Bandages, Crayons and White Myopia

“Nothing in all the world is more dangerous than sincere ignorance and conscientious stupidity” Martin Luther King Jr.”

I learned something at a late age a few days ago. I had a sore on my face and wanted to cover it with a bandage. I walked to my local Walgreens in San Francisco and bought a package. They matched my skin tone perfectly.

Later, the thought occurred to me, what if I were not a ‘white’ person? Surely these days, it must be easy to get bandages to match all skin shades. Guess what, it’s not. With a little help from Google, I found out they do exist (marketed under names like Ourtone and Tru-Color) They can be ordered online but only one ‘Target’ store currently has them in stock in San Francisco. So you can’t just walk into your local drugstore to buy them. I wonder which clinics, hospitals and schools have them.

From a 2013 article by Sebastian Malo in the Atlantic:

Orundu Johnson, a 66-year-old African American woman living in Harlem, remembers. “The bandages would say flesh color, and I’d explain to my kids, ‘Well, that’s not your flesh.”

Entrepreneur, Michael Panayiotis was frustrated by the placement of his product, ‘Ebon-Aide’, which usually ended up on separate shelves dedicated to satisfying the needs of Afro-American customers. “If you don’t show it to people, how are they going to buy it?” he said. He lost his investment and his company folded in 2002.

About Crayons

Then I remembered my first crayolas having a color labeled ‘flesh’ , a pinkish beige. It did not occur to my baby brain that there was any other color for skin. In 1962 the color was permanently renamed ‘peach’ due to the efforts of one smart woman, June Handler, who wrote to Crayola. They changed the name almost immediately.

June was doing doctoral research on “An Attempt to change kindergarten children’s attitudes of prejudice toward the negro”. She had always been concerned about black/white prejudice, especially in young children. In her abstract, the children who were five would make derogatory remarks about those who were black and she tried to help them understand prejudice and what it does.

In 1992 Crayola introduced a special crayola collection called ‘Colors of the World’ including 24 crayons to reproduce different skin tones. You can purchase them online. I do remember as a kid being frustrated trying to portray skin colors even for different ‘white’ people.

I did a statistically insignificant survey of my friends. One caucasian, a little older than me, who had been a teacher of special needs kids and had never before thought of the flesh color discrepancy, just took it for granted, like me. Another, a little younger, who came to this country as a child from India was always aware of the discrepancies. She simply started wearing dinosaur and cartoon bandages.

What else is there still for me to learn?

https://www.theatlantic.com/health/archive/2013/06/the-story-of-the-black-band-aid/276542/

http://crayoncollecting.blogspot.com/2018/05/the-real-tale-of-color-flesh.htm – post by Ed Heller, the crayon historian

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What I learned from my brain tumor

Me enjoying non- alcoholic Mezcal Madre at Ocean Beach cafe I just grow things. The latest was a benign meningioma in the left frontal lobe. It grew slowly for 10 years before causing inflammation and symptoms of dementia which led to it being discovered on a MRI brain scan. It moved my brain over to make room for itself. I think of it as male. I didn’t name him. He grew to the size of a small peach. There is only so much room inside my skull, so it was an easy decision, he had to go. Surgery to remove him was performed by the talented and experienced neurosurgeon, Dr. Theodosopoulos, at the UCSF hospital on Parnassus on August 2nd. I felt that the Greek gods were watching over me after messing around with me for a while, as is their habit with mortals.

Late July-

I just found out he exists after rapidly increasing symptoms prompted my wonderful primary care N.P. Linda Dulong to schedule an MRI of my head early. My loyal friend Stu drove me to the morning appointment. It went smoothly. After the MRI, a kind technician told us stop by the UCSF ER on our way home. ”Something emergent has showed up on your scan.” Of course I was terrified and in shock. So was Stu, I think, but he remained calm as he drove me to the ER and stayed with me most of the day. The next day, we met the surgeon and he showed us the MRI images of the tumor which had first showed up as a tiny thing on a routine MRI years ago. He also explained why he was sure it was benign. I didn’t trust him yet because I heard this story before https://cancerwell.wordpress.com/2011/02/11/poem-pathology-report

I am so glad to find the tumor has heft and volume. Even more glad that it is benign and operable. The surgery is very low risk. I never thought I could be grateful to have a brain tumor, but I am. 

After Surgery-

What is the difference between the meat and the motion in my brain? How do I remember to relearn myself? I have not been a reliable reporter. The loved ones around me have been worried and I’m glad they are getting get some relief too. I wanted change and now I am getting it unbidden. I have no choice but to accept and that helps.

Through this experience, I have learned once again that I am well loved. I hope I don’t forget again how much I have to lose. My heart is cracking open a bit. I am grateful. I am learning to give love in return. I’m singing aloud to my pills.

First song that started floating around in my head.- “ what a day this has been, what a rare mood I’m in. Why it’s almost like being in love. There’s a smile on my face for the whole human race. Why it’s almost like being in love. All the music in life seems to be like a bell that is ringing for me.”

I was lost, a stranger to myself and others. Now my poet’s heart is awakening slowly and teaching me to relearn, reconnect. I just didn’t know what was going on. My friends and loved ones were so worried. They rallied around and protected me. I am so sad I couldn’t share my fears of dementia with myself or them.  I wrapped myself in gauze. Now I’m just starting to open and wrap myself in the cozy comforter  of their love. 

August 19th-

I am making a speedy recovery in spite of more troubles. Today was my Dad’s birthday. Monday morning Aug 16 I fainted in the kitchen and went back to ER for the day. Stu found me after a phone call from Hawaii and could not rouse me or feel my breathing or pulse. He is called the paramedics and laid me on the floor. They arrived in 5 minutes and my path back to consciousness began. It was very scary to Stu and me. He thought I had died. Dr. Theodosopoulos, who we met with next day by video was not worried about me. He’s seen this many times before in people like me and they recovered well. Main obstacle is lack of sleep which can induce seizures. I spent all day in ER being monitored and reminding myself I was in best place to lose consciousness again. Was not allowed any visitors because of COVID protocols

 I feel like healing machine. I have spent so many years crafting a voice. I now know what can be lost how precious it is. I want to use whatever time I have left to tell my stories, to honor what I’ve learned from those who live near the edge, those who know loss and yet go on.

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Resources for living with cancer

As I’m editing this issue of the Healing Circles Newsletter, the air in San Francisco has been smokey for over a week. Each day I see more people wearing respirator masks a reminder of the growing toll of people who have died in the Camp Fire and other fires in California. I also witness how people open their hearts to one another in dark times and this reminds me of circle practice. I am slowly learning that grief and gratitude coexist  I am excited about gathering with family next week for Thanksgiving. I hope the resources we share with you in this issue will foster resilience in your life.

The first is Beyond conventional Cancer therapies (BCCT) website https://bcct.ngo developed by  Michael Lerner and a team of researchers and patients to provide a guide of sort to all the options people, caregivers, loved ones want to navigate to give themselves the best chances of thriving in their changed circumstances and also support in making decisions in an area where sometimes there no overall right decisions, only the ones you feel are right for you.

After I was diagnosed with cancer I was afraid and motivated to find the best treatment options. I have been lucky that good conventional and integrative options are available to me Through trial and error I ended up combining both. Support was crucial and I got it not only from my family and caregivers, but also through the other people affected by cancer that I met through Commonweal. I have used my intuition when it has been available to me and think it and it has been a strong medicine for me. I still sit with uncertainty every day. I get regular follow-up with my doctors and still sit in circle and practice complementary therapies

BCCT does not recommend any specific therapies, The choices will be up to you. If this seems daunting find a trusted friend, doctor or integrative practitioner to guide you through the process. I wish it had been available to me 10 years ago.

No matter what therapies you choose there are some things that are nurturing and healing for everyone. Eating food is the basis of nurturing yourself. Eating makes me happy. One of the saddest things for me about going through cancer treatment was periods of losing my appetite.

Rebecca Katz and her Cancer fighting kitchen cookbooks and lively blog https://www.rebeccakatz.com helped me get through some low times. She is such a great ambassador for good nutrition and fun eating. Her lively attitude and love of Yum helped me to learn to nurture myself better.

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The Unexpected

Pelosi Statement on Supreme Court Shadow Ruling on Texas Reproductive Rights Case

SEPTEMBER 2, 2021  PRESS RELEASE 

Washington, D.C. – Speaker Nancy Pelosi issued this statement after the Supreme Court ruled in the middle of the night to leave SB8, the most restrictive abortion ban in fifty years, in place:

“The Supreme Court’s cowardly, dark-of-night decision to uphold a flagrantly unconstitutional assault on women’s rights and health is staggering.  That this radically partisan Court chose to do so without a full briefing, oral arguments or providing a full, signed opinion is shameful.

“SB8 delivers catastrophe to women in Texas, particularly women of color and women from low-income communities.  Every woman, everywhere has the constitutional right to basic health care.  SB8 is the most extreme, dangerous abortion ban in half a century, and its purpose is to destroy Roe v. Wade, and even refuses to make exceptions for cases of rape and incest.  This ban necessitates codifying Roe v. Wade.

“Upon our return, the House will bring up Congresswoman Judy Chu’s Women’s Health Protection Act to enshrine into law reproductive health care for all women across America.  

“SB8 unleashes one of the most disturbing, unprecedented and far-reaching assaults on health care providers – and on anyone who helps a woman, in any way, access an abortion – by creating a vigilante bounty system that will have a chilling effect on the provision of any reproductive health care services.  This provision is a cynical, backdoor attempt by partisan lawmakers to evade the Constitution and the law to destroy not only a woman’s right to health care but potentially any right or protection that partisan lawmakers target.

“When the Supreme Court takes up its reproductive rights case this year, we urge it to uphold, as Justice Sotomayor wrote in her dissent, ‘its constitutional obligations to protect not only the rights of women, but also the sanctity of its precedents and of the rule of law.’”

This post originally published Feb. 2020 refers to DTs nomination to the Supreme Court of Amy Coney Barrett, Associate Justice and prior to that his nomination of Brett Kavanaugh.

An excellent article by Laura Bassett in the Atlantic magazine o out lines the history that led up to these shameful events. Let the protests continue. https://www.theatlantic.com/ideas/archive/2021/09/trump-supreme-court-abortion-ban/619963/

My words:

Nancy Pelosi dressed in white holds up her copy of DTs speech and standing tears it in two. Then she puts it down quietly, deliberately. It’s a slow, slow dance she is doing. It is Kabuki. 

I feel I can hear the paper ripping

She is acknowledging something broken. Some trust, some unity which we have always reached back for in the United States is revealed as a lie. We are divided and jumbled together. White sheets with black writing. We make as much sense jumbled as we did in the supposedly together presentations.

Did the republicans or democrats touch each other as they were pronouncing their “testimony”? No, they did not.  That was a room devoid of oxytocin, devoid of living plants, light or anything which makes life worth living. Just one woman nursing a baby could have made a difference. One gurgle of delight.

The only things that touched were the pages as they got handed from one person to another. A theater of question asking, which at least stretched out a silence. When people could contemplate the words being transubstantiated would they realize a farce was being enacted? 

How will we look back at this week a year from now? Will we see the opening of a funnel forming that will suck us all down. Or will we see the opening that will make way for fifty brave women dressed in white and Romney ( who would’ve thunk it?) turned into a superhero by drinking chocolate milk.  

Could oxytocin reconcile me to DT republicans? I don’t believe so.

I will comfort myself with the sound of slow ripping, with the soft edges of the pages. No hard lines, no splits, no graphs. 

I want a softer world.

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Norway – Karen

Karen in snow 1975Karen is still with me

Once in a while I think I see her walking down the street

A tall white blonde woman

There must be others with her hair color but I don’t see them

Yesterday I had the feeling of her body walking  down the lane

I see her daughter who is also my daughter often enough

I don’t think of Karen the way I would if she was alive

Maybe I think of her more now.

I wasn’t actively thinking of her in Norway

She was just there in the pale blue shadows

In the cucumber sandwiches

In the northern lights

 

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Trip to Tromsø – intro

Here I am on Thanksgiving 2017 with Sia in Trosmsø listening to soft rock Christmas music and preparing to go out to eat fish.  I’m liking the polar night, the blue time, the chill snow, and loving the company.  Of all the unpredictable things back in 2012 this is one of the best.  Each day I travel through happiness, frustration, beholding beauty, feeling abandoned etc. like rolling through the sun and shadow of the days.

My new goal is to plan and then leave things to chance and try to be glad about what happens.

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The Unknown Companion

Kripalu labyrinth.JPG

Have I been patient long enough? Have you? Are you even still there? It’s been over three years since I updated this blog.  Much and little has changed. I am well, no recurrence of cancer as far as I know.

My granddaughter is eight now.  I lost my father last year and another dear friend last month. I fear our country lost its mind in November. No way I saw that change coming. What are the losses I don’t even remember losing?

How to start up this blog again? I will do it by linking to Janie Brown’s blog, ‘Life in Death’ an entry titled The Unknown Companion   She asked if she could include a piece I wrote as a letter from death to me. I am so grateful to Janie for publishing it and encouraging me to get going again.  Her whole blog is well worth reading.

Janie Brown is the Executive Director of the Callanish Society, a nonprofit organization she co-founded in 1995 for people who are irrevocably changed by cancer, and who want to heal, whether it be into life, or death.

I’ll just close for now by saying, Happy Spring from lucky me. – Terri

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Life goes on – Dia de los muertes- written in Fall 2015

gustavo altar

Gustavo’s altar- an artist and friend who died Oct 1st 2014 on his 70th birthday

and we are put on earth a little space, that we may learn to bear the beams of love- William Blake

Wow, for two years I have been silent, i don’t know why. My last post at the end of 2013 was titled Patience

I’m  still here and don’t know why I’ve been silent for so long. On dec 31 2013 I conjectured that  I might be in the  cocoon stage of recovery. I had no idea how long that phase would last. I have no idea if i am living well with cancer or being a good cocoon or just living.  My health has been decent. One reason for writing now is to avoid only starting to write again if cancer should return to me.

I lost my sister Karen to cancer several years ago and the time I was able to spend with her before her death remains with me as sad and beautiful memories

Thia, by opening yourself to your death whenever it will come and discussing your wishes with your dearest ones you are honoring them and allowing them to share what can be shared.  (Thia died and since then her granddaughter has been born and bears her name.)

I regret that my sister Karen and I were not able to speak openly about our wishes and fears surrounding her death because neither of us, at that time, was able to fully acknowledge what was becoming inevitable. While we couldn’t speak of it in depth, we were able to be open and deeply connected with each other in  nonverbal ways. it allowed healing of other family relationships also and brought those of us who remain closer to each other and more willing to forgive each others shortcomings. I wish my sister were still living every day and what she shared with me in her dying has helped me to accept  what I have no power to change.

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Patience

“Patience is also a form of action.”
― Auguste Rodin

This is what I tell myself as the weeks have turned into months and I have not updated this blog in spite of my conscious intentions.  Today as 2013 reels off into history, I write to let you know I’m still here and in good health.

I feel much the same as I did in June still in post treatment limbo impatient with myself for taking too long to ‘get over it’ and move on with my life.  I read a lot and I don’t write much. I don’t feel I have anything to say but I hope I will write anyway because really there is nothing new under the sun and yet its all new from moment to moment.  My granddaughter lost her first tooth recently and I was amazed by this commonplace miracle. Now her permanent tooth is visible and a second baby tooth is getting very wobbly.  I lost another dear friend to cancer last month, and  that still seems impossible even though it is another commonplace miracle. It is stunning and will always seem too soon.

‘Living fully with uncertainty is an  art I have yet to master.’ I wrote that back in the fall of 2010.  Now, I find the notion of mastery I thought possible, naive. My healthy coating of protective denial has been stripped away.  My substitutes of choice have turned out to be lumpy security blankets of avoidance, numbness and inertia.  Maybe if I just lie under these blankets time will stop and nothing bad can happen- Whoops, too similar to the the stillness of the coffin. Maybe this is yet another stage of recovery, the cocoon stage and with enough patience I can emerge with renewed creative energy. That’s what I’m going to imagine.

Soon it will be 2014 here in California, so many are already ahead of us. The sun will come up just as it did today and we’ll roll though more predictable seasons and uncertain events. Wishing you, and yours, health and love.

 

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Norway trip – Image sandwiches

Rendalen  RabarbrasafAug 23 – Last night I was going through all the photos from our Norway trip.   The first dream I remember returning home was an image of a Softis  (Norwegian softserve ice cream cone) sprinkled with red fish roe. I didn’t see or eat any such thing, but this dream summed up my impression of Norwegian cuisine. I enjoyed the food there and have been eating sandwiches of buttered bread, cheese, sliced ham, cucumber and sometimes scrambled egg for breakfast often. I haven’t included fish yet, but that may come. According to the book ‘Brown Cheese Please‘,  given to us by family on the first day we arrived, open-faced sandwiches (smørbrød) are among the keys to norwegian character.   I have many layers  images and impressions from the trip and I have been having a hard time getting myself to write them down and organize them. So before too much time gets away here is a small non-chronological sandwich of odds and ends.

( I got news of clear scans today, Yes!  Over time my personal worries about cancer  are becoming more like butter, a thin layer at the base of all my sandwiches.  They do flare up to main course status with odd symptoms , between scans and results, and at other inexplicable times, but only for a short while.)

Briskebakken with Aud see thatAug 7 – My daughter, Sia, and I have returned from three weeks of traveling in Norway and reconnecting with trunk of our family that my grandfather branched off from when he moved to America in his early twenties . A highlight of our visit was a family reunion in Sandefjord where my grandfather grew up and where three generations of the family have been returning each summer to swim and sail since 1938.  The oldest relative we met was 83 and the youngest 8.

Back in San Francisco we are returning to fog, early morning chi kung, new construction , and the neighborhood dahlia garden in full bloom.

Aug 13 – My biggest fear, running out of time. I seem to be flirting with it by putting writing off until the last minute when I have to do something else soon.  Its just another way to rationalize procrastination, as if the repeated frustration of running out of time in small ways could be a useful practice to prepare for running out of time for good.

7/14-15 Travel  – San Francisco – Amsterdam airport- Hamar, Norway

My daughter, Sia, and I began our travels midday on the 14th, boarding a blue KLM 747 in the company of about 400 others. We were not packed in closely as sardines but it felt like it. San Francisco grew smaller, more like my imagined  emerald city,  as we left it behind.  I  watched ‘Searching for Sugarman’ on seat back screen flying over the Atlantic, dozed off briefly listening to Stevie Wonder.  Then we were landing in Amsterdam flying over flat green fields. All I remember of the airport was that it was large, light, and full of signs and billboards in English.  It was so nice to sit in comfortable chairs and stretch out legs.

Airports are great for people watching. The differences between Americans, Dutch and Norwegians when I see them in large groups becomes apparent, just as the varieties trees and plants in new places look familiar but distinct. The combination of lack of sleep and dislocation made me feel I was dreaming even when awake. The flights blended into each other then we were flying over forests and fields to land in Oslo.

Hamar grounds of the CathedralMy second cousin Greger, and his youngest son, a huge expert on everything Harry Potter pick us up.

We are on the highway heading north along the shores of Mjosa, the biggest lake in Norway.  Green fields with red  and white farm houses and pine forests. There are fences to keep the moose off the highway. They have built crossing bridges for the moose along their migration routes.

Our first norwegian meal a big bowl of  strawberries shared with family in the afternoon. Our trip coincides with the short season of fresh local strawberries, little gems of sweetness.

Anne Merete tells me that farmers in other parts of Norway tease the farmers here, saying that they are not really farming because they  have it too easy with the rich soil and good conditions, the crops just grow themselves

I did manage to stay up past 10pm and the sun was low in the sky but it was still bright out. I woke at  4 am,  the sky already light, to the chatter of unfamiliar birds.

Yet I feel  at home here with Sia in the house of Greger and Anne Merete and their five children.

 Karen and Randi 19757/29- The best part is meeting family. Reconnecting with the few I have met when they visited California over the years and meeting, for the first time, those I have only heard about through letters and stories . I’ve felt strongly connected to my sister, Karen on this trip, she came here in 1975 when she was her daughters age, 19, and loved it so much that she considered living here. Instead she returned to the states and eventually settled with her husband in the northern Sierras because it resembled her Norwegian ideal. When her daughter was born she named her  Sia, after an elder relative she greatly admired.Oslo me and Sia at harbor

Traveling here with young Sia, who became my daughter after Karen’s death, feels like completing a cycle.  We have patterns of migration, cycles of returning, that help us give shape to our lives. When we lose someone close to us, no matter how young or old, something is broken. I think this cycling and returning is how we attempt to mend what is continually broken.

8/23

Much more to elaborate,  we travelled from Oslo to Bergen to Roros to Volda through farm lands, mountains and the western fjords, by car, train, ferry. We stayed with several wonderful cousins who opened their homes to us, prepared delightful meals which we often ate outside at picnic tables. Norwegians know how to make the most of summer. We would stay out past sunset 10:30 to 11 and talk about everything. I hope to put together  a picture album of some of the beautiful places we saw and the people who showed them to us.

Geiranger waterfalls and kayaks

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