Being young in the city was what Sarah Keitt was doing four years ago. "I was 30-years-old, single, living in Adams Morgan in D.C., doing a lot of music," said Keitt. "I had just started with my band. I had just started working at a national health organization. I was teaching graduate school."
Then, her everyday walk to work got difficult. She'd arrive exhausted and out of breath. "I went to the doctor thinking maybe I was anemic," said Keitt. He told her that she might just be depressed. Then again, maybe she had pulmonary hypertension. "I eventually just got sick of going for test after test," said Keitt.
She started to feel better. "Then one day I woke up and my leg was completely numb," said Keitt. And after a few weeks, the other one went numb too. She could walk, but the skin lacked any sensation. In addition, she developed optic neuritis, which disabled her vision in one eye.
She wound up in the hospital.
THE DIAGNOSIS of multiple sclerosis came relatively quickly after that. "I was pretty much a text-book case," said Keitt. The fact that she was a 30-year-old white female, who grew up in a northern region, Hingham, Mass., placed her in the most typical demographic group for MS. In addition, she'd been diagnosed with ulcerativ colitis when she was 20, another auto-immune disease, and she was experiencing vision loss.
"For the first few weeks, I felt like my life was over," said Keitt. But she was still in the throes of her symptoms then, and when her system calmed down, she went back to normal. Or almost.
"There are concessions that I've had to make," said Keitt. "One of the problems I've had is cognitive function. Things that once came naturally, I had to work at. I couldn't just pull things off the top of my head." Keitt felt this interfered with how she taught her graduate class in Behavioral Cognitive Theory, so she decided to give it up.
"I'm a believer in people taking responsibility for their own health and condition," said Keitt. So within a month of learning that she had MS, she contacted the National Multiple Sclerosis Society, and got involved with a group in Reston for the newly diagnosed.
She was glad she did, because the culture of her workplace didn't lend itself to the difficulties she was having. "I knew that I had to speak up or I wouldn't do well at my job." The society helped her talk to her employer about how her needs could be accommodated.
A year or so after her diagnosis, Keitt was booked to play guitar and sing at an art studio open house. She thought she was the only act. So did the man who was the other act. "I looked a mess," said Keitt. She'd been playing the guitar for several hours, and her MS was acting up, when the other performer walked in. "He looked great," said Keitt. She loved his singing. And then he played her favorite song "Diamond in the Rough," by Shawn Colvin.
His name was Geordie, and they talked, and exchanged e-mail addresses. Finally, after about three months, they went out. Six months later they got engaged.
"One of the first things she told me about herself was that she had MS," said Geordie Keitt. "It was never an issue for us."
BUT IT BECAME an issue in another important area of Sarah Keitt's life, her musical performances. "It's difficult [now] to do several things at once, singing, playing the guitar, interacting with the audience." For this reason, she doesn't perform in public anymore.
Still, Sarah Keitt considers her MS an everyday part of her life. "For the most part, I don't even remember I have it. I don't want to be defined by it."
What Sarah Keitt does remember most days is that somehow she is living in Reston now, instead of her beloved Adams Morgan. But the townhouse in Reston, in which Geordie Keitt was living before they married, could easily accommodate a child. And Sarah and Geordie are anywhere from three to nine months away from becoming parents through adoption.
"The cost of trying to conceive is quite high for women with MS," said Geordie Keitt. During the year that they tried unsuccessfully to conceive, she went off her medication because it's contra-indicated for pregnancy. Her MS went unregulated, and became more symptomatic. "Ultimately we chose to take a break from trying to conceive so that she could get back on her regimen, and she improved so much that we didn't really want to take her off it again. That is one reason why we are adopting ..." said Geordie Keitt. "We expect it will be as much of a blessing as having a child by birth."
DURING THE PAST YEAR, Sarah Keitt began volunteering as an advocate for the National MS Society. "It is a disease that can make you feel very helpless," said Sarah Keitt. "Advocacy helps put you back in a position of control."
If advocacy makes Sarah Keitt feel empowered, her master's in public health and her many years of working for non-profit health organizations such as the National Association of Maternal and Child Health Programs, Partnership for Preventions, and the Society for Women's Health Research empowers the causes of the National Multiple Sclerosis Society
Sarah Keitt believes that advocacy can directly effect the lives of people with MS. For example, clients of Metroaccess, a special service that will send a wheelchair van to take people with disabilities to the Metro, were experiencing long waits, and problems with drivers such as unreliability, rapid turnover, and unfamiliarity with routes, as well as failing to show up for scheduled pick-ups. MS advocacy has served to improve the situation.
Drug issues are another area where advocacy has improved things for people with MS. Four drugs, called disease modifying agents are used to treat MS, but they aren't interchangeable. They have different side effects. Each one serves people with certain profiles. Yet, only one is approved in the Medicare prescription drug plan. "We've been pushing to have all four approved, said Sarah Keitt, who takes Copaxone.
Taking these drugs in the form of a shot, which many people with MS must do on a daily basis, once required a trip to the doctor's office, perhaps because it is not a simple dose to take. "When we first started going out in 2001," said Geordie Keitt, "I asked if I could help her in any way with her treatment routine, so she taught me how to prepare and administer her Copaxone."
Back then, taking Copaxone meant dealing with a complicated set of paraphernalia. "I had to learn how to handle sterile needles without contaminating them, how to draw saline into a syringe, knock the air bubbles out, load a trigger gadget that performed the actual stick, and dispose of stuff and clean up," said Geordie Keitt. Now, all the saline and medicine is premixed, and the whole process is much simpler. And because of advocates like Sarah Keitt, it can be done at home.
At the beginning of June, Sarah Keitt was part of an eight-member delegation of Virginia advocates that met with U.S. Rep. Jim Moran, and staff in the offices of U.S. Sen. George Allen, U.S. Sen. John Warner, and U.S. Rep. Eric Cantor. She said that the meetings went well. "They're not suddenly open to everything you are asking for," said Sarah Keitt. But usually they won't say no. "But they don't want to promise money," she said.
The National Multiple Sclerosis Society was asking for a 10 percent increase in funding for the NIH, passage of the Lifespan Respite Care Act, congressional monitoring of the implementation of the prescription drug benefit under Medicare, and the dedication of $125 million oÄ a demonstration project under Medicare for covering people with MS and all four MS therapies, said Kate Severson, communications manager for the society.
WHEN SARAH KEITT isn't advocating for people with MS on Capitol Hill, or working four days a week as a project associate for the American Medical Student Association, or putting together CDs so that she can donate the proceeds to the Adams Morgan Free Clinic, she entertains people with her sense of humor.
Recently, she and her husband planned to throw a surprise party for her brother at a house they'd rented at the beach. Her brother, who loves the beach, is also fun-loving. But Sarah Keitt told him that some of Geordie's cousins would be attending, and that they were offended by drinking and poker playing, so those activities would be banned during his visit. She also indicated that there would be prayer-meetings. "She's an evil genius," said Geordie Keitt. Her brother was very surprised and happy when he found that his sister had "lied through her teeth," said Geordie Keitt.
Sarah Keitt brings her brand of humor to the most unlikely places, such as the National Multiple Sclerosis Society. "You'll be looking across from her at a meeting, seeing her smile and knowing some dry-witted comment is coming," said Shannon Stapleton, director of Family Services for the National Capitol Chapter of the National Multiple Sclerosis Society.