Friday, February 5, 2021

ON LIFE LESSONS LEARNED RESTS THE MEANING OF SUCCESS - SEEK21 - AWAKEN FINALIST IN ESSAY CATEGORY

 

On the subject of success, although the meaning of success varies in our culture, I believe that success only rests on life lessons learned. What is this life lesson that I learned?  Read, and find out.

 While on the couch, while home sick with a cold, I caught As The World Turns on TV, a classic soap opera.  Three months ago, Paul, and Jennifer, Barbara’s children, were fawning over her. Barbara was going “blind,” and her children were afraid their mother would never see them again.  Barbara’s son, Will, a baby, was too young to know what was going on.

Today, while blowing my nose from the cold, I learned Barbara could now “clearly see” and that infant Will had “aged” 3 years in 3 short months!!  A miracle!!! Will was certainly an extraordinary child. What had he been eating? And Barbara now sees!

Clearly, in three short months of convoluted plot, I missed quite a few episodes!

My own episodic life has taken quite a few unexpected plot twists of my own. Our family like As The World Turns could be considered a soap opera of its own.

After my brother’s eight years of marriage, the family recently learned that my brother, and his wife’s child has a very rare genetic disease called, Mitochondrial Encephalomyopathy, which is passed down mainly through the mother’s dominant genes, with some of the father’s recessive genes playing a part.  My brother and sister-in-law raised money so their kids could see a specialist at the Cleveland’s Clinic Research hospital, where the doctor there could perform skin biopsies, and genetic testing.   The disease has caused mental retardation in seven-year-old Robert, and little eight-year-old Amy is a carrier. My brother, Allen’s, employer’s medical insurance is an 80/20 plan with a high deductible, and his major co-payments cause economic turbulence because of his high medical bills.  In addition, the mother, my sister-in-law, also has the disease leading to fatigue, stress, intense migraines, seizures, financial liabilities, and periodically just plain orneriness, making her at times difficult to get along with.

The Cleveland specialist didn’t cure Robert of his mental retardation, or Amy. She still carries the gene. The Cleveland Clinic’s treatment for mitochondrial diseases involved a cocktail of vitamin supplements, which is tailored for each individual.  The cocktail increases the effectiveness of the cells mitochondria designed for each individual’s DNA. Coenzyme Q-10 is the kingpin of this new cocktail of vitamins.

Mitochondrial diseases result from failure of the cells mitochondria, which are tiny packages of chemical enzymes that speed up the cells respiratory processes.  Mitochondria creates ATP, adenosine triphosphate, the fuel needed for cells to grow and divide.  When mitochondria fail, cell injury, and cell death occur, due to less energy being generated within the cell.  If this process is repeated on a large scale, whole body systems begin to fail, and the life of the person, is compromised, changed, or even ended.1

In Robert’s case, brain cells are dying causing epileptic seizures, and mental retardation. Current treatment consists of treating the symptoms, which in Robert’s cause is epileptic anti-seizure medicine, and medicine to modify behavior.  Behavioral therapy provided free by the State of Arizona is also utilized.  My sister-in-law’s, Patricia’s, symptoms have manifested themselves in fatigue, migraines, heart issues, Pancreatitis, and Diabetes. Even though Patricia has fully functioning intelligence, her brain cells are also dying off with every epileptic seizure.  Amy also with fully functioning intelligence act as a carrier and tires easily.  All three Robert, Amy, and Patricia are susceptible to infections.

In the 1966 novel, and subsequent film based on Flowers for Algernon, a scientist concocts a surgery to cure metabolically induced mental retardation, and chooses Mr. Charlie Gordon, as his guinea pig. The surgery turns Charlie into an articulate, mature adult genius, who falls in love with Miss Alice Kinnian, his teacher at the Beekham Center for Retarded Adults, but like Icarus who flies to close to the sun, Charlie burns out from the metabolic side effects of the surgery. Eventually, he reverts to his former dull, childlike self, forgetting his lost love, and his flowering new self.1, 2

Flowers for Algernon published in 1966, preceded today’s anti-aging mitochondrial research by decades. In 1996, nobody even realized that there was anything like metabolically induced mental retardation.  Flowers for Algernon, pure fiction at the time, was also so prophetic. In the 1968 film Charley, based on the Science Fiction novel, Flowers for Algernon, the magical neurosurgery, which metaphorically occurred in the spring, symbolizing new birth, sped up Charlie’s brain metabolism with uncanny similarities to the way the vitamin, Coenzyme Q-10, speeds up the brain’s cellular respiration today.

It will take up to 2 months to obtain the final test results from the Cleveland Clinic’s Valentine Day appointments.  In the spring, the children will benefit, not with a cure, but will await the knowledge for a better quality, and perhaps, quantity of life. Patricia was given a prognosis of life until age 50, and Robert’s prognosis was not to live into adulthood.  Amy’s projection was also 50 years of age.

In the meantime while awaiting the results, doctors will treat the symptoms, the children will be given vitamins, and the public school system will offer Special Education for Robert.

In the novel, success isn’t ultimately measured with a magical cure for mental retardation.  Algernon, the mouse, as in Flowers for Algernon, who had the same surgery as Charlie, ultimately dies, making the procedure useless with a poignant ending. As readers, we know Charlie will eventually have the same fate.  In the movie version Charley, mental retardation is cured with extraordinary intelligence and no dead mouse, but my version of success isn’t measured in such terms.  So you can see the movie’s values doesn’t necessarily mirror the book’s values upon which the story was based.

My nephew Robert is a sweet, affectionate, loving, young boy, still a three-years-old, although he is actually seven.  He is however; given to violent, and destructive behavior, and wandering off, and he has to be watched constantly. Robert’s life has much value.  In relationship to myself, he has taught me compassion, how to love unconditionally, and through providing free babysitting services, I can learn to practice charity.  

Ultimately, as in the case of Robert, and Patricia, success is measured in life lessons learned.  Mentally retarded children, and adults have value just the way they are, without the rest of us trying to make it better. Even a lowly, white, lab mouse, named Algernon, deserved flowers for his grave, hence the title of the book, Flowers for Algernon.  Charlie, a gentle man, because of the experiment on his altered brain grew to be arrogant, volatile, and pushy.  His personality and soul evolved for the worse, alongside his growing superior intelligence, which soon surpassed the rest of the human population, including the researchers, and his own doctors. 2, 3

Inheriting mitochondrial related mental retardation, is like practicing Russian roulette.  The father’s recessive nuclear mitochondrial genes combines with the mother’s dominate mitochondrial DNA during conception. Scientists aren’t sure of the intricacies of the relationship between the two, although it appears, mitochondria is generally passed on through the mother.    Sweet Amy, her genes have a less virulent form of the disease, but who knows how her life will turn out. At the very least, like her mother, she will also become a major carrier.  A whole new plot twist.

Sometimes, I wish the plot had changed.  That life was like a book, or a movie where you could rewrite the outcome.  I wish sometimes that my brother had met and married someone else with fewer problems, a sweeter disposition, and stronger genes.

But then I wouldn’t have a whole new family to love. My life lesson learned.*

 

*Update: I first wrote this piece over a decade ago.  Things have changed. Patricia passed last year from heart issues at age 44, and both children thanks to excellent medical care have lived well into young adulthood. My brother has not remarried, and is still dealing with the financial implications. The Affordable Care Act of 2010 has modified the 80/20 insurance plans. Strides are continuing to be made in understanding all mitochondrial diseases, and the symptoms from these myriad of these diseases are better controlled as we moving closer towards a cure. Mental retardation is now called intellectual disability. And finally As The World Turns soap opera which aired for 54 years as of 2010 is off the air.

 

Note: You can view LS Wagen’s additional work on Amazon.com, under the category Books while searching under the term LS Wagen.

 

Endnotes:

1   www,umdf.org, United Mitochondrial Disease Foundation, 8085 Saltsburg Road, Suite 201,

    Pittsburg, PA 15239, 2005.

 

2    Daniel Keyes, Flowers for Algernon, Bantam Books, 1540 Broadway, New York, New York

    10036, 1966.  

 

3   Cliff Notes on Keyes’ Flowers for Algernon, Cliff Notes, Inc. Lincoln Nebraska, 1999.