Chapter 1
"The Myth of Diabetes"

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Chapter 2
"You Have Diabetes"

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Chapter 3
"Blood Sugar Testing Meltdowns"

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Chapter 4
"The Storm Before the Storm"

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Chapter 5
"Two Dark Years and Three Blessings"

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Chapter 6
"Eat This Cake Now!"

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Chapter 7
"Amazing Acts of Kindness"

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Chapter 8
"Meet My Perfect Family"

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Chapter 9
"The Sweat Lodge Might Help You"

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Chapter 10
"My Secret Key to Living Well with Diabetes"

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Chapter 1 - The Myth of Diabetes

Using Our
Wit and
Wisdom
to Live Well
with Diabetes

Barbara Mora

Written by Barbara Mora, Paiute/Dinè

A collaborative effort of Indian Health Service Division of Diabetes Treatment and Prevention and the Centers for Disease Control and Prevention, National Diabetes Wellness Program

"Native Americans,
indigenous people,
are not weak,
confused people.
We are strong,
smart and wise.
We have quick wits
and love to laugh.
We have generous spirits.
We are grounded
in Mother Earth,
connected to our families
and communities.
We are children
of the Creator,
vibrant and
forever blessed."

Introduction
...with best intentions

I had diabetes for about ten years when I was asked to tell my story in a book. At first, it was just a short book explaining how to test blood sugar. But as I started writing each chapter, the book became longer. And it was less about testing blood sugar and more about everything else.
It became much more personal.
Over and over, I asked myself, "Should I write this book?" I have never considered myself an author. I am not an authority on diabetes.
To find the answer, I offered tobacco and prayed. It came to me in word after word, chapter after chapter. I needed to tell my story from my heart. I thought, "Maybe if I tell my story of diabetes in the most truthful way I can, someone will have an easier time with diabetes."
That is my intention. I wrote this book to help even one person. As I was writing, I kept thinking, "I wish I had a book like this when I first found out I had diabetes."
Looking back, there were so many things I wish I had known about diabetes. That is the purpose of this book. To say the things that are not said about diabetes. To explain why diabetes hurt me so much and how it helped me so much.
I do not want praise or fame or attention from this book. I want to honor all Native people who have been affected by diabetes. You are my inspiration. Thank you, Creator, the elders, and all my ancestors for helping me with my diabetes journey and the writing of this book.
It is with best intentions, and not wanting to harm anyone, that I have put these words on paper. May you read them and accept them with an open heart.

Barbara Mora
Bishop, California, September 2007

Chapter 1

THE MYTH OF DIABETES

Does the Creator Give Diabetes to People Who are Bad?

"My mother thought the
Creator was punishing her by
giving her diabetes. She thought
someone had wished bad things
to happen to her."

When I was a child, I heard many myths about diabetes. People called it "bad blood" or said that if you had diabetes in your family, then your family had "a touch of sugar." I didn’t know how people got it. My mother once told me that only mean people got it. She said all the bitter and nasty thoughts of mean people made their blood bad.

I thought, "Well, I’m a nice person, so I won’t get it." I was so relieved. But I wanted extra protection against this scary disease. My father was Dinè (Navajo), and he didn’t have diabetes in his family. Since I spoke some Navajo, sang Navajo songs, and wore turquoise jewelry like my father, I felt surely I would be immune to diabetes.

For even more diabetes prevention power, I made deals with the Creator. I bargained, "If I’m extra kind to my mother and other people, then please don’t give me diabetes." I was nice. I focused on my similarities to my father. I prayed. Surely I was protected against diabetes.

Waiting For The Medicine Man

During this time, my mother developed severe complications due to diabetes, but told only my father. She thought the Creator was punishing her by giving her diabetes. She thought someone had wished bad things to happen to her. My father told her, "We will find a medicine man and get you cured."

My father and family searched for the right medicine man. My mother stayed angry and upset, waiting for him to come and cure her. She didn’t take steps to help herself. She didn’t check her blood sugar or go to clinic appointments, and many times she didn’t take her diabetes medicine as directed. She did not take control of her diabetes. She felt angry, upset, overwhelmed and not in control. She stayed that way for the rest of her life. She passed away from kidney failure due to diabetes. My father was wracked with guilt. He had not found the right medicine man to help her.

Diabetes Strikes

When the day came ten years ago, and my doctor told me I had diabetes, I couldn’t believe it! I was terrified that my mother’s fate would be my own. I was shocked and angry! I couldn’t believe the Creator had let me get diabetes! He forgot our deal! For awhile, I lost faith and could only see a dark, terrifying future. I felt like the doctor had handed me a death sentence.

I couldn’t believe the Creator
had let me get diabetes!
He forgot our deal!

My doctor saw my immense pain and fear. He had patients lined up waiting for him, but he gave me time. He closed the door and let me cry. He told me my diabetes did not have to be like my mother’s or anyone else’s. I could create my own life with diabetes. I could decide how to live well with diabetes. I could choose. I could have control.

My husband, Bob, drove me home. I sat there in the passenger seat, holding my glucometer and a booklet on how to test blood sugar. I didn’t speak. Bob kept looking at me. When we walked into the house, I burst into tears, and Bob calmly said, "We have to deal with this. Whatever you have to do, I’ll do too." Then he quietly walked into our kitchen, opened the refrigerator and cupboards and threw away any food that had sugar in it.

During those first few weeks, Bob was calm and ready to do whatever I needed. When I was overwhelmed with diabetes information, Bob read the glucometer instructions for me! He read the lists of what to eat and what to avoid! He learned about Hemoglobin A1c! He was the clear-headed thinker. His acceptance and calmness made it possible for me to feel sad, cry and then slowly start feeling better.

The First Few Months With Diabetes

I started telling some friends and family members that I had diabetes. For some, it was too scary. They thought, "Oh no! If Barbara has it, I might get it!" Others were angry. Their actions seemed to say, "How dare you get diabetes! You are upsetting me by getting diabetes. I told you you should have lost weight! I told you you should have gone to ceremony!"

And others seemed to avoid the subject. They did not want me to be weak, in need or different. They pretended I didn’t have it and nothing had changed. "Here, eat this cake! Eat this cake!" was their response.

The first few months with diabetes were tough. My blood sugar levels were going up and down while my medication was being adjusted to fit my needs. I had many emotional ups and downs. Every time I was supposed to test my blood sugar, I just put my head down on the table and cried. Looking back, I think I was depressed.

During those difficult months, I made myself go to a diabetes clinic meeting once a month. I don’t know if I was really hearing the words of the health staff or other people with diabetes. They were saying I could live well and feel great even though I had diabetes.

I sat there in the meetings, still depressed, still scared. But every month my depression was a little less and hope was coming back. At every meeting, I could hear more of the words of the health staff and other people with diabetes. My spirits lifted.

I was beginning to see that I could have a happy, fulfilling life with diabetes.

Overcoming Diabetes And Beginning A New Life

Many years later, I am writing this book, and I have a wonderful life. I am healthy with diabetes. My blood sugar levels are good. If I can overcome the fear, the pain, the hopelessness of diabetes, you can too.

I have a wonderful life.
I am healthy with diabetes.
If I can overcome the fear,
the pain, the hopelessness of
diabetes, you can too.

Think of yourself as a child. You are a child with diabetes, and everything from here on in is going to be new. You are still the same person, with the same hopes, dreams and unique abilities. But you have diabetes. You now have a new challenge and a new opportunity.

When I first found out I had diabetes, I certainly did not view it as a challenge or opportunity. I viewed it as a huge problem I was not capable of overcoming. It was a problem bigger than my mother, father, medicine men, maybe even the Creator. A simple, nice Paiute/Dinè person like me couldn’t possibly overcome the problem of diabetes!

Now I know that I had it within me to overcome diabetes. In fact, having diabetes started me on a new life. During the ten years that I have had diabetes, I have become a more spiritually, emotionally and physically strong person. I have grown in wisdom and self-discipline. I am more honest.

I trust and depend on people more. I have grown closer to my husband, family members and friends.

Looking back on those early days, I see that I focused on the negative. I thought, "Why did I inherit this from my mother? Why didn’t the Creator protect me from this?" Now I see the positive. I see that, along with diabetes, I inherited my mother’s generous spirit and love of people. Friends tell me, "You are just like your mother," and it is the greatest compliment.

I see now that I cannot change the fact that I have diabetes. Moreover, I see that my having diabetes has nothing to do with "bad blood," or bad behavior, or displeasing the Creator. I am a good person who is learning to speak Dinè and Paiute, who says her prayers in both languages, and who has diabetes.

I accept the fact that I have diabetes, and I know I can have control over it and have control over my life.

Understanding And Being Strong

Understanding Native American diabetes myths, and making peace with our history with diabetes, did not happen n an instant. If you just found out you have diabetes, you may feel like you are all alone. If so, go look for someone you trust who will support you and help you be well with diabetes. You cannot do this alone. You will need support to do this.

I see that my having diabetes
has nothing to do with "bad
blood," or bad behavior, or
displeasing the Creator.
I am a good person who is
learning to speak Dinè and
Paiute, who says her prayers,
and who has diabetes.

You have two choices: to take care of yourself and be well with diabetes or not to take care of yourself. Sometimes I have felt like giving up. At times like that, I think of my ancestors. I think of the sacrifices they made to stay alive, to bear children so our people could live on.

All of us are the descendents of survivors. My ancestors do not want me to give up. Their struggle is wasted if I give up because of diabetes. Sometimes when I am at my weakest, I hear them say, "Daughter Barbara! You are made of stronger stuff than that!"

They’re right! Native Americans are not weak, confused people. We are strong, smart, wise. As children of survivors, we know how to fight and win battles. It is in our blood. Having diabetes is not a punishment dealt by the Creator. He didn’t give us "bad blood." Native Americans have bold, brave blood! If there is anyone who can overcome diabetes, if there is anyone who can show that a person can live well with diabetes, it is a Native American. The Creator gave us that strength. With the challenge of diabetes is the opportunity to return to complete wellness. The person to pave the way for wellness, for ourselves, and for our children, is me.
The Person Is You.

As you read this book, know that you are not alone. Already your extended family has expanded. You are my relation. You are in my thoughts and prayers.

I pray to the four directions.
I am thankful for
the animals, plants,
sacred sites and healers.
I pray for all those
who feel alone,
those who have no one
to pray for them.
Let them know
they are not alone.
Aho.

Wit & Wisdom

I asked myself:

Do I really believe diabetes is a punishment?

Can I be a good person and have diabetes?

How can I make peace with myself and the Creator?

IHS DDTP

Chapter 2 - Your Have Diabetes

Using Our
Wit and
Wisdom
to Live Well
with Diabetes

Barbara Mora

Chapter 2

"YOU HAVE DIABETES"

These Words Don't Have to be a Punch in the Stomach

The word ‘diabetes’
is devastating. We think,
‘This is it. It's over.
I'm going to suffer
just like my mother,
grandmother, uncle
or auntie.’

When I heard the words, "You have diabetes," I felt like I had been punched in the stomach. That’s how it was for me and how I think it is for many Native Americans. Everything changes. The word "diabetes" is devastating. We think, "This is it. It’s over. I’m going to suffer just like my mother, grandmother, uncle or auntie.

"Diabetes has a different meaning for Native Americans. What is different for you and for me is that we have a dark history with diabetes. In some ways, diabetes is the current enemy. It can be a very frightening enemy—one that we cannot see. It can slowly and painfully take our health. It has taken our loved ones and can take us.

We have recent memories of how diabetes has hurt our people. When I first heard the words, "You have diabetes," I thought about the person I loved the most who was hurt so badly by diabetes: my mother. I want to tell you the story of my mother, so you can think about your own parents or grandparents or anyone else who was hurt by diabetes. Maybe you will understand why your reaction to having diabetes is so strong.

My Mother Was A Proud And Strong Native Woman

My mother grew up on the Bishop/Paiute Reservation. She was a typical Paiute woman: proud and strong. In the Paiute culture a woman is absolutely needed in the family and community. Paiute women have an overwhelming desire to be useful. That’s the way my mother was. She was the foundation of the family, the center, the strength. She had high self-esteem because we needed her so much, and she knew it. She never had fancy things—she was happy because we needed her, because we loved her and because she was useful to us.

My mother was one of the strongest and most giving persons I have ever known. She was very active, always taking care of her family and her home. She baked delicious pies, cakes and biscuits. She was an excellent seamstress. She made all the clothes for me and my siblings. When we were young, she made dolls and stuffed toys for us. For hours she would look through the Sears and Roebuck catalog to get ideas of what to sew. Then she would stay up all night sewing.

If she had some money, she bought cloth, but most often she bought second-hand clothes. Then she disassembled the clothes and remade them to fit us. She could make something beautiful out of someone else’s throwaways.

My mother made quilts. They weren’t fancy or intricate. She cut simple squares and stitched them together. She had a way of communicating through her quilts. She had theme quilts, some for boys, girls, graduations, etc. She chose colors that usually do not go well together. But in her quilts, they were beautiful. She made some bright, happy quilts that made you think of flowers. They were messages without words.

She had a way of showing love which required no money. Along with my father, my mother often called the local radio station and requested songs be dedicated to my sisters and me. When we heard the announcer say our names and play a special song, we would jump around with excitement. Our family may not have had much money, but because of my mother and father, we never felt a lack of love.

Hiding Her Diabetes

I think my mother was in her forties when she found out she had diabetes. She hid this from us for 20 years. I think being told you had diabetes back then was like being told you had AIDS when AIDS was first discovered. No one talked about diabetes. There were no examples of people surviving it. Unlike today, there were no walking groups, diabetes talking circles or healthy eating programs. The only examples my mother knew of how people lived with diabetes were bleak:
people with amputations, blindness and on dialysis.

I think being told you had
diabetes back then was
like being told you had
AIDS when AIDS was first
discovered. No one talked
about diabetes. There were
no examples of people
surviving it.

If I could ask my mother now how she felt for those 20 years, I think she would say afraid. I think my mother was afraid of being needy, and even worse, being useless. How could she be proud and giving if she was needing attention and care because she had diabetes? How could someone on dialysis or in a wheelchair be useful to her family? Having diabetes was an assault on my mother’s core identity. It took away the very thing that defined her as a Paiute woman.

For 20 years, my mother did not talk about this frightening thing called diabetes. We did not know she had it. She didn’t exercise or change her eating habits because she was busy taking care of her family. She didn’t check her blood sugar or go to regular medical appointments. I’m not sure if she was prescribed diabetes pills, but I never saw her taking medicine. She pretended she was fine. But during all this time, diabetes was harming almost every part of her body.

Suddenly Everything Changed

One day she became very ill and soon had to go on dialysis. We knew then that she had diabetes. I think we had a hint that being on dialysis was serious. But we denied that diabetes had harmed her body so much. We said, "Oh, Mom needs a little help because she is on dialysis."

I went from believing my
mother was fine, to finding
out she had diabetes and renal
failure which meant she was in
the end stage of her life!

Then one day I picked up some papers that had come from the dialysis center. On them I read, "End stage renal failure." I was in shock! The paper said end stage! That’s how fatal kidney failure was!

In a few short weeks, my reality was changed forever. I went from believing my mother was fine, to finding out she had diabetes which meant she was in the end stage of her life! Having diabetes and coming to the end of one’s life were linked! It happened shockingly fast.

How many Native Americans' experiences with diabetes are the same as mine? We find out someone has diabetes, and before we know it, they have a diabetes complication like kidney disease. They go on dialysis, then they are gone.

Suddenly we found ourselves driving our mother to the dialysis center. Three times a week, we drove four hours each way to a dialysis center. We left at five in the morning and returned home at five in the evening. It helped a lot when the tribe started providing van transports to the center for people who needed dialysis.

My mother tried to be cheerful during the rides, but the entire thing was so depressing. She said, "Why do I have to be like this?" She hated having to depend on us and not being able to be strong for us. Over and over she said, "I’m so useless." She had been so strong and active during her life, but could not be strong about diabetes.

Common Scenario Of Hiding Diabetes

Our family’s experience with diabetes was similar to many other people’s on our reservation. A common scenario was this: A person had diabetes, but told no one. Suddenly the person was flown to a hospital out of the area. That’s when family and community members first realized the person had diabetes. When they came back, they were weak. From then on, they just wasted away. They had amputations, became blind or went on dialysis. Then they passed away. The time between hearing a person had diabetes, to the person passing away, was short. It was often a few, short, horrible years.

That’s why, when my mother heard the words, "You have diabetes," she didn’t tell anyone. Because there were no examples of people living well with diabetes, she didn’t take steps to avoid complications. Later, when she had kidney disease, she gave up.

And that’s why, for you and me, the words, "You have diabetes," can be like a punch in the stomach.

I purposely say the words can be. Hearing the words "You have diabetes," does not have to be like a punch in the stomach!

The Words That Changed Everything

I will always remember the day in the clinic when the doctor said, "You have diabetes." I thought of my mother. I thought, "I will need all sorts of help. I will need to depend on people. I will no longer be able to take care of the people I love."

I began to cry. The doctor closed the door. He looked at me and gently said, "Your diabetes does not have to be like your mother’s or anyone else’s. You can make something good out of having diabetes."

Your diabetes does not have to
be like your mother's or anyone
else's. You can make something
good out of having diabetes.

I believe the Creator, my mother, my grandmother, my uncle and my aunt were in the room with my doctor and me. They helped the doctor choose the exact words that would help me.

He said, "...make something good." I thought, "Yes! I can make things!" Just like my mother making beautiful quilts out of mismatched color squares. Just like my mother making perfectly fitted clothing out of someone’s throwaways. Native women make things! I can take the rough, raw thing of having diabetes and recreate it so it is like a beautiful quilt.

The Creator and my ancestors continued to speak to me. They told me having diabetes is like being told of a scary place, like a deserted road in a dark forest. You are frightened when you drive through the darkness. And when your car breaks down there, you are terrified. But you get out of your car. You summon all your courage and walk down the road to get to a better place. You come out of the dark forest. You are okay, and the forest is no longer terrifying.

You summon all your courage,
and walk down the road to get to
a better place.
You come out of the dark
forest. You are okay, and the
forest is no longer terrifying.

My ears were opened to what the doctor was saying. My heart was opened and my tears stopped.

This is a different time than the time of my mother. Things are not the same as they were in the 1960s or 1980s. Just like music, fashion and technology, diabetes treatment has changed. There are new medications. There are new ways to eat healthy foods and be active. There are proven ways to avoid complications. Having diabetes and going on dialysis, having an amputation or becoming blind are no longer our absolute destiny. If you are going to have diabetes, now is the very best time to have it.

My mother was speaking to me. She said, "Barbara, you can do what I couldn’t do."

Making Diabetes Positive

My mother could not fight diabetes because there were no examples of people surviving it, so she didn’t try. She was a woman who could put a positive spin on anything. She could make a quilt out of scraps. She could make pot holder Christmas gifts out of worn-out jeans. She could make a delicious meal out of a few potatoes and leftover hamburger. But she could not put a positive spin on having diabetes.

What diabetes did to my proud and able mother made me angry. My mother should have lived longer. For awhile, I was angry at people who still had their mothers. "Why do they have their mothers, and my mother was taken from me?!"

I was mad at what diabetes did to my mother. But with the help of her words, I knew that I did not have to follow in her footsteps.

I believe diabetes is our new enemy. We are Native Americans. Show us the enemy and we will fight it! Unlike my mother’s years, today we are no longer hopeless.

We have the tools: the medications, the clinic staff, the exercise, the eating habits, the sense of community, the extended families, the prayers, the connection to Mother Earth. Look around! There are many examples of people living well with diabetes. We have the knowledge and wisdom to fight diabetes and win.

We have many of the things that our grandparents and ancestors did not have. It is our duty to them not to give up. In fact, we must lead the charge against diabetes. We have to do this. We have to defend ourselves against diabetes. In doing so, we are defending our families.

It is our duty to our children and grandchildren. They are looking at us as examples. They love us and depend on us. Not only must we keep ourselves as healthy as possible, we must live as long as possible. My mother left me when she was in her 60s. I still needed her wisdom and love. Her premature passing left a huge hole in my heart, in our family and in the entire community.

It will be different for me.

I plan on living until my late 90s. I might even see 101 or 102. I plan on staying healthy with diabetes. I’ve had it for over ten years and have no major complications. My blood sugar readings are usually 113-120.

By living a long, healthy life, I can carry on the Paiute tradition. I can be generous and useful to my family and community for many years. That is my mother’s wish for me. She knows I can be useful, like she so desperately wanted to be.

The Prommise I Made

Toward the end of her life, my mother was legally blind due to diabetes. But she kept making quilts. She needed our help to thread the needles on her sewing machine and cut out cloth squares. We described the colors of the fabrics to her. We helped her arrange the squares at the sewing machine, so she could sew the straight lines.

Some of my mother’s quilts are carefully folded and put away in my hall closet. Sometimes I take them out, smell them, feel the textures of the squares and take in the bright mix of colors. My mother put her spirit into these quilts. They are simple, bold, beautiful, strong. I wrap myself up in them. I am protected and comforted by my mother’s strength and generosity.

The quilts remind me of her struggle with diabetes: The disease tried to engulf her in hopelessness, and it almost did. The quilts were her statement, her proof that she was useful. Every stitch was her silent, determined way of saying, "See, I have not completely given up!"

Warmed by my mother’s quilts, I made a promise to her, and to my grandmother, uncle, aunt and the Creator, that I will never give up.

Wit & Wisdom

I asked myself:

How have my loved ones been affected by diabetes?

Do I know anyone living well with diabetes?

How are they doing it?

How can my experience with diabetes be different than my mom's? aunts'? uncles'?

IHS DDTP

Chapter 3 - Blood Sugar Testing Meltdowns

Using Our
Wit and
Wisdom
to Live Well
with Diabetes

Barbara Mora

Chapter 3

BLOOD SUGAR TESTING MELTDOWNS

The Truth Behind the Trauma

"As I put my finger next to
the glucometer, I thought,
‘I can’t do this.’
It was like a snake striking
me whenever the glucometer
pricked my finger—I couldn't
help but jerk my finger away.
‘I really can’t do this!’"

If you were to watch me test my blood sugar today, you would be fooled. Every morning I lay my glucometer and test strips on the coffee table, sit up straight and stick my finger. I do this three times a day. I look calm and brave and matter-of-fact. Blood sugar testing? No problem. But it has not always been "no problem."

When I first found out I had diabetes, the simple act of sticking my finger with a hair-thin finger stick was a major problem. I sat at the same coffee table with these foreign objects laid out and had "blood sugar testing meltdowns." My stomach tied up in knots. My breathing became shallow. My heart rate went up. I felt almost unable to control my hands.

As I put my finger next to the glucometer, I thought, "I can’t do this." Just as the click of the finger stick sprang the stick, I thought of a snake biting me, and I jerked my finger away. "I really can’t do this!" Over and over I tried, jerking my finger away several times before I finally drew the drop of blood. With a shaking hand, I lifted the test strip to the round, red bead. There was some relief after that moment. "Whew, I did it. I got that terrifying thing over with." Then dread. "I have to do it three more times today, then tomorrow, then the next day, for the rest of my life." Sometimes that thought was so devastating, I put my head down on the coffee table and cried.

Why I had meltdowns

I am a Paiute/Dinè woman and consider myself a brave, warrior woman. Just like most Native Americans, I am a survivor. I have survived the death of loved ones, the devastation of alcoholism, the injustice of boarding school, and countless unkind words said by strangers. I have felt my heart break. I have lived through freezing winters without heat. I have experienced ongoing starvation. I am not unaccustomed to spiritual, emotional and physical pain. I am not afraid of these things. I am tough as nails and a survivor. So why did a tiny stick of my finger render me face down sobbing on the coffee table?

Testing blood sugar is like
another false promise, like a
treaty to be signed. How could I
trust it would work?

I think having diabetes is like the "final insult." My thought pattern was this: After surviving all the injustices, I get diabetes and have to suffer like my mother. Testing my blood sugar is proof that I have diabetes. I think these thoughts were some of the reasons testing my blood sugar was nearly impossible.

But the deep down reason I had "blood sugar testing meltdowns" had to do with the huge bag of emotional and spiritual anguish Native Americans carry around with us. It had to do with the reality of what it is like to be Native in the United States. Testing blood sugar is like another false promise, like a treaty to be signed. They say testing blood sugar is a first step in avoiding diabetes complications. But what I felt deep down in my soul was that it was another false promise. The simple act of testing my blood sugar was not so simple, really. It was a matter of trust. "They," the tribal clinic, the non-Indian experts, were asking me to trust them.

In many ways, the almost inaudible click of the finger stick was not the noise of a needle being sprung. It was a huge blasting announcement that Barbara Mora believed in the non-Indian way of healing. Jerking my finger away was a sign that I was conflicted, that I didn’t want to give up my belief in Native miracles. My head down on the coffee table was utter despair. If I believed in the non-Indian way, I would be selling out. And my biggest horror loomed over the whole blood sugar testing scene: What if it didn’t work? What if I signed the blood sugar testing treaty and a few years later I’m on dialysis? What a fool I would be.

Or I could think, "Hoka hey! It’s a good day to die." Every Native person knows this saying. With the glucometer and the test strips staring at me from my coffee table, the "fearless death" path looked more than tempting—it looked glorious. I’ve seen many people choose this path, rather than test blood sugar and "sell out" to the western ways. But thanks to my ancestors and a Dinè clan aunt, I didn’t choose to say, "Hoka hey."

How My Ancestors And Elders Helped Me

All my life, my Native ance stors and elders have been giving me the tools I would need during those first few weeks of testing blood sugar. Little did I know, when my head was down on the coffee table, that everything I needed was inside me or would be given to me. I had it in me to solve the massive dilemma of whether to choose the western path of blood sugar testing or choose the Native path of fearless death.

Little did I know, when my head
was down on the coffee table, that
everything I needed was inside me,
or would be given to me.

One of the main persons who helped me overcome my blood sugar testing meltdowns was my Dinè clan aunt. My clan aunt has suffered greatly in her life: A newborn child was taken from her and her son almost died in a car accident. She is wise, tough and fearless, just like most Native women. She believes in traditional Native ways, prayer and ceremonies.

About three months after I found out I had diabetes, my aunt came to visit. I got up to make her coffee, and I noticed a glucometer and test strips set out on the kitchen table. I didn’t know my aunt had diabetes. It was early morning. The sun was just coming up. She was not in the house. I went to the window and saw her facing the east, praying. Then she turned to the south, the west, and the north, and prayed.

She began to head back to the house, and I stepped into the kitchen. Without saying a word, she sat down at the kitchen table, sat up perfectly straight, stuck her finger with the finger stick, set the drop of blood on a test strip, and wrote down the number in a small booklet.

I was shocked! She did it like it was no big deal. I couldn’t say anything to her. There was silence as I gave her a cup of coffee.

Later I told her about the trouble I was having testing my blood sugar. She said simply, "Look how small this needle is. Look how big you are. And you are letting this little thing get in your way. It may hurt a little, but some things hurt. You have to figure out a way around the pain. Then test your blood sugar and get on with your day.

"The lesson my aunt was teaching me was much greater than her words. I saw a woman praying. I saw a woman asking for help and acknowledging her blessings. I saw a brave warrior woman making a sacrifice by testing her blood sugar. It was a proud portrait of Native beauty and strength that changed me forever.

I had always prayed before meals, but the next day I rose at daybreak to pray to the four directions. My father and other elders had told me to pray in this way. On that summer day, standing there facing the east, I know my father was watching from above, thinking, "You finally got it, Daughter Barbara!"

Everything About Blood Sugar Testing Changed

From that moment on, everything about blood sugar testing changed. I started viewing it as a sacrifice, like the Sun Dance. I make the sacrifice of my blood on a test strip to have my prayer of good health answered. I suffer the pain, like the piercing of flesh, to sacrifice for myself and for my people. I sit up straight and proud and brave, and I do it for my children and grandchildren, the youngest of whom are my grandsons Mundo and Nathan, and granddaughters Kahlaya and Jade, and for all the rest of them.

All my life, my elders have told me of the importance of prayer. Prayer changes people, things and the course of events. During the weeks following the visit of my aunt, the words of the elders came alive in my spirit. It was as if I had stored them for the time I would really need them.

I realized that if the glucometer was made of abalone, the finger stick made of a porcupine quill, and the test strip an eagle feather,I would have no problem testing my blood sugar.

I make the sacrifice of my blood
on a test strip to have my prayer
of good health answered.
I suffer the pain, like the
piercing of flesh, to sacrifice for
myself and for my people.

Then I realized that everything comes from the earth. The glucometer was made from materials from the earth. I prayed over the glucometer, finger sticks and test strips. I asked that these items be blessed. I made them into precious things. I made them into acceptable objects, which could be easily welcomed by me, a Native person.

Geronimo told the young
warrior that he would have to
live in two worlds and know
what to choose from each.

I prayed to come to peace with the trauma I have endured because I am a Native person living in the United States. I knew I needed to trust what the doctors and the clinic staff were telling me. I had a knee-jerk reaction not to trust— so many things start and end on reservations. Grants are awarded. Programs and staff make promises. Then the grant ends, programs and staff vanish and promises are forgotten. No wonder I was having trouble trusting.

I remembered the words of Geronimo. When a young warrior approached him and told him how he wished to grow up to be a strong warrior just like Geronimo, he was corrected. Geronimo told the young warrior that he would have to be a much greater warrior than himself. The young warrior would have to live in two worlds and know what to choose from each world to live well. And he would have a much harder battle.

Making It Sacred

So I take the technology of blood sugar testing from the non-Indian world. I smudge the glucometer and place it in a special pouch. I set it on my altar of sacred objects, facing the east. The glucometer helps me. It tells me when I have anunseen infection or when I am under stress. It tells me when I need to slow down and take care of myself. It is an amazing tool, like a good friend who will speak up for me.

By honoring the glucometer and the test strips, I cloak them in an abalone shell, a porcupine quill, an eagle feather. Through prayer, I change the non-Indian items to sacred ones that will bless my body. With each drop of my blood, I proudly make my sacrifice, for myself, my grandchildren and my community.

Wit & Wisdom

I asked myself:

What is scary about blood sugar testing?

If I had to stick my finger with a porcupine quill three times a day, would I have as much trouble?

What can I do to make testing my blood sugar more acceptable to me, a Native person?

IHS DDTP

Chapter 4 - The Storm Before the Storm

Using Our
Wit and
Wisdom
to Live Well
with Diabetes

Barbara Mora

Chapter 4

THE STORM BEFORE THE STORM

What Happened Right Before Diabetes?

"Look back at the last few
years before you found out you
had diabetes. There may have
been some devastating event
that led up to the symptoms."

How did you find out you had diabetes? People have asked me that question. I tell them my eyes got blurry, so I went to the clinic. Simple story. Maybe this is similar to what you say. Maybe you had vision problems, or you had to go to the bathroom a lot, or you were drinking lots of water.

We go to the clinic complaining of vision problems, and they tell us we have diabetes. But vision problems, going to the bathroom, and being thirsty, do not tell the complete story.

Many times, these symptoms are only the final events that send us to the clinic.

Look back at the last few years before you found out you had diabetes. There may have been some devastating event that led up to the symptoms.

Many of us who walk through that clinic door to learn we have diabetes carry with us not a small purse filled with a vision problem. We are wheeling in a huge luggage cart, bulging at the sides, suitcases strapped down with bungee cords. I don’t mean to be saying "Boo hoo! I’m such a sad Native person. I have a bunch of baggage and diabetes." But I am saying we should take a serious look at where we are standing when we begin our life with diabetes.

The Beginning Of The Real Story

What happened immediately before the vision problems, or the bathroom trips, or the thirst? Most likely, something traumatic happened. I’ve talked to many people who say that just before they found out they had diabetes, someone in their family died, or went to jail, or had an accident. Or the person was getting divorced or lost their job.

Let me tell you the story behind my blurry eyes. The story begins with my father. His name was Alvin C. Bowman. The "C" stood for Chief, his Navajo name before boarding school took it away. He always signed his name with a C because he never forgot who he was.

My father was a cowboy, tall and slender, always wearing a white cowboy hat and denim shirt. Those Navajo cowboys! Watch out for those "raisin’ Navajo eyes." They say Navajo men are fatal for women because of those eyes.

When I say my father was a cowboy, I mean a real cowboy. He rode bulls and bucking horses in rodeos. I remember hiding out under the rodeo bleachers. I was afraid to watch, afraid he would get hurt.

Rodeo was in his blood. It was his dream to compete and be a rodeo champion. He wanted all of his children to be rodeo riders. But one after the other, his babies turned out to be girls.

That didn’t stop my father. He gave us all boy nicknames. He called me Bobby. He called one of my sisters Peter. He put us on a barrel contraption in the front yard. Tied to the front of the barrel was a rope. Father said, "Bobby! Hold on!"

I obeyed. Then he yanked on the rope, which set the barrel to rocking wildly. In no time, I would be bucked off by the wild barrel. Often I would land on my knee, usually my right knee. (I still have the scars.) I’d scream and howl. No matter.

"Bobby! Get back on the barrel!"

I obeyed.

My Father's Gift

My father was a good rodeo rider, with dreams of being great. He could have followed the rodeo circuit, chasing his dream. Instead he knew we were hungry and needed him. He traded the glory of eight seconds on an ornery bull for a job working construction. My father held signs to direct traffic at construction sites. He drove dump trucks. He could have had a different life. He chose to stay and put food on the table.

What he gave us was his time and a role model of integrity. He wasn’t the type of father you could run to, jump on, and hug. He was "Navajo formal." When he wasn’t calling me Bobby he addressed me as, "Daughter Barbara." When I was working at the library, he would call and say, "This is Alvin Bowman. May I speak to my Beautiful Daughter Barbara?" He called all of us, "Beautiful," as if it were part of our names. He called my mother, "My Beautiful."

He called all of us, "Beautiful,"
as if it were part of our names.
He called my mother,
"My Beautiful."

Their Love Story

He met my mother when he was working for the Civilian Conservation Corps (CCC). My father and his brothers worked on projects in Oregon and California. They saved up their money and bought a huge Ford sedan and a motorcycle. These tall Navajo brothers wore cowboy hats when they drove the Ford and motorcycle into Bishop, California, in the early 1940s. The roads were dirt, so they created quite a dust cloud. The Bishop Indians were in awe at this unusual spectacle.

I live on TuSu Lane, the road that my father, his brothers and other CCC workers built. You can still see the remains of the house where my mother lived when she was growing up. She was just a teenager when she got her first glimpse of my father. He saw her standing outside the small house. He waved. She giggled. He came back, waved some more. After several months of waving and giggling, they progressed to driving a huge truck up the mountains to get gravel. (There was no hanky panky. I am sure of this.)

He asked her father for her hand in marriage. A year later, permission was granted. They married. He was 18. She was 14.

In the Navajo way, my father brought his saddle and placed it on my mother’s porch. It was his pledge to be with her. The saddle was a symbol of everything he owned, how he was bringing to her all his possessions, depending on her, promising to be with her in her house.

The Biggest Heartbreak

Memories of my father bring forth a feeling of great tenderness. He spoke with a Navajo accent. English was his second language. When my mother's kidneys were failing, we went to the doctor, and my father told him that my mother was having trouble with her kittens. My sisters and I looked at each other, trying to figure out where the kittens came from. My mother was having problems with her kidneys.

I loved my father tenderly and with utmost respect. He was an image of integrity and devotion. He tried in vain to save my mother from diabetes, and when she died, his life ended. He never smiled again. We had to remind him to eat. A year after her death, my father was hit by a truck and died.

We had two funerals, one in Bishop and one on the Navajo Reservation. I had hopes for the Navajo funeral. I so much wanted to pay my respects to my father on his Navajo homeland in the Navajo way.

Our family traveled there. The funeral was very difficult, full of trauma and sadness. I felt something inside of me shift. I felt like I was out of my mind with grief, conflict, despair.

As we were driving home, I wondered why it was so foggy. "Where is this fog coming from?" I asked Bob. "It isn’t foggy," he said. The next day I went to the clinic and found out I had diabetes.

The Person I Was When I Found Out

There. That’s the complete story of how I found out I had diabetes. I might say, "My vision got blurry, so I went to the clinic and found out I had diabetes." But the true story is this: Along with other family members, I put my life on hold for ten years to take care of my beloved mother who died because of diabetes. Then I helped take care of my father until he died of a broken heart. Then I witnessed the saddest funeral, the biggest disappointment, the crumbling of all my last-chance hopes for my father. And, by the way, my vision got blurry. That’s how I found out I had diabetes.

That’s who I was sitting in the clinic room. That was the point where I began my journey with diabetes.

The Key Question

The doctor says, "What is going on?" And I say, "My vision is blurry." He asks me questions. "Are you going to the bathroom a lot? Are you feeling tired?" He doesn’t ask the key question: "Are you experiencing unbearable grief?"

He tells me I have diabetes. Other clinic staff are very upbeat. Test your blood sugar! Change your eating habits! Walk! You will be okay! They are concerned and smiling and busy and matter-of-fact. Barbara had blurry vision. Barbara has diabetes. Barbara needs a glucometer.

Wait a minute! Barbara is out of her mind with grief! Her heart is broken, in pieces on the ground. Where do we go from here?

Wait a minute! Barbara is out
of her mind with grief!
Her heart is broken, in pieces
on the ground...

A New Life, But No Ceremony

These days, when a young woman begins her moon, we may give her a Pamprin. In the old days, we removed her from her duties. Our communities recognized that she was delicate and in need of care. She went to a special place where she did not have to make decisions, be responsible, or be busy. She was given special soups to drink. Rocks were heated and placed on her abdomen to ease the pain. Her feet were rubbed. No one said, "You have to go here. You have to go there." The only thing she had to do was receive.

When we get diabetes, we also get a whole new body. We become a new person. But there is no right-of-passage, no ceremony. There is no relieving of duties. There is no recognition of how years of grief and devotion and putting our needs last may have led to diabetes.

For almost a dozen years, I gladly put my life on hold for my parents. There were no trips to the gym. There was no carefully washing spinach for my lunchtime salad. I spent every moment taking care of people I loved, and in between moments, I ate sandwiches made of Spam and white bread.

If diabetes is the badge I must wear because of my devotion to those I love, a ceremony sure would be nice!

Honoring the Person With Diabetes

Someday there may be just such a ceremony. In the meantime, let’s know where we start our journeys with diabetes. Often we have just weathered a devastating storm. We were not leisurely shopping and going to work and cooking well-planned meals. We were not leading predictable, almost boring, lives. Often our lives were in chaos. Then we get diabetes.

So let’s treat ourselves tenderly. I can feel tenderness for my father. I can feel the same tenderness for myself. My father gave up his rodeo dreams to fulfill the pledge he made to my mother and to us, his children. I carry my father’s blood. In the same way, I gave up my dreams to take care of the people I loved. I suffered a broken heart and cried many tears. But, like my father, I stayed. My integrity is intact. I have diabetes.

I hear the voice of my father, mingled with the Creator’s:

Beautiful Daughter!
You have loved deeply.
You have sacrificed for your loved ones.
You did not run away,
and now you have diabetes.
Stop going here and there. Rest.
Feel the warmth of the hot rocks.
Let the rocks and the soup
and the people who love you
ease your worries and
take away your pain.

Wit & Wisdom

I asked myself:

What happened during the last few years before getting diabetes?

Do I blame myself for not taking care of myself during those years?
Who was I taking care of?
Did I do it out of love and devotion?

How can I give myself a break?
How can I recognize my struggles and my devotion to others?
Is there a prayer I can say, or a ceremony I can do, to honor the path I walked that led me to diabetes?

IHS DDTP

Chapter 5 - Two Dark Years and Three Blessings

Using Our
Wit and
Wisdom
to Live Well
with Diabetes

Barbara Mora

Chapter 5

TWO DARK YEARS AND THREE BLESSINGS

How Bob, Walking and a Support Group Helped Me

"Whatever you have to do
to be healthy with diabetes,
I will do, too."

Someone asked me when was the happiest time in my life. Now! No doubt, I am the happiest I’ve ever been. I am more honest, more compassionate, more aware of every blessing in my life.

The second happiest time in my life was twelve years before I got diabetes. I was working at the Bishop library, surrounded by books, a great love of mine. It was a dream job.

I was married to my wonderful husband, Bob. We did normal things. We went fishing. We went to pow-wows. We fixed up our house.

I have fond memories of the days we spent digging a path to lay pipe for the plumbing. Bob was literally "in the trenches," digging and tossing up shovels of dirt and stones. I brought Bob picks, pipe sections, glasses of water. My father sat on the side of the trench, giving us advice from a lawn chair. Who would think that laying pipe would be a fond memory? For this Paiute/Dinè girl, those were good times!

Before the years of taking care of my mother and father, I was a bright, happy person. People described me as energetic, quick to laugh, kind, generous, cheerful, purposeful and optimistic.

I was a bright, happy person.
People described me as
energetic, quick to laugh, kind,
generous, cheerful, purposeful
and optimistic.

Fast forward twelve years, and I was a different person. A dozen years of taking care of my beloved mother and father had taken a toll. The first few months after I found out I had diabetes, I described myself with very different words: confused, anxious, anti-social, scared, resentful, angry, burdened, really sad and not in control.

These words describe the person who had to learn all about blood sugar testing, the person who had to muster up some self-discipline to exercise and change eating habits.

Blood Sugar Ups And Downs

To make it even more difficult, the doctor was trying to get me on the right medication. Every person responds to diabetes medicine differently. That meant my blood sugar was going up and down, and so were my emotions. Many times I felt hot, like I had a fever. When my blood sugar was low, I felt clumsy and confused. I became paranoid. My life looked bleak and hopeless. I always felt like crying and often did. I didn’t want to be around my family or friends. At times, my body felt like eating, but for some strange reason, just the thought of food made me feel sick.

I wanted to quit taking my diabetes pills. Or I wanted to use my mother’s "pick and choose method" and just take a few of them when I felt like it.

I was a mess.

Stuck In A Cocoon

If I could speak to myself back then, I would say this: "Barbara, don’t worry. That’s not the real you. That’s not the permanent you. That is you in a cocoon, all wrapped up by worry and uncertainty. There is something on the other side of the cocoon. A beautiful being. It will happen.

But it will take much energy and turmoil for you to change and be able to bust out of the cocoon. It will not be easy, and it may take some time. But it will happen."

I am all busted out of my cocoon now! It took two years. With super-woman eyesight, I can see the three things that kept me moving, the three things that brought me back to myself.

The first was my husband Bob.

The Most Perfect Words

People react to you having diabetes in a million different ways. Some pretend you don’t have it. Others might think of the impact your having diabetes has on them. Bob didn’t react that way. When he drove me back home from the clinic he said simply, "Whatever you have to do to be healthy with diabetes, I will do too."

When we got home, he immediately went to the kitchen, opened the cupboards, and threw away every sugary food.

There were days I couldn’t get out of bed. After Bob went to work, I pulled the blankets over my head. I cried, stopped crying, then cried some more. At noon when he came home, there I was, still in bed. He could have been scared, or impatient, or even angry. But he was not. He said, "It’s okay. I’m here. I’ll help you. Everything is going to be okay."

The Complex Thing Of Walking

The clinic staff showed me another thing that helped me a lot and still helps me. They suggested that I test my blood sugar one day, then the next day walk and test my blood sugar again. The first day my blood sugar was 145, which was normal for me. The next day I walked near my home for 30 minutes in the morning. In the evening, I did the same thing.

I tested my blood sugar.
It was 112! Just by walking,
I had lowered my blood sugar
by 30 points!

Then I tested my blood sugar. It was 112! Just by walking, I had lowered my blood sugar by over 30 points!

I can’t say that walking every day was an easy thing for me. It wasn’t the physical part of walking that was difficult. It was the mental thought of walking. I had seen non-Indian women walking near our reservation, doing the race walk that makes a person look like a duck. I always thought, "Who are these people? Don’t they have something purposeful to do? Are there no pow-wow outfits they should be making?"

Then another thought materialized in my mind as my mother’s voice. "Barbara! You can’t go out and play until your chores are done!" Walking was play. When everything was hunky-dory, when my chores were done and all the pow-wow outfits were made and hanging side-by-side in my closet, I could go walking.

And one more thought about walking: It was for people who could not afford cars. People who did not have the money to buy cars were the ones who walked. If you saw people walking on the side of the road, you felt sorry for them. You offered them a ride.

What Happened When I Walked

But there I was, walking on the side of the road, maybe looking like a duck. The blood sugar reading of 112 was stuck in my mind. Walking would make my blood sugar go down. This thought overpowered my mother’s voice. (But it did not erase her voice!)

As I suspected, people stopped and offered me rides. "Oh, no! It’s too cold to walk! It’s too windy! Get in! Let me give you a ride!" I blamed the bad fortune of my having to walk on the side of the road on my doctor: "My doctor told me I have to walk."

Bob walked with me. What precious memories! I saw Mount Tom, our spiritual mountain, covered with snow. Bob kept talking to me, telling me it was nearing the time to gather wild tobacco and sage.

Walking helped my mind start to clear. It was like my eyes opened. I had been thinking I would stay inside my house, and close myself off to take care of my diabetes. But the act of walking, of getting outside, put a different thought in my head: The world is still the same. The world is still beautiful and has the same things to offer. I can still have them if I want them.

The Group With No Loophole

The third thing that helped get me out of my dark days was going to a diabetes support group. At first I went there looking for a loophole. The deep down thought inside of me was, "If there is any way to fix diabetes, I am going to fix it." (I’m a fixer, a problem solver, a person who can save the day.)

I looked around the room at the other people who had diabetes. "I am not like them," I thought. "I will be a really good diabetes patient, and that’s how I will find a way to get rid of my diabetes."

I kept going to the support groups and slowly realized diabetes was permanent. I looked around the room. I was no longer a different person, a person who would find a miracle way out of diabetes. I was like the other people in the room. They had diabetes. I had diabetes. I really saw them. They were okay and normal. They didn’t have to say the words, but I heard the words: "It’s okay. You don’t have to be scared."

Busting Out

Climbing out of the dark days didn’t happen in an instant. I had endured grief for twelve years before diabetes. Looking back, I think it is amazing that I emerged from my dark days in only two years. Through those two years, I kept testing my blood sugar. I took my medication. I went to support groups. I walked. I was held up, pushed, led, and embraced by my husband.

As my blood sugar got under control, and my head clearedfrom walking, my depression lifted. It didn’t happen in an instant. I didn’t wake up and say, "Cheerful Barbara is back!" But week by week, I started regaining my true self. I started beading and making beautiful things. I started going to pow-wows. I started taking part in ceremonies.

I remember the first spring I was not depressed. It was likestepping out of my mind, out of the tightness of worry. I was walking, and I was no longer wrapped up inside my worried mind. I was experiencing the moment! I was aware of my breathing! I noticed the snow felt different, like it was making a last-ditch effort to cover up the warming earth. I noticed thewild locust trees, still gray from the winter. But on the very top branches were tiny buds. Overhead there was a constant chatter of the red-winged blackbirds, heading north. I could hear them! I saw willow branches, imagined the fuzziness of their tips. They were waiting for me to gather them, waiting tobe made into baskets.

Like the busting out of the springtime buds, I was busting out of my cocoon. I was changed, a different person. But I was beautiful, and I was alive.

Wit & Wisdom

I asked myself:

When was the last time I was happy, feeling peaceful?
What words describe myselfat that time?

What are words that describe myself now?
Why might that be?

Can I see that I can return to my happy self? What are the little, daily steps I can take to return to my happy self?

What can help me?
Who can help me?

IHS DDTP

Chapter 6 - Eat This Cake Now!

Using Our
Wit and
Wisdom
to Live Well
with Diabetes

Barbara Mora

Chapter 6

EAT THIS CAKE NOW!"

What Happens When You Come Out of the Diabetes Closet

"The reactions were
fast and furious. I was not
prepared for the hurricane-
force winds of opinions that
were hurled at me from family,
friends and strangers."

Have you ever seen the TV program The Sopranos, about a Mafia family? When I first saw it, I thought, "Oh my gosh! Someone has been spying on my family!" Like the characters in the TV program, my family is very close, very complex, very dramatic. My family is never boring. We are funny, tragic and entertaining.

There are definite, carved-in-stone family rules. First and foremost, we keep things to ourselves. To us, there are two kinds of people: family and outsiders. If something bad happens within the family, you keep it to yourself. You do not share your dirty laundry with outsiders. At all costs, you protect the family.

At first, having diabetes was like having a huge, dirty piece of laundry. If I didn’t tell anyone, my family would not be shamed. My family would not have to answer questions, overhear comments, try to interpret quick glances. It was hard for me to start telling people I had diabetes, mainly because I felt like I was betraying my family.

It was hard for me to tell
people I had diabetes, mainly
because I felt like I was
betraying my family.

The New Rules Of Stepping Out

To start my life with diabetes, I had to look at how to relate to my family and how to relate to outsiders. I was like a butterfly who had busted out of my cocoon, but I had wobbly wings. I had to learn how to relate to people as a person with diabetes.

I started to go to gatherings. It took so much energy. The thought, "I have diabetes," never left my mind. When someone looked at me, I thought, "Do they know I have diabetes?"

I was super self-conscious. Should I take my medicine in the bathroom, or should I just quickly take the pills while I stand next to the buffet table? What if someone asks me about the medicine?

To test my blood sugar, should I excuse myself? Would that be rude? Do I have to tell people that I’m going to test my blood sugar? If I don’t tell them, is that dishonest? If I do tell them, am I calling attention to myself?

And how do I answer the simple question, "How are you?" Do I say, "I’m okay. I have diabetes"? No, that would never work! Immediately I felt guilty about betraying my family. Then I thought, "No one wants to hear those downer words."

I felt I was standing on shaky ground. I was fragile, self-conscious and lacking confidence. I so much wanted to wear a happy face. I thought if I said the words, "I have diabetes," my lips would tremble, and my eyes would start filling up. I thought: If I say those words, people will scatter like flies. What a way to end a party. What a way to clear a room.

My Mother Kept Quiet

I know what my mother did. She stayed loyal to the family. She protected our family secret of her having diabetes. She never "inconvenienced" outsiders or made them uncomfortable by letting them know she had diabetes. She never called attention to herself. Her behavior was the old Paiute way.

It has been over ten years that I have had diabetes, and I have purposely chosen a different path than my mother. Denial and covering up diabetes looked so tempting. In some ways, it looked like a courageous or selfless path. But everything I was learning in the support group, by going on walks, by talking to my husband, by connecting to Mother Earth, by going to ceremonies, and listening to ancient wise voices, was pointing me in a different direction. Honesty and acceptance felt better.

So slowly and on shaky legs, I started saying the words out loud: "I have diabetes." The reactions were fast and furious. I was not prepared for the hurricane-force winds of opinions that were hurled at me from family, friends and strangers. Who would have thought that my cracking, whisper of a voice would be met with such strong, passionate beliefs about what I should or should not do?

Get Ready For The Reaction

There were many reactions to my having diabetes. Some were kind, others were not. There were three kinds of reactions that especially confused me. They happened to me ten years ago. They still happen now. Maybe if I share my experiences, you will have an easier time when you start saying, "I have diabetes."

Eat This Cake Now

One of the first reactions to my having diabetes were three simple words: "EAT THIS CAKE!" I’m not kidding. A person found out I had diabetes, then with almost brute force, shoved a piece of chocolate cake at me and demanded, "EAT THIS CAKE!" When I declined, the person had a fit because I was not eating cake.

Another common reaction was, "EAT THIS CAKE! NO, DON’T EAT THIS CAKE!" I was surprised when a person, who knew I had diabetes, approached me with a huge mound of cake and ice cream, started to hand it to me, and just before I declined the gooey mass, jerked it back and said, "Oh! You have diabetes. You can’t eat this.

"The third type of reaction was this: I was eating a small piece of cake on a flight to Oregon. A person I hardly knew found out I had diabetes, saw I was eating the cake and grabbed it from me saying, "YOU CAN’T EAT CAKE! YOU HAVE DIABETES!" The grabbing of my food by the food police was especially irritating!

Forgiveness And Understanding

I am still slightly irritated when these three things happen to me. Yes, they still happen. People seem to be trying to manage my cake intake. At first I was confused by these behaviors. Then I was mad. But a medicine man helped me see how I had to forgive people. Harboring anger or resentment is like an acid. It builds up and harms us.

With the help of the medicine man, I saw how I needed to forgive and understand the cake managers.

The Cake Pusher Might Be Afraid

I think all three behaviors are inspired by ignorance and fear. The Cake Pusher plunks a piece of cake in front of me and says, "Don’t you know how long it took for me to make this?" Or, "How dare you upset me! How dare you upset this happy gathering! This is a happy birthday party, and you'd better eat cake and be happy!"

They are the same people who try to force an alcoholic to drink by saying, "We’re having a toast here. What’s the matter? Just one drink won’t hurt."

What the Cake Pusher might be thinking is: I am scared to death because you have diabetes. You can’t possibly have diabetes. If you have diabetes, then I might get diabetes. You must act like you don’t have diabetes. You having diabetes will ruin my reality. If you care about me, you will pretend you do not have diabetes.

They are the same people
who try to force an
alcoholic to drink.

The Cake Teaser Might Be Mad And Insecure

I think the Cake Teaser can be the meanest. The Cake Teaser plunks cake down and jerks it back while saying in a concerned and surprised voice, "Oh! You have diabetes!"

When people do this, I feel like a little child. Being teased like this makes me feel that the person is being mean, but I cannot call them on it. Their meanness is disguised as concern for me.

I’m not sure what the Cake Teaser really feels deep inside, but my guess is that they feel insecure. By being mean to me, giving me cake, then jerking it away, they show that they are a little better than me. My having diabetes might make them feel a little stronger. They are the controllers of the cake—they have the power.

The Cake Police Might Have Misplaced Concern

I was a Cake Police for my mother, so I know how our minds work. It is our job to make sure a person with diabetes does not eat a single sweet thing. We have the best intentions. I thought if I monitored everything my mother put in her mouth, I could save her from the hands of death.

I went on candy raids. I went through her bedroom, opening her drawers to scoop up candy bars. I lifted her mattress to remove wrapped candied orange jelly slices. I rifled through her closet until I found her stockpile of pop.

They want me to be strong,
like I wanted my mother to be
strong. They want me to be
disciplined, get a grip on my
diabetes and survive it.

So when someone gasps and says, "You can’t eat that!" I understand. They are concerned about me. At the same time, they want me to be strong, like I wanted my mother to be strong. They want me to be disciplined, get a grip on my diabetes and survive it. They want my diabetes to be a little thing in the big picture of tribal allotments and the enrollment program. If they saw me with a piece of cake, they might think, I care about you. But why can’t you be stronger? Just stop eating cake. Why is that so hard?

One day I realized that policing my mother’s food was disrespectful. I stopped. Years later, when I got diabetes, I regretted how I disrespected my mother by trying to police her food. I didn’t understand how diabetes can bring you to your knees. I wanted her to be strong and could not understand how an orange jelly slice could overpower her. Now I know.

Now I have great compassion for anyone who has diabetes and is struggling with the temptations of food, or anyone who has a huge challenge in their life. And every day, I am trying to gain more compassion for all the people who, when they see me coming, don’t really see me, but see a flashing, neon reminder of their insecurities and fears.

Finding Solid Ground

This journey of diabetes has helped me better understand human nature. I see myself reflected in many people, in their reactions to me. But that was a younger self. Before I had diabetes, I felt stronger, more knowledgeable, in control. I had a grip and wanted other people to just get a grip. I wanted people to be strong with diabetes. I wondered, "Why is it such a big deal?" I didn’t understand how having diabetes pulls the rug right out from under you. Now I know. Now I have grown in wisdom and compassion.

Now my voice is strong and
clear. I stand on solid,
not shaky, legs. I slowly eat my
cake. I savor every bite.

So when people push cake, tease me with cake, or police my cake, I automatically say, "I can have a small piece of cake. It is part of my meal plan for the day. Thank you for your concern."

Now my voice is strong and clear. I stand on solid, not shaky, legs. I slowly eat my cake. I savor every bite.

Wit & Wisdom

I asked myself:

Is it okay for me to start saying, "I have diabetes?" Could saying it out loud help myself and others? How?

How might my family react? How might others react? Why?

Is there a way I can gracefully handle what they say?

Can I be good to myself, take care of myself, yet have compassion for them?

IHS DDTP

Chapter 7 - Amazing Acts of Kindness

Using Our
Wit and
Wisdom
to Live Well
with Diabetes

Barbara Mora

Chapter 7

AMAZING ACTS OF KINDNESS

How Having Diabetes Opens the Door

"Having diabetes has
opened the door for people
to be kind to me, and for me
to accept their kindness and
be amazed by it."

There’s no doubt diabetes changed the way many people react toward me. Although I was surprised when so many people started telling me what to do and what not to do, there was another reaction that shocked me even more: genuine, from-the-heart kindness.

The Doctor At Toiyabe

The amazing acts of kindness started with my doctor, Steven Levesque. I’ve mentioned it before. His words and actions were so critical. He treated me like a loving parent treats an innocent, scared child. He closed the exam room door. He gave me hope. He gave me words to cling to at the beginning of my new life with diabetes, words that I hear to this day: "Your diabetes does not have to be like your mother’s or anyone else’s. You can make something good out of having diabetes."

The Creator was looking out for me by giving me Dr. Levesque as the person to set the stage for my life with diabetes. I always knew Dr. Levesque was competent. But until that day, I didn’t know of his huge capacity for kindness and empathy. He said the perfect words. He closed the door. He saw me and was there in the room with me.

He closed the door and let
me cry. He gave me his time.
What a wonderful gift.

Dr. Levesque was loved by many, and I can see why. He died early in life, in a rock climbing accident. At his memorial there was a picture of him with his beloved mountains in the background: not a big man, slender, dark-haired and handsome. He had just turned around to look over his shoulder to face the camera. He was smiling big.

Many people attended the memorial. It was held at a huge church. People of all ages, Native people, rock climbers and health staff were there. His beautiful family was there; he left behind his wife and young children.

Bob played the flute. Many people spoke about Dr. Levesque’s kindness. I told of how he let me speak, let me voice my fears about diabetes. "He closed the door and let me cry. He gave me his time." What a wonderful gift.

He was known simply as, "The Doctor at Toiyabe." I believe he was put here on earth to spread enlightenment, to show us the way. He showed us how to rise above job descriptions. He was never just doing his job. He was touching hearts with his kindness.

My Husband Bob

The second person to show me amazing kindness was my husband, Bob. When he drove me home from the clinic, we didn’t talk. Bob broke the silence by saying, "Whatever you have to do, I’ll do, too." When we got home, he calmly went through the kitchen cupboards and threw away the junk food.

Bob’s acts of kindness go on and on. During the first two difficult years, Bob walked with me. On his days off of work, he went to diabetes support group meetings with me. I brought back stacks of diabetes care booklets about foot care, eye care, kidney care. I was too scared to read them. Bob read every page. Because he was brave enough to read them, I then read them. Together, we saw how serious it is to have diabetes.

And during the first two years when my blood sugar was going up and down, and I was moody, depressed and tired, he took on extra chores. He hung the laundry. He didn’t do it according to my high laundry standards. I hang the clothes inside-out, so tight a coin will bounce off a strung undershirt. But I kept my mouth shut, and I was grateful.

He started doing more
grocery shopping. He read
labels to check fat, sugar and
sodium content.

For many months, I felt nauseated and lost my appetite. Bob tried to get me to eat more. He took over the cooking. He made scrambled eggs. To get me to eat them, he would top them with a spoonful of salsa and put a parsley sprig artfully next to the eggs. The red and green really complimented the yellow of the eggs! Even if I had only a forkful of the eggs, I felt like I got a full serving of love.

He started doing more grocery shopping. He read labels, to check fat, sugar and sodium content. When he came home and unpacked the bags, he held up cans and said, "This one has no added sugar." I read between the label lines. Bob wanted me to be healthy and live long. Bob really cared about me.

He Did What He Promised

He kept his promise. He did what I had to do. He was a carved-in-stone meat-and-potatoes guy. So much so that, before I had diabetes, he didn’t know broccoli could be eaten raw! A few months after I was diagnosed, Bob was joining me at meals that included raw vegetable sticks and yogurt! He still can’t eat tofu, though.

Because Bob took on many of my chores, it freed me up to do things I needed to do to take care of my diabetes. First I started attending diabetes workshops. Then I started traveling to diabetes wellness conferences. I even took time to study Pilates. I traveled to San Francisco and was certified as a Pilates instructor.

During one of these trips, a Native woman asked me, "Who is going to take care of Bob? Who is going to feed Bob?" My mind went straight to Bob. I knew he was at home, maybe scooping up a spoonful of yogurt, looking out the window at the laundry that was flapping in the wind, right-side out. Bob was okay. I didn’t feel any guilt by taking time for myself. I felt his constant love and support, carried by the wind, to wherever I needed to go.

The Kindness Of Gina's Actions

Animals can sense a kind heart, at times better than humans. Maybe that’s why you don’t often see my younger sister, Gina, without an animal by her side. A typical sight on TuSu Lane is Gina walking around her home, leading her horse, Gabelon, her cat, Mike Jones, tagging along at her heels.

Gina’s true kindness was able to emerge after she went through rehab. She has always been tough as nails. She can mend a fence and stack hay bales. She drives like a trucker and splits wood like a logger. Gina doesn’t worry about having manicured nails. Her hands are usually covered up by work gloves.

After going through rehab, Gina's true kindness, the kindness hidden in her heart by alcohol, was able to shine. She is not very vocal. She has never said, "I will support you with your diabetes in any way that you need." But that is exactly what she does. She never judges me or tries to control what I do. She never tells me I should not eat something. At the same time, I think she is watching me because she cares.

At birthday parties, I usually accept a small piece of cake and fiddle with it for awhile. I break it up on my plate. I scrape off the frosting. I might have one or two bites. I have noticed Gina watching me. She never says, "Don’t eat that!" Sometimes I wonder what she would do if I put a huge forkful of frosting in my mouth. I might do it someday to see her reaction! But I think she’s keeping an eye on me because she cares. And I also think she is watching me because she, too, is eating less sugar.

She has never said, "I will
support you with your diabetes
in any way that you need." But
that is exactly what she does.

Gina and I are both on paths of wellness. She knows diabetes is not just my concern. It is something that her entire family needs to know about. Maybe that’s why she isn't judgmental. Maybe that’s why she has changed her family’s eating habits. When Gina says, "We’re having chicken salad for dinner tonight," it’s just a simple statement. But it shows me that she supports what I’m doing and is doing it, too.

Gina’s kindness is all about simple statements coupled with action. She shows up at my wellness activities, no matter how busy she is. She might stay only a minute, to drop off some food or help me clean up. She is there when I need an extra hand or just a friendly face. She doesn’t have to say a word. She looks me in the eye, and I know we are in this together.

The Kindness Of Nurse Jeanne

I have also been amazed by the kindness of health staff. I know they are doing their jobs and that they are just people. They can have bad days. But so many of them are kind and smiling, day after day!

Jeannie is a nurse who is always smiling. Her kindness to me extends beyond her natural smile. Most recently her kindness was shown in a simple sentence: "Barbara, we’re starting a Frisbee team, and we need you on it!"

Now for someone who does not have diabetes, this invitation might not seem so special. But for me, it spoke volumes. It said that I was a normal person. It said that when Jeannie looks at me, she does not see a big, flashing sign that says, "Caution! This person has diabetes!"

She has never told me this, but I believe Jeannie sees diabetes as a bump in the road. Every person has some bumps in the roads of their lives. We have to get over them and continue on. We have to not look at them as Great Walls of China. So when Jeannie or any of the other health staff say, "Barbara, join the Frisbee team!" what they are really saying is that I have no limitations. I am not defined by having diabetes. I am normal and able.

By the way, I am thinking of joining the Frisbee team!

Coco And Francine's Huge Act Of Kindness

Sometimes the act of kindness is so great, it’s a blessing you can replay in your mind over and over to bring you peace. Once I needed an operation that required general anesthesia. If you have diabetes, any health problem seems to get magnified. Sometimes your blood sugar can go way up or way down. So I didn’t have only the surgery to worry about. I was worried about my blood sugar. And more than that, I was terrified by the anesthesia. Pain medication makes me go nuts. I become terribly paranoid. My entire body starts itching. The walls start closing in on me.

As I was being prepared for surgery, I told my non-Indian nurses, Coco and Francine, of my fears.

What happened after the surgery is like a dream. As I was waking up in my hospital room, I smelled sage. I heard Paiute singing and felt a gentle wave of sage waft over my head, shoulders, stomach, legs. I felt someone stroking my hair, singing a Paiute song in a gentle whisper. Intermingled with the song were the words, "You’re going to be okay. You’re going to be okay."

As I was waking up in
my hospital room, I smelled
sage. I heard Paiute singing
and felt a gentle wave of sage
waft over my head, shoulders,
stomach, legs.

The pain medication usually takes me out of my body into a wild world of fear. But the sage and the song kept me in my body. They re-awakened cells in me that knew of the time when I was a little girl and almost died. The cells recalled the medicine man burning sage and praying over me. I was okay then, and I would be okay now.

Coco and Francine’s sage and song brought me back to my core. It was the first time I didn't react badly to pain medication. Because of their amazing act of kindness, their honoring of who I am as a Native person, I slept peacefully.

Kindness Opens The Door To More Kindness

Having diabetes has opened the door for people to be kind to me, for me to accept their kindness and be amazed by it. I am forever deeply connected to Dr. Levesque, Bob, Gina, Jeannie, Coco and Francine. I am forever thankful for their gifts of kindness.

Because of their generous acts, another door is open: a door for me to become a kinder, more generous person. Acts of kindness are examples of how to treat people, those you are related to, those you work with, those you might just pass in a hallway.

The door is open for me to be more compassionate, stronger, more patient, more nurturing. The door is open for me to follow these examples of kindness.

There Will Always Be Chances To Give Kindness

Like Bob stepping up to the plate when I needed him most, I recently have been given the opportunity to show some kindness and compassion.

Bob twisted his knee and couldn’t walk without crutches. Suddenly there was a dramatic shift in who cares for whom, in who does what for whom. Suddenly along with a hundred other things, Bob needed me to do something I had never done before: start a car.

It’s a long story, but I have never learned to drive. So when Bob was on crutches, the act of hobbling outside to start the car to warm it up was a huge effort for him. I woke up early to make him coffee and breakfast and faced the real test, the real payback time: I had to walk out to our driveway and start his car.

I faced the real test, the real
payback time: I had to walk
out to our driveway and
start his car.

How exactly is that done? Do I push the key in? Do I turn it clockwise or counterclockwise? Once it starts, do I hold it there for a second? I didn’t want to do it. I was scared and nervous. But of course, I thought of all the things Bob had done for me to help me with diabetes. I thought of his flapping laundry. I thought of the parsley sprigs. I walked to the car, bravely flung the door open, put the key in and turned it. It started. I was overjoyed. I had helped Bob. I had started a car.

Receiving kindness goes hand-in-hand with giving kindness. It opens all sorts of doors to human connection. It provides endless opportunities for the giver to be more compassionate, stronger, braver, more patient. It provides opportunities for the receiver to be more graceful, more humble, less picky, less controlling. There will always be chances to be the givers and the receivers. We are always switching roles.

The Amazing Beauty Of Kindness

A while ago, Bob showed me another kindness. He started giving me gifts of lip gloss and nail polish. He used to give me gifts of food. Some weren’t the best for controlling my blood sugar. Now he says, "I have something in my pocket for you." He pulls out a cherry flavored lip gloss or a bottle of hot pink nail polish.

That’s what kindness is all about. Kindness does not have to be large or ribbon-wrapped. It is often small, the size of a lip gloss.

My having diabetes has allowed me to accumulate all sorts of kindnesses from countless numbers of people. When I’m feeling down or defeated, I gather up bunches of these thoughtful acts and gaze with wonder at them. These shining examples of human kindness are unexplainable and endless. I touch them to my heart and release them. They float skyward, illuminating the darkness with a million bursts of pure light.

Wit & Wisdom

I asked myself:

What small or large kindnesses have I received? Did I receive them gracefully?

Is receiving kindness helping me? Am I becoming less picky? Am I becoming less controlling?

Is receiving kindness now preparing me for the future? Will I have a chance to repay kindness? How might I repay kindness?

IHS DDTP

Chapter 8 - Meet My Perfect Family

Using Our
Wit and
Wisdom
to Live Well
with Diabetes

Barbara Mora

Chapter 8

MEET MY PERFECT FAMILY

Uncle Woody, a CHR, a Friend and a Mutt

"Native American
families have to be pampered,
ignored, obeyed, celebrated,
tolerated, laughed at and
loved. At all times, they
need attention!"

When I found out I had diabetes, I was told how to handle my eating and exercise. I was told to pay attention to my feet, my eyes, my kidneys, my heart. Almost every aspect of my life was brought up and examined, except one, the most important one, the granddaddy aspect of all Native Americans’ lives. Think of what you wake up thinking about, what you go to sleep thinking about. Think of what is most important to you: It’s your family!!!

Native American families are an entity all their own. They have a personality, almost their own heartbeat. They have to be pampered, ignored, obeyed, celebrated, tolerated, laughed at and loved. At all times, THEY NEED ATTENTION!

Think of these words: graduation party. Now imagine your family getting together for a graduation party. Is it like a picture found in Good Housekeeping magazine? Is there a big roast, and eight smiling faces gathered around, with Father just about ready to carve?

Or is your picture like mine: a hundred people packed into a HUD house. An auntie needs a "real fire" to bake the bread that needs a "special flour" or it will be worthless. Another auntie stands motionless, refusing to move until the inferior mayonnaise is thrown away and someone drives to town to buy the Best Foods mayonnaise, so she can make her one-and-only macaroni salad.

There are so many characters and things going on, to say it is a party does not do it justice. It is more like a military maneuver, involving a cast of thousands, taking place at several locations. There is a convoy of vehicles—boxes of supplies—huge, industrial-sized aluminum pots of food. I don’t think General Patton planned more than we do!

In my picture of a graduation party, the word, "Congratulations!" is not heard till the very end. The party starts with the words, "The fire’s not built?" Then, "These noodles are too soggy." (When this happens, the entire batch is dramatically dumped.)

Some people may get nervous seeing this picture. But this is the way my family is. It can be tense, it can be moody, but it has character, and it is definitely not boring.

How I Really Feel About My Family

For me to say I care about my family is like my saying I enjoy doing beadwork. It is a total understatement. Even the word "love" does not accurately describe how I feel about my family or doing beadwork. I am mad about doing beadwork. I am obsessed with beadwork. I crave beadwork. I must do beadwork. I depend on beadwork. I live and breathe beadwork.

That better describes how I feel about my family, how huge of an entity it is in my life, how much time, thought and energy I give to my family. My family is woven into all moments of my life. It is the force behind almost every movement, every muscle. Its energy and influence is released with my every heartbeat.

My family is woven into all
moments of my life. It is the
force behind almost every
movement, every muscle. Its
energy and influence is released
with my every heartbeat.

There. That’s how I feel about my family. And that’s why, instead of talking about my feet or my kidneys, I want to talk about my family.

Uncle Woody’s Money-making Scheme

Let’s start with Uncle Woody from Arizona. As a young girl, I loved having Uncle Woody visit. He had a money-making scheme. He drove his huge, black Buick from Arizona to Southern California and filled the trunk, back seat and passenger seat with oranges, floor-to-ceiling. When it rumbled into Bishop, we lined up along the driveway, wide-eyed as the black sedan with orange interior approached in a cloud of dust. When it came to a stop in our yard, billows of black, oily smoke rose up from the hood. Sitting there on a patch of dried grass, it looked like a huge charcoal fire with a center of brilliant orange flame. From the inside peered our Uncle Woody, sitting up straight and proud.

Uncle Woody intended to make a fortune selling oranges. There was only one problem. We could not afford oranges and neither could anyone else. Neighborhood kids came by, and Uncle Woody handed out oranges, one-by-one, setting them in the open palms of the children.

There were dozens of us, circling the Buick, dropping orange peels onto the ground. When the work of peeling was over, we laid down on the grass looking up at the sky, eating section after section, sweet juice dripping down our cheeks. We were orange rich.

Day after day, kids would
line up, Uncle Woody would
conduct the orange presentation
ceremony, and the level of
oranges in the Buck would drop.

Day after day, kids would line up, Uncle Woody would conduct the orange presentation ceremony, and the level of oranges in the Buick would drop.

On school days, he pushed the remaining oranges out of the way, and the younger kids climbed in. The older kids had to push the car to get it started. Uncle Woody would pop the clutch, and with a bang, a lurch and a huge cloud of black smoke, the Buick sprang to life, and we were off to school, sitting up straight and proud, just like our uncle.

When the oranges were gone, Uncle Woody would go back to Arizona. He never made a penny. He brought us happiness and returned to his home knowing that. He kept coming back, kept pretending he was going to make money, kept handing out free oranges, and kept driving back with a smile on his face.

I was so proud to be with Uncle Woody. When that big, black, belching Buick stopped at my school, kids stared at me. Maybe they thought the car was a wreck. Maybe they were looking at me with shock. But I thought they were envious. I thought Uncle Woody was the most generous man and my personal chauffeur.

How I felt about Uncle Woody is how I feel about my entire family. If strangers look at my family from the outside, it may be mysterious or even a little shocking. But strangers do not know about my family’s generosity. Strangers do not know about my family’s colorful nature, close to the brilliance of orange. Strangers do not know that the very same ramshackle sedan was the reason I could lay on a patch of grass, with sweet juice dripping down my face, and feel completely encompassed by love.

How I Feel About My Home

When we talk about Native families, that’s where we start and what we know for sure: Uncle Woody, generosity, color, laughter and unspoken love.

There was another family member, one who once came to my door with alcohol on his breath, visiting after a long absence. I hugged him and told him how glad I was to see him. Then with love and dug-in heels, I kept him from entering my house. I let him know that my house is a gathering place for people to laugh or listen, to be quiet or even disagree, but to do it in a spirit of wellness. I feel like my home is my temple, my sacred space.

With the help of the ceremonies,
the words came easily: "This
house has been blessed, and I
cannot let you in."

With him standing on the porch and me in the doorway, I felt I had all the powers of the ceremonies at my back, a force bubbling up from within my home, propping me up from behind. With the help of the ceremonies, the words came easily: "This house has been blessed, and I cannot let you in."

It was not a judgment call, but a simple statement of fact.

Having diabetes and getting older, and I hope wiser, has helped me view my home and my own self as sacred places. It has allowed me to open the door and let in healthy people. I start with the love of healthy family members like Uncle Woody. I politely close the door to those who, at the moment, are not healthy. And I look for other healthy people to invite into my home. Some of those I even call family.

A CHR Becomes A Sister

Renaming special people as family started with an amazing CHR, Arlene. She was in my living room, right at home, getting my blood sugar materials set out on the table. We were talking about diabetes, about my day, about how I was doing. Suddenly these words came out of my mouth, "I wish you were my family."

Arlene didn’t miss a beat and said matter-of-factly, "I am your family."

That statement stopped me in my tracks, and I began to understand how I could build upon my own family, upon the love of family members like Uncle Woody, and make it better by adding people like Arlene. With one switch of terminology, from CHR to Sister, Arlene became part of my family, someone I could depend on, call when I was down and out, show my soft, vulnerable side.

A Friend Becomes A Daughter

I tried my "build a better family" idea on my friend Annie.

I met Annie when she was in the AmeriCorps Program. She was dressed in a long, flowing skirt, and shoes that had lower heels than toes. I summed her up: "Another wannabe." I figured she would tell me that she had seen "Dances with Wolves" over 50 times, and that she had an Indian grandmother. But this is what she said to me, "I come from a long line of Jewish people, but we aren’t practicing." I liked her that instant.

As I got to know her, I began to appreciate her sincerity and her generosity. Countless times Annie has stopped by just to chat with me and see how I am doing. She has helped me with my computer. She set me up to make online plane reservations. She did not make them for me, but helped me figure out how to make them myself.

My relationship with Annie feels healthy. It feels like we respect each other. It feels like we are not enabling, but are helping each other be stronger and more independent. It feels balanced and well. Sometimes we say the words out loud: She calls me Mom, and I call her Daughter.

A Mutt Becomes My life Coach

There’s another main character in my life who could not be left out of a discussion of my family: Muzzie. Bob and I had been praying to find a small dog. On our wedding anniversary, my sister came through the door and plopped this black and white skinny thing in my arms and said, "Happy anniversary."

She was a little Heinz 57 Chihuahua mix. Muzzie liked to be smudged. Whenever Bob and I lit sage, Muzzie appeared, standing before our shins, chin slightly raised and ready.

We had 16 years with Muzzie before she passed away. It is still hard to think she is not here. She had developed this habit of knowing when I was sad. She would jump into my lap and put her paws on my shoulder, like she was hugging me. If I was having a particularly hard day, she would lick away my tears.

Muzzie taught me many lessons. She was a little thing, not more than ten pounds. We fed her leftovers, beef and chicken, an occasional piece of pork. She gulped the meat down, but would often stop before finishing the entire bowl. Then she would point her nose at me to make a point. "See! Never eat anything bigger than your head!" Muzzie taught me portion control.

Muzzie was brought into my life because Bob and I had prayed for her. She appeared, the perfect pet, the perfect addition to our family. Maybe that’s where building a better family starts: with a request, with a prayer for someone to come into our lives.

Maybe that's where building
a better family starts: with
a request, with a prayer for
someone to come into our lives.

What I Look For In Family

I learned so many lessons from my own family members like Uncle Woody, and from my "adopted" family members like Arlene, Annie and Muzzie. Uncle Woody taught me of the love and generosity that exists in my own family. It is the foundation I build on.

When I am building a better family, I look for people like Uncle Woody: positive, can-do, generous. I look for people like Arlene: supportive, kind, always there when you need them. I look for people like Annie: sincere, dependable, quietly strong and confident. And I look for people who have qualities resembling those of a 10-pound mutt: devotion.

For other family members, the ones who are stressed about macaroni salad or not well because of alcohol or drugs, my love and patience is constant. No matter what, they will always be family. I will not hesitate to give them a hand at a party, or a hug on my doorstep. We share a past, a present, a future. They teach me how to be graceful at family graduation parties. Some teach me to stand strong at the threshold of my home and say with utmost love, "You can come in when you are well."

What Uncle Woody Taught Me

Uncle Woody was an example of the vast love found in Native American families. When we have nothing, we give it away and it sparkles, like juice in the sunlight. Uncle Woody taught me that the span of our arms is endless. We can keep opening them up and welcoming more and more, welcoming friends and neighbors, an orange for all.

That is the essence of Native American families. They show us the way, set us up to see the next family member in a crowd, people like Arlene and Annie and even Muzzie, those who will give us support, respect and love—people who will not be the slightest bit surprised when we meet eyes and say, "You are my family."

Wit & Wisdom

I asked myself:

What qualities do I have in my family that I cherish?

What is a good way to keep myself well in my family?

Do I have friends I can rename as family?

How can I have healthy relationships with my "adopted" family?

IHS DDTP

Chapter 9 - The Sweat Lodge Might Help You

Using Our
Wit and
Wisdom
to Live Well
with Diabetes

Barbara Mora

Chapter 9

THE SWEAT LODGE MIGHT HELP YOU

How My Mother's Advice Gave Me Miracles

"In the Native way,
my mother didn't preach to
me. She didn't give me a long
list of ‘shoulds.’ She just said
one thing: ‘The sweat lodge
might help you.’"

In the summer in Bishop, California, a typical temperature is 105 degrees. On Mondays, some of us wake up smiling. Mondays are sweat days! It’s going to be 105 degrees. Perfect day to go into a sweat lodge. We’ll all be pre-heated when we go in. We are all excited. Monday is sweat day!

Thirty years ago, going into a steamy enclosure made of bent willow poles and covered with Pendleton blankets in the middle of summer would have been the last thing on my mind. I had come home to my mother with a baby in my arms and a marriage gone bad. In the Native way, my mother didn’t preach to me. She didn’t give me a long list of "shoulds." She said just one thing: "The sweat lodge might help you."

I knew I needed help but didn’t know where to look. I was desperately trying to hold it together. I was trying to be a Native person but didn’t even know what that meant.

The line of Native traditions and finding answers in the Native way had been broken. Several generations of Native people, including my grandmother and I, had gone to boarding schools. Many of the ways that we healed ourselves were taken away—the crystal clear path to wellness had been dug up and piled with debris. What she and many others came back with was a sense that something was missing, that there must be a better way to relate, raise families, find peace. But they weren’t quite sure what it was.

The sweat lodge and prayer are
the foundation upon which I
build all aspects of my health.
I can be healthy in mind, body,
spirit and emotion because I go
to sweats and because I pray.

Start With Prayer

Many times in my life, I thank my mother for saying those simple words: "The sweat lodge might help you." It has become the cornerstone of my wellness. The sweat lodge (purification ceremony) and prayer are the foundation upon which I build all aspects of my health. I can be healthy in mind, body, spirit and emotion, because I go to sweats and because I pray.

I do many things to be healthy but I always start with prayer. I walk every day. I have changed my eating habits and eat less sugar and fat. My portion sizes are smaller, about half what they used to be. I am a "doggy bag" customer when I eat out.

But these actions are just floating on the surface of my day. They are things my body does, steps it takes to be physically healthy. In many ways, these actions are easy. They are easy because the deep down driving force is grounded in prayer and tradition.

My day starts with prayer. I light the smudge and pray to the four directions, to the ancestors, people, animals and sacred sites. I pray to the Creator and to Mother Earth. I start my prayer by giving thanks. I am thankful for the blessings of Bob, my family, my friends, my health, my home and my community. Then I ask for help. I don’t ask to lose weight or be skinny. I ask for help to be a person with good health so I can take care of my family. Being thankful and asking for help sets the stage for me to look at all moments of my day in a positive, humble way.

Over and over, I am amazed at how prayer and going to sweats affect my life. They say that if you pray over water, it changes the molecules. With prayer, water molecules are moved, are changed into something more spectacular. I smudge and pray over my blood sugar monitor, my files of paperwork, my computer. I pray before every meal, blessing and improving the molecules that go into my body.

Learning To Sing, Learning To Cry

When my mother said to me, "The sweat lodge might help you," she wasn’t sure what a sweat lodge was. During that time, I think my mother was experiencing an awakening of our people. Three Paiute men from Bishop went to Wyoming to learn the sweat lodge way. They brought back the tradition, taught us to focus only on our prayers and sing with all our hearts. They taught us it is okay to cry in the darkness and high heat, that by the steam and tears, we will be purified.

I thank those three men (who have now passed away), and all elders and medicine men who work to keep our traditions and ceremonies alive. I think of them when I stand on the ridge of Chalk Bluffs, at the base of Mount Tom, or at any sacred site.

I go to these places to gather medicinal plants and basket making materials. Before I harvest, I offer tobacco, burn sage, sing and pray. I feel an instant connection to Mother Earth, the Creator and my ancestors.

I gently cut the willow branches,
smell them, put them in my
canvas bag. Time is slow and
focused. Gathering is not an
act of numbers. Gathering is a
meditation, like a prayer.

Each sprig of sage, leaf of tobacco, branch of willow is precious. I gently cut the willow branches, smell them, put them in my canvas bag. Time is slow and focused. Gathering is not an act of numbers. Gathering is a meditation, like a prayer.

The Beauty Of Beadwork

Doing beadwork is also like a prayer. Beadwork doesn’t just happen! It starts with a good heart. The tension on the thread, the motion of pulling, going back and forth, giving and taking, is like a dance. It shows what is going on in your heart: Be in a good way. Eat right. Don’t harm anyone. Keep the yard clean. Be humble and generous. Harbor no resentment. Put your life in order, like the order of the beads. Create beauty from the tips of your fingers. The finished piece of beadwork reveals your heart.

Experiencing Miracles

Long before I found out I had diabetes, I was praying and going to sweat lodges. When I developed diabetes, one of the first things I asked the doctors was, "Can I go to traditional sweat lodge?" The doctors didn’t know the answer. But I knew I could not be healthy without the traditional sweat lodge.

After my first sweat, I felt dizzy. I learned to eat a small snack before I went and to drink lots of water. Sometimes I test my blood sugar before I go in, to make sure it isn’t too low. I know if I get dizzy during the sweats, I can get permission to leave. I never stopped going to sweats. I go every Monday.

If I miss a sweat, I can tell right away. Small events seem overwhelming. The protection of the ceremony seems to be missing. Life seems a little harder. I seem to lose inspiration for my beadwork.

And so, with diabetes, and even in 105-degree weather, I go to sweats. This tradition, coupled with prayer and visiting sacred sites, keeps me protected. Sure there are difficult times. Life isn’t rosy. But if I fall, I don’t fall so hard. I am able to look at my problems with purpose and clarity. I am able to look at my beadwork and see the hidden pattern, the flow of color, the miraculous finished piece.

Prayer, sweat lodge, ceremonies, gathering and creating beadwork all set me up to experience life from a sacred place, to experience miracles.

Thank you, Mother, for your wise words. You were right.

Wit & Wisdom

I asked myself:

What do I need for my spirit?

What ceremonies, traditions, and art will help me? Who can teach me?

What can I do every day that will nourish my spirit? How shall I begin? When shall I begin?

IHS DDTP

Chapter 10 - The Secret Key to Living Well with Diabetes

Using Our
Wit and
Wisdom
to Live Well
with Diabetes

Barbara Mora

Chapter 10

WEAR PURPLE SHOES

My Secret Key to Living Well with Diabetes

"My phone rings, and
I don't answer. My fingernails
and toenails are painted.
I'm wearing purple sandals.
I wonder what my mother
would say if she saw me."

It’s a warm summer day, smack dab in the middle of pow-wow season. A dozen years ago I would have been running around, making pow-wow outfits and casserole dishes. Today I sit in the coolness of my front porch, alone, contemplating a willow basket. My phone rings and I don’t answer. My fingernails and toenails are painted. I’m wearing purple sandals and a crepe blouse. I wonder what my mother would say if she saw me sitting here in the peace and quiet, wearing a blouse and shoes that are not made of sturdy material. Would she say I am frivolous, maybe borderline useless?

My mother taught me how to be a good Paiute woman: Get up early and stay busy all day long, for every minute. Wear clothes made out of "good" material (doesn’t rip and you can’t see through it even if you hold it up to the brilliant sun). Wear practical shoes, ones that you can wear for many miles, if you suddenly find the need to evacuate.

Chickens Cause High Blood Sugar

I had been doing this my entire life, even the first few years I had diabetes. Then one day my blood sugar was very high and wouldn’t go down. I went to the doctor and had test after test. He asked me what I had been eating and what I was doing for exercise. He couldn’t figure it out. Then we came upon the answer: chickens!

Bob and I had a school chick-hatching program. We had thirty chickens. Every spring we would make sure the roosters were busy, and then we would carefully load up 48 fertilized eggs and deliver them to the school. Everything had to be timed perfectly. The roosters and the hens had to be in the right mood. The eggs had to be delivered to the school on the right day. The incubator lights had to be turned on immediately and kept at an exact temperature.

The chicks were to hatch just before Easter, so the children could see chicks pecking their ways out of the eggs. It was an uncompromising deadline: 48 chicks had to hatch before Easter or 48 children would be sad, very sad.

It was a huge responsibility Bob and I carried on our shoulders. We would give the children nothing less than the miracle of birth, just before Easter. Then one year the incubator malfunctioned, and the eggs didn’t hatch.

If we had been supplying eggs to Costco, that would have been no big deal, but 48 children were waiting. Forty-eight children already had chick names picked out. There would be no Fluffies, no Peepers, no Butterballs.

I had failed as a chick hatcher, as a school volunteer, as a daughter of a Paiute mother. My blood sugar soared.

The Doctor's Wise Words

When the doctor asked if I was under stress, I thought, "chickens." Of course there were other things going on: the phone constantly ringing and family asking me to make moccasins and birthday cakes. One such cake could not be measured in inches, it had to be measured in feet. In its center was a Navajo design. On its edges were miniature baskets. The cake took me three days to make.

I didn’t tell the doctor about the unhatched chickens and the Navajo design/Paiute basket birthday cake. What I said was, "Yes. I am feeling some stress."

And this is what the doctor said to me: "If you want things to stay the same, keep on doing what you are doing. If you want things to change, you have to change your behavior now."

"If you want things to stay the
same, keep on doing what you
are doing. If you want things to
change, you have to change your
behavior now."

The doctor gave me permission to do something I had never done: say no to people and take time for myself.

That same day, I started on a new path. I got home and the phone rang. I didn’t even think of not answering it. I automatically picked it up and listened to the request: "Barbara, are you going to be at the baseball game?"

This time, instead of saying, "Yes, what time?" I tried new words: "I’m sorry, but my doctor told me I have to rest, and I’ll have to miss the game."

By the end of the day, several more requests had been phoned in: "Barbara, can you come to the school play? Can you make your fry bread? Can you make a pow-wow dress?"

I answered each request in the same way, "I’m sorry. Not today. I must rest. The doctor said so."

My voice was unsure because these words had never come from my mouth. They were like four-letter words. I think the people on the other end of the line must have gasped. Barbara said no! What’s up with that? Can she do that? I’m sure my voice sounded small and higher than normal, like a little girl unable to open a jar of jam: "I can’t."

Will I Still Be Loved?

I, too, gasped. I thought my identity hinged on my saying yes to everyone. Barbara can do. Barbara can make a cake, moccasins, pow-wow dress, fry bread. Barbara is a good daughter, sister, auntie. I realized my life had been about proving to others that I was a good person. My actions showed how I identified myself, showed my limited ability for self-love. I had to make all those things so that people found me lovable.

I had to go on a long, inner
voyage. I had to start saying,
"Not today," and pay attention
to how I felt about saying that.
Would people still love me if I
didn't do things for them?

This realization didn’t come in an instant. I had to go on a long, inner voyage. I had to start saying, "Not today," and pay attention to how I felt about saying that. Would people still love me if I didn't do things for them?

But the doctor told me to rest and take care of myself. Like most of the critical points on my journey with diabetes, I thought about my mother. She took a different path and kept catering to people around her. She died before she needed to. I want to live a long time, so I can keep giving to my family and community.

The Big Deal Of Napping

My different path started with saying, "Not today. Doctor’s orders." It started with a simple task: taking naps.

For some people, taking an afternoon nap is no big deal. But for me, daughter of a Paiute woman, taking a nap was almost a sin. Napping is a near-public display of how, during two hours of prime-time life, you have nothing useful to do but sleep.

In my head reeled the list of
things I needed to make:
cake, moccasins, pow-wow
dress, fry bread. Instead of
doing those things, I was lying
on my bed, thinking about how
I should be doing those things.

I had no idea how to nap. The first few times, I laid on the bed, arms at my side, stiff as a board. In my head reeled the list of things I needed to make: cake, moccasins, pow-wow dress, fry bread. Instead of doing those things, I was lying on my bed, thinking about how I should be doing those things.

Bob helped me. He taught me how to relax. He taught me to start with my toes. Relax my toes. Relax my feet. Relax my ankles. It was hard not to hold my breath as I was doing this. But with practice, I started to relax.

Muzzie helped me. She was a master napper. She knew exactly what I was doing when I headed for the bed in the middle of the afternoon. "Finally!" she seemed to say. She hopped on the bed and made herself at home in the crook of my arm and was instantly asleep. The good Paiute/Dinè dog owner could not awaken her pet. So I lay there, strapped down to the bed by this ten-pound mutt, and finally, I slept.

I bought books on meditation. I learned how to look at my thoughts, the jumble of them. I learned how to observe each one and observe how my body tensed up. I learned how to let the thoughts go, as if they were leaves dropping onto the surface of a stream. I watched them drift away, and I slept.

So with the help of Bob, Muzzie and meditation, I learned how to take naps.

Other Tricks I've Learned

Slowly I became a master at taking naps. Now I think I could get a black belt in napping. I mastered other self-care tricks. I take time to paint my fingernails and toenails. I go for a walk every day. I might walk to the thrift shops downtown. I stop at coffee shops and have a fancy cup of coffee, alone.

I screen my phone calls. Many times I don’t answer my phone. I call people back when my schedule is open.

Diabetes Gives Me Permission

At first I was overwhelmed with guilt by my new behavior. But then I started to look at it in a positive way. I was learning about self-love. I was learning that if there were a silver lining to the dark cloud of diabetes, this was it. Of course, I wish I did not have diabetes. But having diabetes gave me the opportunity to take care of myself. Diabetes gave me a reason to paint my toenails, screen my phone calls, go for a walk, take a nap. Diabetes gave me permission to say something I might not have ever been able to say. "I’m sorry. Not today. I have to rest, walk, be alone. I have diabetes."

Compared to a dozen years ago, my life is calm. There aren’t 30 chickens running around. There are two. My phone rings, and I don’t answer it. I’m busy making a basket.

Having diabetes gave me the
opportunity to take care of
myself. Diabetes gave me a
reason to paint my toenails,
screen my phone calls, go for
a walk, take a nap.

Sometimes I make bookmarks to give away. Instead of rushing around making pow-wow dresses and fancy cakes, I leisurely make bookmarks. I give them to my loved ones. I adorn the little rectangles with feathers and beads. My feelings of peace and good wishes are captured between the lamination. See, I’m still worthy and lovable. And I’m well.

Being Well And Being Loved

Having diabetes taught me many lessons. There will be more. The latest one I learned is that I can be good to myselfand still feel useful and loved. Even though I screen my calls,and don’t answer my door, I am a lovable person, and I am loved.

I am sure of this. Once while reflecting on my diabetes journey and all the choices I have made, I felt my mother standing beside me. I was wearing purple shoes and was feeling refreshed from an afternoon nap. I felt my mother place her hand on the back of my elbow and gently squeeze. It was her sign of approval. I am sure of this.

Wit & Wisdom

I asked myself:

Why is it important for me to be well?

Can I say no and still be loved?

How can I be useful in a peaceful way?

What can I do for myself today to be well?

Barbara Mora Biography

Editor’s note: Furnishing information for this biography was difficult for Barbara. She agreed to share her life story because she hopes to help others. Barbara provided this biography as a way to honor Native people who have suffered, as a way to help people heal.

Barbara Mora was born Barbara Bowman on January 10, 1947, in the heart of the Bishop Paiute Reservation in Bishop, California. Her early childhood was a full, rich experience of reservation life. Typical of the time, her family was large. There were 11 children in the family, including two who died in infancy.

The family was considered poor by non-Indians who had indoor plumbing and a bedroom for each child. Barbara thought it was just the Bishop Paiute Indians who were "poor." It wasn’t until later in her life that she discovered other Indians were raised in similar material poverty. It was common that Indian fathers could not find jobs that paid enough to support their families.

Barbara's Father

Barbara’s father, Alvin Bowman, was born near Tuba City, Arizona, to parents who spoke only their native language Dinè (Navajo), and lived in a traditional house called a hogan. He grew up in a time of very limited educational opportunities for Indians. Some of his sisters and brothers were made to go to boarding schools and others chose to go. Alvin desperately wanted an education. But his parents kept him at home to herd the family’s flock of sheep.

One day when he was 12 years old, he told his parents he was leaving and walked to Tuba City Boarding School. He was put in a beginning grade. He was much older and taller than other boys in that grade. The other boys laughed at him for his raggedy clothes and his long hair worn in the traditional Dinè style called a tsyéél, a style where the hair is pulled away from the face, and fastened in the back by white wool yarn. School officials cut his long hair. At the school, Alvin learned two things: how to write his name and how to repair shoes. He left after a few years with a third-grade education.

When World War II broke out, two brothers with better educations joined the Army. Alvin was too young and had not graduated grade school, so he was not allowed to enlist in the military, and instead joined the Civilian Conservation Corps (CCC).While Alvin was traveling with the CCC, he came through Bishop where he met Barbara’s mother, Pauline, and they married.

Barbara's Mother

Pauline Harrison came from a family of six. Her mother, Amy Bulpitt, was born at a time when the government was just starting to send Native children to boarding schools. Grandma Amy was sent to Stewart Indian School in Carson City, Nevada. She was a small child when she left Bishop. She didn’t return until she was about 18 years old. During her time there, she was not lovingly nurtured but raised by military rule and corporal punishment. She was one of many Native children who were raised in boarding schools until they were 18 and then let loose, just like prisoners set free. These young people started their lives with little education and a void of loving parental guidance. They often possessed only a trade skill, such as being a "domestic."

At boarding school, Amy met Barbara’s grandfather, Sam Harrison, who was a Nevada Indian. The family never knew his specific tribe. When the couple was released from Stewart Boarding School, they married, moved to Bishop and started a family.

Barbara’s mother did not enjoy talking about her childhood or any early memory of her family life. She was very selective with the few recollections she shared with Barbara and her siblings and never shared the saddest memories.

Barbara's Parents Raise A Family

It was with these unhappy memories, and lives negatively impacted by boarding schools and inadequate education, that Barbara’s mother and father became a couple and started raising their own family. Despite the adversity, they were determined to give the best to their children.

The Paiutes and the Dinès are two separate tribes with many different beliefs. Both parents tried to give their children the most positive traits from each tribe.

They agreed not to let their children speak Paiute or Dinè at home, only English. They bought used books and magazines at garage sales to encourage the children to become more proficient at English. Over the years, Barbara’s mother accumulated a nearly complete set of encyclopedias from garage sales. Barbara spent many hours reading the mismatched books.

Barbara was not allowed to watch frivolous TV shows. Even as an adult, Barbara remembers her father changing the TV channel to a news or nature show saying, "Daughter, watch something educationable," (his Dinè version of the word educational).

Tight Braids For School

In 1952 Barbara started kindergarten in Bishop. She went to school with her older sister Jeannette. For economic reasons, her mother dressed them identically. Some people thought they were twins. Their hairdos were the same, always squeaky clean, washed with Tide laundry soap because it was affordable. The sisters’ hair was glossy black, parted in the middle, with two braids. Barbara remembers her hair being pulled so tight, her eyes felt slanted.

During this time, Barbara’s father worked in construction, building roads around Bishop. But steady work was not available. The parents struggled to pay bills and buy necessities. In 1959 the family moved to Arizona with high hopes of getting steady work and eating regular meals.

Moving To Arizona

Barbara was eleven years old when her life changed dramatically. Arizona provided fewer jobs, and the family descended into extreme poverty. They fell behind on their truck payments. But they learned that the truck could not be repossessed if someone was in it. So that became the family plan—certainly there were enough children to keep vigil.

The older children had to stay in the truck longer than the younger kids. Many months went by that the truck was kept safe by having a child or parent occupy it, day and night.

Barbara’s family still argues about how the truck was lost. The older children were attending school in Tuba City, so Barbara didn’t actually see it happen. She guesses that one of the younger children stepped out of the truck to play, or just wandered off, and the truck was repossessed.

Barbara’s father started walking to find jobs. Her mother became ill, exhausted from the stress of raising nine children with little money. Everyone helped with the chores. They cooked their meals on a wood stove. They did laundry by hauling water to the house in big metal barrels. On Saturdays and Sundays, everyone did laundry and ironed clothing with heavy irons heated on the wood stove.

Boarding School

It was after the birth of one of Barbara’s younger brothers that her mother became gravely ill with pneumonia. She was hospitalized. Her father could not find work. Simply, her parents could not feed or clothe their children.

The older children were sent to boarding schools. One brother was sent to Anadarko, Oklahoma. Barbara and her older sister, Jeannette, were sent by Greyhound bus to Chilocco Boarding School in Oklahoma. For this 14-year-old girl, the school was like a cold, alien prison. She had no idea what the school would be like, but got an idea by what she remembers as the "you are not welcome to boarding school" speech.

In the speech, new students were told they were far from home, with no one to depend on but school officials. She remembers someone yelling at them that they were no longer on "Indian time" and that they would be expected to be on time, or would suffer dire consequences. Barbara was not used to being yelled at and wondered what she had done wrong. She had thought boarding school was for learning, not being yelled at, and that the speech maker must have made a mistake. Barbara was confused and frightened.

Barbara and her sister were immediately separated. Children from the same tribe were not allowed to socialize with each other. It was forbidden to speak Native languages.

Barbara's Artwork

For the first few months Barbara tried to stay positive. She loved to paint watercolors and draw pencil sketches of life on the reservation. Soon a woman director of the school took interest in Barbara’s artwork.

She told Barbara she was "taking her under her wing," and collected all of her paintings and drawings to keep in a safe place. Barbara never saw her art again. The director asked for more, but Barbara refused. Soon Barbara found herself cleaning bathrooms in the dormitories while the other girls went to eat. She was secluded from others. She was told that her sister didn’t want to see her anymore. Her sister was told the same. During this time, her brother sent her letters, but Barbara never received them. When she wrote to her parents, her letters were read by the director and rejected if they contained anything about the chores or seclusion.

She started to get ill. Periodically, the director asked her to paint for her and Barbara always refused. She kept doing the chores she was given. One day the director gave her a butter knife and told her to get on her knees and remove chewing gum from the floors of the dormitory. The students had never seen anything like that and stared at Barbara. But she was told to not talk to anyone. The students were told not to talk to Barbara because she was being punished.

The punishments varied from month to month and they always ended with the director asking Barbara if she were ready to paint. When winter came, Barbara was confined to the school’s basement to mop excess water. She was constantly wet and cold and became more ill. She asked to see a doctor but her request was refused. She remembers a critical moment, when she was so light-headed she thought she could float out of her body. She sat upon a bucket, and considered going to sleep and never waking up. To this day, she remembers a voice inside her saying, "You can leave this life now, or you can rescue yourself. No one can help you but yourself. Your parents and family members don’t know what’s happening to you. They cannot rescue you. You must get yourself away from here."

Barbara's Escape

Barbara knew what she had to do. She climbed the steps out of the basement, and went straight to the director and told her she was ready to paint. Immediately she was allowed to rest and began eating meals with the other girls. She painted and gave her art to the director.

Barbara had a plan to escape. The school had a summer work program. Girls were placed as live-in babysitters and domestics for families in Chicago, Illinois. Barbara kept painting and drawing and being a model student. She asked the director over and over to be considered for the summer work program. When the spring classes ended, the director granted her request and sent her to a family in Chicago. No one in the family was allowed to talk to her, and her loneliness grew.

She saved the small amount of allowance she was given. Just before the boarding school was to start in the fall, Barbara took her small savings and ran away.

Barbara Marries And Has A Son

In Chicago, Barbara met a man who helped her hide. The two kept moving so Barbara would not be found and married in 1965. Her husband immediately became abusive. In 1966 Barbara gave birth to her son Alfonso. He was healthy, happy and the light of her life. Barbara’s husband was not happy to have a child. She endured many severe beatings, and they divorced in 1975.

A Beloved Sister Dies

During the same year, Barbara heard that her beloved sister Jan had died. By the time Barbara got home, her sister had already been buried. She had been killed by her abusive husband. She left behind three children.

Struggles Continue

In 1976 Barbara met Bob Mora. They married in 1978, and Bob became a major influence in her wellness journey. Barbara thought leaving the abusive relationship, and starting over with her son and supportive new husband would start her on a positive life. But the struggles continued.

Alfonso was resentful that Barbara had left his "real father." He grew into a troubled teenager and started using drugs and alcohol. He was in and out of jail. He was in a serious car accident which left him with a head injury. He was diagnosed with schizophrenia due to head trauma and drug use. He blamed Barbara for his unhappiness. One day, Barbara received a letter from Alfonso through his court-appointed guardian stating that he no longer wanted any contact with Barbara.

In 1990 Barbara’s brother died of acute alcohol poisoning at the age of 28. Barbara and her parents identified the body. Five years later, Barbara’s mother died from diabetes. A year later, her father stepped in front of a truck and was killed. Barbara identified his body.

Returning To Tradition

Right after her father died, Barbara found out she had diabetes. She had been depressed for many years, and getting diabetes sent her into a deeper depression. But Barbara says getting diabetes on top of the other traumatic events of her life forced her to seek help. She desperately needed answers and relief from almost constant emotional pain. With the aid of her husband, Bob, and supportive friends, family and health staff, Barbara started to overcome depression and get well.

She returned to traditional ceremonies, songs and teachings. She found help and healing in the traditional ceremonies of the sweat lodge. She sought out others who were Native and, in many cases, endured trauma even worse than her own.

She found the sweat lodge ceremonies worked for her and other suffering Natives when nothing in the modern world did. When she first started attending sweat lodge ceremonies, she was struck by the sound of people praying out loud while the singing was going on. She heard women weep, asking for help for their sons or daughters, those in trouble, those in prison.

Barbara joined them in asking the Creator for help.
She says she is blessed to have received that help.

Wit & Wisdom

In 2004 Barbara wrote an article about beading and wellness for the Indian Health Service magazine Health for Native Life. Because of that article, she was asked to write this book about diabetes and wellness. The drawing on page 53 is the first art that Barbara has produced since boarding school.

Barbara lives in Bishop, California. She is a certified Pilates instructor and teaches community members beading, shawl making and traditional basket weaving. She is active in tribal politics, and speaks up about the need to help people return to wellness and the importance of caring for elders and children. She speaks at conferences about wellness, healing and diabetes. She is writing her second book, an autobiography. Barbara has found that writing and talking about her struggles have helped her to heal.

"I have been there, crying,
asking Creator to have pity, help me.
I have been so blessed
to have received that help.
I have peace and certain knowledge that,
should hard times come in the future,
and they will, I will never be alone or helpless.
When the sweat leader lifts the dipper
of water to pour on the hot, heated stones,
I see him lifting a Grail of Goodness
for all of us to share.
My heart no longer hurts.
Aho. Aho."

(Thank you, thank you, Creator)

IHS Division of Diabetes