Stories and Viewpoints

Patient Inspiration

By: Niki Kapsambelis

May 29, 2024

When Tisha Powe explains to people how she feels during a relapse of multiple sclerosis, which she has lived with since 2009, metaphors help her paint the picture.

In one, she’s on a highway, running late on her way to work. Everyone around her is zipping along at 80 miles per hour, but no matter what she does, she can’t make her car go any faster than 40. Traffic around her is chaos; everyone is beeping at her and passing by in frustration.

When she feels that way, Tisha – normally a high-energy person who works as a bookkeeper and has dabbled in stand-up comedy -- now recognizes that her body is telling her to slow down, pause, and dial back on her activity for a little while.

By contrast, when she comes out of a relapse, “I’m me, and that feels amazing,” she says. “My friends call me Super Mom. I’m creating, I’m crafting, I’m working on comedy, just doing things – just busy, living life the best way I know how.”

Stressful situations can trigger her symptoms, so she has learned to be extremely mindful of how she spends her energy. In fact, when she was first diagnosed, she had just experienced a major life trauma in the death of her father.

“On the outside, I was handling it so well; I was smooth,” she said. Inside was another story: “It was kind of metabolizing on the inside really ugly. By day three, I was not able to walk. I could not use my legs.”

She went to the emergency department of a hospital. When she learned of her diagnosis, she was 32 years old, the mother of three young children.

Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system and the leading cause of neurological disability in young adults. It affects approximately 2.8 million people worldwide, according to the National Multiple Sclerosis Society.

At first, Tisha struggled to find the support she needed to deal with her condition. Not everyone close to her understood the challenges she faced.

A friend told her about another metaphor that she likes: Imagine starting the day holding 20 spoons, each of which represents some of your energy. You give them away to different people throughout the day: one for your boss. One for your child. One to your partner.

When you have MS, you might start the day with eight spoons instead of 20, Tisha said, and you have to be careful in how you distribute them, because one argument or disruption can wipe them all out at once and incapacitate her, like a cell phone battery suddenly dropping to zero.

“And then here you are with a relapse, or your body responding to the stress that came out that you endured,” she said. “Mine comes out in muscle spasms, problems with my speech, with my walking. When I’m not able to walk, that’s very humbling for sure.”

When she relapses, she feels as though she is walking on stilts, traveling slowly with someone’s hands pressing lightly on her back, and she could fall forward at any minute.

At first, the lack of support made it worse. She worried that people thought she was faking her symptoms.

“It was proving season for awhile,” Tisha admitted. “It took a long time to get through that because I was bitter.”

Reconnecting with her sense of spirituality helped Tisha begin to improve mentally and emotionally. She started to monitor what she was feeding her mind, making a conscious effort to stop dwelling on what bothered her.

She also focused on losing weight; in addition to MS, she has diabetes. She lost 116 pounds, which helped to address some of her additional health issues. Because she found that she had trouble consistently taking medicine daily, she worked with her neurologist to find a medication that would fit into her lifestyle.

Each morning, she gets up at 5:30, exercises, and connects spiritually. She takes her youngest daughter to school, works a full day, starts preparing dinner on her lunch break, and picks her daughter up from basketball practice after work.

She tries to lie down after her daughter is home for the evening to conserve her resources.

“It is important for me to watch where I’m pouring my energy or what I’m allowing myself to absorb because I’m working with a limited source,” Tisha said.

If she were speaking with a newly diagnosed MS patient, Tisha said she would advise them to “watch your thoughts. Evaluate the situation, kind of take a step back, look at it from another angle,” adding that the disease is “something you can get through.”

“I understand I have MS, but MS doesn’t define me. It’s not who I am,” she said. “It is something that I deal with … Give people grace. You don’t have to know what’s going on with them to know that they may be hurting, or in need.”