North Star May '99

 

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Curtis Vance and his friends join in the search for the power to live, The North Star Monthly, May 1999.  by Heidi Erdmann (Vance)

 

    Curtis Vance and I met at a bonfire party in Walden one summer night in 1990. He was 17. I was 15.  Tall, dark, handsome, and the driver of a red Chevy Blazer, he was my dream come true.
    We shared many secrets that summer. I learned to drive his Blazer on back roads, although I only had my permit. We drank beer at parties, pretending we were old enough.  Soon we spent time talking. Alone. One night we bought blueberry yogurt, Keebler chocolate cookies, and milk at the Grand Union in St. Johnsbury, drove to Harvey's Lake, parked ourselves on a deserted dock, ate the blueberry yogurt with our fingers and dipped the cookies into the milk.  The lake was still, the air chilly. We listened to the silence, and smiled at one another.
    "What would you do if you could do anything?" I asked.
    "I would fly. High, higher. I would fly above you all."
    "How will you fly? In a plane? With wings?"
    He answered, "I will be a fly. A fly that sees and hears everything and a fly that everyone notices."
    That summer passed quickly, and soon it was September. We kissed good-bye, promising to stay in touch. As my parents drove me away from Joe's Pond toward Connecticut, I leaned over the back seat for one more look. All I could see were the deep reds, blazing oranges, and yellows of our maple tree, "whose leaves will soon be green," Curtis had said, "and we can be together again."
    He was gone.
    The leaves were green when I returned. And the next summer. And the next. For five consecutive summers I returned to Joe's Pond to see Curtis. The beauty of the mountains overwhelmed me as I drove up I-91, towards home. The mountains of Vermont seemed to call, but I couldn't understand their meaning. But, I understood Curtis and knew that someday the mountains would reveal their secret.
    In September of 1998, Curtis complained of sore legs as if he had run a marathon. A few weeks later, his right biceps ached.  Overtired? Poor nutrition? Too much bike riding? All were possible, but none seemed right.
    One night, near the end of September, we lay in the darkness in our apartment in New Haven, VT. Tired of not knowing what was wrong, I groped, "Curtis, your grandmother died young, right? Your Mom's mom? What did she die of?"
    Silence.  And, then, his response, "I don't know."
    Curtis traveled to Dartmouth hospital on the first of October.  He was having trouble walking. He was abnormally fatigued. He was worried.
    Dartmouth took blood, lots of blood, and we returned on the fifth. They wanted a muscle biopsy. That was the easiest way to detect trichinosis. Trichinosis?  Curt had been to a pig roast in August. Maybe the pork was undercooked? He returned to New Hampshire two days later. While we waited for the test results, our nights were spent thinking of the worms that were living in Curt's body. If only we were that lucky.
    A phone call a few days later revealed that it wasn't trichinosis.  "We would like you to see a neurologist on the fourteenth," they requested.
    A neurologist?  "What is wrong with me? How can I get better?" Curtis wanted answers.
    Our appointments with the neurologist seemed useless. They tested and re-tested, but nothing could be concluded.
    They asked for clues, "Any family history of neurological problems?"
    Curt thought a moment, and then said, "My Mom was diagnosed with MS about 25 years ago, but she's fine."
    "Any other history?" the doctor asked.
    No.
    The end of October closed in, and the doctors had no diagnosis. Curt's symptoms worsened.  Sometimes his feet got caught, and he would tumble as if he had no strength to hold his body upright. He had trouble rising from a chair. He was discouraged and confused but secure that he would overcome the problem.
    In November, we learned that Curt's grandmother, Clara McGill Langmaid, died of Progressive Bulbar Palsy at the age of 40. And her sister, Williamina McGill Penniman died of Progressive Muscular Atrophy. She was 49. Both were motor neuron diseases - synonyms for ALS: Amyotrophic Lateral Sclerosis: Lou Gehrig's Disease.
    "So what does this have to do with me?" Curtis asked.
    We took the sparse information about Curt's grandmother and great aunt to Dartmouth.  The doctors concluded that Curtis was suffering from muscle weakness, but they didn't point to a cause.  They suggested a specialist in Burlington. The earliest possible appointment was the end of December. Curt's grandmother and great aunt died within ten months of their initial symptoms. I did some research on the Internet, and Curt's family talked to other family members.  Curt's mom Linda, and I, both found a doctor's name at Massachusetts General Hospital.  He specialized in familial ALS. According to Curt's family, I was to mention the name Farr. I called. I described Curt's predicament. I dropped the name Farr. They wanted to see Curtis as soon as possible.
    On November 24th we traveled to Boston. The research coordinator explained to Linda that she had some information for her about her family.  Curtis and I met with a neurologist in an examining room. More questions. More tests.  After a few hours, the doctor impressed upon us that Curtis had a "marked rapidly progressive lower motor neuron syndrome."
    So, what does this mean?
    We returned to the waiting room and greeted Linda, who was gripping a stack of papers.
    Papers. They were only papers. But, they revealed a secret. Curtis's maternal great-great-great-great grandfather, Samuel Farr, also suffered from ALS. He was born in 1804. He died in 1865. He was ill for two years.  His brother, Erastus Farr, died at age 40 of ALS.  Their sister, Hannah Streeter, died at age 54 of ALS.
    Out of Samuel Farr's eight children, four of them died of ALS. His daughter, Ellen, was only 27. His three sons, one of whom was Curt's great-great-great grandfather, Wesley Orr Farr, all died in their forties.
    Mass General has done extensive research on Curtis' ancestors, for approximately fifty percent of every generation has suffered from FALS (familial ALS) since the 1800's.
    According to ALS-ON-LINE in February, 1998, "approximately 5-10 % of the people diagnosed with ALS have a genetic form also known as familial ALS (FALS). ALS is genetic if two or more patients in the same bloodline have ALS. Approximately 20% of those with FALS have an identified genetic mutation. The gene or genes responsible for the remaining 80% of FALS are being pursued."
    With this knowledge, our doctor in Boston was obligated to pursue a diagnosis of familial amyotrophic lateral sclerosis as well as other inheritable motor neuron diseases. While we waited for the official diagnosis, we discovered another secret. Curtis's maternal great-grandmother and Wesley Farr's granddaughter, Tennie Mae Gaskill, had researched the disease that had harmed her ancestors. She had written pages of information. But, when her daughter, Clara McGill, Curt's grandmother, was inflicted with the disease in 1962, Tennie's distress prompted her to throw the facts into the fire. The history of the disease was a secret to the succeeding generations.
    On December 15, 1998, Curtis and I entered our doctor's office in Boston.  I had prepared for the worse. Curtis had not said much about anything in weeks. Our doctor said that all tests were negative.  But, he said, "With that in mind, we have concluded that you have ALS."  He explained that given the family history, they believed it was hereditary.
    Later, when we were alone, tears crept into my eyes. Slowly, at first. They they flooded my senses. I could not see, nor hear anything but the letters, ALS, ALS, ALS. Curtis asked me to stop.  "Everything is going to be OK," he said. "There is no sense in crying. I'm going to beat this."
    Now it is the middle of April 1999. Curtis' legs are extremely weak. His right biceps is virtually useless. His left arm still functions.  He can no longer walk, or stand on his legs. His breathing is labored. I dress him, but he has learned to use his left arm and hand to feed himself and brush his teeth and hair. He has lost much of his privacy, but not his hope.
    We face a disease that has afflicted his ancestors for 200 years. We are aware of the fact that ALS is, at this time, incurable. Curtis is taking part in experimental treatment in Boston. It is anticipated that the medicine may slow the progression of the disease and restore the motor neurons that are dying. He is on three medications that have proven to slow down the progression of the disease in mice. He religiously takes herbs and vitamins to keep his body free from toxins. He is seeing a network chiropractor, who is working on keeping his energy pathways open and clear and a physical therapist, who works his remaining muscles as hard as possible.  A masseuse helps his body stay comfortable and limber, although its tendency is to stiffen and not do as it is told. The disease is progressing. Quickly.
    We are indebted to everyone who has helped us along the path of treatments and expanding our minds. They have helped us to learn that the answer lies within Curtis and within me.
    We are aware that we were created with free will, and we have the power to change. We also know that we are surrounded by a wonderful, kind, and generous community, and we believe that you may be a very important part of the answer. First, we would like to thank you all for your tremendous financial support, which takes a great burden off our shoulders for the time being, for the numerous phone calls and countless letters that have filled us with love and encouragement and for the generosity of all who have brought food, hugs, kisses and energy into our home. But, now, we take this opportunity to ask you for something more.
    Curtis and I wrote this article to let you all know the secret. There is a genetic mutation in his family that has caused turmoil and confusion for 200 years. Scientists understand that it degenerates the human body, but they do not know what triggered it or how to stop it. We have an idea.
    We are working with Wayne London, a doctor from Brattleboro, and his friend, Cindy Spring, a masseuse and energy worker. Together, we have brainstormed the possibility that community energy could heal Curtis.
    We ask you to recall the Duke/UConn NCAA championship game. Did you feel the energy?  Did you see how it affected the players on the court? As a competitive tennis player, I know a crowd's energy fills me with life and with the belief that I can accomplish my goals. Positive energy sparks a human being, fills them with love, and can help to achieve improbable feats. We have witnessed this in athletics, music, dance, and in other arenas for years. We believe that this same energy can heal. So, we ask that each and every one of you send positive energy to Curtis at anytime throughout any day. You can envision sending it in his right biceps, his legs, his diaphragm, or his entire body. And, you can envision Curtis moving as he did before the disease. Picture the energy flowing through his body as it works as a whole. We are going to hold group healing sessions at our residence in Danville, during which we will practice funneling the energy of an entire group into Curt's body.
    Curtis is now the fly that he dreamed he would be. Everyone notices him. He yearns to feel, see and hear everyone and their positive energy. Soon the maple leaves will be green. Curtis and I look forward to being here in Danville and at Joe's Pond this summer, together. The mountains that surround this wonderful community have always known that the power to change and to make a difference lies within each and every person. We invite you all to exercise this knowledge, now that the secret has been discovered.

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