and the ukulele sounds.

This is what the living do. Sometimes they get so angry they aren’t sure the walls of their house will continue to stand, or they get so sad they never venture out of their bed, not even into the kitchen or the aliveness of the yard beaming with hope.  This is what the living do. They look at their texts hoping for a message from beyond.  Or some days all they do is tell stories to anyone who will listen, over and over again.

This is what the living do. They get rid of narcotics and the cancer drugs in a ritual of release.  The living stumble, crawl, dream their way to the refrigerator, the couch, and out the door to the garden.  They hold their family and love up their animals.  Until there is a sign from the Great One that helps them take the next step.

October 24, 2019
Filed Under: Cancer Reflections, Grief Writings, Healing, Reflections on Love
1 Comment

Come Write With Me: Monday Oct 28th in Oakland

It’s been an exciting past 5 weeks leading High Holy day services at Kol HaEmek in Redwood Valley with a broken arm! We are now gearing up for another creative event and hope to see you there. Please pass this on to friends of yours that may be interested.

As a part of the Reimagine End of Life Week in the Bay Area, on Mon, 10/28, Judith and I will facilitate a 2-hr creative writing workshop utilizing her solo performance “Welcome to the Cancer Cafe” to help attendees unearth new ideas and stories about life and death.

Kehilla Community Synagogue 1300 Grand Ave. Piedmont CA

6:30-8:30 PM

$15 suggested donation at the door. No one turned away for lack of funds.

*Please bring a journal*

Link to event at: https://letsreimagine.org/1754/cancer-cafe-and-writing-workshop.

ANOTHER OPPORTUNITY TO SEE JUDITH’S REVISED SHOW AT THE SF MARSH

PLEASE READ JUDITH’S LETTER BELOW:

Dear colleague, I am inviting you to my solo performance about the journey from being diagnosed with an incurable blood cancer through a stem cell transplant.

Many people respond to devastating news with creativity. I’m Judith C., a Physical Therapist diagnosed with Multiple Myeloma at age 58. I responded in just this way, and created “Welcome to the Cancer Cafe” to serve as a tool to educate medical providers, patients and caregivers.

Originally performed at various medical institutions and cancer support groups, the show garnered momentum and acclaim, and is now a part of the SF Marsh’s “Rising Series,” which showcases and offers rising talent with the possibility of a theatrical run.

Please join me in this excitement on 11/6 at 7:30pm! With your support (by attending and/or sharing the event with your communities), I may reach the attention of more facilities, institutions, schools, as well as the general community, for we all know that it is rare to meet someone who has not been touched by the impact of cancer in some manner.

*Show details are available at www.facebook.com/events/723557784736593.
*Begins promptly at 7:30pm. Run-time is approx. 60min.
*Tickets are $15. Please purchase tickets in advance here.
**All proceeds will be donated to the Charlotte Maxwell Clinic supporting and empowering low-income women with cancer.

With great respect,

Judith C.
 
Nov6CancerCafePerf.jpg

March 17, 2019
Filed Under: Cancer Reflections, Healing, Reflections on Love
8 Comments

Cause and Effect

Because she was my first love, I learned how to live with a broken heart,

And love again.

Because I learned how to love again,

I learned how to live.

Because I learned how to live,

I learned how to die.

Because I learned how to die,

I learned how to be with others who are dying.

Because I learned how to be with others who are dying,

I learned how to live each moment.

Because I learned how to live each moment,

I learned how to love again.

Because I learned how to love again,

I learned how to prepare for my beloved’s death.

Because I learned how to prepare for her death, I learned how to love even better.

October 8, 2018
Filed Under: Cancer Reflections, Chaplain Reflections, Healing, Reflections on Love
7 Comments

I’m Allergic to Being Called a “Caregiver”

When we attended our first Multiple Myeloma support group meeting, Judith had just received her catastrophic diagnosis of an incurable cancer. Everyone was introduced as either the “patient” or their “caregiver.”  I immediately responded, “I am family, I am Judith’s partner”. I wasn’t going to start off this cancer journey suddenly transforming our relationship from lifepartners to “patient/caregiver”.  I was new to this cancer experience, but this much I knew.

In the four years since that support group meeting I have consistently been referred to as the caregiver by professionals in the cancer world and I find it very limiting.   We are so much more to each other.  I prefer the concept of carepartnering or caresharing which values mutuality.

In all this time I have yearned to hear the professionals help us go beyond the labels of “patient/caregiver” and help us focus on the importance of our relationship surviving and thriving during challenging times affected by the cancer.

One way to rethink these unhelpful labels is to highlight what we each give to the other, and to focus on our mutuality of care even when there were periods when the medical or emotional issues of one of us takes center stage.

I get so much care from my partner Judith every day.  It could be insulting for me to call myself her caregiver.   We are both 62. In the four years since her diagnosis, Judith has had many emotional and physical care needs and so have I.  We have been there for each other through very trying times.  For example, Judith went through many tests that led to her diagnosis including a bone marrow biopsy. She left an important job and got on disability. She had surgery and radiation that required a period of recovery. She has been on almost continual chemotherapy often paired with strong steroids, troubling side effects and nearly impossible treatment decisions to make.  She has gone to many educational conferences, participated in support groups, had a stem cell transplant with months of recovery, experienced more side effects, had to make more decisions, and always worries if she made the right treatment choices.  Outside of the stem cell transplant, Judith has not been in the ICU or hospitalized and her care needs have been manageable by her, me and friends.

She has been a caresharer for her biological family.  When she was diagnosed, learning to pull back to focus on her own health was a huge challenge. One of her worst fears was realized when her own mother died during her stem cell transplant and then helping her grieving stepmother sell their apartment and move across country became the next ‘right thing to do’. She did her best to support all of this from long distance.

In these same four years, I cared for my elderly father who then died, made significant job and benefits changes, suffered a broken toe during Judith’s transplant, and later had a bad fall resulting in pain and treatment for almost a year. My work as a Palliative Care chaplain is emotionally and spiritually challenging and requires a lot of emotional support from Judith. Together we bought a new house and did a great deal of work getting it functional.  Through it all, we have cared for each other, even when it’s been temporarily uneven on either side.

I do anticipate there might be a time when Judith will require a lot more physical care.  But given our ages, I can imagine the ball swinging the other way, too.

I want the professionals and my community to remind us that we are love partners first and foremost. When the other’s care needs require center stage I hope to remember we are carepartners, giving and receiving, having given each other so much throughout our 24 years together.

Of course, cancer impacts family members very differently than the person with cancer.  There is great value in workshops, support groups, books and conferences that address the different needs that support people have.  My worries as a family member are different than hers as the person living with cancer, and I find it helpful to have space to be able to talk about that.  (In Judith’s support group they laughed about how they all preferred to be the one with cancer rather than the one witnessing the one with cancer.)

I find the identity as “caregiver” a barrier to healing and growing because it creates a separation between, rather than a connection.  To me, the word “caregiver” signifies a professional, underpaid angel that makes his or her living dedicated to the care of someone in need.  In some families there are enough family members to share those tasks.  When they do, they don’t usually give up their family identity.  Family care is given out of responsibility and love.  One family member often is identified as the main person who does the daily physical caregiving, however, they are first and foremost seen as family. motivated by love and/or responsibility. As a chaplain I witness family members and friends care for very sick people, many who will never recover mentally or physically.  It is the love they feel for their person that keeps them energized and committed.  Even when care is given out of duty, there seems to be an underlying sense of reciprocity.  “She deserves this, she cared me all those years.” “I love her, I want the best for her.”

I recognize that there are many people whose role caring for a parent, sibling, partner, child or friend is grueling when they are the only one caring for someone with great, 24 hours needs and the other person has little to no capacity to give back in any way.  At those times it may be even more important to identify the primary relationship that brought them to the choice to care for them even when it might not have felt like a choice.  Is it 60 years of marriage with a history of mutuality, or being an adult child caring for a parent who cared for them when they were young? Is it the value of doing the right thing when there is no one else?  I worry that if we see ourselves solely as the caregiver and do not feel any relationship with the other, then burn out is soon to follow.   And for some, the concept of carepartnering or caresharing may just not fit.

My mother had dementia and other health issues requiring a lot of care for many years, first in her home, and then in a nearby assisted living facility where she lived with my dad. One day I visited her with my dear friend who is a chaplain and a very smart, compassionate woman.  My mother was ailing, and we didn’t know it was about a month before she was going to die. My friend reflected with me that during the entire visit I was focused on caregiving tasks. “Can I get you some water? Are you cold?  Want some fruit, let me clean that up, etc.” She commented that I was caring, but she didn’t see me just be with her, to relate to my mom just as her daughter.  I regret that I only had a few weeks to try and reorient the way I was with her before she died.  I wish someone had pointed this out years earlier.

My hope is that when we walk into a doctor’s office or support group meeting, we won’t be narrowly defined as patient and caregiver.   There is so much more to both of us.  When it gets tougher with Judith’s health, I pray that I will always remember that we are partners of love first and that no matter what tasks need to be done, that I will remember we are carepartners for each other, to the very end of this life together.

May 3, 2018
Filed Under: Cancer Reflections, Grief Writings, Healing
2 Comments

Reflections on a Moment: Where is the Kleenex?

Her voice, her face, the nervous continual tapping on her clipboard is embedded in my mind, in my heartbreak. She was the “cold, disconnected doctor” who gave us the bad news.  There was little compassion, kindness, or awareness of who was sitting before her. Strictly business, only giving medical information that our shock could not let in at that time.  We only heard, “incurable cancer, radiation, chemo, probably many years, die of infection.”

“Isn’t this an oncology office?  Where is the Kleenex?” I barked through my tears looking around for something, anything, that would acknowledge the moment like only Kleenex can.

Several years after receiving the catastrophic news, the image of her has softened some in my mind. Unexpectedly my heart breaks for her and what she must have to find within herself to be the messenger of life-changing news every week, maybe even every day.  I see her pregnant belly.  I see a nursing mother.  I think about her baby.  I dream, “It must be hard to open your heart to the sweetness of your baby and then give bad news to people every day.”

I wonder, “When you look into the eyes of your baby, do you ever see a scared person faced with a terminal illness?  What do you feel?”  I just don’t know.  I can’t imagine it.

She didn’t share a touch, smile, or caring presence for me to be able to even guess.

March 8, 2018
Filed Under: Cancer Reflections, Chaplain Reflections, Grief Writings, Healing
2 Comments

Provider and Patient: Grief at work*

Three and a half years ago my partner, who worked as a physical therapist for Kaiser, received a catastrophic diagnosis of Multiple Myeloma, an incurable blood cancer.     At that time I was already working at Kaiser part-time as an acute care chaplain and soon after I joined the Palliative Care team.

Our lives changed overnight and everything associated with her diagnosis and treatment took place in the building I worked in and across the street: Bone marrow biopsy, scans, lab tests, surgery, radiation, chemo, office visits.  And there was chaos, fear, worry. Feeling alone in the big Kaiser system even though I worked here, difficult treatment decisions, the search for an oncologist that was a good match for us, grief, and anger.

Anger at how the diagnosis was given, with no guidance to prepare us for the  shock. Anger at having our lives turned upside down.

I was angry all the time. I was desperately sad.  And then I had to go back to work where every day my job was to sit with patients and families who faced their mortality, while we faced ours at home.  I always had loved my work, but now I felt lost. Unmoored.

When my mom died five years ago I was in the middle of my chaplaincy residency.  I learned there how to return to work while actively grieving.  My supervisors EXPECTED me to NOT walk into hospital rooms and serve patients until I was ready.  After my week of shiva, when I was ready, I walked into one room and stayed until I couldn’t any longer. When I left I cried and reflected with my supervisor how that was. The next day I took a deep breath and saw more patients.  My supervisors expected me to listen to my grief and to pace myself.  I learned how to let my grief guide me so I could be an even better chaplain and rabbi.

At first when I returned to work after Judith’s diagnosis I turned away from patients with Multiple Myeloma.  I couldn’t bare seeing what might be coming down the road for us.

Over time, I came to understand and serve seriously ill patients in ways I hadn’t before.  I was a provider, AND I was also the family member of a patient facing a life-threatening disease.  I learned to sit with patients as I wished my providers would have sat with us. With presence, patience and kindness.  My work gave me purpose, meaning, confidence, calm, and connection with patients and family members in new and even more rewarding ways than ever before. I learned how to pace myself, just like I had after my mother had died.

Four months after Judith’s diagnosis my father died on the two year anniversary of my mother’s death.  I felt supported when my coworkers showed up to my father’s funeral. When I was surprised at my exhaustion or when I forgot things, my coworkers reminded me that I was grieving and to pace myself.

I feel supported by people who ask me how Judith is doing and they listen.

I wonder why more people who know what we are going through don’t ask me about how it is going.  I especially felt that way during the weeks and months of Judith’s stem cell transplant at Stanford.   I wonder if it is because we take such good care of our very ill and often dying patients and don’t have anything left for each other.  Or maybe I look like I am “fine” and don’t need anything.  I just don’t know.  I often wonder, and worry, how it will be when Judith is in the hospital bed in my workplace, and I am the family member.

Thank God I eventually found the support of the outpatient Palliative Care program where I can talk about our journey and get help seeing the bigger picture.  Resilience also comes through creative expression. Judith wrote and performed two excellent one woman shows about her experiences with her diagnosis and her transplant. They are funny and deeply moving.  I have a blog where I write about my grief and insights.  I share what I have learned with other medical providers, patients and families in a variety of venues.  Creative expression is life saving for me.

I am not afraid of my grief.  I am not afraid to cry with my patients or to sit with them in their pain.  I have learned that their pain and stories are not mine.

My story is still unfolding.

 

*an adaption of this talk was given at a work meeting

 

 

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