When FOF Bibi was a college freshman, she lost vision in one eye for a few days. The diagnosis was optic neuritis, an inflammation of Bibi’s optic nerve. Her vision returned, but the doctors said the episode could mean she’d eventually develop multiple sclerosis, which is inflammation and damage to nerves in the brain and spinal cord.
Bibi was fine for twenty years. She became a music teacher at a New York City private school, married Ted, a journalist, and had two children. (Coincidentally, Bibi was one of my son’s teachers and Ted worked for me as an editor, at the same time.)
Around the early 90s, Bibi could barely move in hot weather, but attributed her intense exhaustion to having young kids. “It also was hard for me to bounce back after my second child was born,” she told me. By now, you’ve undoubtedly guessed that Bibi was experiencing the initial symptoms of MS.
Within a few years, Bibi had to quit teaching because it became harder and harder for her to move. Today, Bibi’s left leg and arm are practically useless and she spends a great deal of time at home because she can no longer drive. “I go into weird contortions to get around in the house but use a wheelchair when we go out,” she explained. “I once asked Ted if I move like a drunk person, and he answered ‘drunk people move faster,” she remembered with a chuckle. The meds she was prescribed over the years were “horrible,” so she stopped using them.
“Ted has been amazing and my daughter has been an angel every single day of her life,” Bibi said. “Once, when she was a little tiny thing and I was having trouble maneuvering a snowed-in street, she piped up, ‘you can do it!’”
Bibi misses working and wishes she could at least volunteer to help older people. She’s grateful to friends who stop by and call, and talks about a former female student who visited often. “She’d call and say she was in my neighborhood and asked if she could come by for a chat,” Bibi related. “She actually lived 45 minutes away and was trying not to make me feel that she was going out of her way to see me.” The woman died in her forties of Hodgkin’s lymphoma.
When I asked Bibi if she resents what’s happened to her, she answered, “Compared to most of the world, I have it pretty great. Think about all the poverty. I can have a cup of coffee and biscotti.” I also asked what she likes to do when she’s alone during the day. “It’s all about surviving since it’s dangerous for me to move around and I worry about falling. But I love to read and listen to incredible music on You Tube, like Mozart, Bach and Schubert. Ted and I also love Dylan. I listen to music over and over and over.”