Sitting on the cushy-warm leather sofa just outside of Dr. S’s office, concentrating intently on bending and moving the wire-core rubbery figure’s arms and legs, an anemic-looking, three-year-old body aches with the arthritis-like symptoms her grandparents reported experiencing. The three shared evenings in front of the soothing heat radiating from the antique round oak wood stove in the living room of a creaky old house built over 60 years previous.

Unsuccessful in her focused attempt, she takes a deep breath, the first of her petite aching body since the doctor’s thorough examination earlier in the day. Becoming aware of the doctor speaking in a solemn, monotonous but deep voice, she noticed the big heavy wooden door to his office was slightly ajar as she sat in the doctor’s waiting room.

At first, not really hearing distinct words, only that flattened, low voice, and with the simplistic mind of a child, she began to feel impatient to leave. Daydreaming, trying to imagine what the special treat she had been promised, believing she was the good girl everyone had asked of her to have endured the extensive and painful diagnostic testing the doctor had done earlier in the day. Would it be her favorite ice cream? Perhaps the plastic handgun and holster she had wanted to be like Annie Oakley? Would it be a new toy, maybe a shiny-faced dolly smiling from the crinkly cellophane of a colorful cardboard box?

Slowly she realized she was hearing words, distinct words, words no one wants to hear, whatever their age! Even though not exactly comprehending some of the doctor’s words, she pieced together the sad picture the doctor was trying to convey to the young, unsophisticated parents. The Orthopaedic specialist was attempting to educate them about the RARE and terminal bone disease the morning tests had revealed. She knew what RARE meant. She heard the Dr. trying to explain to her parents that his expectations for her recovery were worse than grim.

Many years later, she remembered thinking to herself, nooo! I will not let that happen! I have to be very convincing when I announce to them ALL that I am stronger than anyone realizes, can win over this pain, and will be a normal girl! They will all see, I will show them!

The crying face of her frightened young mother first emerges from the partially open dark wooden door, followed by her white-faced father with his head hung, following stiffly behind the mother. Dr. S slowly followed her father until they surrounded her tiny body settled into the mammoth-sized leather sofa.

Out of the child’s mouth before anyone could speak as simply and as convincingly as she could muster, from her rosy lips came the words, “I am NOT going to die!!!” She remembers feeling the entire universe go into slow motion and then stood completely still. Holding her breath, she waited for someone’s confident reassurance that never came.

Mother walked away into the dark hallway, followed by father. Dr. S handed the uncomfortable, lost girl the “Mr. Bendy” toy, promising that she could take it home and keep it for being such a good girl for his exams. She promised him she would practice exercises until returning to show how painless were her movements, equally as freely as Mr. Bendy. The Dr. was speechless and hugged the girl tightly to his chest, glancing helplessly toward the outer door of the waiting room where her parents stood. It was a very long and quiet ride home that day.

Dr. S recommended visits to Dr. George, a chiropractor in Gardiner. Weekly uncomfortable, sweaty Ultra-Violet Ray treatments and manipulation were the best he could offer. Aside from the not-so-positive prediction, doctors were convinced she would be unlikely to survive beyond the age of ten, having no further information on the rare disease.

Accompanied by medical records, Dr. S did attend a worldwide medical conference in Japan where he learned only two other known instances of Calcinosis Universalis did not survive beyond their teens. There seemed to be no documented cause or follow-up for the odd condition which developed seemingly overnight, accompanied by a high fevered outbreak of this disease. All the girl knew was that it was excruciating to move and that she wanted to cry, sleep and vomit most of the time, making both parents angry. The Dr. ordered a few series of X-rays to document the overabundance of calcium in the girl’s body for his records.

Daily olive oil massages on grossly swollen and knobby knuckled hands, trying to sit on the floor with painfully stiff skinny legs crossed. Exercises consisted of balling newspaper pages into as tight & small a ball as possible or bending her index finger toward the base of her palms. Impossible mission! Painful memories of squeezing the newspaper with tears spilling from her eyes, trying to be silent so she wouldn’t upset anyone or be yelled at continue to permeate her adult dreams.

Western medicine has not provided anything for relief, but diagnostic tests have depleted the health account she shares with her husband, leaving them with only questions and bottles of ineffective Rx medications. Today, at age 70, she manages the excruciating pain of her recurring “terminal” disease by dry-vaping medical marijuana flower. She enjoys gardening, riding her Kubota tractor, kayaking, and hiking the Perkins Highway on sunny days.

National health care consultants and Osteopaths agree that the medicinal qualities of THC are most likely helping her body push back the debilitating effects of the painful childhood disease, Calcinosis Universalis. For as long as she is again able to enjoy the outdoor activities she loves and can perform yard maintenance or drive to fill her pickup truck with compost, she is satisfied that her self-care allows her to find peaceful moments.

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