Mariah Harris, 25, knows exactly what she would sing, if she could sing.
She knows the lyrics she would write: “I want a new life.”
At the moment, it’s the most she can offer.
On a recent weekday, her words were indecipherable to all but Kati Bursley, 24, her best friend from high school who serves as her personal interpreter these days.
Much as a loving mother would intuit a young child’s speech, Bursley understands Harris.
As she sits blanketed in a recliner inside the Grand Ledge, Michigan, home she shares with Bursley, Harris makes it known: This is not the life she expected.
Her multiple sclerosis has progressed quickly and devastatingly.
Multiple sclerosis is what some call a snowflake disease—it affects no one person the same. It has been particularly harsh on Harris.
Her thinning frame seems to sink into the recliner inside the mobile home she and Bursley purchased after dropping out of college in their sophomore year.
Neither of them knew what to choose as a major and, besides that, Harris would come to require round-the-clock care. Without it, she’d have to move to an inpatient setting.
She didn’t want that. Nor did Bursley.
So they ended their college days. And they teamed up to fight this disease.
‘I hate these tears’
Harris’ body has not responded to available medical treatments, so she turned to music.
It sustains her.
In March, her mother, Lori Bailey-Smith, 53, and Bursley turned to social media to help lift Harris’ spirits. They asked friends, co-workers, clients and health care providers to post videos of themselves singing to Harris.
“She loves music, but can no longer sing,” Bailey-Smith wrote on her Facebook page. “We would LOVE if you could record a video of yourself singing any song, and post it to your personal time line.”
Bursley helped Harris’ mom add the hashtags #Sing4Mariah and #Halsey, hoping perhaps for a shout back from the pop star.
For those who don’t know, Halsey is big these days. So big the singer’s recent hit “Without Me”—among Harris’ favorites—has more than 200 million YouTube views. So big, Justin Timberlake is credited as her co-writer.
The beat is slower, with handclaps and finger snaps. They involve simple but poignant single-syllable verses.
The lyrics to the song Harris wants to write are like that, too.
Later, she added a second line: “I hate these tears.”
Bursley, ever the interpreter, texted out the updated lyrics and added, “She is stuck on the rest.”
Music as medicine
Harris has an advanced form of multiple sclerosis. Her immune system is destroying her nervous system.
She has lost the ability to walk, feed and dress herself. She’s quickly losing the ability to speak altogether.
“She was already pretty seriously impacted by the time we met her in July 2017,” Spectrum Health Medical Group neurologist Cynthia Hingtgen, MD, said.
Harris had to discontinue treatments to slow the disease because treatments weakened her immune system too much.
“She was getting repeated infections that were requiring her to be in the hospital and so it was best to stop the treatments,” Dr. Hingtgen said.
But there is still the music.
At the behest of Harris’ mom, dozens of people—known and unknown—responded to the request on social media by posting heartfelt or hilarious videos of themselves singing songs.
Some were in tune. Some were not. All were sincere.
One child in a ridiculously sudsy bathtub sang “Baby Shark.” A youngster in a Ninja Turtle shirt hip-hopped in his socks to a Drake tune. One woman strummed her own version of Halsey’s song “Sorry.”
In yet another video, a child sang a hushed lullaby at bedtime: “Cuddle up, cuddle up, hush little one, close your eyes for my lullaby, quiet time has come.”
The child added, “Hope you feel better, Mariah. Night. Love you.”
‘I just want to be normal’
Even now, Harris’ superpower is her smile. There’s joy in it. Delight. You see the same smile in her high school yearbook.
Harris and Bursley met at age 16 at Eaton Rapids High School, near Lansing.
At the time, Harris, who has three siblings, had just been diagnosed with multiple sclerosis.
She began to feel unwell one afternoon and her vision seemed off. Her mom took her to an urgent care location.
“You need to go—just go to the emergency room,” a doctor there urged them.
Later, doctors diagnosed her with inflammation of the optic nerve, most often associated with multiple sclerosis. They tested spinal fluid and ran other tests.
At one point, cancer had been a concern.
“I was relieved,” Bailey-Smith said, crying now. “You can treat cancer.”
Harris struggled with debilitating anxiety. When her vision began to fade, she ate carrots—lots of them. She heard it helps.
Loved ones joked she would turn orange from eating so many carrots.
Still, her symptoms remained relatively mild. The spasticity and loss of speech and other symptoms would come later.
After Harris and Bursley graduated with the Class of 2011, they enrolled at Olivet College and shared a second-floor dorm.
But Harris struggled with the stairs. And she found it difficult to see whiteboards. The lack of air conditioning exacerbated her heat intolerance.
Her anxiety, another symptom of multiple sclerosis, worsened.
Eventually, the two friends decided to leave college and rent a home. Bursley ran a pet care business.
Then, in the spring of 2017, Harris experienced a major relapse.
Working with Medicaid, Bursley became her full-time care provider.
They moved into their home in Grand Ledge with three dogs—Casper, Sydney and Leila—and two cats, Sasquatch and Cali-co. There are also two fish, Spuds and Lily.
“She’s my family,” Bursley said. “I can’t describe to you how important she is to me. It was naturally always going to be me. We just figured out a way where I could do it and not work full-time (away).”
Harris’ mother calls Bursley an “earth angel.”
“Words cannot even begin to describe what she gives Mariah,” Bailey-Smith wrote in her social media plea for songs for Harris.
“She takes care of all of her needs,” Bailey-Smith said. “From basic to vital, and everything in between. She’s the chef, physical therapist, chauffeur, emotional therapist, personal assistant, nurse, dietitian, personal shopper, and above all else, an incredible best friend.”
About a week after Harris wrote her second lyric, Bursley sent out a text message update: “She came up with a third line today, if it’s not too late.”
“I just want to be normal.”