SPINAL CORD INJURY:
Jorge Alfaro's Story
At the beach, Jorge Alfaro is at complete peace.
During late summer afternoons, you can find the 39-year-old Chicagoan and self-proclaimed “beach bum” at North Avenue Beach on the shores of Lake Michigan, with pet boxer, J.B. (for Jack Bauer of “24” fame), at his wheelchair’s side. “I love the tranquility and the open space,” said Alfaro. “I think about all I’ve been through and how lucky I am to be where I am today.”
On a July evening when Alfaro was a young boy, he found himself in the wrong place at the wrong time while standing on a street corner with friends on Chicago’s west side when he was shot in the back, causing a spinal cord injury.
“When I woke up in the hospital, I couldn’t feel anything,” he recalled. His first instinct was to try to sit up but he couldn’t. Alfaro was paralyzed from the waist down.
Two weeks later, he entered the Rehabilitation Institute of Chicago (RIC) for inpatient rehabilitation to learn how to regain function and independence after his injury. Physical therapy helped Alfaro build his upper body strength, allowing him to push and maneuver his wheelchair. Through occupational therapy, he learned how to perform everyday activities, such as dressing and bathing as well as other activities such as cooking and maneuvering around furniture in RIC’s Activities of Daily Living Apartment. This unique space gives patients the opportunity to practice these important daily functions in a home environment.
Alfaro first felt frightened and uncomfortable in this unfamiliar environment. “There were not a lot of people out there with spinal cord injuries and I wanted to talk to someone who was in my same shoes,” he said. He was immediately befriended by Bob, a former patient of RIC and a member of the adaptive sports program.
Bob, who also used a wheelchair, became a mentor to Alfaro and eased the anxiety that was brought on after Alfaro’s injury. Over the next few weeks, Bob introduced him to other teenagers who had experienced spinal cord injuries. “I felt as though I had finally found people who I could look at and say, ‘You are me,’" Alfaro said. “It helped me to feel normal and showed me I was going to be okay.”
After receiving inpatient care for about a month, Alfaro learned how to adjust to life in a wheelchair and acquired skills used to manage basic day–to-day activities, such as getting in and out of a car, dressing and moving from a bed to a chair.
Alfaro reflects on one of the most memorable parts of his rehabilitation experience, which took place outside RIC’s walls. After three weeks of occupational therapy, Alfaro’s care team took him and fellow spinal cord injury patients to Michigan Avenue to put the skills they had learned to practical use.
The busy street was crammed with summertime shoppers and Alfaro worried about standing out in the crowd. RIC’s therapists reassured him that he was just getting his bearings with his new wheelchair, and he was just as capable of living his life as every other person on the street. Before long, he was confidently guiding his wheelchair through the crowds. “The therapists made me feel comfortable and secure,” he said. “They allowed me to exercise my independence and experience what it’s like to be in downtown Chicago in a wheelchair.”
A Lifetime of Care
Alfaro continued his treatment at RIC as an outpatient for many years. Later, he reassessed his goals and began working with therapists on new methods of mobility.
Alfaro also received help from the Sexual Dysfunction Clinic for Men with Spinal Cord Injury. Like many men with spinal cord injuries, Alfaro experienced erectile dysfunction and found it difficult to be intimate with women. Facing these issues as a young man, he had lost all hope of one day getting married and having a family of his own.
In 1999, Alfaro was seriously dating someone and met nurse practitioner, Diane Rowles, MS, NP at RIC’s clinic. Rowles worked with him on communicating with sexual partners about his disability. Rowles encouraged him to discuss his injury with potential partners in a lighthearted manner, as to help ease his anxiety and frustration. She also educated him about sexual enhancement pills, such as Viagra®.
One of the most valuable lessons Rowles taught Alfaro was that people were going to respond to him based on the way he presented himself. “If you roll into a room with your eyes down and avoid people,” she told him, “that is exactly how people are going to respond to you. But if you roll into a room with your head up and a smile on your face and reach out to shake somebody’s hand then they are going to be open and drawn to you like anyone else.”
“She made me feel confident and sexy for the first time in my life,” he says. “My whole level of self confidence went up because of her.”
It is no coincidence, Alfaro said, that six months after being introduced to Rowles, he and his girlfriend married and conceived a son.
“When I met Jorge, I saw a person who wasn’t sure at all what his life in the future was going to be,” Rowles said. “Since then, I have seen him take his life into his hands and make it exactly what he wants it to be.”
Alfaro got involved in RIC’s sports programs immediately after his injury and has made sports an active part of his life ever since. He has played wheelchair softball for the RIC Cubs, is a member of RIC’s wheelchair basketball team and has participated in track and field. Alfaro remains active in these sports teams today and finds it to be a great social outlet.
Nearly 25 years after his injury, Alfaro, a salesman for a medical supply company, is still a regular presence at RIC. Twice a week he volunteers as a peer mentor and talks to recently injured patients with spinal cord injuries about what they can expect and how best to adjust to their new lives. “What I can offer them is real life experience,” he says.
Alfaro’s experience was largely shaped by those he came in contact with during his time at RIC. “They helped me gain my independence,” Alfaro said. “They assured and comforted me that everything was going to be OK. They introduced me to my new life and it is a life that I really love.”