by Angela Blake, RN, MSN, Diabetic Educator
Includes photo of Daisy Adaline Parker-Williams.
The homework assignment was, simply: "Write about someone you admire. DUE MONDAY!" The classroom filled with excitement as my sixth grade classmates brainstormed ideas about heroes and "s/heroes" in every field of human endeavor: Frederick Douglass, Harriet Tubman, Martin Luther King and Rosa Parks were just a few names bandied about. The bell rang. As for me, I knew exactly who I would write about -- "mi abuela" -- my grandmother, Daisy Adaline Parker-Williams.
Once upon a time in 1945, the face of diabetes mellitus looked different. It was diagnosed differently, treated differently, talked about ... differently. Adults who were newly-diagnosed with diabetes were placed into a neat, descriptive, cookie-cutter category - "over 30, adult-onset, type 2, non-insulin dependent."
Daisy was the square peg in a round hole. In 1945, at 40 years of age, she was diagnosed with type 1 diabetes mellitus. The beta cells of her pancreas did not secrete insulin - the hormone that helps the body use glucose for energy. And so, for the rest of her life, she was relegated to daily injections of the replacement hormone.
My opponent nervously shuffled his feet from side to side as my 6th grade English teacher articulated the word, "fa mil ial," slowly and methodically. This pensive moment was the tiebreaker. I won the class spelling bee that year, hands down. Like the word "ge net ic," "familial" was a term I knew quite well. I recognized it as a "condition characteristic of some or all members of a family." Grandma and her 13 brothers and sisters - my great uncles, Andrew, Arnette, Henry, Johnson, Lewis, Percy and Peter and great aunts, India, Katie, Libby, Lillian, Naomi and Phyllis were all type 1 diabetics.
Unfortunately, none of the Parker historians know whether it was my grandmother's father, Henry Harrison Parker or her mother, India Luetta Humprey-Parker, or both, who carried the trait. One thing we do know for sure is that before co-discoverers, Frederick Banting, Charles Best, John MacLeod and James Collip isolated insulin in 1921-1922, the prognosis for individuals living with diabetes mellitus was extremely bleak.
I was the devout granddaughter who visited the Tar Heel State every summer -- all summer long -- until I was 17 years old. Of course, no one in Jones County called "diabetes" by its formal name. Informally, we knew it as sugar. You would hear phrases like, "I've got a touch of sugar," "My sugar is up" or "My sugar is acting up," in conversations. Even now, the elders in the community hold steadfast to the same entrenched belief: "Sugar causes sugar."
I was certainly convinced at the time. It would be many, many years before I could recite the definition of diabetes mellitus: "a chronic metabolic disorder characterized by elevated blood glucose levels due to absolute or relative insufficiencies of insulin."
Adaline was born and bred in the "apartheid" south. Buses, drinking fountains, hospitals, housing, restaurants, restrooms and schools were "separate but equal." Southern states functioned under strict racial divide.
My grandmama hailed from Haw Branch, North Carolina -- home of the Cherokee Nation -- 13,079 tribal members strong! Besides being of African-American ancestry, it was always said, though never confirmed, that she was part Cherokee. Diabetes, like many other disorders, disproportionately affects members of the African-American and Native American communities.
Daisy Adaline Parker was a college-educated, English teacher who married a simple, God-fearing man -- my grandfather, Leo Vanderbilt Williams. Thirteen children were born as a result of this union. The pair lived out their entire, circumscribed lives on the outskirts of rural Trenton, North Carolina.
Healing Beliefs
We treated whatever signs and symptoms we had with herbs and spices that grew
on bushes and trees around the house. I can recall seeing my grandparents steep
and simmer leaves, roots, and, what looked like twigs in water to either cure
or ease certain ailments. Arthritis, colds, gout, hypertension, shingles and,
yes, even diabetes was placated with either cayenne pepper, cinnamon, garlic,
ginger, parsley, sage, sassafras or thyme - to name a few. Back pain? Sore throat?
Muscle aches? A hefty tablespoon of cod liver or castor oil was the mystical,
magical cure-all.
Quinine was used exclusively by midwives to alleviate labor pains. For the more complicated antidotes, the old "conja" (conjure) woman was consulted. It was rumored she knew how to cast spells and ward off evil spirits. She lived in the back, back, backwoods. On the one occasion we visited her, I was told to remain in the car. Culturally speaking, if there was no herbal cure for the ailment and you had to see a doctor, it was a sure sign you were dying.
The local centenarians -- elders over 100 years of age -- had a bit more knowledge about what proportion of herbs cured which conditions. Granny would demand, "Don't drink orange juice while you having your cycle (menstrual)." She could never explain why. A lot of the "rationales" had been lost as the remedies transcended the generations. I was 35 years old when I read an article that confirmed orange juice as a natural oxytocin -- it causes the uterus to contract. One thing a woman does not want during her menstrual cycle is more cramping. There was scientific validity to what grandma was saying, after all!
I am not really sure who diagnosed my grandma with diabetes. Most likely, it was the town doctor. His office was 13 long country miles away. She saw him once, maybe twice a year. He was the cardiologist, gynecologist, nephrologist, neurologist, pediatrician, podiatrist and oncologist, all wrapped up into a carbon copy of Colonel Sanders (KFC). Grandmother would complain all week long about various aches and pains but she would never discuss any major concerns, ask questions or describe symptoms that had cropped up since her last visit. "How ya doin' there, gal?," he would say while he patted her on the head. She'd reply, "Oh, mighty fine, doctor. Mighty fine."
I was the "uppity" northerner, determined to advocate on her behalf.
When I'd hear something contrary to what I knew to be fact, I'd intervene. "Doctor,
that's not ..." Granny would dart that "look" in my direction.
I knew to be quiet. "Don't dispute
his word. You'se just a child," she'd tell me when we were alone. A poke,
here. A look, there. A question or two, later, and the comprehensive physical
"examination" was over. It lasted all of five or ten minutes. Many
of grandma's diabetes-related complications could have been prevented or delayed
had her issues been adequately addressed.
Twelve of Daisy's 13 children were delivered at home by "grassroots" midwives. Good Shepherd Hospital was designated "colored only." After the Tuskegee Syphilis Experiment (1932-1972) was exposed, in general, African-Americans did not frequent doctors' offices or hospitals, because they did not trust the medical establishment or its motives. My grandmother's youngest child, my Aunt Carolyn, was the only Williams sibling born in a hospital. She was delivered vaginally, weighing in at a whopping 13 pounds. Her twin died. Grandma was 40.
"Fetal macrosomia" -- macro meaning, "large" and soma meaning "body" -- is the term associated with newborns who weigh more than 4000 grams or 8 pounds, 4 ounces at birth. Excess glucose crosses the placenta -- the organ that nourishes the developing fetus in the uterus -- from the mother. The fetal pancreas senses the high glucose levels and converts the extra sugar to fat. The subcutaneous fat is stored on the neonate's body. Researchers have surmised that macrosomic babies will have abnormal intellect, grow up obese, and develop diabetes. In reality, Aunt Carolyn was a bright, college-educated woman with savvy business sense. She was, however, overweight as a teen and grossly obese as an adult. Auntie was diagnosed with type 1 diabetes in her early 40's. The prevalence of "large-bodied" babies can be significantly reduced with tight -- near normal -- maternal blood glucose control.
Diet Management
Daisy weighed approximately 230 pounds and stood 5 feet, 5 inches tall. She
was 80 pounds overweight, by most height and weight standards. Her body mass
index (BMI) -- the measure of her weight relative to her height -- tallied as
38.3. Individuals with a BMI of 30 or greater are considered "obese."
She wore a size 22 dress.
BMI Weight Status
below 18.5 underweight
18.5 - 24.9 normal
25.0 - 29.9 overweight
30.0 and above obese
Source: Centers for Disease Control and Prevention
My grandfather owned acres and acres of farmland. My grandparents sowed and
harvested a vegetable garden. We ate butternut squash, collard greens, corn,
field peas, kale, mustard greens, okra, rutabagas, stringbeans, sweet potatoes
and tomatoes, year round. There was a peach, pecan and plum tree in the back
yard and an apple and a pear tree in the front yard. IGA, Winn Dixie and Piggly
Wiggly - I knew all of the names of the grocery stores in town, but except for
buying an occasional
loaf of bread, we did not frequent supermarkets. Eating out at a diner, a fast-food
establishment or a restaurant was, also, very uncommon. We ate, primarily, from
the land.
Our main meat source was pork. My grandparents raised 200-250 pound pigs for slaughter. We consumed everything from the "rooter to the tooter" -- Pig ears, pig tail, pig tongue, pig feet, pork chops, pork sausage, pork shoulder, ham, hog maws, chitterlings, pork rinds, cracklings, spare ribs, souse, tripe and bacon. If it came from the portly swine, we had eaten it. There wasn't any part of this slew-footed mammal that did not get used in some manner. We had no idea the saturated fat content of the "other white meat" could catapult the "bad" cholesterol -- low density lipoprotein (LDL) -- to levels well above the recommended maximum, 100 mg/dL.
Editor's Note: The LDL cholesterol recommended maximum for diabetics has just recently been revised downward, to 70 mg/dl. The general maximum remains 100 mg/dl.
What is LDL (low-density lipoprotein) cholesterol? What is HDL (high-density lipoprotein) cholesterol?
This type of cholesterol is referred to as "bad" cholesterol. It collects inside the walls of the arteries and can contribute to the formation of plaque build-up known as "atherosclerosis." This type of cholesterol is referred to as "good" cholesterol. It is a type of fat in the blood that helps to remove LDL cholesterol particles from the artery walls and transport them to the liver to be disposed of through the bile, preventing the fatty build up and formation of plaque.
Goal: 100 mg/dL Goal: 45 mg/dL (men) 55 mg/dL (women)
LDL levels should be low. To help lower LDL levels, ... HDL should be as high as possible. To help raise HDL levels, ...avoid foods high in saturated fat, dietary cholesterol and excess calories increase exercise maintain a healthy weight. Source: www.americanheart.org
Chicken was just as popular as pork. This former school teacher could ring
a "yardbird's" neck, chop its head off, de-feather it and have it
frying in a "spider" (skillet) before you could say supercalifragilisticexpialidocious!
Beef was a rarity. 'Coon, deer, fish, possum and rabbit were reserved for special
occasions and celebrations. Except for Spam, yes, Spam, we did not eat from
cans. "Everything from scratch" was the mantra. Breakfast, lunch and
dinner were served with white, long grain, Carolina rice, without fail.
Daisy baked biscuits and cakes and fried chicken and fish with lard. Lard is described as "rendered and clarified white pork fat." It was sold in jumbo-size, plastic tubs. One tablespoon contains 116 calories, 13 grams of fat and 12 mg of cholesterol. We used this artery-clogging substance for decades. Saturated fat - the very unhealthy fat -- should be less than 7% -- 10% of total calories. We were maxing out our daily fat intake in one meal. Who knew?
We were the sweet potato pie, cake-of-any-kind, Baby Ruth, Butterfinger and peppermint candy "aficionados." Every now and then, Grandma would deviate from her -- correction -- our usual, "empty-calorie" vices and help herself to a small bowl of Dolly Madison's Neapolitan ice cream and a diet Pepsi. I suppose she thought that the diet Pepsi would cancel out the caloric value of the ice cream.
Exercise
Our day began at 5 am when the cocked crowed, and ended at 6 pm, just before
dusk. Everyone had chores to complete. Granddaddy saw to that. "Idle hands
are the devil's workshop," he would reiterate. The chickens, dogs and pigs
had to be fed. The chicken coops and pig troughs had to be cleaned. Leaves raked.
Laundry washed. Food cooked. Weeds chopped. Wood chopped. Beds made. House swept.
Gardens tended. Vegetables picked. Lawn mowed.
My grandfather raised and harvested tobacco. For as far as the eye could see, there were rows and rows of tobacco stalks. The stalks were stripped of their leaves. The leaves were hung on racks to dry and, later, shipped off to market. The task required a great deal of bending, lifting, pulling, shifting, stooping and tying. We got more than the daily, ADA-recommended 30 minutes of moderate activity. These activities were our versions of upper and lower body, low impact aerobics. Exercise can improve glucose tolerance and insulin sensitivity, reduce body weight, increase the "good" cholesterol (HDL -- high density lipoprotein), strengthen the heart, aid in reducing bone loss, improve mood and aid in relaxation.
Testing
The first blood glucose meter -- the Ames Reflectance Meter (Mode1 5541) --
did not surface until 1969. Even after monitors became available without a prescription
in 1971, Adaline never, ever owned one. She would test her urine for glucose,
once in the morning by using a thin, plastic, padded test strip bought in a
canister of fifty (50) from Eckerd's Drug Store. After she dipped the test strip
into her urine sample, the pads changed color -- indicating how much glucose
was in the sample. She would compare the resulting color to a chart of colors;
each color indicated a level of glucose. Her results were rarely ever negative.
Studies now show urine testing for glucose is not an accurate way to measure how much glucose is in your blood. A sample of urine is often stored in your bladder for several hours before you test it. Glucose does not present itself in urine until it is 180 mg/dL, or greater, in the bloodstream.
Insulin
We had tuned out the constant rattle and hum of our secondhand Frigidaire. The
rickety refrigerator was too cold in the winter and too hot in the summer. There
were no shades of gray. The freezer portion had to be defrosted just about every
other day. It was in this refrigerator Granny stored her insulin. I know, now,
temperature extremes should be avoided and insulin definitely should not be
frozen, because it can cause improper resuspension but back then ... we thawed
out many vials.
She always insisted her insulin be kept in the Frigidaire. She was never taught that a vial of insulin, in use, did not need to be refrigerated, as long as it was used within 30 days. I recall the cloudy, sterile suspensions of zinc insulin crystals and protamine zinc in buffered water had their own territory in the left rear of the refrigerator. The vials were labeled with a capital "N" - N for NPH, an intermediate-acting insulin. I uncovered the meaning of the acronym; N stood for neutral, P for protamine and H for Hagedorn, after its discoverer, Hans Christian Hagedorn (1888-1971).
Grandmother had smooth, blemish-free skin. Her abdomen, arms, buttocks, legs and thighs were as tough as rawhide. I had to give her injections at a 90-degree angle with added speed and force, otherwise the needle would barely pierce her skin.
There was no such thing as "garbage pick-up service" in the country. We burned all our garbage in a designated spot out in the field. Discarded needles were burned, as well.
Complications
It was 1973. I was about 14 years old when my grandmama showed me the infected
ulcer. She was in her flower garden, chopping up weeds with a garden hoe, and
she had lacerated the underside of her right, great toe. Her sandals were open-toed.
First and second rule-of-thumb in foot care, don't wear sandals or other open-toed
shoes and don't wear shoes without socks! Hindsight, they say, is 20/20.
She was not informed. Diabetes education was extremely lax. Her family knew even less. Was she checking her feet -- top and bottom -- every day? No. Did she consult her physician about the ulcer? No. It was simply "a cut" to her, and she tried to treat it herself with mercurochrome, a liquid antiseptic and popular "country cure," but to no avail. At her son Alphonso's urging, she finally saw a doctor. A year later, there was talk of "gangrene" (tissue death). High blood glucose levels had, apparently, damaged the blood vessels and nerves in her body. Damage to the blood vessels meant her feet were not getting an adequate supply of blood.
People with diabetes mellitus are particularly prone to developing non-healing wounds and are at greater risk of developing complications from those wounds, if they are not properly treated. The skin on her foot was dry and leathery. Sensation was null. The nerve endings within the skin were destroyed.
Upon arrival that next summer, the first thing I noticed was a flesh-colored artificial leg. The prosthesis was propped in a corner. A below-the-knee amputation had been performed. The adults knew. The grandchildren were "spared" the news. I was traumatized. Grandma adjusted remarkably well. She ambulated with a cane. She traveled more than ever. Her children lived in D.C., Wisconsin, Massachusetts and New York. She would purchase a Greyhound bus ticket in a heartbeat and take off for a few months to a year.
Five years later, a second, below-the-knee operation was performed, on her left leg -- once again, in New York City. This time, there were complications during her recovery. She was in and out of consciousness.
Her lab values fluctuated from good to bad to worse. Everyone took turns sitting vigil in the hospital. Grandmother's son, my Uncle Linster, tape recorded the voices of family members at just about every family gathering. Pre- and post-surgical amputation was no different. Every time I want to hear Granny's voice, I play one of several dozen cassette tapes. I hold the recordings near and dear to my heart, today. Her travels slowed down considerably, because the prosthetic legs irritated her stumps. Her gait was unsteady. She used a cane walker or a wheelchair to ambulate. She was a lot more sedentary, and, as a result, she gained weight.
I was about 21 when my grandmama's eyesight began to fail. She was an avid quilter and milliner -- she sold and made hats. When she wasn't gardening, she was quilting. When she wasn't quilting, she was making hats. When she wasn't making hats, she was gardening. What would she do without her sight? She was happiest when she was engaged in these activities. My heart bled.
The ophthalmologist prescribed a new set of lenses for her. I am almost certain the eye exam wasn't dilated. A dilated eye exam should be performed at least yearly. Her lenses were three times thicker than the ones she wore the year before. Her vision was 20/200 with correction. She was -- in medical terms -- "legally blind." We knew the layman's term, "eye disease." Her diagnosis was, actually, "retinopathy" -- retino, in reference to the "retina" and pathy, loosely translated as "suffering." This condition is a disease of the small blood vessels in the retina -- nerve elements in the back portion of the eye that receive images from the outside world. Retinopathy occurs in individuals with prolonged, poorly controlled, diabetes.
With her new prescription, she sat down to her foot-propelled sewing machine in an attempt to create another one of her masterpieces. By this time, I had taken up permanent residency in North Carolina. I was a senior in nursing school. My focus was on demanding, clinical rotations and graduation. Besides a "touch of sugar," she had a "touch of arthritis," also. Her dexterity and fine motor skills -- muscle control required to make small, precise movements -- were uncoordinated. It was a challenge for her to thread a needle. I had constant guilt-pangs because I couldn't assist her with her projects. I suppose she thought I had no interest in what she was doing and how she was doing it, but I made several mental notes. Today, quilting is my favorite pastime. I haven't tackled the hat projects, but I have all her millinery notes when I decide to.
Spirituality
On Sunday, we praised God. "Remember the Sabbath day, to keep it holy,"
Daisy insisted. And we did. It was one of the few things she was adamant about.
I was not allowed to cook, sew, watch TV or listen to the radio on Sunday. These
activities were considered "work." Dancing was a "sin,"
any and everyday of the week. We fellowshipped at Oakey Grove Missionary Baptist
Church and ate dinner that had been prepared on Saturday. My grandfather told
stories -- some real, some imagined -- and we went to bed. I attribute my grandma's
positive outlook on life, her giving spirit and her longevity to her faith and
belief in a higher Power. She walked by faith, not by sight.
Epilogue
Only two of my grandmother's siblings, my great aunts, Naomi, 94, and Phyllis,
94, are still alive. Nine of her 13 children are deceased. Five of the 13 inherited
diabetes. Most of her grandchildren, great-grandchildren and great great-grandchildren
are pre-diabetic -- diagnosed with fasting blood glucose levels between 100-125
mg/dL -- or are already affected by the chronic, metabolic disease.
When I started nursing school, I began to identify points-in-time -- past and present -- when things went awry for my grandmother in her diabetes care and management. I harbored a lot of "If Only" thoughts. However she did the best she could, at the time, with the resources and information she had available to her. She lived a meaningful life with purpose.
Daisy Adaline Parker-Williams shared her January 17th birthday with statesman and scientist Benjamin Franklin; stage, film, and TV actor James Earl Jones; heavy weight boxing champions Muhammad Ali and Joe Frazier (diabetic); and her neighbor and childhood friend, Catherine Hill. Like these towering personalities, Granny had a firm grip on what it was she wished to accomplish, at any given time, and forged ahead in spite of any foreseen or unforeseen difficulties.
Grandmama would, periodically, preface and end her sentences with, "If it's God's will." On January 9, 1986, it was God's will that my friend, my mentor and confidant, who had lived through 15 presidencies, depart this earthly life. She was 81 years young.
My English teacher took a few points off, here and there, for punctuation
and sentence structure. "Very Good" was splashed across my paper in
bright, red ink. She hung my report up on our class bulletin board along with
my grandma's black and white photograph. She titled the board, "Walk with
the Giants." She placed, Daisy Adaline Parker- Williams (1905-1986) squarely,
between mathematician and scientist, Benjamin Banneker (1731-1806) and newspaper
editor and journalist, Ida B. Wells-Barnett (1862-1931).
Love you, grandma. Always.