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My Story
By Elizabeth Gearhart …a dear friend
I met Victor Alvarez on October
21, 1996—his tenth birthday—and the day I rejoined the Comfort House staff
after three years away at graduate school. Comfort House is a small
hospice-type facility in McAllen, Texas—a place where people with
life-limiting illness live out their final days. It had been four months
since Victor had arrived by ambulance from a Galveston hospital and a year
spent in an intensive care unit. When he left the hospital, his doctors had
said he had only a few weeks to live.
As I walked in, Comfort House
staff and volunteers were getting ready to throw Victor a birthday party
outside on the large wooden deck. He sat in his wheelchair dressed in black
pants and a white dress shirt, viewing his surroundings through wide dark
eyes. Even with clothes on, I was very much aware that Victor’s body, and
particularly his arms and legs, looked like the stick figures children draw.
Victor has spinal muscular
atrophy—or SMA— a type of muscular dystrophy that prevents the growth of
muscle tissue. Even today, at age 20, he weighs only 60 pounds. He cannot
walk or sit up or lift his head without help. He can use his left hand just
a bit, but his right hand hangs limp. He needs help eating, dressing, even
shooing away mosquitoes trying to land on his nose.
The birthday party was a festive
affair with blue and white streamers, balloons, and a piñata stuffed with
candies. The piñata was customary since Comfort House and McAllen are in
deep South Texas just across the Rio Grande from Mexico.
In the following weeks I would
get to know this bright-eyed boy, this kid without a body that worked. I
would learn that Victor was a young man who overcame enormous obstacles with
courage and good humor. And, I would be drawn into his ever-widening circle
of friends.
Victor was born in 1986 in San
Luis Potosi, Mexico. One day, when he was18 months old, he stood up on a
bed, stumbled, and fell to the floor. He never tried to walk again. His
mother thought he had injured himself. His father thought he was lazy. After
the fall, he spent most of the time being carted around on his mother’s hip
as his muscles grew weaker. At one point, his grandfather tried to
straighten his frail crooked body by tying him to a board.
Not able to cope with having a
child he considered less than perfect, Victor’s father walked out on the
family. As he left, he turned to Victor with this parting shot: Nunca vas
a servir par a nada. “You’ll never amount to anything.”
When Victor started school, he
was placed in a classroom for children with severe mental disabilities.
Educationally, it was not a suitable placement, but Victor learned to love
his classmates whom he described as “very spiritual, very close to God.”
Then, in the summer of 1995, he got bronchitis and chicken pox at the same
time. His body “shut down,” and he was helicoptered from Brownsville Medical
Center to the University of Texas Medical Branch in Galveston. He remembers
that, during the trip, he “died” twice, and his heart was shocked back to
life.
Victor describes his year in the
UTMB intensive care unit as “the lowest period of my life.” He credits the
window next to his bed with helping him survive the ordeal. Any time night
or day when he opened his eyes, he could see people walking and talking and
laughing in the street outside. The sight would renew his passion to
live.
He spent months intubated on a
ventilator and was only able to communicate with his expressive eyes and his
eyebrows. Even though he was fed through a gastric tube that went directly
into his stomach, he kept losing weight and the doctors were extremely
worried he was dying. The only other option was to remove the ventilator so
he could also eat by mouth and give him a tracheotomy so that fluids could
be suctioned from his lungs.
There was a 50/50 chance Victor
would die during the extubation procedure. Even if he survived, the
prognosis would be grim. It was Victor’s choice, and he mulled it over for
two weeks. One day, he received some cards from his Brownsville school class
along with a note from his teacher that read, “Never give up.”
The next day, the doctors
removed the vent and did a tracheotomy. They told his mother he probably
would only live a few more weeks but that he no longer needed
hospitalization and would have to leave. His mother’s life, however, had
changed during his lengthy hospitalization and she would not be able to care
for him.
Victor was transferred to
Comfort House to spend his final days, and the staff and volunteers took the
lonely frightened child into their hearts. The days stretched into weeks and
the weeks into months. Victor didn’t die. The doctors at UTMB had been
wrong. However, he was not out of the woods. He had severe scoliosis of the
spine that would only worsen when he hit the expected growth spurt at
puberty. His lungs would no longer be able to meet the needs of his growing
body and, at that time, he would die.
Then, shortly before his twelfth
birthday, I took Victor to the local Easter Seals clinic to see about
getting him a larger wheelchair. He was examined by Dr. Albert Sanders, a
kindly orthopedic surgeon from San Antonio. Dr. Sanders had pioneered a type
of back surgery that could prolong Victor’s life. I flew with him to San
Antonio for the surgery. A rod was placed on each side of Victor’s spine and
the two rods were laced together with wire. When we returned to McAllen he
was six inches taller, and his lungs had been spared.
Elizabeth Jamsa Gearhart
May 2007
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