Once Claude and I are settled in her home office, I offer her the bottle of spring water I brought. It is Yom Kippur. When we had arranged to talk on this day, she mentioned that ordinarily in her tradition she would neither eat nor drink on this fast day, but that she has to drink water for medical reasons. She makes this concession but still keeps the fast in her own way by not eating. I soon learn this is typical of Claude: She does not resist doing what she must to deal with her illness, but neither does she let it interfere with her life one inch more than necessary.
She takes the water with thanks, pours us each a plastic cupful, and begins her story.
Claude was diagnosed with secondary progressive multiple sclerosis 15 years ago, when she was 35, just three years after she moved to this country from France. “As weird as it can sound, I was relieved because it showed that I was not completely nuts, that I was not just imagining. My mother used to call me Miss Catastrophe. My specialty was losing balance, just because the crack in the floor would be for me and I would zoom!”
Claude briefly explains multiple sclerosis for me by comparing nerves in the human body to electric wires: “You take an electric wire. You have a plastic coat around it to avoid short-circuit and prevent people to burn themselves. My body has decided that this coating is a foreign body and must be attacked.” She says that besides being physically debilitating, it is extremely painful. She does not dwell on this subject.
Many people with multiple sclerosis are not visibly different from anyone else. Looking at a stranger, you cannot tell whether they have multiple sclerosis or not. There is no known cure.
Claude herself uses a walker and a wheelchair at home and an electric scooter outside. She is very fond of her scooter. “My scooter is my legs. I go out without any worry or shame.”
Not far from Claude’s home is a subway station. Since she cannot drive, and her scooter cannot go far due to limited battery life, the subway is a primary method of transportation for her. The elevator in this underground station has been broken for over two years, she tells me. Claude does not allow that to deter her! She tells me of driving her scooter down the tunnel entrance intended for buses, the one marked “No pedestrians.” “The bus drivers, they know me,” she says. “I’m bold.” She pulls out her French/English, English/French dictionary and quickly looks something up. “Yeah, that’s what I am. I’m bold. I’m proud. I do things on my own. I am not someone who is going to be stopped by a disease.”
She also takes public buses. When a wheelchair or scooter user is a passenger in a bus or van, it is vital to their safety that their wheelchair or scooter be strapped down properly. The local bus drivers do not always do this, Claude tells me. “What should I do, clutch the bar, ‘Oh, oh, oh! I’m going to die!’? No.” She calls the MBTA authorities. “You report exactly what happened. What he didn’t do, and how endangered you were.”
She refuses to feel sorry for herself, or to let anyone else feel sorry for her. “My life is a little bit different from most people. I have more physical struggles. But let’s be honest: I’m blessed. I have health insurance. My husband has a job; I touch wood. Do you feel sorry? Come on! I’m blessed! You cannot say, ‘Poor Claude.’”
She is not always able to put on such a brave face. “I fall down. I cry. I cry and you won’t stop me, because life is not fair.” However, she adds, “I don’t want to talk about those moments. Carpe diem. You live on a daily basis and you try to have as much fun as you can, because you don’t know what the next day is made of. The next hour. I have always lived like that.”
Carpe diem—Latin for “Seize the day.” So what has Claude chosen to do with her days? “I said to myself, ‘Claude, you’re tired; you’re sick; it’s going from bad to worse—actually, from worse to worse. Why not do something you’ve wanted your whole life?’ I ended up doing my dream, which was writing.” She is currently working on a fictionalized history of her grandmothers’ lives. “I write for my son. I want to leave him something. I would like him to know about his heritage. I want him to have a sense of what it was and where it was. Also, I want him to know that his mom could be funny. I want him to find me in these writings.” She gestures to the tower of papers on her desk.
“Some people just give up and expect others to take care of them. ‘Oh, poor little me! Look what life is doing to me!’ This is beyond my understanding. The other solution is to keep on going. So I keep on going.”