Living with intention: Life as a student with Epilepsy

Kiley+Flowers+lowers+her+blinds+in+her+room+at+her+apartment+in+Lincoln+Park+to+take+her+daily+nap.+Flowers+emphasized+the+importance+of+how+enough+sleep+can+positively+or+negatively+affect+her+health.

Madeline Ruhl

Kiley Flowers lowers her blinds in her room at her apartment in Lincoln Park to take her daily nap. Flowers emphasized the importance of how enough sleep can positively or negatively affect her health.

Kiley Flowers, a DePaul University senior, lives with epilepsy, a neurological disorder  characterized by recurrent episodes of seizures. She lives independently in the city and is able to lead a functional life taking classes, hanging out with her roommates and, most importantly, is seizure-free. 

Flowers first received her diagnosis in 2014. 

Kiley Flowers opens her tin box of medications in her room. (Madeline Ruhl)

This diagnosis came after experiencing seizure episodes and doctor and hospital visits at 13. She was told by doctors that she would never be able to live on her own, never be able to drive and would most likely be collecting disability for the rest of her life. 

“In some ways, I was relieved that I finally knew what was wrong with me,” Flowers said. “For so long, they had no idea what my diagnosis was, but ultimately, it felt like my life was over.” 

Kiley also recalled that with the diagnoses, she began having severe depression in which she would not even be able to get out of bed, soon accepting that looming seizures were her fate forever.

According to the Center for Disease Control and Prevention (CDC), over 3.4 million people are living with epilepsy nationwide. If left untreated, it can result in long-lasting seizures, and in rare cases SUDEP, which is sudden unexpected death.

Flowers has to take a myriad of medicines twice daily to ensure that she does not have seizures throughout her day. Seizures are a symptom of epilepsy. (Madeline Ruhl)

Yet, every assumption her doctors have had about the future have been untrue. After spending years changing medications, with the help of her doctor, she was able to secure the perfect prescription. She is happy to report that she is thriving at DePaul. She even notes that it has changed her mind set to appreciate her life. 

“I never take getting out of the bed in the morning for granted because there were days that I thought I wouldn’t ever be able to,” she said.

Epilepsy has also affected the lives of her roommates who felt as if their lives had also been changed by epilepsy, but for them, it was for the better.

 “Living with someone with epilepsy has made me more aware of hazards that I used to never think twice about,” wrote Nadia Chavez, Flowers’ roommate, in an email. 

She talked to me about a time that the light started flickering in their apartment bathroom and Chavez would have thought nothing about it originally but remembered the negative effects on Kiley and made sure to change it.

This is not without work. Flowers has created a lifestyle for herself that has been able to ensure there are not unexpected seizures. Her day includes daily walks, midday naps, rigorous medications and making sure she stays out of flashing lighting.

Flowers walks down Fullerton from her apartment to the train station. She enjoys walking to as many places as she can. (Madeline Ruhl)

The university also ensures that Flowers and every other student living with her same diagnoses can live and study safely. When reaching out to the Center for Students with Disabilities, assistant director, T.C Schneck commented that students with epilepsy at DePaul are set up for success and said students can “… submit a Seizure Action Plan, which is written and signed by their doctor.” 

This plan would list:

  1. The kinds of seizures the student experiences and how often they occur. 
  2. The corresponding symptoms of each seizure type. 
  3. Specific actions faculty should take in regards to each seizure.

With these added security measures, Flowers is able to pursue an education with DePaul.

Flowers is fortunate enough to not let the diagnoses define her. Her medications have been consistent for the past two years, which is why she is able to tell her story today. 

“With getting the diagnoses and being on meds, you have to get in the mindset of being prepared if things go wrong because things go wrong in an instant,” she said. This is why she believes she is so mindful and intentional about her life. She has to value every second she has because she knows what it was like to not know if she would be alive the next day.

While Flowers’ future is unknown, she knows that she will value every day she has and that the education and independence she feels grateful to receive was not without years of struggle. Flowers is currently on track to graduate with a master’s in PR and advertising next year. She remains intentional and while she will carry epilepsy with her for the rest of her life, she is glad she can live it out.