Roy Exum: Jerika’s Last Dance

  • Monday, July 25, 2016
  • Roy Exum
Roy Exum
Roy Exum

There is a horrifying disease called spinal muscular atrophy type 2 that you wouldn’t wish on your worst enemy. What happens is the nerve cells in a person’s brain stem and spinal cord slowly die and, without the ability to voluntarily control your muscles, your body withers away in one of the most painful ways you can imagine. Jerika Bolen, age 14, can’t stand it any longer, nor can those who are totally helpless in the face of the disease.

In the coming few weeks ahead, this courageous little girl will ask hospice workers -- in her own voice, mind you -- to turn off her ventilator because her greatest wish in life has now been fulfilled. This past weekend she went to a prom. It was dubbed “J’s Last Dance” and the ballroom at the Meridian Hotel in Appleton, Wis., which normally seats 1,000, was so packed the huge crowd had to circulate in and out.

Are you kidding me! A throng of police and firefighters got the thing started on Friday night when they cheered (and cried) as Jerika maneuvered her motorized wheelchair into a 28-seat stretch limo in front of her house. After the Queen of the Day was strapped in, a string of 27 police cars and a huge fire truck -- each with lights and sirens screaming – headed towards town.

The ballroom was festooned with green-and-black (her favorite colors) that matched her gown but she wasn’t ready for the crowd. Due to a story in USA Today, total strangers from as far away as Florida and California were there and a GoFundMe page – trying to raise $25,000 for the mammoth event -- had to be shut down at $33,000.

Oh, it was a blast all right. Her first dance was with her mom, the D.J. turning Martina McBride’s “In My Daughter’s Eyes” to the max. Then there was a video from the California boy band “New District” that she loves but – oh wait! – into the room jumped the retro singer on YouTube known as Social Repose in his full regalia, feather headdress and face paint.

Richie Giese – his real name – danced with Jerika and then spent a few minutes privately talking to the girl whose hair was dyed blue to match her lipstick. “When I heard about this, I thought, ‘Let’s go all the way. I might as well make her day,” said the entertainer who had flown in from Washington. “Let’s just push this one over the edge.”

And, boy howdy, they did indeed. At several points Jerika was overwhelmed by all the selfies her well-wishers were taking but, don’t worry, a huge candy buffet ran out in the first 90 minutes. “This is just awesome,” the 14-year-old giggled. “It is a lot of fun but so many people. They say they look up to me but that’s kind of scary because I don’t know what they are looking up to.”

One TV commentator asked what advice she wanted to give her visitors and the perky kid said over her ventilator, “Don’t complain … it doesn’t do any good.”

Margaret Norby, a student at Lawrence University, was so moved by the event she called the Bolens to say she’d bring the corsages but when she arrived to pick them up the florist wouldn’t accept a dime. “That’s what moves you so much,” she told the Appleton Post-Crescent. “She has a situation that no one else has but an outlook that no one else has. She has wisdom and is not apologetic about who she is.”

Then came midnight. The lights were turned back on and a certain pall came over the wonderful night. MacKenzie Falck, a 13-year-old who became a close friend of Jerika’s during elementary school, this when things were far better, said it best: “I know she’ll always be with me. She’ll be an angel and look over me. That what friends do, right?”

And her mother? “This was a huge celebration of life … it was more, so much more, than anybody could ever want to wish for – a whole lot of love,” she said, “but right now I am really trying very hard not to fall apart.”

To some the idea of a 14-year-old deciding to “pull the plug” is unfathomable but Jerika is at total peace about what will soon happen. “When I finally decided, I felt extremely happy and extremely sad at the same time. There were a lot of tears, but then I realized I am going to a better place, and I am not going to be in this terrible pain anymore. I’ve been working on this and thinking about it for way longer than anyone else.”

Her mother, who has watched every hour of her daughter’s life when she wasn’t working as a nurse, has complete confidence in her daughter’s decision. “I know she is only 14 but she is old enough to make the decision … it is her body and her pain …” she said while Jerika’s grandmother added, “She’s a very unselfish little girl, and she is tougher than anyone I have ever known.”

Last year surgeons fused Jerika’s spine and removed the heads of her femur bones in an effort to stop the pain in the last of over 30 operations she has endured. “I realized I was ready after the pain didn’t go away. Actually, I think I’ve been ready for a long time … but after the last surgery I sat down and thought, ‘Am I doing this for me or my family?’ and I realized I was doing it for my family.”

As expected the excruciating bouts with pain have become much more frequent and intense. Her ventilator is turned up as high as it will go. And, for a girl who has never walked but who has had no choice but to watch her body ebb away, she realizes now is the time. Her body is virtually paralyzed and what little use she has of her hands and facial expressions is even diminished. “Now is the time.”

A reporter asked if she was scared about the end. “Yeah, a little bit … but after knowing my doctors for so long, I’m pretty sure they’ll take good care of me.”

“Right now I try to be happy. I know I can’t be happy all the time. I still wonder why God picked me to have this disease … maybe it is because I am strong.”

I’m willing to bet that’s right. After all, she was just the Queen of the prom.

royexum@aol.com

Jerika Bolen
Jerika Bolen
Opinion
Democratic View On Top State Senate Issues - March 18, 2024
  • 3/18/2024

Campbell bill seeks to save lives by studying suicide trends in Tennessee 3 p.m. Senate Regular Calendar — SB 1787 , by Sen. Heidi Campbell, would require state health officials to produce ... more

The Odor Of Mendacity - And Response (2)
  • 3/16/2024

The Fulton County judge, Scott McAfee, overseeing the Fani Willis prosecution of Donald Trump and eighteen other defendants has spoken. In response to a motion by defendants to remove Willis ... more

Capitol Report From State Rep. Greg Vital For March 15
  • 3/15/2024

General Assembly confirms new Tennessee State Supreme Justice Members of the General Assembly confirmed the appointment of Mary L. Wagner to the Tennessee Supreme Court in a joint session ... more