Five Quarts_ A Personal and Natural History of Blood - Bill Hayes [88]
“Yeah, this is good to have,” she said. “Nobody believes me when I start telling them what I’ve got.” Her light blue eyes sparkled. “I’ll flash it now and then, and say, ‘Do not mess with me.’ ”
Cindy seemed to be drawing to a close her show-and-tell when I, like a nosy brother, prompted, “So, what else you got in there?” Her eyebrows lifted as she grabbed her purse: What indeed? She then rummaged and pulled out a cell phone—“Only for emergencies,” she explained. The phone company offers an inexpensive monthly plan for disabled people. Next out, an antique cough drop and a floaty pen, in which a BART train floats between San Francisco and her hometown, Oakland, followed by several old appointment cards for doctor visits—Cindy sometimes has six appointments a week. “You get really nasty hands driving a wheelchair,” she confided, now flashing a packet of Wet Ones. It was only then that I noted the wheelchair folded up and stowed to her left. Though she can walk with a cane, the wheels provide a speedier transport. One thing conspicuously absent from the purse of a woman Cindy’s age, though, was a tampon or two. Well, she explained, it’s too dangerous for her to bleed, so she takes an “industrial-strength” birth control pill that keeps her from ever having a period. This has been necessary since puberty.
The final stop on the pocketbook tour was a small case, imprinted with GIRLS RULE!, that contained business cards for her Web site, the sublimely named Shemophilia.org. Cindy explained that a former hemophilia treatment nurse here at the hospital had affectionately called all the female patients shemophiliacs. As Cindy was preparing to launch her site in 1999, the nurse graciously allowed her to, as Cindy put it, steal the name. Already in existence were informational sites focused on some of the more prevalent bleeding disorders, such as von Willebrand’s, but Cindy felt that “too many factor I’s and II’s were falling between the cracks.” The potential for feeling disconnected is far likelier when you’re just one of a handful of women in the entire country with, say, a fibrinogen deficiency or classic hemophilia. What was needed was an online “community center” for these individuals. Cindy hoped the site would become a forum where someone such as Christine Pullum could share her wisdom.
With the playful name Shemophilia, Cindy also sought to convey the user-friendliness rarely found in a pamphlet picked up at a doctor’s office. I think her instincts were spot on. FibrinogenDeficiency.org just wouldn’t have the same zing. Among people with bleeding disorders, she added, the term hemophilia is a kind of collective shorthand. In fact, she said with a laugh, when she’s tried to explain to someone her specific disorder, their eyes have tended to glaze over. “It’s often just easier to tell people I have hemophilia.”
In my experience, I’ve found that people who are strong advocates for peer support either never enjoyed it themselves or are taking the opportunity to pay it forward. Cindy is clearly in category two. In December 1991, two years after learning she’d been infected with the AIDS virus from tainted cryoprecipitate, she arrived at an HIV support group in nearby Pleasanton. As she took a seat in the host’s living room, she realized she was the only woman in a small circle of gay men. “At first, I was kind of afraid because I’d lived such a sheltered life and didn’t have a lot of experience with the gay world,” she recalled. “But from the start, they were so welcoming and wonderful. I called them My Tuesday Guys, ’cause that’s when we’d meet. And we’d always go out afterward—this chick with a cane and eight really good-looking gay men going out to Bakers Square.” She hooted with delight at the memory. “I’m sure people had to wonder.”
Much of her present-day passion for mentoring was inspired by the man who’d started the support group, Wes. “He taught me a lot of important things—about treatments and disability benefits and working the system.” Wes, who passed away five years ago,