Connie Taylor will be prepared if diabetic retinopathy claims more of her sight. At 52, she has been struggling with her vision for decades—ever since 1988, when she had her first laser procedure to cauterize the extra blood vessels that were growing in her eye.
That was 17 surgeries ago. Now Connie is preparing to manage the condition that her friends at the National Federation of the Blind (NFB) treat as a mere nuisance: blindness. She is enrolled in an eight month program at Blind Industries and Services of Maryland (BISM), where she will learn to manage life without sight. “It’s hard to say if or when the rest of my vision will go,” says Connie, who admits that people questioned why she would enroll in a program that will have her in sleep shades all the time. If they were going blind, they told her, they would want to go out and see everything they could see while they still had some sight left. Connie understands their point of view, but “learning how to cope gives me confidence,” she says.
Connie has been learning how to cope for a long time—since she was diagnosed with diabetes at age 12. It was Halloween, and Connie remembers that the doctor told her she could go trick-or-treating but not eat anything. Before the diagnosis she had been losing weight and her parents thought she was simply shedding her baby fat. Then, as she got thinner, they became worried she had cancer. There were no diabetes support groups and her parents would not let her attend diabetes camp because they feared she would be viewed as handicapped. The idea of diabetes management was limited to a blood sugar test, in a doctor’s office, every three months. “Physician care at the time helped to teach me my denial skills,” states Connie, and says that a lot of what she did was “to prove” that she was “normal.” She realizes that, in today’s terms, she never had good control of her diabetes.
Connie spent most of her life thinking that if she got sick, she would die. When she graduated from college in 1978, she got involved with a juvenile diabetes foundation in Virginia, where, at 21, she was considered a survivor. Over the years, as awareness grew and treatment changed, Connie says “I already knew that I could live and survive the way I had been taught” and had difficulty trusting the medical specialists, who were now advocating new ways. She calls the experience of managing the physical, medical, spiritual and emotional components of her life a “desperate struggle,” but she works hard to control her blood glucose levels by using the Prodigy talking meter and an insulin pump. Despite a diabetes educator telling her she could not use the pump when she began to lose vision, Connie persevered. “My technique is not as fine tuned,” she concedes, “but it’s still doable.”
Connie is determined to move forward. After one of her eye surgeries in 1992, she went back to school to become a nurse. She used magnifying glasses, tape recorded lectures, borrowed her friends’ class notes, and says she got through by “plugging at everything.” She tried to get assignments on certain sides of the hospital because if the sun was shining she could not see. She had four or five pairs of glasses that she would flip through to adjust the light so she could get through the day. Connie says she was “fighting through the fear” of what would happen to her if she didn’t make things happen for herself.
It has always been hard for her to let other people share her diabetes with her, she says, and her vision loss is no different. Rather than ask for help, she confesses that she “had pretty much limited [her] life” as her vision worsened. She remembers standing in a movie theater in tears because she couldn’t find her way, and giving up eating out because restaurants were too dark. But learning to use the white cane has allowed her “to start living again.” The first day she met Amy Phelps, her travel cane instructor at the NFB, they were practicing in the hallway. Before Connie knew it, they were outside and entering a restaurant. “I don’t do restaurants!” she protested, but there they were. Connie allows that she simply did not know how to accommodate her vision loss, and had given a lot up. Her fear of having to rely on everybody else was holding her back. Her involvement with the NFB, she says, is rapidly changing that attitude.
Amy Phelps, who is now Director of Rehabilitation at BISM, says that leaders there “share the philosophy of the NFB that you can do what you want to do,” and that their program is about “learning at a gut level that it’s OK to be blind.” There is great power in learning from blind people, she observes. As Connie embarks on her training journey, she is hopeful that her job as a liaison nurse in the shock-trauma department at the University of Maryland Hospital will be waiting for her when she finishes in eight months. In the meantime, she says, “I look at each day as a new opportunity to try again, and learn new ideas.” That and the skills she is learning will allow her to live the fullest life possible, on her own terms.
About the Author
Elizabeth Lunt, MS, has worked in publishing and libraries for many years. She is the editor of Voice of the Diabetic and would like to hear your comments about this article or any other in the magazine. Please send Letters to the Editor to: Elizabeth Lunt, Editor, Voice of the Diabetic, 1800 Johnson Street, Baltimore, MD 21230 or [email protected].