Shirley's Success Story

Circadian Rhythm & Blues: Shirley's Story

Published in 2019

Shirley figured being tired all the time came with the territory as a working mom. But when she started to fall asleep at her desk, in the middle of conversations and at the wheel while driving, she knew something was wrong.

A person's circadian rhythm includes physical, mental and behavioral changes that follow a daily cycle. This includes a natural sleep cycle of sleeping at night and being awake during the day. A neurologist diagnosed Shirley with narcolepsy, a chronic disorder related to circadian rhythms that affects the brain's ability to control sleep-wake cycles. Shirley was advised to stop working until they could get her symptoms under control, so in 2009, she began receiving Social Security Disability Insurance (SSDI) and started a 6-year journey to manage the disorder.

"It was distressing to lose that sense of control over my life," she recalls. "…[and] stressful making ends meet on an SSDI check. I began to feel hopeless." Clinical depression and medications that caused headaches, nausea, and hallucinations made matters worse. "I was suffering more from their side-effects than from the symptoms they were meant to treat," she says.

Shirley consulted new doctors who recommended alternative approaches to improving her wellness. Under medical supervision, she stopped taking medications that were causing problems and adapted multiple aspects of her lifestyle. "I switched to a vegan diet, exercised 5 days per week, got into bed each night by 9 p.m., and [practiced] meditation,” she says. The results were encouraging. "I lost weight and gained peace of mind! Narcolepsy is not something that just goes away. It's a struggle every day. But I've learned to make adjustments in my life to work around the disability."

With her health back on track, Shirley felt ready to try work again. She looked forward to getting out of the house, returning to work and earning income to pay bills and contributing to her family's well-being. But like many people who have been unemployed for years, she had also lost her self-confidence and felt uncertain whether anyone would hire her.

"One day, I received a letter in the mail from an employment agency called America Works," she recalls.

"They invited me to attend a job fair where I would meet people who could help me… transition (to work)." Shirley says it felt good to take this first step. When she met representatives from America Works, they told her about Social Security's Ticket to Work (Ticket) Program.

The Ticket Program is a free and voluntary program that supports career development for people with disabilities who are ready for employment. Adults age 18 through 64 who receive Social Security disability benefits (SSI/SSDI) qualify. Through the Ticket Program, service providers known as Employment Networks (ENs) and State Vocational Rehabilitation (VR) agencies offer a range of support services to help people prepare for, find or maintain employment.

Shirley chose America Works as her EN and met with a trained professional (known as a Benefits Counselor) who educated her about other Social Security Work Incentives. Work Incentives make it easier for adults with disabilities to explore work and still receive Medicare or Medicaid and, in some cases, cash payments from Social Security. Shirley learned that her benefits would not end as soon as she returned to work, and this allowed her to focus on finding and adjusting to a new job.

She had a background in government Program administration and decided to pursue opportunities at local government agencies. America Works helped Shirley land a temporary administrative job with the city of Baltimore. She says it felt great to get out of the house again, be productive and interact with coworkers.

By the end of 2015, her anxiety about whether she would have the skills and stamina to work full-time was gone. Shirley moved on to a permanent role and in 2017, landed a new job as the Compliance Officer for Maryland General Services, where she serves many functions and has more responsibility.

"I [make sure] small [minority/woman/veteran-owned] businesses are represented on state contracts," she says. The work has given Shirley a sense of purpose, and she says employment has helped her maintain improvement in her well-being.

"I'm grateful for the help I received through Ticket to Work," she says. "It feels wonderful to have my independence back! I feel like I can rely on myself again. I've escaped the black outlook that weighed me down years ago. There are now bright colors on the canvas of my future!"