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Turning Trials into Opportunities
By Julie Nichols
On August 19, 2000, my life would be forever changed but for the better. I just didn’t realize it at the time. My youngest child, Sam, was born into respiratory distress and placed in a neonatal ICU for 2 weeks. As I gazed at this beautiful child, I realized that my life would never be the same, but to what extent or how, I didn’t know.
Sam suffered with sickness the first two years and I noticed that his development was awkward, to say the least. On one hand, he could recognize his letters, colors, numbers, and shapes without much exposure, but yet, he had no interest in his family, affection, or other children. His behaviors were repetitive and rigid, and his eye contact was poor.
By the age of two and half, Sam was not using functional language even though he could repeat words. My husband, Grant, and I knew then that we needed a diagnosis. Soon after this discovery, our family attended a family reunion. A cousin with a daughter with autism saw Sam for a short time an evaluation for him right away. This just confirmed our concerns as parents.
After several visits to neurologists and pediatricians, we were referred to a brilliant developmental pediatrician who spent hours observing Sam and collecting developmental history notes. After this period, we received a diagnosis of autism for Sam. Immediately, many hours of therapy started: Applied Behavioral Analysis, Speech Therapy, and Occupational Therapy, 25-30 hours/week for three years. We had a lot to do because Sam couldn’t imitate or tell us his name at the age of three.
After Sam started the first grade, he still continued therapy and private tutoring but was able to function with social and academic challenges in a regular education classroom from then through the fifth grade. After this, the social pressures of middle school and the academic load became too great for Sam. We enrolled him in a school for children with learning disabilities. At nearly 13, Sam is now on a path to college and a full normal life. He recently shared his testimony in front of 1000 people at our church (without looking at them of course)!
Around the time of Sam’s baptism, my life changed radically once more. A few years before I had suffered from extreme fatigue, muscle cramps, sleep issues, and anxiety. A month before Sam’s baptism in November of 2012, I noticed a muscle twitch in my right thumb. It stopped as abruptly as it started. Then I felt as if I was developing arthritis, but all blood work came back normal for this condition.
When tremors developed in my right hand and I started losing my balance, I knew something was terribly wrong. The tremors became constant when I wasn’t doing activities that required movement with my right hand or head. Rheumatologists and neurologists couldn’t figure out what was wrong. I was screened for Multiple Sclerosis, had many other blood tests done, was misdiagnosed with Fibromyalgia and hospitalized twice. By early November I needed a walker or a cane to get around because of my fear of falling, severe pain, and extremely slow movements.
In January, I developed more unusual symptoms such as involuntary limb movements and freezing in one position as a stood up. I had been reading a a book on fibromyalgia because of my diagnosis and, as I opened the book, my eyes went directly to a story about a woman who was misdiagnosed with fibromyalgia but, because tremors are not a symptom of fibromyalgia, was finally diagnosed correctly with Parkinson’s. I then researched Parkinson’s and learned enough to suspect that was what I had.
I typed up a detailed list of symptoms and shared them with a friend in our Sunday school class that had Parkinson’s. He suspected Parkinson’s as well after he had me repeat the physical reflex tests that his neurologist conducted with him, I had them all the symptoms! After this, my rheumatologist referred me to a neurologist in Houston. I gave him the list of symptoms, and, after four physical exams, he also suspected Young Onset Parkinson’s disease.
A trial of L-Dopa was suggested to confirm the diagnosis. Other conditions responsive to L-Dopa were ruled out. The night before I tried the first dose in January, I couldn’t walk down the street to our community mailbox without a walker. After the first two doses, I could walk without assistance at a normal speed and all shaking stopped for the first time in over three months. I knew without a doubt that I had Parkinson’s disease at that point. A few days later, two neurologists confirmed that I had Parkinson’s.
I am now almost back to my old self because of the medications, but I know that medication is only half the battle. Exercise, diet, therapy, and support group attendance will be key to my quality of life in upcoming years.
Parkinson’s has turned out to be just the beginning of a new road in life that I can use to help others in the future. I am continuing to focus on my work as a dyslexia specialist and on raising my family.
I believe that the trials in our lives are intended to be used for good. I’ve witnessed this truth time and time again in our journey with Sam. And, life doesn’t stop with the diagnosis of an incurable disease. Every trial is an opportunity to do good and to improve the quality of life for others. Most importantly, I have learned that every day is a gift to be cherished.
Jane Thomas: Businesswoman and Community Leader
By Annette Jennings
Jane Thomas is a mother, a civic leader, and the owner of Apple Specialty Advertising. She also happens to use a wheelchair as the result of a spinal cord injury at the age of 16.
Understandably, as a young girl, Jane found it difficult to accept her paralysis and the prospect of never walking again. However, Jane's mother encouraged her to move forward with her life despite her need for a wheelchair. Her mother helped Jane realize that she did not have to give up on her dreams for the future.
Jane took her mother's advice to heart. In 1988, while in her early 20s, Jane moved from southern England to the United States with her own young family. In addition to her responsibilities at home, Jane attended school full-time at the University of Texas at San Antonio and worked full-time, eventually becoming the manager at a medical staffing firm.
In February 2000, Jane decided to start Apple, a one-stop promotional products company. As the company's owner, she wears many hats. These include salesperson, graphic designer, and office manager.
Three years later, just as her business was coming into its own, Jane received the bad news that she had very aggressive Stage III breast cancer. The remainder of the year was grueling. Although she underwent surgery, radiation, and chemotherapy, she missed only two days of work. At year's end, not only had Jane managed to keep Apple afloat, but she had also succeeded in growing her business by 10%.
In every aspect of her life, both personal and professional, Jane has not allowed herself to be defined by her disability. She is guided by a firm belief that it is necessary to “live each day with as much passion and joy as possible.” Jane's determination has led to her success, which, in turn, has convinced her of the need to share her message of understanding and acceptance with others.
Jane does this informally on a daily basis through her interactions with clients. Her customers know her first and foremost as a talented and capable businesswoman. In other settings, Jane makes formal presentations in which she helps professionals in business and healthcare understand that, at a very basic level, we are all the same. She reminds her audience that our similarities outweigh our differences, no matter the type of disability.
When speaking to nursing and medical students at the University of Texas Health Science Center, which Jane has done regularly for several years, she especially emphasizes the importance of focusing on the individual rather than the disease. Based on her experiences, Jane appreciates that respect for human dignity requires patients to be involved in making treatment decisions whenever possible. Indeed, the patient has a unique understanding of his or her existing disability and the potential for a new diagnosis to affect quality of life. According to Jane, “It is important to have a life of honor.” For her, this means the right to self-determination.
As a further expression of Jane's desire to be a positive force in the community, she has been involved with numerous civic organizations. Most notably, she has served as chairperson for the City of San Antonio Disability Access Advisory Committee and the South San Antonio Chamber of Commerce. She is also a member of the board of directors for Project MEND, an organization that provides medical equipment and assistive technology for low-income people in San Antonio. In honor of her accomplishments, Jane received the Texas Governor's Committee for People with Disabilities Entrepreneur Award.
Despite the things that happened in her life that were outside her control – a childhood injury and subsequent diagnosis of cancer – Jane has decided to live her life with great enthusiasm. In so doing, she has inspired countless people with disabilities to strive to achieve what may have once appeared to be unattainable goals – using public transportation, walking across the room, driving a car, holding a job. Though the goals will differ according to each person’s situation and desires, Jane is an example for anyone who faces the challenges presented by a disability. Moreover, she has been instrumental in breaking down barriers between people with and without disabilities by emphasizing the critical importance of respect for one another based on our shared humanity.
Jane can be contacted at www.applespecialty.com .
For information about Project MEND's services, as well as how to make a donation, please visit www.projectmend.org.
My Story: Life As a Recent Amputee
By Annette Jennings
(Photo: Annette and her daughter, Savvy)
On August 27, 2012, I had a right below-the-knee amputation. I did not arrive at this place in what some may think the usual ways. I didn't have an accident and don't have diabetes or cancer. Strangely, I woke up on a January morning in 2009 to find my right ankle red and swollen. Though no obvious injury came to mind, I thought perhaps I had twisted my ankle while walking the dog the previous evening. When my ankle didn't improve after a couple of days, I visited a nearby urgent care and then my primary care physician. Though I don't remember either doctor doing anything other than looking at my foot, I was given a diagnosis of gout. This didn't seem right to me, but was assured this was the most likely cause of my problem. I was told that it was okay for me to keep walking without a brace or crutches, so long as I could “tolerate the pain.” One month later, after two more trips to my family doctor, I was told that I should see a specialist.
Only two minutes into his examination, the foot doctor told me that I had torn the tendon that supports the arch of the foot. I immediately realized that this was a serious matter, but it was not until later that I came to understand how serious it was. Because I had walked on an injured foot for several weeks, this important tendon was shredded. Though the doctor tried to repair it, his efforts were not successful. By late spring, my foot collapsed and made walking difficult and painful.
From early 2009 to May 2011, I had six surgeries on my foot, three of which were major reconstructive surgeries. With each surgery, my situation seemed only to get worse. The pain became more severe with time, and my foot became terribly deformed. Nonetheless, I kept saying to myself, “This is the one. After this surgery, I will finally be able to walk.” By December 2011, I came to realize that my foot was not getting better. A new type of brace that I had been led to believe would relieve my pain and give me the necessary support to walk, proved to be a disappointment. It was at this point that I knew my options were limited. Either I could try one last reconstructive surgery, a grueling procedure that would have left me with significant impairment, or I could opt for an amputation.
As it turned out, this decision, which I had been struggling with for months, was made for me in July following a CT of my foot. Attempts to fuse several of the foot joints had failed, and advanced arthritis in my ankle had caused bone erosion and weakness. Odd though it may sound, I was actually relieved that the decision was in a sense made for me. I no longer feared second guessing myself.
Throughout these past 3 ½ years, many people have asked my secret. How have I remained hopeful after experiencing so many disappointments? How is it that I have continued with many of my pre-injury activities, even though they now require much more effort? How can I possibly joke about my situation?
The truth is that I have had many times when I felt hopeless, shed tears, and felt that doing a particular activity was just too hard. Thankfully, though, the support of family and friends has always brought me through these tough patches.
My chief source of inspiration is my daughter Savannah (“Savvy”). Savvy, whom I've written about before, has severe physical, intellectual, and developmental disabilities. She has heart disease, is legally blind, and has neurological and orthopedic problems. In just the past year, she has been hospitalized twice in the intensive care unit following seizures and a liver infection. Even so, she lives her life with great enthusiasm. Once the crisis passes, it is though it never happened. She can't wait to get back to her family at home and her buddies at school. Others might see her as “disabled,” but she views herself as just Savvy.
Though she doesn't have the ability to talk, Savvy has taught me through her actions that despite setbacks, life still holds many joys. Maybe I can't hike with my husband and kids, but I can still relax by a river while reading a good book. Walking my dog Mandy isn't possible, but playing catch with her in the backyard is a lot of fun. With the aid of a motorized cart, I can even go shopping at Target, my favorite store. From Savvy, I have learned to focus on what I can do, not what I can't.
She has also helped me to understand that just as she is Savvy, a 19-year-old girl, I am just Mom. She doesn't cut me any slack. When she wants my attention, she doesn't hesitate to shake my crutches. When Savvy is ready to leave, she hands the crutches to me, as if to say, “Let's go.” The only notice she has ever taken of my absent limb was when I first returned from the hospital. On that occasion, she pointed at the place where my leg had been and patted my stump. Having done that, Savvy seemed satisfied that I am just fine, and she hasn't given it a second thought since.
I have also been inspired by my fellow amputees. Before surgery, I was fortunate to meet Mona Patel, who, as a college student, was hit by a drunk driver. Following over 20 surgeries, she opted for an amputation at age 25. Mona, now 40, is extremely active. She has a family, a job, and even has competed in the Rock-and-Roll marathon. Seeing someone whose experience was very much like my own, doing many of the things that I had once been able to do, was incredibly exciting to me. Knowing what was possible gave me the strength to endure one more surgery.
Through Mona, I've become involved with an amputee support group that meets monthly at Warm Springs Rehab. Hospital. This group is very diverse. Members differ in length of time as an amputee, the reason for amputation, and age. Despite our differences, the bond that we share is incredibly strong. Long-time amputees offer encouragement to new amputees. We cheer members' successes and rally around them when they are faced with challenges. We also find humor in what to some might seem an unthinkable position in which to find oneself. Less than 2 weeks after surgery, I enjoyed a good laugh when another member, who had recently lost several pounds, told about his prosthetic leg falling off while walking through the hardware store. Though being an amputee is not funny, I've learned that it is okay and even therapeutic to laugh at such times. Humor has the ability to put people at ease, both the person with the disability, as well as non-disabled people.
As I continue along this journey, it is my hope that I can help others, as so many have helped me. It is because of these wonderful people that I have the strength and the determination to live my life to the fullest. So, to those who ask how I do it, I would have to say that I don't do it, not alone anyway. The inspiration, assistance, and support that I've received from family, friends, and fellow amputees have been a blessing to me. My secret then is to accept help, and then, when you are able, pass it along.
Becky's Hope: Making a Difference for People with Disabilities in Romania
By Annette Jennings
Lidia and Mircea Oprean came to the United States from Romania in July 1987 with their young son, Mike, and high hopes for a new life in a free country. Only 2 months after their arrival, however, the family experienced a major shock when Lidia gave birth to their second child. Their daughter, Becky, was born with severe spina bifida. The Oprean’s later learned that Becky’s disability was the result of Lidia's exposure to radiation during the Chernobyl disaster of 1986.
For two years, Lidia was angry at God. With time, though, she began to realize that Becky's birth was a part of “God's perfect plan.” Lidia believes that the period from birth until 1996, a time when Becky required many surgeries and much therapy, was paving the way for the work that was to be done.
Beginning in 1996, and continuing until 2005, Lidia and Becky volunteered with Joni and Friends, a ministry of Joni Eareckson Tada. In their work, they traveled each summer to Romania to distribute wheelchairs. The American team would typically provide 500 wheelchairs to people in three cities in a period of just 12 days.
While the other team members would return home, Lidia and Becky would stay in Romania for the rest of the summer. As they travelled throughout the country, they met with parents of children with disabilities. These parents expressed feelings of isolation and frustration in a society in which the disabled are unwanted and unloved.
As a result of their experiences meeting with family members of people with disabilities, Lidia and Becky felt led to establish Becky's Hope, a ministry dedicated to providing retreats for the parents and siblings of individuals with disabilities in Romania. For many of the parents who participate, these 5-day retreats offer them their first opportunity to take a break from the responsibilities of caring for their child. One couple who attended had not had a break from their role as caregivers for 32 years.
For parents who attend a retreat, there is much to be gained. They receive educational and Biblical training, support and rest. As these individuals have returned to their communities, many have established support groups and have helped to increase awareness about the experiences of special needs people and their families.
Siblings also benefit from the retreat experience. One girl, Mary, said, “This camp helped me to understand my sister with special needs. It helped me not to be angry anymore at my mom, to understand her and help her. It helped me to start getting along with my sister and not be ashamed to take her out in public or to church.”
Though Lidia and Becky spend their summers in Romania conducting retreats, they spend much of the remainder of the year speaking to members of Romanian communities in both the United States and Australia. These meetings not only provide an opportunity for Romanian immigrants to those countries to support the ministry to caregivers and siblings of the disabled in their homeland, but they also offer Becky an opportunity to share her message of hope and to challenge people to use their time wisely. As Lidia remarked, “To whom much is given, much is required. We have come to the United States, the greatest country in the world. God has said that it is our responsibility to go and make a difference.”
As a testament to the importance of Lidia's and Becky's work, they were awarded the President's Volunteer Service Award in 2008. Mother and daughter travelled to Washington, D.C., to receive the award. While there, they had the privilege of meeting with President George W. Bush in the Oval Office.
For more information about Becky's Hope, please visit www.beckyshope.org.
John Quarles: Making Lemonade Out of Lemons
By Annette Jennings
John Quarles, age 30 and an Assistant Professor of Computer Science at the University of Texas at San Antonio (UTSA), was diagnosed with multiple sclerosis (MS) at the age of 22. Shortly after arriving at UTSA in 2009, John had a major attack that severely limited his mobility. In an effort to regain lost skills, John received physical therapy. During these sessions, John began to think about how the therapy experience might be made better.
Having already worked with virtual reality (VR), a computer-generated environment that is experienced by a user as a real environment, it occurred to John that VR might have a role to play in rehabilitation. Although much research has been conducted on VR rehabilitation, no one has ever studied how people with problems affecting mobility like poor reflexes and balance respond to the fundamental aspects of VR, such as presence (i.e., the suspension of disbelief) and latency (the time between a user's interaction and a response)." Realizing that this information would be important to someday being able to develop VR therapies, John applied for and received grants from the National Institute of Health (NIH) and the National Science Foundation (NSF) to investigate how people with physical disabilities experience VR with applications to therapeutic video games.
Although John’s work is in its early stages, it is his ultimate goal “to use technology to help people function better in the real world.” Using himself as an example, John noted that he must see his surroundings to walk safely. Otherwise, he is likely to fall due to his poor balance. John predicts that within the next 10 years, it will be possible for portable electronic devices such as cell phones, implants, and special hats and glasses to receive and transmit sensory information. Such devices could provide clues to people to improve their ability to sense their surroundings, thereby making it possible for them to move about more easily.
John emphasizes the positive when talking about how MS has affected him. True, having MS has impacted his career by slowing him down, but it has also inspired his current work on VR. John’s wife Keira likes to say that John’s grants are “lemonade grants,” since John is using his research to make lemonade out of lemons (MS).
If you are interested in John’s research or would like to participate in one of his upcoming studies, go to: http://www.cs.utsa.edu/~jpq
Jennifer Niggemyer: Special Education Teacher
by Annette Jennings
As a young child, Jennifer Niggemyer knew what it meant to feel different. While still in elementary school, she began to have seizures. At first, Jennifer had several "absence" seizures a day, which caused her to briefly lose awareness of her surroundings. It was thought by some that she might have attention deficit hyperactivity disorder. It was only after she had two severe grand mal seizures, that Jennifer’s disorder was diagnosed.
Having a diagnosis gave Jennifer and her parents a better understanding of the situation, but it did little to make her life more comfortable. As the frequency of her seizures increased, reaching as many as 20 per day, Jennifer felt increasingly alienated from her peers.
When Jennifer was in the eighth grade, her family moved to Houston. This provided an opportunity for Jennifer to transfer to a small, private school, where staff were more understanding of her condition. Because Jennifer was frequently absent, her teachers would fax her assignments to her. Even so, they feared the unpredictable nature of Jennifer’s seizure activity. She was unable to go on field trips, or even to go on the senior class trip. When Jennifer graduated from high school, an escort was assigned to walk down the aisle with her. Although Jennifer’s classmates were accepting, she could not help but compare herself to them. Being unable to participate fully in school activities, or even to drive, left Jennifer feeling "stupid."
Following graduation, many of Jennifer’s friends left to go to college. This was a tough period for Jennifer, as she was forced to remain at home because of her seizures. Eventually, though, Jennifer was able to resume her studies thanks to a vagus nerve stimulator, which was implanted in her neck. This device emits electrical impulses that help to prevent seizures. Recently, Jennifer graduated from the University of Texas at San Antonio (UTSA) with a major in interdisciplinary studies and a minor in special education. She has already been accepted to a master’s degree program in special education at UTSA, and will continue her training there during the spring semester.
As Jennifer begins her career as a special education teacher, she is inspired to provide a positive learning environment for students who are differently abled. Drawing on her own experiences in grade school, Jennifer is helping to develop a program at the Clowvazar Academy, a new private school located here in San Antonio. Students ages 6 to 11 are being accepted for classes that begin on January 2. This program will feature small class sizes, a 5-hour school day, hands-on projects, and activities that build on students’ existing interests. It is Jennifer’s goal to teach practical skills that will help prepare her students to enter into a career as adults.
Although only 28, Jennifer’s persistence and courage have made it possible for her to live her dream of becoming a special education teacher. Having overcome many obstacles in her own life, she will surely be a wonderful role model for students as they confront their own challenges.
Lori Sherry: Morgan’s Wonderland Volunteer
By Annette Jennings
Lori Sherry is not afraid to take on challenges. Lori, who is 33, was born with spina bifida and hydrocephalus. Since February 2010, she has been a volunteer at Morgan’s Wonderland. Before joining Morgan’s Wonderland, Lori had been volunteering one day a week at the Spina Bifida Association, where she still works in the office. According to Lori, "I had been looking for something to do and got really excited when I heard Morgan’s Wonderland was being built and not too far from where I live."
A reserved, quiet person by nature, Lori’s position as a greeter at Morgan’s Wonderland has helped her become more comfortable in her associations with other people. Lori commented, "I’m a shy person. It (volunteering) has helped me to come out of my shell." Since she began at Morgan’s Wonderland, Lori’s speech has improved, and she finds it easier to look at people and smile. This change in Lori has been noted by others as well. Jere Delano, the volunteer coordinator at Morgan’s Wonderland, reported that Lori is more outgoing and self-confident than when she first came to the park. Jere went on to say, "It is a pleasure to see her smiling face at the Welcome Center each Friday as she opens the doors for people."
Lori’s enthusiasm for her work at Morgan’s Wonderland led her mother, Nancy Sherry, to become a volunteer this year. Nancy, who works at Tasty Treats, is impressed by the ease with which both volunteers and employees interact with visitors to the park. She observed, "Everyone is important." Nancy is also thankful that Lori is able to work among such "great people."
In addition to her volunteer work at the park, Lori has participated in a Zumba class that was offered there recently. Lori danced for eight years with the In-flight Dance Company, a group composed of dancers with and without disabilities, so she really appreciated the opportunity to return to dance. Currently, Lori is preparing to compete for a second year in the Rock ‘n Roll half marathon this fall.
Looking to the future, both Lori and Nancy intend to continue volunteering at Morgan’s Wonderland. Seeing others having a good time has been very rewarding to both of them and is something that they want to continue to experience.
David Lipsit: Successful Businessman
By Annette Jennings
On August 29, 1981, David Lipsit, a top-notch athlete and a student at the University of Nevada-Las Vegas, broke his neck while playing in the first football game of his freshman year. His injury left him paralyzed from the chin down.
After his injury, David had a lengthy hospitalization followed by a 9-month stay at an in-patient rehabilitation facility in Phoenix, Arizona. Despite the severity of his injury, David was determined that he would walk again one day. Though many of the rehab. staff and other patients thought he was a "joke," David remained committed to his dream of walking.
This dream was not easily achieved, however. Severe spasms caused David great pain. His doctors recommended performing tendon releases in which the tendons are cut, as a way to make David more comfortable. Knowing that the surgery would result in his never being able to walk again, he refused.
In 1984, David met Dr. Young, a specialist in physical medicine and rehabilitation, who shared David’s dream. After working intensively with Dr. Young on a near-daily basis, David succeeded in walking again 4 ½ years after breaking his neck. Today, he walks 90% of the time with crutches.
Soon after regaining the ability to walk, David and his mother re-located to San Antonio, in order to be closer to family and the support they offered. One evening, a financial services adviser came to their house to speak with David’s mom. After listening to the presentation, David realized that this was a job that he could do well.
Along the road to success in business, the greatest challenge faced by David was transportation. In a profession that requires you to be flexible with regard to where and when you meet with clients, not being able to drive was a huge barrier. Even so, David persevered, and for 3 ½ years, he took Via Trans to and from client visits. After one especially awkward evening when he waited for a pick-up for several hours at a client’s home, David decided that the time had come for him to get his own car.
Since he was short on cash, David visited the used car lot with the one thing he had of any value-a piece of jewelry. Amazingly, David managed to barter the jewelry for an old jalopy. The ability to drive gave David a tremendous sense of freedom and made it possible for him to really grow his business.
Today, David is a highly successful financial services coach. He and Vanessa, his wife of 10 years, have two young sons. He has been with Primerica for 26 years. David's favorite thing about Primerica is the before and after shot - not only for his clients but also for the people they hire and train. He loves to see the transformation in someone's financial life from being in debt to coming out of debt, from not knowing when they will retire to retiring in dignity, and from financial devistation to financial independence. David enjoys serving his community and will never tire of the dramatic difference he can make in someone's financial life.
David attributes his success more to "perspiration" than to "inspiration." However, he stresses the importance of hope. According to David, "Hope when you’re not supposed to. Never get fatigued about your dreams and goals, even when others do." Even now, David is enthusiastic about new advances in the treatment of patients with spinal cord injuries. Like his hero, Christopher Reeve, David believes that improved technology offers limitless possibilities to survivors of spinal cord injuries. With the determination of a star football player, David walks into the future with a can-do attitude and the expectation of better things to come.
Note: If you would like to learn more from David Lipsit about Primerica's financial services, he can be reached at Primerica, 2702 N. Loop 1604 E., Suite 101, San Antonio, TX 78232 or (210) 377-3103.
Stewart Swann: Inspirational Member of the Episcopal Church of Reconciliation
By Annette Jennings
According to the Rev. Robert Woody, Rector of the Episcopal Church of Reconciliation, Stewart Swann “demonstrates the gift of being uninhibited.” As a life-long member of the church, 25-year-old Stewart, who has Down syndrome, is an active and enthusiastic parishioner. He serves as both an acolyte and an usher, and regularly stands at the altar rail with fellow church members to receive a birthday blessing.
Bill Swann, Stewart’s father, noted that the church is a part of Stewart’s extended family. Stewart loves the other members, and his life has been greatly enriched by his involvement with them. Similarly, the church community has been blessed by him. One member commented, “Stewart is the church.” Though Reconciliation has always strived to welcome and embrace diversity, Stewart’s involvement has been especially important in preparing the way for an ever-growing relationship with people who have special needs.
A particularly strong relationship has evolved between the Church of Reconciliation and program participants at Reaching Maximum Independence (RMI), a non-profit organization providing day programming and residential services for individuals with developmental disabilities. This relationship began in 2009, when RMI held a fashion show at the church. Rev. Woody observed that the “joy (of the participants) was infectious.” Over the next several months, residents from the RMI apartment program across the street continued to visit the church for a variety of activities. Because members had been blessed in their relationship with Stewart, they were comfortable connecting with the RMI guests and were profoundly affected by their fellowship with these guests
.As a result of these experiences, it was very natural for the church to offer the use of its campus when Pam Kelly, RMI’s Executive Director, was searching for a new location for the RMI Life Enrichment Day Program. Since February 2010, when this relationship was established, the bond between church members and RMI residents has grown. Members regularly share lunch with Life Enrichment participants and serve as volunteers in daily activities. Several individuals from RMI now attend the church and occasionally serve as ushers during services. Recently, ten RMI participants were guests at the wedding and reception of Asst. Pastor Matt Weiss and his wife Amy. With the help of Chaplain Julie Woody, who volunteers with the Life Enrichment program each Wednesday, they made a Native-American gift tree, which was presented to the newlyweds at the reception. This very special gift included drawings and prayers from RMI attendees.
In reflecting upon the relationship that has developed between the church and RMI, Rev. Woody concluded that the church community has been blessed by the presence of RMI on its campus. He feels that this partnership is the fruit of church members’ relationship with Stewart who opened their hearts to active involvement with people with special needs. As a result, the lives of both RMI participants and church members have been enriched.
Phoebe Jacobi-Corletta: Mosaic Artist
By Annette Jennings
Phoebe Jacobi-Corletta is an extremely talented mosaic artist. Though her work is outstanding by any measure, it is even more impressive because Phoebe has a severe visual impairment.
At age 17, Phoebe was diagnosed with Stargardt’s Disease (also known as Juvenile Macular Degeneration), a disorder that results in the loss of central vision. Her first indication of trouble occurred while she was a senior in high school in Atlanta, Georgia. Phoebe, an accomplished violinist, began to have difficulty reading sheet music. Seeing the board in class and reading books also became major challenges. Initially, her ophthalmologist thought she simply needed a new eyeglass prescription. When stronger glasses didn’t help, Phoebe went to a specialist at Emory University, where she was given the Stargardt’s diagnosis.
The knowledge that she was losing her sight was life-changing for Phoebe. Though she no longer expected to have a career as a violinist, she did attend college at Southern Methodist University in Dallas. While there, Phoebe used closed-circuit television (CCTV) to read books and a software program called ZoomText, which reads the text on the monitor out loud, to use the computer. Assistive technology combined with Phoebe’s strong will to succeed, allowed her to graduate with a Bachelor of Arts degree in international relations and German studies. She later earned a Master of Business Administration degree from Georgia State University and worked in marketing with a large corporation for several years.
Phoebe’s interest in mosaic art developed in 2004, after she moved to San Antonio. The home in which she was living at the time had a raised garden with concrete planters. Hoping to make the planters more attractive, Phoebe set about learning how to mosaic. With the aid of binocular glasses (similar to jeweler’s glasses) and a keen sense of touch, Phoebe became an avid mosaic artist. Seeing her wonderful work in the yard, friends and neighbors soon began ordering pieces for themselves. These days, Phoebe regularly donates her work to retinal disease charities.
The challenges presented by Stargardt’s Disease are many. Even so, Phoebe has adapted. Not only has she earned two degrees and had a successful career, but she has also embarked on a totally new path as a mosaic artist. Rather than focusing on what might have been, Phoebe has chosen to live in the moment. According to Phoebe, “I make a conscious decision every day to be happy and to make it a good day.” In doing so, Phoebe has brought joy to others through the beauty of her work.
James Meadours: Self-Advocate
By Annette Jennings
San Antonio is proud to welcome James Meadours as one of its newest residents. James is a nationally-known self-advocate, who is employed by Disability Rights Texas, the legal protection and advocacy agency for Texans with disabilities.
Even as a child, James recognized the importance of self-advocacy. As a fifth- grader living in Louisiana, James was a die-hard New Orleans Saints fan. One day, Archie Manning, the star Saints’ quarterback, visited the fourth- and fifth-grade students to talk, sign autographs, and play catch. James, who was forced to take a second-grade adaptive PE class, was not allowed to attend. Afterwards, he complained to his mother that this wasn’t right. The following day, the PE teacher scolded him for protesting. Though he didn’t get to meet Archie Manning, this experience impressed upon him the importance of speaking up for yourself when faced with injustice.
As an adult, James first became involved with advocacy work in 1990 while living in Oklahoma. At the encouragement of a staff member from the Arc, he began to attend a group that provided information to participants about issues such as voting and living in the community. Before long, James became the first person with a disability elected to serve on the board of directors at the Arc of Tulsa. In this role, he became very knowledgeable about public policy issues and began travelling regularly to the state capitol in Oklahoma City to meet with senators, representatives, and state agency personnel about matters of concern to the disability community.
Advocacy became James’s full-time occupation in 1995, when he left his job at a clothing store to become a Volunteers in Service to America (VISTA) volunteer. During his two years with VISTA, James travelled throughout Oklahoma in an effort to increase membership in local self-advocacy groups.
As a testament to the importance of James’s years of involvement in helping to advance the interests of people with disabilities, December 9, 1996, was proclaimed James Meadours Day in Oklahoma. Before receiving this honor, James did not realize the impact that his efforts had on others. He likens his new-found awareness to the awakening experienced by George Bailey in It’s a Wonderful Life.
Since that memorable day, James has continued to devote himself to helping others find their voice. In his current position as a Self-Advocacy Specialist, James is involved with many projects. He is working with the San Antonio League of Self-Advocates (SALSA), an organization composed of individuals with disabilities who promote their human and civil rights, to help motivate others to join the group. James is also striving to educate those with disabilities about their rights under the Help America Vote Act of 2002 (HAVA). This act, which was passed in the aftermath of the 2000 presidential election in Florida, ensures that voters with disabilities are provided with secret ballots and access to the polls.
More generally, James is a frequent public speaker. In his speeches, he advises families on the importance of planning for the future, encourages assertiveness, and helps youngsters to recognize their potential. Though James often receives many positive comments after his presentations, he was especially touched by a letter he received from a teenager who heard him speak at her middle school. This girl, who suffered from an eating disorder, wrote to James to thank him for helping her to realize that she is a worthwhile person. His message proved to be an important first step in her recovery.
James’s work is central to his life, but he always makes time for his favorite hobby, slot racing. Indeed, the presence of a track in San Antonio has helped him to feel at home here. James appreciates the opportunity for relaxation among people who treat him as "one of the guys," not as a disabled person.
We in the Alamo City are fortunate to have James as a fellow San Antonian. In this difficult economic climate, which requires that tough choices be made, the need for people who can inspire others to speak out for themselves is paramount. James Meadours, a man who is passionate about improving the lives of people with disabilities, is such a person.
LeVan: Creator of the Multiple Sclerosis Symptom Experience Kit Program
By Annette Jennings
Jinjer LeVan is a true entrepreneur. In 1991, she was diagnosed with multiple sclerosis (MS), a disabling neurological disorder. Prior to her diagnosis, she experienced a 20-year search for an answer as to why she was having seemingly unrelated symptoms – including migraines, eye pain, fatigue, numbness, and spasms. After diagnosis, she realized how little is publically known about MS, and how the invisible symptoms of this disease affect public opinion of a person’s health. The most common comment is "but you look so good," which gave her the idea of finding a way to make the invisible symptoms visible.
In 2008, she had the opportunity to apply for an entrepreneur grant from the MS Society and the Kanaly Trust Foundation. She developed a kit that included items to simulate some of MS symptoms with easy-to-find items such as gloves, shoes, swim fins, and eye glasses with partially covered lenses. The kit also includes everyday items such as button shirts, shoes with laces, a peg game, cards, wallet, cell phone, and more. By wearing gloves and trying to do activities such as tying a shoe lace or buttoning a shirt, people come to understand how difficult basic self-care tasks can be for people with MS. Walking with flippers mimics walking with "drop foot," a condition common to people with MS. Wearing the glasses provides the experience of having impaired vision from optic neuropathy. The main purpose of the kit is to raise awareness, and it’s working. Since being awarded the first grant in 2008, she has received two more grants to make 16 additional kits. Jinjer has travelled throughout Texas providing demonstrations for thousands of individuals at nursing and medical schools, corporations, businesses, various support groups, and health fairs. In 2008/2009, she reached 4,539 people. Last year, she reached 5,976, and she trained several volunteers who offered demonstrations to another 4,458 people. More important to her than the numbers, is the actual impact the kit has on a personal level.
Many people who have "tried on" MS have said, "I get it now. I understand how my family member feels." Others, who have MS themselves, have commented, "This is what life is like for me. Thanks for letting people know." It’s comments like this that let her know the program is working. Jinjer shares one experience about a teenage boy diagnosed with MS who was so excited about the symptom kit that he hurried to get his mother. He wanted her to see for herself what it was like for him to have difficulty walking or to be so fatigued that it was hard to do even simple jobs. On mornings when it was tough for him to get out of bed, his mother would sometimes become angry, thinking that he was just being lazy. When she experienced first-hand what it was like for her son, her attitude toward his behavior changed dramatically. The experience allowed her the opportunity to really see her son.
Looking to the future, Jinjer plans to provide information on the internet that will allow others to assemble kits like hers. She’s done the trial and error, and knows what works and doesn’t work. Her hope is to save others from the need to reinvent the wheel, and hopes to bring uniformity within the MS community. This will allow people all over the world to increase awareness about MS. What began 3 years ago with Jinjer’s dream to develop a simple kit, has now grown into a program that has the potential to help people well beyond the boundaries of San Antonio and the Lone Star State.
Bobby Henline: Iraq War Veteran, Comedian, Motivational Speaker
By Annette Jennings
On April 7, 2007, during his fourth tour in Iraq, the Humvee in which U.S. Army Staff Sergeant Bobby Henline and four others were riding struck a roadside bomb. Bobby, the only survivor, sustained burns over 38% of his body and lost the use of his left hand, which later had to be amputated. In total, Bobby has endured more than 40 surgeries to address his injuries.
Throughout his ordeal, Bobby has used humor as a way of coping. While a patient on the burn unit at Brooks Army Medical Center, staff members, who had witnessed first-hand his ability to make others laugh, encouraged him to do stand-up comedy. Although reluctant at first, he gave it a try and loved it. Today, he performs regularly during open mic sessions at the River City Comedy Club and Laugh Out Loud.
Comedy has proved to be a terrific way to increase awareness. Bobby’s goal is to help others see burn survivors as people who, despite their appearance, are like other people. By joking about how he looks, he also hopes to help burn survivors become more comfortable with themselves. It is Bobby’s belief that “with laughter comes healing.”
Much to his surprise, Bobby has discovered that simply telling his story is yet another way to promote healing by providing others with the inspiration to overcome obstacles in their lives. To this end, he speaks frequently to students, veterans, and people with disabilities. Recently, Bobby was the keynote speaker during Veterans Day celebrations at the Ronald Reagan Presidential Library in Simi Valley, California. According to Bobby, “If I help only one person out of a thousand, then what happened to me was worth it.”
In surviving a horrific explosion, Bobby Henline says that he has been given a gift. Through his comedy and public speaking, he has chosen to share the gift of his life with others. In so doing, he has helped countless people to change their lives for the better
Special Olympian - savannah Grantham
By Annette Jennings
Savannah Grantham ("Savvy"), a 17-year-old student at Ronald Reagan High School and a huge fan of bowling, won a gold medal at the Region 20 Special Olympics bowling tournament held November 12 at Bandera Bowl. For Savvy, this is truly an event that she looks forward to all year long. Having placed 3rd in 2009, she has worn her bronze medal every day since. When she received the gold medal, she made it very clear that it would not replace the one that she won last year. rather, she prefers to wearboth. In keeping with the spirit of Special Olympics, it is not the award that holds the greatest value for Savvy. it is attending the practices with her classmates, riding on the bus to and from the bowling alley, and hearing the wonderful crashing sound of the pins as they fall.
Savvy’s enthusiasm for bowling is an extension of the excitement that she has for life. She laughs freely and often. Her smile is contagious, as is readily apparent on the faces of those around her. Indeed, it is her "spunkiness" and zest for life that are largely responsible for her being with us today.
As an infant and young child, Savvy had a multitude of serious health problems-complications from heart disease, breathing difficulties, severe feeding problems that required her to be fed through a tube, and seizures. During her first year of life, she spent more than 100 days in the hospital. Despite ongoing challenges, she was not deterred. At age 3, she began to walk; and at age 4, she began to take food by mouth. Her first word, "Mama, " which she rightly screams out with much gusto, was spoken at age 7. As the years have passed, Savvy has continued to make slow, but steady, progress.
Today, Savvy, who happily has not been in the hospital for over 2 years, lives in the moment. Aside from bowling, her great passions are driving through Sonic for a grilled cheese and tots and going to garage sales on Saturday mornings in search of even more Elmo dolls.
Though Savvy has many admirers, I must confess that as her mother, I am her greatest. Her life is an embodiment of the Special Olympics motto: "Let me win. But if I cannot win, let me be brave in the attempt." Not only has Savvy been brave in the most difficult of circumstances, but she has also managed to do it with a smile on her face. She is truly a winner!
Making wheelchairs fun and functional!
Artist Len Hernandez
By Annette Jennings
Len Hernandez, 39, is a big man with a passion for art. He and his wife Barbara, along with their two poodles, moved to San Antonio from Liberty, Missouri, two years ago. One year prior to their move, Len, who has had difficulty with his back for the past 10 years, experienced a sudden change in his condition that rendered him unable to control his legs beneath the knees. As a result, he now uses a wheelchair for mobility purposes.
With intensive therapy and the support of family and friends, Len has been able to continue with the work that he has been doing for the past 18 years. As a manager for the largest theme park concessionaire in the world, Len hires and trains the artists who draw caricatures, airbrush shirts, and apply temporary tattoos and face paints. He also works as a tattoo artist at a local tattoo studio. Though Len’s artwork is much the same now as it was before he came to use a wheelchair, he has recently identified a potential new outlet for his creative talents as a designer of custom wheelchairs. According to Len, “I am also looking to break into the wheelchair business as a designer, specifically designing cool wheelchairs for all sizes that not only make life easier for the user, but fun!”
As a large man himself, the issue of size has special significance for Len. His motivation to design wheelchairs for both big and small users stems from his own difficulties in obtaining a chair. After a long search, during which time he was forced to use a chair poorly designed for someone of his size, Len finally located a company that makes wheelchairs for people weighing up to 400 pounds. Having injured his shoulders and elbows using his previous chair, Len’s enthusiasm for his new chair is evident as he describes the relative ease with which he now goes about his daily activities.
Len is also concerned about the lack of access to water activities for people who use wheelchairs. He feels that the aquatic therapy that he received in Kansas City during the year preceding his move to San Antonio contributed significantly to his progress. Len is excited about the eventual opening of an accessible pool featuring zero-grade entry at the Pam Stephens Center, but laments the scarcity of such facilities in the Alamo City.
For those interested in seeing Len at work, he will be drawing caricatures free of charge at AccessAbility Fest, which will be held at Morgan’s Wonderland on Halloween Day.
To learn more about Len and his art, you may visit his website at http://www.lenhernandez.com/.
Psychiatric Service Dogs - how Destry, the Belgian sheepdog changed Elaine's life
Elaine Jordan’s history with psychiatric illness has been a difficult one. Having been diagnosed with severe anxiety and depression, she had major episodes in 2000 and 2005 that left her unable to leave the house for months at a time. Due to the effects of her illness and medication, Elaine would sleep as long as 20 hours a day. Her ability to participate fully in activities with family and friends had been taken from her.
While surfing the web in 2006, Elaine became aware of psychiatric service dogs. This discovery has proven to be life-changing for her. She and her Belgian sheepdog, Destry, trained for 2 years. Though Elaine occasionally had second thoughts about using a service dog due to fears of being seen as disabled, she persisted. Now, among his many commendations, Destry is certified as a “good canine citizen” by the American Kennel Club. His pleasant disposition has made Destry very popular, but the quality that Elaine most appreciates is his uncanny ability to read her emotions.
Destry is able to sense an impending anxiety attack and alerts Elaine by engaging in “intelligent disobedience.” Normally, Destry will lay at her feet, but prior to an anxiety attack, he will lay his head in her lap. Due to Elaine’s trust in Destry, she will take medication to lessen the effects of the attack before it actually occurs. Having a service dog has also made it possible for Elaine to benefit from breathing exercises. Before Destry came into her life, Elaine had great difficulty focusing and was unable to do the exercises. Destry provides her with a focal point. Elaine concentrates on his breathing pattern and the beating of his heart, which enables her to adjust her own breathing pattern. His gentle nature has a calming influence on Elaine.
When Elaine dissociates (enters into a dreamlike state), Destry is there to bring her back to herself. He does this by repeatedly butting his nose into her head until she returns to awareness. Elaine, who suffers from agoraphobia, now finds it easier to leave the security of her home. Because Destry provides a buffer against people crowding her in public, Elaine has more confidence in herself. Indeed, Destry has become more than a service dog or a pet to Elaine. Through his devotion, he has become her friend, offering unconditional love in the good times and the bad.
Elaine credits Destry with giving her life back to her. She is once again able to enjoy camping, swimming, and horseback riding. With Destry as her companion, Elaine is able to fly and has visited places such as the Grand Canyon and Washington, DC. On a daily basis, she holds a part-time job and finds it much easier to do household errands and tasks. Of Destry, Elaine says, “He allows me to be me again.”
When asked what advice she has for those considering having a psychiatric service dog, Elaine had three recommendations. First, consider whether or not you are capable of taking care of the dog. According to Elaine, “Taking care of your service dog is as important as having one. It is part of the bonding that needs to take place and part of the therapy….” Second, be aware that there are few schools available to assist with training a psychiatric service dog. The training is time consuming and can involve considerable expense for the owner. Finally, be prepared to answer questions. People are curious about service dogs and may ask what you consider to be rude questions regarding the nature of your disability.
For a more complete understanding of the relationship between Elaine and Destry from Destry’s point of view, you can read his journal at www.dogster.com/dogs/309209. If you would like to learn more about psychiatric service dogs, you may visit www.psychdog.org.
Submit stories about people with disabilities, their accomplishments and contributions to our community at firstname.lastname@example.org.