North Star Aug. '99


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Learning to live while preparing to die, The North Star Monthly, August, 1999.  by Heidi Erdmann (Vance).


    According to Webster's New World Dictionary, a miracle is "an event or action that apparently contradicts known scientific laws," and "a remarkable thing."
    Roy and Linda Vance received an eleven pound two ounce miracle on August 18, 1973. After loosing their third son, Charles, to sudden infant death syndrome (SIDS) they prayed for a healthy child. And they were given Curtis Roger Vance.
    I received a miracle on October 14, 1995. A junior in college, I was a serious student, and competitive athlete, but I prayed for something more, something unknown. That something more asked me to a wedding, and after having known one another for five and a half years, Curtis and I decided to embark on a healthy relationship.
    In August, 1998, Curtis experienced a miracle. His body stopped using his father's healthy SOD-1 gene, and began using his mother's mutant SOD-1 gene, both of which have existed in his chemical makeup since he was conceived.  Then the symptoms of ALS (Lou Gehrig's disease) began. He started losing muscle and strength and confidence. Curtis and I felt confused and sad and helpless.
    In April, 1999, Curtis and I experienced a miracle. Diana, and Jon and Amanda Webster suggested that we hold healing circles in our home. The hour sessions on Thursday nights began. They were a time for sharing memories of the past, of Curtis and me as healthy, happy, and fine. They were a time for grief, an opportunity for family members and friends to grieve over the loss of Curtis' healthy body. They were a time for laughter, and pure joy, as Curtis began to realize that he is alive, and although not physically healthy, his mind and soul were thriving.
    In June, 1999, Carol Borland helped Curtis and me to learn of yet another miracle, the miracle of death. Curtis and I now realize that death is a miracle, for in the process of preparing for death, we can learn to live. We know that the only certainty in life is that we will die. With that knowledge, we are learning to live every second of every minute of every hour of every day!
    Yesterday morning Curtis thought that he might die.  He has a machine that helps him to breathe more comfortably, and at night he wears a full face mask.  It is sometimes difficult for us to communicate. Yesterday I was in the middle of a dream, and in my dream we were in bed and Curtis was asking me to move his right hand down towards his feet. I pulled and pulled on his arm, trying to bring it lower, to make him more comfortable. He kept saying down, down, down, and then the request turned into a demand. His voice became irritable, and hoarse, and then I woke up. Curtis was upright in his hospital bed, his left hand was fumbling with his face mask and his pupils were large.
    "Down. Down. Down."
    I grabbed the mask and pulled it down, tight against his mouth and nose. He turned on me in anger. I turned my back to him for the first time since his illness began. The rest of the morning was horrible.  I felt suffocated by the tension. After a few hours of silence, I decided to go for a run. On my way out the door, I stopped.
    The only certainty in life is death.
    I turned toward the house, and stood by Curtis. Through conversation, Curtis and I realized that I was asleep during most of the trauma and that he allowed the confusion and helplessness to dictate his emotions.
    During my run, a large truck came too close to me. I dodged the powerful noise. The only certainty in life is death. I thanked God that I had kissed Curtis goodbye.
    Curtis and I join Carol Borland in a green ribbon campaign. We ask that those who support Curt and me in the idea of learning to live while preparing to die wear a green ribbon or adorn their car or house or other things with green ribbon. Curtis is faced with a terminal illness, and thus he, a twenty-five year old man, is aware that he may die.  We all know that we will die. Curtis is no different than any of us. Death is remarkable, it is a miracle.
    Life is remarkable, it is a miracle. Curtis has learned to live. And those who attend our healing circles have told us that they are now more aware of how to live. We invite everyone to our healing circles at our home on Thursdays at 6:30 p.m. We also invite everyone to a healing circle on Danville Fair Day, at 1 p.m., at the Danville Methodist Church. And we invite everyone to wear green ribbons.
    Curtis is a remarkable man. According to his parents, to me and to many people in our community he is a miracle. We are working on one more miracle. We are working on helping Curtis to switch back to his father's healthy SOD-1 gene. It would be remarkable if we could accomplish this goal, and the possibility helps Curtis and me to feel strong and confident once again.

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