By Julie Shapiro
Alexandra Levin woke up one morning in the summer of 2005 and could not walk.
Her first thought was that she’d had too much to drink the night before when she was out with her coworkers at Citigroup. But she didn’t feel better as the day wore on, and that night the right side of her face went numb.
Levin got an unofficial diagnosis the next day: multiple sclerosis.
“I immediately [thought] of crippled people in wheelchairs who can’t breathe on their own,” said Levin, a 27-year-old Battery Park City resident. “I Googled it immediately. Once I realized I wasn’t going to die, I was like, ‘I can handle this — it’s going to be OK.’”
Levin has few day-to-day symptoms and can still walk and play sports. A municipal bond trader at Citigroup, she has parlayed her job into a platform to raise tens of thousands of dollars for M.S. research.
This Sunday, Levin will join thousands of other fundraisers at South Street Seaport for Walk MS (walkMSnyc.org, 212-463-9791), an annual event benefiting the National Multiple Sclerosis Society. Participants choose either a 3- or 6-mile loop through the city and then return to the finish line on Pier 17, where food, music and massages await.
“It’s great that we have this reason to come together,” Levin said. “For those of us who have not been affected as deeply yet, this is a celebration of that.”
The event also gives Levin a yearly marker that she uses to trace her experience with the disease. At the beginning, she hesitated to tell her extended family that she had M.S., but she said she gradually “came out” to them over the last two years and now they walk with her.
Levin wants to form a nonprofit called MS Action Team that would raise money for research through other sports, like biking, rock climbing and figure skating. The events would also bring healthy athletes together with people in all stages of the disease, Levin said.
Part of the reason research is so important is that doctors don’t know exactly what triggers M.S. attacks, in which the body’s immune system attacks the brain and damages nerve connections, Levin said. The symptoms vary depending on which part of the brain is attacked, but can include blindness, difficulty moving, vertigo and pain. Heat, stress and alcohol could all play a role in causing attacks, Levin said.
In the summer of 2005, Levin was working long hours and running on hardly any sleep when her first attack hit. She has relapsing-remitting M.S., meaning that she mostly recovers after an episode, but symptoms like fatigue linger.
Levin continues to work at her high-pressure job at Citigroup and notices that the more stressed and tired she is, the more trouble she has walking.
“It’s very much an exercise in listening to your body and getting to know yourself,” Levin said. “In that respect, the disease has been a blessing, for me anyway.”
Levin grew up in Riverdale and remembers always pushing herself to work hard, first at Horace Mann and then at Harvard, where she studied philosophy, and later at Citigroup. After being diagnosed, Levin had to slow down and start getting more than four hours of sleep a night. One meditative outlet she has found is rock climbing.
One thing Levin won’t change about her life is her job, though she doesn’t work as much overtime as she used to.
“A lot of people have mentioned it, that I could work part-time or do something less intense,” Levin said. “I love my job….. I’m probably not going to be physically able to do the things I do right now, but while I can do them I will do the best I can.”
Levin added that she is lucky to still have a job — not just because of M.S., but because of the massive financial sector layoffs over the past few months.
As far as the future goes, “The way I like to think of it is basically not to,” Levin said. “There are so many drugs, and there’s so much progress.”
Levin gets weekly shots to slow the advancement of the disease — administered by her boyfriend, a medical student who recently moved in with her — which should limit her attacks to once every three years. She had her second episode last December.
Even with the drugs, most M.S. patients move into the secondary progressive phase of the disease within 15 years, and they no longer recover as much between attacks.
“Hopefully by the time 15 years rolls around, things will be different,” Levin said.
She fundraises aggressively, and was the country’s No. 1 Walk MS fundraiser several years ago, bringing in $83,000, mainly from her coworkers. Last year she raised $61,000.
This year she’d hoped for a similar showing but is lowering her expectations. Since the Dow dropped by half, she set a new goal of $30,000, but that could be tough to meet as well, she said.
Levin has lived in Gateway Plaza since 2004. She originally wanted to move to the West Village, but the spacious Gateway apartments won her over with their views of the Hudson River. Levin was particularly glad to hear last week that Gateway will remain rent-stabilized for the next 11 years, because her medical bills are unpredictable and she wants to save money wherever she can. Before insurance, her bills the first year she was diagnosed came to nearly $50,000, she said.
Levin has also started noticing the parts of the neighborhood that are not handicapped accessible — especially the E subway stop at the World Trade Center, which no longer has an elevator, though the community has been fighting for one.
If Levin learned anything from the past four years, it’s that she’s stronger than she realized.
“My parents totally freaked out,” she said. “I put my energy into things I can affect.”
Julie@DowntownExpress.com
