Managing coursework and MS takes planning and self-awareness.
by Robert Lerose
Lisa Cohen had never been afraid to take risks. She left the security of a job in a high-pressure New York City law firm to follow her twin passions of managing rock bands and photography. After experiencing blurred vision and numbness down her body, she was diagnosed with multiple sclerosis in the summer of 2001.
Unable to safely continue in the music business because of increasing physical limitations, she eventually co-founded Makeover Your MS, a nonprofit that addresses the makeup and grooming issues of women with MS, and found a new purpose in her life. “I wanted to have some type of component to help them with their day-to-day [challenges]. That’s what made me interested in going to school for life coaching,” Cohen says.
Returning to school can be both daunting and exciting. For some, like 50-year-old Cohen, it’s a chance to start a new career. For others, it’s a way to sharpen existing skills, stay mentally active or just enjoy the companionship of fellow learners. Managing MS while staying on top of your studies starts with some self-evaluation.
“It’s just really understanding how MS impacts you and knowing that it may not be a straight four-year shot or a two-year shot. You may need to take longer to do that, and that’s OK,” says Nancy Lowenstein, a clinical associate professor of occupational therapy at Sargent College of Health & Rehabilitation Sciences.
Key points to keep in mind
In balancing your MS and school work, Lowenstein says to keep three things in mind: physical status (such as walking and muscle strength), cognitive abilities (the times that you function best mentally) and fatigue.
For example, if you have to attend a physical campus, consider whether it has elevators, ramps and curb cuts. Is it accessible to scooters, walkers or canes? What is the distance between your classes? How long will you have to get from one class to another?
For cognitive challenges, Lowenstein recommends talking to the school’s disability office. Sometimes the school may provide devices to help you take notes if you have trouble writing. You can also get permission from the professor to record the lectures or ask fellow students to share their notes with you.
Planning and transparency
Many schools offer online classes and degree programs, and some institutions began online programs instead of in-person classes as a result of COVID-19. Be sure to check.
Taking classes online eliminates many of the obstacles that traditional classrooms pose, giving you more flexibility, freedom, comfort and control. Often, classes are recorded automatically to accommodate fluctuating schedules, allowing you to access them at your convenience or when you’re most refreshed.
Another alternative is the so-called university without walls, where students work with advisers to create their own curriculum. At Northeastern Illinois University, for example, students are evaluated on their core competencies and not on how many credit hours they earn.
Managing your time and knowing what you can handle are key. “I encourage my patients to do an analysis of themselves and their time,” says Tracy Carrasco, an occupational therapist at the Orlando Health MS Comprehensive Care Center. Patients fill out an hour-by-hour chart of everything they need to do the next day, then write down what actually happens that day. This self-assessment allows them to see what changes can be made to improve their time management. “It gives them first-hand information rather than me telling them what would be beneficial for them,” Carrasco says.
Students with MS should factor in any additional medical costs. Depending on their situation, Lowenstein says that they may need to start at lower-tuition community or state schools, and then transfer.
Whether to disclose your MS diagnosis to your instructor or the school will likely not be an issue if you take online courses, but what about courses where you have to show up?
For the most part, it’s up to the student to decide whether they want to say anything, but telling the school ahead of time could work in your favor. Lowenstein says to discuss your situation with the school’s disability office to see if you need any special accommodations and what the school might be able to provide. Typically, the office will give you a letter for your instructors saying, for example, that you will be recording the lectures, you might need extra time for test taking, or you might miss classes — but the letter won’t specify your diagnosis and professors can’t ask you about it. “If you talk really honestly with the disability office, then you can iron out all these things with them, and they’ll help you with the professor,” Lowenstein says.
Going for the positive
Although Cohen could fulfill most of her program’s requirements online, she did have to attend some all-day workshops in person. One exercise required her to close her eyes and walk across a large room — a big problem that was mitigated because she already told them about her MS. “My classmates were very good about keeping me safe physically. It wasn’t easy and maybe took me a little longer, but it was doable,” she says.
Hannah Garrison, 30, was struggling to make a career as an artist when she was diagnosed with MS in June 2017. Like Cohen, the diagnosis is leading her back to the classroom. In May 2019, Garrison became an arts instructor at Hearts Need Art, a San Antonio-based organization that uses the arts to give emotional support and relief to patients with life- altering illnesses. “It was a way to bring humanity back into their lives. Even if I only spent an hour with them once a week or once a month, it was still such a good thing for me to see what it does for people,” she says.Garrison hopes to go back to school in 2020 to get her master’s degree in counseling/art therapy. Because of the physical complications of her MS (dizziness, heat intolerance and neuropathy) and financial considerations, she is leaning toward an online degree program or a hybrid teaching arrangement, giving her more control over her situation.
“Having a goal and pursuing something is incredibly helpful to keep your mind off your diagnosis and the negative things happening in your life,” Garrison says.